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Thursday, December 27, 2007 9:51 AM CST I hope you all enjoyed a very merry Christmas. We had a wonderful day, and thanks to generous grandparents, the kids were spoiled.
We hadnt originally planned to get them bikes, but have been wanting to do so. Andrew is 7 and doesnt know how to ride one....his years on treatment caused his bones to lose most of their mass, and he was at risk for fractures. Now that we have the green light to allow him to do things like ride a bike and skateboard, etc....we were excited to get them...and thanks to a sale at Costco, we were able to get bikes for Andrew and Christine.
Here is a picture of them as they rounded the corner Christmas morning, getting their first look at bikes under the tree....
Here is a picture of the kids on their bikes....
Doug and I had so much fun with the kids, I will write more about our Christmas here.
We took the kids on bike rides a few times throughout the day, and Doug and I were both struck by Andrew's weakness in riding. Both of the kids use training wheels, but Christine has the strength to ride just fine, and Andrew has a tough time on any level of incline and has to get off and walk. This is a surprise, especially after all the swimming he does. The good thing about bike riding, is it will rebuild his bone mass (something swimming doesnt do)...
I emailed his doctor to share my concerns and see if there is anything else we should be doing to help him rebuild his bones and muscles, and to try to get an idea about this issue..and if it will get better in time. She said that for some kids, their neuropathy (nerve pain and muscle weakness) gets better, and some deal with this long term....I dont think they really know much about it, but we pray that this is something that Andrew will outgrow.
and...not to leave Elise out of the Christmas morning festivities..she got a bike too.....
She was just so adorable all day, enjoying her bike, and baby dolls, and finger puppets.
I wish everyone a blessed and healthy 2008.
Please take a moment to send a word of encouragement to Christian's family, as they are spending, what is most likely, their last moments with their son/brother/nephew/grandson. It is times like this, that the meaning of Christmas, God sending His Son to earth to save us, means everything....and we are glad that Christian's faith is strong, and we are thankful that as he leaves this earth, he will be beside God in Heaven.
love,
kim
Saturday, December 22, 2007 7:25 PM CST Can you believe it that Christmas has hurried up and is almost here???
A month ago I was feeling a bit smug, having been nearly ready, way in advance....
I dont know if it was that smugness, or the hospital stay with Elise, or the puke-o-rama that we had last week, but somehow I got behind.
So behind, that the trip-to-the-mall-to-see-Santa, only happened 2 nights ago!!
I usually try to take the kids the week after Thanksgiving, for many reasons;
1. It's early enough that the line is short
2. I can instill the "santa is watching" effect, right from the start of the season, as it is intensified after having met him in person
3. I hate going close to Christmas, as the line is too long, did I mention that? I dont like waiting in line for much, especially not with my kids to see Santa, it's like begging for a melt-down.
Anyways, so, Thursday, after school, we hurried down there, dressed in our Christmas outfits. The line was wrapped around and through and around again, which equals a wait of over an hour, but my kids were troopers. Elise was fussy and tired, but the other two were sparking with anticipation to show their lists to Santa. Yes, they made lists. Seems greedy to me, but, they are very particular. Well, not "they" but "he"....Andrew is very particular.
Here they are, can you see the excitement in their eyes?? Im so glad Andrew is such a fervent believer. Santa was very sweet with Elise, see him looking after her here....
Then, out pop the lists, Andrew and Santa are having a special moment here. Elise looks bored with the whole thing.
By the look on Andrew's face, this might be where Santa promised him that he would bring the Candy Claw Machine .
The kids are all raring to go now, counting down the days, and I cant wait either. I know they are going to be more than happy on Christmas morning....and we are thankful for the great Christmas we will have....especially the gift of Baby Jesus.
Hope you are enjoying the spirit of Christmas,
love,
kim
PS. our friend Christian is going through an incredibly difficult time. That is an understatement! He really needs a miracle, a I can think of no better time for God to intervene in the hurts of this world, than Christmas, as he did 2007 years ago. Please visit Christians page and leave a message, letting them know that we sent you to pray....I know it is encouraging for them to know that they are not alone right now, that people are remembering to pray for their sweet boy. thanks.
PPS. After re-reading the page, I realized that I didnt say much about Christine (story of her life, I guess, poor thing)....
She was just as excited as Andrew to see Santa, and had a very modest list, and at the bottom of her list, she had her daddy write, "and if you can bring these that is nice, and if you cant, that is nice too." She is so sweet, always goes with the flow, she really is a bright spot in our lives. And, I think she looks just beautiful in her pretty dress (and she looks just as beautiful in not-as-nice clothes too.)
Thursday, December 20, 2007 2:15 AM CST A very long day here....
Christine had her Christmas program. She looked so pretty and grown up, lately I am noticing that her face is not a baby face anymore, but that of a young girl. I have pictures to post :)
We then went and got Andrew, and took him to his clinic appointment.....he is doing great. I asked the doctor for the results of the treatment study that he followed, the one that shows suvival rates, etc.....and made the comment that his risk drops at his 1 year OT mark...and then she corrected me, and said it's the 2 year OT mark where we see the big decrease in relapse. Not that numbers matter,and he is doing great, but, the reassurance of numbers is nice.
Andrew brought some of his birthday gifts to donate, "for kids when they get needles in their backs"
It was odd, as we came into the clinic, he quickly climbed into my lap and grabbed his throat, "Im feeling weird in my throat" he moaned...and I knew what he meant.
When Andrew would get shots in his back, the medicine made him feel horrible. It would cause him to disassociate and feel paralyzed, while getting the painful shot (no anesthesia)...it would also make him throw up a lot for the following hour or two (or day). Sometimes when he goes to the clinic, he feels all of that again, in his throat, and he gets upset. Luckily he got over it quickly, and had fun with friends who were also waiting for their appt.
While at CHOC, I went down to medical records and ordered Elise's test results and report from the oncologist. Hopefully this (along with reports and results from her pediatrian) will help the gastro doctor see the big picture.
And...we went up to the 3rd floor to donate some stuffed animals. Doug's company did a campaign with their clients, and they donated large, very comfy, elephants to the oncology floor. Andrew told the staff to give them to the kids that need a hug.
As we walked around, visiting with his very first nurse, Renee, I noticed two pictures on the wall.
One was a picture of Sponge Bob and some friends...painted by Gregory.
The other was of Santa Claus, painted by TJ. (TJ died around Christmas time, making the picture even more poignant, knowing she didnt survive for much longer after it was painted.)
I felt so sad that both friends have gone on to Heaven, thought of their families, and was thankful that both know Jesus (TJ became a Christian shortly before her death.)
I am grateful to have Andrew here with us, and to have him doing so well.
We drove home in the evening traffic, and I rushed off to a neighborhood meeting.
Someone, like an idiot, thought it would be a good idea to put a POWER PLANT, literally across the street from our neighborhood. And, someone thought it would be ok to not notify our community....so, that equals a bunch of angry residents demanding that something be done, although it's too late, unless we get a lawyer within the next 7 days.
It didnt help that we had to listen to some hot air from the Air Quality guy, tell us about "acceptable" levels of toxins, and that there is no link to cancer.
HELLO, if you dont know what causes pediatric cancer, you cant tell me that toxins from your power plant arent involved.
We know pediatric cancers are from environmental factors, more than one (which makes them hard to trace)....we need more pediatric cancer research, and we need more people to THINK, and put the power plants in the open spaces (to which we have TONS of, just east of the proposed site)...not try putting it 300 feet from the houses. duh.
Im off to bed, will put the pics up when I get the chance.
hugs,
kim
Sunday, December 16, 2007 12:21 AM CST We have had a fun and exciting weekend thus far....
Andrew finished "fall" swimming, and is glad to have a few weeks off before he starts the "winter" season. I will be intrested to see how his pain does without the swimming. I will say that it was so freezing cold the past few weeks, that I am really proud of him for working so hard. Back when we changed to daylight savings, he started complaining, as it is cold and dark when he finishes (5:15)...this really seemed to bother him, and he felt like he was swimming longer, since it was dark when he finished. I told him if he could finish out the season without complaint, we would go to Chuckee Cheese over Christmas break - and I never heard another word!! So, that is something he earned, and is looking forward to doing when school is out.
Our community goes all out with Christmas lights, having contests between the neighborhoods, as well as individual winners. This year, they have let the residents judge the individual homes, and have a list of people that entered their house in the contest...So, we have spent the past two nights checking out everyone on the list, and casting our votes. We can only turn in one voting sheet, so we have to come to a family concensus...which isnt always easy....the kids seem to like the "put-every-inflattable-animal-and-mismatched-lights-and-painted-wood-cutouts-on-the-lawn" look, while Doug and I appreciate the more traditional, or at least polished look. Tonight will be our final tour for making our votes, and we are inviting a friend from swim team to join us, it should be fun.
Each year, Doug and I put together a "live nativity" in our community. It is very simple, much in the spirit of the real birth of Christ. This year, many of the characters "called in sick"....and I reminded myself that Mary crossed the desert without even knowing where she would have her baby....so, I resisted stressing out about our little nativity. It turned out nice, with a children's choir, real animals, and the reading of the Christmas story. I would say at least 200 people turned out, and one of our adorable stores hosted a reception with refreshments after.
I breathed a sigh of relief when it was done, and we planned to grab some pasta from a little Italian place.....but we noticed that Christine had wet her pants during the choir performance (she hates to break away from the fun to go potty...)....so, we got her changed and headed out. We saw many friends at the restaurant, and after giving our order, and looking forward to eating....Elise began vomitting major amounts of curdled dairy product all over me. It just kept coming out like a giant hose of white chunks. Doug and the kids started to leave, but Elise wasnt done. I was able to get Doug's attention to get some napkins and take the baby....(if you have heard the story of Andrew's birth, you may remember that he is not the guy you want to have help you in a crisis..)luckily, some of our friends at a neighboring table got me some more napkins, and I was able to clean up enough to go outside....although, one lady gave me a horrified look on the way out....I was really covered.
Then, I had no choice, but to take my clothes off in the parking lot. It was cold, and I really didnt care if people saw my grandma panties or my fat, and then I drove home in my underwear....
Elise seems to be feeling better...maybe she had that brief vomitting bug that Andrew had, I sure hope so. I still cant figure out what she threw up, unless her milk from the morning never digested, YUCK!
Today we will HOPEFULLY finish our Christmas cards, and get all of our Christmas stuff wrapped and packed, ready to ship to the grandparents tomorrow.
I hope you are all enjoying the Christmas season,
kim
Thursday, December 13, 2007 9:12 PM CST Well,,,, We went to see the gastroenterologist for Elise today.
I wish I could come on here and give you some news, tell you about the next step forward, etc. etc., but, just as I feared, Im trapped in the, "wait and see" mode.
We went to the doctor, who has had the test results for 13 days, and he told us her liver test (5'NT) was quite high. (thank you Dr. but we have known that for 1.5 weeks now.)
He then went over the other tests that he had from the week in the hospital, and said, "It's only been two weeks, let's test her again in a week, and then see you in 3-4 weeks. Im not ready to do a biopsy on this yet."
UM.
Not that I am hankering for a biopsy because I love a biopsy, or anything like that....but, it's been going on for 3.5 months. Unfortunately, he didnt have the prior 3 months of test results...so, I realize Im ONLY THE MOM, and not a doctor, but I gave him the run down on all the tests the pedicatrician ordered, and that the oncologist ordered, and that BOTH DRS SAID HER LIVER WAS ENLARGED...MANY TIMES, CHECKING IT ALMOST WEEKLY FROM SEPT - NOV. But, he hasnt seen those tests, so......we will repeat her tests, plus add in a few more for good measure in a week. And then, see him in 3-4 weeks.
HMMM.
If we do the tests in a week, and they will be back the next day....let's say a few days, for the sake of holidays and vacations....WHY WAIT 3-4 WEEKS TO SEE HIM AGAIN???? If the results are back in 1.5 weeks, then see us in 2 weeks....that leaves us waiting around for 1-2 weeks FOR NO REASON.
Well, Im not going to turn this caringbridge site into a vent-fest, I'll SAVE THAT FOR MY BLOG
but, we know nothing new, and apparently wont for another month. Happy Holidays.
As for Andrew....He was sick yesterday, fever, felt and looked horrible, complained that his legs hurt and he couldnt walk (complaints of fevers and leg pains send cancer moms into a panic!) and was throwing up all day. In the afternoon, he came and said he was craving a....wait for it.....chili cheese hotdog!
I educated him on the science of throwing up (as if there isnt a chapter written by kids just like him)...and told him that chili and hotdogs were the 2 worst things to eat when you are nauseated. But he insisted. So, I said, "No Chili, it will stain the carpeting (that one spot that isnt already stained)...but you can have a hot dog, but be prepared, you WILL throw it up (and then develop a life-long aversion to hot dogs.)
So, he had a hot dog, savored it like a bit of a weird-o (or like he was practicing his kissing skills, with sound effects)...and thankfully didnt throw it up.
He was fine today, went to school, swam a mile in the 50 degree cold (honest, we are in a cold spell here!)....and is now cozied up in his jammies, feeling great.
Because he was sick, we didnt go to his appt. yesterday, but he did get his labs drawn on Tuesday and I got his results; "all normal" which is such a nice relief after his fevers and leg pains. Thanks for all of your prayers!
love,
Kim
Monday, December 10, 2007 0:27 AM CST Happy 40th Birthday Doug - you old man!! (Since Im older than Doug, I get to tease him about his big 4-0 :) )
We had a busy day, that included every 40 year old guy's dream; going to see the movie, "Enchanted." Actually, it was a cute movie, and Doug liked it as much as the rest of us. Afterwards, we went to a special treat, a sushi-tepan restaurant that he really likes. The restaurant has a lot of aquariums and such, and since Doug loves the ocean and fish(some may know he majored in marine biology), it was the perfect atmosphere for him. It also was a way to remind him of his life goal.....
Doug has always wanted to go cage-diving with great white sharks, and had set this activity as something he wanted to do for his 35th birthday. I think at that time, I was 9 months pregnant, and Andrew was 2, and there was just no way he was going to live his dream that year. So he pushed it to 40. As 40 approached, we both knew that the dream was further from reach than it ever was...especially since he expected he would have to go to South Africa to do this special dive.
Recently, Doug found that you could do this dive off of the Coast of Baja California (a 10 hour boat ride from San Diego...SD being an hour ride in the car)...way more do-able. So, he has his sights set on his 45th birthday, and is excited that it seems realistic to finally go.
As for today, he was surrounded by us, his family, and we had a great time. The kids also got him some much needed socks, which he appreciated, and a gift certificate to the book store, as he loves to read.
Andrew had his Christmas musical last week, and it was so adorable. It was called, "Cookin' up Christmas" (you can look it up online) it was a Christian based little play, that included the birth of Jesus as the real reason for the season, but the cast of characters were the Food Network stars. The main character was Paula Dean, and the girl that played her was so adorable. It was really fun and we had a great time, including a trip for ice cream afterwards with some of his classmates. Doug and I were a bit stunned during ice cream, when Andrew blurted out about he and his "FIANCEE"....I happened to be talking to my "in-laws" at the time, and we all got wide eyed and our jaws dropped at the same time....he is so hilarious!
Christine has her Christmas program coming up..Ill try to get pictures from both up soon.
Elise is still smiling, and still pooping her pale, yellow diarrhea. I have called the specialist every day, hoping to move forward with some plan, in light of the latest test results that point to liver damage...but I cant seem to get a call back. Frustrating. We do have an appt. on Thursday, and I hope it gives us more insight into what could be going on and a plan of action. She is so darn adorable, and her cheery disposition has helped us get through these months of tests and concern.
Another cancer friend has gone to Heaven, Ashley has fought a long battle, and we are sad that it ended this way. Her family is amazingly tough, as in the midst of Ashley's long battle, her younger brother also was diagnosed with leukemia. He finished treatment, and is doing well, but Ashley relapsed during treatment and wasnt able to find healing on earth. We met Ashley and her family through my online support group, and also were on our wish trips at the same time to Give Kids the World and the whole Florida-theme-park-package. Please pray for her family, that God would provide them the strength to continue on, without their sweet girl along side them.
Our family remains committed to trying to find a cure for childhood cancers. I was recently asked to be a part of the Parent Advisory Board for Alex's Lemonade , an awesome foundation that raises money for research. If you are looking for a cute and sweet, meaningful book for a child's library, Alex's book is a perfect Christmas present.
Another wonderful gift idea to help support families enduring the battle, is to get an adorable plate for Santa's cookies. Ali's mom , Marey, is once again selling these custom plates, with all the proceeds going to families in need. The pain of watching your child suffer with cancer is only compounded by the incredible financial burden that is puts on families.... this fundraiser is a great way to help out those in need, while getting (or giving) a super cute gift in return. Stop by and see the pictures of these plates..
Thanks for checking in, Andrew will have his 1 year off-treatment doctors visit on Wed. Ill keep you posted as to how it goes, as well as Elise's appt. too.
love,
kim
Monday, December 3, 2007 11:46 PM CST Hi Everyone,
Today the pediatrician called me and gave me some of Elise's lab results. Her 5'nucleotisade is high, which is an indication of liver disease (or something).
Just to back track......
In September, they did a blood test at her regular visit with the pediatrician. Her "low weight" triggered the labs, because she eats a healthy, hearty diet, but is underweight. Personally, I attribute her low weight to her activity level...she has been crawling and walking for some time, much more than her little same-age friends. Also, she has cheeks and thighs and doesnt look malnourished, so, Im not worried about her weight.
But the labs came back with some other issues, and we spent September and half of October repeating her labs. It seemed that each week we would get some things too high, and the doctor would "redo" them the next week, only to find things were still out of whack.
Additionally, her liver was enlarged. We met with the oncologist in October, and she recommended more tests and an ultrasound of her liver.
Shortly after that visit, Elise began having diarrhea, pale yellow, foul smelling diarrhea. The coloring is important, as pale yellow stools are often a symptom of liver disfunction, as it is the bile that darkens the stool, and pale stools mahy be a sign that the bile production is amiss.
Soooo....while in the hospital, they did a bunch of tests, and some of the liver ones came back high. We were told that they could be relating to the liver, OR her bones or something else. So they did more testing, and we have been awaiting the results....
Today they came back and it shows that the problem truly is coming from the liver, although, we dont know what the problem is.
Some things point to a blocked bile duct, however, the doctor pointed out that if that were the case, she would be jaundiced (with high bilirubin) and that is not the case....
Our pediatrician said that it really is up for the specialist (gastroenterologist) to take it from here, and we have an appt. with him a week from Thursday. All indications are that Elise will need to have a biopsy to further determine what is going on. Please keep her in your prayers.
As for how our family is handling this, honestly, it pales in comparison to anything we went through with Andrew, and while we wish we had some answers, we are not as worried as we could be. We trust that whatever is going on, that we will be able to get through it. We trust that God is with us and we ask Him to heal Elise and provide us what we need to get through this.
Andrew had a field trip to the local zoo, and had a fun time checking at monkeys and snakes. On Thursday he is in the school Christmas program, I cant wait to see it!
Christine has a Christmas program coming up too, and has been practicing all of her Christmas carols.
The family enjoyed a fun Christmas party with friends from Andrew's school this past weekend, we all had a blast.
So, we are keeping busy with Christmas events, and hope that you are all enjoying the joy of the season.
love,
kim
Saturday, December 1, 2007 0:02 AM CST Blaze, it's a word that was on page 2 of the 11 page list of words. It was in the "average 1st grade" section. You'll notice it's spelled with a Z not an S. Andrew will forever remember, that it's spelled with a Z and not an S, much the same way that I will always remember that schoolhouse is spelled S-C-H and not S-H-C, and Grandma J will always remember to keep her "na"'s under control, and not spell "banana" B-A-N-A-N-A-N-A.
So, as for the Spelling Bee, I guess you could say that Andrew went out in a "blaze"
He earned a 3rd place certificate, for which we are proud, but I'd be lying if I said he (and we) werent a tad disappointed, simply because he is an awesome speller, and he really is able to spell much more than was shown today. Disappointed because he lacked the interest in looking over the word lists, diappointed that we were in the hospital all week, and I wasnt there to try to encourage him to study the lists.
Disappointed like a homerun hitter, who goes up to bat and strikes out....he knows he can hit, he can hit well, but he didnt get to showcase his skills. But there is always the next inning, nobody bats 1000, nobody.
I am very proud of Andrew for taking his disappointment so well. No crying or pouting, a little bummed, but ready to move on, and happy for his friend that won.
I reminded him that he has next year (and the many following) and that there are other fun things like the speech and math competitions.... he liked hearing about those.
As for Elise, I feel like I am sitting in a Chinese language class, or astro physics, or some other class where I dont know the words, I dont understand the processes, and I really dont want to.
I remember when Andrew was first diagnosed with leukemia. I knew it was "cancer of the blood" and that was it. I quickly began spending nights on the computer, researching journal articles, and developing an understanding that I didnt want. I clearly remember reminding the universe, that I hadnt gone to medical school for a reason, because I dont like medicine, or blood, or needles, or life sciences.
Over time, I learned a thing or two (or twenty bazillion) about leukemia, and on rare occasion, kind of liked it and thought I should go back to school and become a doctor (minor nano-second flashes, before reminding myself that I hated life sciences.)
Now, I find myself drowing in a new murky cesspool of life-science-ish words....and even if I am learning the words, I dont even know them well enough to form sentences, it's all new, and confusing.
I talked to her pediatrician today, to run some questions by her....try to get some clarity....
Here's what I know (or what's floating in my foggy head)
*autoimmune issue - what is going on with Elise may be an autoimmune issue, which may lead to other diseases.
*they will probably be doing a scope/biopsy of her stomach
*one of her liver panel labs is coming back high, and they need to check and see if it is leaching from her bones or liver (I dont know what is leaching or what it means if something is leaching.....)
*interesting to me, that the doctors in the hospital said her liver was fine, but for the past 3 months, 3 other doctors said it was enlarged (as recently as 2 weeks ago) and there is a liver panel lab that is wacky...hmmmmmm
*she is now taking extra fiber and probiotics, which makes not a darn bit of sense to me, especially since she got plenty of both in her regular diet
*Im still smarting from the gastro doctor saying, "you know this is probably 'regular toddler diarrhea' which is usually caused by giving kids too much juice"....especially since I dont give my kids juice, at all, not even a drop to "flavor" their water.!!
*I feel like we are back to square one, since I was told to go home and see how she does.....even though she continues to have diarrhea....do they think it will just magically stop??????
*some of the doctors/nurses shared that some kids have diarrhea for 6 months to a year, and then it just goes away, they grow out of it, it was just "normal toddler diarrhea"
*if you google pale stools, you will see it is often related to a problem with bile, which is produced in the liver, it is the lack of bile that causes the stool to be yellow...hmmmm, there's that pesky liver reference AGAIN.
That's about all I know, one day these dots might connect, or maybe not. It's like looking up at the stars and trying to see the belt and the dipper and those other pictures that Ive never been able to see.
We will see the gastro in 2 weeks.....
We are supposed to see the pediatrician on Monday, but come on, what would that help? I love our pediatrician, and she is incredibly bright, but we have spent months doing tests, I doubt that looking at her on Monday is going to bring us any great revelation, it will just waste a few hours of our day and cost me a co-payment. So, I told her that I didnt see the point, she agreed, and we will keep in touch as test results continue to come in, or if Elise's symptoms get worse.
In the meantime, it's the weekend, and Im looking forward to catching up on The Hills (they didnt have MTV in the hospital, so I missed it) Im really curious to see Spencer's sister.
Have a great weekend, it's raining here, Happy Winter.
love,
kim
Friday, November 30, 2007 0:43 AM CST Elise and I came home this afternoon. We dont have any clear answers as to what is going on, we are just thankful that things like cystic fibrosis and cancer have been ruled out. Her "symptoms" have been odd, starting with her labs back in September, her enlarged liver (which was still enlarged 2 weeks ago, but now is normal)...and now all this diarrhea. They have a lot of tests pending, I think for different types of autoimmune things that I know nothing about....
The stay in the hospital was not bad at all on my end, but it was hard for Elise. She didnt feel well, and her little sucking fingers were on her IV hand, which was all bound up with a heavy splint...she had a few tantrum episodes where she tried to get her hand out, and they had to redo it a couple of times, I felt bad for her.
She is now feeling fine, although she has had 6 diapers filled with diarrhea, just since we have been home...
We will follow up with the GI doctors in two weeks, and in the meantime we may hear more about her test results. We will see her pediatrician next week..and she may have more insights too.
One moment that was surreal, was when they decided to admit Elise, and handed me a tiny little hospital gown. I know the print too well, with the primary colored bears, Andrew wore an identical gown the night he was diagnosed. As I looked at Elise, with her splint (just like Andrew's "cast"), in her metal crib, I couldnt help flash back to Andrew...the two look identical. It did remind me of how far he has come, and how much God has done to heal him. We ran into a few people at the hospital (medical staff) that remembered him, although hadnt seen him since he weighed 23 pounds, had a feeding tube and was bald....it was good for them to see what God has done for him.
So, please continue to pray for Elise, and for wisdom for the doctors.
Also, please pray for Alexia's family, as they face life without her on earth. Childhood cancers are never an easy fight, the kids are in so much pain, so critical, for so long...and Alexia in particular had a very tough road. That little girl had so much strength and courage, and rallied back many times....and always had a smile. Her parents literally moved across the world to get her the best care, the best chance, and it breaks my heart to think that in the end, there was just nothing that could be done to heal her.
Each time a child dies, I am reminded that God told us that "death has lost it's sting".....while it doesnt take the pain of those that miss her on earth, I am comforted in knowing that their separation is only temporary, that through Christ we will live forever, in a place that is only happy.
Tomorrow is Andrew's Spelling Bee.....Ill let you know how it goes....
love,
kim
Wednesday, November 28, 2007 6:22 PM CST Hi Everyone,
We are hanging in there and Elise is starting to feel better. She does not seem to be having any gas pain, and the "explosions" have stopped, so now we are sort of back to the "regular diarrhea and foul poop" that we have had for the past 2 months.
They are still waiting for a variety of tests, and we dont expect that we will have any great revelation any time soon, but will have her followed up with the gastro doctors. We hope that we can leave tomorrow.
When Andrew was in the hospital, except for when he was first diagnosed, he was in a big bed. He and I slept together in that bed and did a lot of cuddling....still times I cherish.
Elise, is in a big metal crib. Id probably get in trouble if I crawled up in there, not to mention that it would undoubtedly collapse...so we dont get as much cuddle time. Her IV line is quite short, much to her frustration, so she is stranded in a sense. At home, when it is bed time, I put her to bed and she is fine. Here, and probably because I am in the room, making her think it's not really time to sleep, she refuses to go to sleep. For the past hour, she has been screaming and flailing, tying her self up with her IV, refusing to go to sleep. The other day, I asked if they could sedate her, because I was holding her while she thrashed about, for over an hour and afraid I would drop her...cant very well put her in the heavy-duty crib that she can slam her skull against....but I was told they dont "sedate babies"...hmmm....so, currently, she is in her crib...I thought maybe if I left the room she might go to sleep...I asked the nurse to keep an eye on her, but I wont be completely surprised if she pulled her IV out or managed to crawl out of her crib...she really is not thrilled with being here.
I on the other hand, am not minding our stay. first of all, we have our own room, and for those of you cancer moms that still check in, you know that having your own room makes all the difference in the world. Also, something else different at this CHOC location, is a plethora of volunteers that offer to bring you coffee, magazines, watch your child while you take a break, bring you little toiletries....it's really very nice. AND, my first day here, I was visited by a sweet lady who introduced herself as the "customer service manager".....she gave me her card and said to let her know if there is anything I need. I asked her, "do they have a customer service rep in Orange?" I dont think in 4 years I ever met one, but they probably knew to keep her away from me, less she be overwhelmed with my input for changes and demands....
Actually, CHOC at Orange is very nice, we miss it in many ways, including the little kitchenette with free Oreos. Andrew was supposed to have his 1 year OT check up today, and we were looking forward to going up to the 3rd floor to hand deliver our Christmas Card and hug our favorite nurses. I bet many of them wouldnt even recognize Andrew, as he looks so healthy and wonderful now.
So, here we are, waiting for info, but hopefully going home tomorrow.
Thanks for praying and checking in.
love,
kim
Tuesday, November 27, 2007 11:31 PM CST Thanks for keeping Elise in your prayers.
They did the test for Cystic Fibrosis tonight, and we already got the results back that it is negative, which is a huge praise. It is an interesting test, and Im adding new medical info to my "oncology" background....they make her sweat and then measure it, and then check for chemicals in the sweat, weird.
They are still waiting to get a number of results back, including the silliac (cilliac?) disease, and other stuff to see if she is absorbing/metabolizing everything she takes in. We are meeting with the GI doctors again tomorrow, and hopefully will get some answers.
Elise has been in a lot of pain, which is new. She has felt fine for much of the past 2 months as we search for answers, but we think she has some "gas" issue as of this weekend, as she has a lot of intense cramping, and then EXPLOSIVE foul diarrhea....and yes, it has exploded on me, and I had to spend half the morning in a stinky bra with a gown on, it's always something to keep things from getting boring here. Please pray that she is feeling better and that we get good results in all of this.
The kids are doing well with Doug. Doug doesnt typically get to go to Andrew's swim practice, and he was impressed to see Andrew swim 1400 yards today. The spelling bee is this Friday. They gave the kids the words ahead of time, and of course, Andrew has no interest in going over them, so I hope he does well.
Ill keep you posted as I know more about Elise, thanks for checking in and for praying for her healing.
love,
kim
Tuesday, November 27, 2007 4:52 PM CST Hi Everyone,
We are still in the hospital, at CHOC, but at their Mission Viejo location, which is just down the street from our house, and much easier to deal with.
Elise has not been feeling well, they have been doing a number of tests. The ultrasound of the liver was done and looks good :) We are awaiting the results of several more tests, including for silliac disease (sp?) and cystic fibrosis. Please pray that God would keep His hand on Elise, and bring quick resolution to what is bothering her.
Doug is at home this week, trying to work and be Mr. Mom. We expect to be in the hospital for at least another day or two.
Ill keep you posted as I can....when Andrew was at CHOC, he was so independent that I could take a break to update his site, but Elise isnt easy to leave...there is a volunteer with her now.
A couple of interesting tidbits...when Christine was in the ER a month or so ago when she had her ear glued, the nurse was very sweet, a lady named Rose. Christine still talks about Rose. Well, we saw Rose again in the ER, and as it turns out, she has a daughter who has cancer, also treated by our docs at CHOC. She is not doing well, her cancer has returned and she isnt expected to survivor much longer, please keep her in your prayers, she is 14 and her name is Frances.
Also, the doctor caring for Elise did her residency at CHOC and remembers Andrew. She said she remembers when he was "at his worst" and it was sweet to hear her talk about how wonderful it is to seem him doing so well now.
We are grateful for all that God has done in our family, and continue to praise Him for His love to us.
kim
Monday, November 26, 2007 8:39 AM CST I hope you all had a wonderful Thanksgiving. We had a nice time going to my aunt's house. My cousin just had a little baby, so the kids, of course, went bonkers wanting to hold him and talk and play with him. He is only a week old, so we kept the kids at a distance, but they were excited none the less.
We got a lot of rest and relaxation in this week, along with a trip to see Mister Magorium's Wonder Emorium (compliments of Grandpa and Grandma in Georgia -Thanks!) and dad took the kids on a nature hike to find fossils.
Today, school starts back up, swimming starts back up, the routine starts back up, which is a life saver to me.
Elise is scheduled for her ultrasound this Wednesday, FINALLY. Her diarrhea (with a super foul smell) has gone on for 6 weeks now. They have done all kinds of tests (we are still awaiting results of her stool culture), but Im tired of this waiting. She woke up this morning with leaking diarrhea, and I have decided that if her doctor doesnt have some answers this morning, I may just take her to the ER.
I have come to learn that in the ER, they get to the root of the problem rather quickly. If you need an ultrasound, they wheel you in and do an ultrasound, you dont wait 2 months. I really want to get to the bottom of what is ailing her.
Andrew has his monthly clinic visit on Wednesday, officially his last visit of the "year" before going on to an "every other month" schedule.
Please stop by and check out the ADORABLE "santa" plates that Marey has made. Order now, as these are a great decoration and a MUST HAVE for Christmas Eve to put the cookies out for Santa. They make wonderful gifts, and all the proceeds go to help families with a child battling cancer. Check them out here
Please continue to pray for our friend Alexia as it appears that she may be going to Heaven very soon. She has fought for her entire 3 years, she is one tough little girl.
love,
kim
Wednesday, November 21, 2007 9:10 AM CST CHECK OUT THE TICKER!!
It has been a year since Andrew completed his treatment. WOW. Last year, it was the day after Thanksgiving that he took his last chemo. After three years and four months of chemo, nearly every day, his body was going to get a chance to rest.
People often would ask how many rounds of chemo Andrew had....with childhood leukemia, they dont really call them rounds...but he would get bombarded with multiple chemos...some daily, some weekly, some monthly....for 58 days straight without a break....and then have a week off before starting 58 more days. Andrew endured this intensive schedule for 15 months. He was very fragile this entire time. He then went on a "maintenance" phase, which included daily chemo (no breaks) for 2 years.
Andrew and I were talking yesterday about how he feels different now, and he noted that he doesnt throw up anymore. I cant imagine being nauseated for 3.5 years, but my brave boy endured it.
People ask me if he is "cured"....I dont believe that word exists in childhood cancers, but I hope one day it does.
This past year has posed the biggest risk of relapse to Andrew, so we are especially thankful to God that he has reached today's milestone. When Andrew has reached 10 years since his treatment date (approx. 6 years from now) his relapse risk will be that of the rest of the population, however, the chemo and radiation that he received causes other cancers, as well as a host of life threatening issues, so he will always need to be monitored very closely in regards to his health. This past year, he has gone to the cancer clinic each month for a check up, for the next year, he will go every other month.
In the past year, I have noticed that Andrew is getting physically stronger, and less fatigued. His muscles were literally eaten away by the chemo, as were his bones. I know the swimming 4 days a week has helped him tremendously. He still needs to nap a lot, and there have been times when I pick him up from school that they note he has been sleeping all afternoon, or he gets in the car and falls asleep on the 2 minute ride home, but this is happening less than last year.
Andrew has also added more food choices to his menu. A year ago, he only wanted white rice, and maybe "butter toast" (which is toast, with butter :) )....today, he will eat yogurt, several fruits, and even a couple of vegetables. He will on rare occasions have meat. It is a slow process, and I try to respect the fact that his taste buds have been damaged and foods dont taste good to him. We are taking baby steps, and it is important that he continue this progress, so that he can have healthy eating habits to rebuild his body.
Andrew has grown a "normal" amount this year, and now measures 43 inches. He is still a couple inches under the 0% mark on the charts, but it is a good sign that he is growing again.
We just had Andrew's teacher's conference, and he is doing well in all areas, with no signs of cognitive or attention problems. He is performing above grade level in all academic areas...which I take as a special sign from God that He heard our prayers and has kept Andrew under His wing. This is truly a miracle and a reminder of the protection and healing that God granted to Andrew.
On this Thanksgiving, we are reminded of God's work in our lives, and all the blessings that He has provided. We are thankful too, for all of you that have come along side us to pray and encourage us during difficult times. I hope you all have a wonderful Thanksgiving and feel blessed by all that God has done for you.
love,
kim
Monday, November 19, 2007 1:39 PM CST I hope everyone had a great weekend.
Just an update about Elise. The doctor called and said her white blood count and platelets are still high, but a little less than before (more importantly, not getting higher.) She has not received anything back from her stool cultures...she hopes to hear back by the end of the week. She is also going to give radiology a call to remind them to try to get us in sooner for the ultrasound of her liver. Elise feels fine, besides her yucky diarrhea. She is happy and playful.
The other two are off school this week, so Im working on keeping them entertained.
Some of you have noticed the ticker...Andrew's 1 year off treatment date is approaching. This is a very big milestone for him, in many ways....I will write more about it later.
Love,
kim
Thursday, November 15, 2007 3:21 PM CST We just returned from another doctor's appt. with Elise. It was a follow up on her blood work, and also they tested her stinky poop, that has been yucky for the past month (mind you this process started nearly 2 months ago...so, I dont know if the poop is related.)
The doctor said her liver is still enlarged....but otherwise she looks fine, and has increased her weight to 19.6 pounds (although I was never worried about her weight.)
She got some blood work done, and unfortunately her little vein blew, so they had to poke both arms to get the labs.
The doctor didnt seemed pleased that radiology hasnt called to fit us in for the ultrasound of the liver, she is going to contact them and remind them to try to get her in sooner.
Other than that.....not a lot to report around here. The kids are all doing fine...getting excited for Christmas.
We had Andrew's teacher conference the other day, and it was such a blessing to hear how well he is doing, which only serves to remind us that God has been more than faithful in healing and protecting Andrew. As we approach his 1 year OT milestone, we are grateful for the 7 year old boy that God has allowed us to keep here with us.
The weather his warm, and the kids are out of school all next week.....should make for some fun.
love,
kim
Saturday, November 10, 2007 5:27 PM CST We are enjoying a crisp, fall weekend.
Christine had a soccer game today, and she ran a bit more than usual. Typically, she does not like to get hot, and running also makes her tired, but the cool weather today seemed to give her an advantage, and she hustled on the field. She was very proud of herself for kicking the ball a few times, and we are proud of her too. It's wonderful watching her grow up, and seeing her personality develop, her likes, dislikes, and all of those things that make her Christine Marie. She really is a joy.
Here is a picture of Christine and her BFF at her school Harvest parade.
We took the kids to the church Harvest festival at night....here are the girls riding horses (you can see Christine in the background...faintly, with her Belle dress on, and her pink sweats underneath. Elise is really enjoying herself! Christine also loves ponies, and was excited to go for a ride.
Speaking of Elise, she still has not had her ultrasound. We are scheduled for the end of the month, and our doctor told the radiologist to call us if there are any cancellations. She still is having weird diarrhea (sorry for the graphic)...I had her on a BRAT (bananas, rice, applesauce, toast) diet for over two weeks, and it helped a bit, and her rash is gone....and I put her back on regular food yesterday, and it wasnt a good move. But I hate to keep her on a BRAT diet forever... Her stomach is also very distended (you can sort of tell in the picture on the pony)...Ill be glad to finally get her ultrasound. But she otherwise feels fine, and has been happy and smiley.
Back to the Harvest, Andrew was excited to dress up like Buzz Lightyear, which is a costume we had around for dress up. Im one of those weirdos that doesnt particularly care for Halloween. Sure I love eating candy and dressing up...but the night in general isnt something I like, for several reasons, none of which anyone ever agrees with....including my kids, but this can be one more reason that they need therapy when they grow up. As a compromise, we go to the church Harvest festival (but let's be honest, it's just a Halloween party, isnt it?)...but rather than be a total stinker, we go, mostly to support the outreach that the church has to the community. Our church is near an area where there are a lot of families that struggle financially....and the party is fun, with a variety of bounce house type activities, food, music and fun - and FREE...and it gives the neighborhood kids an opportunity to hear about Jesus, and have a positive experience at a church.
Here is a picture of the kids.....
Thanks for the kind words of encouragement re: our finances. Honestly, I try not to bring the topic up on here too much, I realize it's not good manners to talk about money. But the bills that pile up are a very real part of childhood cancer, and with leukemia treatment lasting over 3 years, which is longer than most cancer treatments, for many families it is permanently devastating. I am fortunate that Doug and I have held things together, and I know that in the big picture, money is just money. We are grateful beyond words that Andrew is doing so well. We know families that have lost so much financially, AND their child, which breaks my heart. I would give everything for Andrew's health, and that is just what we have, a healthy boy who has fared much better than we imagined, and you cant put a price tag on that. We trust that the same God that brought healing to Andrew, is with us now, that He will get us through, and this tough time is just a season.
I realize too, that there are many people suffering financially, all over the country (and the world)...for many reasons, and it might encourage them to know they arent the only ones. Times of struggle are a part of life, and it's important to remain faithful and thank God for what He has given, what He has done, and know that our real treasure is in Heaven.
Tonight, we are going on a special walk for our friend and neighbor Riley. She has XP, which is a life threatening disease. She can not ever be in the sunlight, as it causes blisters and eventually cancer. It makes for a very lonely life, where she cant go out and have fun with friends like most kids do...even when being transferred from her house to her car, she must wear protective covering. But tonight, we are having the Walk By The Light Of The Moon, which is an annual event in our community. Thousands of friends come to walk for Riley, to raise money for a cure for XP. See....as I've been saying on my blog we really do have an awesome community.
Enjoy the weekend,
love,
kim
Tuesday, November 6, 2007 9:12 AM CST Lynn, and everyone, Im so sorry for not writing since the "helicopter" incident. I had forgotten that it was my last writing. The helicopters flew overhead for a couple of hours that night, searching for flare ups, as well as potential arson suspects, and neither was found. We did have "santa ana winds" again later in the week, which typically puts us at a "red flag fire warning"....but it ended up being cooler, with a lot more fog (moisture) and so things have been nice and quiet on the fire front. I should point out that one of the fires near us is still burning, but on the northern end, so we havent been affected at all this past week.
Things have been busy and hectic here. Besides my part time work, I also have a few side projects that I am working on, basically trying to get extra money where I can, when I can, while still spending time with my kids and minimizing their time with "day care".
When Andrew was sick, we did everything we could to make sure he got the best treatment, the meds he needed, even the expensive zofran to reduce the nausea that created his anorexia. We would have given up our home, everything we owned for his health. Now that he is doing well and off treatment, we are reaping those seeds....as the bills are often overwhelming. Truth is, we took out many loans to cover costs, and now we are faced with paying them all back, which is difficult. So, I have been busy taking odd jobs where I can, to try to make a patch work of paying things. I know some families that have been devastated financially from their kids' treatment, so I cant complain much, but with children's cancer treatment being experimental, the drugs are incredibly expensive, that's just the reality of it. Prayers for God to heal this area, as miraculously as He healed Andrew's body, are greatly appreciated.
As for the kids, they are doing good.
Andrew's school has a Spelling Bee coming up at the end of the month, and he is excited to participate. He is a pretty good speller, so we are looking forward to this new milestone. He has been having increased leg pains recently, maybe he is growing? It prevents us from lowering his pain meds, but that is a continued prayer, for God to heal his nerve pain.
Christine is doing well in school and she and Elise's relationship is really blooming. They seek each other out, and Elise is able to relate to Christine and interact with her more and more each day, it is precious to watch.
Elise has not had her ultrasound yet! Our HMO doesnt have an appt. until the end of November. The doctor said she doesnt want us to wait that long, so she told the radiology department they are to call us if anything opens up.....Ill keep you posted. I will take her in to repeat her labs, probably on Thursday.
Please continue to keep our friends in your prayers, friends that are very critical, whose only hope is the mercy of God. Christian and Alexia The pain these families are going through is indescribable, leaving them a note, letting them know you are praying for them, would do a lot to increase their hope and faith.
As we approach Andrew's "one year off treatment" marker, we are increasingly thankful for what God has done. We will never forget, or never stop thanking Him for the gift that He has given us in healing Andrew's leukemia, and providing such tremendous protection to his body. It makes this Thanksgiving season incredibly meaningful.
love,
Kim
Monday, October 29, 2007 0:28 AM CDT As I speak, a fire helicopter is circling near our home. After about an hour of circling, I called the sheriff to find out what was going on. There was nothing on the sheriff blotter, nothing on the Highway Patrol website.....and the sheriff's dept. confirmed what I feared, it was a fire helicopter.
I drove down, and joined tens of other neighbors, as it was in the nature ravine near our house. Apparently there were a few small fires, and once they were put out, the helicopter continued (and is continuing now) to search for an arsonist(s). The firemen are on foot, scouring the hills, looking for who may have started the fire(s).
The helicopter is even with our bedroom window, so we can sit and watch him circle around....
After all that has happened to our state this week, it is sick to think that some depraved person would seek to inflict more harm and tragedy.
As for the major fires, the one to the south is now contained, and the one to the north is burning further north, away from us. The air has cleared somewhat. We even had a few drops of rain Saturday morning, which was totally unexpected.
The kids all have terrible coughs, and my sinuses are pretty thrashed....but we should all be fine soon. School resumes tomorrow, as do sports.
Speaking of sports, Andrew swam in a meet on Saturday morning. He really enjoys himself. There were 3 heats for his age, so I dont know if he will get a ribbon...and it wasnt his best time, but he made us very proud.
So things should get back to normal around here this week. We continue to pray for the families devastated by the fires, and for those fighting the flames and the people still in the path of the fires.
love,
kim
Friday, October 26, 2007 3:45 PM CDT The snowflake border is just wishful thinking...it actually feels refreshing to look at it.
Fire update....
A brief geography lesson to those from out of the S. CA area.... Orange County is just south of Los Angeles County, and San Diego Count is just south of the OC. Since we live in South Orange County, we are not far from the SD County line, and a pretty good distance from LA (hour or two drive). And while we are near the SD line, it takes a good hour to get into the heart of SD, a lot of the area in between is coastal communities and Camp Pendleton Marine Base...oh, and a nuclear plant, San Onofre.
I think its one of the most beautiful places on earth...and havent ventured out much, but I cant imagine much better than a mild climate, in the mid 70's year round, with cool ocean breezes, blue skies, and where we are, the traffic is much less than the big cities.
Orange County gets the major LA TV and radio stations..when we watch the evening news, it's all about Los Angeles, it takes something pretty special to get a news crew to drive down to OC. And even though we are near to San Diego ,we dont get their news....
So, when the fires first started last week, it was the Malibu fire (northern LA) that got everyone's attention, most television programming was interrupted for round-the-clock coverage of which famous person was evacuating their beach mansion. We heard dribbles about the Santiago fire here in OC, but once the Malibu fire was out, we had to wait until regular news shows for updates.
San Diego has done a fantastic job of reporting on their fires....but we dont get their tv channels. I have been glued to their news radio shows trying to get updates on the Camp Pendleton/San Clemente fire...it technically started in San Diego, but has burned into Orange County...we could see the flames earlier this week, and definitely are getting their ashes.
Now that you have the picture, let me just say that it has been frustrating trying to get information. It's disheartening to see flames both to the north and to the south, and have ashes falling like snow-flakes, and not be able to get up-to-date info.
All the schools have closed here. So have the athletic programs. The only time we were outside, was to have our Christmas pictures taken, which was a situation in itself....which I am hoping to vent about on the other website
The kids all have developed horrible coughs from the smoke that seeps into the house, and my sinuses are burning.
We are thankful that we were not in danger, and that things seem to be taking a turn for the better. We have been so consumed with trying to gather our own information, through googling fire websites and driving out to check the perimeter of flames...and we are tired. Maybe the lack of oxygen has contributed to that, but we are tired, truly.
This weekend, we are going to relax. Andrew has a swim meet tomorrow morning. They havent had any practice this week...we will travel to a pool in Huntington Beach, about 25 miles north along the coast...probably one of the best places to have been to avoid the soot and smoke...so Im hoping the air quality is clear...it usually is best at the beach. Ill let you know how Andrew does.
And, Im still waiting for Elise's ultrasound, but she is feeling great..Ill keep you posted.
Prayers to everyone suffering loss and devastation from the fires, and our huge thanks to the brave firefighters that risk so much for us.
love,
kim
Wednesday, October 24, 2007 8:55 AM CDT Well, Grandma J returns to Texas this morning, and she probably cant get out fast enough. (and for those confused, yes, this is her 2nd trip out in a month.)
Last night we went out to dinner, at a restaurant about 4 miles north of us (Wood Ranch BBQ) and BBQ it was! The "irvine/santiago" fire could be seen from the restaurant. Afterwards, Grandma and the kids headed home, and Doug and I drove north to see the fire. There were hundreds of people gathered, watching the fire move south. We calculated that it is about 7 miles north of our house...So, probably safe from the fire, but the ash and smoke makes it hard to breathe.
Getting ready for bed, I could see an orange glow SOUTH of us....(the Irvine fire is north of us).....With Grandma J and the kids asleep...Doug and I rode down to see what was going on. The "Camp Pendleton/San Juan Capistrano/San Diego" Fire is about 8 miles south of us, and we could see the flames as they crest over the mountain ridge. There were dozens of cars just sitting watching the flames, understandably this makes it hard to get comfortable and have a peaceful sleep.
We didnt get to bed until about 1:30am, and were awakened at about 5:30 by helicopters. The sky is still so dark (it is now 7am) as there is thick black smoke to the north and south. I got out and drove around a bit (and now my sinuses are blocked and my nose is running....thanks to the ashen smoke)....the fires are both still raging....the freeway has been shut down south of us. And while there is no fire close to us at all, having raging infernos on both sides of you....not to mention living in an area that is situated in the midst of brush (we are in a relatively new residential community, in an unincorporated part of the county, and there is a lot of wilderness on all sides)...well, it's just uncomfortable. I want to hunker down, to pack up my things to be ready to flee....ALTHOUGH THAT IS NOT ANYTHING WE NEED TO DO, it's just that it feels unsafe. Not that there is any place to run to ...the entire southern half of the state is on fire.
Doug is going to work....the Irvine fire is only a couple miles from his office (he works in Irvine).....
Much has been shut down in the area....and Im of the belief that the marketing world should take a break too.....but I guess business folks think differently than moms.
Im debating keeping Christine home from preschool...which is about 4 miles north of me. She would be safe at school, but I dont like my kids being too far away in this situation. Luckily Andrew's school is in our neighborhood....although, with the way my nose has reacted to being in the car for 20 minutes...I dont know that anyone should go outside at all.
OK, that's my fire update....we have received a lot of calls and emails from family and friends, checking on our safety.....
WE ARE SAFE, and NOT IN DANGER......but we can see fires north and south of us.
If you need to call.....I lost our home phone, thus the battery has died and it no longer rings.....so, if you need to call, try me on my cell....or via email.
Stay safe!
kim
Monday, October 22, 2007 1:37 PM CDT Hi Everyone,
We had a fun filled birthday weekend.
Here is a picture from Andrew at school. His teacher has him pick one boy and one girl to come up and pray for him...it was very sweet to hear his friends ask for God to give him many more healthy birthdays and thank God for his friendship...Im so thankful that he is able to attend this school, and for the Christian influence it has on his life.
Later that night we welcomed a host of spies..and they went on a fun mission around the neighborhood....they found the treasure ( a duffle bag full of supplies to make s'mores) and it was my intention to have them roast marshmallows during "cake and ice cream" time...but to be honest, after watching them run around during the earlier BBQ, I decided it would not be in anyone's best interest to have 20 young boys around a camp-fire....so, we stuck to the cake and ice cream....and they seemed to have plenty of sugar to fill up on.
Here is a picture of the group as they were preparing to go out on their mission:
A handful of the boys stayed for a sleep over, where they watched Spy Kids 3 - in 3D. This part went very smoothly, and all the kids fell to sleep during the movie. In the morning they woke up happy and well rested :)
And, in case one sleep over wasnt enough for my 7 year old....he and Christine had a sleep over with Grandma J on Saturday. She was back in town, briefly, for some birthday celebrations....and to avoid any rules that I might lay down, she took the kids to a hotel, so they could eat junk, drink soda, stay up late, and bring food to bed...all the kinds of fun stuff kids and grandma's like to do. They had a great time!
We are now moving forward with life, amidst a lot of smoke and dust, as Southern California has a number of fires right now...none close enough to make us worry..just close enough to have the dust and smoke. We are praying that everyone stays safe and the brave firemen are able to put them out quickly.
Lisa...it was wonderful to hear about the CHOC Walk....we werent able to make it this year, but we had many friends walk, and it was touching to know that there was a team for Alonzo. The boys were diagnosed the same week, and we spent a great deal of time inpatient together....Alonzo was an honor student, who had dreams of becoming a doctor to help other kids fight cancer...he said he wasnt ready to go, and I know his family wasnt ready to say goodbye.....it's very sad and Alonzo is one of the reasons that our family continues to push for research...in hopes of a cure. Im glad you were able to go, and that it was inspiring....we are lucky to have such a fantastic hospital in our community!
PS. Elise is having a terrible diaper rash...and is very sore....please keep her little bum in your prayers. In regards to her ultrasound, I have left a message to make the appointment, but have not heard back.
love,
kim
Friday, October 19, 2007 8:34 AM CDT Today my baby is 7. We will celebrate, all the while giving God thanks for the gifts He has given through Andrew.
love,
kim
PS. Grandma J is participating in the "Light the Night" walk to held fund blood cancer research. She is very close to hitting a fundraising goal.... if you are looking for an organization to support that truly puts the money to research, this is a good one to support. The chemo that Andrew took every night for two years, was developed by a Leukemia and Lymphoma Society researcher! Thanks
Grandma J's fundraising site
And to those who have already donated, thank you very much, it means a great deal to us, and I know to all the families fighting for a cure!
Thursday, October 18, 2007 0:39 AM CDT The past week, I have been struggling with my jealousy. I keep reminding myself that envy is not a virtue, but I cant help myself, Im jealous.
I went to the mall last week, and in every store, around every corner, I had the opportunity to buy something pink. Pink food, pink clothes, pink dishware, pink electronics, pretty much anything, pink. It's not just at the mall, it's at Target, and the grocery store, and, well everywhere. And deep in my heart, I couldnt help be jealous, and wish that I could buy something gold.
October is Breast Cancer Awareness month. You probably know that. Everybody seems to know that, and it's a good thing. I just wish everyone knew that September was Childhood Cancer Awareness month. If you read this page, you probably did know that, but most people didnt.
Im really impressed with the organization and networking that is behind the Breast Cancer Awareness groups.....it is an important cause. My Aunt Connie fought a very difficult battle with breast cancer, and left behind two boys and a husband that really need her. It's a horrible disease and Im glad that so much is being done to increase awareness, fund research and find the cause and cure. Im just jealous.
What will it take for our kids to get some research dollars, research dollars on par to other diseases? Pediatric cancers are the #1 disease killing kids....and while the incidence of other cancers is declining, it's on the rise for pediatric cancers. We already get virtually nothing in organized research funding....seems like for a life threatening (not to mention very painful) disease, that afflicts 1 out of every 330 kids..that we would have more awareness, more funds, be closer to having a clue what causes or cures these cancers.
Did you know the following folks have/had a loved one with a childhood cancer?
Vince Neil (of Motley Crue) -his daughter died of cancer
Steve Harwell (of Smash Mouth - hey now your an all star!) lost his son to leukemia
Cindy Crawford - lost her young brother to leukemia
President Bush - his sister died of childhood leukemia
Edge (of U2) - has a daughter with leukemia
Slade Smiley (Real Housewives of the OC) - has a son with brain cancer
Rod Carew - daughter died of leukemia
Hunter Tylo - daughter had cancer
Im sure there are more famous folks who have been affected by childhood cancer, but we may never hear about them.
Today, I watched The View on ABC, and the entire show had guests speaking about Breast Cancer. One doctor was discussing prevention, and identifying the different types of breast cancers, and knowing which are more aggressive, which demographics are more inclined to get which types, and what might cause them...as well as the resarch behind treatment. And I was jealous.
I wish we had a CLUE what causes pediatric cancers. I wish we knew the different sub-types. Andrew's t-cell wasnt even identified until recently. And until recently, it wasnt treated any differently, which is why most of the t-cell kids died. It wasnt until 2 years ago, that they realized that the t-cell kids will likely not survive without radiation. I thank God that we went against the prescribed treatment, and gave Andrew radiation...if we had stuck to the experimental trial he was following (which did not include radiation), he certainly would probably not be celebrating his 7th birthday this week.
I could speak on this forever...but I wont.
It's October, so wear a pink ribbon, eat a pink cupcake, support the very important cause of fighting breast cancer. And next September, I hope our "troops" are more organized, and you will be reminded about the Gold.
Wednesday, October 17, 2007 6:56 PM CDT Hi Everyone,
We are just home from the clinic, and running off to Andrew's swim practice...but I wanted to post, because I really appreciate all of you that pray and check so faithfully.
Karen B. - hope you had a fantastic vacation :)
Karen S. -Elise has size 2.5 stride rite hi-tops. Even the gal at Stride Rite told me they didnt have smaller than 3.5 (which she tried to sell me, even though they were clearly WAY TOO BIG on Elise.)...but I found one on the shelf that was a 3, and when she went to the back she found the little 2.5. Nothing too fancy, just stride rite :) We miss you!!
So, Andrew's labs looked great...his check up went well too! Dr. Torno checked Elise's tummy again (by hand) and said that her liver is getting smaller. We have the authorization to have the ultrasound, I need to make an appt. So, will try to do that tomorrow.
Off we go...thanks for checking in.....and stay tuned, as I am working on a project for Andrew's 7th birthday this Friday :)
love,
kim
Tuesday, October 16, 2007 9:03 AM CDT It's Andrew's birthday week, so we have been busy preparing for his birthday - a "spy" or "secret agent" party. Im so thankful that he is 7, that God has allowed us to watch him grow and develop, he is really a great kid.
Lately I have been thinking about introducing him to the acting business. I thought about it a couple of years ago...when he was 4, and talked like a 30 year old, but wore the clothes of a 2 year old. But he was really sick and it just wouldnt have worked out.
The recent talent show reminded me that he really is interested in stuff like that - not because he was some great singer...but because he immediately thought about putting on a show, and getting all his friends to be different parts, he likes to put on shows...but most of his friends arent interested, so maybe it would be fun for him to do something like that.
He also really has the skll set; reads very well, animated, not shy....and as much as he works hard at swimming (which he still does, and will continue to do....) because of the damage the chemo has done to his body, he will probably never excel in sports. At least not anytime soon. So it would be good to put him into something where he really would do well.
I went on a message board to see about finding an acting class or agent that works with kids, and it seems most people on the board just wanted to discourage me. INstead of giving me a referral, people told me how hard it would be to drive here and there and not have a life, and questioned whether we could put up with that life. I thought about it, and we did have that life, in a way. We used to have to go inpatient to the hospital, unexpectedly, all the time...any time Andrew had a fever, there we were. We were driving to the hospital (which is far from our house) sometimes 4 or 5 days a week for chemo.....not that such a life was fun, but we did it under bad circumstances, I wouldnt mind as much to do it for a good reason.
People also mentioned that he has to be able to pay attention and take directions.....and wondered if he could do that....Well, not many 3 year olds will climb up onto a gurney so someone can shove a big needle in their back, or lay still while their head is tightly bolted to a table for cranial radiation. Andrew does really well at doing what he needs to do, he is pretty mature that way.
Anyways....Im just thinking about it. Ill let you know how it goes.
Tomorrow Im taking him to the cancer clinic for his check up. We did labs yesterday. I really dont like doing labs at the local lab....they arent as gentle on him.....the cancer nurses are nice and have built a rapport with Andrew...he trusts them. At the local lab, it's goth-phlebotomy students -different person each time...they seem very unsure of themselves and dont seem to make any attempt to be gentle. But Andrew is brave, he sits still, and deals with it.
Ill let you know how his labs turnout tomorrow, and Im not sure if Elise will have her ultrasound tomorrow or not, but Ill keep you posted.
Thanks for keeping us in your prayers.
love,
kim
Saturday, October 13, 2007 11:00 PM CDT Hi Everyone,
Andrew had a fun "Western Day" at school...but the festival afterwards was a "no-go" One thing worse than taking 3 kids to a festival, is having one of them be tired and cranky....so instead of a melt down at school, Andrew had one at home, which was much easier on me. Christine handled it well..she really wanted to go, and it wasnt her fault that we didnt attend, and she didnt cry or complain (like the guy that lost the privilege did.)
Anyways, he has a fun birthday for a friend tomorrow, which he is looking forward to attending.
Christine played her best friends team in soccer today..wish we could play her every week! Christine, typically, doesnt like to get hot and tired..but her BFF is a soccer super-star, and so Christine did a lot of running, just to be by her side :) She had a lot of fun.
Andrew will go to the cancer clinic on Wed., so Ill have his labs done Monday after school. Elise should have her ultrasound Wed. too. Ill keep you posted and I am grateful for all of your prayers.
love,
kim
Friday, October 12, 2007 0:41 AM CDT Hi Everyone,
I got an email from Dr. Torno, saying that she got Elise's labs back...the LDH and platelets are going down, still above normal, but not as much as the last time we checked...which is a good thing. Also, the tumor marker labs came back looking good too. We will do an ultrasound (next week?) but I am very relieved that the numbers are going down. Thank you so much for praying for her.
At one point today, I was cuddling her, and I remembered the feeling I often had with Andrew, that there was a clear spiritual battle going on inside him. I believe that is true with all of us, on some level, his was just more concrete. I prayed for Elise, and I prayed for the other children waging a very real battle, where the enemy is trying to hurt them....friends like Christian and Alexia
Someone once said that cancer is just a biological, random process. Call me crazy, but I dont think so. The Bible says that there is a spiritual battle going on...it goes back to the fall of man in the garden....God has always wanted good for us, not to harm us, but to give us a future. I dont think God ever plans cancer...but just as he allowed Adam and Eve to eat of the forbidden fruit, and as He has allowed other horrible things to happen to innocent people.....He allows it. I think God hates all of the painful aspects of this earth, even more than us, because it wasnt His plan for us. I am thankful that no matter what happens on earth, that Jesus has provided the way for us to be with Him forever.
I pray that God intervenes for Christian and Alexia, healing their bodies here on earth, and allowing them to grow up and be examples of the miracles He is able to do. I am thankful that He intervened in Andrew's life.
Someone else mentioned that they were suprised that Doug took time away from work to attend Andrew's talent show. They may not understand that these are the things we prayed for....the big things and the small things. If 4 years ago, the doctors would have come to our room and said, "When he is in the first grade, he will sing in a talent show, and be doing very well." We wouldnt have believed it, and once we believed it, we would cherish the thought of seeing him as a grown up 1st grader, singing at his school....we think of things that way now..big things, small things. Im so thankful that God heard our prayers, heard your prayers, and we have been blessed to watch Andrew grow up. Please pray that Christian's and Alexia's family will have the same blessings....they need a miracle, but our God is able to do that!
Tomorrow, I work in the morning, and then Andrew is out of school early, as his school is having a Harvest Festival. So, it should be a rip-roarin' time...and speaking of rip-roarin'..tomorrow is "western day" for spirit week....THANKFULLY, Andrew can not win for best dressed...since he already won for "clash day" WHEW! Takes the pressure off of me, trying to scrounge up a hat, scarf, lasso, chaps, boots, etc...cause we dont own that stuff (maybe our cousins in Texas do....)...although when I asked Andrew what he thought he should wear for Western Day, he said, "I could put gold in my pockets" (referring to the gold painted rocks he has)..YEE-HAW!
love,
kim
Wednesday, October 10, 2007 5:25 PM CDT Hi Everyone,
I really appreciate the prayers and wanted to share as soon as possible....nothing really new, but we went to the oncologist, and she reviewed the prior 3 sets of labs. She pointed out many things that looked good, and said she really doesnt think there is any worry. There are a couple of things that remotely could indicate a problem, and her liver is a bit enlarged (although she did not feel a mass - which is awesome)....so she ran more blood work, including a "tumor marker" and also has ordered an ultrasound of her liver, which we will do next week (I suppose) when we take Andrew for his montly oncology visit. I agree that there is probably nothing at all wrong, and am really looking forward to having labs that confirm Elise's good health. We should get the blood work back within 3-7 days (depending on the test).
Now that I have the good news (dont worry, there is no bad news), Ill share my, almost, comedic day.....
After getting all 3 kids ready: Andrew in mismatched clothes, because today was "clash" day of Spirit Week...and he desperately wanted to win, especially after not winning "crazy hair day" with that wig.....and Christine and Elise dressed for school and the doctors respectively, and packed lunches (and food for Elise, as we had a long day planned....)I took Andrew to school, and hurried over to Christine's school.
At the beginning of the year, I told her teacher that I was fluent in Sign Language, and offered to teach the kids some signs if she was ever interested, say for a performance or something. She suggested "senses week"...which, naturally, would be this week. So, I had plans to arrive at 9, and teach a song to the kids during chapel.
So, Christine and I arrive just before 9, which was good, because I hadnt actually finished dressing Elise, she was in her diaper...so, once at the school, I got her dressed, locked the doors, and anyone? anyone? can you guess???
Let me say, that I was going to do my little sign language thingy and promptly rush out to Elise's appt. and then back down here for Andrew's talent show....key word being rush, as in time-table, tight time-table, that would work out as long as nothing came up....so, any guesses??
Yep, I heard someone say it, "YOU LOCKED YOUR KEYS IN THE CAR!"....give that person a prize....you are right!
As I started to call for a towing service (or, call Doug to call a towing service, since I didnt have a yellow pages handy.....) I noticed my phone was about to die...not the day to be phone less, but whatever. So, I used my last call to give him the low-down, and he called for a tow-truck...and I rushed inside, taught the kids, "Jesus loves the little children, red, brown, yellow, black and white.....precious in his sight......"
After our lesson, I went out and shortly there after the tow truck guy arrived. This was all going to work out. Whew!
And when I went to write him a check, he let me know they only accept cash, mastercard of visa. Um....dont have my debit card, and dont have cash....can you really not accept a check? Not only could he not accept a check, but he let me know that policy, was that if I didnt have the $$$, he would need to, (gulp) impound my car!!
Now that I am sitting here, I am thinking up a whole speech about how he doesnt have rights to my car, I could call the cops, you cant take someones car because they owe you $65, etc. etc. ...but at the time, I was just dumbstruck....."but, Ive got to take my daughter to the doctor and....."
And then Jesus walked up, well, really her name is Randa. She said, "I have cash, how much do you need?"
God always works it out, and thankfully this gal, who, btw, appeared to have just been standing around in the parking lot...and left after our exchange of money.....thankfully she happened to be in the right spot at the right time, for me.
So, paid the guy, drove off to the appt. ......Spent from 10-12:15 at the cancer clinic....busted back down here for the talent show at 1:15.....poor Elise hadnt even napped yet, but did pretty good as Andrew and Emily sang their duet. They did a great job. And, icing on the cake, is that Andrew won for "clash" day!!
As a mom, the real icing on the cake, was that he sat so nice and polite while the other kids performed, I was proud of him for that, not an easy task.
So, that was our day...we are home for a break before swimming.
I really appreciate all the prayers....
2 friends that really need a miracle now, are Christian and Alexia I know they would appreciate a word of support in their guestbook, as well as a prayer for God's merciful healing, said on their behalf.
I have cute pictures and will post them later, and will let you know when I get Elise's results.
Thank you for your faithfulness!!
love,
kim
Tuesday, October 9, 2007 11:20 AM CDT Thank you for praying for Elise.
I havent been as impatient and worried as I thought I would be, maybe because deep down I am sure there is nothing seriously wrong. Each time she has had her lab results, I am surprised that there is anything out of the ordinary, and have expected things to be "normal" with each new repeated labs. But they havent been normal when repeated, and so I am really looking forward to getting a full assessment from Andrew's oncologist, so that I can finally rest assured that she is fine.
Leukemia is not genetic, and there is no reason for me to think that she would be susceptable to cancer. However, this whole thing has given me increased empathy and respect for the families of Ashley and Ryan and Brian and Kevin who have gone through this journey with 2 kids. With the odds being 1 out of every 330 kids will get cancer, there are those rare "lottery winners" that get picked twice! These two families certainly do deserve to win a real lottery, after all they have (and continue) to endured.
Even though I am sure Elise is fine, and I have tried to resist worrying, there are times that it creeps in. Yesterday I was playing with her, and she had her typical wide smile, and I thought, "I havent gotten to know her very well yet, I was able to get to really know Andrew, but Elise's personality is just starting to develop, we are just starting to see who she is, if she left us, we wouldnt have had the chance to really know her." of course, I quickly shook the thoughts from my head and scolded myself for even thinking such things....a lot like used to happen when Andrew was very sick and I would imagine what color balloons we would have at his funeral, what songs we would play, what we would include in his casket....it's hard to keep these kind of thoughts at bay when you spend so much time watching kids suffer, and have met so many that dont make it.
But I do believe that Elise will be fine, and tomorrow we go to see our oncologist, Dr. Torno. I know she will run more comprehensive labs, and I am anxious to have her well-experienced hands checking Elise's enlarged liver.
I am hoping to run right out of that appt. in the morning, to Andrew's school....as the talent show is tomorrow. He is singing I Gotta Go My Own Way with his cute friend Emily.
When they were practicing, they were standing singing, and mid-way, spontaneously, the grabbed each others hands and sang it to each other, it was so adorable.
Andrew really wanted to make the backdrop, props, etc. He even brought a chalk board and stuffed animals to Emily's house when they practiced. He put the chalk board on the ground, and it was the "swimming pool" ....as in the movie the song takes place around the pool. So cute!
Today we are going to the mall to get Elise a pair of shoes. Thus far, all her walking has been done on bare feet (it's easier to learn when barefoot, as the ability to grip allows her to be more stable.) But she can walk well now, and it's getting cold around these parts (low 70's) so off we go to get some shoes.
BTW, Yesterday was "crazy hair day" at school....here is Andrew:
He wanted to wear the "snow white" wig, which is black, but it was such a matted mess, that he opted for this Cinderella number.
Thanks for keeping my darlings in your prayers...and Christine is doing well, ear and all.
love,
kim
Saturday, October 6, 2007 0:06 AM CDT Hi Everyone,
Long story short, Elise still has some abnormal results showing up in her labs...I just expected everything would be normal, but we got a call from our doctor (our regular pediatrician is on vacation, but the other gal, who works in the same office, called to go over the results...she also said she had called our regular ped at home, to confer with her re: the next step....) She said that her white blood count is normal, but her LDH (which was slightly elevated) is now even higher. This shows rapid turn over of cells, although nothing conclusive. Her platelets are also very high, in the 800's. I dont know what all this means....especially in light of her liver still being enlarged and "sharp"
She said she called the oncologist on call (a fellow I have never met, so, someone new and learning) and they all decided to repeat everything next week.
Add to the mix, that not only is our ped on vacation next week too, but so is the other ped that has been standing in. So, they want us to see this 3rd ped in another office.
Since one of the issues is the liver, it's hard to really know if it is changed when it is being checked by another new party.
I called our onc, after going through the on-call "fellow onc"...and asking her to call our main onc. She kept insisting that it could wait til Monday, and I kept insisting that it couldnt, "I have been confering with her for 3 weeks about this, she has treated my son for 4 years...she knows me, you can tell her I was demanding, and she can make the choice to call me or not." Of course, she called right away and was very nice. She said that she would see Elise next week, and run a full series of labs..including things not yet checked, and that she would feel more comfortable with her liver if she checked it herself.
So, probably nothing, but what would life be without some pesky thing to worry about? right? Dont want to get to comfortable with life or anything.
Thank you, because I knw you will be praying for Elise, who, by the way, feels great...but I know that doesnt mean anything, except she's a happy kid :)
Christine feels great, her glued ear is healing nicely, and she hasnt complained of any pain at all.
In the meantime, Andrew sent out "confidential" mission assignments to his friends, to attend his birthday party, and he is very excited for it all to happen in a couple of weeks.
Enjoy your weekend,
love,
kim
Thursday, October 4, 2007 3:47 PM CDT Hi Everyone,
Sorry it has taken me so long to update...I have been running busy with the start of the new school year. I have also added some hours to my work schedule, so in addition to seeing clients in the evening, I am working at a drug and alcohol treatment center on Monday and Friday mornings. I enjoy my work, and it is flexible enough to allow me to spend my time with the kids, and participate in volunteering at school, and stuff like that.
Today we took Elise back to the doctor to double check her labs, or should I say triple check them. She was so brave, she gave a slight whimper but it was a much easier time than last week. The labs from last week showed slightly elevated white blood count, along with slight elevations to her LDH and sed rate. We repeated these labs today, along with rechecking her EBV (mono)..even though it was negative last week, it can sometimes take a while to show up in the labs. These probably are just pointing to a virus, and since she wasnt feeling good last week...and is feeling great now, that is probably all it was. However, because these can also be indicators of something more serious, we wanted to check and see if things are now back to normal. I am hoping to have these results tomorrow, but if not, then on Monday.
At today's visit, they noted that her liver was still enlarged, but not as much as last time. So, hopefully that is a good sign too.
Christine has been busy with school, soccer and dance. And Andrew spends his time swimming, when not in school.
I still need to get the pictures up from Grandparents Day....Ill tell you that the kids had a great time with their Grandma J, and it was very nice of her to fly out from Texas for Andrew's school event.
Christine got to spend a lot of time with Grandma at their "spa day" and she always gets the royal treatment when she is with her grandma...toes, fingers, extra flowers and bling on her nails....soaking her feet and having extra lotion. They also did a bit of shopping for some new glamour supplies as well as dance gear. Christine just LOVES going to Target with her Grandma!
The week had a grand finale slumber party, where they slept in the family room, watching movies and eating treats....although no Cracker Jacks were allowed in the family room (I could just see that sticky stuff in my carpet!), which was a bummer for one unnamed participant, but overall I think they had a lot of fun.
Andrew is now gearing up for his birthday slumber party...it's a "Secret Agent" themed soiree, with lots of spy activities planned. He cant wait!
I can hardly believe he is going to be 7. I was so thankful when he turned 5, I remember thinking he would probably never be 5, and now he is 7...God is really faithful!
Please pray for a new friend who was diagnosed with leukemia this week. Natalie Biagi...some of you may know her dad, Rob...my kids LOVE him! He is a Christian children's artist, with really fun music and concerts...and I was sad to learn that his daughter is now facing the cancer battle. Please keep them in your prayers, it is a very difficult time to come to grips with a cancer diagnosis, and so much of the early days are spent in and out of the hospital, where you are surrounded by brave and bald children...some making it, and some not, which can be very hard to see.
I promise to work on getting new pictures up, and to let you know as soon as I hear about Elise's labs. Thanks a bunch for keeping us in your prayers!
love,
kim
Monday, October 1, 2007 1:37 AM CDT we had a great and busy week, with Grandma J visiting.
Im sorry I have not updated, especially since so many have prayed for Elise.
I will write more later, but she is doing great....must have been a bug...God answers prayers wonderfully :)
I have a lot of pictures and stories from the week...but here is Elise, as she just moved into a new "big girl bed" (handed down by Christine, who now has her own "big girl, big girl bed!"
 This is her taking a nap in the bed for the first time, a little confused about which way to go.
 her first night in the big girl bed. She is such a great sleeper!
Ill try to update with all the pics soon.
love,
kim
Tuesday, September 25, 2007 7:56 PM CDT Hi Everyone,
We just got great news...
Our pediatrician made sure that a patholigist looked at the labs, and there are no longer any atypical lymphocytes, and definitely no blasts. She said if I wanted to have the onc read it, she would facilitate that, but I dont think that is necessary, now that the atypical lymphocytes are gone.
She hasnt gotten all the labs back, but from what she did get, she went over them with me, and the highs and lows seem to point to a regular old virus, that we coincidentally managed to get a lab snapshot of, before symptoms appeared.
The original labs were taken Thurs morning (before she received the immunizations..so it isnt from them)...and she didnt have any symptoms at all until Sunday....so, I think we just got labs during that window when her body was gearing up to fight something.
The pediatrician will keep me posted as the other labs come in, but we are both feeling pretty good about it.
Thanks so much for praying with us through this...I kept trying to remind myself that when kids get a fever, etc, t's not a big deal, we just dont typically get labs as the illness is developing....and sure enough that is the case. It meant a lot to read your messages and to know you were standing in prayer with us, thanks a bunch for the support!!
Speaking of which, her fevers were up to 103.3 last night, and were not coming down even after tylenol and lots of cooling baths. This morning she hit a bit of a reprieve, but then spiked back up to 104.5 earlier this afternoon. It seems to have broke, because she is now fine, and getting a bit of energy back. I am thankful to God for keeping His hand on her, and let's pray she is on the backside of this bug.
Grandma J arrived, and she and the kids and daddy went out to Ruby's for dinner...it's a school fundraiser, so it should be fun for Andrew to introduce her to his friends, and then tomorrow is GRANDPARENTS DAY!
Thanks a bunch to our friends for helping out with the kids and shuffling them off to practices today, and for just offering to help, it really took a huge burden off of me.
Andrew did a timed 500 yard swim today, apparently on top of additional work out yards.....it will be his baseline time, so he can only get better!
Ill keep you all posted as labs come in, and also about the fun the kids are having with their Grandma.
Enjoy your night.
love,
kim
Monday, September 24, 2007 5:47 PM CDT This week is a very important week. On Wednesday, Andrew will have "grandparents day" Grandma J has attended all of his grandparent days in the past, and he was worried that he wouldnt have a grandparent, now that she has moved to Texas and Doug's parents live in Georgia.
Andrew was sad that he doesnt have any California grandparents, and worried about the day...he called up Grandma J and asked if she would come out. Thankfully she said, "Yes, I wouldnt miss it for the world." or something like that.
Her plane touches down tomorrow afternoon, and there is a busy itinerary set up, complete with a spa day for Christine and a big slumber party Friday night.
The kids are looking forward to it, counting down the days, and hours and minutes....
Today we took Elise back to the doctor to repeat her labs. Not quite as easy as the first time, where she just sat quietly while the viles filled up. This time, she fought and screamed as he drew from her left arm, and after she pulled away, he tried her right. He dug around a while and couldnt get anything. I told him it was really important to keep trying, so we went back to the left, and blew the vein. Then he said he couldnt get any more.
I went back to the doctor, and she said he has to get it. So we went back to the lab (luckily this lab is in the doctors building) and tried her left arm for the 3rd time. Elise didnt like it and put up a good fuss, but he got the rest of the blood.
The doctor and her nurse were very kind....the nurse, Margie, whom we adore, said she thought about us all weekend, knowing that we were worried.
The doctor also said that both today and last week, Elise's liver felt "sharp". I had mentioned that I thought it might be a tad distended...or perhaps it was just that she had the organs of a One year old scrunched into her little belly....so she checked and said it felt "sharp"...not sure what that means...not sure if I want to know.
She is doing quite a bit of labs. She showed me that her "atypical lympohcytes" were at 28 percent, much higher than they should be. So, hopefully the new tests will get to the bottom of things.
Elise has actually been feeling icky since yesterday, with a fever and fussiness, but I think it is from teething...but am not going to try to figure it out now.
Thanks for your prayers, please continue asking God to protect her little body, and to fight off whatever it is that is going on.
love,
kim
Sunday, September 23, 2007 0:41 AM CDT Hi Everyone,
We have had a bit of a crazy couple of days.
I took Elise for her well check, as I think I mentioned. The doctor was concerned that she is underweight (a few pounds below the chart) and she ordered some blood tests.
I was not too worried, because Elise is a healthy, hearty eater, who just happens to be very active and likes to practice her new walking skills.
Yesterday, we were getting ready to go to a concert, (Jana Alayra)...a concert that the kids had lost and re-earned about 20 times....but in the end I let them earn it back AGAIN. It was about 5:00pm and my phone rang. It was the pediatrician.
I thought it was odd for her to be calling me, especially at that time....
She said she had been trying to get a hold of me, but had been calling on our house phone (which is lost, and dead, so, God only knows who else has called....I digress.....)
Now I really started to take pause...why was she trying to get ahold of me? She wouldnt do that unless there was something important.
THEN, she said, she had been trying to get ahold of Dr. Torno....WHAT? DR TORNO IS ANDREW's ONCOLOGIST, WHY WOULD SHE BE GETTING AHOLD OF HER?
She wanted to confer with them as MOST of Elise's labs came back fine...
(I was just waiting for the hammer to fall, as you dont call the oncologist because most of the labs are fine....)
but, she said, she has a high amount of reactive lymphocytes.
It was like I was dropped back in time.....the way I learned of Andrew's cancer was on the phone, when the doctor read my his results, and told me his lymphocytes were high.
She said that she couldnt get ahold of Dr. Torno, but spoke to Dr. Ruben (a fellow...which is a doctor getting her oncology training.) and Dr. Ruben said that we should redo the labs next week.
Then she went on to assure me that Dr. Ruben said it isnt leukemia or any type of cancer.
I was sort of stunned....and despite the reassurances, there was just no way I was going to get through the weekend, let alone next week, without getting more answers.
I called the hospital and had Dr. Ruben paged (she was the oncologist on-call)...and I never got my call returned.
I went to the concert with the kids, we met Doug there, and at about 7:00 I tried again. This time Dr. Ruben called back.
She said the labs had noted high lymphocytes, but no "blasts"...and blasts are the cancerous cells. She went over the different things that it could mean, mostly some infection or fighting a virus....and she said that if the labs continue to show a problem, then they might want to see her, but not at this point.
I asked her why our pediatrician (who is an amazing doctor and teaches pediatrics at the medical school) would call the oncologist if the labs merely signaled an infection?
She assumed it was to be safe, because of Andrew's history (although leukemia does not run in families.)
I did feel better after talking to Dr. Ruben, however, Im still puzzled by the whole thing.
Elise is happy, vibrant, active and has not shown any sign of illness....I guess Ill just put it on the back burner and wait to have her labs done next week (MONDAY) and Ill insist that they be done STAT.
Please keep her in your prayers. I am sure it is nothing, but even the slightest thought of going through some medical journey makes my heart and mind hurt.
Also, Chili's Restaurants are having their annual, national fundraising night to fund pediatric cancer research. If there is a Chili's near you, please consider enjoying a dinner out....it will be a treat for you, and definitely a big treat to the kids and families that are facing childhood cancer.
love,
kim
Thursday, September 20, 2007 5:51 PM CDT Hi Everyone,
We have been busy.
Andrew had his labs earlier this week and went to the Cancer Clinic yesterday. Everything is looking good. He had a giant, and I do mean GIANT, canker sore on his tongue, but the doctor said that his labs looked good and it should go away soon. It didnt hurt him as much as I would have expected, probably due to the pain meds he takes for his neuropathy, so that was a good thing.
Today, I took Elise for her "well baby" check up. She hasnt been in ions, because I get too bogged down with doctors appointments, and unless someone is sick, it gets relegated to the bottom of the priority list.
I dont get my kids all their shots, some things, like Hepatitis B, seem ridiculous to me. The way to get Hepatitis B is through unsafe sex or IV drug use, and since my kids are neither crack addicts or prostitutes, I just dont see the point. I asked the doctor why they give it to new babies, since they clearly are not at risk, and she said that they want to make sure the ADULT population is vaccinated, and the best way to do that, is to give it to everyone as a child. Um, I guess I see the logic, sort of, but no thanks. If my kids want to choose a high risk life style, then that will be one more thing they can add to their list of things to do...but I just cant see giving an unecessary injection of an infection to a baby.
So, they dont get all shots, and the ones they do get, I give at a slower pace...spacing them out a bit more.
Once Andrew got sick, we stopped all of our live vaccines anyways, and so, Elise (and the rest of them are very behind on immunizations.)
I took her today, to give her a couple more of them, ...she hasnt been since she was 2 mos old!! She has been to the doctor for congestion, etc, but not for her well baby shots. Oh well.
Today we weighed and measured her, and she has dropped below the weight chart.
A few people have said, "well, your kids are all small." Truth is, they have always been in-between the 25th and 50th percentiles. Christine looks small, but she is currently at the 36th percentile for height and the 40th for weight. Andrew was always in that range too, until treatment stopped his growth. If he would have stayed on the same course, he would be 47 inches, instead of 44.
Elise is in the 40th percentile for height, but a few pounds below for weight, at only 17.8 pounds.
This is odd, because she eats so much. I went over her diet with the doctor, who said that it sounded like plenty of food....in fact, I once had a baby sitter comment that I was feeding her too much breakfast (and when I came home, she hadnt given most of it to her!) but Elise eats a lot, and moves a lot, she is very active and burns up her calories quickly.
The doctor took a urine sample, blood tests (she didnt even wince!) to make sure everything is ok.
The nurse commented, "she wants to rule out 'failure to thrive'" and it hit me, "failure to thrive????"
When I worked at the orphanage, we had kids who were 'failure to thrive'....2 year olds who looked and acted like 6 months old, because they had not developed due to neglect. Failure to thrive kids are behind developmentally, not just small in stature.
Elise is walking, chatting, and very alert and upbeat...she is not a failure to thrive.
It can never hurt to have labs done, but Im sure she is just too busy burning up the rug with her new walking skills and will get back on the chart soon.
In any case, we are off to swim practice.
Thanks for keeping Andrew in your prayers and please watch the video here, and pray for the families that are faced with childhood cancer.
cancer kids video, please watch it all, even if it is hard, those of us that have lived through this were never allowed to look away.
love,
Kim
Sunday, September 16, 2007 9:05 PM CDT Hi Everyone,
Now that September is half over....I thought I had better get on the ball and annouce that September is Childhood Cancer Awareness Month.
For those of you that have been visiting for a while, or who surf the caringbridge wave, you are already aware that yes, kids get cancer, and yes, it stinks.
But for those that dont know....and even for those that already do....let me share just a little bit more:
Here is a video put together by moms from the online-support group that I joined....if you are a "regular" you will probably recognize many of these faces.
cancer kids video, please watch it all, even if it is hard, those of us that have lived through this were never allowed to look away.
It's also a good time to get on my soap box, ok, ok,....it's a very tall ladder....and I even use a megaphone....but Ill tell you what really stinks about childhood cancers.....
The media likes to report that "survivor rates are improving" and if you listen to a St. Jude informercial, you may even here that success rates for leukemia are approaching 95..and aside from that last statistic being quite inflated, there is much more to the story....
The majority, basically, almost all funding for cancer research goes to adult cancers. Childhood cancers are different and unique. Even leukemia, which effects children and adults, is different in kids. It has different causes (for kids it is unknown) and different treatment.
Most adults are on a tried and true "protocol" (treatment plan)...that doesnt mean it always works, but it means that there is a lot of research behind it. Research that, generally speaking (as it is different for all cancers) has been able to identify the cancer and find what chemos/treatments work and which ones dont. Research that gives insight into how the cancer develops and responds.
For kids, there just isnt the research. Andrew's type of leukemia was only discovered recently, and for the most part, research has not been able to separate out the different characteristics from children's cancers, at least not enough to know how they work or respond to treatment.
This is the reason that almost all kids are on experimental trials. It's the reason that Andrew got 13 different types of chemo, instead of 1 or 2. With research, they might be able to identify which chemos would work, but since they dont know, they just blasted him with the entire cookbook.
It is the reason that if you were to look at an adult with, for example, leukemia and a child, and you compared prescription bottles, you would say, "wow, the kid gets more chemos, at HIGHER DOSES THAN THE ADULT, for a longer period of time." An adult typically has a year of chemo, Andrew had 3.5.
I have read research that shows that attempts to increase adult treatments, in efforts to improve their survivor rates, fail, in part, because the adults arent compliant with treatment.
If you were trapped in a cave, and the only way to survive was to cut off your own leg, could you do it? Could you take that knife, and cut, cut, painfully? I dont mean a quick whack, but could you continue doing it over a long period of time? I couldnt.
Many adults would not continue with the treatment that made them so sick, they just couldnt do it. Even if it meant saving their life.
Recently I watched a show, a documentary of sorts, on tv. The woman was going in for her scans, and she broke down sobbing, "I havent been taking all my meds, they make me too sick, and now I worry that my scans will show the disease has spread." Yep, I totally get that. It's like slowly cutting off your leg.
My point, is that kids dont have a choice. Yes, their survivor rates have increased, in part, because they are forced to take what makes them sick. They have no option but to take the pills that cause their nerves to fry, their digestive tracks to be scarred, their bones to literally wither away...all of which is painful. They dont have a choice. Thank God.
I remember early on, when Andrew wouldnt take his liquid meds (and we hadnt yet taught him to take pills.) Those were the days very close to the time when the cancer wasnt responding, the days that relapse was a very possible reality. Thankfully, Andrew had parents that couldnt truly feel his pain, and just wanted him to survive.....and we did everything, even held him down and forced the meds into his mouth. We knew it's what he needed. Im glad it was never left up to him.
So, survivor rates have improved, but the intense dosages of many chemos, over a long period of time does have it's side effects.
The first wave of survivors are just now being studied. Twenty years ago, when survivor rates were low, they didnt bother to study those that lived. Once treatment intensity was increased, and kids began to live, they started following those kids to see what life would be like for cancer survivors. The first studies were published in the past year or so, and the truth is, by their 30's, most of them have serious or life threatening issues.
Dont get me wrong. Id rather have my Andrew alive, and with side effects, than not here at all. I am very thankful that he is here with us and that science and GOD have allowed him to get better. But it is a myth to think that, as the media would have you believe, Kids are surviving more and everything is wonderful.
Kids arent surviving because they have gotten closer to figuring out how to cure pediatric cancers, kids are surviving because they are enduring more....and in the end, suffering more, and while they are living....there are many more long term, life threatening side effects than there were 20 years ago.
Please keep this in mind when you think about kids with cancers, especially when you hear that more are surviving.
I would love for pediatric cancers to get more research dollars. We are left out in the cold, as the major organizations dont give money (or less than 3to the kids.
I wish our survivor rates were improving because they found the genes responsible, or they found the environmental causes, or they figured out which chemos work best for which cancers....that would be moving us closer to the cure, really.
Here is some information I pulled off of Christian's site
Kids Get Cancer Too!
Cancer in children is more common that most people realize. Childhood cancers behave very differently than adult cancers and the survival statistics are not as promising. Furthermore, the incidence of childhood cancer seems to be increasing. Please join us in increasing awareness of childhood cancer facts and statistics.
-Cancer is the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents.
-One in 330 children will develop cancer before the age of 20.
-On average, 46 children are diagnosed with cancer every day in the United States.
-Approximately 12,400 children were diagnosed with cancer in the year 2000.
-Each year, about 3,000 children die from cancer - more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.
-Only about 20f adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80f children are diagnosed with advanced disease.
-In the past 20 years only one new cancer drug has been approved for pediatric use.
-Only 3 f the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That's 3 or ALL kinds of Pediatric Cancers combined!)
-The incidence of childhood cancer is increasing. The cause of this is unknown.
-Pediatric cancer funding is nominal in comparison to other more publicized diseases such as pediatric AIDS or juvenile diabetes which increases awareness each year.
-Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and exposure to cancer-causing agents. The cause of most childhood cancers in unknown.
-Approximately 70f children with cancer participate in research trials compared to only 3f adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research.
-The government recently CUT the budget for Childhood Cancer research.
-As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year.
-The symbol for childhood cancer is the gold ribbon.-
How You Can Help:
Wear a gold ribbon.
Have a car wash, garage sale, bake sale or any special event and donate the proceeds to the childhood cancer organization of your choice.
Go through old video tapes, DVDs and CDs to donate to your local Children's Hospital
Become a Partner in Hope with St. Jude. The money goes to research. www.stjude.org
Get involved with or donate to Habit For Hope. This organization houses families and does things with and for families. www.habitatforhope.org
Get involved with or donate to the Jake Raborn foundation. This foundation is set up in memory of our little angel friend, Jake in North Louisiana, and it helps with family expenses that go along with childhood cancer. www.jakesfoundation.org
Donate to Caringbridge to help this organiztion to help families communicate.
Ask your Student Council or PTO for help in getting your (or your child's) school involved.
Get your church youth groups involved.
Host an Alex's Lemonade Stand.
Educate youth by having them donate their allowance earned for the month of September.
Participate in Locks of Love.
Donate blood and or platelets.
Join the National Bone Marrow Registry.
Support the Conquer Childhood Cancer Act. Click on this link to find out more and then write to your senators and congressmen.
Organize a drive for Kids Cancer Crusade.
Copy, post and circulate this information.
Support the kids fighting by leaving them messages on their pages and remembering them in your prayers. Pray, Pray and Pray.
If you feel moved to help, Grandma J. is participating in the Leukemia and Lymphoma Society's "Light the Night", and would be grateful for any donation, no matter the size. here is a link to her site
If you have gotten through this entry, please know that it means a lot to me that you were willing to listen, to hear my plea...I know it isnt easy, but on behalf of the many families that are having to endure this as a daily reality, I really appreciate it!
Love,
Kim
PS. I have a new poll on My Blog
Sunday, September 16, 2007 9:05 PM CDT Hi Everyone,
Now that September is half over....I thought I had better get on the ball and annouce that September is Childhood Cancer Awareness Month.
For those of you that have been visiting for a while, or who surf the caringbridge wave, you are already aware that yes, kids get cancer, and yes, it stinks.
But for those that dont know....and even for those that already do....let me share just a little bit more:
Here is a video put together by moms from the online-support group that I joined....if you are a "regular" you will probably recognize many of these faces.
cancer kids video, please watch it all, even if it is hard, those of us that have lived through this were never allowed to look away.
It's also a good time to get on my soap box, ok, ok,....it's a very tall ladder....and I even use a megaphone....but Ill tell you what really stinks about childhood cancers.....
The media likes to report that "survivor rates are improving" and if you listen to a St. Jude informercial, you may even here that success rates for leukemia are approaching 95 ..and aside from that last statistic being quite inflated, there is much more to the story....
The majority, basically, almost all funding for cancer research goes to adult cancers. Childhood cancers are different and unique. Even leukemia, which effects children and adults, is different in kids. It has different causes (for kids it is unknown) and different treatment.
Most adults are on a tried and true "protocol" (treatment plan)...that doesnt mean it always works, but it means that there is a lot of research behind it. Research that, generally speaking (as it is different for all cancers) has been able to identify the cancer and find what chemos/treatments work and which ones dont. Research that gives insight into how the cancer develops and responds.
For kids, there just isnt the research. Andrew's type of leukemia was only discovered recently, and for the most part, research has not been able to separate out the different characteristics from children's cancers, at least not enough to know how they work or respond to treatment.
This is the reason that almost all kids are on experimental trials. It's the reason that Andrew got 13 different types of chemo, instead of 1 or 2. With research, they might be able to identify which chemos would work, but since they dont know, they just blasted him with the entire cookbook.
It is the reason that if you were to look at an adult with, for example, leukemia and a child, and you compared prescription bottles, you would say, "wow, the kid gets more chemos, at HIGHER DOSES THAN THE ADULT, for a longer period of time." An adult typically has a year of chemo, Andrew had 3.5.
I have read research that shows that attempts to increase adult treatments, in efforts to improve their survivor rates, fail, in part, because the adults arent compliant with treatment.
If you were trapped in a cave, and the only way to survive was to cut off your own leg, could you do it? Could you take that knife, and cut, cut, painfully? I dont mean a quick whack, but could you continue doing it over a long period of time? I couldnt.
Many adults would not continue with the treatment that made them so sick, they just couldnt do it. Even if it meant saving their life.
Recently I watched a show, a documentary of sorts, on tv. The woman was going in for her scans, and she broke down sobbing, "I havent been taking all my meds, they make me too sick, and now I worry that my scans will show the disease has spread." Yep, I totally get that. It's like slowly cutting off your leg.
My point, is that kids dont have a choice. Yes, their survivor rates have increased, in part, because they are forced to take what makes them sick. They have no option but to take the pills that cause their nerves to fry, their digestive tracks to be scarred, their bones to literally wither away...all of which is painful. They dont have a choice. Thank God.
I remember early on, when Andrew wouldnt take his liquid meds (and we hadnt yet taught him to take pills.) Those were the days very close to the time when the cancer wasnt responding, the days that relapse was a very possible reality. Thankfully, Andrew had parents that couldnt truly feel his pain, and just wanted him to survive.....and we did everything, even held him down and forced the meds into his mouth. We knew it's what he needed. Im glad it was never left up to him.
So, survivor rates have improved, but the intense dosages of many chemos, over a long period of time does have it's side effects.
The first wave of survivors are just now being studied. Twenty years ago, when survivor rates were low, they didnt bother to study those that lived. Once treatment intensity was increased, and kids began to live, they started following those kids to see what life would be like for cancer survivors. The first studies were published in the past year or so, and the truth is, by their 30's, most of them have serious or life threatening issues.
Dont get me wrong. Id rather have my Andrew alive, and with side effects, than not here at all. I am very thankful that he is here with us and that science and GOD have allowed him to get better. But it is a myth to think that, as the media would have you believe, Kids are surviving more and everything is wonderful.
Kids arent surviving because they have gotten closer to figuring out how to cure pediatric cancers, kids are surviving because they are enduring more....and in the end, suffering more, and while they are living....there are many more long term, life threatening side effects than there were 20 years ago.
Please keep this in mind when you think about kids with cancers, especially when you hear that more are surviving.
I would love for pediatric cancers to get more research dollars. We are left out in the cold, as the major organizations dont give money (or less than 3 to the kids.
I wish our survivor rates were improving because they found the genes responsible, or they found the environmental causes, or they figured out which chemos work best for which cancers....that would be moving us closer to the cure, really.
Here is some information I pulled off of Christian's site
Kids Get Cancer Too!
Cancer in children is more common that most people realize. Childhood cancers behave very differently than adult cancers and the survival statistics are not as promising. Furthermore, the incidence of childhood cancer seems to be increasing. Please join us in increasing awareness of childhood cancer facts and statistics.
-Cancer is the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents.
-One in 330 children will develop cancer before the age of 20.
-On average, 46 children are diagnosed with cancer every day in the United States.
-Approximately 12,400 children were diagnosed with cancer in the year 2000.
-Each year, about 3,000 children die from cancer - more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.
-Only about 20 f adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80 f children are diagnosed with advanced disease.
-In the past 20 years only one new cancer drug has been approved for pediatric use.
-Only 3 f the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That's 3 or ALL kinds of Pediatric Cancers combined!)
-The incidence of childhood cancer is increasing. The cause of this is unknown.
-Pediatric cancer funding is nominal in comparison to other more publicized diseases such as pediatric AIDS or juvenile diabetes which increases awareness each year.
-Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and exposure to cancer-causing agents. The cause of most childhood cancers in unknown.
-Approximately 70 f children with cancer participate in research trials compared to only 3 f adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research.
-The government recently CUT the budget for Childhood Cancer research.
-As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year.
-The symbol for childhood cancer is the gold ribbon.-
How You Can Help:
Wear a gold ribbon.
Have a car wash, garage sale, bake sale or any special event and donate the proceeds to the childhood cancer organization of your choice.
Go through old video tapes, DVDs and CDs to donate to your local Children's Hospital
Become a Partner in Hope with St. Jude. The money goes to research. www.stjude.org
Get involved with or donate to Habit For Hope. This organization houses families and does things with and for families. www.habitatforhope.org
Get involved with or donate to the Jake Raborn foundation. This foundation is set up in memory of our little angel friend, Jake in North Louisiana, and it helps with family expenses that go along with childhood cancer. www.jakesfoundation.org
Donate to Caringbridge to help this organiztion to help families communicate.
Ask your Student Council or PTO for help in getting your (or your child's) school involved.
Get your church youth groups involved.
Host an Alex's Lemonade Stand.
Educate youth by having them donate their allowance earned for the month of September.
Participate in Locks of Love.
Donate blood and or platelets.
Join the National Bone Marrow Registry.
Support the Conquer Childhood Cancer Act. Click on this link to find out more and then write to your senators and congressmen.
Organize a drive for Kids Cancer Crusade.
Copy, post and circulate this information.
Support the kids fighting by leaving them messages on their pages and remembering them in your prayers. Pray, Pray and Pray.
If you feel moved to help, Grandma J. is participating in the Leukemia and Lymphoma Society's "Light the Night", and would be grateful for any donation, no matter the size. here is a link to her site
If you have gotten through this entry, please know that it means a lot to me that you were willing to listen, to hear my plea...I know it isnt easy, but on behalf of the many families that are having to endure this as a daily reality, I really appreciate it!
Love,
Kim
PS. I have a new poll on My Blog
Wednesday, September 12, 2007 11:08 PM CDT Hi Everyone,
Busy, busy week here. Adjusting to my new taxi schedule has been, well, taxing!
Christine started her second year of preschool. Her frazzled mom didnt get a picture of her on her first day of school, or her second. Friday is her 3rd day, and we will try again. She is such a good girl, and already has her name down on the "I can tie my shoes" chart.
I have a very clear memory of trying to tie my shoes in kindergarten. I dont remember my surroundings, just that I was in the classroom, looking down as a fumbled with my shoelaces, and I was aware that most of the other kids could now tie their shoes, and I couldnt. I remember feeling like I was not even close to figuring it out, that it was far too complicated for me, and that I would no doubt never be able to do it. I think it was one of the only times that I didnt think I could achieve something by sheer determination, the shoe laces were like a brick wall to me.
But somewhere over the past 4 decades I figured it out. Glad Christine inherited the shoe-tying-gene from her dad and not me.
Christine played soccer this weekend. It was a lot of running around for her, which pooped her out (I guess she inherited that gene from me.) Her team's practice was cancelled today (again. Im trying not to be too bugged that half of their practices have been cancelled. Ill stop now before this turns into a full-blown rant.)
Andrew has been doing well at school, so I suppose. Havent heard anything negative from the teacher, and since he usually gets annoyed if I ask about school, I just conclude that things are fine. He is back to reading, whipping through the Cul-De-Sac Kids books like ants marching through my kitchen, I think it's time to find him the next set of books.
He did start back up with swim team. He is doing just great. Totally not the slowest anymore, at all. He was the fastest in his lane today, and he felt very proud of himself. He has really worked hard to keep up, and Im glad that it is coming easier for him now.
Elise, well, she is just a little joy. and, Karen.....she really doesnt say much; "Dad" "dada" and every once in a while something that starts with an "m" and could be in the "mom" category. But "whaaats thaaaat?" is uttered all day long. She loves that phrase. she loves it so much she may never even try to say anything else. :0
Tomorrow we are going to do more of Andrew's cognitive tests. Please pray that the results show that he is doing fine with no regression or delays starting to appear.
Our labs and clinic are actually for next week.....see what I mean about keeping track of all of this stuff!
Some of you noticed that I changed the page to include some of Andrew's treatment. Sometimes, now that he has finished the chemo, I imagine that he was a cute, chubby toe-headed toddler, that became a bright and funny elementary school kid. And I forget the in-between.
But Andrew's testimony is not just who he is today, it is what God did for him. It is the hours and days, minutes and years of feeling miserable that God allowed him to endure. It is the cancer, that was quickly multiplying, in spite of the chemo, that God halted. It is the protection over his mind and body that God provided. He is a testimony that God will hear our prayers, even though He doesnt answer them all, He does answer some, and that is one of many reasons that we continue to pray.
While we are thankful and want to show all that God has done for Andrew, we also pray for his friends that didnt find their healing on this earth, and those trying desperately to do so.
Please always remember the families of John, Gregory, Elijah, Tony, Alonzo, Andrew, Amy, Michael, Omar, Aria, Nicholas, Cam, Marcus, Baby Donovan and the many others.....that God would somehow give them the strength to move forward, and with His joy.
Please pray for our friends that are in heavy battles right now, Christian , Jassmine, Alexia , and Bailey.
I would love for every mom to be able to see their child, pain free, enjoying school, swimming, and life. A huge thanks to God that I am able.
Love,
kim
Friday, September 7, 2007 6:03 PM CDT First week down, 40ish to go.
Andrew had a great first week of school. He collected lots of "caught being good" coins, which he redeemed for a yellow jump rope. He doesnt jump rope. Instead, he has one end stuffed into his pants pocket, and the other is a quasi-microphone, he calls it his ipod.
Here is a picture with Andrew, his teacher's aide, and his teacher.
Last night, he came home and put on an awesome, and quite imaginative, puppet show. It was his "homework" and I was to write the teacher a note saying that he put on the performance. That note would be worth a gold coin. Sadly, Andrew's mom isnt as good at doing homework, and when I picked him up today he (very kindly and maturely) let me know that I forgot the note, and he would have had more coins to shop with....but he forgave me :)
Instead of writing the note, I was sweating away, making gingerbread men for his class. Hand carved, as I couldnt find a gingerbread cookie cutter, so it was more like a handicapped class of gingerbread. Hydrocephalic gingerbread, gingerbread with withered limbs, and some that were so terribly cracked they looked like they had been in a gang fight. But they were made with love. I am thankful that I have a first grader, that I can do little things for him and his class, I am so fortunate that my little boy has grown big.
Last night, I was talking to my friend Clara. Her daughter Jassmine was diagnosed with leukemia the year after Andrew. The chemo didnt work, and Jassmine is nearly 3 months post-transplant. Still very fragile, still unable to go into public. Still the most beautiful girl with thick hair covering her face, a result of the meds. Listening to Clara, hearing her share her fears, her nightmares, brought me back to those days. The days when it seemed that death was chasing Andrew, trying to catch him in a frightful game of tag. The hospital floor was filled with children, trying to hide from the bully, cancer. There wasnt always a place to hide. Im so grateful that God spared Andrew, that He has allowed him to grow up, to be a 1st grader, to do all those things that kids should do.
Please continue to pray for Jassmine. Soon she will be having her tests to see if the transplant "took". She is also having a lot of stomach issues, as well as suffering heart damage from the treatment. Pray that God will heal her, and use her life to share the testimony of His love.
Please continue to pray for our friend Christian . He recently found out that his second transplant didnt work. The odds were slim, but his family was full of faith. They prayed for healing, as did so many of his friends. It is hard to pray, and trust, when you know that God doesnt always heal your child on this earth. Please pray for Christian, for his family, and for God to intervene with a miracle (as He is able to do) and restore this sweet boy, bringing him good health on this earth.
This past week, I took Christine to the doctors, twice. She had been throwing up for a week and a half. Usually once or twice a day, accompanied with tummy pains. She otherwise felt great, laughing and playing. But every now and then she would get the stomack pains and start to throw up. At first, I attributed it to dehyrdation, as she had played soccer in the scorching heat. Then I thought it might be constipation, wondering if she had gone potty while we took our mini-vacation. We let it go for a week, then I took her to the urgent care. They thought it was constipation or a urinary tract infection. We gave her some Miralax (one of Andrew's old helpers, to keep things "regular") and sure enough, she began going potty just fine. But she continued to vomit and in fact her tummy was getting worse. On Wednesday night, the 11th day, she had been up all night, so I took her back to the doctor. Her tests came back negative for a urinary tract infection, so they did x-rays which showed that everything was clear and "moving" just fine. Then the doctor conferred with other doctors and decided to run some labs, to make sure it wasnt something more serious. In my mind, I knew that it was probably nothing, but having labs run, to look for more serious illnesses, caused a moment of fear to wash over me. It's a fear that will always be in the back of my mind, usually for Andrew, but in some ways for all my kids. We went home, and waited, and thankfully got a call at the end of the day that the labs were fine. I am so glad that Christine is healthy, that our family is not dealing with a serious medical crisis. Thank you to all who have prayed for Andrew and our family, I know that God has kept a shield around us.
Tonight, Christine will go and meet her new teacher. She is a "penguin" this year. So is her BFF, and Christine is excited to hang out with her friend again. School will start for her on Monday, and then it will just be me and Elise. Me and little miss, "WHAAATS THAAAAT?"
Next week, Andrew will go for his monthly labs and oncology visit, as well as to do more cognitive testing. Im trying to squeeze in his eye exam (radiation can cause cataracts and eye damage) and still over due to get him to the ENT about his sinus thickening issue.
We are looking forward to a great weekend. Opening day (with pictures) for Christine and her soccer. Andrew will go and try out for the swim team's fall season. We are fortunate to be able to enjoy these things. And the weather has returned to near perfection too.
Enjoy your weekend,
love,
kim
Wednesday, September 5, 2007 0:48 AM CDT It was a banner day today. Andrew had a terrific start to First Grade.
Let's see, where to start......
At the "meet n greet" on Friday, he spied two new girls. It is so funny, because when I walk in a room with him, I know instinctively what he is doing, he is scoping out the girls. Finding a girl to love is always on the forefront of his mind, always has been, ever since I can remember.
Over the weekend, all he talked about was the new girls. Since they are new, I have never had a chance to ask their parents if their pictures can be on his website (I always ask people's permission, and I am especially careful with children's pictures.) So, I cant show pictures and dont want to say their names....Andrew refers to them by their names..... but all weekend it was, "new girl #1 this and new girl #2 that"
This morning, as we were getting ready for school, he said, "Mom, you know how I always have my eye on someone?" MMMM HMMMM, I responded, trying to down play his incessant scheming to find a girl friend that will agree to marry him. "I've got my eye on 'new girl #1' and 'new girl # 2". Yeah, I know babe (YOU HAVENT STOPPED TALKING ABOUT THEM FOR THE ENTIRE 3 DAY HOLIDAY WEEKEND, THE WEEKEND THAT WE ALL STAYED COOPED UP TOGETHER IN THE HOUSE, TRYING TO AVOID DYING FROM THE SEVERELY INTENSE SUN!)...."I hope I get to sit by the new girls." Uh huh honey, that would be nice (UNTIL YOU FREAK THEM OUT BY HANGING ON THEM LIKE A BAD DATE, AND TRYING TO GET THEM TO AGREE TO MARRY YOU.) Anyhoo....he's my boy with the great big heart.
So, at school, the kids line up by class for the pledge. He was standing behind new girl #1 (and his scrapbooking mom got a picture, that hopefully I can show you later, but it will none the less go in his book, with a long journal entry about how much he was fixated on her that first day of school.)
THEN....(get ready for this)...the kids all went into the classroom, eagerly searching for the desk with their name on it. There are 16 kids, 4 groups of 4 desks.....
Andrew went in last (because his scrapbooking mom was making him take pictures outside with his sisters, teachers, etc.) I watched him as he entered, his desk was the very far back corner (maybe his teacher was warned about his gift for gab?)....and guess which two girls he sits next to?? Yep, go ahead, it's safe, say it, "New girls 1 & 2" YOU ARE RIGHT!!
He literally stood there, at the only empty desk, staring at his name on the desk, then looking up at the two new girls, (as if he couldnt believe it!).....I shouted, "hey Andrew" and gave him the thumbs up sign, and he got the biggest grin, and flashed his two thumbs back at me.
When I went to pick him up, we left the class at the same time as New girl #1. I asked the kids, "Did you all have a great first day?" and she declared, "HE LIKES ME!".....yes, yes he does!
He spent all afternoon recounting his day, including, earning a Gold Coin, otherwise known as a "caught being good coin".....he can trade them in for all kinds of stuff, but his sights are set on earning lunch with his teacher.
I think it's going to be a fantastic year!
On that note, a long, fun day, means a boy that comes home tired (and cranky!....he had a meltdown during Christine's soccer practice, and then fell asleep within 2 minutes of being in the car.) He also had bone pain in his legs tonight. Please pray that as the year goes on, that his neurpathy lessens and his body gets stronger.
Here is a picture of the kids right before Andrew went to class. Christine was so proud of him, she held her arm around him as he walked on campus.
You may notice that Elise is (finally, and just for a moment) sitting down. Or that Andrew has lost both of his top, front teeth....and is holding his new Spider Man lunch box. How about that bit of pink poking out from Christine's shirt - that is her mismatched, pink, flowery belt that she managed to get by me this morning...she is all about the accessories.
And as mentioned, Christine had soccer practice after school. She really likes it and is a good kicker. This weekend is her opening game, Ill get some pictures.
Thanks for your prayers!
love,
kim
Friday, August 31, 2007 10:20 AM CDT Happy Birthday Grandma J!
Today Grandma J turns 76, or something like that....she recently retired, put on some cowboy boots and a blouse with fringe and rode off to Texas. The kids really miss her, and are a tad jealous that she is now pouring all of her grandma love onto their Texan cousins. No more sleep overs with candy for dinner and marshmallows for breakfast. Enjoy your day Grandma, and eat some cake for us!
We had a busy week here. It's BACK TO SCHOOL time, and a lot of effort has gone into getting Andrew's "supply list". It's not just a list for any old items, it is very specific....for example, they want 8, fine tip, classic colors, wide tipped markers. I spent 15 minutes scouring over the packages at Target...I found 10 fine tip, and 12 wide tip, I did eventually find 8 but in BRIGHT colors. It has taken us a few days, and many stores, to get these items.
We are to bring the supplies to school this morning when we go to "meet your new teacher" time. I still have a few more, hard to find, items to get.....
The kids both got their new lunchboxes (and in Andrew's case a matching back pack.) Andrew is all Spider Man 3'd out....Christine picked a Barbie lunchbox that is shaped more like a purse. She is really into purses and jewelry (she wear a bracelet on her ankle!) and lots of perfume. Its kind of cute.
Yesterday I met with Andrew's teacher, to share some things with her re: his classroom needs. I also shared the testing results from the neurocognitive battery he underwent over the summer......
As for Andrew's physical issues, fine motor skills such as buttoning his clothes and writing with a pencil cause him a lot of pain. We discussed the plan that we followed last year, of asking him to do his best writing on the first try, and not asking him to redo anything. This should prevent some over extending of his hands. We are going to work on learning keyboard, so that at some point in the future he can do most of his work on the computer. This is common for kids who have gone through chemo, as the nerve damage (peripheral neuropathy) makes it very hard to write for any length. It also brings up that Andrew should not be penalized for not being able to finish writing assignments, but should be given extra time.
Andrew still has a lot of fatigue and weakness, and we discussed how that might effect him in the classroom.
Cognitively, Andrew is doing well in all academic areas (except those with writing....where he scored extremely low). His tests did indicate that he may be starting to have some decline. His IQ dropped 31 points, which is pretty drastic. Also, on some tests, he did worse this time around, when we would have expected him to do better. Many test scores didnt make sense to me...for example, in reading and spelling his scores were in the 99.9 percentile. Yet his "vocabulary" subtest was a 61 percentile. This type of disparity seemed to be happening throughout the tests, and it has brought up a cause for concern.
His teacher was made aware, so that if she notices him slacking off...she will be able to consider that he may be starting to show some learning difficulties. We are going to be doing some more testing to get a better idea of what might be going on, so we can take whatever steps needed to ameliorate the situation for Andrew.
Please continue to pray for him. The treatment to his brain continues to kill off white matter, years after the radiation and chemo. It often doesnt show up for 5 years, and then the kids have difficulty learning new information. We are very grateful for the healing and protection that God has given Andrew over this journey, and we ask that He would have mercy on Andrew and continue to protect him, allowing him all of the gifts that were given to him when God created him.
Here are some pictures of the kids from the past weekend. They had a great time at Legoland.....they both got to attend "driving school" and got a really cool (and greatly cherished) drivers license afterwards.....
Here is Elise watching Andrew drive....she is a stander. When we go to the mall, she stands in her stroller the entire time (prompting many people to approach me to say, "your daughter is standing up!"...really? never noticed.) She stands up in her high chair to eat.....Andrew did the same thing. They like to stand. Much time can be spent forcing them to sit, but it doesnt last, and gets them so worked up that it actually becomes safer to just stand.
Elise did get to have some fun, she particularly enjoyed crawling around in the little water splash area.
I hope you all enjoy your weekend, for those enduring this crazy heat wave, keep cool!
love,
kim
Tuesday, August 28, 2007 0:50 AM CDT Hi Everyone,
Just a quick note to say that we have returned from a little vacation. I had a conference in San Diego, and we extended it and enjoyed some fun activities.....
The big event was going to Legoland. We also spent a day at Seaport Village (on the coast), where we did lots of fun stuff, including riding a bike around...you know the ones where Mom and Dad pedal in the front, the two kids relax in the back, and it has a basket seat up front? The cutest thing, was Elise, with her gigantic helmet, sitting in the front seat....she was, "oooing" and "aaawing" the whole time, and everyone would turn and look, point at her saying, "look at the cute baby!" She weighs 17 pounds, so is very tiny, but with great big eyes peering out from under her helmet...I wish I had a picture!!
I do have other pics, and will put them up....the kids also enjoyed Sea World, and the museums at Balboa Park, not to mention the sheer joy of staying in a hotel, they love that!!
One special souvenir, was Andrew's "crystal geode" (or something like that) which is a rock, that when cracked open, has crystals inside (or is supposed to!!) He is into rocks and crystals and stuff.....he actually has set up a "rock carnival" where he will hammer open the geode, he is planning to invite all his neighbor friends, but he cant yet decide if he should charge a fee for them to see his rocks and crystals (!), he plans on having a raffle, where he can select the person who gets to help him hammer open the geode (did I tell you a geode is a big rock??). yeah, exciting....between THAT, the tooth that came out at dinner - and the ensuing Tooth Fairy visit tonight, along with the "bloody moon" (!!) that is supposed to show up tonight during the eclipse (he and dad are getting up at 2am to see it....)...well it's just a lot of excitement, if you know what I mean.
Ill update more tomorrow, and will include our pictures.
Love,
Kim
Tuesday, August 21, 2007 9:12 PM CDT We were kept busy today......
We were at Andrew's school by 8:30 for what is known as "forms day" You fill out paperwork, get fliers on upcoming info, and find out who your teacher and classmates will be. There are only 2 first grade classes (each with 18 kids) so Andrew was excited to see who was in his class...not that it matters, as all the kids are nice, but he had fun finding out. Like wise, both of the teachers are great, but it was still a surprise as to whom he would have.....and next year it will be Mrs. Long. I dont know her, but I have only heard good things, and Andrew thinks she is nice.
I will be having a meeting with Mrs. Long and the Principal next week sometime, to address some issues with the teacher.....things like his peripheral neuropathy (nerve damage that causes chronic fatigue and pain.) We want to limit his fine motor work, so that he doesnt over extend himself, which would only cause more pain. Most kids with the neuropathy use keyboards, but he isnt ready for that at this point. We dont want him penalized for working slowly, as he cant write quickly. Also, he may still need some rest periods, as he is still taking a nice long nap every afternoon, and his body really needs the rest. We will, of course, go over his academic and cognitive testing, with some info about watching for changes. Nothing too serious, but just important things for his teacher to know.
Afterwards, we went to the clinic. They called me last night to change the appt time AGAIN. One huge issue (IMO) is that our oncologists are frequently pulled and asked to spend a week at two neighboring hospitals (UCI and Long Beach) I really hate this practice, as our oncologists have more than enough patients at our own hospital, they are always overworked, our clinic and hospital are bursting at the seams, and yet they keep pulling our docs to go elsewhere. I wish those hospitals would hire their own docs, and stop spreading ours so thin!!
I told the doctor's secretary that I didnt want to wait another 2 weeks, so they fit us in today. After the school, we drove up the clinic, where we waited for 2 hours before seeing our lovely doctor. She was worth the wait, minus the part of having an active, crawling baby to contend with....who didnt want to sit in a stroller the whole time.
Andrew's labs look good....which we already knew. The doctor does your basic check up, but she also checks his testicles each month, as that is one common place where boys relapse. In fact, it is the reason boys get an extra year of chemo over girls, because of the risk of testicular relapse.
I did discuss the cognitive testing with the doctor. She hasnt seen the report yet either, but we discussed some of the concerns with the outcome and she and I talked about some options, although we will wait for the report before moving forward.
She also told me it's time for Andrew's appt. with the eye doctor. Because he got radiation to the backs of his eyes, it is important that he be checked each year by an opthamologist to check for cataracts of nerve damage, which can happen over time from the radiation.
Im already behind on the dentist and ENT.....not to mention poor Elise and Christine who almost never see a doctor. They cant get their shots yet, but Elise does need a tetanus, I need to try to fit that in soon.
Thanks for checking in on Andrew. He is doing so well, and visits to the doctor where we see all the very fragile kids, is a reminder of the healing God has done in him. Today we saw Michael, who went to camp with us last year. He and Andrew are the same age. Michael's cancer has returned, and he looked very thin today, with a feeding tube in his nose, like the one Andrew used to have, and it brought back memories of very difficult days. We saw dear Jassmine, who is recovering from her transplant. Poor sweetie, the meds have caused thick hair to cover her entire face!! Im not exaggerating, it was very thick all over her face, and it just broke my heart for a 9 year old girl to have to be so sick. Her mom says that she notices Jassmine staring at herself when she is near a mirror, it's very hard for the girls to have their looks change so much. Of course, the outside is not the important thing, what Jassmine really needs is prayers for healing from this cancer. I told her mom to make sure to take a picture, because in 10 years, when she is a healthy beauty queen, she wont believe what she went through as a little girl.
Enjoy the rest of the week....
love,
kim
Ill have a new poll at my blog tomorrow.
Monday, August 20, 2007 0:13 AM CDT We have had a rip roaring weekend here.
Friday was the premiere of High School Musical 2, which we sat and enjoyed as a family. Saturday, Andrew spent the night with his buddy. It was a birthday/camp out, complete with bug hunting, s'mores, a scavenger hunt, and naturally, sleeping out doors in tents.
Andrew actually lost the right to attend this party a couple of weeks ago when he had horrible behavior. However, the friends mom said that her son would be heartbroken if Andrew couldnt go. It actually became a win-win-win situation, as I have held it over Andrew's head for two weeks, allowing him to earn it back. So, after being on his best behavior he was able to go. It was a bonus for the rest of us, because Christine (and Elise) had a special night with dad, which is what Christine lives for....and I got to go out scrapbooking, and everyone was happy.
Of course, Andrew came back, sleep deprived, and was a bigger grouch than ever! Luckily a long nap today turned things around for him.
tonight, we watched HSM2 again, for their sing-a-long episode. The kids loved it....
This week Andrew will find out which teacher he has for first grade, and which of his friends will be in his class.
Thanks for keeping us in your prayers, and for praying for our friends. As Alexia's brave life on earth begins to wind down, please pray for her family, that God would provide them with the strength and support to get through this difficult time, cherishing their time together, before Alexia is called home to Heaven.
love,
kim
Thursday, August 16, 2007 9:52 AM CDT here,s a picture of me. i had a bankuet for swimming. iwas holding a trothy and a medal. my favorite part of swimming was having fins when we kick boarded and did free style. christine liked the snacks at ths snack bar me too. i,m going into first grade and i feel proud.
love, andrew
Wednesday, August 15, 2007 3:30 PM CDT AH! Karen, thanks for reminding me!
Andrew had his labs drawn last week, so that they would be ready for his Monday appt. But we didnt keep the Monday appt.....so I forgot to update. We did, however, call for his lab results, and they are all clear :)) Thanks for praying!! Andrew faces his highest risk of relapse in the first year off treatment, so as we move through, getting closer to the one year mark, I am continually thankful for each "Clear" that we get. With each month that passes, I let out another sigh of relief, knowing that we are closer and closer to knowing that it wont ever come back.
I guess it's a good thing that I got more wrapped up in his swimming than his cancer :)
Tonight is the big Swim Banquet, and he *should* get a medal for his backstroke at championships. I know he is eager to get his hands on it!!
After a week of feeling like I might have to send my kids off to a desert island, or...send myself, alone, the past two days have been very nice. They are playing nice again, obeying me (most of the time) and generally being the wonderful kids that I know.
It might have something to do with High School Musical. You see, High School Musical 2 is premiering this Friday night, and so, that caused them to drag out the original High School Musical CD, and they have literally been dancing and singing to it, doing shows, dancing, etc. ALL DAY LONG, FROM SUNUP TO SUNDOWN, NO LIE.
Now, I like the music, but it's like being in 10th grade and playing REO Speedwagon over and over again. There's got to be a limit....
But I cant complain too much, as it has kept them happy and frankly, too busy singing to fight and argue.
So, busy week ahead, banquet tonight, and HSM2 on Friday!
Elise is starting to walk more and more, well, really just taking steps here and there, but she is on the move more, cruising around.
Christine has been consumed with her make-up and PEER FOOM (a pronounciation I have never quite heard before), walking around in plastic heels, all kinds of beads, and a cloud of Bath and Body Works Sweet Pea.
Thanks for checking back in.....and Andrew will have his check up next week.
love,
kim
**There is a new poll at my blog **
Monday, August 13, 2007 11:16 AM CDT Hi Everyone,
A quick update from Swimming Championships.....
Andrew swam very well in his medley relay (he swam freestyle), but unfortunately another swimmer did the stroke incorrectly, which disqualified the team.
I believe he came in 5th place (out of 21 swimmers) in the backstroke, and will get a medal. Unfortunately, it was not his fastest time. Had he done his prior best time, he would have made it to the finals.
**Saturday's meet was the Division II championships....This Tuesday, they will take the top swimmers from Divisions I, II, and III for the finals. **
In his individual free style event, he came in 12th (no medal) but it was his best time so far, nearly 2 seconds faster than his previous best time, which is WONDERFUL!!
It has been amazing to see him do well, improving so much, and really enjoying the competition. It has also been a blessing, allowing his muscles and nerves to improve, and allowing us to take him off much of his pain medication. he is still on 200 mg of neurontin, which is a strong amount for a boy his size, and our prayer is to be able to wean him off completely at some time, because the neurontin does cause mood swings and behavioral issues.....at least not as bad as when he was on the higher doses ;0
He gets a few weeks break, and then will begin the Fall swim team, which is 2-3 times per week. Im going to try to get him swimming as much as possible between now and then, since it is so therapeutic for him.
Ill update more later,
love,
kim
PS. There is a contest coming to my blog come check it out.
Thursday, August 9, 2007 10:01 AM CDT Another summer day here....
Yesterday the kids enjoyed a fun day at the water park with a bunch of Andrew's friends from school. Christine also had a play date in the afternoon with her BFF, but that is typically her nap time, and she came home very tired....not to mention that apparently she screamed and cried the whole time at their house, afraid of their dog, so she would run in fear, and dog would chase her wanting to play, she would scream and run more...you get the picture, Im sure.
Before heading off to swim team practice today, Andrew will go in for his lab work. He's not fond of it, but he handles it like a trooper.
This weekend is the championship swim meet. Andrew will be swimming an individual free style event, individual back stroke, and swimming free style in the medley relay (4 swimmers on the relay, each swims a different stroke.) He is excited at the prospect of winning more ribbons (or maybe they get medals, who knows)
On Monday we will have his monthly oncology visit. I still need to get him into the ENT, and also working on some second opinions from his neuropsych testing....sometimes it seems doctors visits are never ending.
The kids are both starting to get back into the school spirit....Christine found out yesterday that she will be in the penguin class, and so will her BFF, so she is glad about that, although she cried (this was yesterday afternoon when she came home tired...) because, she doesnt like the toys in that particular class!
Andrew's school has 2 first grade classes.....so, he is anxious to see which kids will be in his class this year..we find out in a couple of weeks.
Please pray for Alexia as she has relapsed again, after such a tough battle, and now they are just trying to enjoy her final days on earth.
love,
kim
PS. come take the poll at my new blog
Monday, August 6, 2007 6:59 PM CDT Today I took Andrew to swimming practice, and as I sat there chatting with another mom, it hit me. It's August 6th.
On August 6th, 2003, I was at the same pool area...only sitting at the toddler pool instead of the lap pool. And I only had one baby girl, Christine. Andrew and Christine loved the water, and after a busy morning of splashing we went back home for our lunch and nap. Just like today...we went to the pool and came home afterwards for lunch and a nap...but in 2003 I received a call on my drive home from the pool. The Urgent Care doctor was calling to give me the results of Andrew's blood test, and telling me that there were concerns, and he needed a bone marrow aspirate.
Within a few hours I was on the phone with the oncologist, who told me that Andrew had an aggressive leukemia and needed treatment immediately.
The next week is still very real in my mind, the pain, the grief, the hopelessness and fear.
Now, as I look back, four years later, at my son, tanned and blonde, swimming faster each week, doing well in school, healthy and happy, I am so thankful that God brought us through with such victory.
I truly never thought Andrew would fare this well, and I am overwhelmed with gratitude at what God has done for us.
So many of our friends have been lost along the way, or still battle the cancer and it's side effects, that we are truly one of the lucky ones.
Thanks to all of you for the support and prayers over the past four years. The journey has not been easy but it has been made lighter by those who have cared.
love,
kim
Saturday, August 4, 2007 3:11 PM CDT Hi Everyone,
We drove out to Bailey's pancake breakfast this morning. It was great to be able to see him running around, especially since he just was in the hospital for a week of major chemo. Please keep his family in your prayers, and ask for God's healing. The doctors are keeping him on chemo to give him more time, but there is nothing on record that can rid him of this cancer....
On the way home, we also stopped at the post office, and while waiting in the worlds-slowest-line, I stared at the displays of new stamps, super heros. It really got under my skin, because every year, the post office issues new stamps. And every year, they are lobbied heavily to print a stamp for childhood cancers, and so far, they have declined to do so, saying their isnt enough public interest.
Kids like Andrew and Bailey and so many others are the real super heros in life. Ive never seen a cartoon character have to undergo the pain and suffering, for years, and still manage to smile and play.
Recently, Andrew's swim coach came across an article and clipped it out for me. It was about childhood cancers, and how there is virtually no formal funding for them. For that reason, kids go on more chemos, at higher doses, for longer periods of time, than do adults. The long term effects are pretty serious, many life threatening (which we will deal with as we face them.) Over 90 f kids are on experimental trials, while most adults will get a standard treatment that has some research behind it....the kids dont get that, the doctors are literally doing trial and error with massive amounts of chemo, only pulling back when the side effects threaten the kids life. We need funding. With 1 out of every 330 kids being diagnosed with a pediatric cancer, we need funding, it should be of "public interest"...a stamp would be a great way to raise awareness and funds.
And while Im on the subject of side effects, I met with the pscyhologist about Andrew's cognitive testing. The results were mixed, some things have changed quite drastically since last year. Im not sure what to make of everything and will be consulting with another neuropsych for a second opinion, but there is a good chance that the deterioration of Andrew's brain is starting to take effect. It's not a matter of being smart or not, it's a matter of losing your short term memory, your ability to organize thoughts, your executive functioning skills, your attention.
For some that are unfamiliar with cancer treatment for leukemia, in a nutshell...it's important for the chemo to go everywhere, including the brain. Leukemia is cancer of the blood, so the cancer is in all parts of the body, originating in the bones, and circulating everywhere.
Most chemos do not cross the blood-brain barrier (which protects are brain from toxins). Because the cancer often hides out in the brain, safe from the chemos, it is necessary to administer chemo via spinal taps (also known as LP's - lumbar punctures, or IT- intrathecal) So, chemo is injected through the spine, similar to an epidural, and it "washes" the brain.
Now, since chemo kills cells, all cells without the ability to discriminate (one reason we need research!!) while killing off any cancer, it is also killing off white matter, as well as the coverings on the neurons.
Ill never forget one of the first times Andrew got chemo, the nurse was hanging the bag with heavy duty rubber gloves. She said it was important not to get chemo on your skin, as it will eat it away...and if she got even a drop on her skin, she would need to rinse it off for 15 minutes.....thus the need for gloves.
and I thought, oh, and now your going to pump that big bag into my sons heart and throughout his body.
The other issue with the chemo to the brain, is the eating away process continues long after the chemo is gone. The deterioration is degenerative and the process lasts for 5 years or more.
In addition to the chemo on the brain, Andrew had radiation to his brain, due to his high risk of relapse. This is even more damaging than the chemo, it literally just frys the brain....when you hear of people getting radiation to shrink up their tumor...well, same thing going on here to the brain.....
so, I dont really know what is going on with Andrew until I get more info, but please pray that God would protect and heal him.
God has been more than faithful and merciful to us, He has done miracles already in Andrew's life, and we are asking for continued healing and protection, thanking Him for what He has done.
It's also a reminder that our kids need more funding. If you get the chance to donate, please do.
love,
kim
Thursday, August 2, 2007 10:07 AM CDT Let me start off by saying that Andrew did FANTASTICALLY at his swim meet on Tuesday.
Most impressive, was the individual back stroke event. The swimmers started and Andrew remained neck and neck with a boy, a boy who is the best swimmer on the team! Andrew took second, and his time was 33 seconds...his previous time was 116 (from the beginning of the season) seconds! The coaches coulndt believe how he flew through the water. He picked up 2 second place and 1 7th place ribbon. He is very proud of himself and we are so pleased with how well he is doing.
Now to finish up with Elise's birthday pics.....
We took the ferry from Balboa Island (Newport Beach) to the Fun Zone
Andrew and Christine enjoyed lots of fun activities, including bungee jumping...these kids are fearless!
Elise did get to have some fun too....here she is on the carousel, and they had tiny baby horses, how cute!...and the spoon she is holding, well, she has a thing for holding any linear object like a straw, utensil, cord...she likes to carry things around like that.
One thing we all enjoyed was eating dinner afterwards at The Old Spaghetti Factory.
Here is the birthday girl, who seemed to really enjoy getting all the attention from the restaurant staff...
We had so much fun on her birthday (Saturday) that we saved the cake for Sunday, and she enjoyed it!
I want to remind local folks, about the fundraiser for Bailey this weekend.....I hope you can make it.
Saturday, August 4th
8am - 11am
Fire Station # 1 (headquarters)
176 Grand St., Orange CA (chapman and Grand at the Orange Circle)
$5 per person
Thanks for checking in and I hope everyone has a great weekend.
love,
kim
PS. come take the poll at my new blog; www.heartshapedhedges.blogspot.com
Tuesday, July 31, 2007 11:25 AM CDT It's time for me to post the pictures from Elise's birthday party....there are so many that Im gonna have to do it in more than one post...
for today, Ill start off with how we started her special day...opening gifts.
Here she is, with all of her presents before her, excited to get things started.....
She and Christine got matching dresses from Grandma J, along with some "accessories"....I think Christine looks like she just rolled in from a Texas truck stop.
This is Elise's first step! Immediately after I snapped the shot she plopped down on her rear, but I was so happy to have captured this special milestone. You can see her waving around a pink object, those are sunglasses with a headstrap...she was more interested in playing with them than wearing them.
The big hit of the party, was her birthday card from Grandma J, which sings the theme from Jo Jo's Circus when opened; "hey hey, it's Jo Jo's circus".... it really had her moving and giggling.
After the gifts we headed out to the Fun Zone at the beach....which I will update about with pictures tomorrow.
Thanks for praying for our friend, Brendan . Recent scans seemed to indicate the cancer had returned, but after consulting with the team of doctors, they have concluded that they cant tell if there is really anything there at all, and are in the "wait and see" mode. Please pray that this is God's intervention and healing at work, and that Brendan's cancer is gone forever. He has already had to postpone his college career (for which he received an athletic scholarship), and is anxious to continue on with his goals and plans.
Also, while continuing to pray for our friend Bailey, we want to invite those in the local area to attend a fundraiser for his family. The Orange County Fire Fighters are hosting a pancake breakfast...this is a fun way to raise money, but also to show your emotional support for this family....Bailey's cancer relapsed recently and he was not given a good prognosis, however, his family is holding on to their faith that God will heal Bailey, and they could use all the prayer and support you can offer...so please try to make this breakfast if you live in the area:
Saturday, August 4th
8am - 11am
Fire Station # 1 (headquarters)
176 Grand St., Orange CA (chapman and Grand at the Orange Circle)
$5 per person
check back tomorrow for more birthday pictures, and please join me at my new blog where I ramble on about things too insignificant to post here.
love,
kim
Monday, July 30, 2007 1:13 AM CDT HA! Oh dear Lynn.....as if I would ever post a picture of me, post c-section, still with all the pregnancy pounds and the IV fluid bloating to boot! HA!
We all had a fantastic weekend, with lots of celebrating for Elise. She actually took her first steps on her big day AND I got it on camera!! Funny, I got Andrew's first steps on film too...both times it was unexpected....special gifts from God.
I have lots of great pictures, which include our day at Balboa, where Andrew and Christine rode the ferris wheel, did the bungy trampoline, and ate frozen bananas. Elise, of course, sat and watched....but she did have a great day, and I hope she knows how special she is to our family.
BTW, Ive been wondering for a while, if I should start a blog....I feel guilty when I write about non-cancer stuff on this website, but then I think; hey, that's a blessing to be able to tell about fun, normal things, minus needles and chemo and blood transfusions and puking. So, Im still going to keep this sight up and updated regularly....Im also going to keep my own blog, so that I can ramble on guilt free. I hope you'll stop by and visit....and, no Lynn, there will not be a big picture of me on the front page, LOL. The link is at the bottom of this page, or you can go to www.heartshapedhedges.blogspot.com, or just click here
On a more serious note, our dear friend Brendan just got his scans back, and they have found a bit of cancer in his lungs. He is an amazing kid and I want to ask you all to please pray for his healing, and stop by and let him know you care.
love,
Kim
Saturday, July 28, 2007 1:03 AM CDT Happy Birthday My Dear Elise!
I can hardly believe that my "little one" is ONE! That darling little girl, that was called "Baby John" (until the ultrasound showed otherwise) is no longer an infant.
At only 15 pounds, she is a bundle of energy, and right on cue, has been doing a lot of standing on her own this week. Where has the time gone??
One year and two days ago, I was in my doctors office sobbing, demanding that he take the baby out, as I couldnt go on any longer. I asked him if I was his worst patient ever, and he nodded affirmatively. I told him, through my tears, that I had plenty of strengths, but pain management was not one of them, and we were all entitled to our shortcomings.
He also told me (as did Doug) that it was a selfish thing to have the baby before her due date (she was going to be a planned c-section)...well, I was unselfish for much of the pregnancy (including shots in my stomach, twice a day!! every day!!), but we all have our limits, and mine was up!!
BTW, for those of you who live in my area, but dont know what I look like, I was the whale that drove the handicap, motorized scooter in Albertsons to do my grocery shopping, because I couldnt walk the last months of my pregnancy....
anyhoo......on Wed. the doctor agreed to do an amnio to see if her lungs were ready ....
on Thursday we did the amnio (scary!) and her lungs were fully developed
on Thursday night I felt like disco dancing, as the relief was so invigorating!! (not really THAT invigorating, but it got me through one more day)
On Friday, July 28, we went in the morning for the surgery and she was born at exactly 1pm, perfect! and if I do say so myself, not a day too soon!!
The kids were so excited to meet her...
She has been so loved, and cuddled and smooched on....she has done an amazing job at making Andrew and Christine the world's best big brother and big sister. She lights up and squeals when they come in the room...and they cant hug and kiss her enough.
So, today is her birthday...we will celebrate with specially selected gifts (from Andrew and Christine) and a homemade fantastically decorated cake (by Andrew and Christine)...and a fun trip to the beach to ride the ferry and play arcade games and eat junk (to entertain Andrew and Christine).....but it really is all about Elise, and it will be a day to celebrate just how thankful we are to have her in our family.
Elise bubbly, happy, easy going and perfect for our family. We love you so much Elise!!
love,
Mommy and Daddy
Thursday, July 26, 2007 2:00 AM CDT Wow! Wowow-WOW-wooowow!!
You should have seen Andrew swim tonight!
His first race was an individual freestyle. He took off like a bandit, and was ahead of the pack for the first 1/2 of the race. It was a full race, lanes filled with other swimmers (all boys his age)..and I could not believe he was out in front. Of course, just a note...he holds his breath for the first half, and just powers through.
Then he takes a breath, and his breaths are often more of a lingering pause, as he has a hard time filling his lungs....
but he kept going, and by 2/3 of the way, another kid was neck and neck, and in the end, he got 2nd place (red ribbon)..but that is amazing!!
His time was 15 seconds faster than his previous best time. He is just getting so strong, and his stroke is beautiful. If we could just get him to breathe early on, and take quick breaths, I know he could shave even more time off.
He also got an orange ribbon (6th place) for his freestyle relay.
He has another meet next Tuesday, so, we shall see if he gets even faster.
I plan on keeping him in for Fall and Winter swim team too. Year round, basically, he's not allowed to quit, ever. It's been so good for him, and his pain issues, his strength, just really improved. Luckily he does enjoy it, and feels very proud of himself, and has made great friends too.
thanks for all of the kind thoughts and prayers....we continue to be so thankful for all that God has done for Andrew, and hope that any cancer friends reading this, have hope that their child will get through the battle, even better than expected.
love,
kim
Tuesday, July 24, 2007 10:03 AM CDT We've covered a lot of ground in the nearly 4 years that we have had this website....some things very serious, some things not so much (like ants)....but today, I wanted to talk (or rant) about something that is of paramount importance (at least according to today's culture)....
Lindsay Lohan was arrested (again) for a DUI. Now, let's face it, the girl is loaded (pun intended) with probably, seemingly, unlimited amounts of cash. And, she doesnt have much to do except have fun, I get that. I totally get that a young, rich, 21 year old gal just wants to party and drink and dance and flash private parts, I mean, I shared my Rockstar:INXS pic, so you know, I get that she is all about having fun. I even understand that after being cooped up in rehab for the past month, that she needed a "break" from the sobriety (can they drink in celebrity rehab?) and so, going out, partying, totally understandable.
The real issue here,, is not that she was drunk, it's the fact that she DROVE HERSELF! I mean, come on girls, GET A DRIVER!
Even your average high-schooler-going-to-the-prom gets a driver...heck, I dont drink, and I have gotten a driver before (make-a-wish trip, a limo took us to the airport and back)
What is the deal? We know she can afford one, so, that excuse is scratched off the list. It's not like she didnt know she would need one, Im pretty sure the brit-lo-paris crowd KNOWS they are going to get drunk when they go out, especially with, ahem, cocaine found in her pocket, ...it's not like she went out with some friends and got pressured to have a drink, and got carried away...she went out with the intention of getting drunk, alcohol-detecting-anklet be damned! So, why not get a driver?????
Really, this is a mystery that I wont ever figure out. Im sure when I get to Heaven, one of my first questions will be, "why didnt those girls get drivers??" (not) but it is a mind boggling query.
Anyhoo....Im pretty sure that we will now be inundated with minute-by-minute updates of what she is eating, wearing, crying about in jail. I just hope if she tries to manipulate her way out of things, that she comes up with a better excuse than -mental-breakdown-via-claustrophobia. That was just the most ridiculous thing I had ever heard (but it worked, imagine that.)
As for us, in our boringly sober life...we are doing well. The kids had some bbq's and birthday bashes over the weekend. Next weekend is Elise's first birthday (can you believe it?) So, it was exactly a year ago that I was crying, Paris Hilton style....but not about getting out of jail, it was about getting the baby out of me!!....ok, now Im curious and Im gonna go read what I wrote in this journal a year ago, brb.
Ok, Im back, and yep, I was busy having contractions, impatiently preparing for the arrival of Elise. Andrew was on reduced chemo due to low counts from a virus, which was always nerve wracking. We were in the throws of insurance hell with the Kaiser switch, trying to establish continued care for Andrew and I...my, what a difference 365 days make....
Now we have beautiful Elise, good insurance, and best of all, Andrew is thriving off treatment!! God has been so faithful and answered so many prayers over the past year. I am thankful that He hears us and cares about our lives.
This week is another swim meet. Andrew's freestyle stroke is looking so awesome and he is picking up speed too. We are so thankful to be able to enjoy these healthy days with him, he has gone through so much, but has come out like a champion.
Thanks for checking in and for all of your prayers.
love,
kim
Friday, July 20, 2007 3:38 PM CDT Thanks for all of the advice about the ants. Im going to look for that DE stuff to put around the edge of the house tomorrow, and I came very close to powdering everything with cinnaomon....but the real news, is that I broke down and got some raid!
You see, I noticed a trail of ants in the dining room (on a clean table)...upon further look, I noticed that the ants seemed to be following a finely granulated, powdery substance. Then, there was a pile of the salt-and-peppery looking stuff, which was being swarmed by ants. Odd, I wondered what it was...so, I dipped my finger in and picked up a few specs, and tasted them. YUK! It wasnt salt, or pepper, or sugar, or graham cracker crumbs at all. I tasted like a strong chemical, so I thought it was one of those "bait-that-the-ants-eat-and-take-back-to-their-nest" kinda situations, and since my house is so filled with ants, they think of it as their home, and they brought the bait back to my dining room table, you know, made themselves comfortable.....but no! I called Doug, and he said, "oh, yeah, those are their (gulp) EGGS!"
So, I dont know which was more frightening, the image of my house becoming the next breeding ground for ants or the image of the ant ages hatching inside me and having ants crawl out from my eyes.
I then further studied the ants, their trail, and the eggs, and was that the eggs were buried deep into the crevices of the table leafs. I got out my finest paring knife, to try to clear them out, but it seemed that they were stuck. Bazillions of ant eggs stuck in my dining room table! I dont know how long the incubation period is, but I panicked, borrowed some powerful ANT raid, and sprayed down the cracks. Yeah, just where I want the pesticides, on the place where we eat....but I was desperate!
I keep going back to see if new baby ants are hatching, but it appears that I cleaned it all up and they are gone, for now, from that one location.....
And, if the day wasnt crazy enough, guess who showed up as well?
Yeah, a scamming door-to-door guy, yep!
I know we arent supposed to open the door, but I do...and they always start with,
Hey, Im so and so's son, from up the street.
and sure enough, that is what this guy did. and we questioned him, what street? what address? (since we know the neighborhood pretty well....) and of course, this guy begins to stutter, and I break out my cell phone to call the sheriff (they have told us to report these illegal peddlers)....and the guy starts cussing as he walks away, and get this...he is yelling about how he has cancer, and all he was trying to do was raise money for kids with cancer! HA! He quickly took off as I continued my chat with the sheriff's dispatcher.....
But on a good note....
Andrew had a great clinic visit, and all of his labs were good. He will see the ENT soon re: his sinuses, and as for his lung damage....there isnt anything to do, but swimming will help increase the breathing capacity. He is too young to do a pulmonary function test...so, we shall just keep up with swimming.
Tonight is a movie in the park, Charlotte's Web.....a nice way to wind down a busy week.
I hope you are all enjoying your summer. Thanks for checking in and for praying for Andrew's continued healing.
Kim
Wednesday, July 18, 2007 1:04 AM CDT Hi Everyone,
Well, I feel like I live at an ant farm. I try to be non-chalant about it in front of the kids, who are "scared" of ants, but honestly, Im getting tired of feeling creepy crawling sensations - even when ants arent even there.
You see, our neighborhood is an old ranch, recently developed. In fact, we had a minor fire (8 acres burned) last week, and the photo in the paper showed the fire, with a deer running by...deer, coyotes, mountail lions, etc. tons of rabbits, and ants. That is what we non-green folks have done, we've gone and upset the apparently major infrastructure of ants that used to live on this bit of ranch, and now we are paying for it.
Just last week, I had (no lie) 3 guys come to my door selling the services of an exterminator. That's how bad it is around these parts. Black widows, other spiders too, and ANTS!...and just a side note on the door-to-door guys....our community also gets invaded by the young adults that come by the van load, they knock on our doors in pairs and it goes something like this:
POUNDING ON DOOR, SOMETIMES AFTER 9pm....and if you dont answer it, they can get a bit angry...but if you do,
well, hello mame, it's me, (insert name), remember? Im your neighbor, Sue and Mark's son.
(then I usually call them out...but for those that dont....)
Im selling magazines to earn my way to...(name the place, or school, or charity).....
and these guys dont take no, and they are hard to get off your property (except for me, as I usually dial 911 right in front of them....and the cops site them for "illegal peddling"....really they are probably casing the joint....but anyhoo...like the ants, they are hard to leave....)
But, regarding ants....Doug and I dont feel comfortable using pesticides. Andrew is now at risk for other cancers, and since nobody knows what causes most pediatric cancers, we try to keep away from pesticides.
The big problem with that philosophy, is that we are probably the ONLY people in town that dont have a pest dude coming by on a regular basis, so, yeah, can you visualize it? all the ants in town coming marching over to MY HOUSE!
Sometimes I see a long procession, marching to and fro, and they end up going to some random bit of something as if it were a HomeTown Buffet. Honestly, this morning, I followed a truck load of them, thinking, surely someone must have dropped a junior mint on the floor...nope, it was a cucumber seed. Thousands of ants flocked the equivalent of miles to nibble on a cucumber seed.
Last year, people gave me some great tips, and as a result, I have piles of baking powder at all of the entry points to my house...it did a fine job of keeping out the ants. But they got wise, and clearly have developed a whole new underground corridor, because now they are coming from random places in the walls/floors, etc. I bet if you could see through my walls, I would look just like those ant farms, with tunnels running throughout the entire structure.
Anyhoo.....summertime, ants go with summertime, one reason to look forward to the next season. (see, we DO have a change of seasons here :))
Andrew continues with swimming, getting stronger and more proficient in his strokes. Christine is very excited to join when she turns 5, and already practices "laps"...she's not too far behind him.
Today, we went to the lab, for his blood tests. He did fine, and tomorrow we will go to the oncologist for the monthly check up. Im sure we will talk about the ENT and I need to ask about his pulmonary function. We are also overdue for his eye check up, because the radiation can cause cataracts, so we need to get his eyes checked annually.
I hope you are all enjoying your summer, ours is clipping along, so fast, but so much fun.
love,
kim
Sunday, July 15, 2007 0:02 AM CDT Well, Ive been thinking about how things seem to change in life as you grow older. Doug will be turning 40 later this year, as he keeps reminding us,,, not that he's having a mid-life crisis or anything, you know, he just keeps mentioning it. And since Ive been forty (or more) for a while now, Ive been noticing how things just arent the same as they used to be.
For example. I used to be great at remembering names. More than remembering names, I would remember people...their face, our conversations, little tidbits of information, etc. But it seems, that somewhere around turning 40, the memory chip in my brain hit capacity, and it wont allow any new information. Seriously. Not one more person. It's rather embarassing to meet someone, and then talk to them several times, and just not even know who they are. It is now a daily occurance, no lie, that I run into people, they come up and chat with me, and I dont have a CLUE! Ive become really good at going, "HI! (and I try to have one notch above of whatever excitement level they said HI) how are you?" and whatever they say, or talk about, I go along with, trying to look for clues to add to the conversation and agree with them. and I walk away from it assured that the alzheimers has already begun.
Another example. Since I had my "rockstar" photo up (and hello Lynn, how can I look at the camera with JDFORTUNE right in front of me, are you kidding??)...well, anyhoo....it hit me, when I was in the elevator, at the hotel, where the band was staying, when one of my friends and I were making small talk with the other folks in the elevator, it went something like this;
stranger: are you guys here for the INXS concert
ME; Yeah!
Stranger: are you, like, in the fan club
Me: Yeah!! (and then it hit me. *I* was not a young 20-something fan, I was now one of those 40 something women that were in fan clubs, like Barry Manilow or Neil Diamond fan clubs...like, not really cool, old ladies, that were trying to regain their youth kinda fans.) - but I had fun anyways.
And, if I could just add one more example of what happens when you turn 40...
I guess, you sort of lose your judgement. You no longer know what is popular of have good taste.
Case in point, tonight, America's Got Talent. BOY-SHAKIRA MADE IT THROUGH TO THE FINALS.
Yeah, that's life after 40, it's all gone down hill.
Enjoy the rest of your weekend,
kim
Friday, July 13, 2007 0:00 AM CDT hA! it's exactly friday the 13th, so I might as well just spit it out....our family is weird and we love the hospital, so I went to the ER last night.
In a nutshell, severe stomach pains, 7 hours of tests and tests, awesome IV pain meds, inconclusive results....and a ride back home (the kind of ride that takes place in the middle of the night, when Doug had to come and get me, and wake up the kids to pile them in the car, so that he could come and get me.)
And the funny thing...is that my kids keep bugging us to go on "vacation." We are surrounded by people going to exotic places for weeks on end, one friend is in Hawaii for 3 weeks, another in Italy for a month, and my kids want to get in on the action. It doesnt help when I say, "did you know most people in the world want to come HERE for vacation? We live in one of the best places in the world, it's like we are always on vacation!" ...but telling Andrew, "Hey, we have been going to the hospital so much, it's almost like that was our vacation this summer"...makes him smile and say, "oh yeah!" :)
Now onto good stuff.
Tuesday we went back to CHOC for part 2 of Andrew's testing. Here is a picture of his "team"
While Andrew was busy with his gals, Christine and I went to visit Jassmine's mom. I was fortunate to bring a prayer quilt from our church. It was beautiful. I also had the wonderful blessing to sit with Clara and hear how the tests for the nodules in Jassmine's lungs are just scar tissue. This is a huge praise and I really appreciate all of you who prayed. Clara and I talked about the "black cloud" that hangs over you once your child has cancer....the fear of a return follows you. But we also talked about the miraculous healings that we have been fortunate to see, and the privilege we have had of a Christian oncologist. I really loved my time with Clara.
It was also a great visit, because it seemed that every "old timer" nurse or administrator was on the floor. We saw so many of our beloved nurses.....Theresa, Renee, Jennifer, Christine M. (we missed you Christine V.), Oliva, Vu, Kathy and Kathy....even Dr. Sender was there! These people were so valuable to us and still are, it was wonderful to see them again, and especially to be able to tell them all how wonderful Andrew was doing. He was busy with his testing, so didnt get to see them, but I know they all would be amazed to see how he has grown and flourished.
It truly is a sacred place....so much death and destruction, comingled with hope and miracles. Clara and I talked about the eeriness of walking through the halls, watching the children, never knowing who will make it, but knowing many wont, and the ones that do are often a surprise.....God is more active on the 3rd floor of CHOC than I have ever seen in my life, active in life, active in death, saving earthly lives, saving eternal lives.
Thankfully, one of the moms was able to watch Christine and Elise while I went to Jassmine's room to pray for her. She is such a sweet, sweet girl. It is awesome to see her doing well. Please keep her in prayer, as she is so fragile, and things are so uncertain just after a transplant.
When I went to pick Andrew up across the campus, I met another mom with a little girl with cancer. Valerie was happy as she told me she was going to Heaven. While her mom is hopeful that the cancer that has spread might respond to treatment, she also shared her faith, "either way, Ill see her again." God is definitely alive.
Today, we skipped our cancer clinic visit, as our doctor wont be there..so she emailed me to reschedule.
We also enjoyed a very special treat at swim practice.
Olympic Swimmer, Janet Evans, lives in our community and put on a swim clinic for the team. She showed them lots of helpful tips to swim faster and stronger. She also shared her stories about swimming as a child, working towards her goals, and being a champion...which means doing your best, whether you win or lose. She is a very sweet gal and it was inspiring to hear her encourage the children. A very special part of the clinic, was that the proceeds all went to Alex's Lemonade. I am grateful to Janet and our coach, for donating the clinic fees to this important organization, and pray that it allows more future champions in the fight against cancer.
Here is Andrew and Janet with her gold medal!!
Thanks for checking in and for sharing in our lives...
love,
kim
Tuesday, July 10, 2007 0:51 AM CDT Hi Everyone,
Andrew's mouth is healing fine. And yes, the one tooth that had not previously been loose, is now more secure. The other two, that were already lose, are still lose...one sort of out of place still....again, just more ammunition to use when he begs the tooth fairy (he leaves her letters, with pictures, as well as his suggestion for what he should get!! Last time, he drew a picture of her handing him $10 - the nerve! I think he ended up with a $1 and a quarter...I digress.....)
The swim meet was fun. Andrew was in two relays, both came in 5th place. We didnt get the ribbons yet, should get them tomorrow...he prefers 5th place, that's the "golden" ribbon, so, he'll be happy.
Tomorrow he will go in for round 2 of his neuropysch testing. He also has his regular visit with the oncolgist on Thursday to check how he is doing, bloodwork (now done at a separate lab, so an extra medical outting to the schedule....)...Im sure we will also talk about his sinus issues and our referral to an ENT. Im also going to ask, because honestly, Ive forgotten the details, about his lungs. Today his coach asked if he has diminished breathing capacity. Well, yes, I guess he does. It could be from his blood counts, and just not getting the same amount of oxygen in his blood. It could be the chronic sinus issue, which just impedes good breathing. Or it could be, the damage that keeps showing up on his x-rays - damage from the chronic pneumonia he got during treatment....so, Ill need to clarify if this issue is going to heal itself and when. The coach basically wanted to know how much Andrew can be pushed, which was nice of her to ask...my philosophy has been to push him. I like for those (teacher, coaches, etc) in charge of him to understand his limitations and obstacles, so they can understand his motivations, etc. but I still want him to be pushed. When he backs down, then I respect that, but honestly, he rarely does, he always just pushes himself and does his best, and my hope is that his best will keep getting better.
I had some pictures taken of the kids... you can view them here www.capturedmomentsbytl.com and go to the client proofs. Our password is: Sprague (capital S) Let me know what you think.
And, to satisfy the curious....I have dug up a picture of myself. I dont typically have pictures taken of me, maybe because I am the photographer, or maybe because I want to lose some weight before I wind up in the scrapbooks.....but here is one....looong story, but it's me, after the finale of Rockstar INXS....at the press junket, interviewing JD Fortune, the new lead singer. Looong story, but it was memorable enough to capture in a picture.....
Also, thanks for praying for our friends. Christian's initial tests have come back good. Also, Jassmine's nodules appear to be "simply" damage. Both kids have a long way to go and are not out of the woods...please keep them in your prayers.
Love,
kim
Friday, July 6, 2007 3:20 PM CDT Hi Everyone,
I hope you all had a great 4th of July. We enjoyed our neighborhood festivities....parade, fair with games and food, band, fireworks. The kids love running around ...here are some pics of them dancing
Elise also had fun, her focus was to crawl around and see what food she could get into, who's plate she could grab. She is starting to stand without holding on for a couple seconds at time, periodically throughout the day, she may be walking soon!
Christine was asking me about why we celebrate the 4th of July. I told her it is the day we thank God for being able to have freedom, freedom to love Jesus....I told her some countries cant worship God, but we are lucky that our country is free.
Later, Doug said, "Christine told me the 4th of July is for celebrating Jesus." and he kind of laughed.
We then got into a discussion about what the 4th of July really celebrates. And the kids got in on it, playing their "school house rock" tapes. Doug votes for the ole historical, taxation without representation issues that led us to start our own government. I still believe that we were created as a nation to worship freely, and that our foundations were set upon God's Word, and that our liberties are what we celebrate.
No matter what your take...as there is so much for us to be thankful for, I hope you enjoyed your 4th.
Our neighborhood fireworks show was dedicated to Heroes, and we thought of Uncle John (my bil) who is preparing to go on his 2nd tour in Iraq (after just coming home from his second tour in Korea.) We are praying for John and all the soldiers to be victorious in establishing democracy and freedom in Iraq, and that they come home soon and safe. I think the middle east is a perfect example of why we are so fortunate to live in the USA, and why we are thankful for this blessed nation.
And as much as the 4th was about being patriotic, yesterday was about visiting doctors and hospitals.
Andrew woke up with an infected eye (again) and it was a reminder that his sinus infection is still in force. He never complains of headaches, Im not sure if I should be glad that he is brave, or sad that he is so used to pain that he isnt even aware of it until it's uncontrollable.
The last time we went to the pediatrician, she wanted the oncologist to do more xrays and give him more antibiotics. The onc felt like we had already done a bunch of antibiotics, and we should just see how things go...since his chronic sinus issues are from treatment, they wanted to see if they would improve over time. Well, time is here and so is the infection.
I called our onc and she ordered him two antibiotics, and a consult with an Ear Nose and Throat doctor. I dread one more doctor, and I dread the thought of sinus surgery, which unfortunately is what many of the cancer kids need to correct the damage the chemo has done to their sinuses. Please pray that Andrew's sinus issues are healed and he wont need to have any surgery.
After swim practice, we headed up to CHOC for the first part of Andrew's neurocognitive testing. It is done over the course of 2-3 days. They not only meausure his developmental progress and intelligence, they are also able to thoroughly assess the neurological functioning, to see if there are any areas of the brain that are weakened due to his treatment. The purpose of the testing each year, is to catch any trouble areas early. Since the damage from treatment is degenerative, it happens over time, and often doesnt begin to make a noticeable impact until 5 years off treatment. If we can catch any areas early, we can provide intervention to help lessen the effects.
While Andrew did his testing, The girls and I visited with Clara, whose daughter Jasmine recently had a bone marrow transplant. We couldnt visit with Jassmine, because she is still on isolation, but it was good to see Clara. Please keep Jassmine in your prayers. They have found a lot of new nodules in her lungs, and are unsure if it is damage, cancer, or a fungal infection. An infection, and of course cancer, would both be devastating to her fragile system, please pray that they find out what is in her lungs and that she is healed soon.
We are also praying for our friend Christian Barker , he is also recovering from a bone marrow transplant and is awaiting results of a recent test...a test to check and see if the cancer is gone. Please pray that God has healed him off this terrible disease.
After returning home, the kids were in the shower, and it was as if, as if we just didnt get enough of the hospital for the day. Calling the doctor re: the sinus issues wasnt enough, going to the hospital for testing, visiting a friend in the hospital, no, not quite enough, we needed some real, down home hospital time. So, Andrew went and fell in the shower, smacking his face into the ledge by the door, yep, that ought to do it! We hurried off to the ER to satisfy our quest for more hospital time.....
Poor guy, his mouth was loaded with blood and he was in a lot of pain. When all was said and done...split lip, but it was healing well on it's own and didnt need stitches. Upper lip and gums were pretty badly torn up, several little pieces of his gums were missing, two front teeth are more loose than they already were, and the upper gums are black. Luckily, he is on his antibiotics for his sinuses, so that should cover us on infections....if the teeth are damaged or fall out, no harm, they are baby teeth, and on their way out anyways. Everything else should heal nicely, and the best news of all...he can swim in the swim meet today.
We came home, and Andrew was still hurting...so we gave him some pain meds and he went off to bed. We teased him about creating this big episode just to get more money from the tooth fairy.....
Thankfully his mouth is looking better today. It is still very swollen in a few places, making him talk funny, but he is eating fine and not complaining of pain.
We are getting ready to go to our swim meet, this one is held at our own pool, the other team will come here.....Ill get some pictures...
Thanks for checking in and for praying for Andrew,
love,
kim
Sunday, July 1, 2007 11:19 PM CDT Wow, a busy weekend to cap off a busy week.
The kids had so much fun at Vacation Bible School. The theme was Mission Possible: all things are possible with God. Christine was part of the "busy bug detectors" and Andrew was a "super secret agent" -or something like that. They were part of the C.I.A. - Christ in Action Lots of "spy" gadgets and stuff incorporated in....and they learned about the full armour of God.
What was really impressive (besides how much fun my kids had, and how much they truly learned about God's armour) was the our church wrote the whole curriculum, including the songs. The kids went home with a CD with all the music, written by our worship pastor, Holland Davis, and it is really top notch!
Friday night was Andrew 1st real swim meet. It was held at another team's pool, and Aunt Joanne was able to come and watch him swim...he was so excited to have "relatives" (as he calls them) cheer him on.
He swam the 25 yard free style (and came in 6th place, for which he will get a participant ribbon) and he did the 4x25 free relay, for which they came in 1st place! I was so happy for him, he really felt accomplished and cant wait for this Friday's meet. We dont have pics, but we do have video, Im thinking it might be easier to just put it up on youtube and link to it, although, I dont know how to put video on youtube, so, just a thought.
Saturday we had a surprise visit from our dear friends who moved to Texas last year. We spent the day yesterday, and then today they came back and we went to the big water park. The kids really enjoyed each other's company.
last night, Doug had his first surf lesson. It was a great time, he got up on a few waves. Afterwards, the instructor was kind enough to take the kids out for a quick lesson. Christine was so eager and not the least bit afraid...she was really proud of her self, and afterwards said, "Dad, can we talk private?" and when I asked her what she needed to talk private about, she said, "surfing" LOL.
Here are some cute pics of vbs and surfing.....
the kids dancing with their secret agent dance moves
Elise is hanging out in the ball pit, she really just liked trying to lick everything.
kids having fun at the beach
Christine paddling out
Christine was so comfortable standing on the board.
Thanks for keeping Andrew in your prayers. I am so amazed at how well he weaned down on his pain meds. He still takes 200mg of the neurontin, and Im hoping that with the increased swimming he will be able to come off it completely.
love,
kim
Thursday, June 28, 2007 9:38 AM CDT HI Everyone,
I cant believe it has been a week since my last update....sorry for the delay.
The rashes.....Elise continued to have dots pop out all over, but they never did itch or blister. I havent ruled out 'sand fleas' from our visit to the beach...but thankfully the little buggers are fading now.
Where ever we go, people would look at Elise and smile...and I was always just waiting for them to notice her bumps, so I would always break the ice and say, "she has a bunch of bites from the beach!" (didnt want them to think she had the chicken pox)...1/2 the time the people hadnt even noticed.
Andrew's rash is fine too...he continues to swim daily, so I dont think it was the pool...I think he had a viral thing...who knows.
We had a busy weekend. We were very sad to miss our Survivors Day, where all the CHOC cancer kids gather for some fun. I didnt want to take the kids when I wasnt sure what the rashes were...as some kids that go to the party are still in the midst of treatment, and it's risky for them to be in public. They are counting on others not to show if they are sick, so I wanted to be extra careful. We missed our friends... Baby Sammy we must get together soon!
On Friday, Andrew's swim team did relays, as a practice run for upcoming meets. The stood on the blocks, waited for the signal and dove in. He really had a fun time. He continues to swim every morning, and his first real meet against another swim team is this Friday. I am sad that I work Friday nights, I will be there at the beginning and need to leave 20 minutes into the meet....Im praying he is in the first race!!
Andrew also enjoyed a friend's birthday party this weekend, he loves being around his school friends.
Our church has had Vacation Bible School all week; Mission Possible. I bring both kids in the morning and I stay and wait...and then Andrew and I leave at 10am to go to his swim team. Then we rush back to pick up Christine at noon. I didnt take him out of swimming, because it has been so good for him and I believe a main reason that he has been able to wean off his pain meds. Christine is really having fun learning about the full armour of God.
This past weekend, our church had a silent auction to raise money for a missions trip to Costa Rica. There were surf lessons for 2, so I put in a very low bid, expecting to be outdone....but guess what? we won (for a very low price!)....I guess everyone else already knows how to surf! Doug has always wanted to learn, so he is going to do both lessons...his first one is Saturday, Ill keep you posted!
I still need to pick up the camp pictures! So much running around this week.
love,
kim
PS. Our local law enforcement has been promoting the "click it or ticket" campaign...and our family has been yelling, "click it or ticket!" as soon as we get in the car, reminding each other to wear our seat belts. Somehow, I dont know how, I managed to not have my seat belt on yesterday and yes, you guessed it, we were pulled over and I got a ticket. The kids were so excited!! Me, not so much!
Wednesday, June 20, 2007 11:21 AM CDT Hi Everyone,
Thanks for all of the kind messages in the guestbook and emails. Who knew that rashes would bring out the lurkers? I love when I see new names in the guestbook, especially when they mention that they have been praying for Andrew for sometime - what a blessing to hear from you!!
Yesterday at our 2nd visit, the doctor noted Elise's rash. It is worst on her shins, but she has them on her arms, and some on her tummy. The doctor said they COULD be chickenpox, but it would take a day for them to develop before we really knew. (insert cross-eyed emoticon here!)
I asked (and re-asked) if there was any possibility that Andrew had chicken pox, or any viral rash, and she said, "no". She said he was free to swim ....so right from the doctors we went to swim team practice where he made another attempt at breast stroke (another story).
Anyhoo....back at the doctors. We discussed the what if's if Elise does have chicken pox. Even though Andrew is out of the "life threatening" stage re: chicken pox contact, I guess it's still serious, as he would still have to have IV antivirals if he comes in contact with it. But right now, we dont know what she has. She said to monitor her, and that by tomorrow it should be clear.
Well, today is tomorrow...and she must have at least 20 bumps on each shin! BUT thankfully, they dont appear to be chicken pox. and they also dont seem to itch.
As someone mentioned, they do look like bug bites....but the only place I can think of where she could have been bitten, was at the beach. Usually she stays in her car seat, which is up on the stroller, but at the beach, we put her car seat down on the ground...so, if there were sand fleas, her shins would get it the most. I didnt let her roam free crawling around in the sand....held her when she wasnt in her car seat. So, who knows, perhaps she got massively attacked by fleas at the beach?????
In any case....Im trying to just pray that this is the end of this rash fiasco, and that everything is going to heal and fade away....
Andrew will continue to be slathered in Cetaphil cream often, especially after swimming each day....Ill keep you posted on that.
Today is Waterpark Wednesday, where we hope to meet up with Andrew's classmates at the big water park. The kids are excited!
Thanks for checking back and for keeping us in your prayers.
Oh, Andrew said the funniest thing this morning. At the doctor visits, he was very interested in a large poster of childhood rashes (complete with pictures)...he studied it and asked lots of questions.
Today, he asked how Elise's rash was looking, and I told him I didnt think it was chicken pox...he said,
oh, so she probably just has roseola infantum, huh?
LOL....we had explained to him yesterday that ROSEOLA INFANTUM is a rash that lots of babies get, and it's not dangerous. so funny that he remembered that!
love,
kim
Tuesday, June 19, 2007 2:55 PM CDT Hi Everyone,
For the record, I want you all to know that today was the day that I was going to try to tackle some of the sci-fi-blob-monster we fondly refer to as "laundry." Honest, I had every intention of sorting through some of it at least. However, it seems the predestined plans for my day were to be devoted to doctors and rashes.
We went to Andrew's pediatrician today. I adore her, she is wonderful, and she is an pediatric infectious disease specialist....even teaching the subject at University of California Irvine. So, what did the medical expert say about Andrew's rash? Dry skin.
Now, as much as I love, trust and respect her, Im really having a hard time buying the "dry skin" deal. But, at least it's not something to worry about...we were going to go home and continue with lotions and such. Fine.
Just so you know, with the exception of sympathy for the itching, I dont really care that my kids get a rash. I dont really even care about chicken pox now that Andrew is out of the chicken-pox-is-life-threatening stage. Chicken pox, schmicken pox, they get a rash and itch, miserable for a bit and then it's over. Personally, I even prefer kids getting the pox to a vaccine...just get it over with....no need to worry about getting it again (which seems to happen with kids who are vaccinated) or growing out of the vaccine (which seems to happen by the teen years.)
But when Andrew got the 2nd round of his rash, I felt I needed to make sure it wasnt contagious, or dangerous.
Dry skin, ok....safe enough.
So, I get the kids back in the car, collapse the stroller, heave it into the back of the van, drive home......reverse order to get back into the house.....and I go to change Elise's diaper, and find her shins are breaking out before my eyes in postules. I immediately call the nurse, and by the time we finish our conversation, Elise has about 10 on each shin. In the 15 minutes waiting for the doctor to call me back, her torso is now covered in the front, and throughout our 3 minute conversation, they begin popping up on her back. So, in about 15 minutes, I will be packing the car back up and heading over to the doctors, AGAIN!
As I said, I dont care if they get chicken pox, or some other rash, but I at least want to know what it is so I can make sure Im not spreading something around town, or that it wont develop into something more sinister.
I have taken pictures, and unfortunately, it is hard to see the rashes. Andrew's is a fine, raised rash covering his torso. Elises are more like pimples....bigger and not as many as Andrew, not as close together as his rash.
Im not sure why I am posting these, especially since the poor photo quality wont give an accurate viewing.....I guess I am posting so that people know, Im not making this up...it's not like we miss our cancer-hospital-life so desperately that I need to come up with a new ailment. Also, Im not so nuts that I take my kids to the doctor (2 or 3 times especially) for dry skin.
So, here they are.....once I saw online that there is a website where you can guess what the medical condition is.....let's have the same contest here.....if you know what it might be, feel free to let me know...... Ill update later.....
kim
Andrew's skin is covered in tiny pin size bumps. I realize they may be hard to see in these pictures, and even in person, they are so fine that you can only see them if you look closely...but you can definitely feel them, as they are raised up.
You cant see hers well either, but they are not as fine, and about 5-6 are together on her leg, below her knee.
Tuesday, June 19, 2007 2:50 AM CDT Hi Everyone,
We had a great weekend with Grandpa. It was so nice having him here, the kids crawled all over him vying for his attention. I could tell Andrew was excited because he was always acting silly, and took a fancy to calling him, "Herb" instead of Grandpa....which we tried to nip in the bud.
Tonight, on Grandpa's last night, I had to take Andrew to the urgent care. (HUGH SIGH) Last Thursday morning, Andrew woke up telling me his neck and back itched...I couldnt see anything, so I told him he would be fine. later that day at school, they called, and gave him benadryl...he slept, but the rash remained.
He had just had his blood work, so I called the oncologist, and there was nothing indicating an infection (in fact his white count had dropped, and it would be high if there was an infection)...his breathing was fine, no fever, etc.....
I figured it was the new "quick dry spray" sun block....threw the bottle out, and thought we were done.
He has continued to itch...benadryl didnt do a thing, but cortisone cream helped. We didnt put any more "products" on him, ie. soap, shampoo, lotions.....and hoped it would go away. In fact, it started to crust over.
Tonight, however, a whole new batch cropped up.
I checked with the oncologist again...knowing full well we would have to be seen by a regular pediatrician...and double checked what blood work and tests to ask for (regular pediatricians are generally in the dark about Andrew and his immune compromised condition.) I even called the urgent care to see who was working, because honestly, its not even worth going sometimes. But a pediatrician that I know to be good was on, so we went...wasting valuable grandpa time......
I should have bet my house on this one.....long story short....she thought it was a heat rash (it's not!) and then said, "you should go to your own pediatrician tomorrow, she would know better than I what this is."
Now, I dont know if it's my frustration with doctors/hospitals.....or what....but I dont think I should have to pay a $25 co-pay when they basically DONT KNOW and tell me to come back to see someone else. Also, its not just the money, because once you owe a ton of money, what's $25 more dollars......it's the time, the sitting around the waiting room, the loading everyone in and out of cars and wasting time...the exposure to who-only-knows-what...etc. etc......I really think I should get my money back (and maybe with a bonus wasted-my-time-fee, when I go and they dont know what to do.)
so, Andrew's got his rash, we go back tomorrow (long sigh) and hopefully will get to the bottom of this.
As for our weekend....since Andrew didnt have a fever we were told to enjoy ourselves, and we did....
Waterpark madness, tide pools, s'mores by the fire ring and grandpa even got to come to Andrew's swim practice...although today was unique and they did very little swimming and lots of instruction was given on how to do the breaststroke (which hasnt clicked for Andrew yet.)
We were sad to see him go....but hope he will hurry back.
One proud thing to mention....Christine is now very good at tying shoe laces into bows! She has such nice fine motor skills and it is great to see her excel at things on her own, independent of her brother (who is now dependent on her to get his shoes tied!)
have a great week...and Ill update soon on this rash and post new pictures.
love,
kim
Thursday, June 14, 2007 11:18 PM CDT Hi Everyone,
I feel like we are pressing against the doors of summer...Christine had her last day of school yesterday, and Andrew's is tomorrow. Soon we will be overwhelmed with lazy days, water park fun, and swim team every morning - with some swim meets too!
Yesterday's visit went well. The doctor looked at Andrew's sinuses and said they still look (I dont remember what word he said...but they are still causing problems)...he said that we would switch to 1 week of Afrin, and saline drops twice a day....and see how that changes things...no antibiotics.
He gave the green light to go swimming again..........
As of June 1st, we now have awesome insurance again (it's not cheap, but it feels good to know we have a net beneath us again, and we can begin to chip away at the 1/4 million dollars of medical bills that are literally piled up in boxes.) The only hitch with this new insurance, is it doesnt cover lab work at the clinic, we have to go to a separate lab to have his blood drawn. Not a huge deal, but it means 2 days of doctors, instead of one....as we will go to the lab a day or two before we go to the clinic, so that the oncologist will be able to see the results when we are there. Also, it means instead of sweet, cute, child friendly nurses that Andrew trusts doing his blood draws, we have random phlebotomists from a lab....nothing against phlebotomists, but they arent the same, and, there is no child life specialist to give out toys for bravery, etc.
So, yesterday we didnt get the labs, we did it today. Andrew was stoic, watching calmly as he gave the "1-2-3" ....We got the results back this evening. I was sort of uneasy that his white blood count (which had gone into the normal range within a couple of months off treatment) has gone down a bit and is below normal again. It will probably take a year or so for his counts to stabilize and be normal...and his other counts look fine, so nothing to worry about, I just done like to see them dip low like that.
Anyhoo...back to swim practice today, and he did great.
The kids are getting excited as their grandpa is coming to visit this weekend. We have a great Father's Day planned.
Here are some fun pictures..........
Christine with her teacher, aide, and BFFL on their last day of school.
Andrew practicing his back kick a week or so ago at practice.
Here are a couple from the lemonade stand in May.........
Here is Andrew with our neighbor Sam , who is currently fighting leukemia.
I had a little poster up at the stand, it had the pictures of 7 of the 9 kids in our community that are cancer survivors...some still fighting. It was really great to have some of them drop by the stand...it was also nice for people who came to buy lemonade to connect the disease with our community...some recognized classmates and neighbors that they didnt realize were undergoing chemo for cancer.
Andrew really looks forward to the stands each year, and invites his friends. He had fun passing out the lemonade.
Just a tidbit....each year I have a bowl of lemons, I also bring my cutting board and cut up some lemons, I think it adds a nice touch. This year, for the first time, SEVERAL people realized (probably from the COUNTRY TIME POWDER CANISTER) that the lemonade was not "fresh squeezed" and wanted their money back....and it wasnt when they tasted it, it was as I was pouring, and they were looking around.....anyhoo...it was a great time, and so many of our friends, neighbors and local merchants helped out in huge ways....we are so lucky!
hugs,
kim
Wednesday, June 13, 2007 3:29 PM CDT So much to be thankful for....but for now...........
Andrew in June 2004
and here he is graduating from kindergarten, exactly 3 years later.
We are so thankful for all that God has done in Andrew's life.
Today we go to the clinic where he will have his monthly blood test, please pray for continued remission. I will also bring up his chronic sinus issue, have them check the stitches on his chin (they are "dissolvable" but seem to be the same as they were on Sat.), and also mention that we have weaned him off tramadol completely (yeah!) and he is down to 100mg 2xday of neurontin. We tried to go to once a day, and he was complaining of leg pain at night.
love,
kim
Sunday, June 10, 2007 1:16 AM CDT Well, never a dull moment around here.....
Andrew just returned from a trip to the ER (the world's FASTEST trip)....to get 3 stitches in his chin.
He came home and told me (and Doug confirmed), "4 shots to numb it, 3 needle pokes to sew it, and 1 bandaid"
I would say, if you were going to get hurt, there couldnt have been a better way....
He attended the birthday party of his classmate, and on the way home, Doug said it was, "the best birthday party I have ever been to." and Andrew said, "That was the best house I have ever been to."
I agree with Andrew, the most amazing house (with I could go on and on about, but it would only fuel my envy)....it had a really cool pool with a rock water slide. Andrew was having a blast, and when he went down face first, he hurt his chin. He was swimming with a pained look on his face, holding his chin, and he told me he hit it, but when I looked at it, I didnt see any blood. About 10 minutes later, when he got out to use the restroom, I noticed that it was bleeding, I looked at it, and sure enough he had a little gash...little, but deep.
Well, of course there were tears and he was upset to leave the world's best party at the world's best house....not to mention really nice friends....but when he finally calmed down and we were driving away, he said, "It's not good that I hurt my chin, but at least now I know not to do that again."
So, the stitches will keep him out of the water at least for Monday and Tuesday. Tuesday is GRADUATION.....cant wait for that!!
I havent picked up the camp pictures yet, but here is a new pic from the class field trip to the tide pools a few weeks ago. They are the "KA Alligators" and here he is with a classmate, with a sand alligator that they all made.
Enjoy the weekend,
kim
Thursday, June 7, 2007 11:04 PM CDT Has today been crazy or what?
First, I wake up to find out that Paris Hilton was let out to of jail because of a *medical problem*, which seemed strange to me, because having worked in detention facilities, I know they have medical units with a doctor and nurses, and in worse case scenarios, you can even go to a hospital with a sheriff.....then I heard that really it was an "impending nervous breakdown"...are you kidding me? Let the girl have her nervous breakdown, lots of people in jail are cracked up, and understandably so, let her lose her mind a bit (as if she hasnt already).....I mean, has she considered that her "hot" nights of partying, DUIs and car crashes might might result in her causing someone else to have a nervous breakdown? or get hurt? or die?
Anyhoo.....just couldnt believe it!
That was followed by going to the grocery store, only to find they rearranged the aisles (why???), and then when I got home and finally sat down long enough to watch some TV, Doug said the "only thing on" was PIRATE MASTER! Have you seen this? It's basically Survivor, but there is a boat and most of the people have long hair, like pirates. A survivor pirate show, I told you the world has gone crazy today!!
At least things are going well here.
First of all, back to camp......besides Christine's jaunt to the Emergency Room for her "nurse maids elbow" everyone had a blast. Elise was passed around like a hot potato, all the while keeping calm and cool, sucking her "two fingers" Here she is relaxing....
Andrew was SUCH A BIG KID at pool time. Everyone had to stay in the shallow end, except him....cruising the deep end. I felt proud of him, for once he could shine.
And speaking of shining, and ok, I know people hate this kind of bragging BUT....he got his testing scores back from school (stanford testing that is done statewide)...and got 100 n most sections. I was blown away! It is such a miracle from God, truly. One minor concern, is that while scoring nearly perfectly on all academic areas, the "listening" portion was 51 this may be an early sign of attention issues, which I will share with the psychologist who is doing his upcoming neuropsych eval....but for now, we are only grateful for what God has done, praying that His healing continues.
While at camp, the moms often gather to make crafts and such while the kids run around from activity to activity with their counselors. A couple of times the subject of cognitive delays came up, and people asked how Andrew was faring. I would (being sensitive as many of their children have suffered dearly) say that we havent seen any issues yet...and they would always respond with, "just wait, you will, they take about 5 years to really emerge."
I know that the damage is degenerative, and truly it does take time to show up, but I also want to hold on to the amazing miracles that God has done in Andrew. I dont want to believe that my bright boy might ever struggle. The delays arent necessarily a matter of being less-smart....they are typically severe attention and global functioning issues, where the child cant organize their thoughts, which then makes reading, math, etc. nearly impossible. But I am still holding on to how well he has done thus far, and his recent test scores were like a note from God, reminding me that He is in control.
It was interesting at camp, spending time with families who have gone through similar trials. Some of the kids are still on treatment, some are done - with a spectrum of lasting side effects...some severe, some mild. And there are families that attend, whose children have gone to Heaven....for many, they feel comforted to be with people who understand what they have gone through, and their other children enjoy a camp where cancer isnt a secret or taboo...it's a normal part of what they live, and people understand the pain.
Doug and I were reflecting on just how lucky we have been. At camp we are reminded of how much God answered our prayers, how much He has done in Andrew's life. I brought up the time when Dr. Torno told us that the chemo wasnt working for Andrew....she told us he wouldnt make it. Now that I have done research and been around the cancer block, I am even more aware of how miraculous Andrew's healing has been....that really was a bleak day! Doug shared a time that I had completely blocked out of my mind, when the social worker and chaplain came to prepare us for losing Andrew. Those early days were so painful, I do remember being overwhelmed by the situation, I never realized just how much.
This week, I have been helping get ready for Andrew's graduation from Kindergarten. He will wear a little cap and gown.....honestly just the thought of it is overwhelming for me emotionally, because for so long I didnt think he would make it to Kindergarten. I really never thought that this day would arrive, where he would finish Kindergarten, and in such wonderful condition.
I can only thank God and to tell everyone I know that God has heard our prayers. We know so many other children that didnt get to graduate from Kindergarten, or finish their schooling, or like Alonzo, he got his diploma at home, just days before going to Heaven. God loves Alonzo, and John, and Gregory, and Amy, and Cam and the many others that didnt win their fight. He doesnt love Andrew more, we didnt pray more.....He just, for some reason, heard our prayers and chose to have mercy on us. I am so thankful.
Here is a picture from camp....Andrew with our friend Shane. The boys both have the same primary care doctor...she has been wonderful, always approving what our oncologists order...which isnt always the case with an HMO. She has been a blessing! Shane still suffers tremendously from the leukemia he had a decade ago.....please keep him in your prayers.
Also, please pray for our friends who are going through transplants now. Jassmine is at choc, having her transplant any time now, after relapsing with leukemia. She doesnt have a website but would love your prayers.
Christian , who has travelled to Washington and is having his 2nd bone marrow transplant this weekend. Those of you with a "cancer background" know that the odds of making it through a 2nd transplant are awfully slim, so slim that many dont bother attempting it....but Christian and his family are fighting hard, trusting God and would appreciate knowing that you are praying for him too. Please drop them a line, let them know that Andrew sent you, and that you are asking for God's merciful healing upon Christian, just as He has done for Andrew.
The pictures from camp are dropped off at Costco, I promise to post them soon.
Thanks for your continued support,
love,
kim
Tuesday, June 5, 2007 1:50 AM CDT cancer camp, oh cancer camp, where to begin with the stories from cancer camp.....
truthfully, I probably wont be able to write it all down now, at this late hour, but I also dont want to leave anyone hanging, or make anyone think that we fell off the mountain.....so, Ill write a bit....
It started, as it does, with us meeting at the hospital, and the kids getting on fancy busses with their counselors and cabin mates.
Andrew is in cabin 5, this year named the "Incredible Pirate Hulks"
**note** each cabin (they are broken down by sex and age, I believe there are 8 total) each cabin has a name, it changes each camp, depending on the theme. This was the 25th anniversary of the OCF-OCF camps (orange county foundation of oncology children and families....or something like that)...anyhoo....25th anniversary.....1982.....so, the themes were 80's type....the rockin' rubics cubes, the smurfettes, the breakdancers.....and cabin 5 was the Incredible Pirate Hulks (yes, hulk the green guy, but with pirate gear...dont ask, but the little boys loved it!)
Christine was in cabin 6 (the youngest in her cabin again) and was a "rainbow bright girl"
Before each meal, and around the camp fire at night, the cabins come up with "diddys" (made up songs) and often dress up....so, pirate hulks; a green t-shirt with muscles drawn on it, like the hulk, with an eye patch, bandana, and sword. each diddy is a different costume, different song....very fun!
The counselors put a lot of time, preparation, creativity (and money) into these costumes and attire. Also, at each meal, the kids counselors have decorated their tables with paper products (dont ask me how they found hulk paper products, or rainbow bright....) and the kids also get a fun treat bag at each meal.....fun!!
Where was I?? Oh yeah, the kids got on the bus with their counselors and cabin mates, and we parents followed behind in our cars.
The first night was a bunch of fun, the kids were rekindling friendships, and for Christine that meant re-swooning over counselor Kyle (who happens to live in our neighborhood, only a few doors down, if you can believe THAT!) He is so nice to her, and like everyone, carries her around (her feet never hit the floor at camp!) Unfortunately, at one point, when Kyle was swinging or lifting her, her "nurse maid's elbow" happened....it's like the elbow pops out of place, it hurts a bunch, and she gets this from time to time.
Last time, the ER doc showed Doug how to put it back, but he forgot, so Doug took her to the ER. Poor thing, she was crying in pain, and crying even more that she would have to miss campfire! Luckily the trip to pop it back into place was less than 2 hours, and she was able to join in the festivities before bed.
Speaking of bed....Im gonna hit the hay, me and my chapped lips.....but there is so much to tell about camp, that I will make a point to update soon, and yes, I have some cute pics :)
hugs,
kim
Thursday, May 31, 2007 0:49 AM CDT Hi Everyone,
Lisa, swimming is going fantastic!
Honestly, this past week, Andrew was saying he wanted to quit. "It's too hard" he kept saying, "I dont like being the slowest."
Ive explained over and over; "Think of all your friends that can not swim AT ALL! Or who could never swim a lap! You are a fantastic swimmer!" and reminded him that the chemo took away most of his muscles and bones, so it will take time for them to grow again......
but his little spirit has been bruised a bit....I imagine to try your hardest, and still not keep up, would get tiring, Im impressed by his diligence, and saddened that it has to be so hard for him.
So, on Tuesday, when he told me he was going to quit.....they practiced with fins!!
I had asked the coach in the past if he could wear fins, if it might help give him a boost, and was told they would be too heavy for him. But now, everyone (summer practice season) is using them, and the coach said it would help him.
I havent been able to find his size yet, as (like the rest of him) his feet are the size of a 3-4 year old...so, he didnt have fins. He plugged along on his own while the other kids used fins (talk about being left in the wake!)
Then, something marvelous happened. Something I know that God planned down to the details.....
The other kids finished with fins, and the coach told Andrew to borrow a pair to try them out. So, while everyone else swam without fins, Andrew used fins, and as he will proudly tell you, "I beat the whole pool!"
He was quite impressed with how fast he went, and it truly boosted his ego and now he is all on board with swimming again, excited to win some ribbons at a swim meet.
AND, now that summer team is in gear....there are some new kids, and he honestly is not the slowest anymore. He is making such progress!! The team is swimming 600-800 yards each practice (that is 16-20 lengths)...can you believe it??
Yeah for him, thanks to everyone that has been praying...and I also think it has been great at dealing with his nerve pain. We have weaned him down considerably and he is not complaining about pain. I am hoping to have him off his pain meds altogether in the next month, please continue to pray for this area. thanks.
He is still having sinus issues. He is on a new antibiotic....really, he just has chronic sinus problems as a result of the chemo, it has thickened the mucousal lining in his sinus cavity. I will bring this up with the doctor again in a couple weeks when we see the oncologist. His Primary doctor is concerned and wants x-rays. The last MRI already showed that it is a big problem...really no reason for that head to have more radiation...we just need to be more aggressive and try to get rid of the problem one way or another.
The big hoopla of the day, is Andrew's loose tooth. If he doesnt pull it out early, it will probably come out at CANCER CAMP (the kids are almost frenetic about camp now)...I told him that the tooth fairy probably doesnt come to camp (because the little boys cabin is a disaster,and I cant imagine sneaking in and leaving him anything....without it getting lost or one of the 20 kids catching me!) Andrew, on the other hand, thinks it would be a great idea for the tooth fairy to come to camp, "she probably hasnt been able to come to cancer camp before, so it would be fun for her!"
Only 2 more weeks of school. hard to believe my kids are growing up so quickly!
love,
kim
PS. we made it to the giant waterpark on Monday....the kids had a blast!
Monday, May 28, 2007 1:28 AM CDT Hi Everyone,
Sorry for the delay between updates. I always want to wait until I have the time to write a complete update, and lately, that time has just not come.
Last weekend, we held our Alex's Lemonade Stand at the local Taste of Ladera. It's an amazing event, mostly because it is put on by volunteers in our community, is very well organized, and is all for charity. There were about 60 some booths....all kinds of restaurants (it is the TASTE of Ladera, after all), some neighborhood businesses, and some charity booths. All the money raised goes to charity..as the money raised by the non-charity booths is given to selected charities. And then of course, us charity booths get to keep our own money raised.
I really like doing this event, I enjoy getting to interact with all the people, listen to the music (we had an amazing band that looked and sounded exactly like U2, Hollywood U2 is their name, they were incredible!) and of course, the food is so good!
Doug and the kids were there for most of the time, except for a midday break to take a nap. Andrew really enjoyed serving up the lemonade to people, Christine did too. I think we sold 40 gallons this year!! That is pretty amazing. Last year we sold about as much, but last year we were one of the only beverages available on a very hot day. This year, people could have selected from a variety of alcoholic drinks, as well as slushies, snow cones, free water, sodas, etc. So, to think we kept up our sales, even with all the competition (and it's all for charity, so the fact that ours was a charity booth didnt make us stand out.)..well, we feel quite humbled by the support from our community.
So much is going on around here, activity wise.....Andrew continues to plug along with swimming. I wish I had a video of him trying to do the Butterfly stroke...he is so cute. The summer swim season is starting soon, and he will have practice every morning. He is looking forward to the "races" as the team competes in several meets over the summer.
Yesterday Doug took the kids to "fossil park" and they indeed found a "fossil" Im not sure what qualifies something as a fossil, but it made the kids happy, which makes me happy.
Tomorrow we are going to venture over to our big water park. Im praying that the crowds are low, it's opening weekend and Im fearing a frenzy of people fighting over chairs.
Tuesday Andrew's class is going to the Tide Pools for the day. He is very excited.
Friday, we go to CANCER CAMP! The kids are talking about it non-stop. They really get spoiled with fun activities, junk food, and lots of attention.
Lately, we have just been enjoying each and every activity. There was a time, when I wanted time to hurry. When Andrew was diagnosed, he was only 2, and I knew he wouldnt finish treatment until he was 6. I didnt know if he would make it to 6, I tried to enjoy 3, 4, and 5....but he was so sick, and I kept telling myself that life would get better, the nightmare for him would be over once he got to 6.
It's weird to think that those years are gone and that we didnt get to enjoy them the way we should have. During each phase of treatment I just wanted to hurry and get on to the next. It was hard to savor times that were painful and hard to appreciate them when it felt like his life was in jeapordy. I guess it's like having to walk over hot coals. You run, you try to block it out of your mind, you just want to get to the other side.
Here we are now. Sometimes I feel as if those years were wasted...we were cheated from experiencing normal things during those stages of development. But I am thankful that we are at 6, and sometimes I appreciate that Andrew has grown and developed into someone way beyond his years. But now, we want to cherish every moment, I want time to go slowly, so that I dont miss one bit of how wonderful he is doing.
Over the weekend, we went to an outdoor shopping center. We like to go and walk around. They were having a promotional event, which included a guy making popcorn on stage (they were going to show a movie)....they called Andrew up to help make the popcorn, and he got to talk in the microphone and stuff. He felt like a movie star, and the guy commented on how well spoken and outgoing he is.....he wondered if he was in tv or movies. I had to laugh to myself, because while Andrew was isolated from his peers for so long, he was hanging around with adults in a medical environment...developing an ability to socialize with adults and act mature beyond his years. He still acts a bit immature when around kids his own age (normal for cancer kids who missed out on some typical socialization)...but he developed other areas of strength. Cancer life is weird like that.
Well, the week will be busy but I have some cute pics from the Taste of Ladera that I want to put up, so I will post again soon.
All the kids are doing well. Andrew is weaning off his pain meds quite nicely. People must really be praying about this, which I appreciate, because he has not had any complaints of pain. I think the swimming is helping too.
Here is a gross tidbit to leave you with....but it's Andrew being a boy, a 6 year old boy.....
In our house, when we pass gas (or shall I say when *they* pass gas) it is called a "tooter"
Andrew, being a 6 year old boy has come up with a new phrase....he told Doug the other day, "I just served an omelette!" it took Doug a minute to figure it out....but now the two of them are having fun with their new potty talk term! Im loving every moment of him being 6!!
love,
kim
Sunday, May 27, 2007 10:43 PM CDT OMG< I didnt mean to wait to long and I certainly dont want anyone to be worried....
I have been waiting to find the time to tell you all about our big lemonade stand, and post pictures...and update you on the fun happenings around here...but there never seems to be the time.
So, for now, I just want to say we are doing fine :) I will update again with new pics and ramble on about how great the kids are doing.
hugs,
kim
Thursday, May 17, 2007 1:55 PM CDT Hi Everyone,
Yesterday we went to the clinic. Andrew had his check-up and blood work. His labs came back fine, showing that his counts are increasing and he is in remission - thanks for your prayers!!
His sinus infection is quite stubborn, and they have added more days to his antibiotics. Andrew doesnt complain about his sinus issues, we only know he is infected when the infection spreads to his eyes, and he ends up looking like he has pink eye. The doctor also noted that he has an ear infection. So, we will go back to his regular pediatrician next week to have him checked again.
I also let the oncologist know, that I was unhappy with the pain meds issue, and the side effects. I have been alerting all of his doctors for months, that the "steroid rages" continue, despite being off meds, and nobody has ever offered up the fact that this can be caused by his neurontin. Quite the contrary, I have always been told that neurontin has virtually no side effects.
The oncologists response, and Ill point out, that it wasnt his regular oncologist, said, "He doesnt look like he is in pain." and I had to muster up any ounce of patience that I could find, to gently point out, that, HE IS ON PAIN MEDS! That's like the OB Coming into a woman's labor and delivery room and saying, "she doesnt seem like she is in pain" just because the epidural is working, DUH!! Of course, this is the same doctor, that when Andrew was writhing in pain, on a fentanyl pump in the hospital, she noted that it "seems as if he is faking"...HOW INSULTING!!! He has an amazing tolerance for the pain, 3.5 years of high doses of chemo, the big fat needles in his back....to not validate his pain was frustrating.
She said, "I deal with the oncological processes, perhaps he should see a psychiatrist."
UH! It is so frustrating, because the truth is, part of the "oncological processes" are the incredible damage that the treatment does to their bodies, they dont really even know what all of the side effects are (although nerve damage is documented and known!) and they really dont have a clue about what to do about the side effects. So, once again, the mom gets to figure this all out.....I just would hope the doctors wouldnt minimize and mock the side effects in the process!
Anyhoo.....aside from the sinus infection, Andrew is doing well, so is everyone else, except Doug. I heard him up throwing up last night, and in my half sleep dreamed that the vomitting virus was creeping around looking for me! I refuse to get sick! Doug was feeling better this morning too.
Today is swim team! This weekend is the Taste of Ladera. It is a really fun event, with food, games and music, if you are in the area...please stop by, we will have our "Alex's Lemonade Stand" booth. I am currently trying to figure out the best way to prepare...we simply can not make it onsite, it is too busy. I am trying to get 10 of the 5 gallon water bottles, and can make it up ahead of time (Country Time Lemonade donates the lemonade mix). Problem is, I cant find a water distributor around here....when I call on the phone I get routed around without being able to talk to anyone. Im sure it will get worked out....
Have a great weekend,
kim
Wednesday, May 16, 2007 0:43 AM CDT Well, I guess I got away too easily with the vomit session from Christine.... Andrew came home from school on Monday and began throwing up. Luckily, the little guy has a lot of practice, and is able to get to a toilet in time, and doesnt resist the bucket (as Christine did!) So, nothing to clean up, just up most of the night with the poor thing.
I asked him if throwing up reminded him of having cancer again, and he shook his head yes. I asked him what he thought of (I thought he would remember a certain time or something when he was sick), and he said, "I made it, I tell myself I made it."
He never ceases to amaze me at what he says....including, tonight at Open House.....
First, let me just say, that after being up most of the night vomitting, Andrew woke up feeling well. I kept him home from school, and he ate, felt better, kept his food down, and so we went to swim team. I wondered how he would do...having missed a practice (they learned the back stroke) and being weakened from the bug he had...but he did so well. He picks up speed and stamina each time, and has good form. One of the other moms said, "he really tries so hard, how old is he? He needs to be 5 to be on the team, is he small for his age?" She didnt know that he is small from treatment, and that his little body has been ravaged by chemo, but she was able to tell that he is determined!!
I went into work for a bit tonight, and Doug took the kids to Andrew's Open House, where they show off all the fun work they have done. On the way back from work, I called Doug and asked how things went, expecting him to tell me how impressed he is with Andrew's writing skills or something...instead he told me that Andrew was so upset about not being able to go to the Book Faire (they had books you could buy during open house), that he dropped the F-bomb while yelling at Doug in front of everyone! At the Christian school's open house! Oops...sorry I had to miss that! I told you that he says the most amazing things!!
Which makes me sooo happy that we are going to the clinic tomorrow. He was supposed to go Monday, but I called and said that I wanted to make sure to see a doctor and discuss the med situation...so, they said to come Wed. instead of Monday...so, tomorrow we will get his check up and blood work AND figure out a plan re: his pain meds.
More and more I am realizing that the meds ARE Causing the mood swings and rages ...and yes, Renee, you probably did mention the neurontin problem with Sam...Andrew has been on neurontin for so long now, that I never really thought about it. I always attributed his moods to steroids, treatment issues, etc. But now that we are almost 6 months off chemo and steroids, his moods are getting worse, not better. He can be so nice, but especially when he is tired, or has his mind set....WATCH OUT!
This weekend we will be at the Taste of Ladera. Last year we sold over 35 gallons of lemonade. Lemonade that I made from powder and water right there on the spot. Lemonade that I couldnt make fast enough. While my husband kept running back to the store for water and ice....AGHHH! This year, we are hoping to get at least some pre-made lemonade donated. We expect to serve even more lemonade this year, as the event is expected to double in size, and it's going to be near 80 degrees out! Wish us luck :)
Another thing on the horizon, is "Cancer Camp" as the kids call it. Last year they had so much fun, and in just 2.5 weeks they will be going again...one more fun thing on the horizon!
Thanks for checking in...please pray that Andrew's labs show that he is still in remission, and that we can get this med/mood/sleep issue worked out!
love,
kim
PS. We had a great Mother's Day. Or, I should say *I* had a great Mother's Day, the guy (Doug) that cleaned out my car probably has seen better Sundays. I took some pictures, Ill try to get them up soon, to show you the true riches of the gift of cleaning my van.
Sunday, May 13, 2007 0:56 AM CDT Hi Everyone,
Im sorry I didnt update sooner re: Andrew and his fever. Some of you have emailed with concerns, and I intended to update, but I got very busy (no, not busy cleaning my car...)
Wednesday night when I came home from the fundaiser, Andrew's temp had cooled, however in the middle of the night it spiked back up to 102. We went to the doctor first thing in the morning, and they gave him a different antibiotic (told us to stop the omnicef and put him on zithromax, which is typically what his oncologist likes him to be on.) Since then, he hasnt had any more fevers, and generally feels just fine.
I was sad to miss his Mother's Day Tea. One of the mom's in his class was very sweet to stop by my house and bring me my Mother's Day gifts (a beaded bracelet/keychain with his picture on it), a decorated bottle with home grown flowers from his amazing class garden, and some treats, oh, and a recipe book made by the kids, and a book that he wrote about his mom. We sat and snuggled together, ate the treats, I opened my gifts and he read my the books.
He also missed swim practice Thursday. He was bummed, and so was I, because it seems with each practice he just improves by leaps and bounds. He is no longer THE slowest...one of them, but he keeps up and I can hardly explain how full of pride I am watching him swim. Here is a picture of him a couple of weeks ago, they practice with their own age group, so you can see here how much smaller he is....and he works so hard to keep up!
So, Thursday was a day of rest, and on Friday we resumed normal life. Kids in school....I work Friday morning and then again Friday night.....but midday, I picked Christine up from school. She said her tummy hurt, "the throw up kind" (UGH!) so I found her a bucket (good think I have lots of items to choose from in my car!) and told her to hold it under her mouth. When we got home, I insisted that she keep the bucket, she (in her best teenager way) insisted that she didnt need to.....
I went upstairs to put the baby to bed, and....(some of you are jumping ahead and have probably guessed ....) and suddenly Christine begins screaming ...."Im throwing up, Im throwing up, Im throwing up...."
I know a kind and loving mother would have thought, "oh, my poor dear is throwing up." and, I did think that for a nano-second, before my mind was flooded with, "OH NO, She is no doubt standing in the middle of the carpeted family room barfing all over the place!" and "I hate cleaning up throw up, Id rather have some one poop all over the house, but not throw up, YUCK!" (side note...when I worked at the county orphanage, my coworkers and I, who often had to clean poop and throw up, realized that people generally fall into two categories; people that gag when cleaning up throw up, but can manage to clean up poop, OR people that gag when cleaning up poop, but can manage to clean up throw up.) I prefer poop.....not that I dont gag....but anyways.....and you would think after years of Andrew's constant vomitting I would have gotten used to it, but nope, still can hardly do it.
So, sure enough, I hurried downstairs, thanked God that it was in one place, and also an extra thanks to myself for packing strawberries in her lunch, which at least doesnt smell as bad, as, let's say hot dogs.
That tells you how I spent my Friday afternoon before going to work again.....
On Friday night, Andrew got to go to a special party. Some of you may know that we have a neighbor girl with a rare disorder, XP, which means she cant go in the sunlight, EVER. Even in the shade, her skin will burn and she can get cancer. Well, they opened up the big waterpark at night for her and her friends. It was such a great idea...I cant imagine not being able to let my kids outside in the sunshine....Andrew attended (while Christine tantrumed since she was sick and couldnt go....)
Today, he had a t-ball game and Christine is feeling better. So, besides congestion, everyone is on their way up.
I had an interesting conversation with a co-worker...I had mentioned that Andrew was having some problems sleeping because of his meds, and I told her what he was talking; tramadol and neurontin. She said, "neurontin?" ...."I was on neurontin for nerve pain, and after three weeks of crying and mood swings, and anxiousness, I had to stop taking it."
I had always been told that neurontin had virtually no side effects. However, I need to remind myself, that our oncologists (God love them!), usually note major side effects like organ failure, heart damage, secondary cancers, brain damage...because, besides the cancer, they watch for the life threatening side effects...but they generally tend to not pay attention to the non-life threatening side effects.
My friend said she took 60mg a day. This grown woman took 60mg a day, and my tiny son takes up to 800mg a day, not to mention his morphine-life tramadol addiction. Hmmm.
I looked up this harmless neurontin, and it mentions mood swings and aggression in kids....
Im not sure why I didnt know this before. Doug and I have been thinking that it was learned behavior from his steroid rages, or anger from going through such painful treatment for most of his life, but after reading about the drug online....Im thinking that the neurontin might be causing his moodiness and rage - which doesnt happen all the time, but it happens often enough to be a problem. anyways...one more thing to deal with. We go back to the clinic on Monday for his blood work, Im going to talk to them about this....not sure why the psychologist didnt mention it.....oh well.
Tomorrow is Mother's Day. I am thankful that God has blessed me with 3 great kids. Cancer aside, they have all been very easy from the start...good eaters, sleepers, no colic....Im a lucky mom!
Thanks for checking in on us,
love,
Kim
PS. look at this cutie!! AND...all 4 of her upper teeth are coming in!!
Wednesday, May 9, 2007 11:37 PM CDT Greetings from Lemonade Central....
Well, Whew! It has been a bit of a night!! It's been a good night overall, but things started to go askew at around 1:30pm, as I was getting ready to feed Elise and then tackle wrapping up the silent auction baskets - I got a call from Andrew's school that he had a high fever...103
So, I swooped up the world's most flexible baby that will never eat or sleep on a schedule (thanks to a busy life) and went to pick him up. On the way, I called our oncologist, as I was concerned that his fever would be so high while he is on two antibiotics (one that he is always on, and another strong one for a sinus infection.) She told me to bring him in....
uh, what? bring him in?? I have a fundraiser to put on in a couple of hours!! She said that if his fever hadnt gone down by the time the fundraiser was over, he would need to go to the ER, but even if it did go down, we need to go to the doctor tomorrow.
Thankfully the fever has mellowed out, so he and I will miss the special Mother's Tea that his class has prepared for us, and go to the doctor instead. Sort of reminds me of a few years ago, spending mothers day in the hospital..as long as I have my boy, we will make it special.
As for the fundraiser..honestly, it got off to a slow start. Many in our community had organized ribbon tying gatherings, to tie ribbons on the trees in support of our neighbors who lost all three of their children in a car accident. A lot of folks that had said they were coming, ended up doing ribbons...and I wondered if anyone would show up at all!
But they came, slowly, steadily, and we packed the place with more than a couple hundred people. It was really nice to see friends, old and new, and it ended up being just a great time connecting with a lot of great people. We made around $2000 (Im still counting)...Ill update the lemonade website later with the exact amount.
Since Andrew wasnt able to come, I recruited Brendan Finneran to thank the crowd and tell them how important it is to find a cure. Brendan is our friend, who on the day that he received a full scholarship to play Lacross in college, was also told he had bone cancer in his leg. Now, one year later, he and his fake knee/leg are going strong and ready to head off to his freshman year in NY in the fall.
It was at the fundraiser, that a friend informed me that another child was diagnosed with cancer this past week in our community. It made me all the more grateful for the precious folks that came out and supported the evening, and I pray that we find a cure soon.
Ill post updates on the lemonade stand at www.firstgiving.org/andrew2007 and Ill keep you posted on Andrew. He will be fine, it's just hard on his weak immune system to handle infections.
Have a great week,
love,
kim
Tuesday, May 8, 2007 10:27 PM CDT Hi Everyone,
We have all been very busy...tomorrow is our "Alex's Lemonade Stand Kick-Off" at BeachFire, a local restaurant. They are providing free hors d'ouvres and whether people stop in for drinks, appetizers or dinner....a generous portion will go to help fund pediatric cancer research. To add to the pot, many local merchants have donated items and we will have a silent auction too. In fact, Im just taking a break now from putting the baskets together.
If you are in the area, I hope you can stop by, between 5-7pm...it's kid friendly, so bring the family. You can find out more about our lemonade stands this summer at: www.firstgiving.com/andrew2007
The kids have been busy....we had a lot of fun social events over the weekend. Monday was "Donut's with Dad" day at Christine's school...and tomorrow will be "Muffins with mom" Andrew's school will have a Mother's Tea Thursday at noon...so I get lots of great time with my kids at school this week.
Today was swim practice, and Andrew continues to make great strides each time he gets in the pool. I did take pictures but have been so busy, they havent been uploaded, I will do that after the event tomorrow.
Please keep a family from our community in your prayers. This past week, a terrible rear-end collision on the freeway took the lives of all three of the families children, ages 5, 4 and 2. The parents are grieving terribly, as you can imagine, they will need to find the strength and purpose to go on....pray that God provides both to them abundantly, and comforts them each moment they are missing their babies.
Love,
Kim
Tuesday, May 1, 2007 2:56 PM CDT This entry is for Lisa M.
Lisa, you are such a wonderful source of encouragement....you have been there all along our journey, and I am blessed by you, time and time again.
When Andrew was first diagnosed, a "mystery lady" dropped off blankets, hand made blankets, at the hospital counter. We rushed down to get them, hoping to hug the sweet person that drove well over 30 or 40 miles...and she had disappeared (not wanting to bother us....she is NEVER a bother!)
On the day that Andrew received his final spinal tap, I was at the hospital clinic, and the receptionist knocked on the door and handed me a large shopping bag....full of home made blankets (my kids Love these....and even though Lisa and others have made us many, they still fight over having the dinosaur one or the Polly Pockets blanket...)...blankets and goodies and more....and I rushed out, and Lisa was gone! Again...that was quite a long drive!
This dear lady, has prayed and supported us, left my kids gifts and mailed them authentic Hawaiian flip flops....and would you believe, Ive only met her once! recently!
**Side note to say that there are so many of you that have prayed and showered us with support whom I have never met in person....this journey has blessed us with so many far away friends!
Anyhoo....Lisa finally met my kids in person, and my house.
So, when she recently wondered how I "do it all".....I laughed out loud and sent you cyber hugs, great-big-cyber-bear-hugs Lisa, and thanked God for you again, for your encouragement and WISDOM!!
You see, I dont "do it all"....it was so humorous of you to mention my "house duties"...because I know that you have witnessed the LACK of house-dutiness that goes on here...and yet, you love me anyway.
And today, this message is to thank Lisa, because she may be the only person that understands my priorities, I appreciate that she validates my desire to do what matters most to me.....
It wouldnt be my husband, who one recent Sunday refused to drive in my car to church, basically because there was no place for him to sit, except for on someone's school papers and a dirty baby bib.
It wouldnt be my mother, who said, "If people see your car and look inside, they probably think a homeless person lives inside."
It wouldnt be the teacher's aide that greets Andrew when I drop him off to school, who today commented that, "this is dangerous, you need to clean out your car."
No, those people are not Lisa. Today, I am thankful for Lisa!
You see, and join with me here Lisa.....
Each day, I am faced with many choices with how to spend my time.....
Do I take the time to make sure that my son has a balanced lunch that he will eat and enjoy, with protein, calcium, fruits and vegetables to help rebuild his weakened body....which is not easy, since the chemo has destroyed his taste buds, and he is very picky? OR Do I just let him get the school lunch - it will save time, but will not be as nutritious?
Do I work in his school one morning a week (and watch another child in a "child care swap" that allows me to work in his school...so that takes 2 mornings a week)...or, say Im too busy for that?
Do I go each Thursday morning to pray at his school, even when Im the only one....or DECIDE TO CLEAN MY CAR?
Do I spend time dealing with insurance issues, researching cancer journals for the lastest info re: leukemia and side effects.....or face the science fiction monster that is overtaking my house called "laundry"??
There are many ways to spend my day; doctors appointments, swim team and t-ball (some parents just drop their kids off and dont stay to cheer them on...not that there is anything wrong with that, but it's not for me), going to the gym (which I choose to skip), cleaning the house, raising money for pediatric cancer research, working part time, breast feeding a baby, choosing to stay home with my kids despite the financial hardship over working......
Im not saying my choices are better or right, in fact, there is probably a very well supported arguement for doing the basics (cleaning my car, doing the laundry, going to the gym)...and then adding the extras as time allows.
but for me.....certain things are no longer optional....so, time in my kids class or at their sport, will always be more important than laundry, .....putting on fundraisers to find a cure for kids with cancer, will always be more important that cleaning my car....that's just my world.
Not that anyone wanted to hear this explanation of how I spend my time, but I just wanted to put it out there, as it might spare me one more criticism when you see my pull up in my ride, and Sunday school lessons and a few french fries fall to the asphalt as my kids pop out.
and just to further make me feel better, this reminds me, Im not alone.
love,
Kim
Thursday, April 26, 2007 1:45 PM CDT AAAAAHHH! Just wrote a long journal entry and lost it, so, here we go again :)
Sorry for the long gaps in updating, it hasnt been intentional, just been really busy. I went to San Diego for a work conference, which was exciting professionally, but has me lagging with the rest of my life.
We are in full "lemonade" mode, with our big Kick-Off happening in a less than 2 weeks!
If you live in the area, I hope you will be able to make it; BeachFire in Ladera, on Wednesday, May 9th from 5:00-7:00pm. They will be having a special fundraiser including a silent auction; we have some great prizes, including a stay at the Victorian Inn in Teluride, Colorado! (thanks SMS!) I would love to email a flyer to those that are local, and have you pass it along to friends and neighbors...let me know your email and Ill send you one.
We also have our lemonade website up and running. It has all the info about the stands we are holding this year. You can also donate online from the website, so feel free to share it with others, even out of the area.
It's kind of cute, but often when folks come to the lemonade stands, they call Andrew "Alex"...it's a great time to tell them about the real Alex and the inspirational foundation that continues in her memory. The organization that is now run by her parents continues to fund much needed research, hand selected to go where it will benefit most! These kids are all on experimental trials, getting longer and more intense treatments than adults! With 1:330 kids getting a pediatric cancer, it's definitely a cause worth supporting.
As for my cuties..they are doing well. Andrew continues to plug along at swim team. He is excited to go each day, although he has shared feeling sad about going so much slower than the other kids.
I reminded him, that unlike t-ball and soccer, where most every kid plays, most kids his age are NOT on swim team. Many would not have been able to pass the try out, and we know a couple that tried out and didnt make it...so, while he may be the slowest in the pool, he is still faster than many kids his age - this seems to make him feel better. I also remind him, that he wont always be the slowest, but unlike the other kids, his muscles are just starting out after years of chemo. They are going to grow and get stronger...he has even been more mindful re: his eating habits, taking in more protein to build his muscles. These are good reminders for me too, it is sometimes hard to watch him, kicking and swimming so hard, but not going to far....saddened by how weakened cancer has left him physically, but proud of the determination and strength of will that it has developed in his spirit.
We have good news that I forgot to mention, Andrew grew again, he is now 43 inches and on the chart! This tells us that his endocrine system is working, and gives us hope that Andrew will be able to get through puberty without hormone therapy. Please pray for continued healing in this area.
Tomorrow we go to the loooong awaited appt. with the Orthopaedic doctor. I was originally told that he was very knowledgeable re: neuropathy from cancer treatment. I hope this is true and that he can help us find the best way to bring healing and pain reduction for Andrew.
The wean off the tramadol is going well. He now takes it every other night, and his neurontin has been increased. We have seen some issues re: sleep, but no increase in his pain, which is such a blessing. Please pray that Andrew's nerves will heal and he wont need pain meds long term.
The girls are doing great....Christine is more grown up every day. Elise is now saying, "Daa Daa" and something close to "night night"....
I will take pictures of Andrew at swim team today, he really looks so cute.
love,
Kim
Tuesday, April 17, 2007 11:31 PM CDT Hi Everyone,
Well, today was the first day of swim team practice. My little liquid was so proud of himself. As I helped him into his new "jams" (think boxer style speedos), he said, "This is my first time (with such excitement he was giggling.) not my first time swimming, but, you know, my first time wearing these and wearing goggles..." "Yes, it's your first time practicing on a team!!" I told him.
He was so darn eager he was beside himself, which was so great to see...he isnt very enthusiastic about other sports, except basketball...., anyhoo....he can swim, so this seems to be a good fit, or er, it did seem to be a good fit......
Id love to tell you that as my little guy stroked his way across the pool, that people gathered around to cheer him on, in awe of his great porpoise-like skills that propelled his body through the water...but, uh....
Er, the little kids had a little pep talk meeting on the grass, and then they went over to the pool and were assigned lanes....Id say about 35 kids spread out over 8 lanes, my guy is right smack in the middle, lane 4.
There is all kinds of hustle and bustle going on, so the coach asks the parents to move away from the pool, and they get the kids all ready....Im watchin, proudly, across on the other side, when he yells for kids to GO< GO< GO...and splash, splash, splash, tens of little bodies start to swim across the pool. Then, my guy does an awesome dive (he really has that down!) and after 2 strokes, he comes up for air, gasping, floundering, sinking, gasping, (repeat, repeat, repeat)people screaming, get him, save him, as he gasps going down.
Soon, one of the young coaches jumps in, IN HIS CLOTHES, and grabs Andrew. The head coach looks at me and says, "uh, we'll have to reassess him, Im not sure if he can do this, Ill decide at the end of the week. For now, he's in lane 1, so he can hold on to the side."
I felt so defeated for him.
He got out, to move to lane one. I reminded him that if he needs a break to FLIP OVER and FLOAT...take his time, catch a breath, relax..he can float, not need to act like he is going down on the titanic. I said, "You were just really excited, let's just take our time, and take it slow."
And that's just what he did, he plugged and plodded the rest of the practice, always way behind.
When all was over and he got out, he was so excited he said to the coach, "Do we get our trophy now?"
Um...not quite yet, but it was cute.
It's hard to watch him struggle, to be excited and try his best, yet just not have the strength to do what he wants to do. He is so brave, it stinks to see that cancer has stolen little things from him, but we pray that God restores him ten-fold.
So, Im just praying that this works. He may not be the best on the team, but he is a good little swimmer, and Im hopeful that by the time he makes up for not swimming all winter, and begins to gain more strength now that he doesnt have chemo, that he will do fine.
He said it was hard, but that he wants to do it again, and do it again he will on Thursday. Im kinda thinking this might be a good time to start taking up a hobby for me, like drinking...anyhoo.....
On the medical front....we got his lab results back and things are looking good.
At our visit to the clinic, the doctor went over his MRI. She said that his myelination is adequate for his age. His choroid plexus is enlarged on one side, and has a cyst, but it probably means nothing, and he doesnt have symptoms of anything, so.....no biggie. the choroid plexus is part of the ventricle on the brain where the cerebral spinal fluid is made....and I asked if it could be enlarged because he was getting chemo injected into his cerebral spinal fluid, having spinal taps galore, etc. etc....and I got the look I know all too often that says, "I really dont know, but its not cancer, so we'll let it be." She isnt worried about the cyst either, so.....Ill file it to the back of my overflowing file of things to worry about later.
I told her that despite major amount s of pain meds (400 neurontin and 1/2 tab of tramadol each night) Andrew will still complain of leg pains a couple times each week...I dont mean complain, he complains mildly more often, I mean complain to where we need to give him more meds. Howeever, the tramadol, that is given at night, and is a pretty major narcotic, and should put him to sleep, is not only not putting him to sleep, but over the past couple of weeks, he is having a hard time getting to sleep at all. I wondered if it could be tolerance building.....
She said, "YEAH! who put him on tramadol????"
(those of you who go to our clinic, may be getting that nagging annoyance that wonders why everyone doesnt know what is going on with your kid, frustrated that they are followed by so many different docs.)
Uh...the NP in charge of pain management pu him on back in OCtober. I asked her recently about when to wean, she said to try, I did, he was in excruciating pain, (crying at night) so we went back on.
Our doctor said that tramadol is highly addictive and tolerance building, and she would talk to the other docs about an alternative. She called me today and said that they want him weaned off the tramadol, and his neurontin will be at 200 in the am and 400 at night!
The neurontin also makes him sleepy, nauseas, etc......Im hoping that when we see this orthopaedic doctor at the end of the month, that he has some answers. I told our doctor that I was really looking forward to the othro visit, since the doc that recommended him said he was an expert at thses issues. then my doc looked at me blank, and said, "I didnt really know that he deals with neuropathy, did Dr. S really say that?"
So, hoping Im not banking on this doc for nothing, I really need someone to give me some feedback on how to handle his pain, his muscles, bones, nerves, etc.
Some say excercise...but too much starts the pain cycle....it's not an easy balance.
Anyways, we are just glad to be done with treatment and just trying to fix up the "loose endds" thankful for the clean lab results!! As we thank God for the healing he has done in Andrew, here are many friends that really need the same merciful intervention:
My dear friend Maureen's sister, Marilyn . Maureeen and I worked together at the county "orphanage" and Marilyn worked with us for a bit too. They have a lovely Christian family. Maureen and I were very active in pro-life activities, along with their dad for many years. They also lost a brother, Richard in a plance accident years ago. Marilyn's cancer is in advanced stages, she needs a miracle, and sadly, has 4 little children along with a husband that adores her.
Jassmine (no website) is an adorable girl, her leukemia recently came back and she is preparing for a transplant. They dont live "in" our neighborhood, but right outside of it. Her mom is a single mom too, making things all the more difficult.
Bailey (page name is "superbay") is a cutie patootie (not the girl Bailey, who is our neighbor) and his cancer has come back, not giving them many options. His mom just had a baby around the time I had Elise. You may remember that Bailey was in surgery recovery next to Andrew when Andrwe had an emotional over-reaction to the anesthesia (to put things mildly)
Christian is a boy from Andrew's school, and hie is preparing for a 2nd transplant, but needs his body to heal up before moving forward. Please pray that God clears all the cancer and infections and uses the transplant to heal him.
Alexia many of you have followed her for some time....she just had her 2nd transplant (the first one didnt work)....and, all I can say, is this is one of the toughest cookies I know!! Honestly, she was in critical condition even before her 1st transplant, with so many complications....and not only did she survive the first one, but she is holding strong for the 2nd one. Transplant is EXTREMELY hard on the body and organs....so, we pray she stays strong...we also pray the transplant is effective, because even if you are strong, if it doesnt work, and the cancer returns, there is little left to do. She and Christian are in similar circumstances, and I tell you that they have very poor odds, and I only say that to impress upon how serious the need is for prayers, knowing that God is able to heal all things!!
Please pray for them....also, let them know you are praying. A shout out to Julie for always leaving guest book messages to our friends. It is hard to describe how lonely cancer treatment is. You are isolated and dont have contact with most family and friends....you are in hospitals that besides not being super comfy, are filled with dying children and families in mourning...the enemy can really fill your mind with dark thoughts....you usually cant go to church or anything, due to the hospital time and isolation....so a word from a stranger, letting them know that you are praying, means more than I can really say.
Tell them Andrew sent you.......
And finally, our prayers to all of those grieving over the tragic killings at Virgina Tech. Doug went to University of Richmond (in Virginia) for his undergrad schooling and has many friends in that neck of the woods....thinking of all of them as we pray for comfort and peace.
love,
kim
PS. here is a picture of Andrew singing at Easter.....
Monday, April 16, 2007 9:08 AM CDT Sorry for the gap in updates....things have been picking up with my work, and we have also been working hard on the upcoming lemonade stands.....as well as just having fun :)
Today, Andrew will go to the clinic to have his check up with blood work. Please pray that all is clear.
We had a great Easter break, and just this weekend we enjoyed hanging out at the beach in the evening and watching a large group of dolphins swim back and forth for some time, we had a BBQ with Andrew's t-ball team, and Andrew joined the swim team.
As Ive mentioned, Andrew's physical skills are not as strong as other kids, due to all the side effects from treatment. During t-ball and soccer, it takes a lot of effort for him, is painful, and it's just hard to keep up. He does, however, do really well at swimming, and has decided to join our community swim team.
Tryouts consisted of being able to swim the length of the pool without holding on. I didnt know if he would be able to do it. By the end of last summer, he had learned to breath under his arm, and could have made the tryouts. Not having swam all school year, he pretty much forgot his breathing technique, and was back to the old...swim as long as you can without breathing (which is about 1/2 the length, cause he can really hold his breath!) and then come up for air, which causes him to lose momentum, etc. etc. So, I worried if he could pass.
At the coahes direction, he dove in, and swam well the 1st half, and even took a couple breaths under his arm. He kept going, and about 3/4 of the way he really started to poop out and I didnt know if he could push forward.....he floated a bit and took a breath....and managed to get to the end. He was very excited to make the team! He is now a "Ladera Liquid"..they have practice twice a week and swim meets, etc.
I am hopeful that this will really help him build his strength and stamina back up. He still battles fatigue quite a bit, as well as his depleted muscles. We go to the orthopaedic doctor the end of the month and I am very anxious to hear his opinion re: how to balance building Andrew up without overdoing it and sending him into a vicious cycle of pain (like happened in October). He is also on a very high amount of pain meds daily (neurontin and ultram) and I hope as he gets stronger that he will be able to wean off of them.
Thanks for keeping Andrew in your prayers, we are thankful for all that God has done in his life.
We have many friends that are struggling right now, and I want to post up their websites.....Im rushing to get the kids to school....but will be back soon to post the websites, as I know your prayers mean a lot to others facing this difficult battle.
love,
Kim
Monday, April 9, 2007 10:15 AM CDT Happy Easter!
I don’t know what happened to the dates, but the last journal entry was written Saturday night, not Sunday….not that it matters, but just thought Id make that point.
Here are the pictures of the kids with the Easter Bunny at our local mall. It’s one of those things that somehow got procrastinated (yeah, can you believe I hadn’t already jumped at the chance to get 3 little ones all dressed up and drag them to the mall?)….so, last possible day, we had plans to be there. I tried to get us there at the exact moment the mall opened, so that we could be first in line…..(last year that EB needed a “break” every few customers, his breaks were like 20 minutes where he left his chair and went somewhere else in the mall to relax –and probably go potty-…more rambling I know, but hence the reason a line at the Easter Bunny can be a long wait.) So, I tried my darndest, but got there 20 minutes after the mall opened, and stood behind about 15 other procrastinator families…..it seems as though EB has developed some stamina since last year, as thankfully, he didn’t take a break. He did however, have his “helper” bring him lemonade, which he drank through a straw, very carefully, through his suit, which my kids thought was soooo cool. A couple of times, Andrew said he thought it was probably just a man in a suit, each time I looked horrified, “Andrew, he can hear you, bunnies have great hearing, and Im sure that hurts his feelings. What if he thought you were just someone in a suit!!??”…..which made Andrew clear his mind of the thought, if just for a while.
Ok, EB time. Here is the pic;
While Im on the topic of memorable pictures, here is one of Elise, standing! She has a new little Winnie the Pooh push toy, I got it because she was starting to stand in her bed, and I remembered how Andrew really progressed when he got a push toy. Sure enough as soon as we brought it out, she crawled-leapt across the floor to it. She has had a blast pulling up and standing, and tonight she even climbed onto the seat and dove over to the other side. She has so much energy.
Here is another of her later that night, still going strong;
Back to Easter….
We woke up early and the kids found baskets. It really was a surprise, as their poor bedtime behavior almost scared the poor bunny, but he was kind enough to stop in anyways.
The other day, Andrew and Christine were talking about the toys they wanted from the Easter Bunny. I told them that they must be confused with Christmas, because the Easter Bunny doesn’t bring presents, some candy, maybe, but not presents.
They insisted that last year, they got a toy. I conceded that perhaps a small trinket type toy (as I kicked myself for getting them anything besides candy, and setting a precedent for Easter’s where presents were expected. Not to be confused with the precedent set by some parent in Andrew’s class, who gives out $20 bills from the tooth-fairy…causing Andrew to wonder why he only gets $1 …why would the tooth fairy be so unfair and give someone else $20, when their tooth wasn’t even gold?…of course, my answer, that child must have a clean room and be very obedient….but back to the Easter precedent of toys in baskets…..) The kids got new socks and underwear, and a small toy…..they were happy.
We then got all dressed up, I really like being able to put the girls in matching outfits, and Andrew’s coordinated too. Andrew sang in the first and second service. Here is a clip:
click here and go to archive of holiday service
Afterwards, we went to brunch, compliments of Grandpa and Grandma in Georgia. Andrew ate his weight in bacon, reminding me of his steroid days (minus the raging tantrums, thankfully.) When we came home, there were treats on the porch from a mysterious Easter Bunny, the kids squealed in delight, so excited. Thanks to the kind EB!! That was very sweet and much appreciated.
In the afternoon, Doug took the kids on a nature walk, and also to a park in our area with a climbing wall –which the kids are into.
It was a great day, and through it all it was fun talking about Jesus, reminding each other that He died, but now He is alive, He can live in our hearts and one day we will all be alive with Him in heaven forever!
I hope you all enjoyed your Easter too,
Love,
Kim
Sunday, April 8, 2007 1 1:23 PM Happy Easter!
I feel as if the kids have been celebrating all week, with parties at school, a special package from their Grandparents and Aunt Jenny, today's (last minute) visit to see the Easter Bunny...and then tomorrow morning!
Last week at church, the kids got palms in their Bible study class. Christine was so cute, she kept waving it saying, "Hosanna, Hosanna!"
I asked her if she knew what "hosanna" meant, and she said, (in a dramatic voice, while waving her palm), "Save me Jesus, Save me Jesus!" I thought that was so cute!! As it turns out, she didnt learn it at church, but in preschool, from her amazing teacher, Miss Jen. It has been a blessing to know that the kids learn about Jesus in school, it makes the holidays so much richer, knowing that they are learning the true meanings in school.
Today we visited the Easter Bunny....nobody cried! I have some cute pics that I will post tomorrow.
We are going early to church, as Andrew is singing in the choir. The church is online and they will archive the service. I will post a link later, so you can watch Andrew singing.
Guess who is pulling herself up to stand? Elise! Andrew was able to do this at 7 mos (and cruise around the house, going all over while holding on to things.) Elise is 8.5 months, but what is so amazing, is that she is teensy, eeny tiny!! She still cant sit up alone, because her little body is not strong enough to hold up her head....but she crawls at lightning speed, and now the standing up!!
Ill put the pics and choir link up tomorrow, and share more about out Easter.
I hope that you all enjoy the day....
He is Risen!!
love,
Kim
Monday, April 2, 2007 7:18 PM CDT Hi Everyone,
We are doing well, I cant believe it's less than a week until Easter!
Today we went early to CHOC for Andrew's MRI of his brain. He had asked if he would be getting a shot, and I confidently assured him there would be no needles...(can you guess what Im about to say????)
He was, as usual, a trooper, laying still for the procedures...then the tech came in and said, "It's time for the needle."....before I could even catch my breath, Andrew asserted himself,,,,,
"WHAT? NEEDLES?? NOOOOOOOO THere will be NO needles!!"
The man said yes, and I hurriedly shuffled over to the table where Andrew was now sitting upright, and asked the tech, "needles?"
Tech: "Yeah, for the contrast"
Me: "I was specifically told they were not doing contrast"
Tech: "yep, contrast"
Then it was time to soothe Andrew, and explain to the tech that he wasnt a big fan of surprise needles and I needed a moment to explain my mistake (apologize and bribe), and then he would be fine. I informed the tech of how Andrew likes things to go.....
Hold the needle against the skin, let Andrew count to 3, then insert the needle.
I also filled him in on the bright-red-arm-incident from a few weeks ago, in hopes that he would take the tourniquet off early.
So, All was set....except the tech was holding the needle away from the arm, so Andrew told him, "You can put the needle on my arm, but dont poke me yet."....the tech complied....ta da!
But part way into the injection, Andrew must have moved, and they had to try again, this time in the other arm.
As you can imagine, we had a few minutes of, "NO YOU DONT GET ANOTHER CHANCE"...but he finally gave in, although he let the tech know if he messed up again, that would be the end of it, no 3rd chances, too bad!!
The 2nd try worked fine, and Andrew got a cool basketball video game as his reward. He initially insisted on 2 toys, since he had 2 needles ......but that was before he saw the cool video game (he is used to the cancer clinic toy box, which is filled with happy meal junk)
He went back to school later in the day and is doing fine. I dont know how long it takes to get the results. They are basically comparing it to his past MRI's to see if there is improvement or further damage from the chemo and radiation. Not that anyone even knows what they are looking at, since his outward performance doesnt match the pictures,,,, but it's good to see how things look now that treatment has ended.
The kids had a busy week; little league pancake breakfast, birthday parties, class kindergarten BBQ, Neighborhood Easter carnival-thingy-with-egg-hunt, t-ball game, etc.....all the things for which we are thankful, so appreciative that Andrew is doing well and can partake in fun kid stuff.
By the way, with Springtime comes lemonade....we are gearing up for our 3rd year of Alex's Lemonade stands.. www.alexslemonade.org
Our Kick Off will be at BeachFire in Ladera Ranch, Wednesday, May 9th from 5-7pm...stay tuned for more details.........
Tomorrow I will meet with the psychologist that does Andrew's annual testing.....his appts for the actual testing should be coming up soon.
Thanks for continuing to pray for Andrew as well as our cancer friends and their families,
Love,
Kim
PS. Julie, Andrew is all into losing his teeth, but not from falling off a bike! Ouch! 4 loose teeth sounds like a pretty nasty crash...we are praying that she is feeling well soon!!
Wednesday, March 28, 2007 5:34 PM CDT Hello from beautiful, windy, southern California....
Yes Karen, it did feel like we were going to be blown away yesterday. I love being all bundled up inside while the winds and such thrash about outside...thankful that I live in a sturdy house, and thanking God I didnt get the flip of the coin that would have me trying to hunker down in a roofless shack in a 3rd world country...we are fortunate in so many ways!
The kids are doing well, having good weeks. Friday Andrew will go to the orthopaedic doctor, and Im very interested to hear what he recommends re: Andrew's weakness and pain issues.
Ok, for my reality TV friends, did you watch Idol?? What, and I mean WHAT???? is going on with Sanjaya's(sp??) hair??
I feel bad for the kid...he is, after all, just a kid. He obviously sings well enough to have made it on American Idol, so Im not gonna bash his singing, or go on a hunger strike (yeah right!)...but, that hair, certainly there must be "people" that could have (should have) stepped in and said, "you have handled enough ridicule, we cant let you do this to yourself"....it's like the Anna Nicole situation, where those close to the person dont step in when they should...and now, the poor kid is known as the pony-hawk idol.....
and, while Im on the reality tv bit, for all my (secret) I LOVE NEW YORK watchers.....who do you think she will pick?? I am so mad that Chance didnt take the money.....I really hope she picks Tango. The show isnt as good as Flavor of Love (speaking of Flav, I hope he helps her pick the winner!!)....but I am looking forward to Monique's charm school, LOL!!
Thanks for checking in.....
love,
Kim
Monday, March 26, 2007 12:53 AM CDT Hi Everyone,
Andrew enjoyed a lot of fun activities this weekend, including a t-ball game and birthday party.
Andrew had a great game on Saturday. His coach goes the extra mile to give him instruction and encouragement. Andrew really did well with hitting the ball and getting on base this game. He also paid better attention and made attempts to get the ball while in the field. We were very proud of him!
He is much slower and less coordinated that the other kids...for many reasons; bone pain, muscle weakness, overall stamina issues, etc. On Friday we will go to the orthopaedic doctor. Andrew still walks on his toes, has a lot of pain and gross motor delays, so Im hoping this doctor will provide some insight into how we might make some improvements for Andrew.
Andrew has also been having some flare ups with anger. It's hard to know if it is a result of the pain and trauma he went through or if he "learned" some things from all the steroids and the rages they brought on. Sometimes he just cries and says he wants to die. Again, as a parent, it's difficult to know what is typical kid drama of the "I-hate-you-and-wish-you-werent-my-mom" variety, or how much is truly the pain of all he has gone through and witnessed. We are working on this area, and pray that God heals Andrew's heart the same way He healed his cancer. Andrew is usually such a kind, lovable, caring, funny boy, it's hard to watch (and also hard to discipline) the outbursts.
The girls are just doing perfectly. Elise has increased her eating repertoire to include yogurt, soft cheese, and cheerios. She is still a big avocado eater....we are holding off on the bananas and replacing them with prunes, can you guess why?? Poor little sweetie. She is also crawling at record speeds around the house....oh, so much like her brother.....(Christine on the other hand, would sit in the same spot all day with a toy, she was NOT BUSY like the other two.)
As the Easter season approaches, we think of the amazing gift of eternal life that Christ has given us. In the hubbub of bunnies, candy, eggs and pastel colors.....remember that the real message, is that Christ has given us all the gift of eternity with Him.
As the Bible states, death has lost it's sting. The enemy that tries to destroy us has no victory. The life that God intended for all of us is not on this earth, but will be fulfilled in Heaven. We have seen so many friends go on to Heaven, Easter is a time to celebrate that their death was not permanent, and they are with Jesus, thanks to what was accomplished on that Easter thousands of years ago.
Thanks for your continued prayers,
love,
Kim
Thursday, March 22, 2007 10:48 PM CDT Well, I had an interesting conversation with Andrew tonight. He let me know that he and Christine have decided that they want a big sister. Here's how it went:
Andrew: Christine and I want a big sister, can we get one?
Me: Oh, a big sister? What made you think of wanting a big sister?
Andrew: I dont know, we just want one.
Me: Ok, that sounds interesting. We can talk about it this weekend.
Andrew: Can we get one this weekend?
Me: No, you dont just go "get" one, you cant buy them at the store.
Andrew: But cant we go to the orphanage and get one?
Me: It takes a long time to pick one.
Andrew: How long?
Me: About a year.
Andrew: (look of shock on his face)
Me: They dont just have lots of big sisters hanging around the orphanage. Here, Ill tell you what, we'll look and see who needs a family.
**I had this great idea that we could look online at the County's "Wednesday's Child" page....which lists hard to place kids (older kids included) who are available for adoption.**
We scanned the list, mostly of sibling groups and older boys. There were a couple of girls, mostly siblings....We looked through the pictures. He asked questions....
Andrew: Hispanic? (it listed their nationality)....Will they speak our language?
Me: yes, they speak English.
Andrew: Ill take them.
Me: Well, we can talk about this tomorrow(not sure why I am saying that...we arent getting any big sisters, but it buys me time, or buys him time to forget about this.)
Andrew: Can we go get them tomorrow?
Me: No, it takes a long time. The people need to come check our house, make sure everyone is cleaning their room, making sure everyone is getting along and not fighting or yelling, make sure that people are nice to each other, sharing, keeping play rooms clean.....
Andrew: (looking discouraged, because clearly we would be disqualified.)
Me: Let's just talk tomorrow, Ok?
Andrew: OK.
I think it's awfully sweet that he wants a big sister, and after working in the foster care system, I wouldnt be totally against "getting" one, but clearly our family is a tad too busy trying to get back to normal. Maybe one day when the doctors appointments are less (Andrew has his MRI of his brain on April 2nd, the first part of his neuropsych teesting on April 3rd, and his looong awaited orthopaedic appt. on March 30....not to mention his monthly oncology appt. in a couple weeks.)
Everyone is doing well here...Christine has a new belt that she likes to wear (I must get a picture of it!). Elise is showing the early steps of pulling herself into a standing position, and Andrew has a new set of books - The Cul De Sac Kids - that he is reading through.
He has decided that he doesnt want to play soccer this next season, but would like to join the swim team instead. Our community has a swim team, try outs are coming up, so I guess we need to get in the pool and practice.
Here is a funny link, Im sure all the moms will enjoy it. Im glad someone put this little clip together, if for no other reason than to let me know that Im not alone in the world.
family van
love,
Kim
Sunday, March 18, 2007 10:17 AM CDT Hi Everyone,
Andrew had a busy weekend, which began early Friday morning. We drove up to the Mission Hills (northern part of LA, a 1.5 hour drive) to their police department for a St. Baldrick's Fundraiser.
St. Baldrick's is a fundraiser that is held on St. Patrick's Day each year, where people shave their heads (get it? "bald" rick?) after gathering sponsors. The money goes towards pediatric cancer research.
St. Baldrick's events are held all over the country, and this particular one was put on by the Los Angeles Fire and Police Departments.
Kelly Taggart, father of Andrew's buddy John , is a fireman and particpates each year. He invited Andrew to come and participate...specifically, Andrew got to have the honor of shaving Kelly's hair off!! After shaving he had fun rubbing powder on Kelly's head.
It's a special honor to participate, and we appreciate Kelly including us in this fundraiser. Our hearts felt the absence of John , and I prayed that the money raised prevents other kids from going to Heaven so soon.
Andrew also had fun going in a ride in a police car. Here he has learned how to turn on the sirens and is excited at his new discovery.
Here are Andrew and Elise looking like little leprauchans in their St. Baldricks hats (you'll notice that Elise and Christine have matching outfits :) )
Those of you interested, check out St. Baldricks and find an event near you next year....it's a great way to help out kids with cancer.
The other exciting adventure this weekend was a dual sleepover.
Christine's friend Jordan has twin brothers, Parker and Connor. The boys are in Andrew's class and two of his good friends. On Friday, Christine spent the night with "Jordy" and the boys all slept here.
There are a few pictures in the photo section of the kids with their friends.
Yesterday also included a really fun birthday party of a friend, complete with bounce house, ride-along train, pinata and more.
The kids were so pooped out, that Andrew was too tired to go to his t-ball game.
Today we will go to church and rest. Much needed rest.
We are so thankful to get to enjoy fun events with the kids. I hope you all have a great weekend too.
love,
Kim
Thursday, March 15, 2007 0:11 AM CDT Hi Everyone,
Thanks for keeping Andrew in prayer. We went to the clinic today and his blood counts are all looking good. I was so relieved to see the white count come back down.
We went in the afternoon, after school. When you are in the midst of cancer treatment, you get morning appts. Makes sense I guess, since you are too sick to go to school, for the most part.
The afternoons are for the "off treatment" folks, sometimes it's called "late effects clinic" ....as most of the kids are being treated for some side effect or another, as well as having their labs monitored to make sure the cancer doesnt come back. So, the afternoons are where we get to run into old friends that are doing well. When you go in the morning, you are surrounded (and that room gets pretty crowded, so I *do* mean SURROUNDED) by kids that are just struggling to make it. It is a real treat to run into old pals that are doing well....those that you were in the thick of things with......those that you prayed for.
Today, we ran into Zachary. He and Andrew are about the same age. Zachary was diagnosed a handful of months before us, so when we were diagnosed, his mom was encouraging us that things would get better....and then they were moving on to maintenance, reminding us that we would be there soon too. Now, Zachary is off treatment for several months (not sure how many Gina)...and he looks great...healthy, cancer free!!
We also ran into Taylor. I still remember meeting his mom in the restroom area of the 3rd floor. She was so upset, devastated, crying. It was August of 2004...Andrew had been sick a year, and was going through some tough times...inpatient, but getting stronger. I remember Taylor's mom telling me that her teen son was just diagnosed, and he was having a hard time getting into remission...we prayed, we would see each other periodically over the next year...as Taylor had a transplant. Today, I saw Taylor and it was such a treat! He looks great and is surviving well post transplant. The sad thing, is that (as can be the case) the steroids did so much damage to his knee joints, that he can barely walk. He will be having knee replacement surgeries soon - AND graduating high school. It is great to see what God can do.
**Insert** please pray for Alex , he went through the same treatment as Andrew, at the same time. His mom, Mary and I are online friends who "held hands" across the internet, while our boys really suffered. Alex went off treatment when Andrew did, and is doing well, except the steroids also ruined his knees and he had surgery today to replace his knee. Please drop him a note and let him know you are praying that all went well and he recovers fully.
Today Andrew got his check up, and labs. He did pretty good with the labs....pretty good = allowing the nurse to put on the tourniquet (rubber thing that tightens upper arm)...and then as the nurse held the needle to the vein, he counted....we only had to repeat 1.....2.....a couple times before he said 3.
And as she took it, he watched quietly.
And when she finished, and undid the tourniquet, he screamed blood murder!!!!
I looked down, and his entire arm was dark red...not like blood was on it, but like he was sunburned. I kept comparing it to the other arm (as much as I could while he screamed and held his arm...)..and it remained dark red.
The nurse said that sometimes that happens, when they cut the blood off with the tourniquet and the arm "falls asleep"...and then when the blood rushes back in it hurts a bit and looks red. Well, ya learn something new every day!
Andrew's arm recovered, and he is now sleeping, healthy, cancer free.
As for other things around here....everyone is doing fine. I have posted a picture of Andrew and Christine, ringing the school bell.....let me give you the back story.
Each day, someone get's to ring the bell which announces that it's time to line up. The entire school lines up, says the Pledge to the Bible, and the Pledge of Allegiance to the Flag...and birthdays are recognized, etc.
This, apparently, is a big deal (at least to Andrew)...and all year he has wanted to ring the bell. Unfortunately, when your mom drops you off at school post-bell, you dont get to ring it.
Many days, I encourage him to wake up (it is still hard for him to get up in the morning, but getting better)....get dressed, no, turn off the tv and put your socks on.....eat breakfast, take your meds...why is Christine still naked? The baby pooped, change the baby, now she wants to nurse....pull her away but she screams, ok, how much can I feed her to satisfy her so I can get Andrew to school? Did I mention making lunch? brushing teeth? doing hair? what folders do you bring to school today?? and get into the car........but despite my encouragement, even when we get these things done with minimal tantrums, ...when he gets to school, and asks the principal, "Can I ring the bell today??"...the usual response is, "So and So already asked."
So, this picture is special (thanks Christi for having yoru camera ready for this special day!), because Andrew rushed into the office to attack, er, I mean, ask the principal (the legs in the background)...and he was granted the noble task!
Because he is an amazing big brother, he let his sister ring it too...and let me tell you, it rang really loud,
because she stuck out her tongue which gave her much more energy to swing, and ring that bell!
love,
Kim
Tuesday, March 13, 2007 11:58 PM CDT Hi Everyone,
Andrew is feeling much better. His eyes had become so infected that they were swollen. They look normal now. Tomorrow we go in for labs, so please pray that all of his blood counts have evened out and everything is clear.
It has been beautiful weather here....and with daylight savings in effect, it feels like summer.
Ill update again after we get out lab results back.
Love,
Kim
Thursday, March 8, 2007 11:57 PM CST Hi Everyone,
Ill start off by saying that Andrew is fine...but it has been a crazy week.
He came home from school on Monday, complaining of a headache, and his teacher said that at times he seemed tired. She mentioned, which is true, that it's hard to tell when he isnt feeling well, because one minute he is complaining that he is tired or something, and then he is running around fine.
This has been the case throughout treatment. He would be pumped full of chemo, vomitting, barely walking, blood chemistries at critical levels, but he would have times when he seemed so full of life.
It's easy to think that perhaps he is "faking" when he says he is feeling bad...however, I am more inclined to think he is "faking" when he acts like he is feeling good....Mr. Social doesnt want to miss out, and he pushes himself, sometimes unaware that he doesnt feel well, since, frankly, he has spent most of his life feeling like crap, and he often over does it, and then crashes.
So, Monday, he came home, and by that evening he had a high fever. Now that his port is out, we get to *enjoy* fevers at home. He still has a fragile immune system, so we keep an eye on things, but we dont have to rush off to stay in the hospital anymore.
He has been home all week, miscellaneous complaints of headache (relapse symptom), fevers (relapse symptom), lethargic off and on (relapse symptom), legs hurting (relapse symptom)...you get my drift.
All of the basics of life are "relapse symptoms" or so it seems.....
I took him to the our pediatrician...since now that he is OT he only sees the oncologist for monthly check-ups and "long term effects" special visits...but for regular stuff we go to our pediatrician.
Long story short, she was concerned and wanted to do labs. She had them done stat, so in a few hours she was calling, saying that his wbc was high (relapse symptom for Andrew)...and that she had been trying to fax the results to the oncologist to discuss them with her, but hadnt been able to get through.
As much as I am grateful that Andrew is doing well, and most people say, "now he is done, arent you happy??" and I truly am....but, for 40 months, chemo was coursing through his veins....if cancer was in there, the chemo was keeping it in check...now is the time when we step back and see if the chemo did it's job. Realistically, now that he is OT is when we "wait and see" and it is the time that a relapse would most likely occur (if it were to occur...which we are hopeful it does not...) but this first year off treatment is particularly stressful.
I later spoke with our oncologist, and she said that the rest of his counts indicate that he is trying to fight an infection (which his body struggles to do with his low immune system)....but no cancer cells were reported. They ordered him a couple more antibiotics (in addition to the one that he is already on.) We will have him checked again next week, and labs will be redone, but we have faith that he will be fine.
Today was our friend Amy's funeral, I was unable to attend due to Andrew's illness, but it only made my fears run deeper, being reminded of how cruel leukemia can be. Please keep her sweet family in your prayers, that God would bring them comfort during their grief.
And, it's not enough to worry about relapse (which equals a really bad situation)...but, our insurance has been a pain.
Doug switched jobs a few months ago (not sure if I ever mentioned that....) but we are on COBRA as of Feb. 1st. But, Cobra takes a few months to get into the system, so everywhere we go, our insurance is denied....no big deal at the doctors office...but at the two pharmacies I had to go to (hard time getting Andrew's drugs)...I had to pay out of pocket...eventually Ill get reimbursed, but it just is a hassle and stress.
While Im venting about insurance...the state did in fact lose our grievance report (my long letter and letters from Andrew's docs re: Kaiser)....so I am resubmitting it....and in the meantime, I get, no exaggeration, 5-15 medical bills a day. Anyone that has been to my house can tell you my kitchen counters have stacks and piles of medical bills....I have boxes of them in the office.....and one day, one week, some year, I will sit down and open them all and input them into the world's largest excel spreadsheet in an attempt to make sense of it all...but for now, they are being ignored in an effort to spare my sanity.
On the good news side of things..........
The kids had a great time at their Dr. Seuss's birthday parties last week. I forgot my camera at Andrew's party (his teacher took some, so my cute scrapbooking embellishments will get to be put to use!)....here is Christine with her BFF...........their class wore jammies......
Here are my bathing beauties...........
love,
Kim
Sunday, March 4, 2007 0:38 AM CST Happy Weekend,
Honestly, as beautiful as the weather has been, and as fortunate as we have been on this journey, sadness has crept into my weekend.
Today, I went to visit our friend, Christian at the hospital. He is struggling after a return of his cancer. Covered in bruises, and barely the strength to eat, he continues to battle this horrible disease. Christian is in 8th grade at Stoneybrooke, the school that Andrew attends. The rest of the 8th graders are on a trip to Washington DC this week - Christian should be there. Cancer is so mean and unfair, it's a horrible tool of the enemy, set to destroy young lives.
I am thankful that I was able to bring Christian a quilt, made by my church, and prayed over with many prayers. It is my prayer that the power of God that is able to save all of man, will heal Christian. Please pray, that God will have mercy on this sweet boy, and his family, and do a mighty work in him.
This evening, Andrew and I prayed for his friends. We prayed for Amy....a young girl who was diagnosed with leukemia just a couple months after Andrew. We went through treatment together, spent clinic and hospital stays together....her leukemia was less aggressive than Andrew's....but no cancer is a "good cancer." Amy's leukemia spread, and tonight, after goodnight prayers with Andrew, I received the message that Amy went to Heaven this afternoon. She is a sweet girl, she loved to hold Elise, she enjoyed Christmas music all year round, Amy had the largest wardrobe of beautiful pajamas, and always had a smile....and tonight, her devoted parents and brothers are missing their princess. Please pray that God can comfort hearts that are so broken.
Amy and Christian, and all the many friends we have met along this journey, inspire me to pray, to raise money towards a cure, to cherish the little moments with my kids.....and to thank God, that He was gracious enough to heal Andrew and allow us to enjoy so many wonderful times together as a family.
Heaven is not a bad place, we have many friends up there who will greet us one day. Thank you Jesus for allowing us the hope of eternity in Heaven, that no matter what happens on earth....your will be done.....that we would be with you again, in a place where there is no more pain, no more sadness, and no more cancer.
May you all make the most of your day....
love,
Kim
Friday, March 2, 2007 0:13 AM CST Hi Everyone,
Life is going along like normal, as much as one can be normal when they have gone through childhood cancer in the family.
Christine has had fevers, infections, etc. off and on since Nov. or Dec. Typical stuff; flu, cold, sinus infection, ear infection. fevers with some of those. I realize most families have had similar bugs off and on too, after all, it's "cold and flu season"
She has also had times where she cries, saying her legs hurt. Tuesday we met some friends at the mall for a "rainy day play-date" and she was whiney, crying that she needed to be carried. At one point, she was laying on the floor, saying it hurt to walk. These symptoms have been off and on for the past 2 months. Could be growing pains, or attention seeking, who knows.
The symptoms for leukemia are; pain in legs, recurring fevers and infections, bruising.....most kids have a couple of months of ear/sinus/throat infections that just dont seem to go away with antibiotics before they are diagnosed with cancer.
Andrew was unusual, in that he had not had any infections or illnesses before we found out he had cancer....he was "very healthy" (or so we thought.)
So, you may see where this can drive a parent crazy....when symptoms that most kids have, are the same symptoms as leukemia.
I really hadnt thought about it TOO much (okay, I did have the oncologist check Christine's spleen -which is usually enlarged when they have cancer- at Andrew's last appt.)...but really, I knew that she was fine.
On Tuesday, after our whiney trip to the mall....I noticed strange markings on her legs, they looked like some sort of blood infection under the skin.
I tried to get ahold of one of Andrew's oncologists, but they were in a meeting, so I took her to our doctor. The discoloration on her legs had faded greatly, although still visible (thank goodness, or I would have looked like a complete fool.) Everything else seemed fine. I asked if we could do a blood test, just for the heck of it (okay, so I could sleep.) and the doctor agreed.
Sweet Andrew, he knew Christine was going to get a shot, and he was full of "helpful tips", as he calls them.
"you know what I do Christine? I just tell myself, 'that needle's not going to be in there forever' and think about other things."
My brave boy....he tried so hard to make her feel better, but when it came time for her blood draw, Christine became hysterical.
She's a daddy's girl, so I thought it would be best if Doug took her back to have her labs.
She screamed bloody murder for nearly 10 minutes. I was in the hallway with Elise, Dad and Andrew were "helping" Christine. Finally, Andrew came down the hall and said, "Mom, she's having a meltdown!" uh...yeah....so I heard!
Finally, I went back there, and Doug and Christine were squaring off in the hall....they hadnt even taken her blood yet! When she was me, she ran away and his under a chair. I went and wrangled her away, and brought her back to the lab.
So, I sent everyone out, and I sat with Christine. Well, really, I held Christine in my lap and told the tech to quickly take her blood.
Poor thing, she screamed and tried to squirm. The tech looked at me and said, "Mom, are you gonna be ok with this?" as if to say, "will you be able to handle watching your baby girl get a needle?"...um, yeah.....after watching my baby get big metal tubes in his back, and be pumped with chemicals that give him ulcerated sores throughout his body, and have such severe pain that he couldnt walk, and vomit for months on end and develop anorexia and get a tube down his nose.....
"Ill be fine" I answered.
As Christine likes to admit with a stubborn tone, "I wasnt brave!"
Good for her, I wouldnt be brave either. Im just thankful she wasnt the one with the cancer....not sure how we would have made it, Andrew's strong spirit definitely got us through tough times, times *I* would never have been able to have endured.
Christine's blood work was fine, as I really thought it would be. It's just a reminder that even typical childhood maladies like colds and growing pains can strike fear in your hearts...as nothing is really the same for us anymore, and cancer is never far from our minds.
On the way home, Andrew said, "I feel bad for Christine, I wish I could have gotten the shot instead of her."
Christine is feeling fine, it only took about an hour of screaming for her to get over it.
The kids are very excited, as tomorrow is Dr. Seuss's birthday. Christine gets to wear her pajamas to school, and Andrew's class will be eating Green Eggs and Ham (Ill be scrambling 18 eggs and some green food coloring before school tomorrow.)
I found some super cute Dr. Seuss cut outs for their scrapbooks, which makes me so excited to take pictures :)
The weather here is close to perfect again.....sunny and bright....
love,
Kim
Sunday, February 25, 2007 10:53 PM CST Hi Everyone,
It's been a weekend of milestones for the kids. Little "firsts" that sometimes get overlooked in life, but that we are celebrating around here.....
Christine has spent all day talking about, "Can you believe Im in the 4 year old class at church now?" "I get Bible Bucks!"
Bible bucks are an incentive deal they do at our church. Andrew has been getting them for a while, and is always keeping meticulous count of how many he has, and what he will buy with them.
Basically, if you bring your Bible to church, you get one. If you are well behaved, answer a question correctly, etc. you get one. Then, at the end of the month, you scrounge around your mom's car, er, I mean, look through your Bible, and gather the BB's you earned, and cash them in for junk, er, I mean, cool toys.
Christine now gets to partake in this program, being 4, and not 3.
She also was excited, to swing in a big kids swing, not the baby kind. Doug took the kids to the park this afternoon, and they have baby and big kids swings. Christine was talking about it all night, "I dont swing in the baby swing anymore, Im a big girl." I was really proud of her....melancholy that she is growing up, and then I realized,,,, she swings in big girl swings everyday at school, they dont even have baby swings at her school.......I guess it was a big deal because it was *this particular park* where she advanced to the next swing.
In any event, she is growing up, taking pride in making her bed each day. So much pride, that she refuses to get under the covers at night, for fear she'll mess her bed. She is four.
Andrew had a banner night. We began calling him "Sam I am"...(because the character who refuses to eat in the book is not named, so we called him Sam....) Anyways. As I have mentioned, the chemo destroys the taste buds, making foods taste different, metalic, just yucky.
We have tried to be good about setting healthy eating habits (at least in front of the kids, I eat my pint of Ben and Jerry's after they go to bed.) Andrew is now at risk for eating issues (for many treatment related reasons)...so all the more reason to have him eating healthy....but his taste buds are only interested in bland foods. White rice. bread. cheerios. Not much else.
We have not let up on what we offer, although we never make him eat stuff he doesnt like. We do however, offer and bribe him to taste everything. He usually sticks to his white rice. In this past month, I have made the final move, and switched us to a whole grain rice. Now the world stinks, and he is upset most nights.
So, tonight, I asked him what one thing he wanted, and he said Watermelon. So, watermelon, sweet potatoes, steak (filet mignon on sale!! Yummy!) and whole grain rice was served.
Andrew sat with his plate of watermelon, and I encouraged him to try the other items. I mean, the whole grain rice tastes pretty close to the white rice, but he wanted no part. Finally, here comes the bribe....dessert for the kids that take one bite of everything. (Christine always eats everything...) Andrew threw a huge fit, of course, but he eventually tried the steak ..and HE LIKED IT! Mr. "I will not eat it!" liked it! Then, we moved on to the rice, which, of course, he liked. Then, sweet potatoes.
He has a crush on Rachel Ray (weird, I know), and so I told him that she likes to make a tasty dessert called, "sweet potatoe pie"...who knows if she does, but it was worth saying, and he ate a bite!
So, we all had fun calling him Sam I am....we really tried to reinforce that his tongue is starting to like foods again...it's not that HE didnt like these foods, before cancer he ate everything...it's just that the chemo made his tongue not like stuff, but it's getting better.
Truthfully, he has been adding foods and then taking them off the list, they say it takes at least a year before things really taste normal again...but we are proud of the progress he is making, and proud of him for trying new foods.
Elise also added sweet potatoes to her food list. She really loves them. They were Andrew's favorite too, when he was a baby.
The kids are all doing well (except that Andrew's wacky rash has gotten really out of hand, and is all over his face....) but otherwise doing well.
Andrew had Opening Day this weekend, which included a fun carnival. I cant wait to get the pictures of him in his Blue Jay outfit.
We are so thankful that we get to enjoy all of these little events with our kids. We are grateful that God has done so much healing in Andrew's life.
We have several friends that need God's mercy and healing....a couple that just relapsed, and are now fighting on, against the odds, praying for a miracle. Please ask God to heal them. There is no reason why Andrew was healed and other friends werent. God doesnt love Andrew more....we didnt pray more.....but we do know that He hears us, He is compassionate, and we are asking for His miracles for our friends Jassmine (no website), Christian , Alexia , and Amy (email me if you want her website).
Please stop by and let them know you are praying. They are all very scared, holding on to every bit of hope. Tell them Andrew asked you to pray, and let them know you will.
Thanks,
Kim
Thursday, February 22, 2007 0:57 AM CST Gotta brag, gotta brag....
Im so thankful for the way that God has intervened in Andrew's life, and am even more excited when I see Andrew flourishing in ways we were told he probably wouldnt.
We are currently awaiting authorization for his neuropsych testing, where they can measure different areas of his brain and see if he is having any problems. We have always been told it's not if he has problems, but when (since it typically takes 5 or so years for the deterioration to appear.) We are also waiting to hear back re: authorization for an MRI of his brain, to check the abnormal areas and see if they are better/same/worse.
Before I get into how AMAZING Andrew is.....Ill point out his weak spots;
teacher says he is usually one of the last to finish his work, which could be because of his poor fine motor skills (nerve damage) or, first signs of processing delays.
His teacher also noted that his reading and spelling, while both above average, are not congruent. He misses whole parts of sounds when writing...could be a sign of cognitive damage.
As much as he loves jumping rope, probably not gonna win any awards.....or be voted "best athlete" any time soon (although, he is ahead of his peers when it comes to swimming....)
BUT WHO CARES, CAUSE GUESS WHAT MY BOY CAN DO?????
Today, while going through a drive thru, I posed a question (we are in the car, so, no pad and paper used to figure this out....)
Me: Andrew, if the total is $6.52, what money should I give the guy?
Andrew: A 5 dollar, a 1 dollar, a 50 cent piece and 2 pennies.
Me: (thinking that was pretty good, but wondering if he can go further....) What if I only have dollars, and I give him $7, what should he give me back?
Andrew: (very quickly....) 48 cents.
I did variations of this, and he always got it correct, and fast!!
Im also pleased to announce, that he finished Treasure Island this week. He has been reading a chapter a night to his dad, and is just doing fabulous.
While Im proud that he is such a smarty, I know that smart kids are a dime a dozen. What makes Andrew so special, is that he has had a tremendous amount of damaging chemicals and radiation administered to his brain. The radiation, the spinal chemo, and all the extra spinal chemos that we added.
We truly thought that he would never read, and now my Kindergartener just finished Treasure Island!!
Thank you God for all the protection and healing YOU have provided Andrew. Thank you all our prayer warriors for petitioning God on Andrew's behalf. Andrew is not a smart kid, he is a miracle and a testimony of God's mercy.
The bad news in all of this, is he may be a smart kid that ends up in jail.
It's getting a little out of hand, how often moms come up and proudly let me know that Andrew told their daughter he would marry them...take them to Disneyland, have kids, buy them a ring.....I usually just smile, I dont have the heart to tell them that he has promised to marry half the girls in his class, not to mention, Angelica, whom he married in an impromptu ceremony at the park over a year ago!
It does no good to be smart if your just gonna become a polygamist!
Have a great week.....Andrew's t-ball team, the BLUE JAYS, will have opening day this weekend, which includes a carnival. Both he and Christine are looking forward to it!!
Here are some recent pics to enjoy.....look at my little one move!!
 Taking a rest with her good friend, Dora.
 Bath time with big brother.
love,
Kim
Tuesday, February 20, 2007 0:13 AM CST I hope you all had a great Valentine's Day, filled with love.
Ours was fun. Christine and I baked cookies for hers and Andrew's class. Of course, they were accompanied by the cheesy, commercial valentines that you get in a box. Christine gave out Disney Princess and Andrew gave out Spider Man.
Ill be honest, (and selfish), and say that I was a tad bit disappointed in Valentine's Day this year.
Dont get me wrong, we had a great family dinner, everyone was happy, so much to be grateful for....and the kids had fun collecting their goodies from their classmates, having parties at school, etc.
However....one of the great perks about being a mom of young children, is raiding their goodies (I learned this from my own mom, who forced us to do the "community bowl" with our halloween candy each year...which was really just a way for her to eat all the candy corn and good candy bars, leaving us with 'dum dum suckers'....anyhoo....)
What is up with the state of Valentine's candy these days? Where is all the chocolate???
My kids brought home gummy this and gummy that, including a gummy "spongebob crabby patty".....lots of fruity, sweet-tarty kinds of stuff....which they LOVE (and I dont)....but I had to ravage their hand-made, construction-paper-heart-shaped-envelopes for chocolate, and found not to0 much :(
Note to self: buy lots of chocolate next year, you cant count on the kids stuff!!
We had a great week....Andrew took a line drive to his face in t-ball, but I think he was more shocked than hurt and handled it well. His team was very supportive and everyone came and patted him, which made him feel better.
Doug took the kids to see Tarabithia...they loved it. Andrew says it's a "must see" movie.
We also did a bit of cleaning...you'd never know, but we did. Well, you might know if you run over here before the kids wake up, as the play room is clean. But I say that within 12 minutes of their waking, the room will be covered in "little people", craft supplies, and plastic dinosaurs.
It's raining here. It was 80 degrees and perfect on Saturday...but it looks like we are going to have a bit more winter before spring.....
I hope you all keep warm, dry, and carry the love of Valentines Day with you for the rest of this week (and beyond.)
love,
kim
Tuesday, February 13, 2007 7:40 PM CST Happy Valentines Day Everyone!
I was so proud of Andrew yesterday at the doctors....
well, let me back up.
In the past, we have tried ALL methods of preparing him for painful procedures. We did the "honest" approach, although then he would get so worked up in anticipation that we moved to the "dont ask, dont tell" mode. It usually works, unless, of course, he asks you in advance, "what they are going to do?"..."will there be needles?" etc.
So, the other day, he asked, I told...of course, I reminded him of how brave he was last time he got labs from his arm. He cried a bit, but calmed down, and he wasnt obsessing about it, so I figured he was ok.
Then, yesterday morning at breakfast..."good morning Andrew"...(says me, the loving mom)....and he replies....
DID YOU KNOW YOU MADE ME HAVE A NIGHTMARE LAST NIGHT ABOUT GETTING A SHOT IN MY EYE!!??
So, as you can see, he was a bit worried.
When we got to the clinic, Christy, our Child Life Specialist (for those out of the loop...a child life specialist lives to make life in the hospital less traumatic for kids...) and our favorite and world's-most-painless-nurse, Charmaine (Andrew calls her 'Sharm') met with Andrew and asked him how he wanted this to go down.
Remember, this is his first "in the arm" lab at the Cancer Clinic...last month was at our local lab, and prior to that, he had a central catheter (port or broviac).
Andrew wanted to hold both of his sisters' hands. Elise on one side, Christine on the other. Christy was there with bubbles, which he blew throughout the process, to distract him...and Sharm did the ole Ill-hold-the-needle-up-against-your-skin-but-not-stick-it-in-until-you-count-to-three deal.
Andrew was sitting in place, but was crying. He let us all know he was upset when she put the tight rubber band on his upper arm and swabbed alcohol on the site....and then she placed the needle on his arm....and he counted........1........2.................................................................................................................
Sharm reminded him that while she would wait until he said 3, it would need to be said at some point, because her arm was getting tired.
A few reminders later, and he said it, THREE!
The needle went in, Andrew blew bubbles..........
and then he stopped, looked down at the needle in his arm, and was fine.
Sharm filled up two viles, and Andrew watched her. I told him I sure wished I had brought my camera, so that we could get a picture of him with the needle in his arm without tears....I said, "hey, pretend I have my camera and give me a smile"...he smiled while she drew his blood.
I was very proud of him, and hope that each time gets a bit easier for him.
We got his labs back today, and HOORAY....his blood work has crept into the normal ranges!!
Here is what the normal ranges are:
White Blood Cells (WBC): 5.1 - 10.1
Absolute Neutrophil Count (ANC): over 1500
Hemoglobin (HGB): 11.5-13.5
Hematocrit (HCT): 34-40
Platelets: 160 - 500
Andrew's was:
WBC 6.1
ANC 2040
HBG 13.1
HCT 42
Platelets 358
It is great to know that his system has kicked in and is working well, also that his hgb is back into normal range (as this provides him with oxygen and energy).
The best news of all, there are no cancer cells!!
Thank God, and thank all of you for praying!!
Have a wonderful Valentine's Day.
Love,
Kim
Sunday, February 11, 2007 10:32 AM CST Hi Everyone,
We have had a busy week, again. So much adventure and fun with the kids, someone is always keeping us on our toes.
Recently, Elise's personality has been emerging, and it is so wonderful to watch her. She is very tiny...at 6.5 months, she only weighs 12 pounds. But she is healthy and strong, scooting, crawling and inching her way all over the place. Sometimes, she gets on all foors, and throws her self forward with so much strength, that she rolls forward (stomach to chest to head! - like a 1980's style break dancer)....you might have to see it to get the idea.
When Andrew was little, he was so inquisitive, that you really couldnt hold him or cuddle him if he was awake. His eyes and body were always on the move, and he really did not want to be confined (the exception being when feeding...which he loved.) Andrew could pull himself up and get anywhere in the house, while holding on to things....he moved so fast, sometimes you would wonder, "how did he get over there?" but he always found a way, quickly.
Christine, well.....she was so calm, she never did pull herself up and get around. She could crawl early, but never had the desire to go anywhere. She much preferred to just be cuddled. Christine could stand when she was 12mos. and she was able to take a step, but really was happy to stay in one place. She didnt start walking around until 16 mos.
Im a little sensitive to Christine being "left out" and not getting as much attention as Andrew...due to his illness, as well as his personality. So, I try to go out of my way to make her feel special. Now that she is the middle child, Im even more aware.
So, when everyone says, "Elise looks exactly like Andrew!" (which she does)...I always feel for Christine, worried that she is not included. When people comment (much less frequently) that the baby looks like her, boy does she light up.
With that said....I try not to mention in front of Christine, that Elise's personality is so much like Andrew.
I thought the active vs. mellow was a boy/girl thing...but Elise is very busy....not wanting to be held too much when awake, she wants to get down and explore. She is very "talkative" screeching and laughing and babbling. We are excited to see her grow and blossom, I know each child has their own unique personality, and we love watching hers develop.
Besides her spunky personality, her first tooth emerged this week. Despite her tiny size, she is definitely growing and developing and bringing us so much fun.
Andrew is doing fine. Still has a bizarre skin rash, which we just try to ignore (since the only thing that relieves it is steroid cream, which is not good for him to use...)
Tomorrow he will go to the clinic for his monthly checkup and blood work (yes, that means needle in the arm again.) Please pray that he remains in remission. Appointments to check labs are always a little nerve wracking (did I spell that right??)....but now that he doesnt have chemo in his system, it is even more so.
Thanks for all of your prayers....
and, Karen, no..I am NOT a lover of reptiles, LOL.
Tuesday, February 6, 2007 12:30 AM CST Hi Everyone,
Busy week here....not sure why it was busy, just been one of those life's-moving-so-fast kind of weeks.
Christine is so excited to be 4, a big girl, and she enjoyed having cupcakes with her classmates at school. They also had her come up on stage at chapel and sang a special birthday song to her. Funny, so many times while Im driving or doing something at home, I hear her singing that birthday song to herself...she was very thrilled to FINALLY have her schoolmates sing it to her.
We also went out to dinner with Grandma J at the Rainforest Cafe. They had a snake that you could hold, and Christine really took to it, and enjoyed playing with it...I have some pictures Ill try to get them up ASAP.
Andrew started his second year of Little League, "SENIOR T-ball" He is on the BLUE JAYS, and has a great team. He knows many of the boys from past years of soccer or t-ball, as well as one from school....a really great group of kids (and parents)...so it should be a fun season.
I know many of you followed our friend, Gregory , with his very brave battle with lymphoma. He went to Heaven almost a year ago - still hard to believe. His mom, daddy Mike and sister moved up to Oregon this past weekend. I went over to say "good-bye"....and Abra shared how emotional it was to her to read about Andrew's first day of Kindergarten. We talked about that a bit, and I have been thinking about all that I get to enjoy with Andrew....big things like birthdays and the first day of t-ball.....and even little things like helping out in his class and hearing him sing worship songs at his school chapel. I am so keenly aware that each of these things is a special gift, and they are so precious to me. I am so thankful that I get to see him grow, and my heart is sad for those mom's (and dad's) that dont get to enjoy their children on earth anymore. I try not take life's day to day happenings for granted....I try to enjoy them to the fullest, as a way of thanking God for the healing He has given Andrew, and as a way of honoring our friends that are no longer here.
Thank you to all of you who have faithfully prayed for healing, we are so lucky to have Andrew with us today.
Please pray for our friends who are having a hard time.... Baby Donovan's family, as they move forward without their adorable Teddy Bear. Also, you may remember Princess Warrior Alexia . She and Donovan were buddies and neighbors in North Carolina, where they received transplants. Alexia was coming up to her "1 year post transplant" anniversary, and sadly (ok, WAY MORE THAN SAD) she has relapsed and is desperate for a miracle. These families would appreciate your support and love, as they walk through a very dark place in life.
Tonight....t-ball practice.....a treasured opportunity!
love,
Kim
Wednesday, January 31, 2007 0:22 AM CST Happy Birthday Sweet Christine!
I remember the day that you were born, and daddy and I couldnt believe how beautiful you were..
You have been such a joy, from the very start....wonderful (absolutely pain free) c-section delivery where everyone was happy and singing, you slept through the night from the very first day, and loved to snuggle.
Andrew's diagnosis came so soon in your life, and you were robbed of so much attention and love, being young in the midst of all the pain.
Admittedly, it was hard to juggle a baby with all of Andrew's overnight stays in the hospitals, but Daddy and I were always so thankful that you were in our life, you were the bright spot during many dark days. You were always happy, and always made everyone smile.
Even during some of Andrew's most tough times, he always wanted his baby sister, you always brought him happiness.....
You are still such close friends, and I dont know how any of us would have gotten through his journey of cancer without having you along for the ride....you are such a source of joy to our family.
Now as we watch you grow, into such a little lady....cell phone, lipstick and rhinestone glasses always tucked into your purse, which you gracefully carry as you clomp along in your high-heeled, princess shoes.....
and yes...we laugh at Christine too, she is a little clutzy....
Christine, you are kind, gentle, loving, smart, funny and such a blessing.
You are Andrew's perfect little sister, and now, you are the loving and doting big sister for Elise. She is so lucky to have you to show her the way...teaching her to be girly and sweet. I know you two will also have a special friendship that lasts a lifetime.
We have enjoyed watching you blossom these past 4 years, and are excited to see what God has for you. We are thankful today, as we are everyday, that Christine Marie Sprague came into our life....
We love you Beauty Bundles!!
Love,
Mommy, Daddy, Andrew and Elise
...and to anyone that wonders...yes, we all think it's quite funny that Andrew peed his pants....we try to laugh at the mishaps in life.....
Tuesday, January 30, 2007 12:49 AM CST Hi Everyone,
Sorry for the long delay in updates....we went out of town for the weekend, and well, what a weekend it was!
Ill start out by saying that I am working part time for counseling agency, and had the opportunity to work at a conference up in Northern California this past weekend. The only way I could go, was to bring the baby (since Im still nursing)...and, well, if the baby goes, Id need someone to watch her while I was working.
The kids love to stay in hotels, they dont really care where, I could get a cheap hotel in the middle of the slums and they would love it....so, I convinced Doug that this would be a great family vacation!! He wasnt so sure, but agreed to come along.
Since my employer was paying for my flight, room/board, etc. plus pay, it was worth it to go, even when considering paying the airfare for Doug and the kids.
We left early Friday morning and things seemed to be off to a good start, until Christine got sick. Vomitting, high fever.....Doug and the kids spent the day cramped up in the hotel room, and I knew that it would just be a matter of time until the whole family had the bug.
Luckily, Christine was feeling much better by Saturday, and they took the railway system to the Children's museum. There was also a putting green at the hotel, so they spent some time golfing later too.
Saturday night, Andrew started feeling sick, and by Sunday he was vomitting. I wondered how in the world we were going to do the plane trip back with Andrew feeling so sick. Shortly after take off, I looked over and Andrew was asleep (thank you Benadryl, every mom's best friend) and Doug was in the seat behind me with the girls, who were also quiet...WHEW! we made it!
As the plane started to descend for landing, Andrew woke up and began throwing up all over himself, the seats, etc. I was trying to put the barf bag in his face, but it just didnt work out. OK.....now to try to clean this all up....and wondering if I should take off his clothes, which are now covered in smelly vomit. We managed to clean up and gather our things when the plane landed.....apologized to the stewardess for the two seats that were wet and smelled......and made our way off the plane.
Poor Andrew....still vomitting, feeling horrible.....we get the luggage from baggage claim, and go to find the car.
It was like a bad episode of Seinfeld, as I couldnt find our car. I was pretty sure we had parked on the bottom of the structure....but our car was not there. There was an airport security employee standing around in his fancy red vest, dutifully keeping the parking structure safe.....and when I asked him, "Is this the bottom floor of this structure?" he replied with, "Im not really sure" Oh, crazy me, I would have thought he would be familiar with the structure, since it's his job to keep it secure.
"Do you know where the elevator is?" "I dont know" was his sharp response!
I mean, if there was a bad guy in the parking structure, how can this guy be of any good? He doesnt even know the floors or where the elevator is?
So, I left Doug, vomit boy and the girls and walked up and down the structure, and finally found the car upstairs.
On the ride home, Andrew not only threw up on himself, but peed his pants too, just for good measure.
The next morning, we thought he was feeling better, but he went to "tooter" (our word for fart), and, you guessed it, went diarrhea all over the place. Why not? It was sort of the "icing on the cake"....if you are going to have a vomitting/pee your pants episode, might as well go diarrhea too, right?
Christine is feeling fine, Andrew is too - although we kept him home today just to be safe and not spread this around. I, am feeling achey....but hoping that I get to miss out on the other parts of this virus.
Tomorrow Christine turns 4. She has grown into such a sweet girl. She got her progress report from school yesterday, and the teacher said she is a joy to have in class, kind to everyone and helpful to the teacher.
Please pray that this illness is all gone from this household by tomorrow, so that we can celebrate Christine's birthday in good health.
I hope you are all staying healthy!
love,
Kim
Wednesday, January 24, 2007 11:08 AM CST Hi Everyone,
Yesterday was another FIRST for Andrew (and since Im an avid scrapbooker, that means I have some pictures for you, both here and in the photo section)
We went down to our pediatricians office to get labs drawn...primarily the blood work to check the functioning of his endocrine system, hormones, etc. and his immune level function, along with his routine blood counts. Normally we get them done at CHOC, but since he needed to fast and have it done in the morning, and now that his port his out, it made since to do it at our local doctor's.
Since Andrew's port (catheter that goes to his heart) was removed recently, he now get's blood draws from his arm, like everyone else. It wasnt really his first time, when I first suspected that he had leukemia, I took him to the urgent care for a blood draw, and he sat there curiously, quietly watching as they put the needle in his arm and filled the vials. But fast forward 3.5 years, and tons of hideously painful treatment, and you would think you have a tough and stoic child, right?? Wrong!
I was just discussing (at the recent OCF cancer family party) with another mom, how the trauma is cumulative, and the kids get to a point where every little thing becomes magnified, with lots of tears. I guess they are finally able to express themselves, and maybe they are letting us know that they have had enough!
So, anyways,......I just want to give you some perspective.....below is a picture of a port needle, beside a regular needle.....I dont know if you can tell via picture on the internet, but the port needle is much thicker.
That was what they pushed into Andrew's chest on a regular basis (not just a slide under the skin, but straight into the chest with a good amount of pressure- to assure that it went into the catheter)...he never cried.
Guess what happens when you put the tiny needle just under the skin of his arm.....Yep, you guessed it, lots of sobbing.
Im thankful that Andrew held very still and didnt resist. Im sad though, to think that he has gone through so much...you can really see it in the picture that these tears represent more than just a blood draw - the kid has had enough.
Im hopeful that future blood draws will get easier.
Once we were done, he went off to school and had a great day.
*I* on the other hand, should have known that things wouldnt go quite that smoothly, and spent my afternoon haggling over insurance issues.
The lab technician called to say she coulndt process his blood, because they didnt have his insurance info. I reminded her (she knows Andrew very well, as during his first 1.5 years, we drew his labs at home off his broviac catheter, and hand delivered them to the lab...however, with the port, he always had it done at the oncologist....so, he doesnt go in there anymore, but he is covered.) (side note...as of 11-1 we are back to insurance that puts us with our old doctor, and not Kaiser.)...anyhoo....I asked her to please look up Christine and Elise on the computer, as they were in recently and had their insurance coverage confirmed in my presence...so I know it is on the computer.
Well, that would have been too easy. So, I spent 2 hours on the phone with insurance and health care people, fearful that his labs would get tossed. Because, why should a day go by where I dont have to deal with insurance??
I really thought my head was going to explode......the doctors insurance gal kept insisting he wasnt covered, so I had to make all the phone calls myself, and then call her back and walk her through the phone calls....very frustrating!
If anyone wants to send me a one-way ticket to somewhere peaceful and relaxing, Im now accepting donations!
Thankfully, by the end of the afternoon, we got things settled (we shall see when I call to get the lab results this afternoon....)
On a happier note, here is Andrew and some friends eating their creations (they got to make their own taco) during their field trip to Taco Bell the other day. They really had a great time.
I hope you all have a great end of the week.
Love,
Kim
PS. those fun pics were for you Christine...congrats on the new high speed internet access :))
Monday, January 22, 2007 11:16 AM PST Dear Friends,
I was so sad to learn that Baby D earned his angel wings last night. I know many of you have followed his journey and prayed for his family (which I know has meant a lot to them)...
That little cutie has been fighting his entire 2 years on this earth. Many may not know that his mom packed up and moved to the other end of the country to get him the best care...they have suffered so much financially, been separated as a family, on top of all the pain of watching their baby fight cancer....Melissa is an amazing mom, and it breaks my heart that Donovan's cancer couldnt be beaten.
Sometimes it must seem (especially for those that hop from CB page to CB page, reading about these heroic kids that fight so hard)..it must seem like God isnt hearing our prayers. It can be disheartening, and at times you think, "why does God allow this pain? why do kids get cancer? why do people suffer? why are there bad people and kidnappers and a world that seems to be filled with bad news? why doesnt God hear our prayers and take the evil away?" Whenever I wonder those things, it's like God Himself whispers in my ear and reminds me that He did look down at all of the hurt, and was grieved. He did decide to make it all better for us.....and as the Bible says, He has a place for us, a perfect place, where we will live forever, in His Kingdom.
So, while I still pray for mercy and goodness on this earth...for healing and comfort....I know the real prayer, as He taught us, is that "Thy Kingdom come"....that place where we will finally be free of all the bad in life....I am thankful that He is faithful to rescue us.
That doesnt take away the heart ache of losing cuties like Baby D, or living with the fear of cancer in your child....but it does give Hope, that He has heard our cry and He has made a way for us. He has a plan, a plan for good and not to hurt us.
Today we went to the OCF OCF (local cancer family group) carnival, which the elks put on ...and it was a blast for the kids. They played carnival games, and came away with BAGS of toys....toys like stuffed animals, blow up guitars, dolls, a gun that shoots a nerf ball.....while I loved seeing my kids happy, somehow, my mind quickly imagined a playroom floor (which is already covered in miscellaneous "parts" of toys...with tad bit of carpet visible through the stuff)...I imagined these New toys being sprinkled over the floor, adding to the already giant mess. The kids also got to pick a BIG toy...Andrew got a cool laptop (not a 'real' laptop,but a very nice educational one) and Christine got a "Marie Osmond" kewpie doll. Fast forward to the evening when Christine wanted to take the doll to the market, but only if she could bring an entire boat load of accessories (blanket, pillow for the doll, etc. etc.)...all this in her own princess shoes.....a major meltdown ensued when I wouldnt let her drag all this stuff with her (I just needed to run into the market!!!).....Im digressing.......
Anyhoo...kids had fun, sure wish I had a picture of my "messy marvin" of the family...Christine, who's poofy hair was doubled in size as it was covered in cotton candy....
tomorrow Andrew's class is taking a field trip to Taco Bell...I get to go as a chaperone, and cant wait!! (not because it's taco bell, but, just cause I like doing stuff with him.)
I know I usually end with prayer requests....and I do ask that you send a prayer for baby Donovan's family.....
But on a lighter note....I just finished watching the Apprentice, and wondered what you all thought....
Do you like the new format, with people living in tents?? Doug and I think it detracts from the "game"...let's just do tasks!!
Also, I was *very* excited about my own idea for tour bus theme....which I know would have just blown the other two away....
All passengers get a fun, beachy drink...the fruity kind with a strawberry.....as well as their choice of "knock off" designer sunglasses (so they can look and feel the part)...we would drive through Malibu, could point out the homes and hot spots of people currently in the tabloids...Mel Gibsons house as well as the bar where he went the night of his DUI, famous clubs where Paris and Nicole hob nob, JEnnifer Aniston's house...and we could dish about her, Brad and Angelina (could even talk a vote re: which 'team' people are on....personally, Im on Jen's side.....) wouldnt THAT be a fun tour??
What do ya think???
Have a great week....
love,
Kim
Thursday, January 18, 2007 11:08 PM CST Dear Friends,
Thanks for your prayers for Andrew's endocrine visit....usually Thursday afternoons at the clinic are "light" as it is the day when kids who are off treatment come back to visit the endocrinologist. However, today, the place was hopping, and it somehow felt like, "Bring-your-cousins-and-relatives-and-anyone-with-a-runny-nose-to-the-clinic-with-you" day (I can hear some of you going, "oh boy, I know those days!...yes, one of those days)
Anyhoo, I kept reminding myself that we really didnt care about germs anymore, since when we get fevers we can just stay at home and snuggle...but having just finished a few rounds of illnesses in Dec. I wasnt in the mood for any cooties. It didnt help that we arrived for our 1:30 visit, and didnt get seen until nearly 4pm (yeah, one of THOSE days)
So, now to our latest lesson "Endocrinology 220" for those of you taking notes for credits towards your medical degree.....
Andrew is 42 inches, so, still an inch below the chart. The good news is that he has grown 5.5 cm this year, which is average. So, while he has not "caught up" he has had a normal growth rate.
The endocrinologist explained that Andrew is not likely to have a "catch up" phase. We wouldnt expect to see that now. If all goes well, he will continue at the normal growth rate, which would keep him just under scale.
I asked if this "normal growth rate" that we have seen, means that the endocrine system is working. He said it is still a "wait and see" situation.
He said that Andrew will most likely have delayed puberty. That is the time when most boys have their big growth spurt....he said that if you think of a room heater in a small room, it does a nice job of keeping the room warm, and likewise, Andrew's hormones are currently keeping him growing at the normal rate. But when puberty hits, it's like taking the heater into a bigger room....that is when we will see if his hormones are able to kick in and give him a growth spurt (as well as all the other things that go along with puberty) or if his hormones will not be able to "keep the big room warm" and "peter out"
Does this make sense? It made sense when the doctor explained it, but now I feel like I am creating some confusing analogy....
Anyways, so, we wait, and in his late teens, we shall see if his hormonal system is working in full force (in which case he would grow and develop normally) or if it tuckers out and he needs assistance.....
On to the bone density issue (which, is less clear to me, so that might be confusing.....)
First, his dexa scan was done on a different type of machine than two years ago, which makes it hard (impossible) to compare. Glad we took that test.
It is very difficult to norm the tests for young kids, so, that makes much of the test worthless.
What we do know, is he has osteoperosis.
What to do....
Me: Should he take supplements or meds?
Doctor: They havent proven to be any more effective than 3 helpings of dairy a day.
Me: OKAY...Andrew is good at eating dairy (his favorite sandwhich for lunch is plain american cheese sandwiches...yuck!)
Me: What about activity, should we limit his activity? It's sort of a catch 22, as weight bearing exercise is what builds bones...so, what about:
gymnastics - yes!
riding a two wheeler - yes..with the safety gear....
skateboarding - no
a razor scooter - yes with gear
ok
Me: Do we worry about AVN (bone death)
Dr. - ask the oncologist
Basically.....he may get fractures, but the best thing for him is exercise, so do so, with safety in place.
All of Andrew's labs; cortisol, growth hormone, other things....came back normal....so we will do them again this week, and if they are still normal, we will go back next year and continue annual check-ups with the endocrinologist.
OK!
This doctor, by the way, does NOT deal with the "bone pain" or neuropathy issues.....so, those are being followed by the oncologist, and Andrew remains on pretty doses of pain meds each day for that issue.
I need to take him in for labs soon, to our local lab, now that he doesnt have a port. And, that leads us to another "situation"...now that he doesnt have a port, he will need the blood drawn from his arm.
When I first took Andrew to the urgent care, to find out about his bruises, he took a blood test and I was amazed at how my 2 year old sat and watched the needle go into his arm with interest. No tears, no fears.
Fast forward to the next night when the nurses spent a good 30 minutes or more attacking his arm like a rabid pin cushion, creating a fear of needles in his arm.
It will be interesting to see how we manage this next blood draw, in the arm, no port. Prayers would be much appreciated.
Thank you for keeping our friends in your prayers.... The Daily Family, who lost their son, Mark, in Iraq this week. And Donovan's family as they spend what may be their final earthly moments with the world's cutest teddy bear!
I am including my Christmas photo for this year....I never quite get it sent out to everyone....so I thought Id post it up and wish you all a wonderful 2007.
Christine, Elise and Andrew
Christmas 2006
Love,
Kim
Wednesday, January 17, 2007 8:48 PM CST **LATE WEDNESDAY NIGHT**
We were very sad to learn tonight, that Mark Daily, a family friend, lost his life while serving in Iraq. Please pray for his entire family, as he was a brave and caring young man, and certainly leaves a painful gap in many hearts.
Hi Everyone,
Andrew had a great return to school yesterday, after a week off due to surgery prep/and recovery. Tonight he will be taking (soon, currently running around in his spidey boxers.....) a shower, getting those steri-strips wet for the first time. It still looks like he has a port, the swelling, bruising, steri-strips and bits of dried blood are enough to make the area look "bulky"....but Im sure soon it will be a faint scar on a flat area...just the way God intended.
Andrew wanted to keep his port, just like he kept his tubies (in a bag in the "medical cupboard" of our kitchen...which is like a mini-pharmacy) Unfortunately they no longer allow patients to take home devices that once carried cancerous blood (yeah, that makes sense to me)...but Dr. Kabeer was nice enough to take a polaroid...one day Ill try to make it into a digital picture to show you all, it's kind of cool!
Tomorrow we go to the endocrinologist, Im interested to hear what he has to say about ways to increase Andrew's bone density. His osteoperosis is pretty severe, but I am hopeful that there is no permanent damage (some kids suffer avascular necrosis, or bone death, and need joint replacements).
We will also discuss his growth. At last measure, Andrew was 41 and 3/4 inches (last month).....the bottom of the scale for his age is 43 inches. He has been growing, so I am just praying that he will be at 43 and FINALLY be on the chart.
Andrew was never a giant, but he has always consistantly followed a curve between 25-50n the growth chart. A few months into treatment his growth completely stopped. It has picked up this past year, and now that he is off treatment we are praying that he sprouts. If he had never had treatment, he would be around 45 inches right now ...not that height matters, and not that we really care, but his growth is an exterior indicator of his pituitary functioning, which is often damaged during treatment. Sometimes temporarily, sometimes permanently. Those with permanent damage often have thyroid issues, abnormal puberty, and require growth hormone shots....So, to see him growing means a lot more than just stature.
Thanks for praying for these issues....I am continually amazed at how well Andrew has done on treatment, how our prayers for healing and protection were answered, and am hopeful that as he goes through life, all these other areas of "long term side effects" will also be healed, for God's glory.
This week, being Martin Luther King's Birthday, I thought I would explain the importance of the holiday to the kids. They know it's Martin Luther King's B-day, but dont know anything about him. So, Monday at dinner, we had the following conversation:
Me: Hey, It's MLK's birthday today.
Andrew: Yeah
Me: Do you know why he was such an important person?
Andrew and Christine: silent
Me: Do you know what he did that was really special?
Andrew: No
Me: Well, you know how your cousins (named their cousins who are part African-American) have brown skin?
Doug: (spitting out his food and choking as he shoots me a dirty look)
Andrew and Christine: (looking bewildered) No.
Me: yeah, you know how your skin is light beige, and there's is more dark?
Andrew: (now looking at me like Im crazy) No.
Me: Nevermind, but anyways, Martin Luther King told the world that God made us all the same and He loves us all the same.
later.....
Christine is talking about "That's so Raven" at the table.....so, I try again....
Me: Hey, you know how Raven has brown skin?
Christine: (again the look like Im a wacko) No.
Me: Nevermind, God doesnt notice either............
So much for my attempt at a civics lesson, but thankfully my kids dont seem to need it.
I hope you all have a great week.
Please keep our dear friend Baby Donovan and his family in your prayers. His time on earth is drawing short. His family has been through so much...the poor little cutie was born with leukemia and they have spent his whole life trying to save him....may their last days together on earth be very special.
Love,
Kim
Sunday, January 14, 2007 7:05 PM CST Hi Everyone,
Andrew is recovering really well. He is off the pain meds and has only slight soreness around the surgical sight. He still wont let me near the bandaids (in the midst of his emotional meltdown, he insisted that the nurse cover up his steristips with bandaids...she put 3 on there...even though he screamed for "hundreds of bandaids"....) He can get wet on Wednesday, so Im sure when he takes his shower they will come off on their own.
This week we will go to see the endocrinologist He is monitoring Andrew's endocrine functioning (thyroid, growth hormones, etc.) as well as his bone density issues.
Andrew has really sprouted up this year, in fact, as soon as I get him new clothes, he grows out of them!! HOnest, twice now, I have bought him new pants, and within 2 weeks they are major floods....he is now in size 4T, and he may sprout out of those soon too. This is a HUGE blessing!! Last school year, when he wore his little 24 months pants to school, we worried that he may need Growth Hormone shots (which are a giant pain, and have serious potential side effects - like cancer!) So to see him growing is a wonderful answer to prayer.
I am a bit discouraged about his bone density, but that's just because every little bit of what he has gone through hurts me as a mom. With his osteoperosis, it is really not wise to let him skateboard (his new interest - which he has been bugging me to let him do....either that or a razor scooter, which I also wont let him do with his bones in this condition.) I wish he had never had to deal with any of this....but truth be told, this is really a small issue, and one that should correct itself.
Considering that he has continually been on steroids since the last bone density (2 years ago), I expected this most recent test would show increased damage. So, its not a surprise at all. The good news, is that he is no longer taking these bone damaging meds.....and his bones should begin to rebuild with good nutrition, weight bearing exercise, and normal growth. I am sure the doctor will go over what we need to do to help Andrew in this area....there are some prescriptions that can help....Ill let you know what we find out.
Yesterday Christine enjoyed a birthday party at a friend's house. It is wonderful to watch her grow up and develop her own life. She was in Andrew's shadow for so long...many siblings of cancer kids have their own issues to deal with, and we are thankful that Christine has just gone along with things, and become such a sweet and loving girl.
Elise is getting around more and more. She is also reacting to faces and smiles. Andrew and Christine are wonderful to her, always giving her toys and making sure she is happy. Andrew is even holding her more and more, so careful with her. I am proud of how much my kids love each other.
Thanks for keeping Andrew in your prayers. Please pray for some of our friends that are going through difficult times.....Jasmine, who's leukemia has returned, and will restart more harsh chemo tomorrow (pray that she is able to achieve remission again, so that she can have a transplant)....and Baby D, who is still smiling, even though the leukemia is quickly overtaking his body......as well as Amy, who also has leukemia spreading throughout her body. Please remember to keep the parents in your prayers too....the helpless desperation of knowing that there is nothing else to be done for the cancer must be so overwhelming, may God cover them with mercy and support.
Love,
Kim
Thursday, January 11, 2007 6:55 PM CST And the award for The Most Dramatic Performance in the Pediatric Surgical Recovery Unit goes to............................................................................
ANDREW
Let me first say, that surgery went well, Andrew is doing great. Thank you for your prayers and support.
While "coming to" afterwards, he had a bit of a meltdown courtesy of the anesthesia that sometimes causes emotional responses.
He screamed at the top of his lungs for the 20 or so minutes we were there....
WHAT HAVE THEY DONE TO ME? WHAT IS THIS (looking in horror at the steristrips on his chest) THIS IS HURTING ME SOOOO MUCH, OOOWWWWWWWWW!
although the nurse assured me that he had plenty of local and general pain killers on board, he continued to scream and cry. I could tell that it was more of a mood issue brought on by the drugs in his system, rather than pain, because it wasnt "Andrew"
It didnt take long before Doug and I learned to just be quiet,
STOP TALKING, STOP LOOKING AT ME, YOU KEEP GETTING MAD AT ME!!
this was repeated often, even though Doug and I sat there quietly. The nurse asked if he was hallucinating....who knows....
HERE YOU CAN TAKE THIS, THAT IS WHAT YOU GET FOR TALKING TO ME...is what he yelled at me as he threw his dripping popsicle stick at my arm, while I sat there silently, afraid that any peep I made might insight more of his uncontrolled screaming.
When the nurse took out his IV (at his insistance) blood dripped everywhere, even after she put a bandaid with gauze over it, it gushed....( and then I braced myself)....
OH MY GOSH, I AM BLEEDING TO DEATH, THERE IS BLOOD EVERYWHERE, HELP ME, IM BLEEDING ALL OVER...
Doug and I went from being a tad humoured by the whole thing, to sad for how Andrew was feeling, to embarassed (as this recovery area was also being used by a number of other families, whose children were quiet or sleeping ...all of them had just had surgery too...so, we felt bad to be such a disruption.
Just when he would begin to settle down, while Doug and I sat quietly, a nurse would come in, and this only set off his aggitation and screaming.
It didnt take long before the nurses "let us know" that we could go....Ive never been allowed to leave a recovery area that soon after surgery, but the "ole heave ho" was understandable, as he was really upsetting other kids, I am sure.
Once in the car, he eventually calmed down.....and we stopped for a special treat at Chili's...as Andrew and I like to say, "Me love me some salsa" so we had some chips and salsa, and he devoured a "bacon cheeseburger" too.
He is feeling fine now, sore (and sore from the tumble he took at the clinic on Tuesday too)...but fine, and happy.
Before surgery, we met with the doctor, nurses, anesthesiologist.....also, our friend Sarah, who went through treatment for leukemia at CHOC With us...her mom is a nurse there, so she was kind enough to go back with Andrew. He was given the choice of versed (a med he gets with his spinals - a med he hates, because it makes him feel horrible) or a gas mask (which he also doesnt like)..he picked the lesser of two evils, the gas mask, but was upset about putting it on. Thanks to Wendy, Sarah's mom for going back with him, It's nice to know someone who you trust and know is with your child, when they go through something traumatic, and you cant be there yourself to hold their hand.
BTW, Our friend, Bailey (not the girl that lives near us, but another boy we know from CHOC) was in the bed next to us, sleeping, as he had a scan today to see if his cancer is still in remission. Please pray that they get back good results.
Also, our neighbor Cianna got her port put in today...tubes out, port in...what a coincidence that they both had a similar surgery on the same day (almost as much of a coincidence as having leukemia and living so close...hmmm.....)
Please pray for our friend Jasmine, her mom just called me to tell me that she has relapsed. She finished her leukemia treatment in August, and today they found out it is back. Pray that God guides and comforts them, healing Jasmine. Her mom is a single parent too, so as you can imagine, a lot of prayers are needed for her, during such a difficult time, with less support resources.
Thanks to everyone for praying....we continue to be grateful for how God has intervened in Andrew's life and for those of you that have faithfully been a part of that process.
Love,
Kim
PS. Karen...we prayed for you when you had your eye surgery, drop me an email and let me know how you are doing!!
Wednesday, January 10, 2007 7:01 PM CST Today has been "one of those days" in fact, I might be OFFICIALLY losing.my.mind!
I realize there may be a few of you out there that lead a very stress free life, and perhaps your reason for coming to this site is to get a taste how us pathetic people live (hope not, but could be true)...well, if any of you evere want to lose your mind, you know, just for the fun of it...here are some helpful hints you might want to try.....
WAYS TO LOSE YOUR MIND
1. Inject your children with "clutzoid juice" so that they can trip and fall and injure themselves at every turn. It will help put your family into the "most-times-going-to-doctors-hall-of-fame" which, as we know, is such an honor. For example.....if you take your son to the doctor for a pre-operative check up and lab work, it would be silly to leave without some sort of incident, wouldnt it? And I dont mean an incident like being so anxious about the thought of surgery and someone cutting you with a knife that you begin to kick and scratch and cuss at and hit your mom at the doctors office when she talks to the doctor about your surgery(yes, that happened!)....but the kind of incident, like, oh....after going over the dexa scan that indicates his bones have gotten much worse over the past year and he has full-blown osteoperosis....then, have him tumble and fall off the exam table, bruising up his entire right side from his arm pit to his hip bone, all along the rib cage....you know,now that you know he is at super high risk for fractures.........I promise, after such an day, you will feel like you are losing your mind.
2. If that example doesnt work for you, try this.......try having your insurance switched less than 2 months before you are to give birth, make sure it is a high risk pregnancy where you get shots twice a day, for good measure....and, have it coincide with your son being 3 years into treatment for cancer...cause, just one person having a major medical issue might not push you over the edge enough. Spend COUNTLESS hours with Kaiser, haggling over things...make sure they dont ever answer their phones, but have one of those special "routing" type answering systems, the kind where you are pushing buttons (and yelling, "big boy") for 20 minutes or more, before you get connected to a person that either speaks a completely different language, or is comotose and cant help you at all. Once you feel truly desperate, spend more chunks of your days getting stressed out by putting together a very detailed grievance with the Department of Managed Health Care. Put your all into it. Make it good. Remember, you are now about to give birth, and you are paying hundreds of dollars for medications so that your son can live....just for good measure. AND..this is important, make sure you f.i.n.a.l.l.y get someone who is on the ball and helps you...someone that holds your hand through the process, tells you that things are really in your favor....someone who allows you to breathe that sigh of relief....and then wait....wait for the agency to do the review...........all the while finally feeling some small sense that maybe your whole life wont fall apart......and then......find out that the girl handling your case has left that agency (kick to the head)....you will need to make 5 calls before you find this out (see above re: people that dont speak English, are comotose, or who just act like they are working for the CIA and refuse to give out ANY info).....then talk to a nice guy, who goes over your case for more than an hour....only to be told that they absolutely never got your multiple-page-grievance-complete-with-support-letters-from-all-of-andrew's-specialists-that-you-worked-so-hard-on-during-your-final-week-of-pregancy-when-you-were-in-excruciating-pain-and-couldnt-breathe. Make sure they LOST IT!
Do you feel your head spinning yet?? Do the calls from creditors help to intensify the experience for you??
If not, then just dont change your smoke alarm battery, and let it chirp like a cricket on crack for 5 days straight...and make sure it's the one in your bedroom so you make sure not to get any sleep.
And then....go enjoy your day :)
love,
Kim
PS. Andrew's surgery is first thing tomorrow morning....it's a rather simple procedure (although, while at the clinic, another mom "shared" how another child had just had that done but they knicked her artery or something so she is now up in the hospital......)...but really.....expected to be very easy, to go well.....we appreciate your prayers.
Tuesday, January 9, 2007 7:43 AM PST Hi Everyone,
Yesterday we went to have Andrew's consult with the surgeon. He explained to Andrew that they would be taking his port out....my little thinker said, "if you are taking the port out, where will the needle go?" (usually IV's are plugged into the port) So, he knows that he may have a needle in his arm (which for some reason bothers him more than a needle in the middle of his chest, go figure!) He also is a bit concerned about, "being cut open with a knife"...understandable....but I have reminded him that he has had this surgery 4 other times (3 broviacs and the placement of the port), not to mention, he has gone through FAR WORSE on the pain and torture scale, and has done well. Not sure what else to say, Im the mom that was terrified of the IVs I got for my c-sections (and, naturally, wigged out about the c-section itself, to the point of near hysterics)...so, totally hypocritical in trying to keep him calm about his surgery....but thankfully he is much braver than I.
Andrew's surgery will be Thursday morning...so we will go back to the clinic today for an exam and lab work, to make sure his counts are good and all is a "go".
After our consult yesterday, we went and visited some friends in the hospital. It was just Andrew, Elise and I (Christine stayed at school)...and our friend Amy just loves to hug Elise. Amy was diagnosed a couple of months after Andrew, and unfortunately, her leukemia keeps coming back. Currently it has spread so severely throughout her body that she has many tumors. They have her on very high doses of pain meds to keep her comfortable. I am thankful that when we went to see her, she was feeling ok. I am even more thankful that Elise was happy and playful...I know that brings such joy to Amy. Please continue to pray for Amy and her family.
We also got to see our friend Brendan We thought he had an appt. at the clinic, so were pleasantly surprised to find him in the hospital. He checked in yesterday and the treatment he receives this week will be his LAST!! He will be all done with chemo and join Andrew in Off Treatment land as a SURVIVOR!! We are so excited for him! Brendan is a nice kid (despite wearing pants with "flowers" aka clovers - he is a ND fan) He is a Lacrosse player, who was accepted to college on a lacrosse scholarship on the same day that he was diagnosed with cancer...how is that for crappy! Thankfully, he has done well with treatment, and now he can move forward with life....including the scholarship that was held for him. WAY TO GO BRENDAN, we are so proud of you!!
 Brendan and Andrew at an Alex's Lemonade Stand this past summer.
After visiting our friends (and our loving nurses and Dr. Torno....) we went to leave.....Elise was now hungry, so I decided to go into the new "prayer room" to feed her. As I sat down and got comfortable, I explained to Andrew that this room was a prayer room, a place for people to come and pray for their friends in the hospital. He decided that we should pray for our friends, so we did.
Andrew prayed for Amy. I prayed for Brendan. Then Andrew said, "we should pray for all the kids in the hospital"...so we did. We prayed for the nurses, the doctors....
As we prayed, I reflected on our journey at CHOC. It was coming full circle. One of the first things that happened on our journey, was surgery with Dr. Kabeer...and now, we were planning surgery with Dr. Kabeer again..only this time to remove the central line. We had come full circle.
As we had walked along the halls of the 3rd floor....Andrew was not tethered to an IV pole like the other kids. He wore a "visitors" badge...he was no longer, "Andrew; Cancer Patient" but "Andrew: Cancer Survivor" It was wonderful to return to that world as a visitor, to encourage our friends, to thank our nurses....to flaunt the fruits of Andrew's (and God's, and the doctors and nurses) labor in the face of the cancer that lurks on that floor. I pray that it gave hope to others to see that Andrew has made it.
At one point, we came upon a tour group...they had stopped to look at the big picture of the kids that was taken a few years ago at "Survivors Day"....Andrew was bald and on a feeding tube in that picture. It was such a blessing to be able to tell them that he was now here as a visitor, done with treatment, full head of hair, ability to run and play!
As Andrew and I prayed......as I reflected back to how far God has brought him, it seemed only right to say prayers of Thanksgiving for Andrew. As I thanked God for healing my boy, Andrew came and climbed onto my lap (as much as one can while I am feeding a baby) and hugged me so hard. We are so grateful for the healing God has done in his life, and for all the prayers that brought us to this place.
I asked Andrew about the times that he remembers most, what was the scariest, and reminded him of the hard times that he had overcome....and then told him that while surgery might sound scary now, it truly will be super easy for him, much easier than all the other things he has done in the past 3.5 years.
On our way home, we picked up dear Christine from school. Her teacher said, "Christine has been sharing how she got to sleep on the blue chair." (our oversized chair in the living room.) I smiled, not sure why Christine would share that...and then the teacher continued, and I started to laugh. Christine is CONVINCED (and the story grows by the day) that she was downstairs (now, apparently 'allowed' to sleep down there on the blue chair) when Santa came, and he woke her up, and she saw his boots going up the chimney!! LOL!! She recounted the story for her friends.....such an imagination!!
I hope you all have a great week.....I know you all will be praying for Andrew's surgery - which we so appreciate...please add a "thank you" to God for what He has done, as we come back full circle on this journey.
Love,
Kim
Sunday, January 7, 2007 9:37 PM CST Hi Everyone,
We had a busy week, with everyone now back to good health. Andrew stayed healthy, and had a fun return-to-school week, and since Christine's school doesnt start back up until tomorrow, we had some "girl time" together.
Now that our lives are settling into a routine again, I have decided to go back to work. Before Andrew was diagnosed, I was doing individual and family counseling, as well as some grief therapy groups. The intensity of Andrew's treatment made it impossible to work, so I stopped until he was comfortably in maintenance. Before getting pregnant with Elise, I went back to work for a short time, but then became pregnant....and decided it wasnt the right time. So...I think now is a good time, with the two big kids in school, and only my little crawler Elise to look after, this is a good time. I am looking forward to returning, ideally part time....I dont want to give up my time with Baby Elise, or with helping in Andrew's class, or doing special things with Christine...but part time would work well. Please keep my return in your prayers, that I find the right balance for our family.
Andrew couldnt wait to get back to school this week....there was a new girl joining his class (and he is all about the girls and finding the right one.) Currently he has a girl in class that he "loves" and he is excited that, "we are going to go to Stoneybrooke together, and then go to USC together" HA! I have him trained young! I've already let him know that he has to be a good student so that he can be a Trojan (and get scholarships!!!)
He also had a Pajama party in his class on Friday. The kids were all bundled up in their jammies (it was such a cold, windy day!) and they had pancakes, read "P" books, and did some pajama crafts.
Tomorrow, Andrew has an appointment with the surgeon about his upcoming port removal. I am hoping they can do it this week, so that we can move on to life without "fever watch"
Please pray for our friends having a hard time; especially Baby Donovan and Amy (Amy has a different kind of website that you cant directly link to...if you would like to leave her a word of encouragement, please email me for her info.)
I hope your New Year is off to a great start....
love,
Kim
Monday, January 1, 2007 9:35 PM CST HAPPY NEW YEAR!
We rang in the New Year with a *bang*....literally....
Being the nice mom that I am, I bought some of those "poppit" party favors, where you pull the string and confetti plops out the back, and of course some party hats and horns. We made some special treats, like home made chocolate chip cookies, potato skins, chicken tenders, and of course, cause Im a nice mom, we had some Martinelli's.
We were watching the ball start to drop from Times Square on TV, and we rushed outside for the final countdown, and to set off our poppers.
...and Andrew looked around and said, "Where is everyone else? Why are we the only ones?"
And I reminded him that I am a nice mom, and probably the other moms dont let their kids stay out late, they probably all had to go to bed. I *could* have made my kids go to bed at 8pm too....but was a nice mom, and let them stay up to ring in the New Year....
Of course, Im thankful that we live on the West Coast, and we could watch the ball drop on the East Coast...so I only had to let my kids stay up til 9pm....and since they dont know any better.....they thought the reason we were ringing in the New Year ALONE at 9pm, was because Im just the best mom....when really, everyone else was out in the street 3 hours later, while my kids were sleeping...I may not be the nicest mom, but I am *smart* ;)
So, once the kids were tucked away by 9:10....feeling smug that they got to stay up late.....I was able to relax for New Years.
Today, was more relaxing....everyone is feeling much better, still some congestion but no more fevers and definitely we are all on the mend.
We enjoyed watching the Penn State game (as Grandma and Grandpa from Georgia are both Penn State Alumns)...of course, *LOVED* watching our Trojans clobber Michigan....AND, fully enjoyed watching the Rose Parade.
Doug makes fun of me, because every year I oooh and aaah about the floats, and remark at the amazing feat of making everything with flowers (or seeds and other natural stuff.)
If you have never seen the Rose Parade in person, I highly recommend that you write it down on your list of things to do in life...as the floats are stunningly beautiful up close. For those who arent into parades (or fighting for a spot on a parade route)...you can view the floats the days after the parade, as they have them all at a park, so you can walk around and admire their beauty.
We are so thankful that the year ahead will be new and cancer free...we are looking forward to watching Andrew blossom and get stronger. We are so grateful to be at this place...as many times it seemed too far off in the distance and we wondered if we would make it.
We have friends now that are in the thick of things...like Michael, who is on the same treatment as Andrew....it feels good to tell his mom that he will not always feel so horrible, they will not always "live" in the hospital, and before you know it, Michael will have his hair back, put on some weight, and people will find it hard to believe he has cancer...but for now, he is weak and very sickly....hardly able to walk, and we pray with great faith that God will bring him through these tough parts.
We also pray for our friends that will undoubtedly always look at 2007 with much pain....as they likely will lose their children this year. Baby Donovan's Family is praying for more time, as they arent ready to say goodbye to their cutie yet...we are still praying for a miracle, that God will heal him, and also that He gives great strength and faith to his family, that they will be able to get through the days ahead making memories that they can cherish forever.
I would love to ride off into the future, forgetting all about cancer and what we have experienced...but I know that for many reasons that will not be possible....we will spend the rest of Andrew's life going to the cancer clinic for follow-up, and even though we are confident that God will keep Andrew safe, we will always be around the other children, including those not doing well....so we will always be reminded. What we have gone through is not easily forgotten, our outlook on life is different....
We will always want to find a cure...if not just due to Andrew's increased risk of cancer...but to honor those friends that have gone to Heaven too soon, and to help those that will certainly follow behind us.
It is interesting to consider what changes have been made since Andrew was diagnosed...to wonder if any of our efforts helped, did the lemonade stands, choc walks, Team in Training events help?? Are we closer to a cure??
There have been some important steps made....
When Andrew was diagnosed, they did not use "MRD" testing. Minimal Residual Disease testing is a way of looking at more cells to get a better idea of how they cancer is responding to treatment early on. This is now the best method for determining risk of relapse. This is now the best way to determine if kids should be on a high risk protocol or standard. Why is this important? Because the lifelong damage from treatment is horrific....many kids lose their battle from the treatment itself, not the cancer...the late effects that they will deal with as an adult are still unknown, but new studies show that it will greatly impace the quality of life. MRD testing will help stratisfy risk, so that some kids can forego high risk treatment, and all of it's side effects...it will allow kids to better get what they need without getting too much chemo.
Another major advance, is the progress in cytogenetic testing. Not only does it help to determine risk..and therefore give kids what they need without overdoing it....but they are finding the genetic markers that will soon help taylor treatment, so that instead of getting 15 chemos in full force, maybe they can determine the 1 or 2 chemos that will best work for that child, and not bombard them with so many different drugs.
There is still a long way to go....but right now, most kids are on experimental trials, where they literally give them almost every type of chemo known to man, in hopes that SOMETHING will work....
So, for that reason, we are still committed to helping to raise funds to find the answers...help kids get better, and thank God for bringing us to 2007, healthy and able to thank Him for the healing He has done.
May 2007 bring your family many blessings, and allow you to be closer with God than you were in 2006...more mindful of what is important in this life, putting aside those things that only slow you down.
love,
Kim
Sunday, December 31, 2006 0:56 AM CST Hi Everyone,
Sorry I havent updated sooner, but Ive been in a state of denial.....nothing serious, just that we all have major colds, and I somehow think that it will all go away if I dont admit it on this website.
Having a cold is no big deal, although, I feel sad for little Elise...she is on day 2 of a fever, and the runny nose was in full swing today...poor thing.
Really, the only "bad" part, is this fever-dodging-escapade. Christine had a fever Thursday, and I was very clear to her and Andrew that they needed to STAY AWAY From each other, otherwise he would get sick, and we would wind up in the hospital, blah blah blah.....You'd think we live in one of those lawn mower sheds or something and there wasnt any room for them to be more than a foot apart from each other, because any time I turned around, those two were either hugging or fighting...but having some form of contact....I thought I would lose my mind, it is very stressful trying to keep Andrew fever free.
Thankfully, Grandma J came to the rescue and took Andrew to her house Friday morning....which was a really good thing, because Elise came down with a fever Friday too.
There was a hefty price to pay, as Christine cried (and whined like a "coyote") for half the day straight, wanting to go to Grandma's house.....which, when you arent feeling well, can really get on your nerves.....but at least Andrew is out of here and SAFE!
Apparently he and Grandma are having a blast, and hitting all their favorite **Hot Spots**; Target, IHOP, etc......
Christine's fever was gone today, and I am just praying that Elise will turn the corner soon.
Im sure it seems as if we are the world's most unhealthy family....and maybe this is payback for usually being one of those people who doesnt get sick, and taking too much pride in that....because now it seems if it's not one thing it's another, either we have the cold or flu, or my husband is getting some bizarro thing that lands him in the hospital....and, oh yeah, there was the cancer.....
I dont believe in magic spells or special voodoo dolls (although Im about ready to give them a try for good measure....) Im just relying on God to give us a healthy New Year, and keep us out of the hospital in the mean time.
Speaking of prayers...please pray for Karly who needs extra prayers as she heads to NY for surgery, and for Baby Donovan, who still needs to get out of the hospital and celebrate Christmas with his family all together.... Baby Donovan
May you all have a wonderful New Year!!
Love,
Kim
Wednesday, December 27, 2006 7:17 PM CST Hi Everyone,
I hope you all had a great Christmas. The kids had a blast....Sunday we went to church twice....one time for regular service (where they had snow for the kids)..and then Christmas eve we had a lot of music and singing (which the kids always love.)
Andrew came into our room at about 2:30 to tell us that he heard Santa say, "HO HO HO MERRY CHRISTMAS!!" very loudly, and very clear, there was no mistaking. Well, like Im even gonna think about getting about at that awful hour...no way! So, I explained "the rule" about not going downstairs before the sun comes up.....that bought me some time. At some point, Christine wound up in our bed too, and for good measure, Elise didnt bother sleeping all night either.....
Grandma J was due to come over in the morning...so we all hung out in our bed, trying to wait for her to arrive....but she had an unusually slow morning, so we ended up going downstairs at about 7:30 to open gifts.
Both of the kids got the new leapster L-max.... Andrew has had a leapster for years, and it has been a fun, educational toy that he loves to take with him places...the car, the clinic, the hospital, ....but his stylist/pen was not working...he and Christine always fight over his leapster....so it seemed a good idea to get them each their own, and the new type can also plug in to be played on the TV screen....both kids love their new toys, Thank You to the Santa in Georgia!
Andrew asked Santa for some high-falootin watch that Martin Mystery has...it can do all kinds of high/tech/magical stuff. Santa went ahead and told him that yes, he does make that watch and yes, he would bring it for Andrew. GREAT! THANKS SANTA! No such watch exists......so, we got him a kids Timex, with an alarm and backlight....and thankfully he is happy with it.
So, everyone was happy.....we all had a great time playing with our stuff and eating goodies on Christmas.
Currently, we are dealing with a very weird rash all over Andrew. He has had it for about 3-4 weeks. He was seen at the clinic and they gave him such twice daily lotion...and said it was a fungal rash that came about because of his low immune system. He was seen about a week or so again, and I mentioned that the rash was getting worse (but the nurse practitioner thought it was looking better)...so......now, it is all over his arms, neck and torso and has really become more inflamed and itchy. So, we are going back to the doctor tomorrow to hopefully get a handle on it.
The soonest we could get in to see the surgeon is on Monday the 8th...for a "consult"....at that time they will make the appt. to have his port removed. The sooner the better, because as long as it is in, Andrew is at risk for bacterial infections and we always have to go to the hospital for a fever....once it's out, he can stay home with a fever like normal kids.
In the meantime, we all got over the flu without incident and are looking forward to a healthy new year.
love,
Kim
PS. Karen, Elise is a "two-finger" gal, although it usually takes her a while to settle in...she will frantically (sometimes crying) put her whole fist in her mouth, sometimes try to get both fists in, and eventually figures out her two-finger combo and gets comfortable. Doug and I are always saying, "find your fingers"...as she jams her fist into her mouth :)
Saturday, December 23, 2006 10:55 PM CST Hi Everyone,
We are all ready for a special Christmas. Tomorrow morning the church will have snow for the kids at the morning service...we will go to Christmas Eve service tomorrow night too. The kids are so excited for Christmas morning....Christine really gets it this year, and it just makes it so much fun to have her and Andrew filled with anticipation.
Yesterday's funeral for Alonzo was just a reminder of how blind cancer can be. It took such a special boy. He was intelligent, kind, hard working, and with a great sense of humor. I pray that his family finds some sense of joy this Christmas....it will be hard without him.
Alonzo was 17, and had two young brothers. When we went to his graveside yesterday, I noticed that his parents were seated under a small tree, a tree decorated for Christmas....there was an ornament that said, "Elijah" I looked down, and a grave had been decorated with Thomas the Train stuff....some of which was moved, to allow for Alonzo's site.....as it turns out, our friend Elijah (who passed away in February) is buried RIGHT NEXT TO ALONZO! The two families do not know each other....we met Elijah through the leukemia and lymphoma society (he and Andrew were "team heroes" together.) This past week would have been Elijah's 4th birthday (and congrats to his family, who just had Baby Noah this past week!) It seemed so special to me that God would have our two friends buried beside each other. I know they arent really "there"....but Alonzo was so kind to his own little brothers, to Andrew too....it seemed nice that he would be beside Elijah.
I came home yesterday, and later when Doug came home he told me the house down the street was on fire. Sure enough, a full blown, 6 fire engine fire. Please pray for our neighbors...they have two small kids...and thankfully everyone is fine....but their car was completely burned (it was in the garage)...the house is completely ruined.....
Fires, cancer, .....neither can steal the reason for the season....we still celebrate the joy of Christ, and are reminded that this life is temporary, but the gift of Jesus is eternal.
Merry Christmas!
love,
Kim
PS. Ill try to get pics of the kids in the snow tomorrow!! AND....yeah for me! finally got the Christmas Card sents (if Marina Gomez or Del Ross are reading...we need your address)
Thursday, December 21, 2006 10:08 AM PST Hi Everyone,
We are moving forward, enjoying Christmas, and THANKFUL that we get to recoup at home. Andrew has been brought in for his IV antibiotics in the mornings, and we give him more oral antibiotics at home...and it sure beats spending the holidays in the hospital.
Special prayers to our friends that are inpatient now....hurry home Brendan , and prayers for healing to Michael. Michael is a friend who is following the same treatment plan as Andrew, but is only in his 7th (?) month, has had a rough few weeks. He appears to have gone into septic shock, and twice his heart stopped for several minutes each time. It is truly a miracle that he is still with us, and he is now facing some loss of motor skills. Both boys have amazing strength and we pray that they stay strong during this hospital stay.
Tomorrow we will attend the funeral for Alonzo. It is only because of our faith, that the Christ that was born on Christmas was sent to save us, that we can attend Alonzo's service with a sense of hope....that he is in a better place, and we will see him again. It makes Christmas much more meaningful for me, and I pray for his family, that it eases their anguish of losing him to this horrible disease.
On the homefront, Elise is not only a talker, but a mover. She is already scooting around....here are a few pictures of her in action.....
There are also new pictures in the photo section.
Merry Christmas!
Love,
Kim
Tuesday, December 19, 2006 7:07 PM CST ***UPDATE***
After pushing some pedialyte pops and praying for Andrew's fever to break....I finally packed up our hospital bags and made the plans to go. Toiletries, clean underwear, comfie clothes......had to quickly wash my hair, cause once your in that place it's hard to get out and take a shower at home again. We made the trek......planning to stay at least until Friday.
On the way, listening to Christmas Carols in the car, I found myself singing along........"tidings of comfort and joy, comfort and joy"...and the words sunk in, probably for the first time. Comfort, I just want comfort. Is it too much to ask to have the comforts of home, with Andrew not feeling so hot....really, the LEAST comfortable place to be, is the hospital. (ok, maybe the cold winter streets.....) The bed is not comfy, especially with my big self squished in with Andrew on the extra-narrow twin. Yes there are oreos, but that's about it....the IV pole is noisy all through the night, and speaking of night, it's never dark, since the door and walls are clear plexi-glass, the industrial wattage from the lights in the hallway shine in on us....and then there are the constant flow of people in and out of the room....nurses, aides, and the custodial service....which, the custodial lady on the 3rd floor (Im sorry to say) is the noisiest person EVER. She is usually talking to someone in the hall (loudly in Spanish) as she barges in (btw, people dont knock at the hospital)....bangs into stuff, starts changing the trash can (even if it's empty) and the whole time still continuing her loud conversation ....it's like, "HELLO MY SON IS SLEEPING!!".....honest, if any of you CHOC lurkers are out there, you have to vouge for me on that cleaning lady!!
So, we go in, pity party in full swing.....and I very soon learn that one of our sweet receptionists at the clinic had died. She was a young, single mom, and it was very tragic to hear. Also, besides Alonzo, there were other children that went home to Heaven recently.....so of course, I felt bad for complaining....
What's one Christmas gone awry? who cares if people get their Christmas cards for Valentines Day?? Oreos arent all that bad......
but I am happy to say, that after a very stern lecture, we were able to go home!!
Our NP let me know that she was angry that I hadnt brought Andrew in right away. We have known children who were doing well, and their children went septic in a matter of a few hours and died. In fact, it was Christmas time 2 years (or was it 3??) ago, when a mother carried her daughter into the clinic, already dead.....she had not hurried to the clinic when her daughter had a fever. I know Mary is right, and even though we are pretty sure it is the flu, as she pointed out, we can never know for sure.
Im not sure if it was out of graciousness, or because the hospital was completely full.......but she let us go home. They drew blood cultures (to see if any bacteria is growing in his blood), and gave him some IV antibiotics before we left. We will need to return every day (not sure how many days??) to get more IV antibiotics....but at least we can go home and sleep in our own bed. HOpefully his fever will break, because if it continues or goes higher, or if the cultures are positive, we will probably end up in the hospital after all.
Actually, the policy to do the IV and cultures and then let people go home, coming back each day for more IV antibiotics, is standard practice for many hospitals...but our hospital is usually more cautious, and with the kids we have known lost to sepsis, I am glad they err on the side of safety.
But now, we are home....until tomorrow......
Thanks for your prayers,
Kim
Tuesday, December 19, 2006 10:34 AM PST
Well, I guess the hospital bug has been chasing us around, trying to ruin the Christmas Spirit, and he's at it again!!
I have been feeling much better, but this morning, Andrew woke up with a fever. I gave him some pedialyte pops, and I KNOW he is just coming down with the same thing...but because he still has his port (central line catheter) protocol dictates that we must be admitted to the hospital. Central line catheters can cause a blood infection to spread quickly, leading to sepsis and a high fatality rate....so even though it is a minute, remote chance....we always go in with a fever to be safe.
Today, I called to talk to the doctor, to try to reason with him to let us stay home....since Im sure Andrew has the flu, and it is much better for all of us to get better at home, and we certainly dont want to spread it around......but the secretary told me we had to come in. I told her we werent coming in!!
I left a message with the surgeon, since Andrew is supposed to have his port removed, to see if he can fit us into the schedule today or tomorrow to take it out...then we could go home. But I have a feeling they may not do surgery on someone with a fever.
Im so mad!! Christine has her class party tomorrow, and I was going to make Rudolph cupcakes.....Im finishing up Christmas gifts to mail out and Christmas cards.....there is the logistics of who will watch the kids, how will I nurse the baby, etc. etc. And it just stinks that this happens around Christmas.
So...chances are that we are going in......I dont think my stubborness will keep us out, because ultimately Andrew's health is primary.
Please pray that we get out soon and that the logistics work themselves out.
BTW, last night, we went to the Cancer Families (OCF-OCF) Christmas party...I was feeling much better, and didnt know that Andrew was coming down with anything...so felt safe to go. I hope we didnt contaminate anyone!! The kids saw the REALEST Santa I have ever seen.....they just love hanging out with that guy!
Please say a prayer for the family of Alonzo, as he went to Heaven on Saturday. When you meet kids with cancer, it's easy to think you can tell who will make it and who wont.....some kids do so well, some struggle, some are weak, some are fighters....some have a better prognosis.....but what I have learned from all of this, is that you never know. I always thought Alonzo would make it. All the time we spent together in the hospital, I just assumed he would beat it, I never looked at him as one of the kids that might not be able to win. I am sad for his mom, as she fought hard, took him to get cutting edge treatment out of state when the cancer returned...she is a nurse herself, and she did everything a good mom would do. Alonzo has two little brothers, who will obviously have a hard time with his absence. Please pray that the Holy Spirit is an extra comfort to them this Christmas, and as they continue this life without Alonzo.
love,
Kim
Tuesday, December 19, 2006 7:07 PM CST ***UPDATE***
After pushing some pedialyte pops and praying for Andrew's fever to break....I finally packed up our hospital bags and made the plans to go. Toiletries, clean underwear, comfie clothes......had to quickly wash my hair, cause once your in that place it's hard to get out and take a shower at home again. We made the trek......planning to stay at least until Friday.
On the way, listening to Christmas Carols in the car, I found myself singing along........"tidings of comfort and joy, comfort and joy"...and the words sunk in, probably for the first time. Comfort, I just want comfort. Is it too much to ask to have the comforts of home, with Andrew not feeling so hot....really, the LEAST comfortable place to be, is the hospital. (ok, maybe the cold winter streets.....) The bed is not comfy, especially with my big self squished in with Andrew on the extra-narrow twin. Yes there are oreos, but that's about it....the IV pole is noisy all through the night, and speaking of night, it's never dark, since the door and walls are clear plexi-glass, the industrial wattage from the lights in the hallway shine in on us....and then there are the constant flow of people in and out of the room....nurses, aides, and the custodial service....which, the custodial lady on the 3rd floor (Im sorry to say) is the noisiest person EVER. She is usually talking to someone in the hall (loudly in Spanish) as she barges in (btw, people dont know at the hospital)....bangs into stuff, starts changing the trash can (even if it's empty) and the whole time still continuing her loud conversation ....it's like, "HELLO MY SON IS SLEEPING!!".....honest, if any of you CHOC lurkers are out there, you have to vouge for me on that cleaning lady!!
So, we go in, pity party in full swing.....and I very soon learn that one of our sweet receptionists at the clinic had died. She was a young, single mom, and it was very tragic to hear. Also, besides Alonzo, there were other children that went home to Heaven recently.....so of course, I felt bad for complaining....
What's one Christmas gone awry? who cares if people get their Christmas cards for Valentines Day?? Oreos arent all that bad......
but I am happy to say, that after a very stern lecture, we were able to go home!!
Our NP let me know that she was angry that I hadnt brought Andrew in right away. We have known children who were doing well, and their children went septic in a matter of a few hours and died. In fact, it was Christmas time 2 years (or was it 3??) ago, when a mother carried her daughter into the clinic, already dead.....she had not hurried to the clinic when her daughter had a fever. I know Mary is right, and even though we are pretty sure it is the flu, as she pointed out, we can never know for sure.
Im not sure if it was out of graciousness, or because the hospital was completely full.......but she let us go home. They drew blood cultures (to see if any bacteria is growing in his blood), and gave him some IV antibiotics before we left. We will need to return every day (not sure how many days??) to get more IV antibiotics....but at least we can go home and sleep in our own bed. HOpefully his fever will break, because if it continues or goes higher, or if the cultures are positive, we will probably end up in the hospital after all.
Actually, the policy to do the IV and cultures and then let people go home, coming back each day for more IV antibiotics, is standard practice for many hospitals...but our hospital is usually more cautious, and with the kids we have known lost to sepsis, I am glad they err on the side of safety.
But now, we are home....until tomorrow......
Thanks for your prayers,
Kim
Tuesday, December 19, 2006 10:34 AM PST Well, I guess the hospital bug has been chasing us around, trying to ruin the Christmas Spirit, and he's at it again!!
I have been feeling much better, but this morning, Andrew woke up with a fever. I gave him some pedialyte pops, and I KNOW he is just coming down with the same thing...but because he still has his port (central line catheter) protocol dictates that we must be admitted to the hospital. Central line catheters can cause a blood infection to spread quickly, leading to sepsis and a high fatality rate....so even though it is a minute, remote chance....we always go in with a fever to be safe.
Today, I called to talk to the doctor, to try to reason with him to let us stay home....since Im sure Andrew has the flu, and it is much better for all of us to get better at home, and we certainly dont want to spread it around......but the secretary told me we had to come in. I told her we werent coming in!!
I left a message with the surgeon, since Andrew is supposed to have his port removed, to see if he can fit us into the schedule today or tomorrow to take it out...then we could go home. But I have a feeling they may not do surgery on someone with a fever.
Im so mad!! Christine has her class party tomorrow, and I was going to make Rudolph cupcakes.....Im finishing up Christmas gifts to mail out and Christmas cards.....there is the logistics of who will watch the kids, how will I nurse the baby, etc. etc. And it just stinks that this happens around Christmas.
So...chances are that we are going in......I dont think my stubborness will keep us out, because ultimately Andrew's health is primary.
Please pray that we get out soon and that the logistics work themselves out.
BTW, last night, we went to the Cancer Families (OCF-OCF) Christmas party...I was feeling much better, and didnt know that Andrew was coming down with anything...so felt safe to go. I hope we didnt contaminate anyone!! The kids saw the REALEST Santa I have ever seen.....they just love hanging out with that guy!
Please say a prayer for the family of Alonzo, as he went to Heaven on Saturday. When you meet kids with cancer, it's easy to think you can tell who will make it and who wont.....some kids do so well, some struggle, some are weak, some are fighters....some have a better prognosis.....but what I have learned from all of this, is that you never know. I always thought Alonzo would make it. All the time we spent together in the hospital, I just assumed he would beat it, I never looked at him as one of the kids that might not be able to win. I am sad for his mom, as she fought hard, took him to get cutting edge treatment out of state when the cancer returned...she is a nurse herself, and she did everything a good mom would do. Alonzo has two little brothers, who will obviously have a hard time with his absence. Please pray that the Holy Spirit is an extra comfort to them this Christmas, and as they continue this life without Alonzo.
love,
Kim
Sunday, December 17, 2006 11:40 PM CST Holiday Tidings to all our friends.....
Dare I mention, that I have the darn flu...hopefully it will be short and sweet....It's more annoying than anything, as we had a lot of holiday events today...I also hate worrying about passing it on to the kids. Andrew still has his port (central line catheter) which means if he gets a fever we must go inpatient at the hospital for a couple of days...not where I want to spend Christmas.
While I stayed home to rest, Doug, Andrew and Christine had a fun day. After church they went to a play, Andrew's friend is one of the performers. He and Christine enjoyed the show. After coming home and napping, they went to a Christmas party given by a friend. SANTA was there, and he passed out gifts to the kids (brought wrapped by the parents)....Andrew got the "build it yourself remote control" that he has been longing for........Christine has been wanting a "long purse that you can put over your neck" (rather than the handled type)...which she got from Santa ...AND it had a butterfly on it (she is in the "butterfly" class at preschool, AND it had a butterfly shaped compact with about 30 lip gloss colors (Santa and Grandma J think a lot alike - but mommy fears lip gloss in her hair, and perhaps colored on the carpet or walls!!) The kids (and I) were amazed at how *perfect* the gifts were, and they both remarked how Santa sits up with God and knows everything about us!
Our community hosts a Menorah lighting each year, and we always look forward to attending. I remember the first time I saw the large Menorah on the "Town Green" some years ago, and it reminded me of the promises that God keeps for His people, the prayers that He answers, the protection that He provides. It's such a great reminder and I love seeing the fixture in our community each year. The lighting took place tonight, and due to our busy schedule (and my flu) we werent able to attend.
While Doug was out with the kids, I watched "60 minutes", and they had an interesting segment on Holocaust Survivors. It was very interesting, as they were discussing meticulous documents, kept by the Germans, regarding the detained Holocaust prisoners. Those records are being released for the first time to the public, including Holocaust Survivors.
The journalist sat with 3 men, all imprisoned as young teens during the Holocaust, one at a time, while they reviewed their records for the first time. They saw their signatures where they had "signed in" to the various camps where they were kept. One man was shown a "transport list"....everyone on the list was taken to a different facility, and killed. For some reason, the mans name was marked off, he had a line through his name, he never was transferred. He didnt know he was ever planned for transfer, and he doesnt know why they would have removed his name, he only knows, now, that he was lucky.
I couldnt help, as I watched the segment, filled with horror at what these men survived, to parallel it to the life we have lived in the "cancer world."
I realize that children battling cancer and Jews (and Christians and others) being exterminated are two different situations, both horrible....and I dont mean and disrespect to compare them...as to say one is better or worse...they are both awful. But as I sat watching the show, the same feeling came to me...a feeling that you can almost see, almost smell. The dark, evil sense that lingers..it most certainly filled the air of the concentration camps, and I know that same spirit from the oncology floor.
Even at CHOC, where they go out of their way to make the floor seem bright and cheerful....full of toys, activities, visits from Disney characters and professional athletes...the spirit of death still lurks. It is more noticeable on the days when someone is preparing to go to Heaven...the days when family, friends and chaplains gather in and out of a room...the days that people walk the floor quietly, with red, tearful eyes, because another one has just lost their battle....sometimes, it felt like we were living in a cheap hotel, and other times, it felt more like a funeral home.
Even the bodies of the victims have similarities. On the 60 minutes segment, they showed photos of the prisoners. Thin, boney bodies, shaved heads, sunken-in eyes......The pain, the suffering....all very similar.
And as the 3 men shared their stories, something else was familiar....the fear of not knowing....you were all marked for death, and their was no telling who would die or when. There was not formula for figuring out which prisoners would die, and it's that way with kids....a relapse sneaks up on you, and things go quickly. We have lost too many friends, friends we thought were doing well.
As we celebrate Christ's birth, I am thankful that He came to this world, that He came to save us.
God did not plan the Holocaust, He did not plan childhood cancer...both are symptoms of a fallen world, a rebelious world, but He does have a plan, a plan for good and not evil....but it wont be in this world. I am thankful that He made a plan to save us from this fallen world...Im glad He sent Jesus to be our Savior.
Nothing on this earth can separate us from the Love of God...not cancer, not my darned flu, not the Holocaust...not anything that happens here on earth.
This Christmas, I am more thankful than ever for the birth of Jesus and enjoy celebrating the Hope that only He can give.
Andrew is out of school for Christmas break...Christine has one more week. Tomorrow is her Christmas Program at school (in the morning) and I am so looking forward to hearing the little voices sing Happy Birthday to Jesus. In the evening, we are going to the OCF-OCF (cancer families) Christmas party. I sure hope I am feeling up to going, as I am looking forward to seeing our friends.
Love,
Kim
Friday, December 15, 2006 9:44 PM CST Hi Everyone,
First, Happy Chanukah to everyone. As Christians, we also celebrate the victory that God gave the Jews, and the miracle of the oil. We are thankful for a God that loves and protects His people, and hears their prayers.
Thank you for your prayers for Doug, it was comforting to know that people were praying for him during this ordeal.
We just returned home from the hospital tonight, after spending two full days in the hospital, running every kind of test....
They wanted to rule out seizure, heart attack, pressing from the "corn" brain tumor thingy......and all looked fine.
In fact, the doctor said the MRI didnt see a tumor at all! This was a large, very clearly visible, quarter sized "corn" (as Andrew calls it) in the frontal region....so, at this point, we are thanking God for removing the tumor all together....(and Doug will follow up to double check, at which point we will praise God even more.)
The "official" guestimation of what occured, is that Doug was exhausted, bent over, and cut off oxygen to his brain, and passed out. That is the doctors belief...and Doug and I think it might be true....with one additional element.....
The night before, we went to see Christmas lights in our neighborhood, and went to 2 houses that have a really cool "light show" where the music is rigged up and the lights blink to the songs. Very cool to watch!!
HOWEVER, Doug and I both came away with major headaches, and joked that it might cause *ME* to have a seizure (I have an old head injury that gives me seizures - that present more like migraines, light auras, etc.) 3 days later, and I still have some residual effects from the light show, and I think it could have contributed to Doug's episode too.
The doctors all eschewed my theory (of course)...but I did look it up on the internet, and blinking lights CAN cause seizures...so, who knows.
All that really matters, is that we were in a situation with several scenarios, many of them *not so great* and the outcome was that he just tipped his head wrong :) Cant ask for better than that!!
Now...to resume our Christmas festivities.....
Thankfully, I am one of those weirdos that Christmas shops all year long, so I dont really have stuff to buy. I DO like to get my Christmas cards out near Thanksgiving, and that hasnt happened yet, so my big project will to get them out before New Years!
On a side note, In the mail today, I had 14 bills from CHOC....usually we get a few a day (no lie!! they have a wacky billing system.) Today's bills for Andrew were nearly $100,000..... the piling up of bills adds a lot of stress (which also could be a source of Doug's passing out!!!) Please pray that we are able to resolve these medical issues without going into a tail spin. The most important thing is Andrew's good health and follow up care, but it's hard to ignore the massive insurance issues....
Andrew and Christine are with Grandma J tonight......we are just going to have a restful night, and look forward to the continued celebration of Jesus's birthday season.
love,
kim
Thursday, December 14, 2006 11:27 PM CST Hi Everyone,
Well, I have been trying my best to relax and enjoy the Season...and with Andrew done with treatment, I thought it would be the perfect time to relax and thank God for the gift of Jesus and all that He has done to hear our prayers.
I think Doug had a different idea, something like, "Hey, it's too quiet around here, I should create some sort of medical emergency!"
Actually, while Doug is a very drama-free kinda guy, he did manage to stir things up today. He passed out for about an hour in his car this morning, and he has spent the day at the hospital, where the doctors are trying to figure out what happened. We have been there all day, I just got home...thanks to Dominique for watching the girls this morning, and to Grandma J for keeping them all afternoon and night. Doug will most likely be there at least through Saturday, depending on the outcome of the tests.
As I write, he is having an MRI and a CAT Scan. Some of you may remember that last year they found a brain tumor (benign) and there is some concern that it may be growing and pressing on some things, and caused him to pass out. They are also ruling out other possible causes. Please pray it is nothing major, and nothing that will cause him to lose his drivers license (like a seizure).
My prayer is that this will also give Doug some time to rest. He has been working very loooong days (and nights), travelling quite a bit, and he really would benefit from a bit of R and R.
The kids are sort of worried, they miss their dad, and while the hospital is sort of our 2nd home, they also are used to people in the hospital being very sick, and it hurts their hearts to think daddy might be sick. Pray that God comforts them and that the spirit of Christmas isnt dampened for them.
Im starting to think that "this is life".....but am confident that God is guarding and watching our family, and that even in the midst of these trials, He provides many, many blessings.
Ill update soon when I know more....
Thanks for your prayers!
love,
Kim
Tuesday, December 12, 2006 9:37 AM CST TUESDAY EVENING UPDATE - I just got Andrew's lab results and he is slowly moving into the normal range of things :) Everything looks fine! Thanks for your prayers.
We will get the bone density results in January, when we meet with the endocrinologist.
love,
Kim
Hi Everyone,
Happy Christmas Season, and Channakuh Season too!
This past weekend, Doug's family came out for a visit. The kids were very excited to see their "Grandma and Grandpa from Georgia" and "Aunt Jenny" too. I should have known by their frenetic anticipation, that their behavior was preparing to go *off the charts*. Yes, that's right, my dear little children managed to pull out all the stops, and display the WORST behavior I have ever seen from them....all lumped into one weekend. I'd love to convince Doug's family that my kids really are nice, kind, pleasant...however, since they acted like spoiled, naughty brats the entire time...well....until the next visit.
We had fun eating at Ruby's on the Pier (great waves, and one of the fisherman caught a ray while we watched.) The kids also enjoyed locking everyone into the van while we drove around and looked at lights. LOTS of nativities on display this year, and a few of the coveted "Santa Stop Here" signs.
Yesterday, Andrew had a few appointments; A bone density scan....this will be reviewed next month when he sees the endocrinologist. It will tell us if his bone loss has improved or gotten worse. I am expecting that it is the same or worse, as the main culprit is the high dose steroids, which Andrew was on througout treatment. We are praying that it hasnt done permanent damage, but that his bones can begin to rebuild (weight bearing exercise) now that he is off treatment.
We also went to the clinic for a check up and labs. I should get his blood results back today. He has looked a little pale to Doug and I, so we are anxious to get back his results so that we can breathe a sigh of relief.
Andrew also went to the "Chinese Doctor" and had acupuncture and also had some herbs (?) burned on him. I dont know how all of that works...except our doctors say it does, and well, at this point, since he is loaded up on heavy meds each day for his pain, Im willing to try anything.
I wanted to Thank God for giving good results to our friend Christian He had a bone marrow transplant a few months ago, and some of his preliminary tests came back questionable. His latest results were good and we are praying that God continues the healing process in Christian. He has a long road to go, against some difficult circumstances, and we want to thank God for what He has done as we ask Him to heal Christian completely.
Also, Baby Donovan just celebrated his 2nd birthday. It is so sad, that with the way things are looking, it may be his last....unless God intervenes with a miracle! Please pray for this little cutie to be healed, his family loves him too much to say good-bye.
Im hoping to have pictures from this past weekend.....will put some up if I do....
Enjoy the Season!
Love,
Kim
Thursday, December 7, 2006 10:00 PM Hi Everyone,
We are into full-on Christmas mode. The kids are at the *perfect* age, and by that I mean they are excited about Santa, but also become well behaved when you remind them that HE IS WATCHING!!
Recently, Elise was dedicated at church....here is a picture of her with our pastor. Isnt she a doll? (and doesnt she look earily like a clone of Andrew and Christine????)
Here is another picture, all snuggled up in her swing. This is one of the first times that she sucked on her fingers, before figuring out the fingers, she sucked on her whole fist, LOL!
This weekend is daddy's birthday, he will be the big THREE-NINE! "Grandpa and Grandma from Georgia" along with Aunt Jenny will be coming out for the weekend. It has been a long time since they have seen the kids, and they will be meeting Elise for the first time. The kids are very excited, and we are looking forward to spending time with them.
May you all enjoy the holiday season........
love,
Kim
Tuesday, December 5, 2006 7:02 PM CST Hi Everyone,
I hope you are enjoying the Christmas holidays (for our Jewish friends, we hope you are getting in the Channakuh spirit.)
We had Andrew's classmates over for a Christmas party, and the kids had a great time going carolling in the neighborhood. I hope to have some pictures soon to post.
Andrew has been doing well. To be honest, he has looked a little pale, but we go in next week for labs. Please pray that he is in continued remission.
Yesterday Andrew went to a "Chinese medicine doctor"...I was surprised to meet the caucasion doctor ...expected a Chinese lady, LOL. Our oncologist referred us to her, and she has been successful at helping many of the cancer kids with their neuropathy and pain issues. We still dont know if Andrew's pain will get better with time...for some it does, and for some the damage is permanent..another area where we would appreciate prayers.
You may remember our insurance fiasco..which is still in limbo. We did get new insurance in November. After much scrambling, Doug was able to get on a plan that covered CHOC. Unfortunately, the gal at the cancer clinic told us that as of December 1st, that carrier is no longer contracted with the hospital! UGH! In the 5 months that Andrew was not covered at CHOC, the bills are well over $100,000. We are doing what we can to get better coverage...but it isnt easy, as the only way to get insurance for Andrew is through employer/group policies....with his cancer history, he will never be covered by a personal policy (for the rest of his life)...so, I guess we better get used to learning how to play the insurance system.
Our family has been enjoying Christmas, going on our drives through the neighborhood looking at the lights. We have been pleasantly surprised to see a lot more nativities this year. The kids' favorite this season seems to be the "Santa stop here" stop signs that people have placed in their yards. Today, Christine and I went to the craft store to see if we could make one for our yard. I couldnt find an octagon shaped piece of wood, so I bought some other materials and we are making a "happy birthday Jesus" sign instead. I assured the kids that Santa would not want to miss Jesus' birthday party, and will of course stop at the houses that have the "happy birthday Jesus" signs.
Later in the day, I had gone to the bathroom, and when I came out, Christine said, "A neighbor man just came and took your cell phone." WHAT?? she repeated herself....this sounded ridiculous. I would have heard someone come in, and I was only in the bathroom for 2.5 minutes.....
I noticed she was holding her favorite pink purse. The following conversation took place:
Mom: Can I see your purse?
Christine: (hesitatingly handing over her purse) OK, but dont look in the zipper part.
Mom: (silently thanking her for telling me where to find my phone, I unzip the zipper part and pull out my phone). Hmmm, I guess the neighbor man didnt take it.
Christine: I told you not to look in there.
Mom: Christine, we dont lie or steal. Santa isnt going to bring presents to little girls that lie and steal.
Christine: (with her hands on her hips) yes he will, he will see the sign!!
If you watched Super Nanny last night.....Jo obviously hasnt met Christine, or she would surely change her mind about putting soap in a child's sassy mouth.
Speaking of mouths, and Christmas.....Ali , her mom and sister are making adorable plates....the ones that you leave out with cookies for Santa...as a fundraiser to support Baby Donovan's family. Please consider stopping by and purchasing the cute custom plates...they make great gifts too! Ali and her family are shipping them out within days, so you will definitely have them well before Christmas.
And please pray for Baby Donovan and his family. Cancer has a way of turning your world upside down, and this dear family has had to leave their home, their support system, their job...in order to try and save their son's life. And now, after 2 years of battling, they have been told their isnt much more that can be done, Donovan's cancer is too aggressive.
It is easy to get caught up in the hustle and bustle of life, especially during the holidays, but please consider spending time to pray, leave a message, support this family....as they face one of life's most painful situations.
Also, please pray for Christian , our friend from Andrew's school. Tomorrow he will have another bone marrow aspirate to see if all the cancer is gone. The results are very important and we are praying that God will show them His mercy in healing Christian.
Dont forget our friend Alonzo. I havent heard from them since they left for France. I am praying that God has healed Alonzo, that the trip was comfortable, and that Alonzo and his family feel the presence of God through this difficult time.
Love,
Kim
Friday, December 1, 2006 11:52 PM Hi Everyone,
Busy week here. Doug has been travelling a ton, so it has been overwhelming for me to keep up with things...and it didnt help that yesterday was one of those days where I was tempted to put the kids up for adoption (not Elise, she hasnt learned how to be naughty yet....) Thankfully, Doug is now home, and the kids had a better day today.
This week was Andrew's "I am Special" week at school.....
I finished his "bravery beads" and he brought them to share with his class. It is amazing to look at all he has gone through, all lined up on a string, Im still soaking in all that has happened, all that he has endured, and how much God did for us during the past 3+ years.
The kids are allowed to bring a snack to share....Andrew wanted me to bring "cheese fries with bacon from Islands, with no green things (chives)" which is just what I did...not all the kids liked them, but he was in cheese Heaven (and since he still had steroids in his blood earlier this week, I bet they tasted especially good.)
His teacher presented him with a "character trait" award. The kids learn Biblical character traits each year, and they also are awarded for a trait their teacher sees in them each year....Andrew's teacher gave him the award for Faith, and she commented on how she has been inspired by Andrew's faith in God, and how he prays to Jesus when he is going through tough times. I cant think of a trait that would make me more proud...he is such an amazing kid, and has come through all of this with so much strength, maturity, and yes, a very deep faith for his young age. (it's these proud moments that make me glad I dont actually give him away when he acts naughty.)
...in case anyone wants to know what my kids do when they are in a naughty mood...what types of things actually drive me to drop them off at the corner.....
* I thought I would be a "nice mom" and buy Christine her favorite treat, Raisins (yeah, I know, my kids are weird, I have them convinced that raisins are a dessert...unlike their mom who "eats" Ben and Jerry's for dinner...by the way, I was supposed to be on Dr. Phil yesterday, but the segment with me was edited out.....) anyhoo, back to me sweet Christine. No sooner do I put the groceries away and leave the room, she opens the raisins and eats 6 boxes. Later, when I find empty boxes strewn about the house, and raisins smooshed into my carpet, I confront her, "Christine, did you eat some raisins?" NO (andrew never lies, even when he knows he will be in trouble...christine on the other hand, tells me bold face lies quite often.....as if I cant see the raisin boxes!!)
Now, you might be saying, "so what if she eats raisins...." Well, there is a BIG problem with Christine eating too many raisins, and it happened this afternoon, in the form of her pooping her pants!! She gets diarrhea from the raisins, and cant get to the bathroom in time (since she waits til the last minute....) Sooooo, as if I dont have enough to do, Im cleaning up a poopy mess from my almost 4 year old daughter!!
Andrew's naughty behavior is less covert...he simply does whatever he wants, and doesnt care if you tell him otherwise. I think the reason he never lies, is because he really doesnt care if he gets in trouble. There is no punishment that matters to him...so he doesnt mind fessing up to sneaking cupcakes or breaking my candle snuffer. He pretty much is a grown man in a little kid body, a nice man, a bright and likable man...but please dont try to tell him what to do, because the kid does what he wants.
so, Im worn out....thank goodness Doug came home tonight and can give me a break from time to time.
Andrew's class has a Christmas party this weekend.....something fun to look forward to :)
We have our lights up..the kids picked red/white "for rudolph"
Oh..one funny thing they have been doing lately, is talking about their dreams. But Andrew has Christine convinced that she is in his dreams. He will tell her about his dreams and say, "remember Christine, when I gave you the glass of Orange juice? (or whatever)" and she just says, "oh yeah" So, now, they busily talk about what they did together in their dreams....and I think they both believe it!! strange......
Enjoy the beginnings of the Christmas season....
Love,
Kim
Tuesday, November 28, 2006 7:10 PM CST Hi Everyone,
We are still here :)
It has been a busy, chaotic week....with Andrew moving forward as our strong, brave survivor.
Some have asked what this means......what does Andrew do now? Is there any more treatment?
Andrew will be followed closely, getting blood tests every month, for the first year....every other month the second year...and gradually move toward annual check-ups.
Due to the late side effects (I nice way of saying that the chemo has the potential to cause life-long damage that sometimes shows up down the road), combined with his increased risk for secondary cancers (the treatment that saved him has side effects of causing other cancers)...he will need to be closely monitored for the rest of his life.
He is still seen for growth, endocrine and thyroid issues, including his bone issues. So we will visit the endocrinologist every 6 months for these concerns.
Still seen for neuropathy (pain and limited use in extremities), and we are soon going to see the orthopaedic doctor re: this.
Still seen by the psychologist who will do neuropsych testing each year, to monitor for cognitive damage.
Still seen by the cardiologist, to monitor for heart damage from one of his chemos.
Still followed by the opthamologist, to monitor for cataracts and nerve damage from the radiation.
Of course, the oncologists will monitor him for relapse or secondary cancers.
Some have asked us about relapsing.....
Andrew has had chemo killing off his cells for over 3 years...daily chemo, massive chemo....
Now, we wait and see if it did it's job. The first year is the riskiest for relapse, and then with each year it gets less and less of a chance....
We appreciate your prayers for all of these areas.
As we are so thankful to have our vibrant, bright and loving boy with us today, we are sad for the friends that never made it to this point...they should have, they deserved a full life, their parents deserved to watch them grow up...too many to name them all....so many angels in Heaven that we miss.
Also, please pray for friends that are having tough times...
Baby Donovan who has relapsed again, and they are now looking to make him comfortable as they dont have much hope left. As long as he has breath, there is hope....please let them know you are praying! He and his family have fought long and hard, and have made so many sacrifices, it seems cruel to not have a different ending!
Christian a junior higher from Andrew's school. He had a bone marrow transplant a few months ago, and recent tests show that he still has some cancer....please pray that tests in the next week show that God has healed him!!
Our dear friend, Alonzo. I believe they are in France now....the trip was expected to be very hard on him, as he is in severe pain...but he wants to be healed! Please ask God to send him comfort and healing!!
Also, our friend Ali is selling some really cute Christmas plates...with proceeds going to help some of our friends in need...stop by her website and check out the plate, adorable and inexpensive gift idea!!
The weather here (cold and windy) has brought on a lot of allergies...please pray that the stuffy noses clear, so that Andrew's doesnt turn into a sinus infection...he still has a low immune system (it will take about a year to build back up)...and he still has his port, making him susceptible to septic shock...so we want to stear clear of any infections.
Thanks and have a great week,
love,
Kim
Friday, November 24, 2006 10:23pm and in the famous last words of Jesus,
"It is finished!"
Ok, I realize that might be sacrilegious, but that has what has been going through my mind this past week...this long, heartbreaking, painful, yet blessed journey, is finally finished.
We celebrated by spending the evening at the Spectrum...and outdoor shopping mall with a giant ferris (scarest) wheel, a special dinner, a trip to the book store...
Earlier in the day, my sister and her family visited from Denver. It was great to see my kids with their cousins, and we all wished our visits were more often (that Kelly and her family would move here!!)
Just a few minutes ago, Andrew took his last chemo.....
Here are some other "lasts" that he has celebrated recently....
His last visit to the clinic as a "kid with cancer" ..now he will go as a "survivor" Here he is celebrating with the clinic nurses:
His last bone marrow aspirate, this is after with his dear nurse Charmaine cleaning him up. This is the point where I come in and he looks up and says, "you have four eyes!"
Notice the two bandages; the large one on his upper rear, is a special "pressure bandage" that goes over the rather large hole where they went into his hip bone from the back side. This was the bone marrow aspirate. Further up on his spine, is the regular band-aid, from the spinal tap. You can see he still has a syringe hooked up to his port IV....
Tonight, when we took Andrew out for a special dinner, I asked the waiter if they could sing "happy birthday" when they brought him his ice cream. I explained to Andrew that it wasnt his real birthday, but it is the day that he will be born as a cancer survivor and not have cancer anymore. He smiled and said,
"It's a celebration for you too mom, like a "thank you" for taking me to the hospital so many times."
What a special kid, to realize that he isnt the only one that has gone through this, but to know that we are all celebrating tonight!
Many have asked, "Now what?" and soon I will report on the future...but for now, we are finished with this part of the journey, and are thankful to God for all of you that have helped carry us this far.
Love,
Kim
Thursday, November 23rd 2006, 10:35 pm It's Thanksgiving, and our family has so much for which to be thankful. First and foremost, we thank God for the healing He has done in Andrew. It was God that called the cancer back when the leukemia was aggressively increasing, it was God that kept His hands on Andrew - comforting him when he was tired, vomitting, in pain and miserable, it was God that protected Andrew's brain from the damaging radiation and chemo...Thank You God!!
Tomorrow, Andrew will take his last chemotherapy pill. He is getting excited, as we have been telling him that he should (slowly but surely) feel better, breathe deeper, have more energy, experience less pain, and his foods will taste normal again. They say it takes about a year for these things to come back fully....and there is some uncertainty about some side effects.....but all in all, Andrew should feel much better.
I have gone through his records, in my tedious project of putting together his bravery beads....Im not quite done, but here are some things I have learned:
What Andrew has done! -
Taken 6,420 pills
(now, this is based on prescribed meds, it was hard to know just how much zofran he has taken...and there have been times when he took extra antibiotics or pain meds....and the first month was taken in liquid form before he learned to swallow pills, but I do believe this number is pretty acurate, in spite of those things.)
14 visits to the Emergency Room
52 pokes in his port (thank God he had the broviac the first 18 months, it truly saved him from hundreds of pokes)
2 pokes in the arm (although the initial one was actually lots of pokes over 30 minutes)
11 Peg shots in the leg (really 22 as they do 2 at a time)
26 spinal taps
14 bone marrow aspirates
4 surgeries (with one to go when they take out his port)
8 days of radiation
100 overnights in the hospital
literally too many to count days in the clinic/hospital for chemo
too many x-rays/MRIs/CAT scans to count
2 scopes (one from each end)
3 EKGs
3 Echocardiagrams
1 kidney test
1 bladder test
22 blood transfusions (thank you blood donors!!)
And millions of prayers!!
Thank you for helping Andrew, helping us, get through this....tomorrow we celebrate!!
Love,
Kim
Tuesday, November 21, 2006 6:57 PM CST Hi Everyone,
We had a *fun* day, sort of. We met with some of Andrew's classmates to have lunch and go to the movies. Silly me, I thought Andrew might be THANKFUL to go to Islands, but I guess Islands isnt good for anything if you arent having cheese fries -as I found out from the GRAND STEROID RAGE ATTACK that he had at the restaurant. And....come to think of it, the movies arent worth seeing if you cant have MILK DUDS, and now, everyone that saw the 12:00 showing of "Happy Feet" at the Kaleidescope Cinema knows that, thanks to SEVERAL major meltdowns, which were played out up and down the aisles of the theater.
You may ask (like most people have through Andrew's course of treatment...which may have only added fuel to the fires...) why not just give the kid cheese fries and milk duds, he is on steroids, after all, and doesnt have much control over his emotions.
Well, we only had a short time for lunch before the movie was to start...and for Andrew, cheese fries is a long, drawn out ordeal...where every single one is eaten with a meticulous fervor (parents of kids on steroids know what I mean about the way they eat their food, it's an obsession) AND he doesnt like to share (we were with 7 other kids). As for the milk duds, I didnt realize he wanted them, until I had already waited 20 minutes in line to pay $7 for 2 bottle of water...to buy the milk duds would mean to miss the movie.
So much for trying to lavish my child with a social event.
Speaking of social events....when we last left off in the recap of Andrew's cancer battle, he was getting stronger by the day, adding weight (up to 31 pounds) and ready to finish his 15 months of intensive treatment.
He began "maintenance" in November of 2004, which meant he could rejoin the world.
During the intensive phase, he wasnt allowed to be around other people, because his immune system was so low, and the slightest virus or illness could land him in the hospital for a long time (and cause him to miss much needed chemo.) Prior to being diagnosed with leukemia, Andrew was in a play group, attended park days with friends, went on frequent outtings with playmates,and suddenly that all stopped. He now spent time at home on the couch, watching tv, or sleeping. His only social time was at the hospital, with his friends with cancer.
His isolation also meant isolation for our family. We couldnt go to church (unless Doug or I went alone, which we did at times, but it felt rather akward). We couldnt attend family gatherings for holidays. I couldnt even go to the store until Doug was home in the evening, because I couldnt bring the kids. So, typical of my days, I would go to the clinic with Andrew in the morning, on the way home think of what I would cook for dinner, and then realize that I was missing an ingredient or two....and opt for a drive thru.
So, when Andrew began maintenance, it was really a wonderful time for the whole family, we felt like a butterfly, finally metamorphisized (SP?) from her cacoon. It was a wonderful time!!
For Andrew, it meant that he could begin preschool. Now, Im not a huge proponent of putting young kids into preschool, I think they do just as well, if not better to be with their moms with lots of social opportunities...but Andrew had just spent so much time without friends, and many cancer survivors develop social anxieties from their experience, so it was important to immerse him back into a life with kids his own age.
Andrew had a great time at school....he looked forward to going each day. He did still have his broviac (two IV lines that came out of his chest) but he was very mature about playing in ways that were safe and being responsible with his tubes. Here is a picture of Andrew on his first day of preschool (Nov, 2004, he had just turned 4):
Now, if you are going to be social, what's one important rule??? anyone??? how about, make sure you dont smell like you havent taken a shower in 18 months??? Wouldnt that be a good start???
In January, Andrew had surgery to remove his broviac, and replace it with a port-a-cath. They are both essentially the same thing, a central line catheter that goes directly to your heart, for the administration of chemotherapy. The difference, is that the broviac is two external lines, and the port is under the skin. The broviac can not get wet, due to risk of infection (there is an open hole in the chest.) To get wet, would mean using lots of adhesives to close up the area, and as logic would have it, the removal of said adhesives. Andrew's tender skin would tear with the use of adhesives, even the expensive duoderm that we used, so we decided to just avoid baths and showers. He was too young to take them without getting wet, and at the time, an infection going straight to the heart was worse than sticking to a "baby wipe" wipe-down.
A week after his port surgery, he was able to take a bath again...this is my kid that loved to swim, and he really was thrilled to be back in the water. We also put him into swim lessons, and were thrilled that he didnt miss a beat and impressed the teachers with his dolphin like skills :)
While Im at it with the pictures from his re-entry into the world...it was around Thanksgiving of 2004 that we were able to meet "in person" Kendrie and her family. We had "met" via our online support group for kids with leukemia...and they came out from Georgia to vacation in California for the week. They were kind enough to invite us to Sea World with them, and here is a picture of Andrew with Kendrie.
The amazing thing about his picture, is that today, nearly 1 year off treatment and doing well, Kendrie looks like Jessica Simpson (or Farrah Fawcett for the Boomers crowd)....she has long beautiful hair! I highly recommend going and checking out Kendrie's Page , not only to see her pretty hair, but also to read her mom's journal. Thankfully she still posts updates on how the family is doing (dad is now battling cancer!!) but unlike most Caringbride sites that break your heart, Kendrie's mom Kristie is able to infuse your heart with laughter....this is one site that wont leave you saying, "why do I do this to myself!"
Thank you for being part of our countdown...it's kind of like New Years Eve, 10:30pm for us.....and sort of the opposite of 1999 when everyone feared the Y2K debaucle. This year, we are expecting that the new years ahead will bring exciting, new, wonderful change!
If nothing else, Ill never have to experience roid rage again (especially not in public!!)
Have a fantastic Thanksgiving!!
Love,
Kim
Monday, November 20, 2006 12:48 AM CST Hi Everyone,
I hope you had a great weekend. We enjoyed Andrew's last soccer game of the season, and had some good family time together.
Andrew's roid rage has been very intense...we are so thankful that we get to say "good-bye" to those nasty meds.
Today is a special day, as it is Doug and I's 7th anniversary. I am sad that his boss called just yesterday to send him on another trip, so he is travelling and not here to spend it with me, but I am thankful that we have survived this long, and look forward to many years ahead.
When I think back over our marriage....it has been filled with excitement right from the get go! I became pregnant with Andrew within a couple of months, and was also finishing graduate school at that time. In 7 years we have:
*had 3 children
*had 2 miscarriages
*gone through the diagnosis, treatment and now completion of Andrew's treatment
*purchased 2 homes (moved 3 times)
We have endured a lot of stress, I wonder if our shark diving on our honeymoon was forshadowing our lives together, ha! If I had to go through these things, Im glad Doug was there beside me, he is a wonderful dad, very supportive and a great man of God.
Now here we are, with 3 amazing, bright and beautiful kids....ready to begin the next 7 years, which we pray are much more calm.
Happy Anniversary Honey!
As I continue with Andrew's journey.....we last left off in the summer of 2004, when he was very weak, but gaining strength with his feeding tube. By Fall, he was much stronger. He was getting physical therapy at that time, and was really making strides. He was not able to walk up and down our staircase when summer began, and by Fall, he could do so, with assistance. Here are pictures of Andrew in his final month of intensive treatment:
This picture was at his 4th birthday. It was scheduled to be outdoors, since his lowered immune system prohibited him from being indoors with other kids, but it rained that day, and we had to move it indoors. Im glad we didnt cancel this day, he had so much fun being a normal kid.
This was Andrew's first CHOC Walk, as the year before he was too sick to attend. This year "Andrew's Team" raised over $40,000 and now there is a brick in front of CHOC recognizing his team. Thanks to everyone who was part of this effort.
So much to tell about this picture. It was our 2004 Christmas Card picture, taken in the only 3 hours that it wasnt storming for the entire week. It was absolutely freezing, and later in the photo shoot, the kids fell in the water!! It looks good though, and Andrew is starting to look like a healthy kid.
These pictures mark Andrew's 15th month on intensive chemo. Most kids with Acute Lymphoblastic Leukemia have 6-10 months of intensive treatment before maintenance. Due to Andrew's high risk protocol, added chemo, radiation and some bumps in the road along the way, it took 15 months.
The next part of his journey is Long Term Maintenance...still on chemo every day, but not as intense. STay tuned, as the next pictures will show Andrew's "re-entry" into normal life, with no more isolation.
Love,
Kim
PS. Andrew just informed me that he would like to make a world record. Ok, I asked, what would you like to do...he said he wants to break the world record for NOT TALKING!! I had to hold in my laughter, I told him that I didnt think that was his strong suit, but it would be *fun* (ie, calming after the roid rage weekend, that's for sure) to give it a try. So, I told him that the record (which I couldnt find online...does anyone know what it is??) I told him it was probably a few years or so. He seemed to think he could do it, sooooo I gave him the "ready, set, go"...I give him 3.2 minutes! HA!
PPS. He lasted 38 minutes. REally, much longer than I expected! After several tries at his home-made sign language didnt work, he decided he didnt want to try for the record.
Saturday, November 18, 2006 10:07 AM CST Hi Everyone,
Yesterday at Andrew's school, the Kindergartners did an adorable Thanksgiving Feast program. They were dressed up as darling Indians and sang really cute little songs. Their teacher used sign language in some of the songs (which I love) and the kids just looked too cute for words!
As an extra treat, 2 kids came forward and read a paragraph about Thanksgiving - and one of them was my little guy! He is such an amazing reader...amazing because we worried that he may never learn to read (because of radiation) and because he really learned to read by himself! One day, he just started reading everything....long words, non-phonetic words....it is so wonderful to hear him read!! I am just so proud of him, and thankful to God!
Afterwards, the kids all sat down for a Thanksgiving Feast.....and the less-than-proud moments began. Andrew is on steroids this week, and why should our last dose of steroids be anything but horrible?? He has been extremely angry and emotional,, pushing every possible button that I have. Anyways...so at his school feast, while the principal is praying, Andrew is getting upset and obsessing about his apple juice, "Can I have this apple juice or NOT?!!" over an over....despite my having said he could have it (I normally dont allow him to have juice). Then....even though the teacher said they didnt have to eat the Thanksgiving food they were served...(which lots of kids dont care for)...it was Andrew who had a meltdown over it....to the point that they brought him some pizza (the hotlunch people still brought hot lunches, despite the feast, and Andrew lucked out!) Now, I realize that his chemo makes his food taste yucky (thus he only likes bland stuff)...and his steroids give him strong cravings...and nothing else will do....but it is trying on my nerves when he goes into his angry-tantrums. I am really glad this will be the last steroid-induced week of rage. (now we can just have regular kid tantrums)
Continuing on with his treatment journey.....Andrew was a real trooper with his radiation. The next phase of treatment was extremely hard for him.
This first picture was taken at Easter, about a month after his radiation. It was about this time that his body started struggling through treatment, although you'd never know by his smile:
He is so proud of the "easter egg" cake he helped decorate.
The next couple of months he needed a lot of blood, was vomitting quite a bit, developed anorexia, and became so weak he couldnt walk. I dont have any pictures of his toughest two months...much of those two months we were in the hospital, as the chemo was too much for him to handle. Knowing that many of the kids that die dont really die from the cancer, but from the damage of the cancer treatment, we feared that his body was shutting down, we feared that we were losing him. He would sleep 23 hours a day, and was in awful pain. We did a lot of tests; bladder, kidney, he was scoped from both ends, trying to find the source of all his pain. It was during this time,, that his body was getting thinner, frailer, and despite putting him on tpn (fatty lipids via IV) and an appetite stimulant, he dwindled down to 22 pounds. It was a very scary time for us. It was hard to spend so much time in isolation - as he wasnt allowed to be around people - so much time in the hospital surrounded by sick children.
Finally, (and I say finally, because we should have done it sooner) at the end of May, Andrew had a feeding tube placed in his nose. We would hook him up to a pump each night, feeding him "kinder-cal" (like ensure), through the tube. I remember when we came back up to his room after having it placed, and it was making him cough and gag, I said, "Im so sorry that you have to have that." and he looked at me, so much braver than a 3 year old should ever be, and said, "mom, Im ok."
It seemed to me to be like a miracle...he immediately started to gain weight and perk up....I remember in the hospital, when he finally sat up, talked and seemed to get his old personality back....the feeding tube made such a huge difference.
The feeding tube was placed just before Doug's first Team in Training ride in Tahoe. We didnt think we would be able to go up and cheer him on, since Andrew had been so frail, but buoyed by the effectiveness of the feeding tube, we went up and here is the picture where Doug and Andrew crossed the finish line together:
It seems crazy now, but I remember thinking that Andrew looked SO HEALTHY in that picture...because the weeks before he looked even more frail and sick. In this picture, he had gained 6 pounds, back up to 28 lbs. 6 lbs looks like a lot on a 22 pound kid!
Here are pictures taken a month or two later, at an Angels game with the Leukemia and Lymphoma Society. He was still very weak and sick, but he really had improved from the months prior, and he was able to gain some strength back,, despite continuing with very intense chemo.
To be continued.......
I will try to get some new pictures in the guestbook...including Andrew's Thanksgiving performance.
Today is his last soccer game, HOORAY!
Have a great weekend!
Love,
Kim
Saturday, November 18, 2006 10:07 AM CST Hi Everyone,
Yesterday at Andrew's school, the Kindergartners did an adorable Thanksgiving Feast program. They were dressed up as darling Indians and sang really cute little songs. Their teacher used sign language in some of the songs (which I love) and the kids just looked too cute for words!
As an extra treat, 2 kids came forward and read a paragraph about Thanksgiving - and one of them was my little guy! He is such an amazing reader...amazing because we worried that he may never learn to read (because of radiation) and because he really learned to read by himself! One day, he just started reading everything....long words, non-phonetic words....it is so wonderful to hear him read!! I am just so proud of him, and thankful to God!
Afterwards, the kids all sat down for a Thanksgiving Feast.....and the less-than-proud moments began. Andrew is on steroids this week, and why should our last dose of steroids be anything but horrible?? He has been extremely angry and emotional,, pushing every possible button that I have. Anyways...so at his school feast, while the principal is praying, Andrew is getting upset and obsessing about his apple juice, "Can I have this apple juice or NOT?!!" over an over....despite my having said he could have it (I normally dont allow him to have juice). Then....even though the teacher said they didnt have to eat the Thanksgiving food they were served...(which lots of kids dont care for)...it was Andrew who had a meltdown over it....to the point that they brought him some pizza (the hotlunch people still brought hot lunches, despite the feast, and Andrew lucked out!) Now, I realize that his chemo makes his food taste yucky (thus he only likes bland stuff)...and his steroids give him strong cravings...and nothing else will do....but it is trying on my nerves when he goes into his angry-tantrums. I am really glad this will be the last steroid-induced week of rage. (now we can just have regular kid tantrums)
Continuing on with his treatment journey.....Andrew was a real trooper with his radiation. The next phase of treatment was extremely hard for him.
This first picture was taken at Easter, about a month after his radiation. It was about this time that his body started struggling through treatment, although you'd never know by his smile:
He is so proud of the "easter egg" cake he helped decorate.
The next couple of months he needed a lot of blood, was vomitting quite a bit, developed anorexia, and became so weak he couldnt walk. I dont have any pictures of his toughest two months...much of those two months we were in the hospital, as the chemo was too much for him to handle. Knowing that many of the kids that die dont really die from the cancer, but from the damage of the cancer treatment, we feared that his body was shutting down, we feared that we were losing him. He would sleep 23 hours a day, and was in awful pain. We did a lot of tests; bladder, kidney, he was scoped from both ends, trying to find the source of all his pain. It was during this time,, that his body was getting thinner, frailer, and despite putting him on tpn (fatty lipids via IV) and an appetite stimulant, he dwindled down to 22 pounds. It was a very scary time for us. It was hard to spend so much time in isolation - as he wasnt allowed to be around people - so much time in the hospital surrounded by sick children.
Finally, (and I say finally, because we should have done it sooner) at the end of May, Andrew had a feeding tube placed in his nose. We would hook him up to a pump each night, feeding him "kinder-cal" (like ensure), through the tube. I remember when we came back up to his room after having it placed, and it was making him cough and gag, I said, "Im so sorry that you have to have that." and he looked at me, so much braver than a 3 year old should ever be, and said, "mom, Im ok."
It seemed to me to be like a miracle...he immediately started to gain weight and perk up....I remember in the hospital, when he finally sat up, talked and seemed to get his old personality back....the feeding tube made such a huge difference.
The feeding tube was placed just before Doug's first Team in Training ride in Tahoe. We didnt think we would be able to go up and cheer him on, since Andrew had been so frail, but buoyed by the effectiveness of the feeding tube, we went up and here is the picture where Doug and Andrew crossed the finish line together:
It seems crazy now, but I remember thinking that Andrew looked SO HEALTHY in that picture...because the weeks before he looked even more frail and sick. In this picture, he had gained 6 pounds, back up to 28 lbs. 6 lbs looks like a lot on a 22 pound kid!
Here are pictures taken a month or two later, at an Angels game with the Leukemia and Lymphoma Society. He was still very weak and sick, but he really had improved from the months prior, and he was able to gain some strength back,, despite continuing with very intense chemo.
To be continued.......
I will try to get some new pictures in the guestbook...including Andrew's Thanksgiving performance.
Today is his last soccer game, HOORAY!
Have a great weekend!
Love,
Kim
Thursday, November 16, 2006 1:08 PM CST Hi Everyone,
Thank you for your faithful prayers. Andrew has felt pretty good, in light of his procedures on Tuesday. We never know how it will effect him, and the vincristine (a chemo infusion) can really increase his bone/nerve pain, as do the steroids (which he is also on this week)...but he has not complained much...so thank you!! I know that God is keeping him strong.
As I continue with the cliff notes version of Andrew's treatment, and all that God has done for him, I come to the part that was very difficult for Doug and I, more so than for Andrew....the radiation.
It is sad to say, that treatment for childhood cancers is majorly underfunded. The government gives large amounts to agencies, and those agencies primarily look at adult cancers (since that is where the numbers are)....95 percent of children with cancer are on trials...that means experimental, unsure, crapshoot style trials. It was a huge shock to me, as a parent, to realize that they really dont know a lot about how to treat these kids. I am thankful that survival rates of increased over the past 20 years, but the main reason they have increased, is because chemo treatment has increased in intensity and duration....and the damage to the kids has also increased...there is a price for survival, as Doug and I so painfully considered ....
Early on in Andrew'w treatment, I learned that the t-cell kids were relapsing at a pretty high rate. T-cell only accounts for 15 percent of ALL leukemia, and it is usually seen in teens, not toddlers. There is not as much research re: t-cell, as they have not known about it for very long...it is also more aggressive. I realized, that Andrew was probably not getting enough CNS treatment
**footnote here....leukemia is cancer of the blood, and blood is formed in the bones, so the cancerous cells are circulating throughout the entire body...bone and blood. As humans, our cerebral spinal fluid and our brain are protected by the blood-brain barrier...so many of the chemos do not cross over to the csf and brain. T-cell kids relapse often in the csf, as the cancer cells "hide" there from the chemo. That is why the spinals are necessary, to inject the chemo into the csf and around the brain, to get any hiding cancer.
Radiation is also effective at killing the cancer that is hiding on the brain....
We gave Andrew extra spinals, on top of his treatment plan, when we realized the t-cell kids were having frequent relapses. We met with our doctors, did research, and really hoped we could come up with a plan to decrease his chances for relapse, while doing the least damage to his brain.
Then, over and over, research indicated that he really did need the radiation.
This was painful to accept, as radiation to the brain, particularly in young children....and especially with spinal chemo (which we had majorly increased) was known to cause marked cognitive deficits.
Now, when you are trying to save your child's life, it may seem like cognitive deficits are a small price to pay...but they can be very severe, and studies show that special education and difficulty with basics such as reading and attention are greatly affected. Additionally, it puts the child at risk for future brain tumors, stunted growth ...and more....
But God made it clear to us, against our wishes, I might add...that Andrew needed the radiation.
Each day, for 8 straight days, we took him to get his radiation. I have already told you how bravely Andrew handled the treatment. Most children under 8 are sedated, as the mask over their face is tight (Andrew's left mesh shaped bruises on his chin!) and the big radiation machine gets very close, within inches of his face, encircling him, moving back and forth, which is frightening even to adults. During radiation, it is imperative that you not move, even a little bit, or the radiation can hit the wrong area (causing blindness and other problems)...but with his head tightly bolted to the table, Andrew laid very still.
Here are pictures of him during his radiation....you will notice that his face was starting to swell again, as he was back on steroids ...these were taken in March of 2004.
The ladies were so proud of Andrew..each day, he just marched his little self (he was only 3) into the room and up to the table. Like he has done so often, Andrew takes on his treatment like a stoic little man.
Fast forward to 2 and 1/2 years later (today!) and Andrew is doing so well. We just had his teachers conference yesterday, and we are all amazed at the work that GOD HAS DONE....Andrew is doing well in school, better than I ever would have imagined!!
Please continue to pray for him in this area....he has continued his spinals for the past 2 and a half years, and research shows that if you need radiation, you should do it at the end of treatment, as spinals on top of a radiated brain are particulary damaging. Unfortunately, we did not have that option. Also, as most of you know, Andrew's MRIs of his brain have shown damage since BEFORE the radiation (most likely from all the spinals)....we are due for another MRI soon...please pray that God has healed any damage! Also, the damage continues to deteriorate the white matter over time, so often the damage doesnt show up for 5 or 10 years!! For this reason, we ask that you please continue to pray for protection for Andrew - thanking God for what He has already done.
I will continue with this journey later.....I have recounted the first 8 months.....He had 15 months of intensive treatment, the hardest stays were still ahead....
I hope you are all enjoying your week, we are having amazing weather...warm and clear!
love,
Kim
Thursday, November 16, 2006 1:08 PM CST Hi Everyone,
Thank you for your faithful prayers. Andrew has felt pretty good, in light of his procedures on Tuesday. We never know how it will effect him, and the vincristine (a chemo infusion) can really increase his bone/nerve pain, as do the steroids (which he is also on this week)...but he has not complained much...so thank you!! I know that God is keeping him strong.
As I continue with the cliff notes version of Andrew's treatment, and all that God has done for him, I come to the part that was very difficult for Doug and I, more so than for Andrew....the radiation.
It is sad to say, that treatment for childhood cancers is majorly underfunded. The government gives large amounts to agencies, and those agencies primarily look at adult cancers (since that is where the numbers are)....95 percent of children with cancer are on trials...that means experimental, unsure, crapshoot style trials. It was a huge shock to me, as a parent, to realize that they really dont know a lot about how to treat these kids. I am thankful that survival rates of increased over the past 20 years, but the main reason they have increased, is because chemo treatment has increased in intensity and duration....and the damage to the kids has also increased...there is a price for survival, as Doug and I so painfully considered ....
Early on in Andrew'w treatment, I learned that the t-cell kids were relapsing at a pretty high rate. T-cell only accounts for 15 percent of ALL leukemia, and it is usually seen in teens, not toddlers. There is not as much research re: t-cell, as they have not known about it for very long...it is also more aggressive. I realized, that Andrew was probably not getting enough CNS treatment
**footnote here....leukemia is cancer of the blood, and blood is formed in the bones, so the cancerous cells are circulating throughout the entire body...bone and blood. As humans, our cerebral spinal fluid and our brain are protected by the blood-brain barrier...so many of the chemos do not cross over to the csf and brain. T-cell kids relapse often in the csf, as the cancer cells "hide" there from the chemo. That is why the spinals are necessary, to inject the chemo into the csf and around the brain, to get any hiding cancer.
Radiation is also effective at killing the cancer that is hiding on the brain....
We gave Andrew extra spinals, on top of his treatment plan, when we realized the t-cell kids were having frequent relapses. We met with our doctors, did research, and really hoped we could come up with a plan to decrease his chances for relapse, while doing the least damage to his brain.
Then, over and over, research indicated that he really did need the radiation.
This was painful to accept, as radiation to the brain, particularly in young children....and especially with spinal chemo (which we had majorly increased) was known to cause marked cognitive deficits.
Now, when you are trying to save your child's life, it may seem like cognitive deficits are a small price to pay...but they can be very severe, and studies show that special education and difficulty with basics such as reading and attention are greatly affected. Additionally, it puts the child at risk for future brain tumors, stunted growth ...and more....
But God made it clear to us, against our wishes, I might add...that Andrew needed the radiation.
Each day, for 8 straight days, we took him to get his radiation. I have already told you how bravely Andrew handled the treatment. Most children under 8 are sedated, as the mask over their face is tight (Andrew's left mesh shaped bruises on his chin!) and the big radiation machine gets very close, within inches of his face, encircling him, moving back and forth, which is frightening even to adults. During radiation, it is imperative that you not move, even a little bit, or the radiation can hit the wrong area (causing blindness and other problems)...but with his head tightly bolted to the table, Andrew laid very still.
Here are pictures of him during his radiation....you will notice that his face was starting to swell again, as he was back on steroids ...these were taken in March of 2004.
The ladies were so proud of Andrew..each day, he just marched his little self (he was only 3) into the room and up to the table. Like he has done so often, Andrew takes on his treatment like a stoic little man.
Fast forward to 2 and 1/2 years later (today!) and Andrew is doing so well. We just had his teachers conference yesterday, and we are all amazed at the work that GOD HAS DONE....Andrew is doing well in school, better than I ever would have imagined!!
Please continue to pray for him in this area....he has continued his spinals for the past 2 and a half years, and research shows that if you need radiation, you should do it at the end of treatment, as spinals on top of a radiated brain are particulary damaging. Unfortunately, we did not have that option. Also, as most of you know, Andrew's MRIs of his brain have shown damage since BEFORE the radiation (most likely from all the spinals)....we are due for another MRI soon...please pray that God has healed any damage! Also, the damage continues to deteriorate the white matter over time, so often the damage doesnt show up for 5 or 10 years!! For this reason, we ask that you please continue to pray for protection for Andrew - thanking God for what He has already done.
I will continue with this journey later.....I have recounted the first 8 months.....He had 15 months of intensive treatment, the hardest stays were still ahead....
I hope you are all enjoying your week, we are having amazing weather...warm and clear!
love,
Kim
Wednesday, November 15, 2006 1:10 AM CST Thank you so much for all of your prayers, they really made a difference!!
Usually, Andrew gets benadryl and zofran to minimize the nausea during spinals and bone marrow aspirates. Today, I asked if I could give him the benadryl on the ride up, as it also makes him sleepy, and calms his nerves (which was really needed!) They said "ok" and so that is what I did.
Andrew is not allowed to eat anything before his "procedures" but benadryl was allowed, YEAH!!
By the way, some of you have asked if he goes under anesthesia, and the answer is No. Some have asked if they numb the site, the answer, is NO.
Here is what Andrew gets:
Ketamine; which is an animal tranquilizer that is a popular 'street drug'. It causes hallucinations and body sensation detachment. It also inhibits memory. It is abused as a "date rape" drug.
In Andrew's case, it makes him feel separate from his body, and keeps him from moving. He also does not remember what happened when it wears off. During the procedure, he can talk, but is usually having hallucinations (today it was snakes in the wall)....
He also gets:
Versed;causes drowsiness and relieves his anxiety.
The two drugs make him feel very out of it and nauseated. Somtimes I think he hates the meds more than the back pokes.
Anyhoo...back to today....he was mellow when we arrived, thanks to the benadryl. The nurses and child life specialist were all great, in getting his meds in quickly and distracting him, so he didnt get worked up.
Because he isnt really asleep during the procedures, if he can lay down without being worked up, it goes easier...otherwise his body fights the medication when he is upset.
Today things went well......I still havent received the results, but should know tomorrow.
When I took his bandaids (big major adhesives) off tonight (they cant be left on, due to risk of infection)...the bma site was still bleeding a bit, nothing too bad...but that just tells you how big that hole is, still bleeding 10 hours later. His back is sore and bruised on the bma site, the lp site looks better.
Thank God that we are done with those back pokes!! Now, we have 10 days left of chemo, and then we really celebrate!!
As we have been going back, recounting Andrew's brave journey....It was January of 2004 when the steroids finally started to leave his system. He was no longer bloated with cravings for cheesy, greasy, salty foods. In fact, he wasnt eating much at all....to tell you the truth, I was still nursing Andrew (his choice, not mine) and it was about all he took. His weight dropped significantly, and he was very sick during the early months of 2004. He spent a lot of time in the hospital and really suffered a great deal.
The following pictures are all from January of 2004:
In this picture, early January, I took him outside for some fresh air...he didnt feel good, and I remember he was very weak that day. He had started to get a bit of fuzz on his head, but as you will see, it was soon gone again.
Christine was such a blessing to our family, I am so glad we had her in our lives. She always was there to cheer up Andrew and was often the only one to make him smile. Even though he isnt smiling, I can tell he loved cuddling with his baby sister.
Helping me bake Christine's birthday cake for her first birthday, end of January, 2004
It was during these months, that Andrew not only got all the chemo from his high risk treatment plan, but we added extra spinal taps. It really made him so weak...but he still had the big guns to face....I will continue tomorrow.....
Thanks for your prayers, and extra thanks to Kathleen for watching the girls today,, it was a huge help not to have to take them with us to the hospital. Also, for Lisa, for the beautiful blankets and gifts....we cant wait to share them with some other friends :)
love,
Kim
Monday, November 13, 2006 9:52 PM CST Well, with that ticker ticking away....I better finish Andrew's story.....
During that first week, they did labs every morning, and we watched as the percentage of blasts went downward. It is important that they get below 5 by the end of the week, it is the single most accurate predictor of prognosis - how they respond that first week. (BTW, testing is done differently now, instead of looking at 100 cells by hand, they look at thousands of cells by machine..it is called MRD - minimal residual disease..it is much more accurate, I asked for it early on, but was basically called a wacko and told to stay off the internet....now it is standard, but that is another story....) So, each day, by early afternoon, we would get the lab results, and check to make sure they were less than the day before. By midweek, something was wrong, as the numbers werent going down, in fact, each day, they started to go back up. By the 6th day, he was back into the 40 percentile of blasts in his blood. The doctors did his labs 3 times that day, each time, the blasts were higher than the time before.
That afternoon, Dr. Torno pulled Doug and I aside, and told us, "He isnt responding, I want to prepare you for tomorrow, that he will have a poor prognosis."
Doug asked, "what will you do? he is already on the strongest treatment plan" (she had explained with his high risk features, that he would be on the strongest plan...and now, it wasnt working.)
She said, in her very kind, quiet, caring voice, "well, we can look into some 'rescue therapies'"...
I remember turning around, and looking back into the hospital room, where Andrew sat with Grandma J. I felt my stomach drop, and my head felt like I was in a free fall, and I realized that I was going to lose him.
Now, 3 years later, I know how bad the news really was...not only were the blasts not going away quickly enough, but they were increasing- very bad!! I know that without divine intervention, Andrew would not have lasted that month. Dr. Torno knew this too, and she cried and prayed with us.
We prayed so much that night, and in the morning, he took a turn for the better and began to respond to the treatment.
That was such a horrible day, but it is important to remember....if we forget that day, we forget what God has done for Andrew, and we want to always let people know, that God has healed Andrew.
The following months were pretty yucky. He was put on high dose steroids, which caused the infamous 'roid rage'...Danny Bonaduce's got nothing on Andrew and the wild tantrums that he would throw (yes, my sick, reality TV addiction is showing again.) These were the days of non-stop eating, even DEMANDING that we go through drive thru restaurants in the middle of the night. And by demanding, I mean full blown, screaming, hitting tantrums that only got worse by the minute. It didnt matter that he didnt always eat what he wanted (the nausea and the cravings had their own battles within).
Andrew's adorable little boy face quickly changed.....blonde hair was replaced by patchy, brittle fuzz (we did shave his head, as we were told the hair would fall out...and it fell out in patches)
His cute face became pale, his blue eyes turned gray, and his cheeks became puffy, a sign of the steroids.
The steroid months lasted through the end of the year....as shown by the pictures below:
This was Andrew's 3rd birthday. We wanted to celebrate so badly, because in our hearts we feared it might be his last, yet he wasnt allowed to be around people. He woke up and was so excited that it was his birthday, and asked about his "party". Doug and I felt horrible...so we quickly called some friends, and asked if they could meet us at the park to celebrate. The park, in the open air, was a much safer environment, as Andrew was less likely to catch anything than if he were in enclosed quarters. He helped me make his cake, he wanted Rollie Pollie Ollie...he was so proud of his efforts!
In this picture, we waited for his counts to rise, and went to Disneyland, again, we stayed outdoors, and Andrew had a note from the doctor that allowed him to go to the front of lines to avoid crowds. POor guy, look how much his face has changed in just 2 months.
Here he is during the photo shoot for Christmas pictures...this is such a good example of the way his spirit triumphed, even when he was feeling pretty yucky.
Besides the change in mood and appearance, there was a lot of tummy problems, nausea and vomitting. The poor guy felt pretty horrible, and it was hard to know how to make him feel better. But God carried him, He definitely carried him through those early days.
Ill continue on tomorrow, after we return from the doctor....
thank you for continued prayers,
love,
Kim
Sunday, November 12, 2006 10:48 PM CST Hi Everyone,
The kids have enjoyed the long weekend. Tonight, we had a special dinner and playtime at the park with Andrew's classmates. His class meets once a month for these social gatherings called, "kinder-dinners" and they he has so many wonderful kids in his class this year.
This week is Andrew's "parent conference". We will discuss how he is doing. The only real issues are stamina/being in pain at times during class, and his fine motor skills. It hurts a lot to write, and I have noticed that he often writes one-word answers during writing assignments. I think it is because his hands get tired at school, so we are working on some ways to make things easier on him.
I have been retelling Andrew's story, as we countdown to Off Treatment...wow, just a day I thought might never happen, it is such a blessing that we are slo close!!
We went to the hospital Wed. night, and soon the torture began.
Andrew had his central line/double-lumen broviac placed. It is essentially a catheter that goes into his heart, and two IV lines hang out a hole in his chest. This allows direct access for chemo, blood and hydration. He went into surgery in the morning, and hours later he was back after spending time in the recovery. When the nurse went to use the broviac, it didnt work properly, so they went back down later that day and did a second surgery. His poor chest was bruised and sore.
He also got his first bone marrow aspirate and spinal tap. The difference....a bone marrow aspirate is a long needle (very thick!) that goes deep into the hip bone, through the lower back. It goes inside the bone and they pull out marrow, as well as a chip of bone. Your blood is formed in your marrow, and this allows them to check and see what is going on. Andrew's was packed full of cancer, as they expected.
The Lumbar Puncture (LP) or spinal tap, is really like when a woman get's an epidural for giving birth. It is a needle placed between the vertebrae in the spine. In Andrew's case, they allow a certain amount of spinal fluid to drip out,which they collect and test for cancer. Thankfully, Andrew's spinal fluid did not show cancer. They then screw on a syringe, and inject chemo into the spine. This will kill any cancer hiding in the fluid or around the brain.
These are done without being knocked out!! The meds they give both paralyze him and make him forget, but he does feel the procedures and they do hurt, A LOT!!
For mom and dad, those early days were horrible. The first night, we both slept in the room, on the chair/bed fold out things. It doesnt matter that they are too uncomfortable to actually sleep on, because I think most parents are like us, crying all night, not really able to come to grips with what is happening.
I dont know if I had ever seen a child with cancer, prior to Andrew's illness. Suddenly, it is like being thrust into a St. Jude's infomercial, and you are surrounded by bald kids, sick kids. And in the hallways, some rooms are crowded with family, usually signifying that someone has just been diagnosed, or is in their last days.
I remember the other families that were diagnosed with us....Carol, mother of Tony. We spent a lot of time together, huggging, crying and praying. We have since lost touch. Tony was only 8, had a brain tumor, and died that December. I think of Carol often, and pray that God has blessed her life in new ways, since her only child went to Heaven.
That first week, Dr. Torno explained to us a bit about leukemia, which we knew nothing about. She went over some of Andrew's high risk features; the high white blood count he had at diagnosis and his t-cell type. She said these would make it harder to fight, and said his chances of making it 5 years without a relapse were 60 percent. That really seemed horrible to us, especially since we kept hearing that leukemia was a "good cancer" and that 80 percent of the kids survive. We have since come to learn, that there is no "good cancer" and even survival is not easy.
While we were crying, sad at the thought that there was a 40 percent chance of relapse, a dad stopped us in the hallway to talk. We had met this dad in the playroom, he seemed to really take an interest in Andrew. He told us that his son was the same age, looked like Andrew, and also was named Andrew. But his son was on isolation, so we didnt get to meet him, only talked to his dad as he came to get toys from the playroom. Now, while we had met up with him again, in the hallway, he said that they were leaving. He asked if we had received more news, since we were crying, and we pitifully told him about Andrew's 60 percent prognosis. He was so empathetic and comforting to us. Moments later, his wife came up, with a sickly little boy in a wagon. He introduced us, and told us that they were going home. He said the hospital had done all they couuld, and they would be getting hospice care. His son died within the month, we later found out.
What a crappy floor - the children's oncology floor...there really shouldnt even be such a place!
For the rest of the week, Doug and I took turns staying at the Ronald Mc Donald house, so we could be close to Andrew. Only one parent was allowed to sleep overnight. Grandma J had taken off work so that she could care for Christine, and brought her up each day to spend time with us.
We went through the week, crying, sad, praying that God would somehow get us through.
Each day, Andrew had labs taken, and we watched as the percentage of cancer went down. He was busy getting chemo and blood transfusions, and we watched as his number went from 94 down into the 20's. The doctors told us that it was very important to get the number below 5 by the first week.
I will continue more later....
Please pray for Andrew. This Tuesday will be his last spinal and bone marrow aspirate...a pretty big deal, which we will celebrate! Please ask God to give him peace, the older he gets, the more upset he gets as the day approaches, and he has spent the past few days letting me know that he is having nightmares about the shots in his back, who can blame him???
Have a great week,
Love,
Kim
Thursday, November 9, 2006 11:29 PM CST Hi Everyone,
Thanks for checking in. Andrew is doing well, some leg pains, but otherwise staying strong.
I left off on the last entry, sharing about his diagnosis. We received a call from the urgent care doctor, who said that Andrew's blood work raised some concerns, and told us to follow up with our pediatrician when she returned from vacation. He mentioned that Andrew's lymphocytes were high, and we would need a bone marrow aspirate to be done.
Well, I didnt want to wait for his doctor to return, so I called the on-call doctor and asked (ok, I was pushy and insisted) that they get us in that afternoon for a bone marrow aspirate. I didnt want to wait any longer than I had to...I knew I couldnt sleep if we didnt clear this all up. The on-call doctor assured me that they were on top of things, and had already contacted a pediatric oncologist who I should hear from soon.
By this time, it was 3:30 pm or so, and I knew that doctors like to close shop a bit early....I was upset, and didnt want to wait another day to get this test done and find out what was wrong.
That was when Dr. Shen called. She is one of our Oncologists at CHOC. She said we would need to come down immediately for the test. That was fine, we live right down the street from Mission Hospital (which has a CHOC "satellite") Then she told me that we had to go to the CHOC in Orange (about 30 miles away)....that only the main CHOC hospital had a pediatric oncology floor. That is when she told me to plan on staying for 2 weeks...they could already tell from his blood work that it was an aggressive leukemia, in fact, 94 percent of his blood was cancerous. It was necessary to go down right away.
Doug hurried home, I passed off baby Christine (only 6 months at that time) to a friend (who told me not to worry...she would go to the store and buy bottles and forumla since I was still nursing Christine.) I thought we packed some clothes, some pajamas....but from the looks of our pictures, we didnt, as Andrew is in the hospital gown - not his own pjs. Having just moved in, everything was still in boxes...I do remember trying to rummage through boxes to get stufff....apparently I missed the jammies.
Traffic to the hospital seemed worse than ever...Doug and I cried the entire 2 hour drive...so badly that we had major migraines. All we knew was he had cancer, and it was aggressive....it all seemed surreal.
When we finally arrived, it was late, the oncologists were gone for the night....so we met with a resident, and the oncology nurses. I dont think any of them had the authority to tell us Andrew had cancer, so the issue was avoided and dodged all night...but hello, we were on the oncology floor...not a big mystery there.
Poor Andrew...one of the first things they did was dig around in his arms to find a vein. It took so many tries that I lost count. With the cancer filling his veins, it wasnt easy to get a good site. Eventually, after what seemed over an hour, with lots of crying and screaming....he was all set. Andrew called his IV and splint his "cast"....as daddy had a broken wrist weeks before, and had sported a similar looking cast.
Because the oncologists had gone home, they didnt do the bone marrow aspirate that night. The following day was spent doing tests, getting blood, and getting informed re: Andrew's situation. And the first bone marrow aspirate was done 2 days later, Friday, August 8th.
Speaking of getting blood. With so much of Andrew's blood being cancerous, it was necessary to get transusions. And as he went through treatment, which killed off his blood, he needed many more. In the past 3 years, Andrew has had 22 blood transfusions. 5 platelet and 17 red blood. Please, this holiday season, consider giving blood!
Here are some pictures....one is late that first night, finally settled down with his cast.
Here he is the next day, in the playroom with Baby Christine on the floor. You can always tell the "new kids"...they have hair, often the "hospital gown" instead of their own jammies, and the IV in his arm...as veteran cancer kids have either broviac "tubies" or a port - not an IV in the arm. Notice the bruises on his legs, and how he is akwardly trying to walk with his IV pole - something he soon mastered.
These pictures seem like so long ago, but yet, like yesterday. He was only 2...just a little baby really. It's amazing to think how far he has come, how much God has done in his life.
During that same week, Alonzo was being brought in for the first time too. Diagnosed with osteosarcoma, a tumor in his leg. Please keep Alonzo in your prayers. He is hoping for a miracle, and I know that God is able to heal him.
No school tomorrow...thank you to the Veterans who have fought and are fighting now. Thank you Uncle John, currently on leave from Korea, for protecting our freedoms.
Love,
Kim
Wednesday, November 8, 2006 12:08 AM CST Wednesday, November 8, 2006 12:08 AM CST
Hi Everyone,
Yesterday we went to the clinic, and then over to the hospital for x-rays. The nurse read me the x-ray results, which just says "negative"...they were rechecking the left lobe, which looked collapsed, and the thymus, which was larger than it had been. So, "negative" while good....doesnt assure me that they looked at both things...so I will ask the doctor to go over it and double check.
Andrew has been complaining every day, that the doesnt want to go to school. This is such a horrible thing to hear, especially in Kindergarten. He just keeps saying it is, "too hard"...which, seems ridiculous, because I think much of the work is pretty easy for him. After further discussion, his hands are in pain from the writing. They are at that grade where they practice their letters, keeping them within the lines, etc. and I think all the writing is too much. He has neuropathy, which is damaged nerve endings, to the hands - just like the feet and legs. I talked to his occupational therapist, and he said that Andrew needs to learn to stop writing when his hands get tired, and tell his teacher. I talked to his teacher about this, because I really dont want him to dislike school, and truth be told, I dont care what his handwriting looks like....I mean, I do....but in the grand scheme of things....I dont. Some of this pain may go away when he finishes treatment (since the med- vincristine- that causes the damage will be done), and some of the damage may be permanent, we wont know, only time will tell. But, it's not like his eyes are hurting, and we have to keep from learning to read...it's just penmanship, and if he ends up with horrible writing, well, he can be a doctor :)
Two questions that I am asked often; what causes leukemia? and how did you know Andrew had leukemia?
What causes leukemia??? WHO KNOWS?? no..really....what they do know, is that it is not hereditary (it doesnt happen more often in siblings), you cant "catch" it from someone else, and there is no *one* thing that causes it.
It is most likely several events that happen together. Leukemia (like all cancers) occurs when a cell is damaged, and starts replicating incorrectly. Cells multiply and divide, but when it is damaged, it starts making damaged cells or goes out of control. We dont know how the cell got damaged in the first place. There may have been things that happened to predispose the cell, or weaken it....they just know it is not any one thing, which is why it is hard to figure out. They do know that maternal exposure to radiation increases the risk (I did not have any radiation exposure), also "benzene" which is a chemical most often found in gas fumes (but also in adhesives, etc.) can put people at risk.
Personally, I think that our boat ride on Fathers Day might have been the final "hit". We were out in Newport in a boat, and it broke down. Another boat came and towed us back...it took 45 minutes, and the whole time we were breathing in the exhaust from the boat towing us. It was just 6 weeks later that Andrew was diagnosed...the timing is right...I think those gas fumes were involved. But again, it was probably one in a string of things...otherwise, everyone who smells gas fumes would get leukemia (although, keep in mind, that our bodies are doing different things at different stages of development. Leukemia is very common with kids ages 2-6, so there may be something going on at that time that makes kids more susceptible than at other ages.)
How did I know that Andrew had leukemia? Well, our story is probably different than most peoples. Most kids have recurring infections (bronchitis, ear infections, etc.) that last for months, and wont go away. They get fevers, dont feel good, and it continues over periods of time, not responsive to meds. Most of the kids get bone pains, because the leukemia is developing in their bones, causing pressure and pain.
For us, Andrew was never sick, and he never complained. I did notice a lot of bruises, the reddish type that were lasting for a long time, and didnt seem to be getting better. We were in the process of moving..we had just sold one house, getting ready to move into the other. I thought that maybe I was overly stressed, and being rough with Andrew (grabbing him to hard, not being gentle enough when I lift him into his car seat, etc.) Doug thought the same thing, and asked about my discipline practices! I remember one day, we were going somewhere, and Andrew's arms were covered in bruises, so I switched him into a long sleeve shirt, so that nobody would call the cops, and noted to myself to be more gentle. I also thought, that it was because he was so active, and with everything in boxes, he must just be bumping into things more.
We moved into the new house, and I noticed that he had a bruise on his chest, I "finger tip" bruise (most of the bruises were finger tip or hand print bruises). I thought for a long time, and knew that I would never have applied pressure to his chest. Maybe I might grab his arm too hard, but I would never touch his chest with any amount of pressure, no matter how stressed out. I called our doctor on Monday, and she was on vacation...so I let it go. Tuesday morning, Andrew had a touch of blood inside his nose...not a full blood nose, but just a drop,and it confirmed in my heart what I thought...he had leukemia. I called a friend (who had leukemia herself) and told her my fears. I then decided to take him to urgent care, since our doctor was on vacation. I asked that they do a blood test. The doctor really thought I was crazy. He said that Andrew was probably anemic, not eating enough iron, etc. I knew that wasnt true, as he was a very healthy eater. I knew he didnt have any deficiencies. So, they did the blood test.
We went to the pool that day...and on the way home, I got the call, that there were concerns with Andrew's blood tests......(to be continued)
Here are some pictures taken of Andrew....all of them within a month before his diagnosis...he was always so healthy, so vibrant and full of life....
Thank you for your support for Andrew,
Love,
Kim
PS. please continue to pray for our friend, Alonzo. Andrew and Alonzo were diagnosed the same time, and we spent a lot of time in the hospital together. It is bittersweet for us, that as Andrew finishes his treatment on a good note, Alonzo (at the suggestion of our doctors) has decided to stop his treatment too. His cancer has spread, despite trying every possible chemo, and he and his family have accepted that there is nothing more the doctors can do. This is a really horrible thing for a 17 year old boy to accept...he is such a nice boy, and he has fought so hard. He asked his mom to take him to France to go to Lourdes, where there is holy water...in hopes of a miracle...they will leave for Europe next week, despite his frail and painful condition. Please pray for Alonzo and his family, and continue to ask God for a miracle, that only HE can provide.
Monday, November 6, 2006 11:21 PM CST Hi Everyone,
Thanks for checking in and joining us as we celebrate Andrew's chemo countdown. I keep telling him, that soon, he is going to start to feel better, I dont know if he really gets it, since he has been on chemo for so long with no break.
Before being diagnosed, Andrew ate anything I gave him....any vegetable, anything. Since starting treatment, he has either been too nauseated to eat, craving salty/cheesy stuff because of steroids, and had his taste buds altered by the chemo (the chemo chages the taste buds and makes everything taste strange.) It has really messed with his food preferences.
I have told him that it isnt that he "doesnt like" foods...because he used to like them, it's just that while on chemo, they dont taste right. We are all exicted to see what foods (healthy stuff) will taste good again. In fact, recently he added celery onto his "like" list...and he is very proud, and eager to add on more foods once the chemo is out of his system.
As for the kids...they had a fun weekend. Christine had a friend over to play on Friday...it is fun to see her developing her own friends, interests and personality.
Friday afternoon, Grandma J took the kids for a "slumber party" and they had a blast....they ate junk food, went to target and bought new "digital pets" (which they love!) and went to *Boomers* for some fun.
Tomorrow, we go to the clinic. Andrew will have x-rays or MRIs...I dont remember which, to double check his lower, left lung as well as his thymus. We were supposed to do that last week, but things got busy.
Please pray that these tests have good results for Andrew.
Also, please keep our friend Alonzo in your prayers, as his cancer has spread to his heart. Additionally, please pray for our friend Christian He is an 8th grader at Andrew's school, who is up in Seattle having a bone marrow transplant. His leukemia was not resonsive to chemo, and it was necessary to have a transplant to be healed. He has some important tests coming up, please pray that the results are good for him. Feel free to let him know that you are praying, it gets very lonely on this road, especially when you are isolated and so far from home.
There are new pictures in the photo album.
Dont forget to vote!
love,
Kim
Thursday, November 2, 2006 7:05 PM CST As Andrew approaches the end of treatment, memories of the past years flash through my mind. Sometimes, I feel so relieved to be at this point, with Andrew doing well, early on, we wondered if we would make it, and we thank God that He has brought us here.
As thankful as we are, at times I am angry. Ages 3, 4 and 5 are gone. We had good times, and I try to hold on to them, but Andrew also suffered and endured so much during years that should have been full of innocence. Little boys should never have coring needles put into their hip bones, spend weeks and months (years) overwhelmed by nausea, be isolated from friends, learn to take handfuls of pills, pull their own blood draws, or pronounce the word “leukemia”, especially before they ever get to school. When Andrew was born, I imagined so much for his life, but never any of this. Im glad we are moving on, but part of me will always grieve for what should have been for my toddler/preschooler.
Andrew has grown up and developed an amazing spirit. As Doug and I learned to accept his cancer, we prayed that God would use it for good in his life, somehow. The Bible says that the enemy prowls around seeking to destroy us, but what the enemy meant for harm (you see, cancer was the enemy’s plan…not Gods)….God can use for good.
Confident, self assured, and trusting. Andrew was all those things, and we worried that years of medical torture (there isn’t any other way to characterize cancer treatment) would make Andrew depressed and fearful. Research supported our worries, as a significantly large number of childhood cancer patients develop depression, social anxieties, and have a high rate of suicide later in life. Constantly feeling sick, having strangers poke and hurt you, the isolation, and being slowed down are things that can squelch the human spirit. We prayed that God would protect Andrew, and keep him strong.
Now, as I look at my 6 year old, I have no doubt that God heard that prayer. Andrew learned to take charge of the clinic and hospital, often marching around with his IV pole, as if he owned the place. Chatting with kids and adults alike, old and new, always very self assured. I often joke that I could drop Andrew off in Times Square, and be certain that he would be OK. He has an uncanny sense of finding his way, being resourceful, developing social contacts, and being sure of himself….he could survive anywhere…..he took on cancer, I know he can take on anything. While the enemy meant to tear down my son, God used this war to make Andrew stronger.
Andrew has always been inquisitive and bright. He has a natural curiosity for exploring and learning. We were told early on, that he would probably have cognitive damage from the chemo. Then, when we added radiation, the experts were certain that Andrew would suffer measurable losses. They prepared us, letting us know that he would most likely need special ed, that he wouldn’t be able to go to college, but perhaps would be able to learn a trade…in any case, it was what we needed to do to save his life.
Doug and I researched and prayed, measured our options out with such anguish, as we knew that we had no other choice but to put him through the damaging treatment. It didn’t help, that even before the radiation, the MRI’s showed damage to his brain, from the first few months of chemo.
In the short term, the radiation treatments were the easiest part of Andrew’s treatment. They didn’t hurt or make him sick. As parents, it was the hardest part of his treatment for us. Placing him up on the radiation table felt like we were Abraham, placing Isaac up on the altar. We feared the damage, the destruction of the gifts that God had given Andrew, we feared the recurrence of cancer….as the radiation puts him at risk for other cancers, in particular, brain tumors. When it came time to go under the guns, Andrew filled our hearts with bittersweet pride. Children 8 and under are always sedated for the radiation. A tight, fitted mask would be put over his face, and bolted down the table. He would need to be still for the entire session. Yet, Andrew - who was only 3 years old, amazed us and did it without being put to sleep. During a practice session, he climbed onto the table and laid down. He held still while they covered his face and immobilized his head. The nurses were amazed at how mature he was….and realized that he could do this on his own. So, I watched, sad that my little guy had to be so brave, day after day, lying still, while large machines encircled his head, killing off the white matter in his brain.
He has endured so much through this trial. He still does. Our recent week in the hospital for Andrew’s intense bone/muscle/nerve pain, was a reminder that he lives with this horror every day. Out of his 73 months on earth, 40 of them have been with cancer, daily chemotherapy, and pain.
Today, Andrew’s teacher handed me a packet to fill out…..a few pages that we will complete for Andrew’s “I am special” folder. I will cover the outside with pictures, and inside write about him…..I wish that the pictures, the story, had nothing to do with cancer. I guess if he went to karate every day, and was in tournaments for karate each week, and went on karate camp outs every month……since the age of 2, that a big part of his “I am special folder” would be about karate….but its not, It’s about cancer. I resent that he is “the boy with cancer”…. Im mad that this was ever his journey. Yet, so much of who he is, his gifts, strengths, are because of his cancer……again, what the enemy meant to harm him, God has used for good. As much as I hate that he was afflicted in this way, it is his testimony, that God has healed and protected him.
Today, Andrew said,
“Im sad that I am going to be all done with my cancer”
me: “really? Why is that?”
Andrew; “Ill have to get rid of my port, just like I had to get rid of my tubies, and they have been my friends.” (these are the central lines where they hooked up his chemo, they both went directly into his heart…the tubies came out of his body, like IV lines, and the port is under the skin. The tubies made injections painless – since the iv was hooked up to the tubes, and the port reduces that hunting around in the arm for a vein that he would otherwise endure.)
Me: “yes, they have been good friends to you…they helped take away the owies when you got shots and medicine…they were very good friends. But, you wont be getting all the chemo and shots anymore, so you wont need to have them in your body, but they can always be your friends.”
Andrew; “They have been my best cancer friends, and Ill miss them.”
It breaks me heart that he has had to have these type of “friends” and I realize how much of his emotions, his life, is based upon his cancer.
One good thing that he has learned, although he is getting a bit “too good”….is he is a loving and affectionate boy.
Being a little boy with cancer…he was the recipient of hugs and kisses from many people….medical staff, other cancer families, friends, neighbors, strangers….would all hug and kiss Andrew – as a way of showing their love and support to him- to wish him well.
Now, he really doesn’t understand that you cant hug and kiss everyone!! His teacher pointed out (and this is nothing new) that he has been kissing the girls, and they don’t all appreciate the love. So, we are reminding Andrew to develop some boundaries……and not maul people with his hugs and kisses.
While this is an important lesson to learn…it is a reminder of how much love he has been shown during these years….love from many of you!!
Thanks for your love and prayers,
kim
Thursday, October 26, 2006 11:43 PM CDT One month to go and ticking! I plan on reviewing Andrew’s journey, including all of the blessings that we received along the way. First, I want to mention some of the people that made this all possible.
On the frontlines of this battle, the first persons we met, were the doctors.
It began with Dr. Shen, telling me over the phone, that Andrew had cancer. She told me it was aggressive, and we needed to come down to CHOC (in Orange) immediately, and plan to stay for 2 weeks or more.
While I had a gut feeling that Andrew had leukemia, it was the first time that someone said the words, admitted it. I don’t remember my response, except to cry, to sob and scream. Her gentle voice tried to comfort me, she told me that she had cancer too, she understood. She was the first of many amazing doctors that we have met on this road.
Let me just say, that I cant imagine what it must be like for these doctors, to feel as if the lives of children depend upon them…upon a science that is still crude and uncertain.
Bald children, with dark circles under their eyes, bodies fighting weakly to stay alive…that’s what these dear doctors encounter, day upon day. And maybe even more burdensome, are the parents that are desperate for answers, for a cure. We all know that many kids don’t make it, but we are all fierce in our determination that ours will not fall on that side of the statistical curve. I cant imagine anything more intimidating than a mother bear fighting for her cub, and these dear doctors face us every day, always with compassion. They try their best to allay our fears, despite not having all the answers – what a tough spot to be in!
Committed to help kids like Andrew, they work long hours, often sacrificing special occasions with their own family. They take calls 24/7 and are easy to get by phone at all hours. They have never been anything but kind when I call, even in the middle of the night. They have listened patiently to all of my scared rants, answered my questions – even the ridiculous, and done everything they can to make us feel more at ease during this process.
The thing I have come to appreciate most about Andrew’s doctors, is their love for Andrew. I can see in their eyes that they care about him, love him and want him to make it. I know they are as proud of his progress as I am, and I appreciate being able to share his life with them.
As you can see here, with Doctors Kirov and Neudorf (two of our oncologists) Andrew feels so comfortable with them, and they are very loving towards him.
Then there is our “primary” oncologist (that just means I get to bug her the most), Dr. Torno. She took all my questions and research articles, and made the changes in Andrew’s treatment that saved his life. I believe with all my heart, that it is because of Dr. Torno that Andrew is here today.
When Andrew grows up, he wants to be a doctor that gives bone marrow aspirates (the thick needle into the hip bone) I have joked that it would be an ironic twist of fate, if in 30 years, he is treating his doctors! HA! It is a testament to their kind and gentleness towards him, that he wants to grow up and be like them.
It really is hard to explain, how much my heart overflows with love for each of his doctors. Their sacrifices, compassion and commitment have been our life line to hope. They will always have a special place in my heart, I will always feel indebted to them, they will always be like family to us.
As we begin Andrew’s Off Treatment countdown, it is only fitting that these amazing doctors start off the celebration.
Thanks for your prayers and for celebrating with us!
Love,
Kim
Thursday, October 26, 2006 11:43 PM CDT
Thursday, October 26, 2006 11:43 PM CDT
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Thursday, October 26, 2006 11:36 PM CDT here is my update
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Tuesday, October 24, 2006 5:15 PM CDT *** NEWS FLASH ***
Check out the ticker!! That's right, just one more month left of chemo for Andrew...WOO HOO!!
Many people have asked, "what does this mean for Andrew?"....
When Andrew was first diagnosed, 94 percent of the cells in his blood stream were cancerous. Those cancerous cells were deep in his bones (where they are formed), throughout his entire body....
Through experimentation, doctors have tried to find the fine line of how much chemo they can give without causing "neurotoxicity" (a nice way of noting when the toxic chemo is causing life threatening damage.)
In the past 20 years, they have majorly increased the amount of chemo (both in dosage and duration) and the results have been better survival rates...but with more long term damage.
They found that if they stopped Andrew's type of treatment after 2.5 years, a high percentage of kids relapsed. So, they have increased the trial to 3.5 years for boys with his type of leukemia.
So, after 3.5 years of balancing fighting the cancer without too many side effects....we now wait to see how successful it has been.
Unlike a tumor, where you can go in and see if it is gone, luekemic cancer cells are circulating everywhere in the body. There is just no way to measure if they are all gone or not. So, based on the experimentation, chances are on Andrew's side that they have killed all the cancer. However, if even one cell is left hiding, it will come back.
Please pray that each cell is gone. Andrew will have frequent blood checks to make sure that a cancer cell hasnt remained, multiplying. He will receive meticulous follow up for the rest of his life, monitoring him for cancer and the long term side effects of his treatment.
And...speaking of follow up care. We will have new insurance as of November 1st, and Andrew will be authorized to receive treatment at CHOC again. Too bad it didnt happen sooner, as his 8 day stay earlier this month, was a doozy....it was like a "grand finale tour" with him seeing a multitude of specialists, and having all kinds of tests.....We are still in the process of having the state review our case, and hope that Kaiser will have to pay for his care. If not, Ill cross that bridge when the water overflows, ha ha!
We are just thankful that his follow up will be with CHOC. They have a comprehensive team, and will be able to monitor him for side effects. (some people have asked about his side effects, and while they are just now coming out with the research on survivors - since this is the first time that large numbers of kids have survived, and they are now able to study them, they are finding organ damage, cognitive damage, secondary cancers, etc...so it is important that he have his CHOC Team to care for him.)
Ok., sorry for the long, and pretty boring post......
I plan on doing a retrospective (with pictures) of Andrew's journey.....as we count down this final month of chemo.
Thanks for your birthday wishes and continued prayers,
Love,
Kim
Sunday, October 22, 2006 11:10 PM CDT Well, 6 is off to a great start! Unlike the past couple of years, when we had unusually stormy weather on Andrew's birthday, this weekend has been sunny and bright.
Andrew started off on Thursday, with a "serenade" from his schoolmates, while wearing a special birthday hat. (see photo of Andrew and his principal with their fancy toppers) He had a great day at school, which ended with dinosaur cupcakes. I should point out, that I decided to give in to his never-ending demand for a "lunchables"...so he had a special lunch too.
After school, we rushed over to meet Grandma J for dinner at the Rain Forest Cafe (picture in the photo section)...he is still wearing the hat that his teacher made for him.
Today, we had a party for his little friends. It had the bounce house that the weather refused to let us have in past years....so he was excited to finally jump and slide. He really raked in the goods, including lots of board games (which he is really getting into)...we like to play them on "family game night"
One damper on the day, was that he is having a banner ROID RAGE weekend, so he wasnt very nice to all of his friends....he seemed to be paranoid that others would take the plastic dinosaurs from his cake (picture included)...he even made one little sweetie cry!! ("NO, YOU CANT HAVE MY DINOSAURS!!")
Lucky for him, he has kind friends who forgive easily....and they all seemed to have fun.
Tomorrow is someone else's birthday (??????) although I have it from a reliable source, that the best gift is watching Andrew celebrate his birthday.
Thanks for checking in....
Love,
Kim
Thursday, October 19, 2006 9:28 AM CDT Dear Andrew,
Today, this entry is to you. I hope for years to come you will read this and know how much I love you.
Exactly 6 years ago, I was holding you, and it was the best day of my life. I always tell you that you were the boy I always prayed for, and each day that becomes more and more the truth. You are the most amazing boy in the world, and Im glad I picked you.
We picked your name, "Andrew" because he was the first disciple to spread the Gospel. Daddy and I prayed that God would use you to share the message of Jesus.
We never knew, that your purpose would start so soon, and that you would be sharing about God's love, His healing, His strength, His mercy and His blessings with so many people when you were only 2.
God has special plans for you Andrew. When you are reading this, you may not remember about the very difficult days that you endured as a little boy. You may not remember being so sick, and all the pain that you were in. You are too young to fully understand how God has intervened in your life and made your cancer go away. But I pray that as you hear stories, look through your scrapbooks, and read this journal, that you will have understanding about how much God loves you, how much your family and friends love you, and the value and purpose of your life.
Happy 6th birthday my brave boy. I pray that God grants you decades more life on this earth, each one walking with Him.....in joy and good health.
I love you more than the whole world,
Love,
Mommy
Wednesday, October 18, 2006 12:56 AM CDT Hi Everyone,
Andrew did pretty well at the clinic. He is at school today, looking forward to tomorrow, when I will be bringing in dinosaur cupcakes for the class, in celebration of the big 6!
I talked to the doctor about his enlarged thymus. The CT scan showed that it was bigger compared to 5 months ago. She said it is probably due to being sick, chemo, etc. (although, his body was going through all of that 5 months ago too.) So, we are going to do another x-ray in 2 weeks, to see if there is change.
I never knew what a thymus was before all of this.....it is a gland, part of the lymphatic system. It is located in your upper chest, and usually it disappears (shrinks up) by puberty. It is important in developing your immune system, and is where t-cells mature.
Most leukemias occur in the bone marrow, but many researchers believe that t-cell leukemia "happens" in the thymus, and then migrates to the bone marrow. Many t-cell kids have a medistinal mass when they are diagnosed, basically the thymus becomes so large that it inhibits breathing etc. Because of the thymus's role in t-cell ALL, this recent ct scan has me nervous....alhtough the doctors dont believe it is a cause for worry - since his labs look good. Please pray that it truly is nothing, and Ill let you know the results in 2 weeks.
Re: the "collapsed" part of his lung.....this could be some damage from his pneumonias, or he didnt inhale completely during the x-ray, but since he is not having any other symptoms, the doctors are not concerned.
I am still waiting to hear from the endocrinologist about the abnormal labs....it pertains to his thyroid...which has acted up in the past (and does for many leukemia kids)...so, nothing major here, but would still appreciate prayers that all is well.
THANK YOU to all my FLAVA Friends.....SOOOOOOOO glad I am not alone in being of depraved mind. Now for tonights Project Runway finale.....which is much more tasteful. These late night shows help me stay awake for the late night feedings of Elise...who by the way, is now sleeping until early morning hours (usually between 4:30-6:30) YAHOO!
Please pray for Christine, who woke up a bit sniffly. Hard to tell if it is anything or just allergies, but Im not quite ready for another round of illnesses......so pray she doesnt get sick and that our entire family will be protected as we head into cold/flu season.
And, as an aside, Andrew and our family are part of the high risk folks that are supposed to get the flu shot (for Andrew's protection)....HOWEVER, last year, he and I both got the flu within days of the shot....so I am opting against it this year...pray I am making the right choice!
Love,
Kim
Monday, October 16, 2006 11:06 PM CDT Well, many of my friends can breathe a big sigh of relief, as my favorite show is now over...the corruption of my mind has ended. Yes, that's right, last night was the "Flavor of Love 2" finale.....He ousted New York for the 2nd time, and Deelishis (his spelling, not mine) was chosen....
For those of you healthy enough to not know about this show, it is sort of a ghetto version of The Bachelor. And, it's not that it was my *favorite* show as in, I-really-think-this-is-a-great-show kinda way, it was more just an amazing study of abnormal human behavior -see it was career related, that is the real reason I watched it.
Each week, Doug assured me that I was THE only person in American that actually tuned in (but if nobody was watching, why did they come out with season 2????????)
Anyhoo....it's over, and now, Ill tune into the real Bachelor, which is just much more boring (and unrealistic).
As for Andrew....he is feeling better. His meds have him pooping out easily (he took another long nap in school today)..but the pain is less, and that is what matters.
Tomorrow we go in for IV chemo, I also have some questions for the doctor re: his endocrine results, and that the CT scan showed some collapse of one of his lungs, as well as some enlargement of his thymus (I never even knew what a thymus was, still really dont understand it.....but many researchers believe it is the origination of our t-cells)...so, not really thrilled that it is enlarged, in fact, it freaked me out when I heard..and one of our oncs assured me that everything was ok, but I want to know more about what it means that it is enlarged.
Please pray that all goes well at the clinic, also that Andrew's body tolerates things well, without further damage to his nerves.
This week is Andrew's birthday...my little boy will be 6.....WOW! so much to be thankful for!! It is really like a birthday week...I went to the OB on the 17th, came home and cried at the thought that it would be another week until I went to the doctor (translate that to, at least one more week of being pregnant...yes, I was a miserable pregnant person with all my kids, not just Elise.)
Thankfully, the night of the 17th, while sleeping on the toilet (the only place that seemed *comfortable*) my water broke.....spent the whole 18th in labor, and had Andrew via c-section just minutes into the 19th. So, it's hardly a birthDAY, more like a birthWEEK or at least birthdayS.....
These six years have not been what I expected or hoped, but God has been faithful, and in some ways Andrew is brighter, stronger, and more of a blessing that I ever imagined.
Thanks for checking in....
Love,
Kim
PS. if you happen to be a Flavor of Love fan...go ahead and admit it, it's rather humiliating to be the only one.
Friday, October 13, 2006 7:16 PM CDT Andrew has enjoyed being home. It was spirit week at school, and he had a fun time being with friends and joining in the festivities. He had some pain on Thursday, but not enough to warrant coming home. Today, he felt better, although he was very tired and napped from 1 until I picked him up at 3. I am hopeful that these new meds (and his learning to ‘pace himself’) will do the trick to make things easier for him.
We are sooo thankful to be home, thankful that Andrew is doing well in his battle. I think most people that visit a pediatric oncology ward find that it is a very sacred place. Wispy haired children ride their IV poles as if they were scooters. There mothers follow, and you don’t have to hear their voice to know what they are thinking…the fear in their eyes is clear, the pain in their hearts can be felt in their hugs. To live there for any length of time, including to stay for this past week, fills the heart with many emotions.
A few weeks ago, we went and saw an awesome and highly recommended movie, “Fighting the Giants” It tells the story of a high school football team, who learns to praise God, whether they win or lose. (it is playing in theaters now….a must see!)
When we are being released from the hospital, when we get back “all clear” bone marrow results, and when we look at how well Andrew is doing, it is easy to praise God, as thankfulness springs forth automatically.
It is a much tougher act, to praise God when you are being told your child has cancer, the cancer has spread, or there isn’t anything more we can do for your child. Yet, we have met so many friends who do praise God, as the song says, when the darkness closes in. (I hope you can hear the song playing!)
Please pray for our CHOC friends, who are currently on the road marked with suffering. The parents of Ricky, Michael, Amy, Bailey, Sammy, Cianna, Alonzo, Sam , Noah , Gavin , and Brendan .
And the greatest example of all, are the parents of those who have sent their children to Heaven…and through it all, continued to praise God. The parents ofJohn ,Gregory , Nicholas , Cam , Omar, TJ, and so many others…..please keep them in your prayers too.
This weekend, we will enjoy a carnival at Andrew’s school…..he and Christine are looking forward to the fun, and so am I.
Thanks for checking in……I am gonna say that Lynn gets the honor of being the 200,000th visitor…. Thank you Lynn for your steadfast prayers. They are a blessing to our hearts, and have undoubtedly been heard by God, as He heals Andrew.
Love,
Kim
Wednesday, October 11, 2006 5:29 PM CDT ***Thursday morning update****
Will write more later, but just wanted you all to know that we made it home late last night, and we all slept in comfortable beds without glaring flourescent lights (give me a few days of good sleep to get over the trauma....)
Andrew is back at school, happy to see his friends.
I have to tell you, as we were packing up to leave the hospital, he said, "I wonder what my friends at school will think when I get back." I wondered if he was worried about returning to school, and asked, "what do you think they will say or do?" and he answered, "well, I think they are all going to want to hug me." And, his sweet friends did give him hugs when he returned today...he is a lucky boy!!
love,
Kim
HI Everyone,
Thanks for your prayers.
We expect to go home tonight, but probably not until after 9pm.
Andrew's fevers have been gone for 2 days now, and he has been enjoying his time out of isolation. He has fun in the playroom, and his new "thing" is playing the game of "LIFE". Somehow, he always manages to get the best job, win the most money, have the most kids, ...he loves it! They also have Radio Lollipop here at the hospital, which is a real radio station. Kids can call in song requests, and it is all aired over the tv channel. You can also go to the "station" and be on air with the DJ, etc. Radio Lollipop is every T/TH. Last Thursday, Andrew called in and requested lots of songs, dedicated them to his friends on the floor and the nurses, etc. Last night, Andrew (no longer on iso) was able to go down to Radio Lollipop. He liked wearing the headphones and talking on air... In an effort to keep him from over exerting himself, I encouraged him to refrain from all the dancing...so instead, he shimmied and wiggled in his DJ chair. His favorite song to request is, "I can move it like this, I can shake it like that" by Baha Men. He seemed to think it was karaoke, and the DJ got a kick out of him singing along with his songs.
Today the endocrinologist ordered some labs (routine, as he is followed and tested for some things every 6 months....the chemo and radiation can cause thyroid damage, and also stunt his growth....) Some of his levels came back low, so they ran more tests this afternoon...should here back later. Andrew was on thyroid meds for a short time, earlier in treatment, we are hoping those have not come up again.
The doctor also ran his IgG levels (an immunoglobulin that helps fight infections) Many of the kids with cancer end up with low IgG levels at the end of treatment and even when treatment is finished. So much of their treatment suppresses their bone marrow, causing it to not function at full speed, and sometimes the marrow needs help in not losing it's abilities alltogether. We are going to get some IgG before we leave today, but it takes a while, so his infusion wont finish until later tonight.
We have been working on a plan to help regulate Andrew's pain. Unfortunately, cancer treatment is painful, and over the course of 3 years, it really takes its toll. We are going to increase Andrew's neuropathy meds (neurontin) and also add a pain reliever (ultram) to his regimine. We may also use another med as a muscle relaxer (low doses of elavil)..I dont think that has been decided yet.
Ultimately, we would like to teach Andrew not to over do things. We are using the analogy of working as a waitress....no one trip to a table, or the kitchen is too much in itself, but after a long day, the fatique sets in. We would like to teach Andrew to limit his physical activities, maybe getting up less in class, doing some sitting play (games or crafts) for part of lunch and recess, and learning to identify his own body's cues of fatigue and muscle soreness.
I dont expect this to be an easy task (heck, it has taken a week of experts to figure it out)....and the doctor said this is a long term issue that wont remedy quickly. We do hope to see improvement sooner than later. Andrew has always amazed me with his ability to understand mature concepts quickly, so I am hoping he can learn quickly, that even though it may not hurt too much to run around....excesses will catch up with him at the end of the day.
I expect that things will be back to normal tomorrow, with Andrew back to school, he really misses his Kindergarten friends.
Personally, I am looking forward to getting home....for many reasons, including that the novelty of free Oreos has worn off, and I want to sleep in a bed that allows me to move (I share the twin with Andrew in the hospital). It will also be nice to have a dark bedroom (no flourescent lights peering over the 'curtain')....and not have nurses or cleaning crews (yes, they do the industrial floor waxing at midnight!!!) being loud outside my door. Also...nobody will come in to take temps or blood pressure at midnight or 4:30 am. Can you tell that I am sleep deprived?????
It will nice to be back together as a family, thankful that overall, Andrew has fared very well through this battle.
BTW, we are coming up to our 200,000th visitor.....check the ticker and let us know if that is you! (yes, even if you are a lurker) :)
Love,
Kim
Monday, October 9, 2006 1:35 PM CDT ***Update #3****
I tried several times to update last night, but could not access caringbridge for some reason.
Andrew's BMA is clear - Thank God, and thank all of you for praying.
I will write more later, just wanted to get that news out so people didnt worry.
love,
Kim
**** Update #2.....2:00pm (PST) ****
I met with the doctor, and she is having the orthopaedic doctor come to see Andrew. She feels he may need braces to get over this hump with his legs. Ill let you know more after we see the ortho.
Andrew will be having a CT scan of his chest and sinuses today. Sinus and chest infections are common for immunosuppressed kids...and they are often resistant to the major antibiotics that Andrew is now receiving (as he gets these antibiotics rather frequently....) So, we will see if that is causing the fevers...Ill let you know more when we get the results.
She thinks the rash could be a number of things, so we will keep an eye on it...it has shown up today throughout his body, and is under the skin (not raised bumps, like he had on his face last week)....
She also has ordered a bone marrow aspirate for tomorrow. As many of you know, chronic bone pain and fevers are symptoms of a relapse, and while we dont think that is the case, at some point it becomes necessary to rule it out, and that time will be tomorrow morning. Please say extra prayers for the test to come back clear.
Thanks for your prayers and your love....also, Grandma J will take off work tomorrow to watch the girls...but after that, we may need to take some of you up on offers to help....although we really do hope to be home before Wed.....Ill keep you updated.
Love,
Kim
Hi Everyone,
Just a mini-update...I am hoping to talk to the doctor soon, and then I will have more of an idea about how we will proceed.
We noticed that Andrew has been walking on his toes and having foot drop quite a bit (you can hear feet slapping against the ground when he walks.) This is a common side effect,and was severe during his first 2 years of treatment, but it has gotten much better, and he has gotten much stronger, and I really didnt notice that it had developed again until recently.
He saw the physical therapist today, and she said that it was quite severe and she was concerned that his muscled will get "stuck" that way (I forget the clinical term she used.) The interesting thing that we noticed, is that typically (and this is true with Andrew before)...the kids are so weak, that they do a little toe walking and limit their activities due to strength. Andrew, however, has really gotten stronger this past year or two, and so now, he has the strength/stamina to push himself, and the issue seems to be that he is overdoing it.
He overdoes it so much, that this week, he can not stand, and if he does, he is crying and having to be high, high up on his tippy toes. The PT remarked, that she has never seen anyone do 5 laps around the 3rd floor, all the while on their tippy toes. She said this would certainly cause the extreme spasms that he is experiencing.
His hands/arms are also very tight, and along with his feet, she was not even able to stretch them.
I called my friend Lori, who used to be a PT here at CHOC (and is very familiar with the chemos and their effects)...she also knows Andrew and her son attended Andrew's school last year...so she knows the campus, etc.
She really believes, and I do too, that Andrew is not the type to "sit out"...he enjoys the social interaction far too much, and is inclined to push himself to keep up. She also knows the famous "climbing dome" at his school, and said that even playing on that for a short amount of time, would be too much for Andrew physically.
so many of Andrew's peers with cancer develop some social shyness or isolation,and we are thankful that he has not suffered in this way. Unfortunately, his desire to be with friends may be causing him to push himself too much.
Lori thinks that just walking to his class, to the playground, etc. for a full day, would be enough to overdue his damaged muscles, sending him into spasms, and creating this nasty cycle that has brought him to this point with muscle tightness/spasms.
His medical team and PT does not want him to leave school....so we are going to look at options (muscle relaxers, physical interventions, etc.) to help him get through his days. The PT is recommending therapy 3x a week at this point...we will see how to work that in.
I will be meeting with the doctor soon...so hopefully will have some answers.
On the fever front...his last fever was yesterday afternoon.....although he has a rash and swollen eyes....so, not sure when we will go home, but please pray that it is soon....I get so behind with life when I am here, not to mention, that I really miss our family being together...andt his is a lot of pressure on Doug.
Thanks to Grandma J for watching the girls, they think it is so much fun when she takes care of them.
Ill write more later....
Love,
Kim
Monday, October 9, 2006 1:35 PM CDT Hi Everyone,
Just a mini-update...I am hoping to talk to the doctor soon, and then I will have more of an idea about how we will proceed.
We noticed that Andrew has been walking on his toes and having foot drop quite a bit (you can hear feet slapping against the ground when he walks.) This is a common side effect,and was severe during his first 2 years of treatment, but it has gotten much better, and he has gotten much stronger, and I really didnt notice that it had developed again until recently.
He saw the physical therapist today, and she said that it was quite severe and she was concerned that his muscled will get "stuck" that way (I forget the clinical term she used.) The interesting thing that we noticed, is that typically (and this is true with Andrew before)...the kids are so weak, that they do a little toe walking and limit their activities due to strength. Andrew, however, has really gotten stronger this past year or two, and so now, he has the strength/stamina to push himself, and the issue seems to be that he is overdoing it.
He overdoes it so much, that this week, he can not stand, and if he does, he is crying and having to be high, high up on his tippy toes. The PT remarked, that she has never seen anyone do 5 laps around the 3rd floor, all the while on their tippy toes. She said this would certainly cause the extreme spasms that he is experiencing.
His hands/arms are also very tight, and along with his feet, she was not even able to stretch them.
I called my friend Lori, who used to be a PT here at CHOC (and is very familiar with the chemos and their effects)...she also knows Andrew and her son attended Andrew's school last year...so she knows the campus, etc.
She really believes, and I do too, that Andrew is not the type to "sit out"...he enjoys the social interaction far too much, and is inclined to push himself to keep up. She also knows the famous "climbing dome" at his school, and said that even playing on that for a short amount of time, would be too much for Andrew physically.
so many of Andrew's peers with cancer develop some social shyness or isolation,and we are thankful that he has not suffered in this way. Unfortunately, his desire to be with friends may be causing him to push himself too much.
Lori thinks that just walking to his class, to the playground, etc. for a full day, would be enough to overdue his damaged muscles, sending him into spasms, and creating this nasty cycle that has brought him to this point with muscle tightness/spasms.
His medical team and PT does not want him to leave school....so we are going to look at options (muscle relaxers, physical interventions, etc.) to help him get through his days. The PT is recommending therapy 3x a week at this point...we will see how to work that in.
I will be meeting with the doctor soon...so hopefully will have some answers.
On the fever front...his last fever was yesterday afternoon.....although he has a rash and swollen eyes....so, not sure when we will go home, but please pray that it is soon....I get so behind with life when I am here, not to mention, that I really miss our family being together...andt his is a lot of pressure on Doug.
Thanks to Grandma J for watching the girls, they think it is so much fun when she takes care of them.
Ill write more later....
Love,
Kim
Friday, October 6, 2006 10:17 PM CDT Hi Everyone,
Thanks for checking in and praying for Andrew.
He did the 2nd MRI with contrast, and it showed, NOTHING! So, that is good, but on some level it is frustrating. The neurologist will come talk about options of pain management tomorrow. Our oncologists think it is probably just the steroids (makes the bones ache, strips the muscles), or the vincristine (damages nerve endings, tightens tendons, and is the original source of his painful neuropathy). We may just change the neuropathy meds (neurontin)...or add new pain management meds.....Im hoping the neurologist has some good ideas.
And....his fever has spiked back up and his viral rash has returned! UGH! He remains on the high doses of antibiotics and antiviral meds, as well as the fentanyl for pain. He is terribly cranky, crying and yelling at us quite a bit. It feels awful not to be able to make him feel better.
On the homefront, Dad is doing great with the girls. Thanks to Christine's school, Mission Viejo Christian Preschool, for allowing Christine to attend on Thurs (she typically goes m-w-f). She loves school and it was nice to be able to have her in their loving hands on Thurs.
Daddy worked from home part day on Thurs, and brought Elise with him to work part day. Thanks to the gals in the office for giving her lots of hugs. Today, Grandma J watched Elise. The kids always love to be with their grandma.
Elise did well with the formula on Thursday, and thanks to the "milking station" on the 4th floor of CHOC, I was able to give Daddy a lot of milk for her to drink while Im away. She did just fine with a bottle. It reminds me so much of when Andrew was first diagnosed, and Christine was only 6 months old. We had to get to the hospital with Andrew asap, and our neighbor took Christine, and went and bought bottles and formulas...we were gone for over a week, and Christine adapted so well....Elise is adapting nicely too. I am lucky that my kids are so flexible.
Thanks for your continued prayers, they are more valuable than gold to us!
love,
Kim
Friday, October 6, 2006 4:07 PM CDT Just another quick update....
We did get the MRI last night at around midnight! Andrew continues to amaze me (and everyone else)...as he did the MRI without sedation, laying still for nearly an hour in the big, noisy, donut-looking machine.
Today, they determined that they wanted another MRI with contrast, to get a better view of his blood vessels. One theory to his pain, is mini-blood clots in the vessels, which cause areas of necrosis...this condition (which can happen from the chemo) is very painful. So, we are told that depending on the outcome of this MRI, we will either consult with the neurologist or the orthopaedic doctor, to try to remedy the situation.
Im not sure if we are going home today or not...also, Andrew has had a low grade fever today, please pray that it goes down and doesnt spike again.
As much as we cant stand being here, we do enjoy reconnecting with dear friends, and making new ones...so many kids who need our prayers. We are also reminded of some of our "angel" friends...pictures and art work cover the walls of the play room and halls, bringing back memories of friends that we miss....TJ, Omar, John and Gregory.....pictures of them smiling and bravely battling....now, undoubtedly, gathered around the Oreo Cookie House in Heaven. It makes me so grateful for how well Andrew has progressed, how he has overcome the difficult days when this floor was like our home.
Ill update more later....
thanks for your messages and prayers!
Love,
Kim
Thursday, October 5, 2006 11:38 PM CDT Hi Everyone,
Thank you so much for the caring messages in the guestbook, phone calls and emails. It really is appreciated and lifts our spirits!
I wanted to wait until the "end of the day" to write, but we are still waiting for our MRI!! When you are inpatient, they keep pushing you to the back of that pack, getting all the walk-ins and emergencies in first.
I want you to know that your prayers worked wonderfully, as Andrew's fever and virus have virtually disappeared. He began with a 41 celcius fever, and started getting spots on his face. We brought him to the clinic, and while we were there the spots began to spread and fester into blisters!! I had to separate Elise and Christine from Andrew while we were at the clinic (separated Andrew from everyone!) ...silver lining, fevers, rashes and blisters get you the "private room" privilege, which all my cancer mom friends can attest....makes the world of difference when you are here!
They put Andrew on IV antibiotics and IV antiviral meds, and it really did the trick on his viral rash/blisters. YOu cant even see them today. This is amazing, because usually, a minor virus just explodes on Andrew...and he gets it 10 times worse than the average person. So the fact that this went away, and didnt drag out to a 10 day thing is wonderful...thank you for your prayers!!
The doctors have some different theories re: his leg pains, and they want to do the MRI and then talk to the neurologist tomorrow. So, we are hoping to get this MRI done before the sun rises......
Ill write more later...but I just wanted to update re: the fever and viral issue.
love,
Kim
Wednesday, October 4, 2006 9:58 PM CDT Hi Everyone,
Thanks for checking on Andrew. He was having some bone pain again today, and despite trying to convince him that he would feel better to stay at school and be distracted by pretty girls and crafts (and science camp!) he really wanted to come home. Shortly after coming home, he developed a high fever...sooooooo who can guess where we are tonight??????
It's been a while since we have been in the hospital...the nurses are surprised to see Andrew with some meat on his bones and some hair on his head. Still the talkative boy though.
We also have our friend Amy a couple rooms down from us. Amy was diagnosed two months after Andrew. She relapsed about a year or so ago, and had a transplant. Sadly, despite doing well with her transplant for 7 months, she has relapsed again, and isnt feeling well. Her parents love her so much and want to do all they can for her, but Amy isnt sure she wants to keep trying. It was so sad, because she told her mom that she doesnt have a good life anyways (cant go to school, 3 years of cancer treatment, etc.)....please pray for Amy and her family!
An update on the CRIMBINEL......now, if you called your cell phone, and a man picked up, you would think he stole your phone, right??? Well, I spent a good part of yesterday calling Cingular, trying to get my phone turned off, number transfered, etc. etc. Finally, in the evening, Doug went and got me a new phone, blah blah blah. The Cingular guy mentioned, that they had been having problems with the phones...but didnt press the issue.
So, today.....what a surprise, when I find my phone!! As it turns out, Cingulars tech problem, was the you would call one number, but get someone else. I guess that is what happened to my phone.....so, no crimbinel!
Please pray that Andrew is able to feel better soon. They are doing an MRI tomorrow of his legs, to double check for the source of his pain. They are putting him on fentanyl tonight to help with the pain, please pray for his comfort. Also, pray that whatever virus is causing his fever will run it's course quickly.
This is the first time I will be away from Elise. She has never had a bottle, so pray that Doug is able to have good luck feeding her formula - and that we can all be together soon.
love,
Kim
Tuesday, October 3, 2006 10:45 PM CDT Hi Everyone,
Well, let me get the riff raff out of the way up front....our family "had a C-R-I-M-B-I-N-E-L"...Andrew told this (spelling it out) to everyone he saw today (and since we went to the clinic and the hospital, we saw LOTS Of folk). He spent all day obsessing over it, asking if "this is the first crimbinel our family has had" since he was born, and even wondering, "will they talk about the crimbinel stealing your cell phone on the news tonight?"
Yes, that's right, my cell phone was stolen. It was a dramatic realization this morning, when I did the usual calling of my cell phone via the house phone, while the kids searched hi and lo for my ring tone. It's kind of like an Easter Egg hunt, only more entertaining, because I hae a cool (INXS Pretty Vegas) ringtone. There's no chocolate, but otherwise a fun game of finding my phone. Today, however, we never heard the song.....and instead, A MAN ANSWERED MY PHONE WHEN I CALLED!!!!
So, long story short, we had a crimbinel steal my phone (out of my car last night???) and it was a great talking poit for Andrew and Christine.
This drama, is not to be confused with the flat tire I had yesterday, or the dead battery I had on Friday.....or the fact that Elise had a major diarrhea explosion at Bridgestone Firestone, while I was waiting for my tire (and wouldnt you know, the other 3 were badly cracked, and my brakes were worn down.....)
Other than all of that...things have been relatively calm.
Now on to things that matter: We went to clinic today, and Andrew's counts are holding steady (1800 ANC). I grilled Dr. Torno about relapse rates and statistics..."What are the rates for kids that are on reduced chemo for 6 months?" etc. etc. And the answer, as usual.....is a big WHO KNOWS???? The frustrating thing about cancer and chemo (especially with kids)...is it is all a big giant crap shoot. IT's all experimental, and every 5 years or so they tweek things, hoping to get better survival rates ....and also finding out what side effects are showing up from previous studies...but all in all, they really dont have a clue about what chemo's work for which types of leukemia, or how this will all effect Andrew down the road.
Dr. Torno knows that I am internally freaked out by Andrew's reduced chemo....so she agreed to increase one of his chemos to the 75 percent range and keep the other at 50 percent. Honestly, there isnt much left to his time on treatment, and the fact that he hasnt gotten all of his chemo is a situation we cant change. We just pray that every last cancer cell has been killed off.
I also asked her, how do we know the healthy t-cells wont start going bonkers again (since we dont know why they went bonkers to begin with, and it could be something that is now set in his genetics, that cant be fixed.)...well, we dont know....understanding the damaged genes and how they work is what the new studies are looking at....(ok, so , missed that boat)
We also discussed the pain in his legs. Could be damage to his muscles from the steroids. Could be mini blood clots that happen from the chemo that are very painful. Could be AVN (avascular necrosis) killing off his joints. Could be fractures from the osteopenia (thinned bones)....we will do MRI's to give us some more information...although, that wont happen until the insurance approves the tests, and since the insurance we thought we were getting October 1 hasnt materialized....(that is a WHOLE nother rant, that I am gonna try to avoid....) we are going to have to wait until November 1st (hopefully) so that we are covered, so we can get the MRI's.
Hmmm....this is turning into quite a negative post.
Good news. Christine had fun with Grandma J this weekend. Andrew had fun with Grandma J at Grandparents Day on Monday.
Also, Andrew starts Science camp ...every Wednesday after school. The first 6 week series is for "aspiring doctors" and is called "guts"...I bet he does well, and maybe informs the teacher a thing or two about blood and bones, HA HA!
By the way, HELLO to the lurkers that signed the guestbook.....nice to see you all! Any one else?? Dont be shy.....as Andrew nears the end of his journey, it is nice to see who is out there cheering him on....
Finally...I came across the funniest thing....have you ever got one of those "nigerian bank scam" emails? There is a gal that has a lot of fun writing back to those scammers....pretending she is going to send them money, but having a lot of fun at their expense in the meantime....go to her site (it's a horse site) but look on the links under "con man" and you will see some funny stuff.... scam artist humor
love,
Kim
Saturday, September 30, 2006 0:49 AM CDT Hi Everyone,
Tonight, Christine is having a special "girls night" with Grandma J. She has been enjoying school and making new friends. Having alone time with her grandma should be a lot of fun....it is great to see her growing into her own little person, independent from her big brother.
Andrew is doing fine. His bone pain was pretty bad last night, and I had to give him some codeine to ease the pain. His doctor suggested that we do some tests, and MRIs to check for avascular necrosis or fractures. She also wanted to look at how his counts have been the past month...since bone pain is a symptom of relapse. Typically, if this were the case, we would see a rapid increase in his white cells and drop in platelets and hemoglobin, and that hasnt been the case, so I am pretty sure that the cancer is still in check.
It's hard to really pinpoint the cause, since his meds do such damage to his bones, muscles and nerve endings...he is on meds for the nerve pain (which feels like bone pain, since it is all the nerve endings)....but he has also lost quite a bit of bone mass, which makes him susceptible to fractures and they want to rule them out. Also, the chemo cuts off blood supply to the bones and there is a relatively high incidence of bone death (necrosis)...this would also cause pain. We have an appt on Tuesday and we will talk to the doctor about looking into the pain at that time. Please pray that it is just temporary side effects from treatment and nothing more serious.
Andrew did well at his chapel assembly...he recited his line perfectly:
We have been learning that God made the green grass, the trees and flowers, the yummy fruit and all the different animals for us to enjoy. The Bible says in Hebrews 11:1 that Faith means being sure of the things we hope for.
He read the whole thing, and I was so proud of him. Before the reading, the kids sang songs, and it was very touching to watch him as he sang, "Jesus is making me stronger" as we have seen that happen over the past 2 years, and we pray that God continues His good work in Andrew.
Tomorrow is soccer...... Go Blue Thunder!
Thanks for checking up on Andrew and for your faithful prayers....and for those of you that have confessed to lurking lately.....dont be shy, leave a message :)
Love,
Kim
Wednesday, September 27, 2006 10:27 PM CDT Hi Everyone,
I thought since this was Andrew's website, and he has been interested in writing lately (creating books is his latest hobby), that I would let him contribute to this entry....so here he is;
ive maid books ilikethe hunt book that im making ilike inschool recess is fun becus we climb and becus we go down the slide thanks for praying for me love andrew
There you have it......and honestly, I dont know how he knows how to spell school or climb....he has just developed such a knack with reading/writing lately, Im so proud of him.
He has been feeling better. He was able to stay in school all day today and yesterday, although yesterday he slept during rest time and through science.
Baby Elise is doing well, giving me more sleep, which I appreciate. She is beginning to smile so much and make eye contact with all of us. The kids are enjoying her! I have a new picture that I took last night - it's in the photo section, she is so cute and smiley.
Thanks for keeping us in your prayers!
Love,
Kim
Monday, September 25, 2006 10:10 PM CDT Hi Everyone,
We just returned from our delicious dinner at Chili's. I wanted to do all I could for the search for the cure, so I contributed a bit extra, by having my FAVORITE dessert; the molten chocolate lave cake! Yummy!
When I picked Andrew up at school today, his teacher was concerned that he complained today of back pain and feeling tired. We discussed his physical/education/social needs a bit. Would it be better if he only went part day? Should he be homeschooled? The teacher was very kind to wonder if it was just too much for his tired and pained body to handle school each day.
This is something that Doug and I have thought about a lot. It is an issue that most cancer families face, on many levels. We have prayed, talked to the doctors, read the cancer books - and all agree that it is best for the kids to stay in school as much as possible, and allowed to have breaks and accomodations as they need (limited PE, rest times, extra water, etc.)
If I thought letting Andrew stay home would help, I would do it in a heart beat. Truth is, he would just feel miserable at home, and going to school, having a purpose, meeting friends, and learning new things all help to boost his spirits. So many cancer kids deal with social issues, mainly because their first years are spent in isolation - betting bone marrow aspirates instead of going to birthday parties, and conversing more with oncologists than same-age friends.
I wish we didnt have this issue. It is really hard to watch your little kid suffer so much. I love to see him running around, like he did today at soccer. Even though he needed a lot of rest breaks, he enjoyed his time on the field. As his mom, I have been there when the pain was so bad he needed morphine, I hear him crying at night that his legs hurt, I remember the days where all he did was sleep -only waking up to vomit.
I am so thankful that these days are coming to an end. The poor kid has been at this since he was 2, for more than 3 years now, and he doesnt even remember what it is like to feel good. He only has 2 more months to go; one more spinal, one more bone marrow aspirate, 9 more pokes in his port, 2 more infusions, 1 more surgery, and 422 pills left to take.
I pray that the yummy chocolate cake I ate will help push research over the hill, enough to finally find the cure!
Love,
Kim
Saturday, September 23, 2006 5:48 PM CDT EAT AT CHILIS THIS MONDAY
Chili's Restaurants will donate 100 percent of their proceeds to ST. Judes Research Hospitals cancer research, when you eat there this Monday, September 25th.
St. Jude's is the doing cutting edge research, pushing us closer to the cure of pediatric cancers. It doesnt matter where a child is treated, undoubtedly their treatment plan is a result of St. Judes research.
This is a great reason to treat yourself to a night out, and I HIGHLY recommend the MOLTEN LAVA CAKE :)
Hi Everyone,
Thanks for checking in on Andrew and for your prayers. His chemo really wore him out this week, and his bone pain has been stronger than usual. He has stayed in a relatively good mood, despite the pain (and lets not forget the steroids)....
Those of you that read these updates know that Andrew is still on chemo...although I still here on a fairly regular basis, that friends are surprised that he is still on treatment. People comment often, "I thought he finished a while ago!" and then there is the "but he has his hair!"
His chemo schedule includes;
6mp everyday
methotrexate once a week
vincristine once a month
prednisone first week of the month
He also is still getting his spinal taps of methotrexate
This is the first week of his chemo month...so he had all 4 chemos in his system, and the prednisone and vincristine in particular cause bone pain and nerve ending pain. He does take neurontin for these, but it just wasnt enough this week.
On Thursday, I got a call from the school, that Andrew had fallen and wasnt feeling well. As it turned out, he fell off that climbing dome - hitting his mouth area on a bar, and scruffing his face up in the woodchips below. After a rest in "sick bay" (one of Andrew's new vocabulary words, showing that he is now a grown up kid in school) he still was feeling yucky, so I came and picked him up. As a side note, I discussed his climbing with his teacher....he dose have very fragile bones (thanks to treatment thinning them) and she was concerned with his climbing. Doug and I feel comfortable letting Andrew climb, because he tends to not do things if he feels weak....but we left if up to the school, to set parameters that they are comfortable with...so for now, Andrew is only allowed to climb up 3 bars - not go to the top. He is a bit sad, but ultimately fine with this, because he knows that he is getting stronger and one day will be able to climb to the top again.
On Friday, I got a call again, as his legs were hurting and he wasnt feeling well. I went and picked him up from sick bay again.
He kept crying when we got home, saying his bones didnt feel right and he needed to go to the hospital. I feel so bad for him, because I know he just lives life feeling less than 100 percent, and he is very brave about all of his aches and pains, so when they get the best of him, it really makes me sad.
Today, he had soccer....he didnt want to play much, because of his leg pain....but has complained less than yesterday.
Please pray that he gets some relief soon.....and also that this issue goes away when he finishes treatment. It is still unclear if his pain and neuropathy will be temporary or permanent - it's a wait and see kinda thing.
One the more upbeat side of things.....Andrew's class is going to be speaking at chapel (at school) this week. He was given a line to memorize (about 30 words or so). His teacher asked if he would be able to do it, since the other kids were given their lines last week...and Andrew didnt get his until late this week (due to being out sick, and now not feeling well)...I told her I was pretty sure he could do it. I said, "if he cant memorize it, can he read it?" she said he could if he was able to read it....(he picked it up and read it with no problems ...he has become an amazing reader...everybook I give him, he just reads it, not missing a beat!)...anyways....
So, after his teacher shared her concerns on Friday morning...she sent him home with a note Friday afternoon when I picked him up....it said that he was doing such a great job with memorizing his lines, that they wanted to add more to it!!
I was so proud to hear that! Even when he is not feeling well, he still continues to amaze me with his efforts and abilities. I cant wait to hear him at chapel this week, and will try to videotape it (and post it up here)
I hope you all have a great weekend...
love,
Kim
PS. Christine and I are still dealing with heavy coughs, please pray they clear up soon.
PPS. I spoke too soon about his mood, he is down stairs in full roid-rage fashion right now....screaming his head off!
Wednesday, September 20, 2006 0:52 AM CDT Hi Everyone,
well....camp Sprague was fun for the kids....who, despite my efforts, came up to give me lots of kisses...so, yes, then I got sick. Poor Baby Elise got the sniffles, and it is sad when she starts to cry because she cant breathe....we are praying that it all passes soon.
Andrew is feeling much better. He went in for chemo today and I didnt hear back about his blood counts. We are hoping that his counts will improve enough to increase his chemo, but honestly, with this latest virus, chances are his counts dropped. I will call tomorrow and see what they are....the poor nurses were so busy today, Im sure they just never got a chance to call me back.
Anyways, Andrew will return to school tomorrow. He still has his cough, but one of his chemos (methotrexate) gives him coughs (combined with the fact that his body takes a long time to recover from viruses- as evidenced by the fact that it still hasnt recovered from 'hand,foot and mouth' in May)...so I doubt his cough will go away anytime soon....but the doctors cleared him to return to school, and he is feeling much better.
We are otherwise all doing well. I put up some new pictures.....Christine on her first day of school....she is just loving it! Andrew on the climbing dome at school....he is so proud of himself....and as I have reflected on how far he has come in this area...I am reminded of not that long ago, when he would cry withing 6ft of the landing of our stairs -he felt so weak and unstable, that he was afraid to be near the stairs. I also remember times when Christine would toddle across the bridge on our neighborhood playground equipment, and Andrew would avoid it, or cry if he was near it....he is so much stronger and really regaining his gross motor skills back!!
Thanks for all of your prayers....going to the clinic today was a reminder, that we have fared well....we are fortunate, and God has shown great Mercy to Andrew. Please continue to pray for his healing and protection.
Love,
Kim
Friday, September 15, 2006 8:37 AM CDT ***SATURDAY EVENING UPDATE*** The kids are taking well to CAMP SPRAGUE...although they have overrun the entire downstairs (not just the playroom)...so Baby Elise and I have been stuck upstairs (dont want to bring her down and expose her to germs.)
Andrew has flirted with going to the hospital all day. He has had a fever off and on, and came within .2 degrees of needing to be admitted. He threw up a bit and hasnt been feeling well....we are praying that in the morning he is better. Please pray that his body is able to fight this quickly, and that we can avoid going inpatient.
love - Kim
Well.....The kids have been so excited for camp, and we are all packed...and Andrew came into our room at 3:00am with a croupy cough/sore throat/cough. That pretty much ixnays camp for him....for his own good and that of fellow campers - some still in the heat of their battle with cancer.
I told Doug that it's only fair that he still go with Christine, she has been just as excited as Andrew, and just because he cant go, shouldnt stop her. Then she came in the room at 6:00 am with a stuffy nose.
Now, I have two, snuffly, kids...one that sounds like a seal, crying and sobbing because they cant go to camp.
Luckily, they have a great dad, and he has vowed to turn the playroom into CAMP SPRAGUE for the weekend (also a great way to keep the kids away from the baby.)
I had picked up some kits from Home Depot, for the kids to make a pencil box. I had also picked up some pickling cucumbers....both will become craft activities today that the kids can do with dad. They will also throw down their sleeping bags in the playroom tonight for that special "camp" touch.
Please pray that they get over these coughs quickly. As you know, for Andrew, it doesnt take much to turn into a hospital stay, so pray for no fevers and a quick recovery. Also, please pray that the baby (and I) stay protected - she is too little for a cough.
Also, please keep our friend Alonzo in your prayers. We met when he had bone cancer in his leg....which then spread to his lungs. His mom said that the experimental trial they did in NY didnt work - and in fact the tumors in his lungs have "grown like crazy" while on the NY trial. He really needs a miracle!! He doesnt have a webpage...but please ask God to heal him. He is on a new chemo now, and I am praying that it kills off the tumors.
I still have those new pics to put up...will try to get them up today.
Have a good weekend...
love,
Kim
Wednesday, September 13, 2006 0:33 AM CDT Hi Everyone,
Short version tonight, because Im too tired to type....although, tired doesnt mean I get to sleep, as my tiniest princess is up every 2-3 hours. She is getting so cute, more alert, smiling.....just praying that she sleeps more soon.
Andrew went to clinic today....his blood counts are similar to last week (anc is around 1100, I forget the exact number)...in any event, we are keeping him at his 50 percent dosing on his chemo.
Big hoopla tonight, as Andrew lost tooth #2 (the one that really was loose)....for the record, the bottom two teeth are now gone, and he has a cute lisp. He has been taking a survey from other kids, asking what the tooth fairy brings....someone in his class said they got $100 (I dont think so!)...some get toys....I told him it's not up to me what the tooth fairy brings people. He was happy with his $1 and cute little note, written by dad in the most swirly cursive ever!
Christine has school again tomorrow (she goes m-w-f)...when I picked her up Monday she was upset, as she wanted to stay longer! She also has let me know that I dont pack a good lunch, the other kids get gummies and lunchables! Peer influences have already begun!
The kids are going to Cancer Camp this weekend with OCF-OCF. They are very excited. It will be just the kids and dad, so the baby and I can get some rest (but since the baby is the one that is up all night, not sure how getting rid of dad and the kids is going to help my sleep///????) They will all have a blast, and are already excited and worked up about going.
Please say extra prayers for the family of Nicholas , as he went to be with Jesus yesterday. They spent the last months enjoying a life time of fun experiences. I pray that God uses those memories to overshadow the pain of missing him. Please let them know you are praying for them, as they travel back to NY to say their earthly goodbyes to their smiling son.
I have new pics of the kids, will try to get them up tomorrow.
Thanks for your continued support.....
love,
Kim
Sunday, September 10, 2006 11:47 PM CDT We had a great weekend!
On Friday, Christine went and met her new teacher. She immediately took to her new classroom, which is filled with fun stuff (play kitchen, dress up, book corner) She is so excited to head off to school tomorrow, and we couldnt be prouder of the wonderful little girl that she has become.
Saturday was opening day for soccer. Andrew is on Blue Thunder....coached by dad. We had pictures at 7:30am (go ahead and imagine the morning we had, getting everyone up and dressed -and baby fed- to get to the field by that early hour.) Later that morning, Andrew had his first game of the season. The boys all did great, and I was thrilled to see Andrew running around on the field. Last year, he would go on the field for a minute or two, and then come and lay down on the sidelines. He has so much more energy this year, it was truly a blessing to watch him. I can only imagine how much more he will improve next year, when he can play without chemo in his body!
Today, we attended the CHOC Survivor Day for cancer survivors. When we got up this morning, Andrew asked why we werent going to church...Doug told him that the survivor party was early in the morning, at the same time as church, and we were going to the party. Andrew was disappointed and said, "But I want to praise the Lord."
I enjoyed being able to explain to Andrew, that going to survivor day is an amazing way to praise the Lord! Going and seeing all of our friends who God has helped with their cancer, is a great way to thank Him. It is also a way to thank Him for helping Andrew get better too. It really should be called a "Praise the Lord" party!
The Survivors Party was held at our Discovery Science Center, and Andrew and Christine had a blast. They went their recently with Grandma J, and were excited to go back and play. I enjoyed seeing the mothers that I bonded with during our 94 nights in the hospital and hundreds more days at the clinic. It was great to reminsce about old times, and even greater to see kids looking so much healthier and robust. I meant to take pictures, but didnt get around to it....but I look forward to seeing these families each year, and watch what God will do in the lives of their amazing children. Kimberly, Baby Sammy, Andrew (aka Darth Vadar), Michael, Zachary, Sam, Sarah, and so many more....we do thank God for what He has done in your lives!!
It was bittersweet, because there are friends that should have been there...who are now in Heaven. A reminder that we are lucky to be doing well....and that a lot more still needs to be done to find the cause and cure of pediatric cancers. I have a picture in the photo section which speaks volumes...you can see how far Andrew has come, and why we are so thankful....and in the background, is our friend Gregory, now running the streets of Heaven.
In the car, on the way to the party.....Andrew began screaming....he had a mouth full of blood and was missing a tooth!! He was frightened, but I was so happy, as he had finally lost his loose tooth. Upon further inspection, I realized that his loose tooth was still in his mouth, and he had somehow pulled out the one next to it...which was also a tad loose, but not ready to come out! Eventually, everyone calmed down, and Andrew proudly showed off the new gap in his smile to everyone at the party.
So, tonight, is the big tooth fairy visit....Andrew had to write her a note, since we lost the tooth in the car. He is concerned that he might get a paper cut from the note under his pillow, or that he is going to wrinkle it by sleeping on it (I explained that the tooth fairy is used to wrinkled notes....)
As I sign off, I want to remember the many families that lost loved ones on 9/11. I also want to thank those that continue to protect our country and our world, helping to establish free democracies - making attacks like we saw on 9/11 less likely. May God comfort those that have lost a loved one, and protect those that still fight for us each day. A special prayer for my brother in law, John, currently serving in S. Korea.
Love,
Kim
Thursday, September 7, 2006 11:24 PM CDT Hi Everyone,
Andrew has been enjoying his first week of school. Each day, I ask him about his activities and what he enjoyed, and what I usually here is a detailed description of how he climbed the playground equipment. There is a giant half-sphere thingy and he is very proud of himself for being able to climb to the top, and to hang from it a bit. When I think of how far he has come physically.....and how 2 years ago he could barely go up our stairs....and knowing that he still has a lot of bone pain.....I am very proud of him too.
Christine and I have been enjoying "Girls Week" together....we got our nails done, took a trip to the mall to get her some new school clothes, baked some muffins.....she has really grown up and her personality blossoms more each day.
I might as well get it out now.....I am worried that Christine might not last in preschool.....
I think I mentioned that she doesnt like to take time out from the fun in life to go potty....heck, who can blame her, but most of us also dont like the feel of potty in our pants, or the embarassment, or having to go home early from fun activities to change.....and Im hoping those consequences start to sink in with her....
Last Friday, at Andrew's "meet the teacher" day....afterwards, the kids really wanted to play on the new playground equipment (the above mentioned sphere). I thought I would be a nice mom, and said, "sure, but just for a bit, as it's hot out here" (try 100+ degrees!). I slowly got the baby in the car (leaving all doors open of course), folded up the stroller and tried to cram it into the back of the van while soccer goal nets and miscellaneous items spilled onto the blacktop.....when I finally had everything together, I hollered for the kids to get in the car. "Coming mom!" Andrew yelled.... I felt very much in control of life, for the first time in a long time, probably in part to Andrew's obedient response instead of a crying tantrum about wanting to stay and play....anyhoo....so he is getting in the car, and Christine is still on the playground, "let's go Christine" I yell.....and she, (deep breath) grabs her bottom and says, "I have to go poop!"
Well, I know I just cant unstrap the baby from the car seat quick enough, so I tell Christine to hurry and take herself potty (she is more than able, when she is willing)....and as she starts to trot, with her hand grabbing her bottom, I see a blob of poop drop to the blacktop floor. It was slow motion, falling....sliding against her leg on the way down....and smack onto the searing hot tar.
I was hoping that the earth would open up and swallow me. It was way too hot out for this whole thing! I grabbed some wipes, cleaned her up (another pair of new Hello Kitty panties in the trash can!) and quickly headed home. (Maybe someone was praying for me at that moment, because the clean up was quicker and easier than I anticipated.)
On the way home, I lectured Christine, about going potty when she feels it, even when it means stopping whatever fun activity she was doing.
That obviously went unheard.
Earlier this week. We were swimming at the neighbors house. I was proud of my little swimmers, and Christine in particular would go back and forth, with her big arms and kickers, all on her own. I said on the edge, holding Elise, talking to my neighbor, while our 4 kids swam.
Christine walks up to me with THAT LOOK on her face, and begins to say something about, "I tried to get out fast to go to the potty...." "Get out!" I firmly told her.....GET OUT GET OUT GET OUT. I couuld just imagine floaters, or leg sliders in our neighbors pool....I wanted her out before things got OUT, if you know what I mean.
She began crying, my neighbor felt bad for her and told her it was ok. Thankfully, all was contained in her suit, and I took her home (ok, had to count '1-2-3' over and over again, as she screamed hysterically that she wanted to stay....)
Eventually, we got home, did the hose-off in the yard, and she put dry clothes on. We went back to the neighbors, and she did not swim.
I am really hoping she gets the message.
I would love to blame her behavior on the baby, or school anxiety, or something other than her own laziness....but I cant. She just does not like taking a potty break when she is having fun.
I imagine there will be lots of new and exciting toys, friends and activities at school........hopefully she will not get too carried away - Ill keep you posted.
And, just one final bit of DRAMA.....
The other night, I came upstairs and locked the house. Specifically, I remembered dead bolting our front door.
At 4am, while feeding Elise, Doug and I both noticed that our bedroom sliding glass door was partially open - definitely not how we keep it. We wrote it off, thinking the kids had played with it.
Then he went to check on the kids. As soon as he walked out of our bedroom, he looked down stairs and said to me, "our front door is wide open."
My heart dropped! I had him get me the phone (Im still tethered to Elise on the bed, if I stop feeding, she will cry, and alert the intruder)....
I called 911 and things went from there...they sent out a few officers, who searched the outside perimeter with lights, and it was when things were in full swing, that Doug says, "I did go back outside last night, to get something out of the car." :%
Still on the line with the dispatcher, who is in communication with the commando cops searching our bushes ...I tell her that I now think, that my husband left the door open.
The cops came in anyways, and we all felt that things were clear...there was no sign of forced entry.....
Just another day in the life here...waiting for things to get "normal" and wondering if this IS normal????
Hope you are all doing well.....
love,
Kim
Wednesday, September 6, 2006 0:32 AM CDT Hi Everyone,
Well, Andrew is officially a KINDERGARTNER. Im sure all of you that have followed Andrew's journey know that these rights of passage are especially heartwarming to us. We are thankful that God has allowed Andrew to grow up to see this day, and to be doing well.
We cant help but be sad for our friends that are struggling, or who have already gone to heaven....we know days like "the first day of the school year" are hard for their parents, and it makes us so much more appreciative that God has given us this day with Andrew. It's not because we have prayed more, or loved Andrew more...it is because God has given us abundant mercy!
The day started with a trip to the clinic.....we tried to go as early as possible, so that Andrew would not miss much of this important day. We were able to jam home just in time for snack at 10:00...not too bad!
Andrew said he had fun, and talked about the friends he made. I put in some pictures of his day.....Due to the late drop off, there wasnt much fanfare, but I did get a picture of him with his new teacher as I dropped him off at the door.
Christine starts her school next week, and so we have decided that this is "Girls Week"....time for her and I to do some fun stuff together (and Elise too.) Today we had some errands to run, and I made sure to get her a special little strawberry frappucino at our stop at Starbucks (a treat for her!)
Tomorrow we are getting our nails done, as she has let me know several times recently, that her "nails are ruined" ...some of her flowers and paint have chipped off from her last pedicure - OH NO!
She has had two recent incidents that may very well end her preschool career.....I may write about them later, I am currently just trying to block them out of my mind and pretend they didnt happen.....
Thanks for your prayers....Andrew's ability to go to school - reading and doing math - is a result of God's healing, and I thank each of you for bringing Andrew before the Lord these past 3 years.
Please continue to pray....his blood work came back this afternoon (ANC 1026) and they are not increasing his chemo, but keeping it at 50 percent dosing. We would like him to go back up to his regular treatment, so we can have the best chance at beating this beast.
love,
Kim
Monday, September 4, 2006 10:33 AM CDT Hi Friends,
I know that many of you have been praying for our friend, Cam , who went to Heaven this weekend. Please continue to pray for his family as they now must face their days without him here.
Cam was a strong boy, who loved Jesus. He went through all of his treatment, and 8 months after finishing his chemo, he relapsed. Once childhood leukemia relapses, the odds of survival drop considerably. Cam endured so much, he wanted to live. Recently, his doctor told him that it looked like the cancer had won this battle, and Cam told him, "no, it didnt!" Cam understood that our real promise is in Heaven, and nothing, not even cancer can take that away.
One of my dear, prayerful friends was sharing something that I think we all feel....the disappointment when we pray for healing, in fact thousands of us were praying that for Cam, and yet God didnt heal him on earth...it makes you wonder the value of our prayers.
Besides the physical healing of Cam, I know that our prayers were for strength and peace - for him and his entire family.
I can tell you, that no family can endure this journey without the prayers of others to hold them up.
The Dalene Family has a strong faith in God. I am sure the enemy was hoping that this trial would shake their faith...but what a testimony, that despite all they went through, they still praise God. It was the prayers of so many that has allowed them to stay strong and faithful.
If you prayed for Cam, know that because you prayed, God gave Cam the bravery and strength to continue each day.....days that he felt so horrible, was in pain, was discouraged as his friends prepared for high school....days when he was lonely because of the isolation cancer patients face due to their low immune system, days when Cam felt scared as death chased him down...God heard your prayers, and made the years of this battle bearable for Cam.
For those of you that have prayed for Cam, and for us....thank you. Even when our prayers for earthly healing are not answered, I know that your prayers are what allows us to get up each day, hopeful, faithful, and confidant, that no matter what happens here on earth, our promise is in Heaven - as Christ has conquered death, and we will live together in eternity with Him.
On the Andrew front; He is doing fine, more bone pain than usual, but not enough to limit his play. Tomorrow is his first day of school - and he is very excited. He will go to the clinic in the morning, so will miss the first part of school, but I will hurry him back so that he can join right in with his new class asap.
Please pray that Andrew's counts are higher, so that we can move toward giving him more of his chemo. With only a few months left of treatment, we would like to give the cancer one more good punch - best done when Andrew is on 100 percent of his chemo.
We want to give a big congratulations to our friend and neighbor Bailey, as she finished her treatment recently. We pray that she remains in remission! Please pray the same for her.
Enjoy the holiday!
Love,
Kim
Friday, September 1, 2006 1:34 AM CDT Hi Everyone,
The kids had a fun week. It was their last classes for gymnastics, dance, swim and karate. School starts for Andrew next week, and tomorrow he will meet his new kindergarten teacher. He is very excited to meet her and to return to school. He loves learning and socializing....and the school environment lets him flourish at both.
I have some new pictures of the kids at the water park the other day, I will put them up in the morning.
And.....As you can see, we are approaching Andrew's off treatment day!! We are so thankful that God has allowed us to get through the past 3 years, and that Andrew is doing well.
CHOC recently started a "bravery beads" program....it is a way of recognizing and rewarding the kids for all that they go through. There are different beads that you collect on a string, different ones for different treatments, procedures, nights in the hospital, etc. Ideally, when you get, for example, a blood transfusion, you are given a bead. Since the program started recently, I have been going back through the journal and Andrew's medical chart, to add up the different "beads". Even though they arent being given as a 'reward' each time he earns them (since they are being collected after the fact), I still would like for him to have them as a momento, so when he grows up he will remember all that he bravely endured.
So, anyways.....As part of this project, I was counting the nights he slept in the hospital, 93! Not to mention countless long days in the hospital for treatment, transfusions, spinals taps, radiation, MRIs, Xrays, CT scans and 4 surgeries. It's amazing to be reminded of all that this little boy has gone through, and how well he is doing now!
As I counted the nights, I was reminded of all of you who prayed for Andrew...providing healing and strength. Thank you to those of you that continue to pray for him. When we look back on this journey, we remember those of you that continue to remind us that you are with us.
I will tell you that there are few places as lonely as the oncology ward of a hospital. Of all the nights we spent, we had very few visitors. Our primary source of contact and support was the other families living out the same nightmare.
One of the people that was with me, quite a bit, was Theresa. Her son, Alonzo, was diagnosed the same time as Andrew, with a bone cancer (osteo sarcoma). Alonzo and Andrew have different types of cancer, but were given the same percentage of surviving. We spent so many of those 93 nights (and lots more days) in the hospital with Theresa and Alonzo.
Alonzo's treatment was much shorter than Andrew's, and he finished more than a year ago....but his cancer returned. He has not had much luck getting his cancer under control, and recently he began experimental treatments in New York. Today, Theresa told me that the new treatments werent working, and the doctors are not giving Alonzo much hope.
Please pray for Alonzo, who does not have a webpage. He is a teen, who just got his license and a car...and is too sick to drive it. Please pray that God uses the doctors to heal Alonzo!! We also appreciate that you continue to pray for our friends facing tough times; Nicholas and Cam who are praying for their miracle.
With each prayer for our friends, I also thank God for what He has done in Andrew! We feel very blessed, and dont want to forget the healing that He has done - faithfully believing He can do the same for our friends.
Love,
Kim
Monday, August 28, 2006 1:20 AM CDT Hi Everyone,
We had a nice weekend.
Thank you for the prayers for Andrew's leg and back pain. He is feeling much better. Please continue to pray for this area, as he is still on meds 3x a day for his bone pain, and this is a condition that could be life long. We pray that when he finishes his treatments that this side effect will remedy itself.
He wont be getting labs this week, as it is steroid week (so, prayers for some emotional stability are of course welcome.)..the steroids inflate the white blood count, so no sense checking his labs until they have left his system. Please continue to pray that his counts will rise. He has not been able to get all of his chemo since May, and with the high rate of relapse with his type of leukemia, we hate to see him off his full treatment for so long.
Thanks for your prayers re: our insurance issues...things are still up in the air, except that I am just ignoring it for the time being...too stressful to worry about. One praise, is that the manager of the Kaiser pharmacy called to apologize, as it was brought to his attention (yeah, they told him the mom keeps calling and getting mad)..that we often dont get Andrew's meds when we need them. He was very nice, and gave us the direct number to the pharmacist, so that the doctors can get the prescriptions directly to the pharmacist (they have been put on hold for more than an hour, or told to fax in the prescription, and then Kaiser says they never got it...)..so this should help alleviate that problem. (and thank you Abra for letting me know you "get this"....you are an amazing mom and your example of fighting for Gregory is always an inspiration! hugs to you!!)
The kids didnt have any poop problems this weekend....instead, we have the curse of dermalogical issues....Baby Elise's "baby acne" has arrived in full force, and she looks like a good candidate for infant Proactive. Christine has impetigo (contagious staff infection)..so we brought her in for some meds. Please pray that clears up quickly...it's not a big deal for her, but with Andrew's central line (port) a staff infection can be lethal to him.
A BIG Event is approaching....Grandma J is turning the big SIX-O. The kids spent Friday night, and helped make her a cake...Saturday we went to lunch and saw "Barnyard" (cute). The kids had a great time, as she spoiled them of course. I still remember when she turned the big THREE-0 and I told her she was "over the hill"...my how time flies!
I know there are many of you that check in specifically to find out how to pray for Andrew, and for his friends too. We have 3 dear friends that are clinging to their faith right now, and they are asking all to pray with them.... Cam and Baby D are praying for God's healing and Nicholas is spending his last days creating great memories with his family.
Please, pray for them. There has been great strides in childhood cancer treatments in the past decade, but many children are still dying, please pray for them.
This is Andrew's last week of summer :) to all of you going back to school...enjoy.
Love,
Kim
Thursday, August 24, 2006 11:52 PM CDT Hi Everyone,
Since we are now entering Thursday and Friday....Ill be honest and tell you that Wednesday was a crappy day, literally!
Andrew woke at the crack of dawn, screaming that his legs hurt and he couldnt walk. He was in a lot of pain, couldnt dress himself, etc. I called the doctor who told us to bring him into clinic.
Just an FYI, going to clinic is not an easy deal these days...with Elise feeding every two hours, and with the clinic being almost an hour away....and always a good hour in the waiting room (if not more)....it's just hard to juggle her needs, along with the kids.....
I asked the doctor, "are they just going to look at him and tell me, 'yeah, his legs hurt, keep an eye on them?'....cause if that's all, we probably would prefer not to go to the clinic." She assured me that we should bring him in.
So...we all pack up....off we go, Andrew is crying in pain.....cant even get himself into the car.....we are keeping him on tylenol with codeine round the clock to help.....
We get to the clinic, and when we are finally seen...he is running around (albeit in pain and with some limitations)....but, mobile enough that I felt like a muncheusen's mom bringing him in.
The doctor gave him a neurological assessment, and then said, "it can be so many things (all side effects of chemo)...so just keep an eye on him." uh....ok.
Once home, the baby and I fell asleep on the couch, and the next thing I know, Andrew is screaming that Christine has pooped. (yes, that would be my 3.5 year old daughter) I opened my eyes, and tried to do some of that astral projection that was so popular during the "new age" movement - I just wanted to escape the whole situation...but sadly, It didnt work and I was still on the couch, and my daughter was standing in front of me, naked, her bottom half covered in poop. Apparently, she also managed to get it in a few different locations, upstairs and down. She told me she was trying to get to the bathroom and it all came out......... With all the different places it landed in the house, I imagine she was running to and fro looking for a toilet.....WE HAVE 6 TOILETS IN THIS HOUSE...WHAT WAS HER PROBLEM?? I did my best to clean it up.....that was poop incident #1
Later, Elise managed to poop all over me...it's like she is able to twist her body and manage to get all her poop out the leg hole of the diaper....she is my only child that shoots poop at me (she has real distance with her gas) almost every time I change her!!
That was no big deal, thankfully,.....
Later on, Andrew had to contend with the effects of the tylenol and codeine...CONSTIPATION. It turned into a bit of an event, which came to an end in the middle of the night (thank God in the toilet!!!)
I am happy to report that everyone is feeling much better today, and nobody has had any pooping problems.
Tomorrow the kids will go with Grandma J for a sleep over...they are very excited!!
Thanks for your prayers and messages,
love,
Kim
Wednesday, August 23, 2006 1:13 AM CDT Hi Everyone,
Andrew went to the clinic today, for his IV and spinal chemo. I feel so bad for him, as he really isnt feeling well tonight.
First, since he cant eat or drink before his spinal taps, he doesnt get his morning meds. He has been complaining that his bones hurt - a result of not getting the meds for his neuropathy. Then, he jerked a bit during the spinal, and now his back is very sore. Every time he goes to move or bend, he cries out - almost as if he forgot his back hurt until he moves it, and the pain reminds him. Finally....shortly after we came home, he began screaming like I havent seen in some time. He was grabbing his head, yelling "OW! Help me!" and throwing up a lot. It is not uncommong for kids to get spinal headaches, although Andrew usually doesnt get them. Sadly screaming pain lasted for over an hour. I tried to give him some medication, but he immediately threw it up. The doctor called into the Kaiser pharmacy, to order the disolvable meds so they could get into his bloodstream (despite the vomitting)....however, (can some of you guess what I might say??)....Kaiser didnt have any zofran (the med needed) and has to order some for tomorrow. AND, while venting to the Kaiser pharmacy tech about the problems we encounter getting Andrew's meds in a timely fashion...he actually told me I should order meds on the weekend, as it is less busy and the prescriptions dont get backed up.....I let him know that I cant really tell my 5 year old with cancer to only have medical issues on the weekend....and he said it was just something to keep in mind!
Anyhoo.....one good thing about living in a cluster of cancer kids, is that I have neighbors with a supply of disolvable zofran....THANKS RENEE!
Clinically, Andrew's ANC is up a bit (1100) but not enough to think about raising his chemo, so he still gets 50 percent during the week.
Andrew has started soccer, and a distressing behavior has emerged. He has had 2 practices (Doug is his coach) and at both of them, he had 1 emotional meltdown after another...to the point that I had to take him home half way through practice this week. This is so unlike him, and Doug and I are really puzzled (and embarassed) at his behavior.
We arent sure, if like his finger nails, he is just tired of being pumped with chemo and feeling crappy for 3 years straight......it could be the steroids (as I have heard from others that it gets worse each month and stays in the system for longer periods of time)....or, he is at an age, where he just doesnt like sharing his dad with his friends. In any case, we are praying that this improves soon...he did enjoy being part of the team last year (Doug coached last year too, and Andrew had fun)....and we hope he can turn around his attitude (if he hasnt already scared off the other kids) and enjoy this season too.
Thank you for praying for Andrew and for our friends that are really fighting for their lives right now.....some of you have prayed for Baby Donovan in the past, and we are saddened to learn that he has relapsed again, also Cam and Nicholas who need extra prayers.
Have a great week.
Love,
Kim
Friday, August 18, 2006 6:25 PM CDT Hi Everyone,
The kids are getting geared up for school. We went to Andrew's school to get all of the important paperwork done, and find out which teacher he will have. He will be attending the Stoneybrooke campus in our neighborhood, and is in a Kindergarten class with only 14 kids!! That should be a wonderful environment for learning.
Doug and I are always a little nervous when he starts a new activity, wanting to make sure that he is protected from germs, etc. We also are a bit worried that he will be going a full day. He still naps a good 3 hours each afternoon, and it is important for his body to get the rest he needs while on chemo....we are going to play things by ear, but havent ruled out 1/2 days for him if he seems too tired. We will be taking a break from swimming, karate and gymnastics...so that he can get adjusted to his new school schedule and not get worn out.
The past week or so we noticed that his finger and toe nails are falling off. He has lost 3 this week...they just come off in one piece...no sign of trauma or injury. They are a side effect of the chemo (in the same way that his hair has fallen out in the past)....I guess we were lucky that it didnt happen sooner. Hopefully his hair will not fall out too.
The rest of us are doing fine. Baby Elise is very sweet, and the kids look forward to her "waking hours" so that they can hold and cuddle her.
Have a great weekend, and thanks for your prayers.
love,
Kim
Wednesday, August 16, 2006 0:02 AM CDT Hi Everyone,
Andrew went to clinic today, and his counts are still low (ANC 1080). They will continue his chemo at 50 percent dosing. It's amazing how this little virus takes so long for him to recover! He will go back in next Tuesday to check his counts again, and he will also get a spinal tap and IV chemo at that time. Please pray that the meds he is getting are sufficient to heal him from the cancer.
The rest of the family is feeling fine. Doug is feeling much better, I am doing well, and Baby Elise and Christine continue to blossom.
Christine will be starting school this year. She will attend preschool 3 mornings a week, and is looking forward to it. She went and visited the school this week and is very excited to be in the "butterfly" class.
Thank you for praying for our family....please continue to pray for our friends as well......three families going through particularly difficult times; Christian who received a bone marrow transplant today, and 2 families that are trusting God to get them through life's most difficult time; Cam and Nicholas I know all 3 families are dependent upon God's intervention and would be thankful for your petitions for their children.
Love,
Kim
Tuesday, August 8, 2006 4:51 PM CDT Hi Everyone,
It's hard to believe, but Andrew has been fighting his cancer for 3 years. He was diagnosed on August 6, 2003....looking back is filled with both pain and blessings....His doctor said something 2 weeks ago that sticks in my mind, because I feel the same way, ...when we went in for his chemo and check up, Dr. Kirov said, "I cant explain how it fills me with joy to see him doing so well, he should be the poster child for CHOC Cancer Institute." Dr. Kirov was one of the doctors we sat down with, to wrestle with the decision for radiation.....in fact, he thought we should put it off, as the certain cognitive damage was too risky....so I know he shares our thankfulness to God when he sees Andrew now....because we didnt postpone the radiation, we did it....and Dr. Kirov always remarks at how bright Andrew is, even with the radiation done so early. He was also there to order lots of tests for Andrew, when his weight dwindled, and he lost over 30 f his body weight...sleeping 23 hours a day, unable to walk......so to see my spunky, sassy Andrew now, running around the clinic, full of energy....I know it makes him smile as much as it does me....
Thanks for all of the prayers over the years...for those that have been with us from the beginning and those that have joined a long with way...there have been lots of miracles, and it is wonderful when even our doctors notice them.
We went to the clinic this morning, and just got the results....unfortunately, Andrew is having a hard time tolerating the chemo increase, and his counts have dropped again (ANC 765)...so, we are dropping back down to the 50 percent dosing, and will go in next week for another set of labs.
I am trying to put some pictures up, hopefully this will work....
 The kids admiring their new baby sister.
 After Elise was born, daddy came out to bring the kids in to see her.
 On the day we came home with Elise, Andrew and Christine waited anxiously on the curb for her arrival.
Other than Andrew's counts...we are all doing well. Doug still has some stomach pain, but the doctors said it may take the meds til Friday to really work enough to take the pain away. My incision is painful off and on, but definitely I feel much better than I did before Elise was born. Elise's belly button has been fine, but she woke up this morning with dried blood on her tummy...it has stopped bleeding, so I will wait til her scheduled visit tomorrow for her to see the doctor.
Thanks for your prayers and kind wishes....
love,
Kim
Saturday, August 5, 2006 12:19 AM CDT Hi Everyone,
Thanks for all the prayers for our family....
Doug took off the week of work to spend in the hospital with me, and to be here this past week to help out with things at home while I recovered from my surgery. He has been a real trooper, in spite of being in a great deal of pain himself.
A few weeks back, he had kidney stones, which in turn led his doctor to conduct a number of tests. The test results indicated that there were further problems, and Doug was scheduled for a CT scan of his liver. We have been very nervous about this....and then this past week, while in the hospital with me, Doug started developing painful symptoms again - not kidney stones, but other pain. He went to the urgent care on Wed...where they confirmed that he needed CT scans, but the pain was so unbearable, that he went to the ER this past Thursday...and was there til Friday morning. We are very happy to report, that he was diagnosed with diverticulitis He is still in pain, and is on some heavy antibiotics...please pray they do the trick, or he will need to go inpatient for stronger antibiotics....but it is a much less serious illness than what we feared he might have.
So....Friday, after he returned from the hospital, we laughed, commenting on what a pathetic bunch we have become in our old age....and vowed to get as much rest as possible before he returns to work on Monday.
Elise did go to her first check up on Friday....they said her jaundice issue looked fine, is taking care of itself, and her little hernia should also close up on it's own. She will go back on Wed to make sure that she is gaining her weight as scheduled.
We all took a big family nap Friday afternoon....only to wake up to Elise having a bloody belly button!! Her umbilical cord fell off days ago....but blood was coming from inside her little tummy.
After 2.5 hours of trying to get advice from the Kaiser advice nurse (I wont go into the whole ordeal, but let me say that what we were doing -cleaning the area with alcohol- was making matters worse ...remind me never to ask the "advice nurse" for advice)...we ended up having to take her to the ER...yes, the same ER that her daddy had been at, just 12 hours earlier.....they had us apply pressure until a clot had formed on her belly button....and said to return if the bleeding resumed. Thankfully...it has stopped, and we are prayerfully hoping that our family has ended it's tour of local hospitals, ERs and doctors offices....at least until next week when we have some scheduled visits.
So, now we have the weekend to enjoy our new baby while Doug and I get some rest.....the kids are having a great time with their new sister, and are being very helpful.
Thanks to Lori for the delicious dinner!! With all the chaos around here, it was such a help to not have to worry about cooking.
Please continue to keep us in your prayers....we really appreciate the support while we get through these medical bumps in the road.
Love,
Kim
Friday, August 4, 2006 0:30 AM CDT Hi Everyone,
Thank you for the kind guestbook entries, emails, cards, gifts, flowers, offers to make meals......we appreciate the love and support.
We are all home now, and Doug has a few more days off, which is a big help. It is still painful for me to walk (due to the c-section), but it isnt half as bad as the sciatica was....and I know this will heal soon.
Elise was much smaller than the doctors had been measuring (on their fancy ultra-sound!)....they expected her to be about 8 pounds, and she was 6 pounds 9 oz....just an ounce bigger than Andrew...and she looks EXACTLY like he did. (actually, the kids all looked alike, except that Christine was a much bigger baby). Even the doctor said, "Wow, she looks just like her brother!"
She is an excellent baby...eating and sleeping well.....not sleeping quite as well as Christine (who slept through the night immediately)...but she is so easy, just feed her and she goes right back to sleep...never cries. Ive been so lucky with all 3 in this way.
She is a bit jaundiced, so we go back to the doctor tomorrow and hope that her bilirubin is normal. It's not a big deal, but it is just one more thing to worry about...so praying that all is well. We took her outside a lot today, hoping that some sunshine would help....wouldnt you know that in our "longest-heat-wave-ever" today was the one day that was overcast and cool!! Still hoping some sunshine got through to help her jaundice.
Ill have some new pics to post soon, hopefully tomorrow morning...
The kids are really enjoying their sister, wanting to hold, touch, kiss, talk and play with her every moment. It's been cute to watch.
Thanks for all of your prayers.....
love,
Kim
Saturday, July 29, 2006 9:51 AM CDT UPDATED WITH PHOTOS
Happy Birthday Elise!
We are proud to announce the birth of Elise Dianne Sprague. Elise was born at exactly 1:00 yesterday afternoon (6lbs 9 oz, 18 inches long) and completely healthy. Mom was very brave during the C-section and is recovering well.
We will try to post some photos tomorrow. If you would like to call Kim she is at Mission Hospital (949) 364-1400 Room 261.
Doug
Wednesday, July 26, 2006 11:42 AM CDT Hello Friends,
Yesterday, Andrew was at clinic and his blood work continues to remain at a 1200 anc, which is just where we want it to be. We are *finally* (yeah!) increasing his chemo back up to 100 percent! I am a tad nervous, since his anc has remained at 1200 while on 50 percent, there is the concern that doubling the chemo will cause his counts to crash again (which would force us to reduce his meds again).....so please pray his counts remain stable and the chemo will continue it's good work in him.
**UPDATE Wed afternoon** The doctor called last night, and I missed the message....but he wants to increase Andrew's chemo up to 75 percent, not 100. This will give us more hope that his body handles the increase....although we still would like for him to be getting all he can to fight the cancer. We will recheck his labs in 2 weeks and see how things go.
BTW, re: Kaiser.....we have had a hard time getting prescriptions from them....they ran out of Andrew's chemo (after telling me they had it in stock)...not to mention that the girl handling our "continuity of care" case hasnt returned my calls in SIX WEEKS!! And while they have denied Andrew his care at CHOC, she hasnt told me how to get him to see his specialists (since they dont have some, and a few are very far away.)...but duh, since she wont return my calls, I guess it's hard to tell me where to go....everytime I see one of their commercials on TV ("thrive")....I want to throw up...since they dont seem all that interested in Andrew or I's care....or the increased stress that all this is putting on me (not a good idea when I have a high risk pregnancy!)...anyhoo...so much for that rant......
Andrew had a great play date after clinic, but I think he wore himself out. When he came home, he had a terrible headache and began vomitting. Im not sure if it was because he was too exhausted, bothered by the heat (dehydration, which some of his meds cause - let alone the hot/humid weather)....or the chemo. Thankfully, he took some zofran, fell asleep and felt better in the morning.
The family is all excited, as Elise will be here very soon! I continue to have contractions off and on.... sometimes at a strong and consistant pace. My walking has all but stopped - and sleeping too.....but knowing she will be in our arms soon makes it easier.
I have had a lot of fun reminding the kids about their births....they were both very cute, with lots of black hair. Christine was a planned c-section, where we sang oldies at the top of our lungs throughout the process (I was drugged, OK)...Andrew's, well...it was less pleasant....my water broke (dramatically, like a fire hydrant)..and after 24 hours of labor, my defunct cervix still wasnt dialated, so we had an emergency c-section...no singing that time, it was all vomitting and screaming, as the pain meds had worn off and I felt the whole darn surgery!! (of course, when I recount the birth story to Andrew, we skip right to the part where I got to hold him....and how wonderful it was..he doesnt know about the pain.)
I am hopeful that since Elise's c-section will be planned, it will be similar to the experience with Christine....even the trauma of Andrew's was worth it tho....the joy of Andrew overshadows any pain of his birth.
I will make sure that Doug posts the birth on the website...much easier than calling a list of people :)
Stay tuned....
Love,
Kim
Saturday, July 22, 2006 11:34 PM CDT Hi Everyone,
Do you like the graphics?? Just hoping that the psychological impact makes us all feel a bit cooler.
Andrew is doing well and I am hopeful that when we go in on Tuesday that his counts will be stable and we can increase his chemo. Thanks for all of your prayers!!
The kids had a fun week....I have to say, that I feel guilty that they havent enjoyed the pools and waterparks more, but it is toooooo HOT! I just cant bring myself to sit out in the 100 degree heat.....so, we stay in the house where (at least the downstairs) is air conditioned :)
They did enjoy their swim lessons....as well as dance (Christine) and gymnastics & karate(Andrew).....we also ventured to the mall, the movies, and drove through fast food restaurants for ice cream!!
My sister Kristine and my niece Trea were in town for a few days, and we all had fun getting together with them...they live in Texas, so we dont get to see them enough.
Today, we celebrated the birthdays of Angelica (Andrew's favorite wife) and her twin brother Alex.....it was so much fun, my kids just love playing with them.
I am counting down the days until Baby Elise arrives. I went in for contractions on M, W, and Friday nights!! each time, they gave me meds to stop them and sent me home :(( Another upset, (you'll need to be pregnant in the 100 degree heat to really get this.....) is that I was told our c-section was scheduled for Monday the 31st....and apparently, it is scheduled for .....(can hardly handle this....) TUESDAY, AUGUST 1st!! Well, there is just no way I can hang on for an extra day...as it is, Im praying that Friday the 28th is the day (the earliest that it really works for Doug and my mom's schedules.)
Thanks for checking in and for your prayers....we hope you are all enjoying the summer and keeping cool!!
Love,
Kim
Wednesday, July 19, 2006 10:01 AM CDT Hi Everyone,
We are all doing well here.....
Andrew went to the clinic yesterday, and we have good news...his blood counts have come up. His ANC (for those that like the technical side) is 1200...which is just where we like to see it (low, but not too low). They dont want to increase his chemo just yet, as it might cause his counts to crash. So we will keep him at 50 percent dosing for another week, and if his ANC stays steady or goes up, then we can increase him back up a bit.
You know, he got that silly virus (hand foot and mouth, which most kids get without notice)...about 2 months ago! To think that he has not been on 100 percent of his chemo for 2 months now, because of a common virus, gives some indication of the fragility of his immune system.
We are hopeful that within the next couple of weeks, we will get him back up to the correct dosing, so we can do all we can to keep the cancer at bay. We will check again on next Tuesday, when he goes in for his chemo infusion.
Elise and I are plugging along, counting days (12!!) Late Monday night, my contractions were getting more consistant, and my doctor had me go into the hospital to monitor them. After a few hours, I got a shot of tributyline (sp?) to stop the contractions and go home (it was 3am by that time)....sleep is definitely getting harder to come by.....
Re: our insurance, we are in the midst of the appeal process with both Kaiser and the state.....please pray they go well, and also, that we are able to secure new insurance by October through Doug's job.
Thanks for your prayers, we appreciate them greatly!!
Love,
Kim
Saturday, July 15, 2006 2:22 AM CDT Hi Everyone,
Andrew is plugging along....so many people have come up to me this past week, and said, "Wow, last time I saw him he was still bald, he looks great!!" It is a reminder of all that God has done for him (not to mention, when he was bald he only weighed about 1/2 of what he weighs now...so besides the new hair, he is looking so much healthier.)... One sweet friend, said, "I havent checked his website in a long time, because I thought he might have died, and I was too afraid to read about it.....Im so glad to see he is doing well!"....which, might sound weird...but this is a cancer friend, and the last time they saw Andrew, he was not doing well at all... when you get close to people in the hospital, and then dont see them for a while, you are left wondering if they made it or not, and it is always such a treat to reconnect with old cancer buddies, and find out that they are doing well. Thank you God for bringing Andrew this far, for making him strong!
So, while Andrew is doing well.....the rest of us are a tad pathetic. It's been like a dark-comedy around our house....
We all went to "see" Elise, via ultrasound, on Thursday. She is looking great, nice heartbeat, wonderful blood flow....and I have even been able to bring down the "extra amniotic fluid" levels. The doctor said she is about 6 lbs 13 oz!! (sounds ready to get out to me!)
That afternoon, the pain of my sciatic nerve was so bad, that I just couldnt take it any longer. I cant put weight down on my legs most of the time, as the shooting pain causes my leg to buckle. It got so bad, that sitting, laying, anything...just had me crying in agony.
And....Im sure, just for the fun of it.....Christine decided to get a little mischievious.
You should understand, that at best, I sit on the couch, and yell for my kids to bring me some water, or a piece of fruit or something, since I can barely move....they are pretty much on their own. They are usually great kids, and it's not a problem, unless they decide to be disobedient....then they know that I can tell them to go to time out, but if they dont want to go, Im not in any shape to get up and make them. If they want to run outside, mom cant chase them, they can pretty much do whatever they want..........and it seems that Christine decided to take advantage of the situation.
What might the little angel do? How about, pour approximately 5 gallons of water, one cup at a time, onto the rug in the family room. It completely soaked the area rug, and the wood floors underneath it!
Obviously, I wasnt in any condition to move the furniture and roll up the rug, dry the floors, etc......so I scolded her, cried, and called Doug.
Apparently, that wasnt enough, so she then went and pooped her pants, which fell to the floor, which she then stepped in and tracked around the house.
**btw, the air conditioning in our upstairs is not working...and we are in the midst of the worst heat-wave I can remember.....**
So...between the heat and the poop, the aroma in the house became worse than the pain in my sciatica, and I was motivated to crawl around the house and wipe what poop I could find off the floors....all the while yelling at Christine through my tears.
The combination of my pain, frustration and emotional meltdown was too much.
So.....I called my doctor, (who truly thinks I am a basket case....) and told him I wanted an amnio (to check the baby's lung maturity)..and if the lungs are good, I need my c-section NOW. He said that we could do so in the morning ( I had my stress test appt. scheduled for Fri morning).....then I got to feeling selfish, and called back, and said, my second option would be some good pain meds, and if they worked, I might be able to hold off a bit longer. So...he gave me some good stuff, and thankfully, things are much more tolerable!!
So...now that I am finally feeling better.....Doug's kidney stone deal started acting up. Poor thing was doubled over in pain...in fact, still is.....he went to the ER this morning, and they found some stones....gave him some meds, and told him to go home and wait for them to pass. They also found a benign tumor on his adrenal gland, but said he needs to go have it checked (sounds like the "corn" in his head, which he still needs to have checked!)
And, just for good measure....Christine has developed a horrible cough, so we took her in too, and got her some meds.
Doug laughed, and said that Andrew was the only one that didnt see a doctor today!!
The good news, is that I am finally feeling a bit better with my new meds, but please pray for Doug,his kidney stones, and his tumors!
We are looking forward to a restful weekend....getting ready for out newest little sweetie (poor thing, she has no idea what kind of a wacky family she is getting into.)
Thanks to all of you for your prayers....for us and for our friends.....
love,
Kim
Tuesday, July 11, 2006 10:30 PM CDT Hi Everyone,
We started off the morning with a trip to the clinic to check Andrew's counts. (Dena and Brendan, you would be jealous, as the whole thing lasted about 15 minutes or less....and we thought of you!!)
Then we went straight over to my doctor's appointment, for a "non-stress test".....
I was so excited that our medical errands were moving along quickly, and was dreaming of getting home to have lunch and a nap!!
But, that would be too easy, right??
So, we go for the stress test, and my doctor makes all kinds of jokes, like, "where were you this morning?? I had you scheduled for a c-section, but you didnt show up..." I all but laid myself out on the table in his office and searched for a scalpel.
HA HA, jokes on me.....2 weeks and 6 days left to go.....
So, we move ahead with the test, which is essentially picking up the heartbeat on the monitor, and making sure we get a good 10 minutes of a healthy heartbeat and movement.
The nurse kept trying, and we couldnt get the heartbeat. So the doctor came in, and (because he is the doctor) explained how she needed to do it.....and then proceeded to try himself for 20 minutes, and couldnt get the heartbeat.
So, there I am, with goop all over my tummy.....both of the kids were there....Christine in her new dress that says, "I'm the Big Sister" in 'diamonds' (adorable dress, available at the ever cute store BUNDLES OF JOY...check them out online if you arent in the neighborhood).....
The doctor then tells me he is sending me to the hospital, as he wants them to monitor me and get the heartbeat, and perhaps an ultrasound...just to be on the safe side.
THERE GOES MY NAP!
Actually, with my very self-ish mode in high gear, I thought there could be an upside to the whole thing, if the nurses determined that .... "WE NEED TO GET THIS BABY OUT TODAY".....
Instead, the kids and I go next door to the hospital, Doug comes to get the kids...and I get monitored.
Thankfully the baby is fine, they found her perfect heartbeat and movement.....and while Im thankful, there were a few tears shed, because 7-11 is a really cool birthday (btw, Happy Birthday to Donovan's mom, Melissa!!)
So, a few hours later, we go home, and take our nap :)
In the evening, I was able to get Andrew's lab results, and am bummed that his levels actually dropped lower (anc is 661) instead of going up. We will keep his chemo at the 50 percent dosing, and hope that it comes back up next week.
Thank you for praying for our friends; Cam and Nicholas are both out on a limb, trying highly experimental treatments, and holding on to God's promise that He has a plan and a future for Nicky and Cam, plans of good and not to harm them.....please join them in asking God for a miracle.
Also, some of you may remember our friend Alonso. He was diagnosed with osteosarcoma (bone cancer in his leg) the same week that Andrew was diagnosed with his leukemia. We spent a lot of time with them in the hospital, and Alonso seemed to do well with treatment. Sadly, he has had recurring tumors, as the cancer has spread to his lungs, and despite surgeries, he has had another relapse. They are trying a new experimental drug, and fly to New York for their treatment, every other week!!
Even though he has spent the last 3 years sick, Alonso has managed to stay on track in high school......is beginning his senior year, and has a 4.3 gpa. Way to go Alonso, you are an amazing hero, and we are praying that this new treatment is used by God to bring you complete healing!! (Alonso doesnt have a website, but I know would love your prayers.)
love,
Kim
Tuesday, July 11, 2006 10:30 PM CDT Hi Everyone,
We started off the morning with a trip to the clinic to check Andrew's counts. (Dena and Brendan, you would be jealous, as the whole thing lasted about 15 minutes or less....and we thought of you!!)
Then we went straight over to my doctor's appointment, for a "non-stress test".....
I was so excited that our medical errands were moving along quickly, and was dreaming of getting home to have lunch and a nap!!
But, that would be too easy, right??
So, we go for the stress test, and my doctor makes all kinds of jokes, like, "where were you this morning?? I had you scheduled for a c-section, but you didnt show up..." I all but laid myself out on the table in his office and searched for a scalpel.
HA HA, jokes on me.....2 weeks and 6 days left to go.....
So, we move ahead with the test, which is essentially picking up the heartbeat on the monitor, and making sure we get a good 10 minutes of a healthy heartbeat and movement.
The nurse kept trying, and we couldnt get the heartbeat. So the doctor came in, and (because he is the doctor) explained how she needed to do it.....and then proceeded to try himself for 20 minutes, and couldnt get the heartbeat.
So, there I am, with goop all over my tummy.....both of the kids were there....Christine in her new dress that says, "I'm the Big Sister" in 'diamonds' (adorable dress, available at the ever cute store BUNDLES OF JOY...check them out online if you arent in the neighborhood).....
The doctor then tells me he is sending me to the hospital, as he wants them to monitor me and get the heartbeat, and perhaps an ultrasound...just to be on the safe side.
THERE GOES MY NAP!
Actually, with my very self-ish mode in high gear, I thought there could be an upside to the whole thing, if the nurses determined that .... "WE NEED TO GET THIS BABY OUT TODAY".....
Instead, the kids and I go next door to the hospital, Doug comes to get the kids...and I get monitored.
Thankfully the baby is fine, they found her perfect heartbeat and movement.....and while Im thankful, there were a few tears shed, because 7-11 is a really cool birthday (btw, Happy Birthday to Donovan's mom, Melissa!!)
So, a few hours later, we go home, and take our nap :)
In the evening, I was able to get Andrew's lab results, and am bummed that his levels actually dropped lower (anc is 661) instead of going up. We will keep his chemo at the 50 percent dosing, and hope that it comes back up next week.
Thank you for praying for our friends; Cam and Nicholas are both out on a limb, trying highly experimental treatments, and holding on to God's promise that He has a plan and a future for Nicky and Cam, plans of good and not to harm them.....please join them in asking God for a miracle.
Also, some of you may remember our friend Alonso. He was diagnosed with osteosarcoma (bone cancer in his leg) the same week that Andrew was diagnosed with his leukemia. We spent a lot of time with them in the hospital, and Alonso seemed to do well with treatment. Sadly, he has had recurring tumors, as the cancer has spread to his lungs, and despite surgeries, he has had another relapse. They are trying a new experimental drug, and fly to New York for their treatment, every other week!!
Even though he has spent the last 3 years sick, Alonso has managed to stay on track in high school......is beginning his senior year, and has a 4.3 gpa. Way to go Alonso, you are an amazing hero, and we are praying that this new treatment is used by God to bring you complete healing!! (Alonso doesnt have a website, but I know would love your prayers.)
love,
Kim
Sunday, July 9, 2006 7:02 PM CDT Hi Everyone,
The kids had a great weekend, which included going to the movies with Grandma J. They are all getting excited for their extended-sleepover-palooza, which will take place when Elise is born (Grandma will stay here with the kids, while Daddy is in the hospital with me and Elise.) Oh what fun they will have!!
When Christine was born, Andrew and Grandma made a special garden together.....wonder what is in store when she stays this time????
Im sure there are a few of you, that follow Andrew's progress, that are thinking, "what a selfish woman....her son has CANCER, and she is busy complaining about being pregnant! The Nerve!!"....and, you are probably right....I am living what some women only pray to experience (the pregnancy)...and SOME even think it is one of the most beautiful times of their life....and all the while, my son is battling for his life with a horrible illness.....so, what right do *I* have to complain about this temporary, beautiful-baby-in-the-end, condition???
Well, I really dont have any place, other than to say that it only goes to show that Andrew didnt get any of his BRAVERY genes from me!
I never had to go through anything like Andrew as a young child....the closest I came was getting my tonsils out (and I still remember being upset because I wasnt allowed to eat, and had to sleep in a CRIB!! - I was 3- and they put a net covering on the crib so I wouldnt climb out!!!...)......OR, "cracking my head open" when I was 4. I fell off some playground equipment, and the cut on the back of my head required stitches. I still remember the crazed neighborhood ladies rushing to clean off my head....and one neighbor (who we all knew was MEAN) held my head under the bath tub faucet to rinse off the blood (yes, my mom allowed this!)......when we got to the ER, instead of just taking me in there, for some crazy reason, all of us kids (including me, the bleeding one) waited in the car, while my mom went in...she came back out only to tell me about a girl inside, who was riding on the handlebars of a bike, barefoot (!!!) and got her toes caught....she even dared to turn this into a 'safety lecture'...and I still remember wondering why on earth she was telling me all of this....MY HEAD WAS BLEEDING!!
Inside, my memories include being lied to, in order to get me into a straight jacket (yes, some foreshadowing here)....and being held down while they SEWED MY HEAD - and I tried to KICK THEM ALL OFF OF ME.....
Fast forward 35 or so years.....to another 3-4 year old (really 2-5) who gets big stinking needles into his pelvic bone (through his back)....who has taken poisons for 3 years that make him violently ill at times and give him painful side effects.....who has large, hooked needles shoved right into his chest.......and who barely says a word about it.
You can see, that the two must come from completely different gene pools.....certainly the brave one couldnt be the offspring of the giant scaredy cat....or could he????
Yes, it is amazing, that Andrew is able to endure so much, and doesnt throw a fit.
I have told the nurses so many times, actually, I ask them, "Dont any of the kids try to hit and kick you or run away when it is time for their bone marrow aspirates or spinals???" I am pretty certain I would need to be restrained....heck, Id never get out of the car and go into that place to undergo the torture that these kids go through.....
Many people, maybe even some of you, have said to me, "I know you would take this pain/treatment/cancer from Andrew if you could..."
Um, let me confess, NO WAY!! I wish Andrew never got cancer....wish he didnt have to go through the agony of all of this, but I would be lying if I would prefer to take it on myself - you see, I never could.
When Andrew is going through tough times, I THANK GOD, that He has given Andrew courage, strength, bravery, tenacity.....I pray that He makes it easy on him, but I mostly am in awe, that a little kid could go through all of this without complaining.
My family already knows, that if I am ever diagnosed with cancer, that we will have a bon voyage party, a dream vacation, and lots of good times, but I would never be able to go through the kind of treatment that Andrew goes through.
So....Andrew has a cowardly mom, who complains about her back, dramatically cries about suffocating, and just cant handle much in the way of pain and sacrifice.
Lucky for us, Andrew, was blessed with incredible bravery.....like many of his cancer buddies......
Please keep them in your prayers, especially Cameron and Nicholas who are bravely fighting for their lives, against the odds, but with dignity and courage.
Love,
Kim
Friday, July 7, 2006 2:50 PM CDT Hi Everyone,
We hope you all had a great 4th of July!! We enjoyed great food, fun with friends and fireworks!!
We thought of all the brave soldiers protecting our freedoms....thankful I dont have to wear a veil, that Christine can go to college, that Andrew wont be a soldier in his elementary-school years, glad that Doug doesnt work 18 hour days of manual labor so that we can live in poverty....you know, just glad to be an American, and praying for all of those making it possible.
One special prayer was for my brother-in-law, John.....he is stationed in S. Korea (um, kinda thinking someone took that assignment thinking it would be more cushy than Iraq....sure hope he gets home before things heat up over there.) We pray that he is safe, and are grateful for the sacrifices he is making (and his family, my sister Kristine and her two kids.....) Come home soon John!!
As for us......we are moving along....Andrew will go in Thursday to check his labs and see if we can increase his chemo. He is doing fine otherwise....enjoying gymnastics, swimming, karate, and having fun with friends.
I have been keeping up with my 3x a week ob visits....Baby Elise is getting big, and heavy.
I tried to negotiate with my doctor the other day.....seeing if we can plan to have the baby on the 24th instead of the 31st....not much luck. All I got was the standard lecture about babies born with premature lungs.....I countered with my own lecture about moms that have heartattacks from carrying heavy babies, or who pass out and die because they can no longer breathe - as said heavy babies are squishing their lungs.....and, let's not forget the dreaded moms that have their entire pelvis/lower-skeletal system just crumble from the weight of it all.....I dont think my doctor wants any of those "complications" on his hands either....does he??? Apparently he is willing to take the chance!!
the good part of my frequent visits, is I get more time to wear him down with the dangers of being pregnant...and hopefully will be able to convince him (if for no other reason than just to be rid of me)...that I should have Elise on the 24th. - thanks to all of you who are right there with me, praying for her early release! (and if anyone has "home remedies" for getting your water to break, feel free to let me know....)
We did go to Babies R Us to purchase the big ticket items (cause as Murphy's Law would have it, we got rid of everything "baby" 2 months before we conceived Elise).....Doug pushed me in my wheelchair (any vanity I ever had is now gone)....and the kids followed- pulling every baby thing of it's rack or shelf, and gushing about how "perfect" it would be for Elise...they are just so excited!! So, we are officially getting ready for her arrival :)
Thanks for your continued prayers re: our insurance.....current standings:
Andrew -denied, but we are appealing through Kaiser, as well as doing an Independent Medical Review through the state (this will be binding and Kaiser and our family will have to abide by whatever they decide)....but in the meantime it is nerve wracking...we are continuing at CHOC and praying we dont have to pay for it all.
Kim- approved, but they are only paying a reduced rate - AND only approved me for 3 days in the hospital.....unlike my friend Kristie, who goes waterskiing after giving birth....I take a while to recover, and needed 5 days to "be up and walking without the catheter" after Andrew and Christine.....so....hope nobody seriously expects me to be up and at-um after 3 days!!!
anyhoo......enjoy the summer!
Love,
Kim
Friday, June 30, 2006 9:38 PM CDT Hi Everyone,
We had a fun Friday, which included an AWESOME lemonade stand at Edison International. I walked in to the room, and the place was decorated, with all kinds of baked goods adorably wrapped up and set out with cute little lemonade tags....they really are a great group....thanks to Shellie, John and all of the committee that put the "stand" together!!
It was our last stand of the season, but we are definitely excited for next year! I have pictures up of Andrew at each stand, and at each one he is with a cancer buddy. One day, our kids will have a lemonade stand for the fun of it - to make some extra cash for a toy or a trip for ice cream. Little kids shouldnt have to work to save their lives - but we hope by doing so, the cure will be that much closer.
The amazing thing about this charity.....is that it was inspired by a little girl, who truly did turn lemons into lemonade. The concept of the lemonade stand can be replicated by anyone (even a 5 year old)....and the money really does save lives. Alex's parents run her foundation, and give lots of grants (as they see fit, which sure beats a beauracracy doing the funding)....and they have helped fund research for all kinds of pediatric cancers.
Unlike adults, almost all children fighting cancer are on an experimental trial....and it really is guess work re: what works and what doesnt. The current plan (for leukemia anyways) is to bombard their body with all kinds of chemo (Andrew had 13 different chemos) at high doses (kids get more intense dosing than adults!!!) for a long time (most kids get 2-3.5 years, when adults get 1 year of treatment for the same cancer).... And to make matters worse, large groups (who like our kids to parade around at their events...sorry, but it's true).....give almost nothing to fund pediatric cancer research....pediatric cancer research relies on donations, small organizations like Alex's Lemonade, and on our own little children (as the guinea pigs) to try to find the cure.
Thanks to all of you who supported our efforts this year (and years past)....if you have been meaning to donate, but havent had the chance...the link at the top of the page will lead you to our "lemonade" website, and there is still time to donate on line.
May God bless each of you with a wonderful 4th of July.....and please set off a firecracker for our friend BRendan , as he will be stuck in the hospital on the 4th of July (that stinks!!)
love,
Kim
PS. Andrew just returned from the pool, vomitting with a massive headache....no telling if this is from the heat, or from the steroids he is taking.....please pray he feels better soon.
11:00pm update.....Andrew has been vomitting like crazy, poor thing. He cant keep anything down. His zofran (anti-emetic) is a pill, which we have given, and he shortly thereafter throws it up. They do make this med in a disolvable tab (which is what you really need when they are throwing up like this.)
Dilemna.....Kaiser pharmacy is not open late....how do we get him a disolvable?
Some of you may remember that when Andrew went to the ER mid June, and we needed a prescription filled (and Kaiser was closed) we had a similar dilemna...and I have since called Kaiser and expressed my concerns re: times he needs prescriptions "after hours"...the gal was gonna get back to me...uh yeah, gotcha, just like they have so diligently followed up on all of his care needs.....Soooo....we call CVS, where we still have a prescription, and buy **1** for the whopping price of $46!! I mean....what do people with kaiser do?? do they only get sick from M-F 9-5pm????
**Saturday AM - Andrew woke up feeling fine, it must have been a reaction to his steroids. Thanks for your prayers!!
Thursday, June 29, 2006 9:45 PM CDT Hi Everyone,
Thanks for your prayers!
Andrew went in on Tuesday morning for his infusion, and also had his blood work checked. His counts came up a bit, but are still low (anc= 828). Thankfully, we will keep his chemo at 50 percent dosing, and wont lower it. If it goes up in the next few weeks, we will be able to move him back up to his regular dosing -pray that happens, so we can make sure we do all we can to keep the cancer away.
Today, we were able to see Baby Elise again on the ultrasound machine. She is moving around quite a bit, and the doctors say she looks wonderfully healthy :)
Christine is so funny, every day she asks, "Is Elise coming out today?"....oh how I would love to say, YES!
I think she must have spent some time watching the Baby Story on TV, as her new favorite "game" is to 'take out my baby'...it goes like this....
Christine: Bend your legs mommy, and when I count to five we will get your baby.
Me: (waiting patiently as she counts to five )
Christine: 1....2....3....4...5.....(and then she pushes my legs into my chest and yells ) PUSH OUT YOUR BABY! PUSH OUT YOUR BABY! (and then she pretends to grab a baby off my tummy, always with a huge smile!)
HA! She loves this game!
Tomorrow we will be having our grand finale of our lemonade season.....our wonderful friends at Edison International (thanks John and Shellie) asked if they could put on a lemonade stand, bake sale, wear-jeans-to-work-for-$5 event for us!! Um, YEAH!!
We feel so fortunate for all the healing that has transpired in Andrew, and do this as a thank you to the families that paved the way before us, and pray that our efforts help those still to hear that their child has cancer......
Love,
Kim
Tuesday, June 27, 2006 8:14 PM CDT Hi Everyone,
Well, we are plugging along here....I spent much of the day with my ear attached to my cell phone, trying to secure Andrew's coverage with CHOC.
As it stands, Kaiser is doing a 72 hour review, and will let me know if they will rescind their denial for his services at CHOC.
In the meantime, I am working with a WONDERFUL gal at the Deparment of Mangaged Health Care....and I will request an independent review if Kaiser denies our appeal.
Here is a rough draft of the letter that I will be sending....I am posting it here, as some of you may wonder "why does it matter if he gets his treatment at CHOC or Kaiser?"
*******
I am requesting that my son, Andrew Sprague (DOB 10/19/00) be permitted to continue his treatment for cancer with his current team of specialists at Children’s Hospital in Orange County. Andrew began his treatment in August of 2003 and has been followed by the same specialized team for the past 3 years. He is scheduled to complete his treatment at the end of this year (11/26/06), and we believe it is important for him to remain with his current team, and allow them to transition him through his treatment
Medical Background
Andrew was diagnosed with T-cell Acute Lymphoblastic Leukemia in August of 2003, at the age of 2. T-cell ALL is known to be more aggressive than the more common childhood leukemia, B-cell. Andrew had a high white blood count at diagnosis, further defining his high risk status.
During his initial week of treatment, the leukemia began to show a resistance to the treatment. He was able to achieve first remission, but the aggressive nature of his leukemia was noted, and he was put on a high risk, experimental trial (1961, SER). He did not follow the trial in it’s entirety, but instead his team took additional measures to reduce the chances of a CNS relapse, and his protocol was supplemented with extra intrathecal methotrexate and cranial radiation.
Andrew’s team of doctors worked closely with his family to adjust his treatment to fit his high risk status and give him the best chance to remain in first remission. His team is familiar with the changes made in his treatment, and I believe that his high risk status and customized treatment plan make it imperative that he remain with the team that researched the necessary changes and has followed his progress from the diagnosis of his illness.
Children’s Hospital of Orange County Team
Andrew has been under the care of a team of pediatric specialists. They are all providing services at Children’s Hospital of Orange County, in the city of Orange, on the same grounds. They work in conjunction with each other, to provide synchronized care to the oncology patients. His team includes:
Pediatric Oncologists: The team of doctors has worked together to provide Andrew the best care. Due to his high risk status, they made personalized changes to his treatment. The Doctors worked together, researching the best practices and consulting outside experts, to develop the treatment that Andrew has received. They are familiar with Andrew, and the way that he has responded to therapy. They work in conjunction with the following pediatric specialists, monitoring a variety of potential side effects that can be caused by cancer treatment.
Pediatric Psychologist: The pediatric psychologist works closely with CHOC Oncology patients and the team of doctors. She has followed Andrew from the beginning of his treatment, and monitored him for potential side effects. He has received extensive treatment to his brain, at a very young age, and is at risk for cognitive deficits. His psychologist is familiar with the effects that chemotherapy and radiation have on young children. She has provided Andrew with annual neuropsych testing, specifically monitoring for any cognitive changes or deficits.
Additionally, the Pediatric Psychologist Department has a special program for oncology patients, the “school reintegration program.” As Andrew prepares to begin Kindergarten this Fall, they will meet with the school and outline the effects of Andrew’s therapy and how it may impact his school performance. They will recommend any special accommodations he may need, provide education to the staff and Andrew’s peers, and be a tremendous resource as he begins his academic career. Their specialized knowledge of Andrew and his oncology treatment is an important part of his care, and a necessary resource as he transitions into elementary school.
Pediatric Endocrinologist
The Pediatric Endocrinologist, Dr. Daniels, is an integral part of the CHOC Oncology Team. In fact, every Thursday, he spends his day in the Oncology Clinic at CHOC to see cancer patients.
Andrew’s treatment has put him at risk for a variety of side effects with his endocrine system, and he is being monitored by Dr. Daniels. Currently, he is being monitored for bone density and growth issues. He is also being followed for side effects to the thyroid. Dr. Daniels has been a part of Andrew’s team from the beginning, and has provided medications and treatment recommendations to help eleviate the side effects of cancer treatment. It is important that Dr. Daniels be able to complete his care with Andrew and remain a part of his team until Andrew completes treatment.
Pediatric Surgeon
Andrew has had four surgeries to place and remove central line catheters. Dr. Kabeer has been Andrew’s surgeon from the very beginning. Andrew is small for his age, and it was difficult to place his double lumen broviac. Dr. Kabeer has been able to follow Andrew and replace his lines as needed. We hope that Dr. Kabeer will be able to take Andrew’s port out when he is finished with treatment, since he is familiar with his body, his previous surgeries and the internal scarring that has resulted from the catheters.
Pediatric Neurologist
Andrew has had significant amounts of treatment to his brain. The chemotherapy and radiation are especially risky on a child who begins treatment at age 2. The CHOC Neurology team has followed Andrew from the beginning of his diagnosis. Currently, we are monitoring changes in his brain with annual MRIs. It is imperative that the team that is familiar with the effects of chemotherapy and radiation on the brain be able to provide his follow up MRI and compare it for changes with his past films.
Pediatric Rehabilitation
Andrew’s treatment has had significant effects on his gross and fine motor functioning. As he progressed through treatment, he suffered a deterioration of his muscles, bones and also sustained nerve damage. At one point, we had him seeing an in-home physical therapist, however that person was unfamiliar with the different chemotherapies that Andrew was receiving and how they effected his motor functioning. We felt it was important to have him return to the physical therapist at CHOC who was familiar with the side effects of chemotherapy, and who had followed Andrew when he was first diagnosed.
Andrew is now being seen by Wayne Cerna at the CHOC Rehabilitation clinic. Wayne is familiar with Andrew’s treatment and the impact it has on his physical functioning. Wayne followed Andrew’s progress from the beginning of treatment, and is currently providing him with physical therapy to help improve his muscle strength.
Psychosocial Factors
It should be taken into consideration, that Andrew began his care with CHOC at the young age of 2. He is now 5, and clearly has undergone treatment that is highly invasive, painful and fear inducing. Through the course of his treatment at CHOC, he has developed a trusting rapport with the staff, and feels safe receiving what could be considered torturous treatment. It would be unfair for Andrew to be forced to change teams at this late point in treatment. I believe that the psychosocial ramifications, of having to endure blood draws, bone marrow aspirates and other painful procedures, from strange persons in a foreign environment, would increase the trauma that is already inherent with cancer treatment. I am asking that you please allow him to complete his treatment with the doctors and nurses that have become like family to him. He has gone through so much in his short life, and I believe it is important for his psychological well being to be able to complete this brave journey with those that have supported him along the way.
Andrew Sprague is a 5 year old boy, diagnosed with an aggressive form of leukemia, who has spent the majority of his life receiving care from a team of Pediatric specialists through Children’s Hospital of Orange County. He has been receiving treatment for nearly 3 years, and is scheduled to complete this treatment in five months. We are requesting that the team of doctors that has followed him through this journey be allowed to complete his care and provide his transition into a stable, cancer survivor.
********
So...we will wait and see how this all plays out.....and pray that God keeps Andrew at CHOC.
As for Andrew...he went in today for his chemo infusion and also they rechecked his blood counts. I havent heard back, but if they are improved, we will remain on the current chemo for a couple more weeks, to ensure that they are stable....if they have gone down anymore, they may reduce his chemo....I am hopeful that they have improved :) I will update when I get the call from the doctor.
I was able to go in for my test...and Baby Elise was all over the place. We only heard her for a short while...and decided that with all that swimming around, she definitely was alive and doing fine :)
Thanks for your continued prayers...
Love,
Kim
Monday, June 26, 2006 11:37 PM CDT Well, Why on earth should our only "non-doctors-appt" day go smoothly??
I have a bazillion errands to do, and was hopeful that I could get many of them done - WRONG!
Day starts, I get up, shower....feeling pretty proud of my self (for those who have a missed a few entries, I dont walk well anymore, in fact, let's be honest, my sciatica is inflamed beyone belief....and I can barely hobble....) So, after the shower, I lay down to catch my breath (just for a minute) and proceed to spend the next 2 hours having very painful contractions.
Well....while the kids are bugging me for breakfast, and worse yet, offering to make it themselves (hmmm...which is more work, making them breakfast or cleaning up their mess???)...I finally decide to call the doctor and they send me to the hospital to be monitored.
Doug comes home....we all go .....spend the better part of the day hooked up to the machines with goop all over my stomoach. Find out one interesting tid-bit....contractions are much more painful when you have "extra amniotic fluid"...lucky me. Anyhoo....get a shot to stop the contractions and go home to "lay on my side"....
By evening, I decided to get brave and go get the mail. The mail box is across the street, and I wasnt sure if I could waddle fast enough to make it without getting run over...but I did my best (and obviously am still alive)....
Guess what I found in the mailbox??? A letter from Kaiser.
Now, I spoke with our "continuity of care" coordinator last week, who assured me that Andrew and I could continue our care with our current doctors. She said that a letter would be forthcoming, but told me that she already let our doctors know verbally - to just send all bills to Kaiser - SUPER!!
So, I am thinking that the letter is confirming our continuity of care....the one I need to pre-register at the hospital....the one our gal said was forthcoming.....
NOPE!! It is a DENIAL letter. It said that Andrew has been denied care with CHOC and we can contact the Kaiser oncologist (not plural, there is one oncologist)to continue his care.
Well, Andrew is scheduled for chemo in the morning...so I look for some phone numbers to get ahold of these bright people that have basically lied to us about our care...and in true Kaiser fashion, you can only get ahold of someone during business hours - just like their pharmacy!! Unlike CHOC, where I can get ahold of people 24/7 (and when you have a life-threatening illness, that is important)....nope...we have to wait for business hours.
I am absolutely furious that this Kaiser gal told me one thing, and I received a letter stating something else. I am beyond angry that we didnt get the courtesy of a phone call....that we had to hear this (days later) in the mail....I guess it's good that he didnt have to go to the ER this weekend, as apparently he wouldnt have been covered.
This whole "continuity of care" has not felt very continuous.....
Thankfully the state Dept. of Managed Health Care does understand that medical issues occur outside the 9-5 hours, and I was able to talk to someone in their office. They said to go to CHOC, and if I am billed, to send it to Kaiser with my appeals.
The appeals process.....that is going to be a fun extra project to handle in the midst of the chaos going on around here!!
I am actually interested to see what CHOC sent Kaiser...and to read what kind of case they made re: Andrew's need to stay with his current doctor. Considering that the last time I needed a medical note outlining his history, they said he had finished treatment last year (!!!!)...I am not super confident that all of his high risk criteria were clearly outlined to Kaiser.....
So, please keep us in your prayers....I detest red tape type crap, and am not looking forward to dealing with this...and truly am not looking forward to getting thousands of dollars in bills (yes, one visit is in the thousands....) and then having to get that mess handled without furthing plummeting us into debt.
HOpefully, I will have some resolution to this tomorrow.....we have Andrew's chemo in the morning, and I have a "non-stress test" in the afternoon (how ironic!!)...and in the meantime will be trying to get this cleared up (although my cell phone doesnt get reception at CHOC....)
Also, as if the baby kicking me doesnt keep me up all night....I have a feeling I will be chewing people out in my dreams, going over the stern letters I will be writing soon, etc.....UGH@!!!!!
kim
Sunday, June 25, 2006 11:42 PM CDT Hi Everyone,
We spent the afternoon at our friend Marissa's "Off chemo" party. It was so wonderful to see her, knowing that she has put 2 years of treatment behind her. We are praying that God keeps His healing hand upon her and that her life is long and healthy. We remember when Marissa was first diagnosed, as it was during a time when Andrew spent most of his days in the hospital (very thin and frail, not doing very well.) So much has happened to both children over that time, and both ran around the park today looking strong and ready to take on the world! Thanks Marissa, for sharing your special day with us, you will always be a very dear friend!! Marissa's aunt took some pics of Andrew and Marissa together, which we hope to have in the photo section soon.
Christine had her dance recital, and looked like the perfect little princess. We have video, and plan on having daddy put the link up soon!
Andrew is growing up...reading everything in site, developing his creative skills (today he made his first 'video' a story about a snake or something that he and Christine acted out - it took several "takes" as little Steven Spielberg had an absolute meltdown each time his "actress" didnt say her lines correctly....all caught on tape, maybe we should put a link of that up too!)....anyways, he is just growing up, and with each new dvelopmental stage, he is processing more of his life with cancer.
Recently, he came to me and asked, "Can kids get cancer two times?" I asked if he was worried about his cancer coming back and he said he was. I tried to reassure him, by telling him that most kids never get cancer again, and that mom and dad and all his doctors are doing everything to make sure that it never comes back. I would love to have told him that it would never come back...but he knows too many kids that have relapsed, or like our clinic friend John or his camp counselor...also named John...both Johns had leukemia when they were little, and now are braving brain tumors (a risk from their earlier treatment)....
He also told Doug, "Daddy, I have to tell you something. If you die, I want you to know that I love you. But I know I will probably die first." We told Andrew that usually the oldest person dies first, so, he wouldnt need to worry...but we all know that he loves us, and we love him too.
Now, most little kids begin to ask questions as they get older and wiser....but it hits home to hear him say these things, because it isnt easy for us to shoo away his fears as if they will never happen, because we live with the understanding that they could.
Even though so much of the trauma of his treatment is behind us, we know that as he grows, he will continue to ask questions (both to us and to God) and come to grips with what has been his life journey thus far. We pray that he realizes that God has never hurt him, but only made him better, and that there is purpose and meaning to his future.
Andrew will go back to the clinic on Tuesday for his chemo infusions (his gets this regardless of his counts being low.) He will also start on steroids and we will check his labs again, to see if we can increase his daily chemo dosage.
This weekend has been a scorcher....we hope you are all staying cool in your neck of the woods.
Love,
Kim
Friday, June 23, 2006 1:22 AM CDT Hi Everyone,
Andrew went to clinic today for labs, and his counts have not improved, in fact, they are a few points lower than last week (anc is 616 for those that follow the technical side of this journey.)
They said to continue his daily chemo at 50 percent dosing, so I am glad we dont have to lower his chemo anymore. We will go back in on Tuesday for his IV chemo, and they will recheck his labs.
The kids had a great time with their Grandpa yesterday....they both love him a lot, and have spent the day talking about him. Come back soon Grandpa!!
Today, I had an ultrasound, and the kids came along. They were very interested to see Baby Elise on the big screen, and the doctor did some 3D (he says 4D, but is there such a thing as FOUR D?) video too....I think she looks just like Christine, same exact profile!! Who knows......but the kids each got to take an ultrasound picture home, in a little folder....they are so excited!
The past two nights, the PBS special, "A Lion in the House" aired, following 5 children with pediatric cancers over a course of 6 years. Admittedly, it wasnt The Sound of Music....the running through the fields and singing was replaced by painful treatments and a lot of fear and isolation. The hardest part of the shows, was the reminder that as much as we try to be meticulous in giving him his meds and keeping him healthy, and as great as Andrew may be doing at any point....we have no control over this hideous disease, and it can turn on us in an instant. 3 of the kids that were chronicled had leukemia...and 2 of them died.....so even though people often tell me "I've heard leukemia is so curable"....even with long and intensive treatment, it simply isnt "curable" enough.It was a reminder to be thankful for the healing Andrew has had thus far......and to continue to work towards a cure.
If you had a chance to watch one or both nights, I'd be interested to hear what you thought of the program.
We have a busy weekend, with the highlight being Christine's dance recital...I will make sure to post new pics!!
Thanks for your prayers and support!
kim
PS. do you like the new border? Andrew picked it out :)
Tuesday, June 20, 2006 9:03 PM CDT Hi Everyone,
We are keeping very busy with a full schedule of doctors appts. Tomorrow will bring us some relief, as our only appts are FUN!
Andrew has started back with gymnastics, and Christine will have her dance recital practice - both in the morning, they go to the same gym. They both love these classes...Christine really takes her ballet seriously, and Andrew is eager to master the tasks at gymnastics and build up his muscles.
Oops...we do have one medical appt....they are getting their teeth cleaned - but this is really fun for them, as they love their dentist! Andrew takes antibiotics before hand, to help protect him from any bacteria that might enter his blood stream during the process...please pray that goes well. Also, please pray that his teeth are holding up. The chemo and radiation have pretty much turned his teeth into sponges ( the enamel did not develop correctly) and we are hopeful that he wont have any new cavities or issues.
Then, we move on to Andrew's KARATE! He has started taking karate at CHOC (yes, it is a long drive for a karate class) but it is put on by the physical therapist, and it is a great way to keep Andrew's PT issues assessed and get the assistance we need in building up his strength. He really loves the class, and is very attentive and interested in learning (which is also true for gymnastics and swimming.....quite the contrast from t-ball and soccer, where he was more content to nap or socialize -but not that into the sport itself.)
In the evening, we have a special treat!! Andrew's Grandpa is flying in from GA (here on business) and will have dinner with us. The kids get a lot of spoiling from Grandma J, but they sure do miss their Grandpa, and it will be nice for them to see him. It has been over a year since they have spent time with him, and they are both very anxious to hug him tomorrow!!
Many of you have followed Andrew through his journey for over 2 years, and through this website have gotten a peek into what it is like to live with a child battling cancer.
I wanted to encourage you to watch an upcoming documentary on PBS (that is the channel here, may differ in other parts of the country) that chronicles the journey of 5 kids fighting cancer. It follows them over a 6 year period, and has received many awards and rave reviews for showing the strength and courage of these little warriors.
You can go to this link: http://www.itvs.org/shows/ A Lion in the House and find the time that it is playing in your area.
It is a two part show called, "The Lion in the House" and should be airing this week.
I realize it may not be a super fun show, but neither is living through it.....what I do hope you will gain, as we have, is the blessing of seeing the good that will come, even out of difficult situations. We have been fortunate to meet and know many brave and courageous warriors in the past 2.5 years...and I am sure that you will come away feeling inspired after watching the show.
Love,
Kim
Monday, June 19, 2006 12:33 AM CDT Hi Everyone,
We hope all of you dads had a wonderful day!
The kids enjoyed spending the day with their dad, which was very relaxed. It began with the kids taking Doug out to McDonalds for breakfast....Andrew wanted to treat, and gathered his saved money to splurge on the festive spread.
While Doug and I sat out on the driveway, the kids rode around in their motorized jeeps, played in the sprinklers (naked)(Doug said the neighbors must think we are "white trash" as we have a pool across the street, great neighborhood water parks, and our kids are naked in the sprinklers.)
Dinner was a BBQ favorite, complete with watermelon and corn on the cob....and 31 flavors for dessert (dont tell my ob!)
Andrew and Christine presented Doug with some special gifts....two pictures for his desk at work; Andrew's was a t-ball action shot, and Christine's was in her dance recital outfit. They also gave him a wonderful backpack - with all the necessities for "nature walks"....it has a cell phone holder, water bottle holder...the kids were very excited to get this for Doug.
Also, Grandma J took the kids out on Sat. to make Doug some special gifts at Color Me Mine (our paint-your-own-ceramics shop) I have included some pictures in the photo section...
On this day, when we reflect on Fathers, the kids and I feel pretty blessed to have Doug. He is devoted to his family, and goes out of his way to make sure that his kids are well taken care of....Whether it is providing financially so that they can have the best schools, activities, neighborhood....providing emotionally through tickles, hugs, and lots of quality time.....taking the kids on nature hikes, reading stories at bedtime, always letting them listen to "their" music in the car, having "sleep overs" in the play room on the weekends....He has given them wonderful memories and traditions that will shape who they are and how they live in the future.
Doug has also been a great example of how to make the most of a bad situation....his willingness to join TNT and ride 100 miles on his bike (3 times now)...to raise money for leukemia research...will certainly teach Andrew and Christine, for now and years to come, that he was there in the midst of this cancer battle, doing all he could to help find a cure, and teaching the kids that you dont give up when you hit tough times, but you step up and do what you can to make the most of the situation.
I know my kids will grow up feeling loved and cared for, never doubting that their dad is there for them through thick and thin!! What a great Father's Day gift he has given to us, for years to come.
Thanks Doug for being such a wonderful dad!
It was hard not to think of our friends, dads themselves, who have recently lost a child to cancer; Mike, Kelly, Jeff, Mike - prayers went up for you, that God would bless you with special memories of your boys, and comfort you as you spend your first Fathers Day without them.
Thanks for checking up on us, and for your continued prayers....we will go back to the clinic on Thurs. to redo Andrew's labs, and hope that his counts have recovered.
Love,
Kim
Friday, June 16, 2006 10:23 PM CDT Hi Everyone,
Warm days have arrived in Southern CA (as if it was ever truly wintery) - summer is here!!
Andrew went in for labs yesterday, and the doctor called last night to tell me that his counts had crashed again (anc is 518). Not a huge surprise, as a virus will do that to him. The bad part, is that instead of increasing his chemo (he is on a 50 osing) we are having to lower it even more! Please pray that his counts will stabilize asap, so that we can get him back on track. He still needs his chemo to keep the cancer under control. Also, please pray that he is protected in this neutropenic state (low anc means he has virtually no immune system)..as he is very susceptible to even healthy bacteria.
On the baby front.....I had a great ultrasound visit on Thursday, and got some amazing close-ups of the little sweetie. The doctor asked if I had been screened for diabetes (which I had, and the number was normal). He then asked, "do you eat well?"......(oh great, he is going to ask about my eating habits)...."uh.....Im not that hungry lately." So he asked if I ate breakfast....."no"....what did you have for dinner last night? "uh, a chicken breast".....and for dessert? "nothing" (because a rootbeer float from KFC is a beverage, not a dessert).....he then goes on to explain that I have too much amniotic fluid, and I need to go on a high protein diet, and cut out the junk and carbs. (He might as well have told me I need to do a balance bar routine at the next Olympics and get a 10.0)....almost impossible!! But, I did eat cheese and whole grain crackers for breakfast.....and really didnt have any sweets today, until my family dragged me to Maggie Moo's (the local ice cream joint)...and so they wouldnt feel left out, I had small sundae :/
anyhoo...more ultrasounds and non-stress tests next week.....
Thanks for checking on Andrew, and keeping him in your prayers...as well as our friends that are having tough times right now....BRendan who is recovering from his surgery for bone cancer, where they replaced part of his leg and his knee, and Cam who has battled hard and long (along with his family)...and who's spirit to win this fight is faith inspiring!
Love,
Kim
PS. for Karen B - when Christine was born, she was 8.5 and 21 inches....I know I was supposed to wake her to feed her, but somehow, at that size, I doubted she would starve...so I let her sleep. I thought it was just a "newborn" thing that would quickly end, but she only slept more and more each night - RIGHT FROM THE START!! And while Andrew was a great sleeper - he nursed EVERY 2 HOURS through the night, until he was 10 mos. old (and probably still would if I let him!) So, Christine's sleeping was a special (and much deserved) blessing :) Praying Elise is just like her big sister.
Wednesday, June 14, 2006 9:44 PM CDT Hi Everyone,
Things have settled down a bit here.
Thanks to your prayers, Andrew never developed a fever, and his blisters are scabbing over nicely (well, as nice as blisters scab.) This is a great relief to us!
Andrew will go back to the clinic tomorrow for blood work, to see how his counts are doing. He is only on 50 percent chemo right now. I am not super hopeful that the counts will be high, only because he was fighting this virus...but who knows. I am praying they are good enough to increase his chemo - as we worry every time they lower his dose.
I went in on Tues. for a stress test for the baby, and she was very active. In fact, when they would find her heart beat and put the monitor on, she would always kick it off my tummy (she is a good aim, always kicking right on the monitor) Christine was an extremely active baby when inside too....but was a dream baby once she was born - sleeping all the way through the night from the get-go....I am praying for the same thing with this little sweetie.
Tomorrow I will go in for an ultrasound, so I can see her kicks in action!! (then we will head up to the clinic with Andrew...getting very busy with our appts. here.) Friday I will have another stress test.
So many have emailed about her name, and I guess we never did announce it:
Elise Diane Sprague
Elise is a shortened version of Elizabeth and means "consecrated to God"
We are all looking forward to having her here.....the kids are especially excited!!
As for the lemonade stand.....Im not good at keeping things a secret...so I will tell you that thanks to very generous friends and sponsors...as well as lots of kind and thirsty neighbors, we have raised a total of $4861.35 so far. We still have donations coming in online, and have the lemonade stand at Edison (our local energy company) on the 30th.
Thanks to all who participated!! We know that research is getting closer to identifying the best (and least toxic) treatments for cancer....and we pray that the cure comes soon for so many of our friends....and we do this in honor of all the cuties that went to heaven way too soon!!
Love,
Kim
Monday, June 12, 2006 9:38 PM CDT Dear Friends,
We went to the clinic today, isolated from the others....all precautions taken....and Dr. Torno said it is hand, foot and mouth. They also called the Infectious Disease doctor, and he agreed it is probably a bad case of hand foot and mouth.
We wont get the titers back re: chicken pox for a few more days, but they are confident that this is HFM. It was a lot of hoopla...because CP can be deadly for a kid with cancer. Andrew has spent lots of time with his cancer buddies lately, and many people were worried about the CP scare.
We are thankful that it isnt CP!! As for HFM, it is a common childhood virus, and most kids get it without even noticing (maybe a mild sore throat)...but when you dont have an immune system, it can become serious. Andrew had it about 7 months ago, and it turned into high fevers for a week and possible viral meningitis (tests never confirmed this, but he had all the symptoms.) So, we are praying that this time he just gets the rash, and that is all. So far, so good, no fever. If he gets a fever, we will go inpatient, but as for now we are thanking God that Andrew is just covered with blisters - BUT NO RASH.
Thanks for the kind and caring emails, as well as guestbook messages. We are so lucky to have so many people praying, and it is a huge support to us to have friends that "get it"
For our cancer-family friends....you know too well the fear that strikes when our kids are exposed to these illnesses - and while I am sorry that you have to experience these realities first hand, it is nice not to be alone on this journey.
For the many dear ones that "get it", even without a cancer kid of their own - God bless you!! You show compassion and understanding that helps sustain those of us on this journey....you understand that having a head full of hair is not an indicator of health...and for those that surf the caring bridge sites....you know that many have earned angel wings with long locks.
But so many still think that since Andrew "looks fine"....we dont need to worry anymore, and the journey is complete.
Thanks to all of you who continue on, through this long trial with us, we thank God for all of you!!
Please pray for our friends that need extra prayers tonight: Brendan who is preparing for "limb salvage" surgery on his leg, for bone cancer (osteosarcoma), Cam who continues to battle to save his life, and is in a lot of pain right now, and for the family of sweetJacob who has gone on to be with Jesus, after a long and faithful battle. Please also pray for our friend Christian (he doesnt have a website)...as he prepares for transplant.
On the baby news front....7 weeks left, really, by the time I have this put up, 6 weeks, 6 days and 12 hours....yes, every hour counts!!
I will be going in for stress tests and ultrasounds, 3x a week....it will kind of be fun to hear and see the little one so often...and hopefully make the weeks fly.
I get updates from "babycenter.com" re: my pregnancy...today's update said, "you MAY be waddling a bit now" and "you MAY have a harder time sleeping" May???? May???? trust me, I am more than waddling, and sleep- what's that??
Hugs to all of you,
love,
Kim
Sunday, June 11, 2006 12:19 AM CDT well....hmmmmm....where to start.......
Let me get the good stuff out of the way.....The Lemonade Stand was wonderful!! We saw so many friends and had a great time. Kyle (Christine's fiance) and his dad stopped by....she was googoo over him the whole time, and he held her and carried her around! It was especially nice to meet the Finneran Clan (and their friend Christian)....John was kind enough to bring his Villanova football jersey for Andrew, which was very sweet!! Brendan Finneran was diagnosed with osteosarcoma (cancer of the bone, in his leg) a couple months back, and is currently in the hospital getting treatment. Please keep him in your prayers - he will have "limb salvage" surgery next week (not easy for an athlete to have to do!!) We also were able to spend time with Marissa, who recently finished her treatment for leukemia. She looks fantastic, and was an angel. Unfortunately, Andrew had a MAJOR meltdown towards the end of the lemonade stand, and I think it frightened Marissa (as well as lots of lemonade customers.) (it was also at this time, that Christine, who has been in "big girl panties" for 3 days now without an accident, pooped and peed all over the place....just to add to the days excitement, or perhaps it was foreshadowing of the rest of the night.)
Thanks to all who came by to visit.....and to the one that put the generous check in (KAREN OF BUNDLES OF JOY) you have given us so much, in support as well as financially....I pray that God blesses you 100 fold!!
I will hold off on announcing our totals, because.......we were asked to sell lemonade at the Edison Company on June 30th. The senior Finneran and our friend Shellie work there, and are putting together a bake sale, wear-jeans-to-work-for-$5, and lemonade sale at the end of the month!! We are very fortunate to be able to take part....and I will announce our final earnings for this year when we finish!!
Now to some other info.....
Im not sure what to make of it all, but yesterday during the lemonade stand, Doug and I noticed that Andrew's pimple on his nose (which we told him was from falling in love with girls) seemed to be getting infected. I called the oncologist, and they wanted him to come to the ER. (major dreaded sigh!) We waited until after the lemonade stand, and then I took him in.
I should say, that he also has mouth sores pretty badly right now....but I figured that was his lovely methotrexate (chemo) at work.
When we get in, he literally breaks out before my eyes.....primarily all over his feet...but on all his extremities. It was clear to me that, "oh, crap, he has hand, foot and mouth again!" (read journal entries from Nov 27 - Dec. 5, 2005 for a recap of the last time we had this hideous virus.) Not a big deal for most people, but it landed us in the hospital for a week last time (insert emoticon of that little face with the bug eyes here!)
Now...the ER doc, diagnosed him with (drum roll please) CHICKEN POX!! It is not on his trunk and doesnt itch, but he thinks it is "atypical" due to Andrew's compromised immune system.
**note to readers...I am pregnant and have not had chicken pox!**
So....they send us home, because he doesnt have a fever, but WE HAVE TO COME BACK TO THE ER TOMORROW TO BE CHECKED as well as to clinic on Monday...and if he gets a fever or the rash gets worse, we need to be admitted.
I dont know where to start with my frustration.....first, I really would like to know if it is Chicken Pox or HFM, so I can let the people we exposed know (sorry Marissa!)....and know how long we need to keep Christine away from people (if CP) etc. So I called the doc and asked him to please run titers on Andrew (who has never had, nor been vaccinated for CP)
Also...we didnt get home until 1am. The whole ER Thing is a gigantic, hideous experience, and I would rather have spent the night at CHOC, rather than drive home at 1am to come back the next day. I told our oncologist (I called him at 1am) that we are not coming back today. I feel pretty confident that if something progresses, I can call and let him know....I dont see the benefit of doing the whole "er thing" again.
They prescribed acyclovir (cp med)....but guess what, WE HAVE KAISER....so, we couldnt take it to the pharmacy at 1am. Kaiser is the nifty group that has "business hours" for their pharmacy. So.....the ER was nice enough (and let me know it was against their policy) to give us 2 doses ...one last night, and one for this morning....and I pray that Kaiser fills the rest without a hitch.
as much as I dont think it really is chicken pox....it could be...as Andrew's school (including one of his own classmates) has chicken pox right now. Unfortunately, (and despite asking parents in his class to contact me asap)...and despite sending two notes home to his classmates, explaining his immune compromised situation....the parent didnt bother to call me. I heard it from the school, a bit late, and actually, they didnt initially tell me it was his class.....so he was with someone that came down with it for a few days. This is a whole nother issue....I mean, if I can go out of my way for the kid with food allergies (non-life threatening), I would hope a parent could call asap when their child exposes Andrew to something that is life threatening....but, whatever....he isnt going back to school this year....so, hopefully next year we will have a different experience.
So...........we are waiting for the titers to come back.....to see if it is CP or not.
We are sort of just waiting to see if Andrew gets a fever (last time he developed high fevers that wouldnt break, but it didnt happen until a couple of days after he broke out).....to see if his rash gets worse, to see if Christine or I get something......
I dont know if I should cancel all contact with the outside world or what.
I have 3 appts. for OB testing this week....do I go??
Christine has dance ...does she miss it??
Anyhoo.....pray that we are all fine and for some clarity to Andrew's rash...I feel like we are in limbo.
Thanks again for all of your support and prayers!!
love,
Kim
Friday, June 9, 2006 0:05 AM CDT Hi Everyone,
We are gearing up for the lemonade stand this Saturday. It is the official "Lemonade Days" for the Alex's Lemonade Stand Foundation. If you dont live in our area, check out Alex's website at www.alexslemonade.org and find a stand near you - there will be over 2000 held nationwide.
CHECK OUT THE LEMONADE LINK ABOVE THIS JOURNAL ENTRY
The great thing about this foundation, besides being inspired by the amazing Alex, is that all of the proceeds go straight to research. Her parents recently gave out over 47 grants to researchers all over the country, working on finding a cure for all types of pediatric cancers.
We have several friends that are desperate for a cure right now...after having exhausted all that is available. We have lost so many friends, and we just want to do our part to make sure that kids dont have to suffer anymore.
As for my kids.....they are still on a "camp high".....Andrew's cabin was called the "Really, Really, ridiculously good looking guys from cabin 5" and Christine's was "The Little Lilos" (they dressed in hawaiian skirts for one of their skits.) Each meal, the cabins had to do a little song and skit...they were fun to watch.....
Andrew's cabin often sang, "Go Bananas! B-a-n-a-n-a-s!" he now goes around the house singing this .....Christine likes to sing her cabin ditty, "boom chicka rocka- chicka rocka-chicka boom....I said a boom chicka....." she loves that little chorus.
I have even more camp pics up.....I wish I could figure out how to get pictures up on the front journal section....but I keep trying and it's just not working...so, new pics in the photo section tonight.
Andrew has been out of school since last Tuesday, as a girl in his class was exposed to chicken pox. He will go back for the last 2 days, which are next W and Th....and in the meantime is at home making crafts and stuff.
Nick toons (his favorite channel) is having a contest....you develop a new cartoon character and you can win a trip to the nick studios. So....Andrew has been hard at work, drawing pictures of "Borle" the mean guy that lost his dog and so now tries to destroy everyone...(dont try to steal that character now!!) He is sure he is going to win!
Medically....Andrew is on 1/2 chemo doses, and will get more labs next week. If his counts come up enough they will increase his chemo. Please pray that he stays protected while not getting all of his chemo.
We hope you all are having a great start of summer!
Love,
Kim
Monday, June 5, 2006 11:58 AM CDT We are baaaaack!
The kids had a BLAST at camp! They were eager to try new things and make new friends, and I was very proud of both of them.
They were put into groups according to age/sex, and ate, slept, and played with their group. Usually the kids arent in a group until they are 4 (little ones stay with their moms)...but I knew that Christine would be disappointed if she wasnt part of the action, so I asked - and they let her join the girls 4-7 year old group. It was great....she was able to ride on the bus with her group (parents drove up separately)...she did everything with the girls and was so mature.
Some of the activities they enjoyed; horseback riding, canoeing, jewelry making, tie-die shirts, swimming, and of course, hanging out with their cabin mates and eating snacks.
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Christine boarding the bus for camp, with her counselor Marisol.
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Andrew enjoyed the jewelry making craft
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Christine leisurely floated around the pool.
Andrew was eager to sleep in a top bunk - which he did the first night. We asked him how it went, and he said he slept fine but, "in the morning I was stuck up there and couldnt get down" (no ladder)...so we put him into a bottom bunk for the next night.
Christine was pampered like a princess the entire camp, I dont think her feet ever touched the ground, as people carried her constantly. For those of you that know Christine well.....you know that she is a bit flirty...well, she immediately developed a few crushes, and one in particular to Andrew's counselor, Kyle.
In her typical "do-everything-that-her-brother-does" fashion, she has already begun planning for marriage!! She let Kyle know that she was going to marry him and get him a blue ring, and she would get a pink ring!!
The funny part of it all, is that we found out that Kyle lives one street over from us!! Andrew and Christine both are wanting to go over there already to see him!
Doug and I had a lot of time to relax...we particularly enjoyed watching the kids. We would go watch them do their activities, and got much joy out of seeing them develop their independence and try new things.
We spent time with families we know from CHOC, as well as met some new families. The kids were in various stages of treatment...some still getting chemo, and others that have been done for a while. We saw many "miracle" kids and were encouraged by their stories...we also saw the "long term side effects" in many of the children....a reminder of the devastation of cancer and it's treatments. There were also families attending who had lost their child to cancer...and at night, the campfires were dedicated to particular campers who had gone to heaven since the last camp.
Our hearts often thought of our TNT team...who were up riding around Tahoe this weekend, raising money for research. Coincidentally, camp was located in the shadow of Onyx Summitt.....which is the long, steep road up in Big Bear - where the TNT team goes each season to prepare for Tahoe. We have fond memories of our trips to the ONYX ride, and it was a constant reminder of the Tahoe TNT team.
I have some pictures up of the kids at camp....they are already asking when they can go again. Andrew was very cute, at camp he would shout out to people, "hey, are you coming to the next camp? I am!"
Thanks for checking in...we hope you are all doing well.
Love,
Kim
Friday, June 2, 2006 7:49 AM CDT Hi Everyone,
For those of you that only like the cheery updates, you may want to skip this one. Be warned that it will be filled with lots of griping (more than usual!)
The day started off going to my OB. On the way, I spoke with our Kaiser rep. She reiterated that they will not deny my continuity of care for my pregnancy, I can see my own docs, deliver at Mission, etc. through my postpartum care. Super. I go to my OB's office, and as I begin to tell the girl about my insurance situation, she says, "Oh, yeah, we know, Kaiser called." Super Duper!
Baby sounds great! Kids got to hear her "talk" to them through the doplar (listened to her heartbeat)...they talked back to her. My doctor will now have me go for a stress test twice a week, and frequent ultrasounds with the perinatologist at the hospital - because of my "high risk" status (clotting disorder and 2x day heparin shots.) Ok.....I can do that...wont be able to take the kids, so that is a hurdle, but no biggie.
As I go out to make my appt. with the girls at the desk, they let me know that Im not going to be able to make those appts. because I have Kaiser, and "Kaiser does their own thing." Um, yeah, but remember, the Kaiser gal called and I can continue......well, they didnt know....they want something in writing.....I need to call the perinatologist....
So, I leave a message (still unreturned) for the perinatologist. Call my Kaiser gal and ask for a letter....and then put the whole thing on the back burner of my brain, cause it's only 9:30 am and I dont want to deal with any hangups.
Next stop: the cancer clinic. The Kaiser girl said, "go ahead and go" to CHOC, as they wanted to redo Andrew's labs, etc. She also said, I CALLED THE KAISER PHARMACY AND THEY KNOW TO EXPECT CHOC DOCTORS TO CALL IN PRESCRIPTIONS FOR ANDREW, AND THAT THEY ARE TO FILL THEM, EVEN THOUGH THEY ARE "OUT OF NETWORK" (downside #1 of Kaiser, instead of using my 24 hour neighborhood pharmacy, I get to use one several miles away that isnt open late at night) Fine...off we go.
The clinic went well.....did labs, and they checked his finger which developed an infection overnight (white and filled with puss)...not good to have an infection when your immunse system is so low.....so they prescribed some meds.
So, I call the Kaiser pharmacy, just to make sure that they are all set, as my doctor wants to call in a prescription.....UH...lame guy on the phone says that he cant take any prescription without a member number (which we dont have yet, we just became members that day)...I remind him that our Kaiser rep called...and he does remember her calling, but the girl she spoke with isnt in.
GREAT! fine.....so I go call our Kaiser girl (and can I mention that my cell phone does not get reception at the cancer clinic...so I need to go outside.....and it's painful to walk.....) She was annoyed, because she very clearly told them to take our prescriptions. Luckily, she does now have a member number - SUPER!
Waddle myself back to the clinic, give them our member number....and wait. Waiting for Andrew's labs.....
by 3pm, our doctor tells us that she is so frustrated, as she has spent over 45 minutes trying to call in the prescription and they wont take it. She said, "I am sorry, but we have a busy day here and I cant take any more time away from patients trying to get this prescription filled...you'll need to take them a written prescription and see if you can fill it that way....worse case, take it to CVS and pay out of pocket."
Now...first let me insert, that his labs came back...and while they are still low, they are improving and we can go to camp - YEAH!! Also, they put him back on chemo at the 50 ate. OK!!!
So, now, I am beyond incensed. I have to drive all the way to the pharmacy and haggle with them to take my prescription and fill it. This is not what I want to go through - Andrew and I both have too many meds/dr.s appts/ etc, and I dont want to hit roadblocks every time.
And, I guess it wouldnt have been THAT much of an inconvenience...but I had stuff to do to get ready for camp....and was now in a great deal of pain trying to walk. Oh, and I cant forget that the kids were way over-tired (it was now 3:30 pm) acting up, and on my last nerve.
I drive in the afternoon traffic to the pharmacy, 25 miles away. Let me just say, that those folks are lucky that I had 25 miles of driving to cool off!! I let them know that I was furious that my doctor was unable to call in my prescription....especially since my Kaiser rep had called them TWICE and told them they were to expect and take our prescriptions. The dumb girl gave me some blah, blah blah answer....and I, in my calm and collected manner, told them they would be sued if they ever denied his meds! (maybe a little extreme, but I know that he has 2 chemos that will need to be called in and filled next week, and I better not have any delays!!)
Ok.....call the Kaiser girl...she is gone for the day.....
Now, I realize this isnt the worst of all things.....we have two friends that are facing difficult times...and I am thankful that Andrew is progressing well in treatment....his counts are on the move, we can go to camp......I mean, trying to put it into perspective...but dealing with insurance hurdles, going through the day with my painful back, and dragging along two kids that are excited for camp, and overtired...well, it just wore me out.
Additionally, part way through the day, Andrew remembered that his t-ball party was last night, and since his counts are low, he wasnt able to go....I had hoped he would be distracted by the pending camp...but he wasnt, and he sobbed and cried about having to miss it.
The good news, is Doug picked up the prescription later, and so we have his meds. We stayed up packing for camp and are ready to go!! I will (I am hopeful) have a great update when we return from camp, along with some fun pictures.
Now to our two friends needing prayers..... Our friend Cam has relapsed again!! I lost count (3? 4?) as to how many times he has relapsed....they are way out in uncharted waters, and to be honest, the outlook is grim. But he has a faithful, prayerful mom, and a God that loves him, and we are praying that he will be healed. Please drop them a line, and let them know that you are praying too. Also, a boy from Andrew's school was diagnosed with leukemia a few weeks ago. They have not been able to get him into remission, and have found that his chromosomal typing (thank you new research that allows these chromosomal tests!!) indicates that he will have a poor prognosis with chemo (which is why he isnt responding and not going into remission)..and will need to go right to a bone marrow transplant. Just an FYI about leukemia kids and transplants....the success rates are low...the odds are against them, and the process itself is very life threatening. Please pray for Christian and his family, as they try to find the best options for him. He doesnt have a website, but he is 10 years old, and I his family is asking for prayers.
And while I am on this topic, which leads to the need for more research.....I want to give a shout out to our TNT friends. This weekend is the Tahoe bike ride that Doug has done the past two years. Part of us is sad not to be participating.....but the reason we have not joined in this season, is because Andrew was finally allowed to join in normal kid activities (t-ball, soccer, b-day parties)...and Doug didnt want to miss Andrew's stuff to train. So....it is because of all the good that TNT has done, that Andrew is moving forward, able to go to camp! I have included the now famous picture of Doug and Andrew at the Tahoe finish line 2 years ago.....Thank you TNT for all you do, for making it possible for Andrew to have improved so much!! Go TEAM!! So much more needs to be done, so that friends like Cam and Christian can grow up and live the lives that God intended.
see, now my whining about our insurance issue seems petty.....we have much to be thankful for.
Please pray that our weekend is great....and that our insurance junk clears up....also for friends that are still in the midst of the battle.
Love,
Kim
Wednesday, May 31, 2006 11:22 PM CDT Hi Everyone,
Well, today has been a hectic day.
It is the last day of our insurance coverage at CHOC (and with my OB), so I did my best to get all of Andrew's meds filled before things turn over. Most of his meds are rationed out; you cant get the chemo until the day you need it - no sooner!, and the zofran (anti-nausea med) is doled out 3 days at a time. But I got most of his stuff stocked.
I called Kaiser (and the state dept. of managed health care) to ask what to do......as I have an OB appt. tomorrow morning (they said to go)....and asked what to do to get Andrew's other meds filled and where to go if he were to get a fever (right now, we dont even go to the major ER by our house, because only CHOC has the cancer center...so we always go there.) They said they werent sure, and they would get back to us.
Well.....in the meantime, Andrew's doctor called to say that his ANC (immune level) had bottomed out (418)...and that we needed to stop all his chemo for now. This hasnt happened in months, and it was not what I needed to hear. It is very common for kids to get sick, get a fever, whatever when their immune system is so low....and I have no idea if going to CHOC will be allowed or covered. Unfortunately, fevers and such dont always occur during M-F business hours, so I had hoped to get some direction re: what to do....but nobody called back (or answered my bazillion messages)....so, I guess we go to choc and deal with things later.
Additionally, a girl in Andrew's class has been exposed to chicken pox (her sister has them.) Unfortunately, I didnt get clear info from his school, and sent him to class today. He doesnt need to get the shots, since it wasnt a direct exposure (and anyways, the company that made the shot [vzig] has stopped production, so they would have to give him something else and hope it helped......) But his doctor does not want him to be around someone that could very well be incubating chicken pox, especially with his low immune level....so, he is out of school for the rest of the week.
Now...as for camp, they recommend that we dont go!!! Which, really stinks. They want us to come back tomorrow to redo his labs (and if they look any better, I think we will just go to camp...if they look worse, we cant go.) So, we will go back in for labs (and hope that we dont end up paying the bill for this visit, since our coverage is up in the air.)
Sadly in CA, in part because so many people are in our state without health insurance......the costs are ridiculously high for medical care. Tomorrow's visit will be several hundred dollars ...so please pray that this insurance issue gets settled smoothly and quickly. It's not that there is anything we can really do, but it just adds so much stress.
So, in a nutshell, please pray that Andrew's counts recover, that we can go to camp, that we can continue his chemo, that God protects him while we have his chemo on hold, that we dont end up in the hospital (as often happens with the low immune level)...because the stress of a pending inpatient hospital bill would have me too upset, and that this insurance nonsense is cleared up asap, AND that Andrew's mom doesnt have a nervous breakdown.
On a good note, Andrew started karate this week. It is taught by one of the physical therapists at CHOC, and is a great way to help build his muscle strength in a fun way. He had a great time, and really did well.
Thanks for your prayers and support!!
Love,
Kim
Wednesday, May 31, 2006 11:22 PM CDT Hi Everyone,
Well, today has been a hectic day.
It is the last day of our insurance coverage at CHOC (and with my OB), so I did my best to get all of Andrew's meds filled before things turn over. Most of his meds are rationed out; you cant get the chemo until the day you need it - no sooner!, and the zofran (anti-nausea med) is doled out 3 days at a time. But I got most of his stuff stocked.
I called Kaiser (and the state dept. of managed health care) to ask what to do......as I have an OB appt. tomorrow morning (they said to go)....and asked what to do to get Andrew's other meds filled and where to go if he were to get a fever (right now, we dont even go to the major ER by our house, because only CHOC has the cancer center...so we always go there.) They said they werent sure, and they would get back to us.
Well.....in the meantime, Andrew's doctor called to say that his ANC (immune level) had bottomed out (418)...and that we needed to stop all his chemo for now. This hasnt happened in months, and it was not what I needed to hear. It is very common for kids to get sick, get a fever, whatever when their immune system is so low....and I have no idea if going to CHOC will be allowed or covered. Unfortunately, fevers and such dont always occur during M-F business hours, so I had hoped to get some direction re: what to do....but nobody called back (or answered my bazillion messages)....so, I guess we go to choc and deal with things later.
Additionally, a girl in Andrew's class has been exposed to chicken pox (her sister has them.) Unfortunately, I didnt get clear info from his school, and sent him to class today. He doesnt need to get the shots, since it wasnt a direct exposure (and anyways, the company that made the shot [vzig] has stopped production, so they would have to give him something else and hope it helped......) But his doctor does not want him to be around someone that could very well be incubating chicken pox, especially with his low immune level....so, he is out of school for the rest of the week.
Now...as for camp, they recommend that we dont go!!! Which, really stinks. They want us to come back tomorrow to redo his labs (and if they look any better, I think we will just go to camp...if they look worse, we cant go.) So, we will go back in for labs (and hope that we dont end up paying the bill for this visit, since our coverage is up in the air.)
Sadly in CA, in part because so many people are in our state without health insurance......the costs are ridiculously high for medical care. Tomorrow's visit will be several hundred dollars ...so please pray that this insurance issue gets settled smoothly and quickly. It's not that there is anything we can really do, but it just adds so much stress.
So, in a nutshell, please pray that Andrew's counts recover, that we can go to camp, that we can continue his chemo, that God protects him while we have his chemo on hold, and that this insurance nonsense is cleared up asap, AND that Andrew's mom doesnt have a nervous breakdown.
On a good note, Andrew started karate this week. It is taught by one of the physical therapists at CHOC, and is a great way to help build his muscle strength in a fun way. He had a great time, and really did well.
Thanks for your prayers and support!!
Love,
Kim
Tuesday, May 30, 2006 0:13 AM CDT Hi Everyone,
We have had a fun and busy weekend. Doug was travelling all week and returned home late Thurs. night, so the kids really enjoyed spending a long weekend hanging out with him - they miss him a ton when he is gone.
They had swim lessons on Friday, and were excited that Daddy could come and watch how well they are doing. Early Saturday morning, dad and the kids went on a long nature walk...mom prefered to sleep in :) On Saturday and Sunday, we had some fun at the newest neighborhood amenity; a waterpark. We have a few other waterparks in the neighborhood, but this new one is the best yet, and the kids had a GREAT time!
We finished the weekend with a BBQ and s'mores by the fire ring....which is always a hit.
Tomorrow Andrew goes in for a spinal tap and a couple IV chemos.....he also starts his steroids. If you have been following our updates, you may be asking, "hmmm, arent they going to camp? and Andrew will be on steroids...hmmmm...."
Yeah, that is about what I am thinking myself, praying that Andrew isnt too emotional (read: doesnt throw too many tantrums) while we are at camp this coming weekend. The good news, is all the other families are "cancer families" (not that THAT is good news)...but most of them are familiar with the steroid thing, and more than likely, if Andrew has a meltdown, they will all smile and say, "glad that isnt us this weekend!"
Anyhoo....the kids are excited about camp, as are Doug and I...it should be a great time gathering with people who understand the ins and outs of our lives, who share the same fears, rejoice in the same small milestones.....
As for our insurance dilemna...things are looking good that we will continue with CHOC. We have filed a request with Kaiser, to have "continuity of care" (something that Andrew and I both qualify for...)...and the state department of mangaged health care are also involved, ready to file an appreal should Kaiser deny our request. Additionally, Doug's job will be able to offer us Blue Shield come October IF 4 other people are willing to switch. Doug took an informal poll, and nobody wanted to change to Blue Shield...so please pray that he is able to find 4 more co-workers, as this would allow us to switch back to CHOC permanently (and at a cheaper rate than our cobra.)
I hope you all have a great week!
Love,
Kim
who tried hard not to complain about her own pregnancy during the update, but truthfully my sciatica is so bad that I cant really walk much at all!! :0
Wednesday, May 24, 2006 0:34 AM CDT Hi Everyone,
I have posted some pictures from the Lemonade Stand....the event, "Taste of Ladera" had a lot of activities. Christine's favorite was "surfing", and Andrew loved the rock climbing wall. Of course, one of the highlights of the day, was a visit from "Baby Sammy"..she and Andrew really bonded when they were inpatient for what seemed like months and months together...they both had their tubes (external broviac catheter)...both were tethered to IV poles, and both loved to hug each other. As you can see, they still love to hold each other...friends for life!
As we wind down from the 1st stand, we are thankful for all that have supported this cause....we have made over $600 online, $1100 offline, and over $1500 at the stand on Saturday. That is well over our original goal...and we still have one more stand to go!! A huge thanks to all of you who have contributed....I hope that seeing Sammy and Andrew doing so well makes you realize how much recent advances in research mean to families battling pediatric cancer!
Thanks for all of the encouragement re: our insurance issue. We are moving forward on a few fronts, trying to ensure that Andrew stays at CHOC. Some have wondered why it matters, especially with only 6 mos. left to go....
Well, first, CHOC is literally a second home to Andrew. He was only 2 when he was diagnosed, and has truly been tortured with needles and meds that make him violently ill. It has been the love and kindness of the nurses and doctors that has helped him to get through this...he trusts them! He knows that Mary is the best at putting a needle in his back (sorry Dr. Torno), and that Charmaine (and the BLACK needle) is the least painful at accessing his port. We have had nightmares in the ER or with untrained nurses...trying to start iv's....and Andrew knows that the ER nurses just dont do as well as the CHOC cancer nurses. He has built up a trust, a love and that is hard to replace.
Also, while he is doing so well....we are very aware that he is far from through with this battle. We have so many friends that have relapsed and gone to heaven, with less aggressive leukemia than Andrew. He is one of the highest risk leukemia kids that we know....and the next year and a half still hold a pretty scary relapse rate for him....so we can not be laxed re: his insurance coverage and treatment options. While we are thankful in our hearts that he is strong, we are prepared in case things change, as we have seen with many others, and dont want to have our guard down in the area of insurance.
Lastly, one of the cutting edges of leukemia treatment, is the aftercare. The research on the long term effects is new...since there hasnt been a large group of survivors until recenlty. So they are just now able to meausure and prepare for the lifetime of side effects that Andrew may face. At CHOC, he sees the psychologist and neurologist, to help monitor for possible cognitive and brain damage. He sees the opthamologist, as he is at risk for cataracts and optic nerve damage. He is screened by the cardiology department, as he is at risk for heart damage. He is followed by an endocrinologist, as he is at risk for growth and bone issues..as well as thyroid, and hormone issues. All of these specialists work specifically with the cancer institute at CHOC, and are a vital part of keeping him healthy. Lastly, because he is at risk for secondary cancers, CHOC will closely monitor him, well into adulthood.
So, thank you for your prayers for this area....we are determined to keep Andrew's care at CHOC, and know that God will provide this for us.
Andrew has been doing pretty well this week. His cough is still there, but subsiding. His has his last t-ball game this week, and is excited about cancer-camp that is coming up.
On the dating front...well after some pretty intense weeks of contemplating who he should marry....he told me the other day, "Im gonna be a bachelor pad!" Um, ok, not sure where he heard THAT term...but...that's fine.
I asked if he would get lonely, being a "bachelor pad", and he said, while looking at me as if I were the most stupid person on earth, "well, no! Im gonna have my friends Brandon and Corbin come over, and we are gonna stay up as late as we want, eat s'mores all night long and not go to sleep, and nobody can tell us what to do!"
Oh, ok....nice to see that he is still thinking of the future....
Thanks for keeping us in your prayers....
love,
Kim
PS. here is some insight into how Andrew thinks after spending more than half of his life with cancer....
"hey mom, did you know that Joanie wasnt at school today, she is in Florida."
"oh, that's nice"
"well, not really, what if she went to Disneyworld because she got cancer?"
Monday, May 22, 2006 1:07 AM CDT Hi Everyone,
Just a quick update to let you know that the 1st Lemonade Stand was a huge success!! We had a great time...Doug had to run back for supplies more times than we could count, as we sold over 35 gallons of lemonade!!
As a special treat, we saw some of our CHOC friends that drove all the way to get some lemonade- a reminder of why the event was so important!...thanks to the Guinanes for taking the time out to come support the cause...and for Baby Sammy...who is so grown up now!! Andrew fell in love with Sammy when they spent a lot of time together in the hospital, she is 6 mos. off chemo and has her next set of scans (she had a tumor in her tummy) soon...so please keep her in your prayers.
Our next stand is during the official "Alex's Lemonade Stand - Lemonade Days"....on June 10th.
Andrew is feeling well. Mom is virtually unable to walk, due to the sciatic nerves that are being pinched or inflamed or irritated....
On another note....we have insurance coverage through Doug's old work, via Cobra. At 4:30pm on Friday they called to tell us that as of June 1st, we would be switched to Kaiser!! Yes, they gave us less than 2 weeks notice (which legally we are supposed to have at least 30 days written notice). We have been stressed about this all weekend!
Nothing against Kaiser (for those that have emailed re: their great provision of care)...however, they do not have the comprehensive pediatric cancer center that CHOC has, where Andrew is followed by a team of oncologists, endocrinologist, nutritionist, physical therapist, his surgeons, psychologist and more.... Plus, there is no one treatment for his leukemia...his doctors have tailored things along the way to meet his needs, and they have experienced his growth for the past 2.5 years...I cant imagine changing them now!!
Additionally, I just jumped through some insurance hoops myself, so that I could deliver at Mission (near my home with a CHOC NICU at the same hospital)....and cant imagine changing my doc and hospital in the 7th month!!
So, I will be working on seeing if we can get "continuity of care" coverage, please pray it all goes well.
Will write more and post pics of the lemonade stand later...thanks to all of you who came out to see us (or to Lisa, who sent her daughter!! thank you!!)
love,
Kim
Friday, May 12, 2006 10:46 AM CDT Hi Everyone,
Today is a special day, as Andrew's class is hosting a special Mothers Day picnic. They have been preparing for a while, and Andrew has been so excited. There are lots of special things that will be revealed today, and I am looking forward to spending time with my big boy.
Last Mothers Day, we were in the hospital. We had been in and out for a couple of weeks, as he was having severe bone pain and fevers. Our doctor was worried he may have relapsed, and they did a bone marrow aspirate to make sure he was still doing ok. They also did a lot of tests re: his bone pain at that time, and discovered the osteopenia (thinning of his bones)...he was put on some medicine (neurontin - which he still takes 3x day) and it has really helped him. When I read back in the journal at that time, I also note that he was finally able to start going up stairs....and I think of where he is now, and I am so thankful for all the healing and growth that has gone on in his life this past year.
When Andrew plays t-ball, I often hear the other mothers brag about how skilled their kids are....and since Andrew is the only kid that doesnt use a real bat (he uses the plastic whiffle bat, because he isnt strong enough to swing the real kind)..and he is the last one when they run....it may seem like he isnt a super star athlete....HOWEVER....I know how far he has come, I know that his little bones and muscles are in pain and have been thrashed....I know that his hemoglobin (blood counts) is so low that he has limited oxygen and gets tired easily...I know that he is still on chemo and just doesnt feel as good as everyone else....yet he still gives it his all with his bright smile, laughing and socializing along the way...and I couldnt be prouder of what a strong and determined little boy he is, and I know when this is all over and his body is strengthened and his blood counts are normal and he isnt taking chemo everyday...we will really see him blossom!
As for Andrew's health....his cough only seemed to get worse, so we went to the clinic on Tuesday. They did some x-rays to make sure he doesnt have an infection, and things looked fine. So, it is just his body and the side effects of treatment, and maybe some allergies (we have added claritin to his list of meds)...so hopefully that will help him with the recurring sinus/cough issues.
Yesterday, we met up with his sweetheart, Angelica and her brother Alex. The kids played for hours and had such a good time. I have some new pics up in his photo section.
This afternoon, is the kids favorite, swimming....they are both getting so strong and I am really proud of them.
Also....we have signed up to go to a family camp for kids with cancer. We have wanted to go for a while, but the camp dates always conflicted with our Team In Training events. Since Doug is not riding in Tahoe this year, we will be able to attend camp. The entire family will go, but the bus ride up to the mountains is just for the kids (we will follow in our car)...and Andrew will also stay in the kids cabin....he is VERY excited and so are we....thankful for all of these milestones that God is allowing us to experience with Andrew.
I hope you all have a great weekend!!
Love,
Kim
Monday, May 8, 2006 9:30 PM CDT Hi Everyone,
We had a nice weekend. The kids got a lot of "nature walks" in with dad on the trails near our house (they like to look for creatures)....and also got plenty of "jeep riding" time...on a battery powered Jeep that Andrew got 2 Christmas's ago.
Andrew has developed (again - sigh) a cough. The chemo causes extra mucus, and then he ends up getting sinus/ear problems. It is a never ending battle that many of the kids face at this phase of treatment. I wanted to keep him home for a day, to see if it was anything real (if it was, he would have developed a fever)...but he seems fine otherwise, so will probably go to school tomorrow.
His doctor called, and they are going to increase his chemo a tad bit. His "growth spurt" has earned him an extra 1/2 tab of chemo, every Sunday. You wouldnt think that 1/2 tab would make a difference....but I remember when Christine accidentally ate a partial tab of the same chemo, and it was a big deal, where we had to take her to the ER and they wanted to keep her overnight, etc. Yet, Andrew takes this same chemo everynight, and more! Hopefully the extra boost will ensure that the cancer is being kept in checked and completely rid from his body.
I hope you dont mind that a take just a minute to complain about how uncomfortable I am.....(I know, I've already done more than a minutes worth, but just bear with me.) Im really doing my best to get along with all of this and be as strong as Andrew...but it isnt really working. It doesnt make me feel any better that nothing fits me....the other day, when leaving the ob's office, a little girl (there with her pregnant mom) in the waiting room, said, "hey mommy, we have that shirt too!" I laughed and noted that you get to a certain point, that the stores only carry a few shirts...and every pregnant woman wears them (except for the size 2 pregnant woman...and that's a whole nother journal entry!!) My pregnancy wardrobe consists of 3 pairs of sweats and 4 t-shirts (all stained!) In fact, if you must know, I did not attend Easter services with my family (luckily our church is broadcast on the internet, so I sat here and watched Andrew in the choir.) I told Doug I didnt feel well, but the truth is, I just didnt think my Winnie the Pooh cropped sweats and stained brown t-shirt would be acceptable attire. Im not a fancy dresser, and my church is pretty casual, but that seemed to be pushing things, so I just stayed home.
Personally, Im on the verge of ending up on an episode of Oprah. I figure Im either gonna be on the one where they have to tear down one of the walls to my house, and hoist me out of bed with a forklift...cause, yeah, Im getting to that point. OR, I may be featured when they show videotaped footage of someone's home....and the audience gasps in horror at how messy it is (as I've pointed out to my family, eggs dont bend, so please dont expect me to pick things up off the floor!) Either way, dont be suprised if you see me on her show soon!!
Well, that's enough for now....Im going to go and be thankful for this little cutie, and pray for her early entry into the world!
Love,
Kim
Saturday, May 6, 2006 10:19 PM CDT Hi Everyone,
I hope you all had a great week.
Andrew did well with his iv chemo on Tuesday. He has had some back pain this week, and I have noticed he has had this the past couple of months, we will keep an eye on it (the chemo can cause some muscle spasms). He is in the midst of steroids, which seem to be very intense this time around. He had more than few meltdowns (mostly over food, like garlic bread and pastami and bacon sandwiches), and even shouted a few crazy things, like, "the whole world is a terrorist!" He also had his mushy moments (the steroids do that too!)
We had a close friend of mine come to visit for a few days, and she brought her adorable, 11 month old son. Andrew swooned over him the entire time, and when my friend left...Andrew said, "he is the sweetest thing I have ever seen, Im gonna miss him, I wish he was my brother."
Actually, Andrew and Christine both a had a great time smothering Jake and making him smile....I know they will both have such a great time with the new baby.
Speaking of the new baby.....my doctor agreed to pencil me in for July 31st.....but I am open to prayers that my water breaks early (it broke 3 weeks early with Andrew.) But at least I feel as if there is a light at the end of the tunnel, with a date picked out. As it is, I cant walk much (I was hit by an 18 wheel truck when I was in my early 20's, and it has wrecked havoc on my back, knees, etc.....so when I get pregnant, the whold skeletal system seems to give way.) The nausea is better...still tired, but that seems to be getting better too.
Back to Andrew....the doctors like his blood counts to be in a certain range......below normal but not critical. His counts have been a little high lately, so they are going to see about increasing his chemo to bring him back down...I should know on Mon or Tues about that. It is sometimes a fine balance to find the right dosage...so the counts are low enough to indicate they are fighting the cancer....but not so low that they wipe the kids out or cause damage.
He had a t-ball game today....and with his steroid cravings in full swing, was motivated to catch balls....with the reward of going to Burger King. He did get a ball...but by the end of the game he was back to his "pastrami and bacon sandwich" craving again....
Thanks for checking in on us, we appreciate all of the love and support!!
Love,
Kim
Monday, May 1, 2006 10:26 PM CDT Hi Everyone,
The kids enjoyed a great weekend....truly filled with all those fun things that life has to offer!
Friday was swim lessons, which is akin to going to Disneyland; they just love showing off their skills. Afterwards, they had dinner with some good friends, and although things got a little silly, and Christine, in the midst of goofing around, dropped her ice cream sundae on the floor (broken glass and melted ice cream)...it was overall a great time.
Saturday, ....Saturday...what a fun day! It started with T-ball, and it was Andrew's turn to be the "captain"...which included playing "pitcher" for an inning. Now, in t-ball, they use a tee...they dont have a pitcher....but he got to stand on the mound, which did help his concentration! He is just now sort of getting the idea, that you are supposed to catch the ball that is hit....still not really understanding the part where you then try to get the person out, but it's a start! As pitcher, he "caught" the ball 7 times!! It was so cute, the first time, he grabbed it, and held it high in the air yelling, "I caught it! I caught it!"....(actually, it had rolled on the ground and he picked it up, but at least he is getting the idea...) All the while, the parents were yelling at him to throw it to 1st base, and he just kept smiling while holding up the ball, "I caught it!" This went on 6 more times, and each time, he let us know what # it was....very cute!!
In the afternoon, after an hour long tantrum re: everything from doing her hair to putting on her leotard.....Christine had a mini-recital (ballet, tumbling, jazz and tap). Her real recital is in June, and Saturday was sort of a practice....they were added on to the older girls' show.....and they did 2 little numbers, one tap, and one ballet. They also showed off their tumbling skills....it was very cute. Andrew wanted to get her flowers, so prior to the show he picked up some pretty purple flowers at the local florist...and was proud to give them to her afterwards. She was really proud of herself too, she has worked hard to learn her little dances.
Sunday, we had church, and our "day of rest"......
Today, Andrew had fun at school, and a playdate afterwards with his friend Kate. He already feels overwhelmed by "who to pick" for his long-time wife....I told him he has many years of meeting girls left to go.....Im sure it will ultimately be a tough decision!
Christine and I were able to get more sponsors for the lemonade stand. Now, you might wonder, why we need sponsors.....other than covering costs and getting items donated for the stand, we are also collecting wonderful gift certificates to raffle off....we are very excited, as things are already off to a great success, and I haven't even officially "launched" yet!
I do want to mention our sponsors here...because I am truly grateful for their support. It is not easy for me to schlep into store after store, I feel like a slimey salesman trying to pitch a deal...very akward at times!! I also know it is not always easy for our merchants to donate....it gets expensive!! Yet...the following folks make me feel so supported...they truly care about Andrew, the kids in our community, and all families battling pediatric cancers....SO....please, visit our sponsors, if you are able:
Party Land : for donating balloons and supplies
Pavilions: for allowing us to have a stand on their property
Taste of Ladera: for generously donating a booth at their event
Ladera Ranch Realty; June Radke: for a $200 donation towards our cause
www.sugarcreations.com: for donating lemonade stationery
Pacific Sign Center: 3'x 8' banner for the stand
The following items will be raffled!!
$100 gift certificate to Divine Treasures
(4) $25 gift certificate to Beach Fire Grill
$50 gift certificate to Bundles of Joy
$25 gift certificate to Cosmos Italian Kitchen
$25 gift certificate to Southern Living at Home; from Consultant Jeni Pickard
$25 gift certificate to www.luxemama.com
(2) lunch for 2 at Pick up Stix
TBD item from Toy Town
gift certificate to Picante
gift certificate to Togos
and the first 100 customers will receive a coupon for free cream cheese wontons from Pick Up Stix.
I hope you will be able to stop by one of the stands....the info is listed on Andrew's "lemonade stand" site, the link is higher up on this page.
Tomorrow...Andrew goes in for his IV chemo....please pray that it continues to do the trick, and that he doesnt feel too yucky.
Love,
Kim
Friday, April 28, 2006 3:54 PM CDT Hi Everyone,
Andrew's new antibiotic seems to be doing the trick, as he hasnt complained about his ear in a few days. We go back for his iv chemo on Tuesday, and they will recheck him at that time.
Doug has been gone most of this week and last week, on business trips. He doesnt usually travel much, but thankfully they have had an influx of new business. The "down" side, is that Im not that good at being a single mom...especially a pregnant one. The "good" side of the the down side....is that Doug owes me for leaving me to tend to the kids alone, and has agreed that payback will be to clean my car, affectionately (well not so much affection) called the "crap-mobile" by Doug and the kids. It is filled to the brim with papers, toys, lost shoes, and Im sure a lot of other things that I lost a long time ago. The kids and I are looking forward to Doug coming home tonight, and I am looking forward to a clean car.
Things are moving forward with our plans for the lemonade stand....our donors have all been more than generous (please check out their names/links on Andrew's lemonade webpage) We are still working on our gift certificates for the raffle, and our first stand is in less than one month!!
The legacy of Alex Scott is pretty amazing....this little girl started the lemonade stands which have now funded all kinds of pediatric cancer research. We pray that in the future, less families will have to endure this painful experience.... Ray , Donovan , and Cam are going through particularly tough times, and we hope that one day families wont have to endure this type of struggle anymore.
Have a great weekend!
Love,
Kim
Tuesday, April 25, 2006 11:44 PM CDT Hi Everyone,
Well, despite being loaded up on antibiotics, Andrew's ear infection was getting worse. He usually doesnt complain much, but it kept him up last night, so we decided to head into the clinic today.
We arrived at 9:30 and left at 1:00....long day, but you know, we just love the staff there! It always brings a smile to our face to see our favorite nurses, doctors, nurse practioner and office staff.
They also did some blood work, to see what Andrew's Immunoglobulin G levels are.... we got the results back, and they are below normal, but not low enough to warrant transfusions. Im not really sure if we should expect these numbers to improve on their own after treatment, or what (lots of kids who have gone through chemo need these infusions regularly, even for a while after finishing treatment.) We will have to wait and see how things go.
They did switch Andrew to another antibiotic, and will check him again next week.
Today being Tuesday, he got some chemo...and tonight....he took 11 pills, downed them all at once with one quick swig of water. My boy has surely grown up (far cry from the days where we had to wrestle him down and practically drown him to get in 1 pill.)
Tomorrow is a t-ball game - a make-up, although it may rain, and postpone the game even further.
Thanks for checking in...we are grateful for your continued support and prayers....thankful every day for the progress God has made in Andrew!
Friends that are really fighting right now... Ray's Page , Donovan's Page , Cam's Page I know all of their parents are desperate for prayers....please stop by and let them know you are with them as they cry out to God to heal their children.
Love,
Kim
Monday, April 24, 2006 11:09 AM CDT Hi Everyone,
Andrew started back to school today. He was excited to get back. Over the weekend, he made himself a laptop computer (out of construction paper), and "typed" out an email message. He brought it over and I saw that he had written at the top of his "computer screen"; jordanursopridy
Jordan is a girl in his class, the one girl that really doesnt give him the time of day.....the one he swoons over at home...."I wonder why doesnt Jordan ever like to play baby?" he always ponders.
I asked him if he was going to give that message to Jordan, and he said, "no, it's an email, but this isnt a real computer so I cant really send it!" as he looked at me like, "duh!"
So, he was glad to get back to school...to the fun...to all the pretty girls.
This morning he complained that his ear still hurts. He has had an ear infection for weeks, and has been on Augmentin for 2.5 weeks. He is also always on bactrim.... I emailed his doctor about his ongoing sinus infections and inability to break free of them. She is going to have his IgG (immunoglobulin G) levels checked at our next visit. IgG levels can typically get low with long term steroid use, and limit the bodies ability to fight infections - very often sinus infections. It is not uncommon for kids on chemotherapy to eventually need infusions of IgG to help them fight off common infections in their body. Im hoping that if we get this going, Andrew will feel much stronger. I am always amazed at how he goes through life, seeming "normal"...when I know that he feels so run down by all the chemo, his body aches, and even his low levels of oxygen (due to his low blood levels.) I have heard that when taking IgG, the kids really feel a lot more energy.
This morning, on the way to school, Andrew said that he and his classmates were going to create a list of what rides they would go on at Disneyland. Yes, he is still planning his big 16th birthday bash at Disneyland...he is bringing his little sisters, and his classmates. He has everyone so excited about this trip....I have had a couple parents come and tell me, "Andrew invited (insert child's name) to Disneyland for his birthday." I kindly let them know that would be his 16th birthday....so their child wouldnt have any expectations of going soon.
He was asking how much things would cost...we told him the limo he wants would be about $200 (he was flabbergasted!). We figured that 12 kids, at 4 kids per room, would require 3 rooms....times 5 nights.....at the California Adventure hotel....wouuld be at least $3,000. And then, there are tickets to get in the park everyday....food,...etc.....
He quickly decided that the trip might have to be postponed until he is 19...because you have to be 18 to go on "Deal or No Deal"...and that is his new plan to finance the trip...go on Deal or No Deal and win the money.
He is so funny how he plans this all out!!
While I was laying around the house on Sunday, trying to position myself in ways to avoid the major karate kicks given out by baby sister, I watched a few of the "Sweet 16" episodes on MTV.
Have you seen this show?? Kids throw this big Sweet 16 parties...all videotaped and made into a little show.
There are no expenses spared, as mom's take their daughters to Europe or Rodeo Drive to find the perfect dress for the party (often costing in the thousands of dollars)....the parties are elaborate, and the kids throw major tantrums if they dont get the car, band, table decorations that they want!
One of the saddest parts, was watching the kids do their invitations.....it was always a major deal to make the invite list and give out the invitations.....and it became clear that they werent making a list of friends....but made their invitation lists based on "who was popular"...so, often, they were inviting kids they didnt know...just so that their party would be a hit, and then people would like them....really, so sad!!
Doug and I (yes, he watched them too)...were sad to see people waste hundreds of thousands of dollars on parties...so their kids could try to be popular.....when so many families we know are facing financial problems just trying to save their kids lives.
We did laugh at the fact that Andrew is already planning his Sweet 16 extravaganza to Disneyland...but luckily he has already learned that he is in charge of the bill!! (however Doug did tell him, that if he saved enough money to take his siblings and friends on such a fun trip, that Doug would kick in for the limo, LOL)
We are looking forward to a good week.....thankful that Andrew is doing well.
Thanks for your prayers!
PLEASE SAY EXTRA PRAYERS FOR OUR FRIEND CAM.... he went into septic shock this morning, and needs our prayers to get through Cam's Page
Love,
Kim
Tuesday, April 18, 2006 12:08 AM CDT Hi Everyone,
We hope you enjoyed your Easter (or Passover, or the weekend in general.)
Andrew sang in the choir at church...they sang two songs, and it was pretty hilarious...the first song, he just stood there with his hands in his pockets, doing a light head nod- but wasnt particularly interested in singing.
The second song, he belted out the words, played a mean air-guitar and air-drums throughout, and really entertained the crowd.
The kids got baskets with some goodies. The Easter Bunny tries to keep away from too much candy (except for mom and dad!) and so a little bit of candy was accompanied with a toy. Now, the Easter Bunny had every intention of getting the kids pool toys, specifically, the weights that you throw into the pool and dive down to get. What a great gift, right?? I knew, er, I mean, the EB was sure the kids would love them. AND, the Easter Bunny knows just where to get them (aisle next to the florist at Albertsons).....unfortunately, the influx of holiday candy caused store management to take down the fun pool toys....so there were none :( And, since the EB did her shopping at the last minute, she was stuck as to what to get for the kids (it wasnt going to be more candy!) Well, Christine loves dress up shoes, and Albertsons has them...so that was easy. Andrew on the other hand, has been obsessing on a pair of hand-cuffs that he saw at the market...and wouldnt you know, it seemed to be the only toy left at 10pm on Easter eve!!!! So, the EB went against her better judgement and got Andrew the handcuffs, and now we are all paying the price....as he has been on a cuffing frenzy!!
I had put up Easter pics from this year and last year, and you can really see how much Christine has grown (and you also may have noticed that Andrew no longer has a black eye, and Christines lip and nose scabs healed....yes, luckily this year we had less facial injuries....Easter 2005 looked as if the kids had skidded on their face prior to their photo meeting with EB)...and yes, Aunt Jacque, you are very observant to notice that EB has not changed much....same outfit and all! Although, they did spring for a new bench.
Anyways, I have put up a picture from Easter 2004, and you can really see how much God has done in Andrew over the past two years!! We are thankful for the healing that is going on, and pray that it continues.
Many people have asked us if he is "cured"....not to be confused with the people that thought he finished chemo a year ago.....He still has a tad over 7 months to go with treatment, and according to research, he very likely still has leukemic cells circulating through his body...which is why we need to keep him on the chemo. After he finishes, we sort of hold our breath, and pray that the leukemia was completely destroyed. Healthy coloring and a full head of hair, unfortunately is not a good indicator that the cancer is gone. In fact, our sweet friend Hunter , had finished her treatment, and then had her port (central line) removed...she was celebrating that she was all done....and then, her cancer returned. Many kids have their cancer return after treatment....and in our case, the 1st year off chemo will be the time where we need the most prayers. ....enough of the cancer lesson for today....
Many of you have contacted us re: Andrew's Lemonade Stand.....well really, "Alex's Lemonade Stand" and Andrew is holding one of the many stands ( I want to make sure that Angel Alex gets full credit for the vision and success that continue on in her name).... He is very excited, and we have just started getting sponsors (we are raffling off a lot of wonderful gift certificates, as well as selling lemonade.) We have set up a separate website with info on our 2 stands, our sponsors, etc. We also have a pic up on that site of Andrew at his stand last year. He made his own sign that reads, "Lemonade $1 Help Kids Get Better From Cancer love, Andrew" He was so proud of that sign!! You can visit that site at: Andrew's Lemonade Page
I have also put up a new picture of Andrew at Sea World...there were so many great pics, but I have put the one of him almost jumping in to swim with the dolphins!! He had so much fun.
He is off school this week for Easter Break...and we are pounding the pavement getting Lemonade Stand sponsors, and also getting in lots of outdoor play ...probably swimming too, as it is supposed to be in the high 70's today :)
Thanks for checking in on us.....
Please consider supporting our friend Donovan...they are having such a hard time. The good news, is that Donovan's testicle was not cancerous (he had surgery to remove it last week, as they thought it was cancerous, but it actually turned out to be filled up with the mono virus.) When your immune system has been depleted it is hard to fight off any infection, and apparently the mono virus has really taken a hold of his body. They are struggling to stay at Duke Hospital...which is where they need to stay if Donovan is going to overcome the odds....please visit there site, they have a link where you can make a donation...even $5 would help so much...with hundreds of people visiting his website each day, if everyone could just donate a few dollars, it would really help them be able to continue his life-saving medical care. Donovan's Page
Thanks a bunch,
Love,
kim
Sunday, April 16, 2006 0:29 AM CDT What a fun weekend we are having....
Friday, Andrew had an Easter party with his class, and then had a friend over for a playdate. Unfortunately, the steroids reared their ugly head, and he had a near 2 hour meltdown, to the tune of his friend asking if he could leave early, which then made Andrew more upset...it was sort of pathetic, he was begging for his friend to stay.
BUT, things got better, as we had our swim lessons. Andrew is in hog heaven when swimming, and he is really getting stronger in his arms. It made for a nice end of a busy (probably too busy) day.
Saturday, we headed south to Sea World. Our favorite kids group, Hi-5 (Emmy nominated kids show, seen on The Learning Channel and Discovery Kids) was performing....a perfect reason to go! We arrived early and the kids got to watch the group do their sound check....Jenn remembered Andrew from before and remarked at how his hair has grown in. Andrew asked Jenn to wear his compass ring (the group sings a song, "north south east west...") of course, I cheesily asked if we could get the plastic dime ring back after the show, since it was a favorite of his, and she was happy to do that. Anyhoo....the kids really enjoyed the "warm up"....but Andrew, who just tires so easily, slept through most of the real show. But Christine had fun, doing all the dances and motions...she is really growing up.
Another high light of the day....was the dolphin show. We arrived early, and an employee approached and asked us some questions....particularly, would Andrew like to pet and feed the dolphins...well of course he would (he actually was going to ask Make-A-Wish to swim with the dolphins, but didnt meet the height requirements.) So, he was excited.
Well,.....if you have ever been to Sea World, they do this little routine, where a tourist family gets to go down and pet the dolphins, etc. Except, the mom falls into the water!! THEN, with great drama, as she is struggling to get out of the pool....the whale comes and pushes her through the water....she grabs onto the fin and rides him.....
Now, dont worry, I wasnt the mom....Andrew and Doug had a fake mom, who is really an animal trainer at Sea World. They were this mock family, that interacted with the dolphins,, until the mom falls in....it was a lot of fun. Andrew got to wear rubber boots and go out on the ledge to feed them. He almost jumped in himself to swim!!
So, it was a really fun day....we got home late, and will get up early for Easter service in the morning. Andrew is singing in the choir for two services.
I hope you all have a wonderful Easter. This is the season that reminds us that death has no power over us. Even horrible things like cancer cant destroy us, because Jesus has paved the way to live forever with Him in Heaven. We hope that you enjoy the glory of Easter, and all the promise that it holds.
Love,
Kim
Ill get some pics up of Sea World soon.
Wednesday, April 12, 2006 5:40 PM CDT Hi Everyone,
We are enjoying a great week.
Andrew's side effects from his steroids are pretty much gone (I say that knocking on wood, as I dont want to tempt fate and end up with him having a mondo episode as soon as I finish this journal entry.) He usually has some increased bone pain, and this month it was his back. We know other kids that really feel it in their back, but for him it is usually his arms and legs...but luckily he is feeling better now.
He had a fun, long anticipated, play date with his friend Kate on Monday. She is tall, blonde, affectionate and beautiful....and when her mom brought Andrew home, she said that Kate carried him around on her hip, and Andrew had his arms wrapped around her neck. I'm sure it was pure bliss for him!! He has started to grow....so it wont be long before he wont be able to take advantage of his lightweight size....and the girls wont be able to carry him anymore, LOL.
He has some fun, male playdates set for the rest of the week....so we can balance things out!
Today has been nice and warm, a great reminder that summer is a comin'. Summer means; Andrew will get to swim a lot, we will celebrate the birth of our baby girl (can you tell I am anxious???), and we will hold our 2nd annual "Alex's Lemonade Stand."
Actually, we will hold 2 stands this year. Andrew had so much fun last year....despite it being a cold and rainy day, we raised over $600. He had a great time passing out cups of lemonade, he made his own sign - which he was proud of....this year he is even more excited.
I will also be holding a raffle this year. Many of our local merchants have donated gift certificates and prizes to be raffled off. I have just started working on this, and so far, everyone I have asked has been eager to help.
I must say, that we live in a small community, with some new "mom and pop" type stores....not big, billion dollar chains....and yet these folks are always so willing to help our cause. It means a lot to me to have such great support from our community...and I pray that God blesses all of them for their kindness.
We have started a webpage with info on the lemonade stands Andrew's Lemonade Stand Page Ill use it to keep you posted on the upcoming stands.
Please pray for us as we work on this venture...that God helps us raise money that will lead to a cure.
Speaking of the need for a cure...I am so heartbroken to say that Baby Donovan has relapsed again. His parents are trying so hard to keep things together, financially, emotionally, and medically....for their boys...and this is a devastating blow. Please send them some kind words Donovan's Page It might interest you to check out the picture of Donovan before his transplant. He looked soooo different. Now he is very chubby with lots of dark hair...it is amazing how the meds can change the kids looks. Some things that have not changed, are his twinkling blue eyes, bright smile, and his fighting spirit. Stay strong Baby Donovan, we are praying for you!!
Have a great week!
Love,
Kim
Sunday, April 9, 2006 7:33 PM CDT Hi Everyone,
The kids had a great weekend, (Andrew's steroid moments aside.)
Friday I decided to take them to see the Easter Bunny at the mall. I got them all dressed in their new outfits and off we went. I wasnt sure if Christine was over her "character fears"....so before we left, I showed her pictures of her visit with EB last year, where she was smiling and not crying - I thought that would embolden her to be friendly and eager to see him- WRONG!
We were sort of rushed, as the Easter Bunny was getting ready to go on a break, and was going to squeeze in us and the family waiting behind us.
Well, Christine begins to cry....absolutely refusing to get near him. Normally I would just have them take the picture with her crying, but she was running away....well out of camera range! So, I tried to coax her to get close to him....and she finally did, and managed to smile. Unfortunately by that point, Andrew was so bored with the whole thing that he looked like he was ready to take a nap in the picture. (It's posted in the photo section, I put this years and last years, so you could compare how much they have grown, and how much Christine has regressed in the "character" dept.)
Saturday, the kids went with Grandma J to the Santa Ana Zoo ( a local zoo, with a train, elephant ride, and some small animals to pet.) They had a great time! The got to sleep over too - which is always a treat.
Sunday, Daddy took Andrew to the Angels game, and Christine and Mommy shopped at the mall. It was a fun day.
Andrew's has been very emotional this round of steroids, but luckily nothing too terrible (except calling me "diarrhea")
When I picked him up from school on Thursday, his teacher said she wasnt sure if he was tired or perhaps mad at her. She had asked him to come and do an art project (which he normally loves to do)...but had to pull him away from "free play" time in order to do so. She said that Andrew kept saying he was "bored."....she wasnt sure if that meant he was tired, OR (and this is probably it)...he was a little upset, because he was playing house with the girls when she called him. She said he was sitting in one of the girls laps, getting his hair stroked when it was time to come to the table to paint! Well, I know that was probably it, as there is nothing Andrew likes more than playing house with the girls and being the baby.
When we got in the car, I asked him if he was tired, or just upset that he got pulled away from playing baby...he looked at me with wide eyes, mortified and screamed...."You arent supposed to know about that!".... I reminded him, that Im his mom, he was made in my tummy, and I am fully aware that his favorite game is playing house and being the baby (he has always been very open about this before.) Well...he did not want to talk about it!
Now, Doug is very concerned that Andrew likes this "baby" game...and is sure it has something to do with being nursed until he was 3 1/2. I on the other hand, like to think that Andrew is just socially mature, with a mad crush on several of the girls in his class....and he knows playing baby is the way to get some affection.
In any event, one thing is for sure, when he gets old enough to read this journal, he'll probably be mad at me and do more than just call me diarhhea!
Thanks for checking up on us....we appreciate your love and prayers, as well as your messages.
Please continue to pray for our friends that are going through tough times. Baby Donovan in particular is really struglling, and had to be readmitted to the hospital. This is very difficult for his family...not just emotionally but financially too...please send them an encouraging message Baby Donovan's Page
Also, another little girl in our neighborhood was diagnosed with leukemia this week, and her parents are going through that awful first week (which feels more like life's worst nightmare.) (This is the 3rd child in 2.5 years....to be diagnosed with ALL in our neighborhood. Granted, 1 out of every 300 children will develop a pediatric cancer...but this is more than what we should expect, and makes me wonder what might be blowing in the air!!) Please pray for her and her family!
Love,
Kim
Thursday, April 6, 2006 12:21 PM CDT Hi Everyone,
We have had a busy, but good week around here.
Andrew had his visit with the opthamologist...his first time. We warned him ahead of time that he would get drops in his eyes, and his eyes might get blurry...but that it would be temporary (I made sure to tell him, because when he first had his mouth numbed at the dentist he was upset, thinking his mouth might stay like that forever!)...so, I thought it was a simple thing, let him know ahead of time, and that things would be fine. I also reassured him that there would be no needles, pokes, bone marrow aspirates, etc.
Well, Andrew screamed and fussed more than he ever has, when the doctor put the drops in. I had to hold him down while he kicked and wiggled, he squished his eyes, refusing to let the drops roll in....it was quite a scene. We then had to wait in the play area, for his eyes to dilate. A few of the kids in the play area approached him and asked, "Did you cry when you got your drops?"...like, 'are you the giant baby we could all hear screaming throughout the office?????'
If I hadnt witness Andrew take on radiation, where his head was bolted to a table under a tight mask...withstand long, thick needles into his back with no pain meds, and withstand months of nausea like a trooper....I WOULD think he was a huge baby...but I know he is brave, and just have to jot it down as a funny experience...that EYE DROPS would make him freak out.
He is handling his chemo well...his blood counts are still low, but in the range where we like to see them. His mucositis has been bothering him (the chemo breaks down the cells in his mucus membranes...causing a build up....this happens throughout the digestive track and oral cavity. It means he has a few sores in his mouth, and also a lot of mucus buildup.) We have added an extra antibiotic (he is always on antibiotics, due to his high susceptibility to pneumonia)...he currently has developed a sinus infection from all the mucus, but Im hopeful that it will clear up in a few weeks.
I think Andrew is already feeling the effects of his steroids. We had plans for a "game night" but we had a busy night and didnt get to play Candy Land as hoped. Andrew became very upset and screamed at Doug and I, calling us, "Cancellers"...for cancelling game night! He also woke up this morning screaming and crying, afraid that he had missed the opening song of "Trolls" ( a cartoon on TV). Hopefully his emotions will mellow out a bit.
I went to see my OB, and all is well with little sister. We give her a new name each day...the kids get to pick. This week alone she has been; Cindy, Lauren, Roxy, Happy, and Angelica. She is quite a kicker, as she seems to move around more than the other two did, and she is already so strong! I asked my doctor if we could set the date for my c-section, and he laughed at me!! He said it is so far away, that we can do that later. That was sort of depressing, as I think it would help me psychologically, if I could have a date to focus on (and not have people tell me 'it is sooo far away'...that doesnt help!!!) Also, I know Grandma J and Daddy would like to be able to plan their time off from work (I told the doctor THAT, and apparently it wasnt a good enough excuse.) Anyways, we keep plugging along......
Im hoping to take the kids to see the Easter Bunny in the next few days, in their Easter outfits, Ill make sure to get pics to put online.
Thanks for your continued prayers for Andrew....I am amazed everyday at how strong he is through treatment, and I know it is because he is being surrounded by faithful prayers.
Love,
Kim
Monday, April 3, 2006 0:17 AM CDT Hi Everyone,
Andrew had an enjoyable weekend, and his legs have not had any more problems...thanks for your prayers!!
Saturday, his t-ball game was rained out, so Grandma J took he and Christine to the movies to see Ice Age 2. Of course, they got to eat some treats at the theater...the kids had a great time.
Sunday, Daddy took the kids on a "nature walk"...we are fortunate to have a lot of playground/parks, as well as trails in our area - there are coyotes, mountain lions and other scary stuff if you venture too far. After playing on the fun stuff, the kids took a walk on the trail. First thing they saw was a rattlesnake, which Andrew and Christine both thought was so cool.
Tomorrow begins a busy week....Andrew will have his appt. with an opthamologist. We want to make sure his eyes are doing well..he is at risk for cataracts from his radiation, but he has not had any symptoms/problems, so we expect this check up to go well.
This is also the first week of the month for his chemo, so he will get a lot of stuff this week, including steroids and his IV chemo on Tuesday.
I will get to squeeze in my appt too, with my ob...and am going to do all I can to get my scheduled c-section date. I want to have the baby at the earliest possible date, and fear if I wait to get my name scheduled, I will end up being pregnant for a day or two more than necessary....which I am not interested in....so, Ill let you know if I get the birthdate scheduled.
Thanks for checking up on us....we are so thankful that Andrew is doing well with his treatment, and are grateful for the thousands (millions?) of prayers that have been said for Andrew.
Some friends trusting God for a miracle; Cam's Page and Ray's Page , I know both families would love your prayers.
Love,
Kim
Thursday, March 30, 2006 11:10 PM CST Hi Everyone,
I know that many of you are just itching to know how my first ebay venture went....
Well, I sold 16 of the 18 items! Great huh? Unfortunately, I gave them a great deal on the shipping (didnt realize kids clothes weigh so much!)....so my total profit....$3.25. Probably not worth the effort, the trips to the post office, etc....but kinda fun, and since I have learned a few things, Im hoping to try again and see if I cant increase my gains.
We had a busy day. Andrew woke up twice last night, both times screaming and crying, because his calf was cramping. Each time, we brought him to our room, and Doug massaged his leg. Poor thing was really in so much pain, and it lasted for nearly 20 minutes each time. We gave him some calcium (tums, which are conveniently on dad's nightstand.) This morning I gave him a banana....and he said a prayer, asking God to make his leg behave (it was so cute.)
After I dropped him off to school, I called his doctor, and they wanted him to come in, as it could be a sign of something more serious.
Additionally, on Tuesday night, we noticed a strange bruise around his entire knee cap. We called the doctor, and they wanted us to bring him in Wed....but Wed. morning I looked at it, and decided that since he felt fine otherwise, and his platelet count has been stable, that we would not go.
So, when the cramping happened, on the same leg as the knee....I was concerned that maybe something was wrong.
I picked him up a little early from school and we went in, and saw our beloved Dr. Torno. She comments each time we see her, about the miracle that God has done in Andrew, and how thankful she is for his progress. She checked him out and said that things seem fine, it is probably just his neuropathy (for which he is already on meds.) YEAH!!
They also measured Andrew, as they do each visit, and he has grown almost another 1/2 inch!! This is so wonderful. He is now about 2.5 cm below the growth chart, but getting so close!! Which is good, because he keeps telling us that he wants to play....BASKETBALL!!
After the doctor today, we got home in time to go to T-ball practice, where he was really hitting nicely. Later we went to school to see the elementary students perform a musical entitled, "King of the Jungle"...it was really cute with differnt animal themed performances that told stories of the Bible.
So...we are ending the day on a great note, and for that we are very THANKFUL!!
Speaking of thankful......(time for a little leukemia lesson)....many of you know that Andrew's chemo and radiation is the best chance he has, and if it doesnt work, he would then need a transplant.
Now, speaking generally of kids with leukemia, the odds are not in your favor when you get a transplant....and for those that survive, the damage to the body can be serious and permanent. So, you of course want to avoid that route....but if the chemo doesnt work, it's often your only choice.
For most hospitals, the best they can offer you is a bone marrow transplant, with a cord blood transplant being riskier, with even less favorable odds.
However....the pioneer of cord blood transplants, Dr. Kurtzberg is at Duke (in North Carolina)...and she has done so well, that she offers better hope with a cord blood transplant, than most hospitals do with regular bone marrow transplants (generally speaking, for kids like Andrew.)
So, Doug and I already have decided, that should Andrew need to go the transplant route, we would have to pick the place with the best odds....and go to Duke....and many families that we know have done just that!!
During our discussions, Doug and I wonder, would he need to quit his job? would we sell our house? would he stay here so that we still had insurance, and Andrew and I would go alone?? THANKFULLY THANKFULLY we have never had to answer those questions....
but many families do.....one family in particular, a wonderful young couple, with two little boys....is living that frightening scenario.
Baby Donovan, who was diagnosed with leukemia at 5 weeks old, was not able to win his battle with chemo alone.
His mom and he moved from Indiana to North Carolina, and his dad and brother stayed home....to work and get that coveted insurance!!
Donovan has been having a hard time recovering.....as I mentioned, even when the transplant successfully replaces the cancerous marrow....the damage to the body can be devastating.
His dear family is doing all they can....but they have been there much longer than expected, and funds are running thin.
What are the costs when you have to go for a transplant??
Well, glad you asked :)
Besides the medical cost of the MONTHS in a hospital.....and the expensive medications (did you know that zofran - the anti-nausea med- costs us $7 a day with insurance, and it can be $75 a day without it??) I personally know families that have not been able to give their little kids zofran, because they couldnt afford it, so their child had to suffer through so much more!
Anyhoo....there are also the unseen expenses, like food...
When you live at a hospital, your choices are cafeteria 3x a day, interspersed with fast food. All of which cost....and even when you are released and living in your rented apartment (2nd housing payment!)...you cant bring your child in a supermarket (too germy)...so again, it's drive through almost every meal. It gets so expensive!!
In the midst of all the financial burdens and being far away from home and family.....Donovan's parents are going through the greatest fear....just praying that their baby can win the fight for his life. It really is so sad.
I am grateful, every day, that we are not in their shoes...and if we were, I know we would be desperate for help.
So, I am asking those of you that feel led, to please support Donovan and his family.
Visit Donovan's Page and you will see the cutest, rolliest, polliest, hairiest kid (the meds make you chubby and hairy)....with the most amazing smile.
The best way to support them through this time, is with a prayer....please ask God to heal him!!
You can also leave a message....words of encouragement go along way through times like these.
You can also donate, and it's TAX DEDUCTIBLE (you will thank yourself next year at this time)....
On his website, they have a link, that will take you to a picture that has been covered in tiny squares. It only costs $5 to uncover a square.....a small price to pay when you think of the relief and hope it will bring to his family.
As I close this....thank you for being caring people that check on kids like Andrew....and thanks for getting all the way to the end of this journal entry....and listening to me "beg"...even if for a friend.
Love,
Kim
Tuesday, March 28, 2006 11:41 PM CST Hi Everyone,
Things are humming along nicely here, I was thinking yesterday, that we havent had to stay inpatient since Dec!! That is 2005!! That is a record for us, I think, to go this long.
What made me think about it, is that our friend Gavin is currently inpatient...he has the same t-cell ALL that Andrew has, and they are on the same treatment plan (the longest and most intense). The stinky thing for Gavin and his family, is that his little brother was born on Saturday, and later in the week, Gavin gets stuck in the hospital. His poor mom, is at home with her newborn (Trevor), a toddler (Wyatt) and Gavin and Daddy Zack are in the hospital....really not the way things should be when celebrating a newborn. If you get the chance, please pop in and let them know you are praying for them Gavin's Page
Their plight also brought me back to the days when Andrew seemed to always be in the hospital, and I had my new little one, Christine. I was nursing them both...which isnt easy to do when you are sleeping at the hospital in Orange and your infant is in Ladera Ranch....but we managed, and Christine really brought us such joy during those dark days.
Now...here we are, more than 2 years later...still plugging along....
The kids are excited about their new baby sister...they love to give her hugs and kisses, talk to her through my belly, and offer her special treats (moms secret way of getting goodies, saying they arent for me, but for the 'baby')
Andrew is doing well clinically, although he has been very tired lately. He gets his big chemo today, so hopefully it wont slow him down too much. I finally got his authorization to the opthamologist, so that will be our next area to check off...making sure he doesnt have any side effects with his eyes.
Thanks to those of you that still follow Andrew and pray for him....you can go back to the early days of the guestbook, and see that many of those names no longer sign in...it is a long road, and we appreciate those of you that have stuck by our side.
I also want to thank those of you that pray for our friends. Some of you have mentioned that it is emotionally difficult to read about some of their struggles (yes, it is hard, imagine LIVING it every day!!)....please continue to lift them up in prayer....but for your enjoyment, I thought I would mention one of the more uplifting (and down right hilarious websites)....Kendrie was diagnosed a few months after Andrew, and recently finished her treatment...but her mom still keeps the website, which is always good for a chuckle as she chronicles her life as a mom.....go back in her journal history too....she alway put a humorous spin on things, no matter how difficult they were...Kendrie's Page
Kendrie's mom also gave me the great idea to sell Andrew's clothes on ebay. It has been so exciting to finally see him grow!..and the result is that the 24mos pants he wore at the beginning of the school year are now floods...he grew right through 2Ts and now is in 3Ts...WOO HOO!! So, since we arent having a "John"...no since keeping those boy clothes around. My ebay "name" is kimintheoc , if you are looking for 2t pants and 3T tops, check out my stuff :)
Have a great week,
Love,
Kim
Friday, March 24, 2006 4:00 PM CST Hi Everyone,
Well the news is in, "Baby John" is a GIRL! I was so surprised! We are very happy, it's a win/win situation when finding out the sex of the child.
Being old, I got the fancy, high definition ultrasound, and everything looks healthy. We sat through our "genetic counseling" (what they do for us old folk)...we decline all the tests (like amnio, fhp, and some other fancy chromosomal abnormality tests)....every baby is a blessing, and besides, there are no tests to determine if your child will get hit by a car and become a paraplegic or if they will get cancer at age 2.....Doug and I believe that when you sign up to be a parent, you sign up for the whole package of caring for a real person - and all that life might bring them...knowing that God will bring blessings in all situations.
Andrew and Christine are both so happy that it is a girl. Christine's first reaction, was, "It get's to sleep with me!" (since the new baby will share a room with their sibling of the same sex...which works out, because Christine has the biggest room.)
Yesterday, Andrew told me he wants another baby sister, because, "they are just soooo cute."
Yesterday, my ingenious son also *made* himself a "13 year old big sister"....out of construction paper....with extra long legs that required lots of pieces stappled together....(she had to be taller than him.)
Then, he went and played Tic Tac Toe with his big sister....he scrawled their X's and O's with crayon on the carpet in the playroom!!!
Anyhoo...we are all excited....now to pick a name...which is not as easy to agree upon as "Baby John"
Have a great weekend...
Love,
kim
Thursday, March 23, 2006 3:15 PM CST Hi Everyone,
Tomorrow is the big day, when we find out if "Baby John" is indeed a John....the kids are very excited.
I got the results back from my lab work, and my doctor says everything looks great...he sees no areas of concern, re: my lethargy. So, I guess that means, Im just too old and out of shape!
Speaking of lethargy, I think the kids have gotten wise to my lack of energy and are taking full advantage. The other day, they were both having "days".....
Christine climbed out of her car seat at every chance she could get....refusing to sit in it while I drive.
Andrew was placed in the "red bowl" at school, for pushing his friend AND for pulling his pants down in front of the sixth graders!! Needless to say I was upset to hear of his poor behavior...so when we left his class and went back to the car (where Christine usually waits, since his class is down 2 flights of stairs and Im too tired to carry her up and down stairs....) We get back to the car, and she has changed the radio so that Guns and Roses was blaring, has my mascara all over her eyes and hair, and my powder has been dumped all over the front seat, AND she has locked the doors. She refuses to open the car.....so there I am, with "Welcome to the Jungle" screaming from the car....Christine covered in make-up, laughing because I cant get in, and Andrew next to me, over due for quite a lecture!
Anyhoo...I finally got in the car, and on the way home, convinced myself to deal with the children in a calm and responsible manner....I decided they would be on restriction from TV and have to spend time in their room.
So, with everyone in their room, I went downstairs.....10 minutes later, I go up to let them out, and they are in MY ROOM! Christine has taken off her pull up, urinated on my computer chair (!) and tossed my organized tax forms all over the room(Im trying to get our taxes done).
Andrew wasnt much better.....refusing to follow my instructions to get back in his room.
What is a mother to do?? Especially a mother without the energy to follow through on anything??
I went on strike!
That's right. I told the kids that I was not doing any more favors for kids that dont listen. I refuse to drive them to school, dance class.....buy them special treats or let them make crafts with me in the kitchen.....Im done!
I realize that might sound harsh, but it's actually the more loving of my choices, as I also thought about chaining them to their beds...but 2 things stopped me; I dont have any chains and dont have the energy to go buy them, AND I dont really feel like having a media frenzy on my porch when someone turns me in for chaining up my kids.
In other Sprague Family news.....Tuesday night we laid our dear fish Kovo to rest. Andrew came home from school on Tuesday and with an anguished look said, "Are we gonna flush him down the toilet??" I assured him we would never do that to sweet Kovo. He seemed relieved.
Instead, we took him to the Dana Point Harbor, and put him in near the boats. There is a nice bench near the docks, and I told Andrew he could go and sit there any time, if he wants to "visit" Kovo. Then we had dinner at El Torito, with a window view, overlooking Kovo.....
Andrew seemed pleased with our memorial. He did cry and sob during the final "good-bye"...but is now enjoying his new fish Domino.
Thanks for checking in on us, and please remember some of our friends that are going through difficult times: Cam's Page , Keegan's Page , Victor's Page , Alexia's Page , Donovan's Page , Hunter's Page , Andrew's Page
Love,
Kim
Monday, March 20, 2006 10:38 PM CST Dear Friends,
Thanks for checking in on us, for your prayers and kind words!!
We just returned from our consult with Andrew's psychologist to get the official report on his testing. We are so thankful, not just because he is doing well, but because God continues to show us that He is listening.
The areas expected to be most damaged, are; mathematical skills, spatial relations, and executive functioning. It is no coincidence that those are the 3 areas where he performed the best!! He was in the 97-99 percentile for those areas....what a miracle!!
We are remembering to be like the 1 leper, who came back to thank God...as we ask Him for continued protection. We want to be very clear, that God has done this work and we are very, very grateful!!
I just came upon new research this week, further detailing the way that the methotrexate (one of his chemos) moves forward, killing off brain matter over time. So we still need prayers that God will continue His protection, but I have to say, that todays results are an extra reminder to me that God is providing healing to Andrew.
Andrew had a busy weekend. He was not rained out, so we went to his T-ball game on Saturday. Honestly, I dont think he really understands the concept of the game at all. He did more "shadow dancing" in the field...he even pulled his cap forward and yelled (while glancing down at his shadow), "Look mom, Im a duck!"...uh, yeah.....Im sure once he feels stronger, he will pay more attention to these physical things.
He was thrilled to have his new friend, Sydney, back for a playdate after the game...they played house, and he was the baby....just what he enjoys!!
Andrew had a sad event this weekend, as his friend and pet, our fish, "Kovo", went on to Heaven (might have something to do with the algae filled bowl that "someone" [daddy] forgets to clean)..... Andrew sobbed and cried....hysterically clutching at the fishbowl, "Kovo, Kovo!" It was sad to watch....we sad a prayer, talked about the friends in Heaven that will get to watch Kovo til we get there. Andrew was given the option of burying Kovo out back by our fountain, or taking him to the ocean...he woke up this morning and declared that he would like to take Kovo to the ocean. So, that is what we will do (hopefully we will get around to it before the fish starts to stink!)
Tonight we went and got another fish....Andrew almost picked the name "Vomin" (yuck!) but thankfully changed his mind and the new fish is "domino" Having a new fish seems bittersweet for Andrew...but I know this is a good lesson (and am thanking God we have such an easy animal!!)
On a more serious note....we were very sad to learn that our friend Hunter has relapsed. She just finished chemo recently, and in fact, today they took out her port....a terrific event, which truly symbolizes being done with chemo. Tragically, they also did one more bone marrow aspirate and spinal tap while she was sedated, and found that the cancer is back.
As you can imagine, her family is devastated...the road ahead is uncertain, but one thing for sure, it will be difficult.
I know there are many wonderful prayer warriors that come to our site...please let this family know that you are lifting up their darling little girl. Do check out the pictures on her website...she is precious!!
We were fortunate enough to meet the entire family in Florida, as they had their wish trip at the same time as us....at Give Kids the World. You can visit her site at Hunter's Page
Thanks for stopping by....
Love,
Kim
Saturday, March 18, 2006 0:41 AM CST Hi Everyone,
Andrew and Christine had a great time today. They went to a local St. Baldricks event - for those unfamiliar, St. Baldricks events are held nation wide, each St. Patricks Day...but instead of Patrick, it is BALDrick, because the participants all shave their heads!..now, we didnt shave our heads, we went to support the many partipants who raised money and shaved their heads...with proceeds going to CureSearch which is the organization that raises funds for the Children's Oncology Group...the source of all of our research trials for pediatric cancers.
The event was held at a fire station, so the kids got to ride on the trucks, which they loved. I have some pictures in the photo section. The station we attended was honoring John Taggart...as he was involved each year, and we are very sad that he went to heaven and couldnt be there this year.
The drive to the station took nearly 2 hours, and my tired self kept falling asleep at the wheel, on the way there and back!! I hope my doctor can give me something to boost my energy, cause I feel like I have narcolepsy or something, it is really crazy. Thanks for the notes and emails...It may very well be anemia or some other deficiency, Ill get my test results back next week (or it could just be that I am TOO OLD FOR THIS!!)
Tomorrow looks like it will be the 2nd rained out t-ball game in as many weeks.....not sure what is with our wacky CA weather!
Andrew has been telling me recently, "this doesnt seem real, it seems like a dream." And today he said, "Is this really life? or is this a dream?" I assured him this was it! He said, "Sometimes I think that we are like a game, and God is moving us around like pieces." Now, it is not an odd thought, as I (and am sure most of you) have thought the same thing..but I was surprised at his existential contemplations!! I told him that we kind of are in a game, except we get to move ourselves most of the times...sometimes other people or things move our "man" (just like going down a slide or up a ladder in Chutes and Ladders) and sometimes God steps in to help us, especially if we pray...but we do get to make most of the moves.
I hope you all have a great weekend, if you have great weather, enjoy it...if not, just sleep all day (I think that is what I will be doing, LOL)
Love,
Kim
Thursday, March 16, 2006 0:35 AM CST Hi Everyone,
Thanks for the kind emails and guestbook entries, we are encouraged by your support and prayers.
It's hard for me to believe, that exactly 2 years ago, Andrew was in the midst of his radiation treatments. For those new to his story, this was necessary to increase his chances of survival...although it was the hardest thing we have ever done. He was only 3, and the radiation was to all of his brain, which put him at very high risk for future problems, such as brain tumors and loss of brain function (picture in the photo section.) The radiation also included the backs of his eyes (which is why I am currently working on securing an opthamologist appt, as he is now at risk for cataracts.)
We had so many people praying, and Doug and I are certain that is why Andrew is doing so well today. Thanks to all of you for your prayers, past, present and future...God is hearing us! Andrew is doing well, and we are grateful each day for the blessing that he is.
Today, Andrew enjoys many activities, his latest venture is t-ball (new pic from opening day in the photo section). He also is the world's greatest big brother, spoiling his little sister Christine...who loves her dance class (new pic in photo album.)
Andrew has been feeling pretty good. He did have a lot of headaches and bone pain this week, a common side effect from the steroids...he also has a cough, thanks to the hefty dose of methotrexate he received last week (it causes mucositis, which results in extra coughing and nose picking!)
Christine's arm is fine....no residual soreness, thank God.
I am feeling pretty good, but am so tired! I called my doctor today, to ask if this much fatigue (Sunday, I was too tired to get out of bed to go to church..which isnt completely unusual, but I typically get up....but recently, I have felt almost drugged, unable to get up. Sunday, I finally dragged myself to the coach at 10:30am, and fell back asleep til 6:30pm!) My doctor is having me do some blood tests tomorrow...I have a feeling all will be fine, and he will tell me that my elderly, out-of-shape body is just too darn old for this endeavor.....counting down the weeks til we can see "Baby John" and then just be fatigued from middle of the night feedings!
Thanks for keeping up with us on this long journey....and welcome to our new 6th grade prayer warriors from Stoneybrooke....your cards and letters have been so encouraging to us! I hope you realize that God is using you in the healing of a little boy...and I pray that you are blessed in the process.
Love,
Kim
Monday, March 13, 2006 6:24 PM CST Hi Everyone,
We just got Andrew's MRD results back (this is where they count 100,000 cells, instead of just 100), and none of them were cancerous, yippee!! We are so thankful that his chemo is keeping things under control!!
He has had some leg pain this week, normal from treatment...especially when on steroids. Otherwise, he is feeling good.
Last night, Christine got "nurse maid's elbow" again (2nd time.) The strange thing, is that we were all sitting around, and she and Andrew were picking things up, getting ready to go to bed. She reached down...never touching anything...but moved her arm quickly when Andrew tossed a small dolls pillow at her....and immediately screamed in pain. I knew what had happened, but she never made contact with anything, nothing touched her arm....very odd!
I wasnt feeling that great (tired and nauseus), so Doug took her to the ER. Of course, it took 4 hours of waiting before the snapped her arm back into place, and she is now feeling fine.
Andrew felt bad for his sister, he cried and cried...so worried that she had to go to the ER. Today at school, he was able to pick a small toy from the "treasure box", as he had earned enough stickers for good behavior. Thoughtful brother that he is, he chose a Disney Princess jump rope for Christine...rather than get something for himself. I will say, one of the "blessings" of his treatment,, is that he has grown into an amazingly caring and empathetic young boy.
Today, everyone is back to normal ('cept for my fatigue and nausea!) But I guess that means the baby is growing just fine :)
Thank you for your continued prayers and support!!
And,,,, if you notice the snowmen border, it is because it actually snowed (ok, hailed) at our house this weekend! Where is Spring??
Love,
Kim
Saturday, March 11, 2006 1:14 AM CST Hi Everyone,
Andrew is doing well, feeling great! His back is a bit bruised from the bone marrow aspirate, but it only hurts if he pushes on it, otherwise he doesnt feel any pain. Thanks so much for your prayers!
We had his 2nd half of the neuropsych testing on Thursday. He is on steroids, and was more wiggly and distractable. I have gotten used to seeing him whiz through the exercises with ease, but this time, I could see him struggle and miss a bunch. I was worried, and at the break asked the psychologist if she saw areas of concern...she said "no" that he is still doing great. She mentioned that the tests were starting at a higher level and going up to 12 years old (so of course he is going to struggle and miss a bunch), so that made me feel relieved. Doug and I will go back on the 20th of this month, to get the official results and discuss how he is doing.
The kids went with me to the doctor Thursday morning, and we heard "baby John" on the doplar. The doctor told the kids to listen closely to the heartbeat, and Christine said she heard Baby John say, "I love you guys"....2 more weeks and we will find out if the baby is really John, or if we need to pull out the list of girl names...we will keep you posted.
Andrew had t-ball practice on Thursday, followed by a pizza party. He is so funny....he does his best with the athletics, but is all about the socializing. He has 2 girls on his team....and seems to have an interest in one young girl, Sydney. He has been talking about her quite a bit, and yesterday he was rambling about his planned trip to Disneyland (when he is 16 and takes his siblings by himself....) He said, "Sydney is going to come with me on that trip." I was surprised and said, "Oh, what about your wife??? Remember, Angelica??" He let me know that Angelica wouldnt mind at all, and that she could come on the trip as well. He is so funny! By the way, for those interested, Sydney has red hair ( or, as Andrew calls it, "orange" )...good to see that he is diverse in his interests.
I have a feeling that t-ball will be rained out tomorrow....We are FINALLY getting some winter weather around here, and with a vengeance (relatively speaking)...it is in the 40's at night (low 60's during the day) and we have had some rain and are expecting more!! (no laughing from the rest of the country , please)
Luckily, Andrew's swimming is indoors, so he was able to go tonight. Usually, he swims across the pool, and flips onto his back to take a breath, then flips over to resume swimming. Today, his teacher instructed him to take side breaths, every 3rd stroke. I was so proud, he did an awesome job! He has so much fun, and is really proud of himself for doing well in the pool.
I have been catching up on my scrapbooking. I used to be an avid cropper and Creative Memory Consultant, but once Andrew got sick, I had a hard time going through the pictures. All the healthy photos from Easter and Fathers Day, in the months just before his diagnosis, he looks so great...with thick blonde hair and bright eyes. Come August, he was bald, and either puffy from the steroids or skinny and frail looking....he has really gone through a lot. I finally put those pictures in the book...most of his days were spent in the hospital with a smiley Christine by his side...she has really grown up too. I still am 2 years behind in their books, but at least I got through the *difficult* months...and I look forward to watching him get stronger and stronger in the photos. I am sure grateful that he will have a photo album that not only chronicles his brave battle, but will be a testimony of all God has done for him. My heart breaks for my friends whose photos are now memories...without the hope of future pictures with their kids...please continue to pray for them, especially the families of Elijah, Gregory and John.
Thanks again for all of the support and prayers that you send our way. It is a privilege to be able to share all of our good news with you, thanking God for all that He has done in Andrew's life.
Love,
Kim
Wednesday, March 8, 2006 2:41 PM CST Thanks so much for all of your prayers. Andrew's labs came back, and he continues to do well fighting off the leukemia. The collection of spinal fluid and blood (where they count 100 cells) did not show any cancerous cells, praise God! It will take about 2 weeks before we get the MRD test, which looks at 100,000 cells instead of 100...giving us an even more accurate account.
He was very sore last night from the bone marrow aspirate, but is feeling better today.
Tomorrow he will go for part 2 of his neurological testing, and we are prayerfully hopeful that it will show continued protection of his brain.
Our family has been so fortunate to be covered by thousands of prayers along this journey, and they have really made a difference to us. I know many of you find it a privilege to pray for other families battling childhood cancers....here are a few in need of prayers now, prayers for miracles, for comfort, for God to bring beauty out of ashes;
Kyle's Page , Ray's Page , Victor's Page , Keegan's Page , Cam's Page
Honestly, there are many more, but Caringbridge (the company) has asked us not to list more than 5 (long story)....also, pray for continued comfort for Elijah and Gregory's family.
And....Andrew's cousin, Zachary (age 4) has been having several seizures a day, and the doctors are having a hard time finding the right meds to control them. Please pray for God to bring healing to Zachary, and wisdom for his doctors. Thanks!!
Finally, as we consider praying for all these children, I want to pray for extra blessings for the Governor of South Dakota, Mike Rounds, for taking a stand to protect the children in his state!
Love,
Kim
Monday, March 6, 2006 8:42 PM CST Tuesday evening**** Andrew was very anxious about today's spinal and bma, he had over heard me mention it last week, and has been worried about it. He doesnt like the needles, of course, and he also hates the way the versed and kytamine make him feel. We had a long day at the clinic, and Mary noticed that Andrew was more worked up, and he wiggled around more while she was doing the bone marrow aspirate (the coring needle in his hip.) In the end, he is doing fine (we should get the results of his labs tomorrow, and the more sensitive testing in a couple weeks). His back is very sore right now, not unusual considering what he had done. Hopefully he will feel better tomorrow. Thanks for your prayers and words of support! - kim
Hi Everyone,
Andrew enjoyed a fun weekend, including t-ball and going to the movies. Today they celebrated Dr. Seuss's birthday at school, and made little edible treats that looked like Dr. Seuss (I didnt get a chance to look at how it was made, as he scarfed it down pretty quickly) :)
Tomorrow Andrew goes in for his spinal tap and bone marrow aspirate. The spinal is where they take out his spinal fluid (and check to see if they find any leukemia cells)...they then inject chemo into his spine, which circulates throughout his spine and brain. They will also use a coring needle that goes into the back of his hip, and take out marrow and a piece of bone (they will test this on a more critical level, to look for leukemia as well.)
As you can imagine, this tests are not fun for Andrew. I typically dont tell him until I have to....if he asks while we are there...but I do try to avoid it. Unfortunately, he heard me on the phone last week, and he has been anxious all week, letting his dad and I know that he is upset about having his spinal and bone marrow aspirate. I feel horrible that he has had to worry about this.
They do give him some meds to make him disassociate (versed and kytamine)...but they dont give him any pain killers....
These tests can go very smoothly (especially if the nurse practitioner Mary is doing them)...or, they can be a nightmare with several pokes and prods...please pray it goes well, that Andrew isnt too anxious, and that the results are good.
As for my pregnancy, we *finally* got a date for my fancy ultrasound (there was a big delay with the referral)...I will go on Friday, March 24th....and we will find out if "baby John" is a boy or a girl :)
Thanks for your continued prayers and support,
Love,
Kim
Saturday, March 4, 2006 11:48 PM CST Hi Everyone,
Today Andrew had his first game of t-ball. He is on the Boston Red Sox! He had a great time, hit the ball each time, ran around the bases, danced with his shadow in the outfield....all the fun stuff boys like to do on the t-ball field!
I was sad to miss his game, instead I attended the funeral for our friend Elijah. He was only 3 years old, and he had battled his leukemia for 2 of those years. We pray for his family...his parents especially, as he was there only child.
When you attend the funeral of children, 2 weekends in a row, it is a reminder of how fortunate we are....when Andrew plays t-ball, when he swims (pictures of my little fish in the photo section)...he is giving God glory, for he is a testimony of the healing that God has done.
The priest at Elijah's funeral said, "God did not will for Elijah to have cancer and die, but God did provide him with eternal life, saving him forever."....if we were at a pentecostal church, I would have shouted, "Amen!"...instead I said it, quietly, although out loud....God does not plan for our children to get cancer and die, but He did plan to live with us forever, and since this world is defiled....He has made the way for us to live with Him in heaven. We look forward to seeing Elijah and Gregory again one day, and thank God for His gift of salvation.
If you would like to contribute to the Leukemia and Lymphoma Society.....allowing more moms to spend Saturdays watching their kids play t-ball, instead of touching little caskets, saying good-bye to their babies....please donate to help find the cure....Gene's link is a great opportunity to support this great cause!
Gene's link
Love,
Kim
Thursday, March 2, 2006 9:07 PM CST Hi Everyone,
In the Gospel of Luke, Jesus heals ten lepers...and notes that only one returns to say, "thank you."
We want to be sure, that as God continues the healing process in Andrew, that we give Him thanks.
It was 2 years ago, that we were preparing Andrew for his radiation treatments. We had come to accept, as best a parent can, that he would most likely suffer mild to moderate brain damage. It was what we needed to do to save his life, but it was the hardest thing we have ever done.
Many of you prayed with us, that God would protect Andrew....the radiation rays were targeted at the entire brain...unable to differentiate between cancerous cells and healthy cells. We asked God to kill the bad stuff and save the good...and He did!
Andrew gets his neuropsych testing done each year, as a way to monitor for cognitive issues. Today was part 1 (he has 4 solid hours of testing, done over 2 days.)
The psychologist and I sat in amazement, as Andrew did puzzle after puzzle, answered questions, performed tasks, well beyond his years. He had the attention to sit for the full 2 hours (a feat in itself for a 5 year old)...and while it was clear that he was becoming tired, he barely missed a question!
This is not because Andrew is some super kid....this is because the God that we asked to protect Andrew, has done just that!
We realize that Andrew is still getting damaging treatment (he goes in next Tuesday for more chemo to be injected into his brain via his spinal column)...and the effects are degenerative, as they happen over time...so we are still praying even as we give God thanks.
We want to continue to thank God for the miracles that He is doing in Andrew's life....remembering that His plans for us are good, to help and not harm us.
Thank you for praying with us! We still battle a vicious enemy, but we know that our God is more powerful, and look forward to watching Him have victory through Andrew.
Please keep our friends in your prayers, including Elijah's family, who will say their final earthly "good-bye's" this weekend, as they celebrate his life. He is another reason why prayers and research are still so important....
If you feel led to donate (no amount is too small)....here is a friend that is riding in honor of Andrew for TNT, a picture of Andrew and Gene, from Tahoe in 2004, is in the photo album:
Gene's link
Love,
Kim
Thursday, March 2, 2006 9:07 PM CST Hi Everyone,
In the Gospel of Luke, Jesus heals ten lepers...and notes that only one returns to say, "thank you."
We want to be sure, that as God continues the healing process in Andrew, that we give Him thanks.
It was 2 years ago, that we were preparing Andrew for his radiation treatments. We had come to accept, as best a parent can, that he would most likely suffer mild to moderate brain damage. It was what we needed to do to save his life, but it was the hardest thing we have ever done.
Many of you prayed with us, that God would protect Andrew....the radiation rays were targeted at the entire brain...unable to differentiate between cancerous cells and healthy cells. We asked God to kill the bad stuff and save the good...and He did!
Andrew gets his neuropsych testing done each year, as a way to monitor for cognitive issues. Today was part 1 (he has 4 solid hours of testing, done over 2 days.)
The psychologist and I sat in amazement, as Andrew did puzzle after puzzle, answered questions, performed tasks, well beyond his years. He had the attention to sit for the full 2 hours (a feat in itself for a 5 year old)...and while it was clear that he was becoming tired, he barely missed a question!
This is not because Andrew is some super kid....this is because the God that we asked to protect Andrew, has done just that!
We realize that Andrew is still getting damaging treatment (he goes in next Tuesday for more chemo to be injected into his brain via his spinal column)...and the effects are degenerative, as they happen over time...so we are still praying even as we give God thanks.
We want to continue to thank God for the miracles that He is doing in Andrew's life....remembering that His plans for us are good, to help and not harm us.
Thank you for praying with us! We still battle a vicious enemy, but we know that our God is more powerful, and look forward to watching Him have victory through Andrew.
Please keep our friends in your prayers, including Elijah's family, who will say their final earthly "good-bye's" this weekend, as they celebrate his life. He is another reason why prayers and research are still so important....
If you feel led to donate (no amount is too small)....here is a friend that is riding in honor of Andrew for TNT, the picture is from Tahoe two years ago:
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Gene's link
Love,
Kim
Monday, February 27, 2006 7:24 PM CST Hi Everyone,
Andrew and Christine had a great time at Grandma J's house. They colored some cookies, watched TV all night, had cocoa in the morning with their breakfast...all special treats.
Andrew will be going in for his neuropsych testing this week. This is testing done annually, to help monitor any cognitive changes. Andrew has received pretty harsh treatment to his brain (radiation and lots of chemo injected through his spine, into the fluid around his brain.) Research shows that this is especially damaging to children, especially those under 5. Andrew was only 3 when he received the radiation...and basically, we were told to expect damage....attention issues, inability to learn new things readily, and a need for educational intervention or special ed classes. The damage often doesnt show up for a few years...so we are monitoring him with testing, so that we are able to get early notice of any deterioration.
We are thrilled that thus far, he has not shown any signs of damage. His MRIs show some effects, but outwardly he is performing well.
He is still getting the spinal treatments, and the effects are degenerative (happens years later)...so please continue to pray that his brain will be protected, and please pray that his testing this week shows no areas of concern. -thanks.
We are sad to say, that our friend Elijah has lost his battle with leukemia. He fought hard, and the past few months, he was very ill while they searched for a bone marrow match...but never found one!! Please pray for his parents, as they grieve the loss of their only child.
Additionally, if you live in the area, PLEASE stop by for a QUICK blood test (they just collect a vial from your arm, just like at your doctor.) You can register to be on the National Marrow Registry....and perhaps save a life like Elijah. Details below:
Here is the info:
When: Tuesday, February 28th
Where: Mission Hospital Lobby
27700 Medical Center Road
Mission Viejo, CA 92591
Time: 8am to 9pm
Directions: 5 Fwy south to Crown Valley Parkway
Left on Crown Valley, Right on Medical Center Drive
Cost: Possible $25 processing fee - but maybe not!
In Honor of Gail Stephens, Leukemia patient, TNT participant and
a registered nurse at Mission Hospital
THIS TRULY BENEFITS THOUSANDS OF PEOPLE ON THE LIST, WAITING FOR A MATCH
For more info call: 949-278-1642
Thanks,
Love,
Kim
Saturday, February 25, 2006 9:08 PM CST Hi Everyone,
Andrew is off to Grandma J's for another sleep over. He and Christine live for these, as they are able to do special crafts, cooking projects, stay up late, eat popcorn in bed...they pretty much rule the roost with Grandma.
And, Grandma is in for a *special treat* .....let me back up....
Andrew's FAVORITE show, is called "Martin Mystery"...I dont know any other kid that watches it, but he is obsessed with it. Basically, it is a modern day, Scooby Doo type mystery show, where the good guys go on missions against the bad guys. Anyhoo.....Andrew tries not to miss an episode (he will let you know that it is on at 4pm and 7pm and again at 11pm) Actually, he misses most of them, but then tantrums and says he is gonna stay up til 11 to watch......there are only about 10 episodes that are rotated around, he has seen them all dozens of times.....
Well, a while back, when I was trying to get info on the show (to see if it was appropriate for his obsession), I contacted the company that creates/distributes the show. They are in France. I sent them an email, and the other day, Andrew got a package!! They sent him a few new episodes on DVD (not yet released DVDs, as well as other goodies.) I called the gal to thank her, and let Andrew talk....told him it was "Diana" (who is Martin's side kick on the show.)
He has been over the moon about the phone call and gifts, wondering how Martin "knows" him. I told him, "Of course he knows you, you stare at him on television all the time, he sees you." And Andrew said, "but if he sees me, how come when I knock on the tv and talk to him, he doesnt say anything back?"....me: "he cant disrupt the whole show to stop and talk to you!"
So, he is thrilled....now, how does this relate to Grandma J?? A while back, during a sleepover, there was a Martin Mystery marathon on tv, and Grandma J cleverly told Andrew that she didnt get that channel. So tonight.....Andrew plans on showing the 3 DVDs, over and over and over and over again....they get to have their own Martin Mystery Marathon! Have fun Grandma J!!
Today was also Opening Day for Andrew's Little League. He is on the Red Sox. Doug took the kids to the carnival, and they had a blast. Doug said some kid came up and belted Andrew in the mouth with a toy gun (on purpose he says) and Andrew has a gigantic fat lip. Doug said it bled forever...we will keep an eye on it to make sure it doesnt get infected. Otherwise, they had a blast.
Today was also the day that Gregory's life was celebrated with a memorial service and party. When I pulled up to the church, and saw the white hearst (sp?)...well, it made me sad! That boy loved sports so much, he really should have been at Little League Opening Day! The good news, is that I know he is a super athlete up in Heaven, hitting home run after home run. Please continue to pray for his family, including his little sister....while they have gone through tough times in the past few years, truly the toughest will be those that lie ahead, without the warmth of Gregory's smile to keep them hopeful. A link to his page (and other children needing prayer) is in the last journal entry.
Tomorrow, the kids will come home in the afternoon and go to a birthday party. We continue to thank God that Andrew is doing well, and can participate in these "normal" childhood activities. Thanks for your prayers for continued healing....God is listening!
Love,
Kim
PS. For many kids battling cancer (and adults too) the only option is a bone marrow transplant. We know people, waiting for a transplant...with NO MATCH! It is usually expensive to be tested and placed on the Marrow registry, but there is an upcoming drive being held...for FREE (or almost free, they still havent worked that out.)
It is a SIMPLE BLOOD TEST (you dont donate a whole bag, it just takes a minute!)...also, it is not the painful bone marrow aspirate that Andrew gets..(that is the procedure they would do if you were going to actually donate your marrow, after they find that you match a person in need.)
So, please, take the time to come get on the registry.....I cant imagine a better feeling than saving a life and answering the prayers of a desperate family.
Here is the info:
When: Tuesday, February 28th
Where: Mission Hospital Lobby
27700 Medical Center Road
Mission Viejo, CA 92591
Time: 8am to 9pm
Directions: 5 Fwy south to Crown Valley Parkway
Left on Crown Valley, Right on Medical Center Drive
Cost: Possible $25 processing fee - but maybe not!
In Honor of Gail Stephens, Leukemia patient, TNT participant and
a registered nurse at Mission Hospital
THIS TRULY BENEFITS THOUSANDS OF PEOPLE ON THE LIST, WAITING FOR A MATCH
For more info call: 949-278-1642
Wednesday, February 22, 2006 1:23 AM CST Hi Everyone,
Andrew is doing well. His bone pain has subsided, and I am thinking it was just the steroids from earlier this month.
He had a great play date on Friday, with (drum roll, please) his new wife!
Let me back up.....we met up with his friend from last year, Angelica, and her twin brother Alex. My kids just love them, and they all play so well together.
While I was sitting, chatting with their mom....Andrew came up and announced, "Angelica and I just got married!"
Well.....
Then he said, "She (pointing to some new girl they met at the park) did the 'pronouncement'"....
uh, alrighty then....."Congratulations!"
I mean, really, he couldnt have picked a greater girl! It is funny to me, but Andrew already has a very definite "type"...to the degree, that I can see a girl a block away, and know that Andrew will take an interest in her....
They are always, BLONDE...as blonde as you can get them! That is his number one priority (and for those that dont know me, Im a brunette...so, not sure what THAT means!)
But, what makes Angelica so perfect for Andrew, is that she loves him! She loves his affectionate ways (not every girl is thrilled with his constant pawing and petting). She loves to play house (one of his all time fav things to do)..AND...important, is that she lets him be the baby, AND she carries him around.
I'll tell you, Andrew is not happier than when he is being carried around like a baby by beautiful, blonde, affectionate, Angelica.
As a side note to his marriage, he let me know, many times....that, "I am a husband now, and I can stay up as late as I want at night!" Apparently this new "husband" role has many perks.
He also was very persistant, in letting his dad and I know, that as a husband, he needed to buy his wife a ring.
Now, Doug wasnt thrilled with "encouraging" this whole marriage thing, but I think it is harmless (and rather cute!) And, no son of mine is going to marry a girl and leave her ringless...so we made a family outting to the mall, and picked her out the cheesiest, er, uh, most beautiful ring. It's a flower, with different colors painted on the petals...yeah, PAINTED on.....get the picture? I should probably take a picture and post it for you. I will try to do that..he is going to give it to her next Monday.
So, anyways...big wedding weekend here.
On a more serious note, one of the most courageous fighters we know (and believe me, we know a lot of amazing kids)....has taken his bright smile to heaven.
Gregory's long battle with cancer (and all the side effects and complications that can go with it) is over. The enemy can no longer try to get his hands on that sweet boy, as he is in the arms of Jesus!
Please drop a note to his family, I know it brings them comfort.
There are so many of our friends going through very difficult times now, I feel I need to put their names up and ask you to pray for them, leave them a note...it really does mean a lot to know people are praying for our kids.Victor's Page , Keegan's Page , Donovan's Page , Alexia's Page , Cam's Page
I am adding a new friend, Ray . Ray's story just breaks my heart. This past weekend, his parents had "the talk"...the talk that us cancer parents imagine, in our darkest moments, but pray we never have to have. The talk of preparing our kids to go to heaven...letting them know how wonderful it will be (Andrew thinks there is an Oreo house!), letting them know that Jesus is there and they dont have to be afraid.
Ray's parents had the talk, and he is ready to go....still willing to fight, but with not much out there in medical options....he is prepared to say goodbye to his mom, dad and brother, and live with Jesus. Ray is only 7 years old.....I pray for the day that parents only have to have "talks" about choosing baseball over basketball, or about the importance of eating their vegetables, not preparing their babies to die. Please pray for Ray.
If you would like to do more than pray.....supporting the leuekemia and lymphoma society is a great way to help the Ray's and Gregory's of the future.
No donation is too small.....two great gals we know are fundraising....please visit their websites;Lesa's Page Jeni's Page
Thanks for your continued love and support!
Kim
Sunday, February 19, 2006 1:08 AM CST **UPDATE** Gregory is now with Jesus. He was first diagnosed with Lymphoma, and the treatment really took a toll on his body, leaving him susceptible to so much. Through all his struggles, he always had a huge smile on his face. Our prayers are with his family, we are sad that they dont have their boy to hold anymore. Please leave them a message of prayer in their guestbook. I will look for some pictures of Gregory to post in our photo album. **Sunday, 10:00am....we have just learned that our dear friend Gregory, who has fought so long and hard against lymphoma, is preparing to meet Jesus. He has come so close many times, but he seemed to be doing better recently. I dont understand all that has happened, but his brain stem is swelling (or something like that) and his parents are together with him as he gets ready to go Home. Please pray for them, pray for a miracle, and pray for a cure! You can leave them a prayer or message at Gregory's Page
Dear Friends,
This is the time of year, when I beg and plead with you to sponsor Doug or I in a Team in Training event, to raise money for the Leukemia and Lymphoma Society.
In the past, Andrew was too sick to do much else, but ride in his car seat and follow along as Daddy and the Team trained for a 100 mile bike ride, or cheer on mommy as she prepared for a triathlon. It was such a part of his life for 2 years, heck even Christine still yells “Go Team” every time she sees a cyclist on the road!
Andrew is now in a stronger place. He is able to participate in t-ball and go to birthday parties again. We feel indebted to Team in Training and the life saving work they do, and would love to do another fundraising event.
But we also know that these are the experiences we prayed for, asking God to allow Andrew to grow up, so he could do normal kid things. That prayer has been answered, so we will allow him to enjoy his childhood, and forego the strenuous training….but we haven’t forgotten TNT, as they are a large part of why Andrew is doing so well.
We have also not forgotten, the early days, as some of you might remember. It was only 8 days into Andrew’s treatment, when Dr. Torno took Doug and I aside, and told us that he was not responding to the treatment. He entered the hospital with 94 percent of his blood being cancerous. In the first 3 days, the chemo seemed to be ridding his body of the cancer, but by the 4th day, the cancer was on the move, with a vengeance, and the percentage was rising each day. Dr. Torno told us that Andrew had a poor prognosis, and it was very probable that he would not make it.
I remember looking at him, playing in his hospital crib, tethered to his IV pole, thick blonde hair…and it hit me that we were losing him, we were really going to lose our son to cancer.
Thankfully, through the prayers of hundreds of you, Andrew began to respond to the chemo. His Dr. told us it was a miracle!
9 months later, his body seemed to be shutting down. He spent much of the next 3 months in the hospital, losing weight, no energy, pain and problems throughout his body. We checked for relapse, as well as other life threatening issues….as it seemed he just couldn’t take any more. Thankfully, by the power of God’s healing, Andrew did begin to develop strength and he fought back against the ravages of his chemotherapy.
With Andrew’s t-cell leukemia having a high relapse rate, we are always mindful of how fortunate we are to have him doing so well, yet, fearful of what a resurgence of the leukemia would mean. So many of our friends are facing a relapse right now, and truth be told, the odds are not in their favor.
We live with the fear of a relapse, and are thankful to Team in Training…as the funding they provide is helping to give Andrew a chance. The chemo that Andrew takes EVERY night, was discovered by a TNT financed researcher. This is the backbone of Andrew’s treatment now, keeping the cancer at bay.
We would like to thank all of you, for your healing prayers, and for the financial support that many of you have given….when I send out my pleas for sponsorship.
I am asking again….
We have 2 dear friends that are participating in Team in Training, and I would encourage you to consider sponsoring one of them. For Andrew’s sake, for the sake of so many of our little friends fighting for their lives, and for the future…..that their will be less victims.
Lesa is an amazing gal. She lost her father to leukemia, and has since committed herself to finding a cure. She is the Coach for the Team in Training Cycling team. She is the patient, warm-hearted woman, who pushes novice cyclists and turns them into athletes. She has helped to provide a strong team…..all of whom fundraise. She is responsible for bringing thousands of dollars to the cause….and now, she is training herself, for the Maui Triathlon. If you would like to sponsor Lesa, a link to her website is listed below.
We have another friend, that was able to beat the odds…..in my recent column in our local paper, I wrote about Jeni’s story………here it is:
The Circle of Life
By the age of 33, Ladera resident, Jeni Pickard already had an impressive list of accomplishments. The Bruin had gone on to get an MBA from prestigious Thunderbird, The Garvin School of International Management, and was dating Griffin, the man of her dreams. Running the Vancouver Marathon was next on her list, and Team in Training was the perfect organization to help her meet her goal.
Team in Training is the largest sports training program in the country. They provide coaches and mentors, supporting groups of amateurs as they train for marathons, century rides, and triathlons. TNT is also the fundraising arm of the Leukemia and Lymphoma Society. As individuals train for their race, they raise monies to help fight blood cancers. Each team has an Honored Teammate, someone who is battling/has battled cancer, the inspiration to encourage the athletes in their physical training, as well as their fundraising.
During high school, two of Jeni’s friends had lost siblings to Acute Lymphoblastic Leukemia. This served as further motivation to accomplish her goals, while raising money towards a cure for blood cancers.
Jeni not only ran the Vancouver Marathon, but had such a wonderful experience, that she went on to train with TNT for the Wildflower Half Ironman (1.2 mile swim, 56 mile bike ride, and 13.1 mile run.) This amazing woman was able to realize more than most, but her athletic victories were only the beginning of what she would conquer.
Five years later, Jeni was happily married with two baby girls, Sasha aged 22 months, and Ellie 9 months. She had a lot on her plate, and was enjoying every minute of it, when she was suddenly diagnosed with a high risk leukemia.
Her chances of surviving Acute Myeloid Leukemia were only 10according to her doctors. She would require a risky bone marrow transplant, and the outcome was grim.
Jeni was scared of dying, and was devastated at the thought of leaving her baby girls without a mother. She was able to gather valuable information, thanks to the Leukemia and Lymphoma Society, the very organization she had supported. They helped Jeni find incredible doctors at the City of Hope, and with her brother as her donor, she went on to have a bone marrow transplant.
It’s been 3 years since Jeni stared death down. She still suffers side effects from her treatment, but she has beaten the odds. More importantly, Jeni is a wife to her husband Griffin, and a mother to Sasha (5) and Ellie (4). Each memory with the girls, from big events like birthdays, to mundane things like making cookies, is greatly cherished, as Jeni has not forgotten how close she came to missing out on their lives.
Jeni is grateful for the Leukemia and Lymphoma Society. The research they have sponsored can be directly credited to saving her life. The information and support they provide to patients allowed her to educate herself and find the hope to survive.
Jeni has now joined forces with Team and Training again. She is not only an athlete, but a Mentor and an Honored Teammate. As a Mentor she will support and encourage new athletes as they train and fundraise, and as the Honored Teammate, she will surely provide the inspiration to push forward. When their shins are burning and their lungs are tight, the trainees will think of all Jeni endured, and be encouraged to continue their efforts. Asking for money is hard, but not as difficult as hugging your babies, wondering if it will be your final good-bye. Fundraising becomes easier when you realize the lives that it saves, lives like Jeni’s.
As she prepares for the Anchorage Marathon, Jeni knows it will be different, harder than before. Her body has suffered from the treatment she received, however, she says, “I am running with a reason in my heart, not just a check list of life.”
Certainly, her new aspiration will not only celebrate Jeni’s life, but the many that will be saved by the efforts of the Leukemia and Lymphoma Society. The irony of Jeni supporting the very organization that saved her, has not been lost. As often happens, things form a circle in life.
PLEASE, no donation is too small. Whether you give up your latte’s for a week, or forego that “date night” this month, or give yourself a nice tax deduction for next year…..consider sponsoring one of these gals….and let them know Andrew sent you.
Love,
Kim
If you would like to support Lesa’s fundraising for the Maui triathlon, please go to her website @ Lisa's webpage
If you would like to support Jeni’s fundraising for the Anchorage marathon, please go to her website @ Jeni's webpage
Friday, February 17, 2006 1:19 PM CST Hi Everyone,
Thanks so much for the wonderful messages and emails, sharing with us your love and support. So many are praying for Andrew to continue to stay strong as he fights his cancer, a battle that we cant fight alone. We are GRATEFUL for those that are in this with us, and pray that God blesses you in return.
Andrew was a trooper about missing his school & activities. He did cry for a few minutes yesterday, when re realized he was missing Zero the Hero's birthday party....but we took a field trip to Target instead, buying lots of craft supplies...which brought a smile to his face. He also had a special Burger King lunch....his request, how could I say no?
Andrew had t-ball practice yesterday, and seems to be enjoying himself. I am so proud of how much effort he puts into it. When the team is running their laps, I can see that Andrew is getting tired, but he still hangs in there. At batting, he is just not strong enough to hold the bat and control it through a swing, so we are going to have him use the whiffle bat...he has more control and is proud of how well he can hit the ball. Yesterday he said, "Did you see all my home runs?"...of course I did :)
Today, well....we have received so many loving offers to brighten Andrew's day. Thanks to the Whaley's, who are the most amazing family! They are like angels that have always made my kids feel loved and cared for, they have shown Doug and I tremendous support too......this family is such a blessing! Thanks to Monika at Party Land in Ladera Ranch. She always has a special balloon for the kids, and goes above and beyond to show how much she cares for them. We felt bad not to be able to take everyone up...I guess it is a good thing, that we were able to have so many fun opportunities for Andrew.
Andrew instead, spent the first part of the day, with his dad. They kept the spirit of "Dad's Day" alive, and went out to breakfast together. They sat at the counter at Paul's Pantry....a perfect "guy" breakfast. Andrew then went to work with daddy for the morning, where he worked on his own project - a special card for his future wife, Angelica!
We had previously made plans to spend the afternoon with Angelica and her twin brother Alex. The kids are looking forward to their playdate....I know Andrew cant wait to get a big bear hug from his girl!
The kids both have swimming lessons later this afternoon...this is turning out to be their favorite activity, they just love swimming.
Thanks for your love and encouragement....we appreciate all of you!!!
Please dont forget to pray for our friends, and please let them know that you have joined them in their battle....many are listed in yesterday's journal entry (go to journal history for the links.)
Love,
Kim
Wednesday, February 15, 2006 4:28 PM CST Hi Everyone,
I hope you all had a loving Valentine's Day. We went out as a family and had a great time, finished off with watching American Idol, which the kids love.
Andrew is doing pretty well. He is having a lot of bone pain lately, which *could* be from the steroids. If it lasts much longer we will talk to the doctors. He already takes medication for his bone pain, which has worked well for many months, so I am concerned if the pain is now breaking through. Hopefully it will go away, with the steroids leaving his system, Ill keep you posted.
Recently, (actually all throughout this journey, but it seems a lot more recently) people are surprised to hear that Andrew is still taking chemotherapy.
Because the cancer is in his bones and blood stream, he has a very long course of treatment, in order to ensure that there are no more cancerous cells in circulation. He takes 4 chemos on the following schedule:
Andrew starts each 28 day cycle with high doses of steroids, which help to push all the cells out of his bone marrow (where the blood products are made.)
Each Tuesday, he is given Methotrexate. Once a quarter, the methotrexate is injected into his spine, into the cerebral spinal fluid. This allows it to go up and around the brain (where leukemia cells like to hide)...most chemos do not cross the blood/brain barrier, so the spinal chemos are an important part of his treatment.
Every night he takes Mercaptopurine or 6mp. We give this at home, orally.
Once a month he gets an injection of Vincristine. This is the drug that is causing his Peripheral Neuropathy.(severe pain in his extremities)
As you know, we have known many children that have relapsed. We are currently praying for friends Amy (who is preparing for a transplant at choc.), Keegan , Donovan , Victor , Alexia , Cam and many more.
Because Andrew's t-cell leukemia is aggressive, we are always praying that God protects him from a relapse, as the outcome would not be in his favor.
Thank you for praying for Andrew and the other children fighting for their lives. They some how have a way of looking happy and normal, despite the difficult struggle that they face. It is interesting to note, that kids get much more chemo, at higher doses, and for a longer period of time than adults....yet they keep smiling.
love,
Kim
PS. Im sad and hurt to say, that Andrew has a lot of fun activities going on at school this week, that he will have to miss. He was looking forward to the 100th day of school, and made necklaces out of 100 Cheerios (they look like zeros), for all of his friends. There is a Jana Alayra concert tomorrow too. Additionally, Friday is Dad's Day, with a pancake breakfast and time with dad's back in the classroom. Unfortunately, a little girl in his class, who has "walking pneumonia" will be at school...and Andrew cant risk getting sick. Our doctors are adamant that a viral pneumonia, with a cough, could be contagious - especially so shortly after her diagnosis, and they have advised that I keep Andrew home. Besides the risk of pneumonia (which could be life threatening), we would end up in the hospital....off chemo....and it would take several weeks before his chemotherapy was back up to 100 Obviously it's not worth the risk to send him to school. It just stinks, as he has missed out on so much....which is understandable when he is sick, but hard to explain to him, when he isnt the one with the pneumonia. I will try to make it up to him with some special activities this week....Ill keep you posted.
love,
Kim
Sunday, February 12, 2006 8:04 PM CST Hi Everyone,
Andrew enjoyed a great weekend.
Friday he started swimming lessons again. It was great to see that he and Christine were able to pick up where they left off. They are both so comfortable in the water. Andrew can swim a good length of the pool, then flip himself over to breathe, then flip back over and swim some more. Christine is learning to use her little limbs to get some distance too. They both really like to dive down and get rings, such little fish! I am hoping that the swimming will help improve Andrew's strength, particularly in his upper body.
He had t-ball practice on Saturday, and seems to enjoy it. The skills are harder for him, but he tries his best, which makes me proud.
Saturday evening he went to a birthday party for two of his best friends, and we stayed late and the boys enjoyed the bounce house well into the night- Christine too, of course.
Today, we went and saw Curious George - which I found to be a bit drawn out, but the kids loved it.
So, a really good weekend, which we are so thankful to enjoy.
Andrew has been ruminating (another side effect of the steroids, is to obsess on things) about his new duties as a big brother, "now Ill have two to take care of!" he has reminded me!
Here is a conversation we have had 110 times this weekend:
Andrew: When Im 16, Christine will be 14 and Baby John will be 11 (by the way, we all refer to the baby has "Baby John" although we dont know the sex yet. I have warned the kids that there is a chance 'baby john' will be a girl, and we will have to change his name.)....
Me: that's right
Andrew: and I'll be old enough to drive us all to Disneyland.
Me: yes you will.
Andrew: So, Ill take the kids to Disneyland, and we can stay about 5 nights at the hotel, and we can go on all the rides, because we will all be old enough for Splash Mountain and Tower of Terror, right? even Baby John?
Me: That's right, he will be old enough when he is 11.
Andrew: So, we will go on the rides, for 5 days. And we will eat dinner at Goofy's Kitchen, because they have the best choices and the best desserts. And, what time do you think I should have the kids go to bed, 9 or 10?
Me: I think they can go to bed at 10 during that vacation.
Andrew: Ok, Ill have them go to bed at 10, and if they are good on the trip, on the 5th day, I will buy them a present at the Disneyland store.
He really is spending a lot of time on this scenario, to the extent, that he has pulled out his bank, and gathered loose change from around the house, "for when I take the kids to Disneyland when I am 16 and can drive."
It is hilarious, each time there are more details and special things he has thought about. He has Christine all worked up about going, too bad they have to wait another 11 years!
He really feels responsible for his siblings....tonight at dinner:
Andrew: Christine, do you like Jesus?
Christine: Yes, I like Jesus.
Andrew: well, then ask Him into your heart.
(pause)
Andrew: Christine, if you dont ask Him into your heart, you will go to hell and your feet will burn!
Doug and I about spit out our food. We reminded Andrew that the reason we ask Jesus into our heart, is because we love Him so much, and know that He will give us strength and guidance.
Andrew: Well, it's a real place, not just make believe, and if you go there, your feet will burn off!!
So glad we have the big brother, to keep everyone in line!
Thanks for your prayers and encouragement. Andrew is going in for his 4th and final round of dental work on Monday. We are hopeful that it will go well....so lucky to have found a great dentist to care for Andrew.
Love,
Kim
Friday, February 10, 2006 11:08 AM CST Hi Everyone,
Well, it is steroid week, and there is no chance that we have forgotten. Usually, we see the steroids effect 5-7 days after Andrew starts them, however this month, we were reminded from the get-go!
Now, the effects are numerous, and include; insomnia, night sweats, nightmares, bone pain, hunger, food obsessions, aggitation, SEVERE mood swings (from clinginess to anger to elation and sadness).....usually he has each of these to some degree....but the one most parents dread, is the moods....
Here is how our dinner went Wed night (day 2 of steroids)....
Andrew: hey mom, can I help you make dinner
Mom: sure honey, we are having pork chops and applesauce (peter brady flashback!), salad and green beans.
Andrew: can we make some corn bread too mom? (said in the most loving of voices)
Mom: sure babe, help me make it.
We then proceed to have one of those story book times,, of making bread together, mixed with Andrew giving me lots of hugs and kisses.
20 minutes later, at the dinner table (bread is still baking, since it was not on the original menu)
Andrew: (screaming as if demons were flying out of his mouth) Where is my bread you dumbasses?!
Mom, Dad: (dazed, uh oh steroids are here)
Andrew: I WANT MY BREAD! YOU DUMBASSES!!! (he then proceeds to go around the table, hitting everyone, calling us all dumbasses -nice!, and shrieking as if his soul was being ripped from his body)
I should mention, that the screaming, shrieking is the tell-tale giveaway that it is the steroids, the emotions are off the chart.
Doug and I sat there, torn between beating him and ignoring him, threatening to put soap in his mouth, and encouraging him to go to time out....but the doctors were right...there is no point in trying to deal with the 'roid rage....just let it play it's course (and protect yourself!)....which is what we did, pretending to enjoy our dinner "great pork chops honey!" "thanks dear"......while the hurricane roared around the table.
This lasted for a while, basically until the bread was served.....at which point Andrew became beaver cleaver again, with lots of "i love you's" and smiley faces, as he mowed through his corn bread. (after the tantrum that the entire loaf was his alone!)
Yesterday (day 3), he came home from school, and in his typically "arts and crafts officianado" mood, decided he wanted to make a spelling book and math book. GREAT IDEA!
He brought out all his supplies, with a cheerful smile, so excited....and proceeded to make his books.
2 minutes into it, he became overtaken by hysteria and anger,
Andrew: "This is EVIL, EVIL, EVIL, EVIL,............. (all said while lying on the ground, kicking his legs, crying uncontrollably)....
It seems, that he made a stray mark on the front page of his "math book"....which threw him into a 20 minute rage; sobbing and screaming....EVIL, EVIL, EVIL!
I couldnt agree more! The emotional havoc brought on by the steroids is like a mirror into his body, into his mind, a picture of the destructive forces of his cancer.
Im hoping that this early appearance of the mood swings, means they will end early this month too.....
Otherwise, all is fine hear....we heard the baby's heartbeat, and Christine is pretty sure he said, "Hi Christine" to her through the doplar machine.
Have a great weekend.
Love,
Kim
Tuesday, February 7, 2006 7:47 PM CST Hi Everyone,
Andrew is starting another round of treatment.....which means, this is steroid week! We went to the clinic for chemo, and he was the typical trooper.
It was wonderful to see some OLD friends. We saw Cetlalli (sp?) who spent a lot of time in the hospital with Andrew. He thought she was the cutest little baby, and just loved her, always wanting to give her toys and pictures. They both had tubes in their noses and were bald together, but you should see her now! She isnt a baby, she is 4, and taller than Andrew with beautiful shoulder length hair! They were happy to see each other, and had some good hugs. Andrew also played video games with his friend John - it was great to see John holding strong, as he fights to keep his brain tumor under control, hoping a cure can be found.
The rest of the family is doing well, Im still nauseaus, but keeping food down. We will go to the doctor on Thursday and hear the babies heartbeat.
Thanks for all your prayers and encouraging messages!
Love,
Kim
Sunday, February 5, 2006 9:35 PM CST Hi Everyone,
We had a great weekend.
On Saturday morning we brought some refreshments to the TNT Cyclists. Andrew was the honored hero for the cyclists for several seasons, and it is always encouraging for us to see people out raising money. The cyclists that knew Andrew were happy to see him, looking healthy, with hair, etc.
Saturday afternoon, Andrew had t-ball practice. He had fun, but he really is much weaker than the other kids, and it was hard to watch. His lower body strength has really improved...he can climb stairs leg over leg, which he could not do a year ago. I have been so impressed with how much he has improved, that I hadnt given much notice to upper body strength (not many opportunities to notice it.) At t-ball, he could barely hold a bat, and he throws underhanded rather than overhand. During the summer, he swam and did gymnastics, but I pulled him out when school started. I think I will get him into at least one of them again, so that he can work on his upper body. He not only has osteopenia (bone loss) but his treatment has stripped his muscle mass, also causes weakness in extremities (his neuropathy, for which he takes meds). I know this will all catch up when he finishes chemo, but I just feel bad for him to be behind the other kids.
Last night, Andrew had a couple friends over for a sleep over, which is a favorite treat! They stayed up all night,well according to Andrew anyways...he only "napped a few times" He really had fun with his friends.
Monday Andrew will go in for round 3 of his dental work (upper left quadrant this time). On Tuesday he will go back in for chemo. I felt bad on Friday, when he went for his endocrine labs, cause the nurse put in the port needle, drew labs, and then we realized that she drew the oncology labs, and not those for endocrine tests. Andrew had to have the needle put back in again....(it is a really big needle)...he was upset, but got a cool bath toy for the double torture. Afterwards I said, "arent you glad you got poked twice, cause you got a better toy?" he thought about it and shrugged, as if it was almost worth it!
Thanks for your prayers, words of encouragement and support. We are thankful to have friends that lift us up on this journey.
Love,
Kim
Friday, February 3, 2006 10:41 AM CST Hi Everyone,
Andrew had a good visit with the endocrinologist yesterday. He was pleased to see that Andrew has grown since the last visit. He is still below the growth chart, but seems to be catching up. We are hopeful that once he stops treatment completely he will grow even more.
We looked at the bone density scans, and Andrew is about the 15th percentile.....not great, but not the worst of the worst. We will not give him any meds for this, as they have their own side effects. We will do another round of bone density scans in about 9 months and see how they compare. Andrew is at a risk for breaking bones, which is the reason he avoids certain activities, like riding a razor scooter.....but the good news, is that his bones should rebuild themselves once he completes treatment.
In the past, Andrew had some issues with his thyroid and hypoglycemia (both caused by his treatment). The doctor wanted to see another set of labs...these are different than the labs that the oncologist gets, as they are looking for specific hormones put out by the endocrine system. For some of the tests, it is necessary to have the blood work done in the morning, before eating. So, we are going back to the clinic this morning (Andrew is currently tantruming because, "by the time we eat breakfast, it will be lunch time!") He misses so much school for appointments....Im lucky he is young, and not missing serious academic material.
We are planning a fun weekend...it will start early in the morning, as we will provide some refreshments for Team and Training riders...they are training for an upcoming 100 mile bike ride, raising money for the Leukemia and Lymphoma Society. Andrew will have t-ball in the afternoon, and he is very excited.
Thanks for keeping Andrew in your prayers. Also, please continue to pray for our friends that are fighting for their lives: www.caringbridge.org/southamerica/alexia, www.caringbridge.org/ct/camdalene, and www.caringbridge.org/co/keegan. When your child is in such a desperate state, really only God can make the difference, so please let them know you are praying.
Love,
Kim
Wednesday, February 1, 2006 10:52 AM CST Hi Everyone,
Well, Christine is well on her way into the life of a 3 year old. She enjoyed having dinner with the princesses at Disneyland yesterday, and for the first time, Andrew was not much interested in them....usually, he enjoys seeing them as much as she does. I guess he is growing up too.
I will say that our trip to Disneyland got off to a bumpy start, as I arrived without any money and no ATM card (my lifeline). Doug had the card, and he would be meeting us for dinner at 5pm (we arrived at noon). We have annual passes, so I didnt think much of it, until I realized that I wouldnt be able to rent a stroller ($8). Andrew cant walk too much without his legs hurting and getting tired, so we need a stroller for him.
What's a mom to do? Well, this mom became a panhandler for about 20 minutes. Yep, I walked up to unsuspecting tourists, with a kid on each hand and a baby in my tummy, and asked if I could borrow money for a stroller. Every single person just looked at my blankly, as if they couldnt believe I was begging....so I would go on and mention that Andrew has cancer and cant walk too far without a stroller, and I forgot my money...although my husband would be coming later and I could meet them and pay them back....[more blank stares]...I really didnt intend to ramble the whole story, but when people just look at you without a response, you feel like you need to plead your case. Most said, "I dont have any money"...I felt like saying, "yeah right! as if you really were as stupid as me to come to Disneyland with no money!"..but I just said thanks and walked away. Finally, a lady gave it to me. She didnt want to, she didnt say a word, she just had that stare, and handed it to me. I offered to give her my cell number and meet up later to pay her back, and she just shook her head and walked away.
Yeah, anyways, so we made it in and got a stroller, and that is what matters.
As for Andrew...he did well at the dentist this past week. The worst part was when he took a nasty bite into his cheek afterwards (that's what a numb cheek will do.) Otherwise, he did great, fell asleep again, as he got the upper right quadrant filled.
Tomorrow he is going to see the endocrinologist. We are fortunate that our cancer clinic works with a series of specialists to help follow the kids and the side effects of their treatment.
Although Andrew's growth was halted during the first 2 years of treatment, we are happy to report that he has grown this year! He still is a good inch below the growth chart, but we are hopeful that he will catch up. The endocrinologist should give us more info in this area. Andrew will have his blood work done, which will be able to determine if he is making the hormones and growth factor that is needed. (this can be damaged from radiation, as well as the chemo.)
Additionally, I hope the endocrinologist will be able to read Andrew's dexascan. The dexascan is a high definition test that is able to measure bone density. We know from x-rays that Andrew has lost more than 50% of his bone mass (osteopenia), but we would like to be able to understand how much was lost, and if there was permanent damage (necrosis). He had the dexascan 5 months ago, and nobody has been able to read it for us, basically because the norms are set for the elderly population, and nobody really knows what the normal measurements are for kids. I was told the endocrinologist will know how to read the scans, let's hope that is true.
Thanks for your continued prayers for us as well as our friends; Keegan who has just relapsed www.caringbridge.org/co/keegan , Alexia who is awaiting an upcoming cord blood transplant www.caringbridge.org/southamerica/alexia and Cam who is awaiting another transplant www.caringbridge.org/ct/camdalene
Love,
Kim
Monday, January 30, 2006 11:04 AM CST Hi Everyone,
Andrew had a good weekend, primarily spent celebrating his sister's birthday. Christine will be 3 this week, and Andrew is very excited for her.
She had a party with her friends, and Belle (the Princess from Disneyland) showed up....Christine was awestruck! We will be going to Disneyland on Tuesday (Christine's actual birthday) to eat dinner with the Princesses....although Andrew just wants to get on the Tower of Terror again.
Today Andrew will go in for part 2 of his dental work. He did so well last time that I dont anticipate any problems on his part. Please pray that it goes well and that he is protected from bacteria getting into his blood stream (for which we will take extra antibiotics today.)
I will have new pictures up soon of Christine's birthday.
Thanks for your prayers, please continue to pray for our friends that are having a tough time, including Cam who has relapsed and is awaiting experimental treatment and Alexia who has travelled to the US to have a bone marrow transplant, after relapsing....I know both families will appreciate your prayers. www.caringbridge.org/ct/camdalene and www.caringbridge.org/southamerica/alexia.
Love,
Kim
Sunday, January 22, 2006 10:57 PM CST ** Quick update....Andrew did FANTASTIC at the dentist! He even fell asleep in the middle of it all...
He loves his new silver tooth and is really proud of it. Maybe I should have a gemstone encrusted on it...NOT!
Thanks for all of your prayers, we know that the prayers of so many are what keeps Andrew doing so well. Also, a HUGE thanks to Dr. Lee at Ladera Ranch Pediatric Dentistry...he is really well versed in treatment of kids with special medical needs, and goes the extra mile to make sure that the dentist is a fun experience for the kids.
Hi Everyone,
We had a great day. We were given tickets to the San Diego Wild Animal Park (THANKS ROXY!), and went there for the day. The weather was beautiful, not too hot, not too cool, very clear with a slight breeze...just great for walking around.
For those out of the area, the SD Wild Animal Park is actually the reserve area for the SD Zoo. The animals are out in the "wild" rather than being in small areas.
We took the tram ride that goes throughout the park, and saw all kinds of animals; rhinos, zebras, lions, (the tigers were not out today...I learned that the majority of the animals are in the back, out of our view, in a large reserve area.) We also saw, giraffes, all kinds of deer and cattle, a few monkeys, elephants....mostly animals native to Asia and Africa.
The kids were able to feed the giraffe (this is a very controlled deal...you pay $2 for ONE leaf, and one person at a time can walk up to the giraffe, quickly feed him the leaf, and then you need to walk to a different area)...the kids liked it, although Doug and I figure that is how they are funding the entire park (they must have racked in a $100 in the 15 minutes we were there!) Anyhoo.....I have some pictures up of the kids feeding the giraffe, also one of them at the elephant show.
Tomorrow, Andrew begins his massive dental project. He will have the bottom left quarter of his mouth worked on (he has to have his work done in 4 visits, a different quadrant each time!) He will have at least one root canal tomorrow. I have never had a root canal (and probably would have to be dragged in to have one)....so Im nervous for him. Lucky for me he is such a brave kid! Please pray that they are able to salvage his teeth with as little work (and pain) necessary, and that he handles it well. Due to his central line (port) and lowered immune system, there is a risk of infection, so he will take extra antibiotics tomorrow before and after he gets the work done...please also pray this protects him from any bacteria entering his bloodstream.
Have a great week, and thanks for continuing to lift Andrew up in prayer.
Love,
Kim
Friday, January 20, 2006 9:38 PM CST Hi Everyone,
We are all cruising along here...had a hectic week, but glad it is the weekend.
Doug was on a business trip all week, and besides just missing him around the house, helping with the kids, etc. he wasnt here to give me my dreaded 2x day shots in the tummy. Since I cant do it myself, and I wont let Andrew (as much as he would like to give them)...I ended up going to the doctor every morning, and the urgent care each night.
I dont take Andrew to places like an "urgent care" as it is full of sick folks, and too risky for him. So, each night, I tried to find a way to get my shot....the worst night, was on Tuesday....Andrew developed severe headaches and non-stop vomitting...most likely from coming off his steroids (we wean him off, in an effort to avoid these side effects, but it didnt work this time.) So, imagine, he is sick and throwing up, but the Urgent Care was going to close, and I needed to get there or Id be out of luck.....so, I take him in the car...with a bag to throw up in.....and leave both kids locked in the car, in the parking lot, while I get my shot....I was running back and forth to check on them, while I waited for my name to be called, halfway expecting someone to call the cops on me for leaving them in the car.....finally got my shot....Andrew felt better within a couple of hours. I was worried that if he had to go in the hospital...we would be in a bind...with Doug at the other end of the country!
Anyhoo.....doing better now.
I had an ultrasound this week, and was able to see the baby, moving around, little heart beating. I brought a picture home for the kids, and they are so excited. I have been feeling nauseous, despite using presciption and non-prescription meds...and it has made me rethink the parameters I have set down for Andrew's meals.
Before Andrew had cancer, he was the worlds healthiest eater....but the chemo (and steroids) changed all of that. As his weight dropped, and he battled anorexia, we tried to get him to eat anything (even unhealthy stuff, anything to add a pound).....once he was doing better, and started maintenance, I tried to tighten the reigns on his eating, and curb the sugar and junk food.
He has done pretty well, but he still prefers mostly bland foods, especially at dinner, where he would like to just eat toast and white rice 99% of the time.
Thus far, I have told him that I will not make him anything special (including rice and toast)...he is welcome to eat whatever the family is eating....he doesnt have to eat it, but I wont make him anything different.
Well....now that I feel like throwing up all the time....I feel so guilty! I know that Andrew lives with a low level of nauseau all the time, he probably doesnt even realize it, as it is his new "normal"....I cant stand the thought of being sick for a few more months, and here he has had to put up with it for a few years!!
So, from now on, I will make him toast, rice, whatever he wants (that is not junk food)....as I have a new found empathy for how it must be to live your life on chemo...or at least with a sick tummy and loss of appetite.
And, speaking of Andrew....he goes to his first "t-ball event" tomorrow....a clinic to learn some skills. He is very excited, and we are all happy for him, thankful for each new thing that he gets to experience and enjoy.
Thanks for checking on Andrew and keeping him in your prayers. Please continue to pray for his friends that need extra prayers, including Cam, who is facing another relapse with limited options; www.caringbridge.org/ct/camdalene and baby Alexia, who relapsed and is now preparing for a transplant; www.caringbridge.org/southamerica/alexia
Hugs to all of you,
Kim
Tuesday, January 10, 2006 11:40 PM CST Thanks for all of your prayers for our family's health... Christine is feeling much better on antibiotics for her ear infection, and I hope her cough will improve soon too.
I am feeling sick as a dog, and keep telling myself that this wont last forever (although with Andrew and Christine the nausea was severe all 9 months! AHHH!)
Doug, well, the doctor that looked at his "corn" (small tumor in his head) a couple of weeks ago, was pretty sure it was benign and had stopped growing, but was going to get some other opinions...we will keep you posted.
Andrew....resilient, brave, amazing Andrew. He went in for his IV chemo today (vincristine), and also began his steroids. Tonight he also takes methotrexate (every Tues.) and his mercaptopurine (taken every night). I think he looks a little pale, and the doctor noticed a lot of bruises on his leg....we will get the lab results back tomorrow. Andrew is always just hovering on the verge of needing a blood transfusion (that is normal for kids on chemo), although it has been a long time since he has actually needed one.
While at the clinic, we saw our dear friend Alonso. Alonso is a teen aged boy (I think he is 16 or 17 now), diagnosed within a day of Andrew. He has osteosarcoma, a bone cancer that first attacked his leg, but has since spread to his lungs. We spent a great deal of time with Alonso and his family in the hospital during the "early days"....and we are so sad that his cancer has returned to his lungs. His family is hoping to go to MD Andrerson ( a hospital in TX that is one of the best at treating osteosarcoma)...and we pray they get there and that the specialists there will be used by God to bring Alonso to complete remission! Please pray for Alonso and his family during this difficult time.
We also ask that you continue to pray for Elijah. He is younger than Andrew, and his leukemia has returned. He needs a transplant, but sadly, there is no match. Try to imagine, for just a moment, having a child that desperately needs a transplant, and not having a match (do you have the emotion captured??)....his parents have been living with that feeling for almost 3 months now!!
If you are not on the Bone Marrow Registry, please call and sign up. It is a simple blood test to register (if they find that you match someone, you will have a procedure done...where marrow is extracted...I cant say it isnt painful, but Andrew has had his marrow extracted several times, without anesthesia, so...if these kids can do it, I know you will too.) The number to call is 1-800-MARROW2 Thank you for keeping Elijah and his family in prayer, they are hopeful that a miracle will be given to Elijah.
Soon, Andrew will begin t-ball. He really gave soccer a good effort, but only lasted a few minutes on the field before he needed a rest. We are hoping that t-ball will be less taxing on him, yet still give him the opportunity to play team sports, which he loves.
Also.....some of you may remember, that I have been trying for more than a year to get an expert to look at the MRI's of Andrew's brain. (someone trained in radiation oncology, who is familiar with the effects of chemo on the brain.) I have found a doctor that is willing to look at Andrew's MRI's. Please pray that he is able to wisely and accurately read the images, and that he will find a healthy, brain with no signs of damage. Ill keep you posted on this.
Thanks for checking in on us, we appreciate your love and support, and your encouraging words in the guestbook.
Love,
Kim
Saturday, January 7, 2006 6:13 PM CST ***MINOR NEWS FLASH****
Doug took the kids out for McDonalds so that I could stay home and barf in peace....and when they returned, Christine was sobbing hysterically, with an ear ache. Doug is taking her to the ER (that is all that is open now)...she has been battling this bug since the week before Christmas (and thankfully she got the worst of it, and not Andrew). It was sort of odd/funny...watching her crying, and then Andrew crying....he wanted to go with her to the ER and hold her hand.....both of them crying....Andrew saying, "I wish my ear hurt instead so she wouldnt feel bad"...I was so proud at what a sensitive boy he is, but I couldnt help think, 'it's just an ear infection, you have gone through so much more!'...as well as, 'Im glad Andrew got the cancer and not Christine, cause if this is the reaction to an ear infection, I wouldnt want to see her getting a port poke or spinal tap!!!' In all honesty, I realize ear infections hurt quite a bit, and I pray that she gets some antibiotics and is on the road to recovery soon. Thanks for your prayers!
Hi Everyone,
Greetings from the CA coast, where the weather is in the high 70's, with blue skies forever.....
After the pouring rain we had last week, I just want to indulge myself in the beauty of S. CA......
Andrew's cough seems to be getting better, and he was able to go to school on Friday. Christine still sounds icky, and we are just praying that they both just get stronger. In Winter time, especially, I am so nervous about Andrew getting a bug....I dont like his chemo being halted, and I selfishly dont like having to put our world on hold to go into the hospital. Additionally, now that I am getting my 2x day shots (administered by Doug)...if Andrew and I were to go to the hospital, how would I get my shots?? It is too far for Doug to drive up 2x a day....and I just cant do it myself....the nurses arent allowed to give shots to ME....Im sure I would figure something out, but it is just another dimension to NOT wanting to get stuck in the hospital.
(this is a great time to shout out to Nicholas and his family, and Sam and his family....both in the hospital now.....get better soon friends!!)
I am feeling very nauseaus and starting to wonder if I will be able to make it for 30 more weeks!!?? With both Andrew and Christine I was extremely sick for the entire pregnancy. Not to mention, that I wish I were 22 and a size 4....and I could do pilates and wear crop tops with a little basketball popping out...oh I wish I could fast forward the clock, and the baby could be in our arms (I doubt I will get to do much holding, Andrew and Christine are already fussing about who will get to hold the baby, feed the baby, and sleep with the baby-they are so cute!!)
Thanks for all of your prayers for good health for us all!!
Please continue to pray for our friend Elijah. He relapsed for the 2nd time this past Fall (he has already had 1 transplant)....there is no match for a 2nd transplant, and in the time that he has had to wait, the cancer is returning with a vengeance ** Special Bulletin**..please, register to be a donor on the bone marrow registry....the agony of your child needing a transplant and not being able to find a match is heartbreaking.....1-800-marrow2 We are all asking God for a miracle for Elijah, as well as continue strength and comfort for his family.
Andrew is scheduled for his IV chemo on Tuesday...he will also start his steroids for the month.....Ill let you know how it goes.
Love,
Kim
Thursday, January 5, 2006 0:17 AM CST Hi Everyone,
We hope your New Year is off to a great start.
Andrew has been feeling good, except for a very nasty cough. He has had it sense before Christmas, and just when I think it is going away, it surges, sounding very croupy.
Last night, the cough was so horrible, and I had feared that he had pneumonia, as happens easily with him. We went to the clinic, and to make matters worse, he started to get a fever while we were there!! His temp was 100.2, and our docs admit us if it is 100.4...we made a narrow escape, and thank God, it hasnt gone back up.
We are praying that it clears up soon...these viruses hit Andrew hard and it takes him longer than most people to recover. He is looking forward to getting back to Jr. K with his friends, so please pray he clears up asap.
Last night we watched the rather pathetic Penn State game. Doug grew up as a Nittany Lion (both of his parents are Penn State Alum)....and tonight, the exciting USC game. Despite Christine's (and mommy's) screams and "fight on!'s", The Trojans lost it in the end....but it was a great game. The end of the college football season makes the New Year official....and our next festivities will be Christine's big 3 at the end of the month.
As we start 2006, please keep our friend Elijah in your prayers. He is going in for his 2nd transplant, and really needs a miracle.
Love,
Kim
Saturday, December 31, 2005 12:57 AM CST Wow.....It's almost 2006, I laugh when I think back to the Y2K hysteria....and, here we are, 6 years later, still moving through time.
New Years Eve is probably a reminiscent time for most people, and seeing as our cancer world has me in a near-constant state of reflecting, well, you might guess that this post is going to be full of how thankful we are that Andrew has come so far, how afraid we are that things will change, how grateful we are for the blessings that we have found on this path, and how horrible it is that Andrew has ever had to suffer.
I was watching TV the other day, and Andrew was standing right in front of the screen, goofing around, until an ad came on that caught his attention.....
"Im ready to fight my cancer" a middle aged man assured us....Andrew turned to look, and was then fixated on the screen, as more adults convinced us of their will to win their battle with statements such as "Im ready to start chemotherapy".
As I watched Andrew watch the commercial, It was surreal to think that he is part of their world. He knows what they are talking about.
5 year olds should be saying things like, "Im ready to start Kindergarten" and "Im ready to ride my bike"....it breaks my heart that he has been immersed into the world of cancer and all that goes with it. Yet, he has become so mature, so strong, so brave.
(Minor medical side note....that ad was for neulasta, a drug that will increase the production of white blood cells.....you see, the chemo kills off the blood cells and this leaves the patient feeling tired and lowers their immunities - amongst other things- so, if these folks take neulasta, they will have more energy and stay healthy....HOWEVER, if you have leukemia, which is "cancer of the white blood cells"...you dont want their production to be boosted...so, we dont take neulasta....in case anyone was wondering)
The other day, Andrew and I were talking about Bible Stories, and how one of his friends was afraid re: a particular story. Andrew asked why he was afraid...so here is our converation about some of Andrew's favorite stories:
Mom: remember David and Goliath
Andrew: Yeah, in school we shot marshmallows at Goliath (a 6 foot drawing of Goliath that they put on the wall) and they stuck to the wall (laughing) (btw, this was such a cute activity that his teacher did with the kids)
Mom: Well, some people might have thought that it was scary for small David to have to fight a big giant.
Andrew: But God gave him strength (said puzzled, as if with God's strength, why would someone be afraid)
Mom: And remember Daniel in the Lions Den? That would be pretty scary to be put in that den, dont you think?
Andrew: (nonchalantly) yeah, but Daniel believed in God, and he was protected.
I wish I could have that same faith, confidently trusting that God would protect us in our battles. I wish I could have the same bravery, to not fear in the face of adversity, knowing that nothing can keep us from God.
I remember when Andrew was first diagnosed with cancer. We (and that includes so many of you out there in cyber-land) prayed that Andrew would be healed, and also protected from side effects, strengthened through the trials....and that God would use this trial to develop Andrew into a young man beyond our capacity as parents...that he would learn lessons that Doug and I were not fit to teach him.
We still pray for all those things, but with every day, it becomes so clear to me that God has done so much for Andrew, and that he has created a boy that is strong and brave, and ready to live the life God has for him, with a tenacity and maturity that is beyond his years.
We pray that 2006 brings continued answers to our prayers, and that all of you are blessed to become all that God has for you.
Love,
The Spragues
PS. We have some of our favorite pictures from the year up.
Monday, December 26, 2005 4:11 PM CST Merry Christmas!
The kids had a wonderful day yesterday, and were so excited at all that Santa brought them. I should mention, that they were particularly happy, because they came very close to getting coal, due to lots of misbehaving on Christmas Eve......but the Old Fella was forgiving, and the kids were grateful.
Christine was inundated with Disney Princess stuff, including a giant palace for her barbie princesses, dress up stuff, and princess big girl panties ....she has a pack of 7 panties, and wore each of them at some point during the day! Luckily she didnt have any accidents, she just liked changing them.
Andrew got a lot of fun stuff, including two things he asked for: a cash register and cartridges for his leapster. He also got a Spider Man cartridge for his leap book, a cool new "space" fishbowl for Kovo (our beta fish), and a dinosaur egg that he can break into.
Doug and I have done a lot of NOTHING, and it feels great.
My nausea is starting to develop, and I am just praying that it doesnt get too out of hand. Otherwise, I feel great.
Doug had an appt. with his general practitioner on Friday re: his "corn". (I dont want to alarm people by saying 'brain tumor')...the good news, is the doctor thinks it looks like it has calcified and is no longer growing. Doug is going to see a neurologist, so that he can get an expert opinion, but we are hopeful that there are no reasons for concern.
Tonight we will be attending our community Menorah Lighting. Jesus attended the "Festival of Lights" which is a wonderful celebration of God doing miracles for His people. We are thankful for the miracle of Jesus, and all the blessings that God has given us throughout the year.
I am putting up the kids offical "Christmas picture".....it was sent out on our Christmas cards (which I finally dropped in the mail on Christmas Eve).
Love,
Kim
Thursday, December 22, 2005 0:25 AM CST EVENING UPDATE--- My ultrasound appt. was great! We could see the baby and the heartbeat! I brought home the ultrasound picture and the kids are very excited. Thanks for your prayers.
Hi Everyone,
Things are starting to look like Christmas, and I may even get the gifts wrapped and cards sent out before New Years!
Tonight, our church had a special service, with lots of Christmas music. Andrew sang in the children's choir. He is the tiniest one...probably a good foot smaller than the next smallest kid....but boy, he is so cute, so animated.
I know all parents just think their child is special, but I just couldnt help but be so thankful, so amazed, so in awe of him, as he sang tonight. I could hear people around me comment on the "cute little kid in the tie", and I could only think of how much he has gone through, how tough things still are for him, and yet...he just looks like an ordinary kid.
I thought back to darker days, and thanked God for this moment of watching Andrew perform with the other kids. I dont know if special occasions, and heck, even every day events, will ever seem normal again....because for me, I look at them as a special gift that I some days wondered if I would see, and I still wonder how many more I will get. Will that ever change? Will a birthday party or an acheivement ever just be a casual occurance anymore?
We had a great night, Andrew had fun.
Tomorrow, I go for my ultrasound, and will hopefully hear the baby's heartbeat and get assurances that things are going well. So far, my labs are looking good. My stomach, on the other hand, while never a prized treasure to begin with, is covered in huge bruises (doctor said this is normal from my shots and not to worry). Doug is giving me my shots, and Andrew sits by gleefully watching the needle go into my belly (his excitement level is really through the roof!!..how sick is that??)
Doug has an appointment on Friday to consult re: the tumor in his brain, or as Andrew calls it, "the corn in your head". I will keep you posted and appreciate your prayers.
May the last few days before Christmas be joyful....
love,
Kim
Please pray for a dear boy, Cameron, who is starting a new experimental treatment....his leukemia has relapsed again and he doesnt have a lot of options left. We know that God is the only option needed, and I am sure his parents would appreciate the support and assurances that many are praying for him. www.caringbridge.org/ct/camdalene
Monday, December 19, 2005 0:49 AM CST Hi Everyone,
We had a great weekend, with family visiting from Texas. The kids had a wonderful time with Uncle John, Aunt Kris and their cousins Trea and Aaron. We enjoyed shopping, a fun time at Boomers (family fun center), an "all night slumber party", and a special lunch to celebrate Trea's 12th birthday at the Rain Forest Cafe.
Andrew is feeling pretty good, on the end of his steroid pulse (ie. a bit emotional) but overall doing well.
Christine decided this afternoon, that she wants to wear big girl panties and use the potty! She has been successful the past few hours...we shall see how it goes. She is becoming so grown up, and will do most anything to be like her brother.
Doug is still sore from his accident, but is hanging tough. While he was at the ER, they did a CAT Scan of his head. The doctor said their was a "benign meningioma", and gave us the cat scan picture of his head with a dime sized circle near the front, telling us it was nothing to worry about. When we got home, we googled 'meningioma', and to our surprise found that it is a "brain tumor"! We are sure it is probably nothing, but Doug will have this checked further, as we know that even a non-cancerous tumor can cause problems. We appreciate your prayers as we move forward, asking that it truly be nothing to worry about.
Im trying to stay brave with my twice daily shots. Im too chicken to inject myself, so Doug does them, and Andrew excitedly watches! (this is the kid that wants to grow up to give bone marrow aspirates, so Im sure this is all fueling that passion!) I will have an ultrasound this Thursday, and would love prayers that this newest baby is growing well.
We finally decorated our tree, and are getting all things ready for a quiet Christmas at home. We really hope that all of you have a great week, dont get to frazzled in the stress of it all, but remember the many blessings of this past year!
Love,
Kim
PS. the crazy lady link is still on the page, for those that want a good laugh!
Friday, December 16, 2005 0:43 AM CST Hi Everyone,
Let me just say, that if I believed in astrology, I would bet that the moons of health and safety were descending with the stars of medicine and embarassement rising along side them, however, I dont believe in that stuff, so I'll just say we have spent FAR TOO MUCH time in the hospital these past 2 days!
To start things off, on Wednesday, (**warning, private and personal info to follow...although the only one that would mind isnt old enough to read this journal, yet!**) Andrew was crying and writhing in pain, that his "pee pee" hurt. Sometimes he has painful urination, not from syphillis, but from the chemo....I try to give him enough acknowledgment to comfort him without coddling....he has too many aches and pains to pay attention too, honestly, so I try to teach him to brush it off, with a hug. However, this pain lasted longer than he should have to endure, he was crying and screaming.....so I looked, and he had a tiny little red, sore, on the tip, but inside the opening of his penis. Well.....we have a fancy, prescription "butt cream" for sores, but I wasnt sure if "external use only" meant it couldnt go on the tip/inside of his penis.....so, I called the clinic.
Well.....guess what, they wanted to see it. Um, is it selfish to try to argue that the 6 days in the hospital last week had seriously set back my Christmas preparations, and I finally had a chunk of time to get some done....so I really couldnt afford to spend 2 hours driving (and probably 2 more in the clinic), for something that I really didnt think was life threatening...but rather, I just wanted to know if I could put the cream on the opening of his penis. It was a "yes" or "no" thing, definitely not a come-on-in-and-lets-examine-it thing. Well....it didnt matter, I would drive to the ends of the earth and give up all holiday festivities for Andrew....so we piled in the car and went to the clinic. The doctor looked at it, said we could use the cream, and we were off.....(after our wait, and after a urine test).
Thankfully, Andrew seems to be feeling better down there.....and so I thought we might get some of the Christmas stuff done today. WRONG!
I had an appt of my own this morning, as we are expecting the baby that Andrew and Christine have been incessantly praying about and begging for! My last 2 pregnancies ended in miscarriage, so we are a little nervous about this one, and my doctors have some special precautions for me. So, the simple appt I had this morning turned into an all day extravaganza of blood tests, exams, an extra doctors appointment with my primary doctor to learn how to give myself (gasp) SHOTS IN THE STOMACH TWICE A DAY! *if you know me, you know I scream in pain at the mere sight of a needle* We went to pharmacies to try to get special "compounds", meds, and syringes, etc......it was exciting, and a little scary, but also tiring. So, as we ended the day of appts and instruction.....in the afternoon.....the kids and I drove homeward, and Doug went back to work......
*ring ring* goes the cell phone.....It's Doug, letting me know that he had just been in a car accident. All I knew was that he had hit his head, said it was "bad" and there were lots of cars.
I knew he wasnt too far ahead of me, so I drove towards his work, praying that everything was ok, until I came upon the accident. Thankfully, nobody had any serious injuries. In fact, of the five cars involved, Doug's was the only one that was not drivable (that was the moon of the bad luck in the house of trauma).....he has a pretty good bump on his head, and is very sore, particulary his head, back and neck.
Ok, so the kids and I wait at the scene, and when all is done, and Doug's car is towed, we pile in and go to the Emergency Room to check out his head. THANKS TO MARK AND HEATHER FOR WATCHING THE KIDS, I dont know if they could have handled one more hospital/doctors room!
We got home around 9pm.....we are tired, sore, we both have lots of meds to take and owies to care for (yes, the spot where I got my first tummy shot is sore!)....we are a pathetic pair.
The good news is, we are all hanging in there...still no lights or ornaments on the tree (although all the boxes are pulled out and sprawled all over the living room).
To top all this off, we are all very excited to have special company for the weekend! The kids are excited to see Uncle John, Aunt Kris, and cousins Trea and Aaron, as they are coming from Texas to stay for a few days.....I just hope nobody notices that I havent had time to straighten up or get the house ready for them!!!
Thanks for checking on us and for your continued prayers.....for Andrew's health, and also for Doug to recover quickly, and for our new little Sprague to grow and develop so that he can meet the world's greatest big brother and sister.
Love,
Kim
PS. if you havent yet heard it, click on the "crazy lady" link near the top of the page....soooo funny!
Tuesday, December 13, 2005 6:59 PM CST Hi Everyone,
First, we interrupt the great music to bring you the most hilarious(pathetic)
thing I have ever heard. I am embarassed to say that this person lives nearby (according to her mention of where she is and where she resides)....(please click on the above link that says "crazy lady")
Also, some of you have asked what chemo Andrew is currently on....
Today he got Methotrexate via spinal tap. He also got an infusion of vincristine. He will take high dose prednisone for the next week, and continue his mercaptopurine every night.
Also, please pray for our new little friend Nicholas. He has a website; Nicholas's Page
We are home, and Andrew's spinal went well...thanks for the prayers.
This morning he asked me if we were having a "procedure" and I told him we were. For the rest of the morning, he had moments where he would hold his neck and say, "it feels weird when I breathe"....I think it was either anxiety making it hard to breathe, or imagining the meds he gets (which make his throat taste funny).....in any case, we kept talking about it, and how it would be ok, that mommy would be there, and he would be fine, etc.
He did pretty good preparing for the procedure, some yelling and anxiety initially, but he calmed down. I did hear some loud screams during the procedure (I wait outside the room)...but it was much better than the fiasco that happened the last time (where he was so worked up screaming and fighting the whole time.)
Other good news, is that we switched his nausea meds, and so he didnt throw up today (he usually throws up a lot afterwards.)
He was way excited, because Santa was at the clinic and he got a transformer. Then, after the procedure, he got another transformer. It was a very big day in the transformer dept!!
We got home just in time to watch, "Martin Mystery" a cartoon show that Andrew is obsessed about. He is resting in front of the tv taking in Martin's adventures.
We are all looking forward to the weekend, as my sister Kris, and her family are coming for a visit. Andrew and Christine cant wait to see their cousins.
Thanks for your prayers!
Love,
Kim
Oh, by the way, went to the dentist (new dentist that I really like)...Christine made me so proud...she sat like a big girl and let them clean her teeth like a princess. Andrew, again, super brave guy....did great....however...needs about $2000 worth of work....has so many cavities and even needs a root canal (I have never had a root canal and Im 40..and it's not cause I have wonderful teeth...got loads of fillings....)anyhoo...they will need to do the work over 4 visits!! CAn you believe it?? The chemo erodes the enamel, also the chemo and radiation inhibit saliva (which makes your teeth cavity prone)....and he couldnt brush the first year and a half of treatment, and cant floss now....I feel so bad for him, one more thing he has to endure! Please pray that his teeth get taken care of in the best possible way. Thanks.
Saturday, December 10, 2005 11:03 PM CST Hi Everyone,
We have had a busy weekend, and everyone is feeling good!
Happy Birthday to Daddy! Doug turned 38 (Andrew loves telling everyone how OLD his dad is)...and was treated to a showing of Narnia. The movie was beautiful, and it was neat to see Andrew understanding some of the themes. Christine enjoyed it too...I thought they might be afraid during the violent parts, but they seemed to be ok (I guess I should wait and see if they try to stab each other with swords during their next play room squabble.)
The kids went and saw Santa...I didnt expect to take them, and they werent "dressed" for it...but we saw him, Christine was so excited, and so I decided it was worth a try. She usually is "nervous" when it comes to characters....Santa included...so I figured we would do a run through (totally expecting her to freak out). But they both loved cuddling with the Jolly Fellow...and let him know what they want for Christmas. (see new photos)
Tonight we enjoyed a living nativity in our community....both Andrew and Christine know that it is Baby Jesus's birthday, and they loved seeing him at the nativity. Afterwards, we did our 'neighborhood drive and look at the lights'...it seems each year there is a "new" yard ornament of sorts...this year, the "giant snow globe" seems to be the hit. So, we have had fun counting them as we drive...tonight we saw 11 of them!
Andrew joined the kids choir at church, and tomorrow they will sing at a retirement home. On Monday, he has his class Christmas party. The season is busy, busy and fun, fun!!
On Tuesday, Andrew will go in for a spinal of chemo, also a bone marrow aspirate (where they draw out some of the bone)...these have been increasingly painful for Andrew, and we are praying that he is less anxious on Tuesday, and that the whole thing goes smoothly. We are also praying that the results are clear of any cancer.
Thanks for your prayers, both for Andrew and his friends.
Love,
Kim
PS. Can anyone hear the song? At the hospital, I could hear songs on friends' pages, but not on ours....can you hear it?
Wednesday, December 7, 2005 12:17 AM CST Hi Everyone,
We are back in the swing of things, getting back to tasks that were put on hold....decorating the tree, working on Christmas Cards, opening mail, etc.
I did get the disc back from the photo recovery lab....and it has HUNDREDS of pics, all of them out of sequence....but as I reviewed them, I felt as if I were going on a journey through time (out of order, of course)...pictures from Doug's TNT bike rides and my triathlon, family celebrations, fun times...with Andrew at different stages of treatment, and Christine, always smiling, either as a baby, toddler, or more recently, a big girl. It is emotional to go back and see how far we have come, to realize what troopers my kids are, they just keep smiling away through it all.
There are some great pics from our Wish Trip...however, there is a tiny, teensy problem....while I can look at the pics, I can not save them, reduce their size (they are way too big for the website)...so I am waiting to hear back from the lab re: how to access the pics, and I hope to have them up real soon.
Whenever we go to the hospital, I try to ask God, "Why this time? Why are we here? What do you have for us?"...I know darn well that he isnt sending me there for just some RnR (imagine, being cramped in a closet for a week.....sleeping with your preschooler on a twin hospital bed....IV's beeping through the night.....) Anyhoo....it never fails, God is always faithful to show us that He is doing good in spite of this trial.
When we were in the clinic on Wed, waiting to go up to the hospital, I saw a little girl....she was bald....but I thought she looked like Amy. But she couuldnt be Amy, because Amy's hair has been growing back...this girl was bald. Bald kids look alike, so I wrote it off. Then, I saw Amy's mom. She broke the news that Amy had relapsed (the heavy chemo to prepare for a transplant caused her newly grown hair to fall out again.) I immediately knew, that God has sent us to pray for Amy.
Lots of people ask us why Andrew doesnt have a transplant. A Bone Marrow Transplant is extremely damaging to the body, as they must first wipe out your body's marrow, and cause it to stop producing blood products....and then hope that the donor's marrow takes over. All of the body's organs are at risk of permanent damage, or shutting down all together. The chances of it being successful are not in the patients favor, and even when it does work, there are serious, life time effects. So....we do the chemo treatment first, praying that it works, and if it doesnt, they try a bone marrow tranpslant.
Amy is preparing for the transplant, and really needs prayers. They are already having some issues with her lungs...please pray that God protects her body, and that the donor's marrow successfully takes over for her.
Also, while in the hospital, we met a new family. They have a 3 year old son named Nicholas. They were just given the news that Nicholas has an aggressive cancer (stage 4 neuroblastoma) (this is what our friend John Taggart had).
It was really heart breaking to see his family, in that place where we once were, trying to come to terms with a diagnosis of cancer.
This will be a difficult Christmas for them, as they gather test results, to try and find out where the cancer is, and begin treatment to fight it. As I spoke to Nicholas's mom, it reminded me of Christmas 2 years ago, when we were so fearful, wanting to make it very special, as we wondered if it would be our last with Andrew. We are so thankful that we have gone on to enjoy many holidays, and are looking at our 3rd Christmas since his diagnosis.
This world holds no promises, none of us knows if this will be our last Christmas. When you are in the midst of cancer treatment, that truth is ever real, always on your mind, but it is true for all of us....so enjoy this holiday season, taking nothing for granted.
Please pray for Nicholas and Amy.....Our God is loving, kind, and holy....it is not in His nature to cause harm or illness....cancer is not from God, not in His plan. But He promises to use our situations, to bring good, and is able to heal...please ask Him to have mercy on these children and their families, and surround them with love and protection.
Also, if you check back in the journal history, there is a list of many other friends that need your prayers....
I will try to get the Wish Trip pics up soon!!
Love,
Kim
Monday, December 5, 2005 11:57 PM CST Hey, dont have time to update, but want you to know we are home...home, sweet home.....
will write more later, and do have some pics back from our wish trip that were recovered (thank you God!)
Love,
Kim
Monday, December 5, 2005 3:49 PM CST Hi Everyone,
We are still here in the hospital, but plan to be getting out soon. Andrew has not had a fever since Saturday night, and his blisters have all dried up. He is feeling good, his usual self....currently enjoying some "medical play" on a fancy doll, giving the doll lots of pokes in the back (practicing to become a doctor who gives bone marrow aspirates)....actually, since the last spinals have been very traumatic for Andrew, and he is due for another one next week...we thought it might be good for him to do some play therapy with the doll.
Thanks for checking on us....and for all of your prayers.
Love,
Kim
Tuesday, November 29, 2005 7:59 PM CST Sunday Eve: We are still in the hospital, although Andrew is feeling better and his spiked temps are less frequent. The infectious disease doctor said he had the "garden variety virus of hand foot and mouth...not a big deal, and perhaps 'walking viral meningitis.'" With Andrew's lowered, and much battered immune system, minor viruses can hit hard (as we are seeing) and keep him off his chemo for days....which is why we try to be so careful that he doesnt get sick. We are pretty bored, isolated in a room the size of my closet, watching everything that Nick Jr. (nickelodeon) has to offer....in a nutshell....bored out of our minds. We are praying that his fevers stay away, and if so, think we should go home tomorrow....praying! Thanks for checking on us and for your supportive messages...it is nice to know that just because we havent seen the sun in nearly a week...that our friends have not forgotten us. Love, Kim
Saturday Afternoon: We are still at the hospital, as Andrew continues to spike high fevers. His pain seems to have moved, and he no longer cries about his head and neck, but his shoulder and leg. We think this is just the virus and fevers making him feel miserable. HIs hand, foot and mouth blisters are looking much better...so Im hoping we will see the end to all of this soon. The doctor is having the infectious disease specialist look at him, to make sure we arent missing anything. In the meantime....we are enjoying watching the Trojans smear the bruins. Please continue to pray for Andrew to heal from this virus, and to be protected as his chemo is put on hold while he is sick. Thanks, Love, Kim
FRIDAY AFTERNOON....WELL, AFTER TALKING TO THE DOCTOR, SHE THINKS THIS IS ALL PART OF THE VIRUS (WHICH MAY ALSO BE VIRAL MENINGITIS, ALTHOUGH NOT BACTERIAL) SHE SAID IT JUST MAY TAKE THE BETTER PART OF A WEEK FOR HIM TO GET PAST THIS. WE ARE CHANGING THE FENTANYL (PAIN MED) TO A CONSTANT PUMP (RATHER THAN GIVING IT EVERY 2 HOURS) IN HOPES THAT IT WILL KEEP THE PAIN AT A MINIMUM. HE IS STILL HAVING HIGH FEVERS, AND WE ARE WORKING ON CONTROLLING THAT TOO, AND ADDING ANOTHER ANTIBIOTIC, JUST IN CASE SOMETHING BACTERIAL IS BREWING (BACTERIAL INFECTIONS CAN QUICKLY BECOME LIFE THREATENING FOR ANDREW...WHERE AS A VIRAL INFECTION JUST CAUSES HIS COUNTS TO DROP..BUT ISNT A REAL THREAT). THANKS FOR THE PRAYERS AND SUPPORT...LOVE, KIM
Friday morning...the good news, is that the spinal result are clear for meningitis. The curious news, is that he is still having severe head/neck pain, requiring almost round the clock IV pain meds (fentanyl). Andrew also continues to have high fevers, in spite of being on tylenol. I will ask the doctor today, if this can all be caused by the "hand, foot and mouth" virus, or if it could be something else. Thanks for your prayers, and a special (((HUG))) to the Whaleys for sending goodies up to Andrew...he loves them, and he really loves all of you!! Love, Kim
THURSDAY NIGHT UPDATE.....THEY DID THE SPINAL TODAY, AND THESE SEEM TO BE GETTING MORE DIFFICULT FOR ANDREW, NOW THAT HE IS OLD ENOUGH TO KNOW WHAT IS GOING ON (AND SMART ENOUGH TO KNOW THAT WHEN WE BRING HIM INTO THE LITTLE ROOM WITH A JUNGLE MURAL ON THE WALL...HE IS GONNA GET A 'PROCEDURE'). HE FOUGHT IT EVERY STEP OF THE WAY, AS THE DOCTOR PUT IT, 'IT WAS A BLOODY ENTRY WITH ALL HIS MOVING AROUND'...AND I COULD HEAR HIS SCREAMS HALF WAY DOWN THE HOSPITAL CORRIDOR. IT IS OVER....AND WE GET THE RESULTS TOMORROW SOMETIME. HE SEEMS TO BE FEELING BETTER MOST OF THE TIME, STILL HAS A PAINFUL MOUTH, HEAD AND NECK. HE HAD A HIGH FEVER LATE THIS AFTERNOON, BUT IT SEEMS TO BE GOING DOWN. THANK YOU FOR THE KIND MESSAGES IN THE GUESTBOOK...WE APPRECIATE THE SUPPORT OF OUR FRIENDS! LOVE, KIM
Thursday update....noon....there is some concern that Andrew may have viral meningitis (he has some symptoms, and I am having trouble discerning if he really could have it or it is just my paranoia....). They will probably do a spinal tap today to see if he has it (Andrew has had dozens of spinals, so while they are never pleasant..but rather painful, they are somewhat old hat at this point.) In any case, he still feels miserable, is on some IV pain meds, but I dont think they are working...his mouth, head, neck and overall body hurt.
Please keep him in your prayers and pray that he doesnt have meningitis, but rather is just feeling ill from the hand,foot and mouth virus.
Thanks...Kim
WEDNESDAY NIGHT UPDATE....ANDREW WOKE UP WITH A FEVER AND FEELS PRETTY MISERABLE. WE ARE NOW IN THE HOSPITAL. HE HAS HAND, FOOT AND MOUTH DISEASE, A PRETTY COMMON CHILDHOOD ILLNESS THAT DOESNT MEAN MUCH TO MOST KIDS, BUT FOR ANDREW WE ALWAYS HAVE TO BE CAREFUL. IM NOT SURE WHAT TIME FRAME WE ARE LOOKING AT, BUT HOPEFULLY WILL KNOW MORE TOMORROW. THANKS FOR YOUR PRAYERS, PLEASE ASK GOD TO MAKE HIM FEEL BETTER AND TO TAKE AWAY THE PAINFUL SORES IN HIS MOUTH. ~Love,Kim
Hi Everyone,
Well, we went to see the oncologist about Andrew's mouth sores, and when we got into the exam room....Andrew was covered in a pesty rash, all over!! He did not look like that when we left the house a few hours earlier....
The doctor said they are not chickenpox, but rather a "rash of unknown origin." We suspect his mouth sores are from whatever virus is giving him the rash.
There is nothing anyone can do about a virus, but wait it out. We have a prescription for a new mouth rinse (the other one didnt seem to help)...and it should be ready for pick up soon. Im praying this one helps, as it is painful to have these sores, and they are so big that Andrew talks funny.
One good thing about going to the hospital, we get to run into old friends. Please pray for our friend John...he had leukemia when he was 2, and now as a teen ager has a brain tumor (for which their is currently no cure). He is always so sweet to Andrew, today he helped Andrew learn how to play a game boy. John doesnt have a website, but if you pray, God will hear you :) He is always so sweet to Andrew, today he helped Andrew learn how to play a game boy. Here is a picture of Andrew and John last year, during the Hyundai Hope on Wheels tour...they are in the bottom right picture John and Andrew
Our friend Gregory is still in the hospital, please pray for his continued healing. Gregory's Page
Also, our friend Elijah has relapsed for the second time, and they are not being given much hope. He doesnt have a website, but please pray for Elijah!
Some other wonderful kids that are having a tough time right now (and there are just WAY too many)...Baby Donovan's Page, Victor's Page, Keegan's Page, Alexia's Page, Bradley's Page, Hunter's Page, Cam's Page, libby's Page Please stop by and leave them a message of encouragement, they really need your prayers.
We appreciate your support!
Love,
Kim
Sunday, November 27, 2005 10:42 PM CST MINI UPDATE, MONDAY NIGHT
Andrew has very bad mouth sores (big, open sores that are very swollen.) It is painful to eat and talk...
These can be from one of his chemos (methotrexate), it can be from a virus (he doesnt have the immune system to fight off lots of stuff)...it can also signal that perhaps his counts have crashed (which would either mean he is fighting something or he cant handle all of his chemo).
So, his doctor has him loaded up on Tylenol with codeine for the night (thankfully he doesnt have a fever)..and we are going in tomorrow morning to takes his labs, culture his sores, and try to get him back up to speed.
We appreciate your prayers for healing...and also for my little guy as he is in a lot of pain.
Thanks~love, Kim
Hi Everyone,
I hope you had a wonderful Thanksgiving, and are looking forward to the upcoming holiday season.
We dragged out all the Christmas stuff, and so my house looks like the decorations aisle at KMART after shoppers have rummaged through it....wreaths and garland, lights and ornaments, and countless Christmas knick knacks strewn about....hopefully we can get everything in it's place this week.
As we were putting up the fake-o-rama tree, which the box says is 6' but I think it is only 5.5'....well, Doug said, "Can we get a real tree next year?" (We cant have the live tree due to possible fungal spores or something like that, which can cause Andrew to get a fungal infection)...so, I went back and calculated what our Dr. said is most likely Andrew's off-treatment date, and it is November 24, 2006!! So, that means, only 1 year of chemo left to go, and YES! We can have a real tree next year.
Andrew has been on the longest, toughest, front line treatment plan for leukemia....with 15 months of intensive treatment and more than 2 years of maintenance....and it has really taken a toll on his little body.....but to finally see the light at the end of the tunnel is wonderful. He has handled it all with such bravery, it will be glorious to celebrate Thanksgiving next year, with Andrew off chemo!
And speaking of bravery....we went to Disneyland today (we didnt go Thursday as planned, as our passes were BLOCKED....and we sadly didnt get to see our friend Jackson and his family from my ALL-kids support group online), but we did go today. And guess what Andrew's new favorite ride is? Not Space Mountain, that was a couple of weeks ago.....nope, it is TOWER OF TERROR! When he got off he said, "I cant believe they let a 40 inch kid like me on that ride, it is really scary!"...but he wanted to go again!
Hopefully, I will be able to share all of our Wish Trip photos with you soon. The camera store was not able to read my photo card, and so they have sent it off to a "recovery specialist"...I should hear back soon, and just pray that the memories from that special trip will be saved. So, check back, there may be new photos from Florida up soon.
Thanks for checking with us and providing us with this support, it means a great deal.
Thanks also for praying for our friends....so many have relapsed lately, or are going through very tough times, including: Gregory, Elijah, Keegan, Victor, Libby, Alexia, Baby Donovan...and more....more than there should be!! I will try to get links up so you can visit them, and leave them a note that people are praying for them.
Have a great week.....Andrew returns to school and we all return to the normal grind.
Love,
Kim
Tuesday, November 22, 2005 11:54 AM CST Well, Thanksgiving is just around the corner, and of course, my mind is racing with all that I have to be thankful for.
So many people have come by our side to support us the past 2 years, 3 months, and 16 days (whose counting, right?)...and with all that is going on, I dont get a chance to thank people enough.
Here is a PARTIAL list of people that I am thankful for:
Grandma J: for always helping out and for spoiling the kids much more than anyone thought humanly possible.
My friends on ALL-kids: an online support group, for parents with a child with leukemia....they understand our journey more than anyone, and have provided life-saving information and support.
The folks at Caringbridge and all who donate to them: Where would I be without this website? It has allowed us to share Andrew's progress with all of you, and the messages we receive in the guestbook have been a tremendous source of strength.
Family and Friends: Old and new....for the meals, the babysitting, the gifts....the listening ear during tough times. For not abandoning us during this long and painful road.
CHOC Walk teams: All that have walked and/or donated to our CHOC Walk teams...it was a great inspiration for us to have so many join us, and you have helped so many kids!
TNT teams: both our fellow athletes and those that sponsored Doug and I...you are part of the cure...you are part of the reason that I can still post updates.
Our doctors, nurses and support staff at CHOC: What an amazing ministry you have, to go through all of this with us, giving your all to help us out and make this easier. We are so thankful for the care and treatment you have provided.
Our Prayer Warriors: I have no doubt that it was the prayers of those we know and those we dont, that led us to new treatment options, that strengthened Andrew during very weak days, that brought God's healing to Andrew when the chemo didnt seem to be working, and that have kept protection from side effects upon him. We are grateful for every plea lifted up, every thanksgiving uttered on our behalf.
And on this day, when I can look back at how far Andrew has come (new pictures in photo area)...I am Thankful to God...that He is a God of healing and love, that His plans for us are never to harm us, that He has continued with us, never leaving us. That even what the enemy meant to hurt us, God will use it to bring blessings....I am thankful that when we are staring death in the face, we know that either way, the outcome is eternal life with Christ, and nothing can rob us of that hope.
May you all have a wonderful Thanksgiving, and know that I appreciate each of you for coming to check on Andrew.
Love,
Kim
Friday, November 18, 2005 1:41 AM CST Hi Everyone,
I apologize, as I am overdue to tell you more about our wonderful trip....
We have been busy here, resting from the exciting week in Florida...
Andrew had his heavy chemo day on Tuesday. He went in for his infusion, had his labs (which look great).
I did notice that the official x-ray results were back (from when his port line was out of place)..they noted a few things re: his lungs, which indicated some bronchitis...and also again noted the osteopenia (this is thinning of the bones, and for it to show up on x-rays, there must be 50% bone mass loss.) We are following up with the osteopenia, and hopefully this is something that will be repaired in time.
We have also had many friends relapse this past week. I hope to put their names and websites up...and ask that you keep them in your prayers.
The pictures from our trip are on the digital memory card, which seems to be having problems. I need to take the card into a camera shop, and see if they can get my pictures. Please pray I can do this, otherwise I think all of our pictures from Florida will be lost.
Sorry this is so short, but thanks for checking in and I will update more fully soon.
Love,
Kim
Tuesday, November 8, 2005 11:15 AM CST Hey Everyone,
We are BACK! We had a fantastic trip, with non-stop fun stuff, the kids had a wonderful time, and Doug and I did too.
I have to give kudos to the kids, because our flights were not direct (we went with a stop in Chicago and our way home included a stop in Kansas City)..this made for VERY long travel days, and Andrew and Christine did amazing.
We stayed at Give Kids the World, a resort in Florida that was created for kids on "wish" trips. The founder, Henry Lindwirth, is a holocaust survivor....we were given his biography, and I am looking forward to reading it. He has created a magical place for kids, and mine LOVED the place.
We had so much excitement, it will be hard to recount it all...but I will give you the highlights...
Each day, we started off with breakfast at the village...either by going to the "Gingerbread House" which is a buffet style restaurant, sponsored by Perkins (a restaurant). Some days, we were in such a hurry, that we called for the "muffin cart"...yep, you just dial up and ask for the muffin cart and before you know it, they are at your villa door with a golf cart full of muffins, bagels, juice, mini-donuts, breakfast bars, etc. One day, we took a bag of mini-donuts and hit the road!!
We had 4 full days to enjoy the parks, and we made Universal a priority, and Im glad we did. Andrew was treated like royalty (we all were!). He was always wearing his Give Kids the World and Make A Wish buttons, and the cast of Universal seemed to have button detectors on, because they would spot us yards away, approach us and usher us onto rides, to spend time with characters, etc.
Our first day, we saw Barney, played in a cartoon town water park, rode a Jimmy Neutron ride and saw a Shrek 4-D show (these are the shows where you get sneezed on and such, lol)..there were also tons of characters. Christine was "nervous" about characters...heck, she wouuldnt even hug Dora! We got the kids autograph books, and this gave Christine incentive to get close enough to hand over her book...over time, she has become much more comfortable, even allowing hugs! Andrew was ALL ABOUT THE AUTOGRAPHS! He raked in quite a few.
The second day, we went to Universal Islands of Adventure...WAY FUN! We started off with the best part of the trip...meeting Spider Man (and many other super heroes)...Andrew spent quite a bit of time with Super Man, and also rode the new super man ride several times. The first time I rode it with him, and quickly gave that job over to Doug. It is a fast, jerky ride with amazing special effects....Andrew LOVED it, it was his favorite....
We also spent time in a dinosaur area, Dr. Seussville and more...it is a great park with a lot for little kids to do.
Disney, well, we broke all 4 Disney parks into 2 days...we have a lot of the same rides and shows here, so I planned for us to see the stuff that is unique to the Florida parks.
1st stop was Animal Kingdom...this is much more than a zoo! We saw the Lion King, Pocahontas, and Tarzan Rocks shows....they were fabulous! The kids saw a lot of Disney characters....went on a safari ride where we spotted all kinds of wild animals, played in a dinosaur area...went on a white water raft ride...it was a lot of fun!
Later that day, we cruised over to Epcot. They had Soaring over California (although they just call it Soaring)...and Andrew finally is tall enough to ride!! Andrew and Doug did a car ride that went over 70 miles per hour, and had a blast. The evening was spent strolling around the country areas, with lots of food to sample...it was beautiful and a great way to end the day.
The last full day, we went to MGM in the morning and caught the Beauty and the Beast show as well as an Ariel Mermaid show. This park reminds me a lot of California Adventure. We then hurried over to the Magic Kingdom, and saw the Cinderella Coronation, went on Splash Mountain, Big Thunder Railroad, Jungle Cruise (all Andrew's favs)....and even went on the Carousel of Progress (remember that from the old Disneyland, pre America Sings days??)
Our flight out of Florida was in the afternoon...so we spent the early part of the day at Gatorland. Andrew and Christine sat on a gator and held on to it's mouth!! They sat with a snake around them too. Let me just say, these two are not afraid of anything (ok, Christine is still a bit nervous around characters)...but after ever ride, they wanted more and they wanted to go faster! Christine was all about touching the snake and his face! They really had a great time.
In my next journal entry, I will share some of the fun moments from GKTW....every day, we left the parks, and headed back to the village where there was always a party of some sort.....
I will also work on getting up some pictures, and even video!
Thanks for your prayers for our safe trip....our colds and coughs were under control, and we all had a wonderful time.
Please pray for two more of our friends...we returned home to find that our dear friend Elijah is in need of a miracle. We met Elijah through Team in Training....he lives near us and is treated at Kaiser (so he doesnt go to CHOC with us). When Andrew was the hero of the cycling team, Elijah was the hero of the marathon team. Andrew and Elijah always had fun playing at TNT picnics, and they have been in our prayers. Elijah completed treatment for his leukemia, and then relapsed earlier this year. He had a transplant at the beginning of summer, but he has now relapsed again. They are hoping to be able to do a 2nd transplant...but will need many prayers. He doesnt have a website, but I will try to keep you posted. He will initially have very heavy chemo, to try to bring the leukemia back into remission (this may not be easy to do, and it is also VERY hard on the body). Please pray for God's protection and healing. His family is asking that people pray Psalm 91 each day for Elijah, and I would encourage you to commit to this for this sweet boy. Also, they are asking people to please register for the bone marrow registry if you havent already. I cant imagine the desperate feeling of needing for my child to have a transplant, and not finding a match!
Also, a friend from my ALL support group, Keegan, has relapsed. I should point out, that there has been great progress made in the fight against childhood leukemia, I often hear how "curable" it is....let me just say, this fight is never easy. Andrew has a "high risk, aggressive" ALL, and Keegan has the "good kind"...meaning, he has a cell type that is supposed to respond well to the chemo. There is never a good kind....Keegan has endured more than two years of damaging chemo, and now is facing his biggest battle yet. This past week, they found that the leukemia has come back. Please pray that his road to healing is sure, and that God protects him from the destructive chemo. His family used to live in Colorado, and recently moved to Georgia...so they are in Georgia, but you may notice that his webpage includes "co" for Colorado...please visit Keegan at www.caringbridge.org/co/keegan and let them know you are praying for him.
Ok, long entry....will work on those pictures.
Thanks for all of your love and support!
Kim
Monday, October 31, 2005 12:25 AM CST Hi Everyone,
Well, the excitement is thick in our house, as we prepare for Andrew's "wish trip". Dave, our 'wish granter', from Make-A-Wish, stopped by with some goodies for Andrew and gave us all the details of the trip.
We are going to Give Kids the World, in Florida. It is a special resort just for kids on "wish trips". I have heard it is an amazing place! They will provide us with tickets to all the Orlando area parks...we will focus on Universal, since they have a Super Hero section...and Andrew is all about Super Heroes right now. He is very excited to meet Spider Man!
We are all sick with a cough of some sort right now, please pray we get better and not worse :0
Andrew had a good weekend, with a soccer game on Saturday. He doesnt have much stamina, and usually only plays about 1/4 of the game. This week, his team was down a player, and they really needed him. He hung in for almost half the game, and then took a nap. I try to encourage him to keep playing, but I cant imagine doing much running around if I was on chemo....
He and Christine then had a slumber party with Grandma J. It was their typical "all nighter" making treats, staying up late to watch Saturday Night Live (and falling asleep too early to see it!)....they always have such fun.
This week, there will be a celebration of John Taggart's life. I cant think of anything more bittersweet than coming together to remember all the blessings that God gave through John, and yet knowing that they wont get to hold him here on earth again. I am comforted knowing that because of Jesus, "death has lost it's sting"...and it is only a temporary separation, until we are together in Heaven for eternity.
One of Andrew's favorite songs is, "When the Saints go marching in." (it is on one of his kids cds). I smile imagining John, marching in to Heaven, into the arms of Jesus. I am sad for his family's loss, albeit temporary, and pray that the Holy Spirit sends them overflowing comfort and peace. You can let God use you to be that comfort, by sending them a note of encouragement at www.caringbridge.org/ca/johntaggart
Thanks for your continued prayers and support....this is a long journey, and often people are surprised to know that Andrew is still on chemo, still waging a battle....and I appreciate your prayers that are helping us to get through.
Enjoy the new pics in the photo section.
Love,
Kim
Thursday, October 27, 2005 0:47 AM CDT Hi Everyone,
Well, things are looking brighter in our neck of the woods.
I am so excited to tell you that Andrew's port is back in place, and he did not need any surgery or procedure!!
This is really something, as the line was going straight from his lower rib into his neck. It should make a U-turn at the arm pit and point downward and go into his heart. So they were talking about taking the line out, or trying to fish it into place....and had us go get another x-ray so they could get a better look telling them exactly where the line was. Well...the x-ray showed that the tube had turned and was in his heart, exactly where it was supposed to be!
I cant imagine how this happened, except the hand of God turned the tube, literally bent it in the opposite direction. So Andrew will not need anything done re: this matter, Praise God!
I am feeling much better, and Andrew is doing pretty good. It takes him a while to bounce back, so he is still tired and has a hefty cough, but was able to go to school today. We are praying that he is feeling better when we leave on our trip to Florida...which will be very soon!!
I should tell you, that Doug was gone all week....(yes, that birthday of mine spent in the ER with Andrew, Doug was in Hawaii!!)....so, it made the week all the more difficult not having him here to help, as he really is a hands-on dad, so the kids and I missed him quite a bit.
But it looks as if things are getting back on track and we are looking forward to a nice weekend together.
Thank you for your prayers for our family, as well as those of our friends that are going through difficult times. There are few things that can bind us together like love and support, especially with God in the center.
Love,
Kim
Monday, October 24, 2005 4:18 PM CDT **Tuesday Morning update**
We are taking Andrew to CHOC to have our oncologist look at his "central line". They said they may be able to pull it into place without surgery, they are going to see....Ill keep you posted.
Hi Everyone,
Well, Andrew's oncologists wanted us to all get flu shots, so we did. Guess what?? now Andrew and I are having "flu like symptoms"...
We went to the ER with him yesterday, and the X-rays showed his lungs are clear (thank God). They also showed that his port line (the tube in his chest where all his meds are infused) is going up into his neck, instead of into his heart. I dont know what this means, and if we will need to have it fixed or not...Ill keep you posted, but please pray there is a simple remedy (or that it doesnt matter at all.) The ER doctor seemed very concerned, and wanted to take more x-rays to find out where it ended, and our oncologist said not to bother, that they would deal with it themselves.
Our Make-A-Wish trip to see Spider Man is coming up soon....please pray that we are all in good health (and that the weather is clear- our trip is to Florida).
Thanks for remembering the family of John Taggart in your prayers. You can leave them a word of encouragement at: www.caringbridge.org/ca/johntaggart
Love,
Kim
Sunday, October 23, 2005 0:19 AM CDT SUNDAY MORNING UPDATE~ Andrew is still feeling bad, and his cough seems to have gone into his chest. The doctor is having us go to the ER to get some chest X-rays, please pray that all is clear, thanks.
Dear Friends,
Andrew had a fantastic birthday week! It began with his party last weekend, included cupcakes and a pinata at school midweek, and ended with a special visit with Caillou on Saturday.
Caillou, for those out of the loop, is a cartoon character shown on PBS. He has a little sister, and friends, and Andrew has always enjoyed the show...Christine too!
We went and saw the LIVE children's show, and were able to meet with Caillou afterwards.
Honestly, Andrew was not feeling very well...he seems to be down with something, either from all the chemo this week, or a touch of the flu, as he had his flu shot this week (and perhaps he didnt have enough immunities to fight off the vaccine...) in any case...he has been sort of miserable, but hugging Caillou really made him smile....check out the pictures in the photo section.
As many of you know, Andrew has a Caillou doll that he played with a lot at the time when he was diagnosed. Caillou also happens to be bald, so when Andrew lost his hair, instead of being traumatic, he got a "caillou haircut". So this visit with Caillou was very special to Andrew.
We continue to be grateful for being able to celebrate Andrew's 5th birthday. We thank God that we have had him another year, and pray he is healthy for many more!
Sadly, some children with cancer go to heaven much earlier than their families had hoped. Our friend, John Taggart, is now with Jesus. Please pray that God strengthens his family, now and in the years to come, until they are with John again. You can leave them a message of encouragement at www.caringbridge.org/ca/johntaggart
love,
Kim
Tuesday, October 18, 2005 0:15 AM CDT Hi Everyone,
Today is a very special day for me....you see, about 5 years ago, EXACTLY...my water broke. I spent the next 24 hours waiting for my darling, baby boy to arrive. I expected October 18th would be his birthday, but by the time they delivered him (c-section)...it was 12:03am, officially, October 19th. So, Andrew's birthday is tomorrow, but somehow the 18th will always be my "labor day"...a day totally devoted to his birth.
Somehow, the carefree birthday of a 5 year old takes on a new perspective, when that child is battling cancer. Emotions are mixed. On the one hand, I am so thankful that we are celebrating and that Andrew has made it this far. There were times, when we didnt think this day would come. I still remember, too clearly, when Dr. Torno told us that he was not responding to treatment, and that his prognosis would be poor.
That night, there was a spiritual fight being played out in Andrew's body. We are so thankful for all the prayers that were lifted up, and the result, was that the chemo began killing off the cancer.
I am so grateful to God, that He heard our cries that night. As a result, my boy is big. He is going to be 5! He was only 2 when this all started, and we have been able to see him accomplish so much. We have enjoyed lots of wonderful activities, and created cherished memories.
This birthday is so special, as it is a testimony to the faithfulness of God and His healing upon Andrew.
Andrew's healing is a process. Especially as he still undergoes his chemotherapy, we know that prayers are still necessary, and birthdays are not taken for granted. On this day, while we thank God and celebrate Andrew's life, we earnestly pray that he will have many, many more!
Andrew was very excited to have a party, with a bounce house, slide and pinata. Unfortunately, we were hit with lots of rain, thunder and lightning (wasnt it just 80 degrees and sunny the other day???).
The folks at Chuck E. Cheese were very kind to us, so we moved the party to Chuck E's house. Andrew and his friends had a great time, running around with their tokens and winning tickets. Oh the joys of being a preschooler!
On Wednesday, the celebration will continue, with cupcakes (and the pinata) being brought to class.
And the grande finale, will be on Saturday, when we take Andrew to see Caillou LIVE!! We have a special "meet n greet" with Caillou planned...I know Andrew will be SO THRILLED!
As for me, nearly 5 years ago, I brought my baby home on my birthday. At the time, it was my best present ever!! I will never, ever need a birthday gift, other than to be able to celebrate Andrew's birthday...each year is better than the last, filled with the joy and thankfulness in knowing that God is hearing our prayers and healing Andrew.
Thanks to all of you for continuing to join us as we seek God's blessings, of healing and protection, and we reap the gift of watching Andrew grow up into an amazing testimony for Jesus.
Love,
Kim
PS. Thank you for keeping John Taggart and his family in your prayers. This is a very hard time, and I know your words of encouragement and comfort mean a great deal to them during this time. www.caringbridge.org/ca/johntaggart
Thursday, October 13, 2005 0:21 AM CDT Dear Friends,
We are very busy here. Andrew has had "Spirit Week" at school, which included "crazy hair day" (he wore his spiked and blue!), and tomorrow is "sports" day where he can wear his soccer uniform. Friday is "Grandparents Day" and he and Grandma J just love this sort of thing...I know they will have fun.
Andrew's birthday is this next week too, the 19th...it seems like just yesterday....from my water bursting while I slept on the toilet (long story) to the 24 hours of labor and a c-section with no real pain meds.....to holding the most gorgeous baby, with LOADS OF BLACK HAIR (hard to believe)....it just doesnt seem like it has been 5 years!
Andrew has gone through so much. When I held him as a newborn, I imagined a great deal, but never all of this. He has handled his battles with gusto and spunk, and continues to do well. Please pray that the chemotherapy will continue to do it's job, with minimal side effects.
I am very sad to say, that Andrew's friend, John Taggart, is not doing well. His cancer has spread, and he has run out of earthly, medical options. I do believe that God listens to our prayers, and can heal John.
It is never God's plan to harm us, to allow us to suffer, it just is not who He is. Unfortunately, we live in a fallen world, with an enemy that roams around seeking to destroy us. That enemy has had his claws in John, but I know that God is able to be victorious...please pray for John's healing.
I do know, that God promises, that even what the enemy meant to harm us, God can use for good. I pray that John's battle is used to share God's mercy to many. That people are encouraged by his bravery, his parents faith, and the work of God in the midst of it all.
No parent should have to bring their child home, to make them comfortable...without hope of a cure....I cant imagine the heart ache.....please, leave his parents a message, letting them know that many are praying for John and that his battle has touched you. I know it would mean a lot to them during this time. www.caringbridge.org/ca/johntaggart
love,
Kim
Friday, October 7, 2005 1:42 AM CDT Hi Everyone,
Andrew's lab work came back and he is strong enough to be put back on 100 hemo!! Yeah!! Please pray that his body is strong enough to handle it, and that the medicine is effective at killing the cancer but goes easy on the rest of him.
We are so very sad that our friend, John Taggart is struggling in his battle. Please pray for John to be healed. I dont believe God ever has it in his plan for little children to get cancer, just as I dont believe he plans for any person to reject the Gospel...but we know both happen in an imperfect world. I know that God wants only what is good, and I ask you all to pray that the battle going on in John's body is won through healing and renewal, and that the enemy trying to hurt John is destroyed. Please pray for him parents, siblings and entire family, as it is not easy to watch a little one suffer. I am sure that during this very heart-wrenching time, they would appreciate a message in their guestbook, just letting them know that they are not alone, that people all over the country are praying for John. His website is: www.caringbridge.org/ca/johntaggart
Thank you, and thanks for all of your encouragement.
Andrew has a busy weekend planned, soccer, birthday parties...things every kid should experience for years to come.
Love,
Kim
Monday, October 3, 2005 6:20 PM CDT Hi Everyone,
Well, we enjoyed another CHOC Walk in the Park...our hospital fundraiser through Disneyland. This year our team, Cancer Cuties, had nearly 200 walkers. There were hundreds of financial team members too, those that didnt walk but donated to a walker. We are grateful to each member of our team, and appreciate the love and care you show us through your committment to the CHOC Walk and Cancer Cuties.
While some may have wondered, initially, if it was worth it to get up so early....it was evident very early on, that CHOC Walk is a priceless event.
Throughout the walk, we met lots of our CHOC friends...those that we get treatment with at the Cancer Institute, nurses and doctors that provide our care, and we also saw families and friends of children that had received care years before and were now doing well...and sadly we were reminded of friends that are now in heaven...remembered by teams carrying banners with their names and pictures.
We also enjoyed seeing our Disney friends; Minney, Mickey, Woody, Brother Bear, Sleeping Beauty, Mulan, and many more....it made the day very special for all of the kids, and the adults too. I have some pictures up in the photo album, showing the highlights of the day.
Andrew is off to a great start of the week. Tomorrow he goes in for blood work. His counts have been low lately, so they still dont have him on full strength chemo. We will go back tomorrow, and hope that his counts are high enough to move him closer to his full dose. Please pray that we would be able to get him back to his full strength asap, and that in the meantime, the lowered doses are effective at killing off the cancer.
Thanks for your support!!
Love,
Kim
Sunday, September 25, 2005 5:37 PM CDT Hi Everyone,
We are having a great weekend. Andrew had his spinal on Friday, and handled it like the trooper that he is. I have included a photo, for those of you interested in what his treatment involves. The spinal, also known as a lumpar punture "lp", is done under conscious sedation.
Andrew is given two drugs, versed and ketamine. Versed is used to relieve anxiety and impair memory, so that Andrew wont really remember the procedure. Ketamine is most commonly used as an animal tranquilizer, and is also a popular "rave" drug. It causes hallucinations and disassociation, and renders Andrew physically incapacitated.
So, while he is technically awake, can feel what is going on (these drugs are not pain relievers) and can talk and groan, he cant really move, is not fully aware of what is going on, and wont remember what happened.
If you look in the picture, you can see that the paper under him is wet. His spinal fluid is dripping out of the needle and Dr. Torno is collecting it in a vial (which will be checked for cancerous cells). After she collects the spinal fluid, she connects a syringe to the needle (you may notice the end is thick and the syringe can screw onto it.) The syringe than injects chemotherapy into his spinal column, replacing his spinal fluid that was collected. The chemo then circulates throughout his system and around his brain, killing off cells.....prayerfully we hope it is getting the cancer and leaving his brain and neurological cells alone!
Sometimes he also gets Bone Marrow Aspirates (he doesnt know the difference.) The "BMA"s involve a similar procedure, however the needle goes deep into the bone, and pulls out marrow (the inards of the bone).
Andrew says that when he grows up, he wants to be a doctor and give bone marrow aspirates!! yuck!!
On to more fun things...Andrew had a soccer game on Saturday. While we dont keep score (it is all for fun), Andrew's team did shoot more goals than his opponents. Andrew enjoyed being with the team, but didnt feel like playing much. I have included a picture of him and his good friend Brandon. They both play on the sharks (Doug and Brandon's dad are the coaches) and they both attend Stoneybrooke school.
Andrew did a very sweet thing today. We had gone to the party store and the woman recognized Andrew (she has been praying for him) and gave him a balloon. It wasnt just any old balloon, but a cute "pacifier" shaped balloon. Andrew was thrilled to have it. Once we got home, he said he wanted to give it to Pastor Dick and Great Grandma, two loved ones that have gone on to heaven recently.
Andrew loves to let balloons go, giving them to friends in heaven. He watches it drift off, and believes that those in heaven are going to get the balloon as a special gift. Today he said, "I can see Pastor Dick, he is trying to grab it, I can see his face." Once the balloon is out of sight, Andrew smiles, knowing that he succesfully sent a present to those he loves. I have included a picture of Andrew and Christine sending off the pacifier balloon. Andrew also made some pictures and wrote a note to Pastor Dick and Great Grandma, and attached them to the balloon.
We have a great week planned ahead, which culminates with the CHOC Walk on Sunday. We will go to Disneyland on Saturday and spend the night...and make a fun mini-vacation out of it. Thanks to all of you that signed up to walk with us. I really had not intended on putting a big team together this year, but we have nearly 150 walkers!! If you would like to support Andrew, you can go to www.chocwalk.org, register online, support a walker, his ID is "Andrew". I look forward to seeing all of the team on Sunday, for another great CHOC Walk.
Thanks for your continued prayers, and please send extra prayers up for our friend John, www.caringbridge.org/ca/johntaggart asking God to send John the miracle of healing.
Love,
Kim
Thursday, September 22, 2005 6:18 PM CDT Hi Everyone,
Andrew has had a great week. He is enjoying school and building new friendships with his classmates.
He is also excited to do the CHOC Walk again, a walk through Disneyland that raises funds for Children's Hospital. Today, he went and visited the Tesoro Cheerleaders (our local high school) and invited them to walk on our team, the "Cancer Cuties". Last year many of the girls walked with us, and Andrew developed crushes on them all!
If you would like to sponsor Andrew in the CHOC Walk, and support the great work of healing at our hospital....we would greatly appreciate it!!
You can go to www.chocwalk.org "participate online" and then "sponsor a walker"....Andrew's ID is "Andrew"
Andrew had his spinal postponed until tomorrow (for no important reason, just scheduling). He will have it done at 9am...please continue to pray for his remission and protection from damaging side effects.
We are having a busy weekend, filled with soccer...it is wonderful to see Andrew living a life filled with smiles.
Please continue to pray for our friend, John Taggart, as he is in need of God's miraculous healing. www.caringbridge.org/ca/johntaggart
Love,
Kim
Sunday, September 18, 2005 11:45 PM CDT Hi Everyone,
We came home from the hospital this evening. Andrew's chest is clear and his fever is down. He is still going to continue with two antibiotics (he was on 3 in the hospital)...just for good measure.
He was given the "all clear" to go and enjoy normal life again, so tomorrow he will go back to school, and he is excited. He was really worried (ie. pestering me all week) tht he missed the crafts at school.
On Tuesday, he will go in for his spinal. This is where is put under conscious sedation, and a needle is placed into his spine. They remove spinal fluid and check for any cancerous cells. They also inject chemo into his spine, that "washes" his brain and kills off any cancer hiding in his spinal fluid (many of the chemos dont cross the blood/brain barrier, so it is necessary to have spinals to keep him in remission). Please pray that his brain is protected, as the spinals can be very damaging, especially since he has had radiation.
We have met with our "wish granters" from the Make-A-Wish foundation, and we are moving forward with a trip to Florida in November. Andrew is excited to meet Spiderman and other superheros while there...
Thank you for keeping us held up in prayer, and for encouraging us with emails and phone calls.
Love,
Kim
Saturday, September 17, 2005 11:09 AM CDT SATURDAY UPDATE: THE NURSE JUST BROUGHT ME THE X-RAY RESULTS THAT INDICATE ANDREW HAS PNEUMONIA. I DONT KNOW IF THAT MEANS WE HAVE TO STAY HERE LONGER OR WHAT, WILL KNOW MORE AFTER I SEE THE DOCTOR. PLEASE PRAY THIS IS RESOLVED QUICKLY.
Hi Everyone,
We are still here in the hospital. Andrew had a chest x-ray and some other stuff, and we are waiting for the results.
His fever seems to have subsided....hoping that means they will send us home soon.
I am sad that he is missing his soccer game today....he also missed 3 days of school this week and soccer practice last night. I pray that as winter draws closer that he stays healthy and can enjoy all the fun normal things that are planned for him. He is bummed out that he missed the crafts they did at school, and didnt get his "treasure box" surprise on Friday.
He is in good spirits now, making "crafts"...his favorite thing to do. Currently his project is a beaded necklace with his "ID badge" on it, just like those worn by the hospital staff. His badge has his picture, his name, and of course a cadeuses on it.
Ill keep you posted, and am grateful for your prayers and messages of encouragement.
Love,
Kim
Friday, September 16, 2005 8:43 AM CDT Andrew has a 102 fever, so we are going back to the ER and will need to be admitted.
Ill keep you posted. Please pray he is feeling better soon and that we can come back home.
love,
Kim
Wednesday, September 14, 2005 1:01 AM CDT Hi Everyone,
Thank you so much for all of your prayers, emails and messages. We are so thankful to be able to tell you that Andrew's ultrasound was clear...and he is still in remission!! It was not easy waiting 3 weeks to get this confirmed, but we have breathed a huge sigh of relief, thanking God for His continued healing in Andrew.
On the not so wonderful note....our family managed to find itself in Urgent Care/ER twice today!!
First, Christine fell during my Bible Study child care, and hurt her arm. She whimpered for over an hour, and wouldnt move it much, so I took her in for X-rays! I was imagining my little princess in a pink cast....but am happy to say nothing was broken. She had what the doctor calls, "nursemaids elbow", which is basically having part of her elbow dislocated. The doctor popped it back in by hand, which was very painful, but only briefly, and Christine is now back to normal.
Currently, as I write this, Andrew is at the ER with Doug. Andrew developed a sudden and severe cough and asthma attack this evening. Steam baths and an inhaler did not help much, so he is getting treated at the ER. We are praying that he is able to come home tonight and that he will get past this quickly. The lucky part, is he doesnt have a fever, otherwise we would be stuck inpatient...so, that is the silver lining here!
Andrew had a great soccer game this past Saturday. Even though we dont keep score for his age group, I can tell you that his team outscored the other 4 to 1. Andrew only played about 1/4 of the game, as he tires easily...but he still enjoyed being part of the festivities and wearing his uniform. I have some pictures and will post them up soon.
Thank you for your continued prayers for our family, and our friends. Tomorrow, we will celebrate Pastor Dick Cobb's life, as well as his passing on to heaven. Pastor Dick had such joy about being able to see Jesus face to face, and while he will be missed greatly, we rejoice in knowing he is with our God.
CHOC WALK UPDATE....the fun walk through Disneyland is just a few weeks away. Please join us, to raise money for Children's Hospital of Orange County. You can go to www.chocwalk.org for more info. Please register to participate and join "Cancer Cuties" I will send all team members details as the walk date approaches.
Love,
Kim
Thursday, September 8, 2005 10:08 PM CDT Hi Everyone,
Andrew is really enjoying his first week of school. He has a wonderful teacher and some great classmates (only 7 kids in the class, how wonderful is that??)
I have posted some pictures, one on the first day, and one on "chapel day" - with Andrew in his dress shirt and tie!
We had his ultrasound today, but wont know the results for 5 days. Thank you to everyone for praying for Andrew's continued remission, I will let you know as soon as I get the results back.
Andrew has his first soccer game this weekend, as well as team pictures...I will make sure to take some myself to post for you all.
The CHOC Walk is coming up and Andrew has formed a team with some of his friends that are also battling leukemia. We would love to have all of you join us, go to www.chocwalk.org and register to join Cancer Cuties. It is a fun time, as we walk through Disneyland....entertained by characters and music along the way. It is Sunday, October 2nd at 7am, and it is usually over by 9am.
Thanks for your continued support.....your prayers have brought Andrew this far....able to participate in school and soccer....there were many times we wondered if Andrew would get to experience these childhood milestones, and we thank God everyday for how strong He has made Andrew, and the healing work He has done in Andrew.
love,
Kim
Friday, September 2, 2005 11:49 PM CDT Hi Everyone,
Today, was a very special day, as Andrew met his new teacher, Mrs. Thompson and his Junior K classmates at Stoneybrooke. He wanted to bring his teacher flowers, so we went to the local florist, and the very patient designer walked Andrew through the coolers, so he could pick the best flowers. He picked bright gerber daisies...actually, he wanted "two of each"...(meaning every flower in the store!)...but we limited his selection, and he chose a beautiful bouquet. It was all very heartfelt, and he insisted on carrying it himself to give her. His teacher seems to be wonderful, exactly who you would want to be inspiring your child. His classmates and their parents all seem very nice too, we are looking forward to a wonderful year!
We were able to get Andrew's dexa scan completed, however we are waiting for our doctor to read the results.
I had mentioned that Andrew's counts have been low (probably from the virus he had while in the hospital last week)....so they reduced his chemo. He will go back on Tuesday for more blood work, and hopefully we will be able to increase his chemo back up to full strength.
Next Thursday, Andrew is scheduled for his ultrasound. I am pretty sure it is nothing, but I will be relieved when they can tell me for sure that he has not relapsed. It has been a long week and a half of waiting!
Tomorrow, Andrew and Christine will go with Grandma J to celebrate her birthday and have a sleep over. I understand she has stocked up on craft supplies, and Andrew is particularly excited to make some "flip flops"...I hope he doesnt insist on wearing home-made sandals in public!!
Andrew also participated in his teams soccer practice for the first time tonight.....he had missed the first two. He had fun with his friends, and is excited when he makes a goal.
Thank you for faithfully praying for Andrew. When I see how good he looks and feels, I know it is because God is hearing so many prayers for healing. Many people are surpirsed that Andrew's hair is so thick and healthy. Truthfully, there are kids on less chemo that have no hair.....it is a possibility that it could thin out or fall out completely, but we are grateful that it is growing nicely now, and that he is able to look healthy again.
Please continue to pray for our friend John Taggart. His cancer has relapsed again, and he and his family need a miracle; www.caringbridge.org/ca/johntaggart Also, Pastor Dick Cobb is struggling in his battle with cancer. We know that our God is able to heal them, and we ask that you would pray that He do just that!
Our family is praying for the Katrina victims. Andrew has gathered up some of his toys to give to "the kids in Louisiana", he picked some of his very favorites, I am proud of him. Please consider donating to a charity, such as Samaritans Purse or the Red Cross. Locally, we are helping to organize donations, and if you live in Ladera, please drop items off at Ladera Ranch Realty through the weekend.
And lastly, The Trojans kick off another winning season this weekend.....Fight On!
Love,
Kim
Tuesday, August 30, 2005 1:22 AM CDT Hi Everyone,
We had a great camping trip up in the Sequoias. The kids were in awe of the large trees, bears, deer and even the chipmunks. There were some kids in the campsite next to us, and Andrew wasted no time in going over and making friends. Both kids were great little campers, and Christine is an amazing little hiker!
I posted some new pictures, one is of the kids on the John Muir Trail, pretending to be deer (we had just seen two deer in the campsite next to us right before leaving for the hike). I also posted a picture of them swimming in Hume Lake...they had so much fun.
Andrew didnt always feel that hot on the trip, as it was his steroid and chemo week....but he was a trooper and enjoyed himself much of the time.
As for me, well, Im COVERED in bug bites!! There are more than 30 on the underside of my arm alone! Luckily, nobody else has my "sweet blood" and were spared this torture.
Medically, we have an appointment tomorrow for Andrew's dexa-scan, which will give us more information about the condition of his bones. In May, x-rays showed osteopenia, and indicated that Andrew had lost more than 50f his bone mass. The Dexa Scan will be more thorough re: bone degeneration. Bone mass can be made up at his age, however, some issues may need medication or orthopedic surgery....depending on how severe.
RE: Andrew's enlarged testicle, we are still waiting to get our authorization for his ultrasound...it seems there was a mixup between the benefits coordinators at the hospital and with our insurance company...but I hope they will get us seen soon, as it is not easy waiting a week to rule out a relapse! This thought is already haunting the back of our minds, so when the doctor wants it ruled out, I think it should be done immediately!
Thanks for keeping Andrew and our family in your prayers. Please continue to pray for our friend, John Taggart, as he is facing a difficult battle; www.caringbridge.org/ca/johntaggart
Love,
Kim
Friday, August 26, 2005 0:48 AM CDT Hi Everyone,
Thank you for the prayerful emails and calls. We are still awaiting an appt. to have Andrew's ultrasound, but are hopeful that everything is fine. I will keep you posted once I get the appt. and then the results.
We are heading to Sequoia National Park to do some camping. The kids are very excited to sleep in a tent again, and so are we.
So many of you have signed up to join our CHOC Walk team...the "Cancer Cuties". Everyone is encouraged to join us...it is $25 per walker, and is a fun time strolling through Disneyland. It is early Sunday, October 2nd...you can sign up at www.chocwalk.org and register as a "cancer cutie" team member. I will keep you posted re: our team info. Last year we had over 300 walkers and raised $40,000 for the hospital. This is a valuable cause, as they provide many pediatric specialists to sick children in the county.
I will update when we return from our trip, and hope to have some great camping pics to show you too.
Please pray that Andrew remains safe, especially with his counts low, he is less able to fight off illness.
Love,
Kim
Wednesday, August 24, 2005 1:28 AM CDT Hi Everyone,
We had a long day at the clinic, as they were really busy. Andrew was brave, and took the big needle into his chest without tears....I dont know how he does it!!
The doctor always check his testicles, as part of his exam. The reason for this, is that the leukemia can hide there. Today she noticed that one is larger than the other and seems to have excess fluid. She noted that it probably is not a relapse, as that usually presents as hard, rather than as fluid. However, she does want to do an ultrasound to be 100 ertain. Please pray that this turns out to be nothing. I dont yet know when he is having the ultrasound, I will keep you posted.
After we returned home, the doctor called to say that his blood work was back, and his counts are still too low. It is most likely because he was fighting an infection last week. However, to continue with full strength chemo could cause him to get very sick and his counts to further bottom out (which would force him off chemo for longer)...so, the lesser of two evils is to reduce his chemo by 50 or a couple of weeks, and then recheck his blood work. Please pray that his counts improve (and his body continues to fight the cancer with only 50 f his chemo).
Finding school uniforms has been a bit of a trick. Andrew wears 2T clothes and most stores sell the uniforms from 4T on up. I am having a tough time finding them in his size, especially the pants. On a positive note, he did hit the 38" mark today, bringing his growth to a full 2 inches since his diagnosis. Yeah!
Thanks for your prayers,
Love,
Kim
Sunday, August 21, 2005 11:22 PM CDT Well we made it home and are looking forward to sleeping in our own beds and enjoying home cooked meals again. Hospital life does wear on the spirit, and it is also hard on Doug and Christine...she misses her mommy and brother so much now that she is old enough to know we are gone. Hats off to Doug for juggling work, caring for Christine at night and managing to visit us too....I know he is looking forward to a normal week.
Now we press on with regular things, like shopping for Andrew's school clothes, getting his hair cut (can you believe he needs a hair cut again??), and on Tuesday he goes back in for his chemo infusion.
Thanks for all of the kind words, calls, emails, messages, and gifts.....we all appreciate the support as we continue to move through this trial.
Love,
Kim
Saturday, August 20, 2005 3:42 PM CDT Thank you for keeping Andrew in your prayers, and for encouraging us with the emails and notes in the guestbook.
Yesterday, they decided to halt his eating and drinking by mouth (he wasnt doing much anyway), and added additional fats and nutrients (tpn) via IV. It was a chance to give his body a rest from digesting foods. He continues to have very liquid stools, but less often than he had been (it was every 2 hours, now it is about every 5). He was still nauseaus, but we kept him on IV anti-emetics, which seemed to have done the trick.
Today, they decided to reintroduce bland foods, and see if his tummy can begin handling the digestion. We will also stop the anti-emetic, and see if he can keep things down. Please pray that he is able to do this, as it is the first step to getting better, going home and resuming his chemo.
Once he can keep foods down and digest them without becoming dehydrated, we will probably be able to go home....Im hoping that will be by tomorrow..so please continue to pray.
Thanks for the support you have shown us through this bump in the road!
Love,
Kim
Friday, August 19, 2005 1:39 PM CDT Hi Everyone,
Well, I just got the news that we are not going home today. Andrew continues to have severe, very liquid stools, and his "out take" is more than his intake. They have him on very high levels of IV fluids, and he is still dehydrated.
They are also looking to see if he has rotovirus. This is a common virus that causes diarrhea ..and not a big deal for healthy kids, but for kids like Andrew with a low immune system, it can hit them hard and take a long time to recover.
Andrew's counts (immune level) has dropped quite a bit, typical when hit by a bug....
He is feeling pretty good most of the time, but his tummy and bottom are sore, as you can imagine.
He is really bummed that he missed soccer camp, and tonight is the first real practice for his team, The Sharks....as well as his friend's bday ...he will have to miss them both, as well as another friend's birthday tomorrow. I guess I am bummed too, as it has been so great to see him enjoying life as a regular kid, and being back here (with the constant reminders of the ravages of childhood cancer) is rather depressing.
Please continue to pray that his body can fight this bug and get back on track quickly. Also, since they have halted his chemo until he recovers...pray that his body keeps the cancer in check.
Love,
kim
Thursday, August 18, 2005 0:39 AM CDT We are still in the hospital. Andrew is apparently very dehydrated, and they are giving him extra, extra IV fluids. He has barely had any urine outpoot, although late tonight he finally had a small amount. He is also still vomitting and have very liquid stools. I know, too much information for a website, and one day Andrew will be embarassed for sharing this...but it is all keeping him dehydrated and still running a warm temp.
He was very lethargic today, not eating at all, but seemed to gain more energy later tonight....getting some of his chattiness back.
Thanks to Grandma J for coming up with a craft kit....he LOVES it (it has been the subject of his chattiness!)
Thanks too for the friends that called to check on us, left messages in the guestbook, or sent us a caring email. It does get lonely for us here, especially when he is missing so much fun back at home. We are confident that there is much more fun to be had and we pray that he is better soon so that we can resume with healthy life.
They have stopped his oral chemo to give his body a chance to fight this, with lowered immunities, things hit him harder and take him longer to recover. Please pray that God heals him of this bug quickly and gets us back on track with his chemo, so that he can continue to fight the cancer.
Love,
Kim
Wednesday, August 17, 2005 4:42 AM CDT This cancer stinks!!
Andrew is running a high fever, and has also been vomitting, so it's off to the hospital we go.
Christine was throwing up this weekend (although she didnt have a fever), so we are hoping it is just a "bug".
The thing that really stinks, is that he has been over the moon about soccer camp, and today is "wacky wednesday" where he gets to do something crazy to his hair (we were going to gel it into spikes)....now he will miss the entire rest of soccer camp week, and probably the two birthday parties he has this week......as well as his first team soccer practice on Friday. It isnt fair that he gets robbed of these things!
I should be thankful that he has been able to enjoy so much lately, especially when we have friends that are still going through tough times.
Additionally, we had some important preparation days at his school coming up and we will have to miss those too.
Please pray that the entire family mends quickly from this, and that Andrew can resume "normal" kid life soon.
Im off to the ER now.....Ill update later.
Love,
Kim
Saturday, August 13, 2005 10:09 PM CDT Hi Everyone,
Andrew is doing well. He is supposed to get his infusions of chemo this next week, but he also has soccer camp all five days. Our oncologist said it would be ok to push Andrew's chemo visit out a week, so that he can enjoy soccer camp.
This week, Andrew and Christine both enjoyed lots of fun. Friday, they went to the beach with their friends, and had a blast. Christine loved the ocean, and Andrew had fun building in the sand. Neither one enjoyed having all the sand rinsed off of them at the showers....but it was a small price for all the excitement.
As I have reflected on Andrew's two year anniversary with leukemia, it was the 14th of August that was the darkest. On that day, Andrew's 7th day of chemo, they did his blood work 3 times. They did this because they wanted to make sure, and it confirmed that his cancer cells were not responding to the treatment, but were in fact growing. Dear Dr. Torno pulled Doug and I aside, into the hallway, and gave us the horrific news, "He isnt responding, tomorrow we will check his bone marrow, but I want to prepare you that we expect a poor prognosis."
I still remember feeling like I would lose Andrew forever, it hit me that this was all very real.
We asked what we would do next, and she hesitated and said, "there are some rescue therapies we might be able to try." That is medical talk for "nothing really".
It was then that we put out a major plea for prayer, and our pastors came up to the hospital. We prayed all night, remembering the stories in the Bible were God raised the dead, healed the sick, and we asked for God to do the same for Andrew.
The next day, Dr. Torno came to us, and before she could say a word, I knew. Her smile was from ear to ear and she hugged us and said, "Praise the Lord, it is a miracle!" His cancer cells were greatly reduced, and his body was finally responding to the chemo.
I am so grateful, that two years later, Andrew is running, playing, swimming.....on that dark day, I would never have thought we would be where we are today...doing so well with treatment!
Thank you for all of the prayers, past, present and future. It makes the world of difference to have so many praying for Andrew, we believe it is what brought that miracle two years ago, and it will be what heals him completely.
Speaking of how thankful we are.....Our CHOC Walk team is growing...and we would love to have you join us. The walk is Sunday morning, October 2nd at 7:15am. The cost per walker (children 2 and under are free) is $25. Please join us and help support all the kids at CHOC; www.chocwalk.org sign up for "cancer cuties".
We are gearing up for Andrew's school year, getting his uniforms and school supplies....he is WAY excited!!
Thank you for praying, not only for Andrew, but for many of his friends. Gregory is at home again and doing better...he still needs lots of prayers; www.gregoryconklin.com John Taggart is facing a tough battle, please pray for him too; www.caringbridge.org/ca/johntaggart
Our pastor, Dick Cobb, is also going through a rough time with his battle with cancer. He has defied the odds many times, and we are praying that his latest experimental drug holds a miracle. Please pray with us, asking God to provide him strength and good health.
Love,
Kim
Tuesday, August 9, 2005 1:17 PM CDT **IT'S CHOC WALK TIME***
Hi Everyone,
Andrew is having a great week. This weekend he enjoyed the "Kick-Off" BBQ of his new soccer team, the Sharks. The kids chose the name, and during the selection process, Andrew suggested the "Blue Bears"....this seemed to be the popular choice amongst the children, but they (thankfully) changed their mind and voted for the Sharks. Andrew is still a tad upset about this, he loved the Blue Bears name, and thinks that sharks are mean (he doesnt get that you WANT to have a "mean" name in a competitive sport). Anyhow, he met some great teammates and is looking forward to a fun season.
We are also gearing up for the CHOC Walk. This year, we are joining forces with Andrew's friend Bailey. She is a neighbor girl that is battling leukemia. She and Andrew are the same age and have forged a special friendship through their treatment, showing off their ports and exchanging stories and crafts during hospital stays. You can visit Bailey at www.caringbridge.org/ca/bailey.
The CHOC Walk team name is Cancer Cuties. We would love to have you walk with us and help support kids who are courageously fighting for their life. You can go to www.chocwalk.org and register as a team member for Cancer Cuties. Once you have signed up, I will contact you with
team info.
Speaking of supporting brave warriors, our friend John Taggart has just received devastating news. He is facing relapse again, and the tumor seems to be pressing on his face and eye (pictures on his website show how it impacts his face, but cant break his smile). Please pray for John and his family, I know they would be encouraged by a word of support in his guestbook; www.caringbridge.org/ca/johntaggart
Andrew is taking a break from swim lessons, so he can fully absorb the "soccer" and "Junior K" experience. We are hoping to start back up in early Winter (he goes to an indoor pool for lessons.) We are proud to say that he is a really great swimmer, and able to swim the length of the pool on his own. He is also a great floater! I took a picture of Andrew and his buddy Brandon (also on the Sharks and going to Stoneybrooke school with Andrew)...however, it is on my new picture phone, and I dont have the slightest idea how to get the picture on to the computer. If any of you techies now how, please advise!
Enjoy the last days of summer,
Love,
Kim
Friday, August 5, 2005 9:53 AM CDT Dear Friends and Family,
Sorry it has taken so long to update. Things have been busy, and I have returned to work part time, so I dont get to sit at the computer as much as I used to do.
Since I last wrote, Andrew had a couple more strange bruising/spots, and we went to the hospital again to make sure he wasnt getting a blood infection. Thankfully he was always fine and we he is home and doing well.
It was exactly 2 years ago, that I woke up and knew that I had to do something about all the bruises on Andrew. We had moved into our new house just a few days before, and the house was filled with boxes. I had noticed the bruises for a few weeks, but Andrew was a very active 2 year old, and there was much to climb on with all the moving preparations. I originally attributed his bruises to climbing on everthing as we prepared to move. Once settled into our new house, I noticed that he was getting more "hand and finger tip" bruises. Any time I touched him he would bruise....again, I first excused them and thought I must be grabbing him to hard when I would lift him in and out of his car seat, maybe the stress and rush of the move was causing me to be less than gentle. However, on the morning of August 5th, I noticed a finger tip bruise on his chest. Nothing I came up with could explain it, as I knew I would never put pressure on his chest for any reason.
Andrew did not have any of the typical symptoms, such as fevers or recurring infections, he just had bruises.
I do believe God told me that he had leukemia, as that morning, I called a neighbor that had leukemia and told her that I thought Andrew might have it too.
Andrew's doctor was on vacation, so I took him into the urgent care, and asked the doctor to please do a blood test.
The doctor was an older man, who brushed off my concerns, but at my insistance he did the blood test, as he said, "to see if he has an iron deficiency". I knew better, as Andrew was a hearty and healthy eater, I couldnt imagine with his diet that he would have any deficiencies.
Andrew didnt even blink during his blood test. He was so brave, and he then went on about our day.
The next morning, I received a voice mail from the doctor. He stuttered and stammered as he recounted Andrew's lab results. All I heard was "high lymphocytes". He also said in the message that Andrew would need to be followed up with a bone marrow aspirate. He never said cancer, but I knew.
I quickly called our doctors office and tried to get another doctor to get us in for the bone marrow aspirate as soon as possible, I didnt want to put it off.
That afternoon, I received a call back from Dr. Shen, an oncologist at CHOC. She told me we would need to come down immediately, and Andrew would have a bone marrow aspirate.
Now, we live down the street from CHOC at Mission, and I assumed that is where we would go to have it, and that we would return afterwards.
Dr. Shen cleared that up and said we would need to come down to CHOC in Orange, and that we would be staying 2 weeks or more!!
Christine was only 6 months old, and I was still nursing her (and Andrew). How could I be away from my baby for 2 weeks?? CHOC at Orange is not very close...Doug has to work....this did not seem possible.
Dr. Shen sensed my resistance to this whole plan, and she told me, "He has an aggressive type of leukemia, you need to come now, we need to start treatment immediately."
Well, I think that is when the floor opened up and I began my free fall, into a pit of fear and pain and grief.
My neighbor took Christine, and agreed to go buy formula.....Doug had come home and we rushed up to CHOC with Andrew.
He still remembers the horrific time they had trying to start his IV. The past two years are filled with many more memories for him, some good, and some a toddler should never experience.
We are grateful that he is doing well in his treatment, and Thank God for bringing us to this two year mark. We are appreciative of all of you for not giving up. If you are reading this, you still care and are still praying. Many people have disappeared over the two years, but we are so thankful for those of you that have stepped up by our side and replaced filled in the gaps.
Andrew still has a year and a half left of chemo. It takes a toll on a little body and we are always praying that God protects Andrew while killing off the cancer.
Another praise, is that Andrew is back in the regular swing of life. He is starting Junior Kindergarten soon, and he is also starting soccer. Doug is coaching the team and tonight we are having our "kick off BBQ". Please pray for Andrew's safety against childhood illnesses, as we have had a few scares lately. Diseases that our normal for many kids can be life threatening to Andrew, since he does not have a strong immune system. As he spends time with children, please pray that he is protected from any illnesses.
I had also asked you to pray about his physical therapy, as I was having a difficult time getting an appointment. They finally offered me an 8am spot....and that was my only choice! If you live in the area you realize that for me to get to our hospital during rush hour, would mean leaving my house well over an hour in advance. So, waking up to get Andrew fed and dressed would mean waking him up by 6am. This does not seem reasonable to me, as he is still undergoing chemo, tires easily and needs his rest. He nornally wakes at 7:30, so I just cant see waking him early and expecting him to be ready to do physical exercises....I dont think it is a good time, and therefore have opted not to do therapy (since that is our only time.) We are going to look into the orthotic devices that the therapist mentioned, to see if that will keep Andrew's ankles strong and prevent any further problems.
I hope you all have a great weekend, and I again thank all of you for your continued love and support.
Love,
Kim
Saturday, July 16, 2005 7:59 PM CDT Dear Friends and Family,
We have returned home, and Andrew is in good spirits. Thank you for your prayers, we are happy that this visit was short. Thanks to all the folks at Doug's work, as they were wonderful in letting Christine spend the day with Daddy on Friday while we were in the hospital.
While inpatient, Andrew had his OT eval, and I am so happy to tell you that his fine motor skills have greatly improved and are normal (and above). His love of crafts are probably a key factor in this improvment, as well as the neurontin that alleviates the pain in his joints and bones. We are very thankful that God has healed this aspect of Andrew, and pray that He continues to do so.
As we were leaving the hospital this afternoon, we learned that our friend Gregory was actually returning to CHOC, and there are concerns that he has gone into septic shock again. Please pray for him, his healing, and his family!
I heard many, many staff at CHOC talking about the miracles that God has done in Gregory.....let's pray that the enemy is not able to bring discouragment, but that God would continue to heal our friend! His family could sure use support, please let them know that you are praying for Gregory; www.gregoryconklin.com
Monday Andrew will go in for his chemo infusions, he also takes more oral chemos next week, including steroids :0
I am including the update I wrote yesterday, although I was unable to post it (so typed it into the guestbook instead.)
Love,
Kim
Hi Everyone, For some reason I can not update the webpage. We are still in the hospital (Friday night), but Andrew seems to be feeling better. His cultures and x-rays are negative thus far, and we hope to go home tomorrow.
While here, we were able to see Gregory's sendoff home. We are amazed at the miracles God has done in his life, and after nearly 5 months, he will get to be home with his family. He still has a very tough road, as he is unable to speak or move his limbs. He is also still on a traech, which requires frequent suctioning. Please keep him in your prayers, and consider welcoming him home. www.gregoryconklin.org
We were sad to find out that our friend Omar relapsed after his bone marrow transplant. He and his family were a great source of encouragement to us when Andrew was diagnosed. He relapsed in the Fall and we have been praying that his tranpslant went well. Unfortunately, he relapsed again. He requested to go to Mexico to be with extended family, and we expect he will be an angel soon. He was a wonderful young teen, a strong Christian, and we look forward to seeing him in Heaven. Please pray that he is able to go peacefully, and that God comforts his family during this time.
I will update more later, and hopefully I can do so on the front page.
Love,
Kim
Thursday, July 14, 2005 9:52 AM CDT Hi Everyone,
On Monday, Andrew was showing petichae, which is breakthrough bleeding under the skin. It was disconcerting, as petichae and bruising are the only symptoms he had when diagnosed. We took him to the clinic to do labs and check his platelets, and thankfully they were fine. The doctors said that the capillaries become weak and damaged from all the chemo, and this could cause the petichae.
Last night, Andrew didnt feel that great, he kept wanting to cuddle, and by morning he had a high fever. We are taking him into the hospital this morning...please pray that all is well, and that we can return home asap.
Congratulations to Katie for being our 100,000th visitor. You can visit Katie at www.caringbridge.org/ca/kathryn
Thank you to all 100,000 of you (ok, I know most of you are repeat visitors)...we thank God for your love and prayers, and appreciate your messages to cheer us up and let us know you are rooting for us.
Ill update when I know something more.
Love,
Kim
Saturday, July 9, 2005 0:56 AM CDT Good Morning Friends and Family,
As Andrew approaches his 100,000th visitor, I thought it would be a good time to reflect on his journey thus far.
It has been nearly 2 years, and Im sure on that Anniversary I will reflect on this all again.....but for now, I think back at all he has gone through.
For those of you that see Andrew in action, he looks perfect! His hair has grown back, he has added 13 pounds, now tipping the scales at 35 lbs. In fact, I must hear many times a day, "wow, we are glad to hear he is all better." and other wonderful praises about his healing.
While we are thankful for what God has done, and how He has strenghtened Andrew, we also know that he is not out of the woods.
Many people are surprised to learn that Andrew is still on a regimine of 4 different chemos, and he takes chemo every single day. He still feels nauseated and has side effects, but he is on medications to help keep those in check.
Leukemia, being cancer of the white blood cells, and in Andrew's case, his t-cell's or "infection fighting cells/immune system", is different than tumors.
With a tumor, someone is considered "in remission" when the tumor is gone. With leukemia, most kids get a "technical remission" by the first week or so (if not, they would not survive, as ALL has a survival rate of only a few months if left untreated.)
So, what does it mean that Andrew has been in remission since the first week? That is pretty quick in the cancer world, yet childhood leukemia has the longest treatment plan. What the heck is up with that??? Even adult leukemia typically only has 1 year of chemo, why do kids get 3 or 4 years??
Well, when they check his blood for cancer cells, they are usually only checking 100 cells. If less than 5 of them are blasts (the immature leukemia cells) than they are considered in remission. But in reality, doctors know that there are still leukemic cells circulating throughout the body...they cant check all of his blood...so they check a sample. Research shows, that if they dont continue treatment for 3-4 years, that one little leukemic cell that may be hiding will begin multiplying, bringing back the cancer.
Additionally, childhood leukemia is treated differently than adult leukemia. There is much more research for adult cancers, and so most of them have a determined plan of action. For kids, however, they are less certain about the treatment, and most of the kids are on clinical trials.
It is true that the survival rates have improved tremendously over the past decade....but the long term side effects are the price. We are just now seeing lots of kids surviving into adulthood, and for the first time doctors can monitor what 3-4 years of chemo does to a child's developing body.
The list of potential problems are pretty horrific; cataracts, hearing loss, heart problems, brain damage, stroke, brain tumors, adult leukemia, brittle bone disease (and other bone issues), and more....
While we are thankful that Andrew is doing so well, we also know that we have a long road to go.
Lots of people ask me when Andrew will be cured.
First, Andrew must get through the next year and a half of chemo. After that, we wait and see if it will come back. T-cell ALL has a higher rate of relapse than the more common ALL (b-cell), but much of the risk is in the first year or so after chemo ends.
Even after Andrew is years away from ALL, he is now at higher risk of developing AML as an adult (another type of leukemia), and brain cancer. This is because the chemo and radiation that is making him better now, CAUSES CANCER.
As you can see, we need a lot more research, so that leukemia can be cured without destroying the person in the process. (for those that feel inclined, there is a link for CSMAKER at the bottom of this page, a neighbor raising money for the Leukemia and Lymphoma Society by running a marathon....thanks to you Carrie and Tammy for showing us support in this way!!)
For this reason, we continue to covet your prayers. We still battle a very frightening disease, we still worry about the war waging inside of Andrew's veins, and we know that the healing that God is doing in Andrew is a work in progress.
As parents, I guess this has gotten easier. It certainly helps that we have been able to rejoin the world, now that Andrew is in maintenance. The isolation of the first year and a half was very difficult on all of us.
It helps that Andrew looks normal and feels better. No longer do we see a bald waif, with sunken in eyes, crying and sleeping all the time. He is enjoying life, and we are grateful for this time that God has given us with Andrew.
I cant say we dont worry about losing him....we do. I dont think a day goes by that we dont feel the grip of fear that childhood cancer brings, but I think we spend less time wondering about what songs we would play at his funeral, what favorite toys would be put in his casket, and more time looking forward to the fun he will have in Junior K, what sports he will play in school, and how many children he might have when he is a daddy.
I want to thank all of you for staying with us through this journey and continuing to hold us in prayer. Many of you have contributed to our fundraisers, made us meals, sent us cards and special gifts for Andrew.....and visited his website.
If you have never left a message in the guestbook, please do....it will be wonderful testimony for Andrew when he grows up, to see all the people that were praying for him. For those of you that have already left a message.....leave another one, we love hearing from you and your caring words always cheer us up.
May you call have a great weekend!!
Love,
Kim
PS. still planning on getting those 4th of July pictures up.....hopefully tomorrow.
Sunday, July 3, 2005 11:01 PM CDT Happy 4th Of July
We are so lucky to live in a country where we can choose our career, live where we want, develop friendships and worship God. Thank you to the United States Military for making sure that our freedoms remain for generations to come.
We are having a fun weekend. Today, cousin Taylor came to visit. She lives in Florida and will be in CA for the next month. We are hoping to get more time with her. We had a BBQ today, finished off with s'mores by the fire ring...check out the new pictures.
I also have a picture up from our camping trip...the kids had so much fun last weekend.
We are very blessed, that our neighborhood puts on a huge Independence Day extravaganza, complete with a parade, carnival, music and amazing fire works display.....we are looking forward to celebrating with friends and neighbors.
Andrew is feeling pretty good. Thanks for your continued prayers. One area that needs prayer, is his physical therapy. There seems to be an administrative snafu, actually, one of the gals that works there seems to be blockading our ability to get an appt (sounds crazy, but I guess they are pretty booked up, and this person thought that going above the doctors head and changing the insurance authorization would remove her of the burden of having to find a spot for us!) Needless to say we are having to put in extra time and effort to straighten this all out, and Andrew's therapy is being delayed in the process.
Check out the new pics...and have a fantabulous, free and fun 4th of July!
Love,
The Spragues
Sunday, July 3, 2005 11:01 PM CDT Happy 4th Of July
We are so lucky to live in a country where we can choose our career, live where we want, develop friendships and worship God. Thank you to the United States Military for making sure that our freedoms remain for generations to come.
We are having a fun weekend. Today, cousin Taylor came to visit. She lives in Florida and will be in CA for the next month. We are hoping to get more time with her. We had a BBQ today, finished off with s'mores by the fire ring...check out the new pictures.
I also have a picture up from our camping trip...the kids had so much fun last weekend.
We are very blessed, that our neighborhood puts on a huge Independence Day extravaganza, complete with a parade, carnival, music and amazing fire works display.....we are looking forward to celebrating with friends and neighbors.
Andrew is feeling pretty good. Thanks for your continued prayers. One area that needs prayer, is his physical therapy. There seems to be an administrative snafu, actually, one of the gals that works there seems to be blockading our ability to get an appt (sounds crazy, but I guess they are pretty booked up, and this person thought that going above the doctors head and changing the insurance authorization would remove her of the burden of having to find a spot for us!) Needless to say we are having to put in extra time and effort to straighten this all out, and Andrew's therapy is being delayed in the process.
Check out the new pics...and have a fantabulous, free and fun 4th of July!
Love,
The Spragues
Thursday, June 30, 2005 3:32 PM CDT Dear Friends and Family,
This week started out with sad news, as Andrew's Great-Grandma Sprague passed away. We have cherished pictures of her hugging Andrew when he was younger, and we will miss not having opportunities to spend more time with her. She lived a long-full life, for which we are grateful, we only wish the children could have known her more.
Also, sadly, Uncle Damon is having emergency surgery today for a giant stone of some sort. So he, Kelly and cousins Ty and Zac will not be coming out to visit. We are very sad, as we were looking forward to seeing them all. We are keeping Uncle Damon in our prayers, that his surgery goes smoothly, and hope the family can make it out here sometime this summer.
Andrew kick started his summer, with a camping trip with his Aunt Joyce and Uncle Art. The kids had a great time, and enjoyed going out on a boat. Andrew reeled in his first fish, and is very proud of himself. One tip to those going camping this summer, if you hear things at night, and it sounds like there are prowlers in your camp, it may just be dozens of rabbits and skunks!! Sorry to Uncle Art for waking you up in the middle of the night...but thanks for making sure we werent being attacked.
Andrew continues to feel pretty good. We finished steroid week (yeah!!) and his neurontin continues to be effective at taking care of his bone pain. We are still trying to get his physical and occupational therapy lined up, but due to several administrative mishaps and a lack of therapists, the treatment we were supposed to focus on this summer is being pushed off. Please pray that we can get this taken care of, so that Andrew can strengthen his muscles.
We hope you all enjoy the holiday weekend, and special thanks to Uncle John and the other servicemen and women that give us the opportunity to celebrate our country's freedom.
Thanks for your prayers.....we know they have allowed Andrew to bounce back and do well with treatment.
Love,
Kim
PS. will post new camping pictures soon.
Saturday, June 25, 2005 11:57 PM CDT Dear Friends and Family,
We hope that Summer has started off well for all of you.
Andrew is feeling well, I can really tell that the neurontin (fairly new med) is helping with the pain in his bones (nerves). Thank you for your prayers, as we know that God is using this medication to help Andrew enjoy life.
We are expecting to start his physical and occupational therapy soon, which should help with his muscle weakness and limited range of motion. He also continues to participate in piano (to help parts of his brain resist affects of radiation), gymnastics (rebuild his bone mass, build muscles, increase range of motion), and swimming (muscles and flexibility). He thinks that he gets to do all these things for fun, because Im such a nice mom....little does he know I have alterior motives. Actually, he does complain a lot that he doesnt want to go to gymnastics because it is too hard, but by the time he gets there, he has so much fun that he forgets he is working. He loves to show me his muscles and tell me how strong he is getting, he is very proud of this, and I am too.
Another answer to prayer is that Andrew has grown again!! He is now 38.25 inches!! If he grows one more inch, he will be back on the growth chart (at the "3nd under mark)....YIPPEE!! He needs to grow 3 more inches to be at the 25ark (where he was from birth-diagnosis), and we are hopeful that he will catch up...as he seems to be doing.
Andrew had a fun week, beginning with a water-play day with friends from his pre-k class. He has made some great friends, and they all got along well, running and splashing about in the water park (Im hoping to get a photo from another mom and will post it up). The only down side was when Christine pooped in the toddler pool (if any of my neighbors are reading, she had on a cloth/rubber swim diaper AND plastic pants!)
The kids had a slumber party with Grandma J Friday night. Too bad for Grandma that Andrew is on steroids, and woke up in the middle of the night begging for "85 hashbrowns" (his food fetish of the month). Grandma was able to hold him over with Scooby Doo graham crackers, which they all sat up and ate in bed (in the middle of the night)...sounds like so much fun, sorry I missed it (ha ha).
We are now getting ready to go camping for a few days. Dad will have to stay home, as he has already used up his precious vacation time...but the kids and I will meet up with Uncle Art and Aunt Joyce and some friends. Both kids are very excited to sleep in a tent, go out on Uncle Art's boat, and shine their flashlights.
I have put some pictures up from Sea World....no fish or dolphins or sharks, but pictures from the Polar Bear exhibit. This is the exhibit that Andrew begged us to go to, only so he could scream and cry like I have never seen....afraid of the (fake) growling bear.
I have to say, it is so nice to be able to write journal entries about happy things. We havent forgotten the many days and nights spent in the hospital, all the vomitting and pain Andrew has suffered, and we have many friends still going through those tough times. We are ever mindful that Andrew is not "out of the woods" but we are also thanking Jesus that he has come so far and is handling his treatment well.
Please keep our friends in your prayers (John, Gregory, Noah) and please consider supporting TNT (Leukemia and Lymphoma Society) as it is an important part of getting Andrew better, and we pray that continued research will make it possible for all of our friends to enjoy water parks and Sea World, camping and time with family. Our neighbor is training for a marathon, giving up time away from her own little boys to help make a difference for other kids....if you would like to support her....the link is on the bottom of the page (CSMAKER).
Next week, Aunt Kelly, Uncle Damon and cousins Ty and Zac will come out for a visit, cousing Taylor will be here too....we cant wait to see them!!
Thanks for sticking by us and for all the encouragement.
Love,
Kim
Thursday, June 23, 2005 0:27 AM CDT Hi Everyone,
Andrew is enjoying his first week of Summer, although he misses school, his friends, and the projects.
Monday he went in for all his chemo stuff, and it went VERY WELL. He had a spinal tap of chemo, and usually he requires the maximum amount of sedative...and even then he has really been screaming and fighting it lately. He is still awake during the spinal, but very drugged. He hates the feeling of the sedatives, and he usually vomits for the hour or two after it is done.
Well, this time, instead of being honest....I Lied!! Thank you to Mary and the nurses for going along with me (they like to be honest and build trust, and I *usually* do too!)...I told him he was not getting a needle in his back and I asked them to give him his sedatives while he was playing, and told him it was one of the chemos (it goes into the iv that is in his port)....the result, was that he was not expecting it, he didnt fight it, and he had the spinal with less sedative than usual. He still screamed a bit, but was overall very cooperative. Also, less sedatives mean less vomitting, which we enjoyed!
Being the precocious 4 year old that he is, I have had many lectures from him the past 3 days, about lying and how he wont trust me if I lie about getting needles in his back, but for this month, it worked!
This week is "steroid week", and the emotions are in full swing! Andrew's new phrase is, "how dare you!"...as in, "how dare you give my favorite bowl to Christine" "how dare you forget to buy me cheese at the store." "how dare you make yucky food I dont like"......how dare I!!
On Fathers Day, we went to Sea World, and the kids had fun. Andrew was so excited to go back to the Polar Bear exhibit, where they have a "real" cave with a "real" polar bear (fake caves with a recorded 'growl')...he kept talking about it, so we finally went over to the exhibit. Wouldnt you know he screamed and shrieked in fear like I have never seen!! I have pictures, I will try to get them up soon. We also enjoyed petting rays, watching dolphins, shamu, sharks and other sea creatures. It was a great way to celebrate how much we appreciate Doug (our resident marine biologist), and what a wonderful dad he is.
Thank you to so many for praying for our friend Gregory, God has brought him many miracles lately, and you can see for yourself as his website has lots of new photos; www.gregoryconklin.org
Also, please pray for our friend John. He is undergoing cranial radiation this week and next. He has neuroblastoma, a pediatric cancer that has caused tumors in his leg, brain and elsewhere. John has relapsed before, but we are hopeful that the God of miracles will heal him. Please let John know you are praying for him, kids having cancer is pretty scary for the mom and dads, and it is very encouraging to know others are praying. www.caringbridge.org/ca/johntaggart
Thanks for your support!
Love,
Kim
Sunday, June 19, 2005 0:39 AM CDT Hi Everyone,
Andrew is doing well. His bone pain seems to be responding well to the new medication (neurontin). He complains that his legs get tired and sore, but he is no longer crying and complaining of pains in his arms/legs/hands (he was crying even when he was not using the limb). Thank you for all of your prayers!! Andrew will have a dexascan soon, to further evaluate the condition of his bones.
A huge thanks to everyone who came and had some lemonade last Saturday. Our small-town "Alex's Lemonade Stand" did very well. Even in the rain, we managed to raise over $600!! We may even have that doubled, as we are still waiting to hear about matching funds. Honestly, it was too cold to drink lemonade, so we didnt sell a lot, but people were very generous with their donations, and for that we are grateful. We also want to thank our sponsors; Pavilions (who donated much of our supplies), Party Land in Ladera Ranch (for the GORGEOUS balloons - they open July 2nd, so I encourage all locals to check them out in the Pavilions center.) Avery Dennison (for the cool signs and posters), For all the merchants in the center for allowing us to put up signs and promote the stand (special thanks to Toy Town for showcasing Alex's book, "Alex and the Amazing Lemonade Stand"...available on amazon.com), and Westar and Associates (the property management company that allowed us to have the lemonade stand in their shopping center.) All of these folks helped make our day successful.
The icing on the cake, or should I say the sugar on our lemon, was hearing that Afleet Alex won Belmont. Afleet Alex is a racehorse, and a portion of his winnings go to Alex's Lemonade Foundation....the come from behind win will further move us closer to a cure for pediatric cancers!
Thursday, Andrew had his last day of Pre-K! He has loved school, especially the crafts and projects! He also has made some wonderful friends. Next year he will be at a different school, when he enters "Junior Kindergarten" (he will be able to attend the same school through 8th grade). I cant believe my little guy is so grown up. These small milestones make us grateful. When you hear that your child has cancer, you live with the fear that they may not reach the next milestone. We know that Andrew would not have survived his cancer more than a month or so, but with the advances in treatment, we have been blessed to have him for so much more....so, as he completes Pre-K and moves on to the grown up world of Junior-K, thanks to all of you that have financially supported the "cause" and prayed for a cure...we thank you for being part of the reason that we get to enjoy this right of passage with Andrew.
Andrew will be going in for his monthly chemo infusion and a spinal tap of chemo on Monday. Please pray that it will be effective in killing off the cancer, while protecting him from the damaging side effects.
We hope you all have a great weekend!!
Love,
The Spragues
PS. I will try to get new pictures up soon!
Thursday, June 9, 2005 8:05 PM CDT Hi Everyone,
We are back from our big trip to Tahoe. Daddy and the team did great, and TNT raised a grand total of $7 MILLION dollars at this event.
Andrew is so much healthier this year, and it made us really appreciate all the hard work people are doing to help find a cure.
You may remember that last year, we drove up, as Andrew was too sick to fly. This year we all took a plane (2 of them)...and let's just say that Doug and I have about 97 reasons why we will drive ourselves next year.....for starters, when you are in your own car, your kids can sit the whole time (and sleep), you dont have to drag them off planes, across terminals, wait in lines, look for bathrooms...you can eat whenever you want (thanks to drive thrus)...you can listen to music, did I mention it is much more relaxing to sit on your rear and drive than carry kids and luggage across aiport terminals??
The travel days were an adventure, and last night we had some delays, so we didnt get home until 9pm. The kids were tired, and so were we....but the whole thing was a lot of fun.
The actual bike ride was cold and windy, a real tough one for the riders, most did great...although our coach Lesa was unable to finish :(...instead, she joined our Peanut Butter N Jelly crew. A huge thanks to Mary, Vicki, Stephanie, Lesa and Shanna as they helped make over 500 PBnJ sandwiches. Blanche and the gang from New York helped us pass them out as riders whizzed by....it was a lot of fun!
It was great to meet families from my ALL-list serve.....we re-kindled with Grant's family (his parents both did the ride), we saw Brandon's dad on the ride (but we missed seeing Brandon and his mom this year), and Kelsey and her family were there for support too.
We met some ALL-list friends for the first time; Ali and her family (her mom and sister did the ride), Spencer, his mom and grandparents....whom we were able to spend a few days with after the ride. (more on that part later).
We loved seeing Missy and her friends...who rode for the North Carolina team...we met them last year and were happy to connect with them again. RAINBOWS MISSY!!
A big hug goes to Aunt Kathy....she is from Florida (she is technically cousin Taylor's aunt...but we are claiming her as our very own!!) She rode on Andrew's behalf, and did great! We were there when she crossed the finish line and gave her lots of hugs...WE ARE PROUD OF YOU AUNT KATHY!
We want to thank all our friends at the County, for making us some great signs! These folks have supported Andrew is so many ways...we feel fortunate to have them all as friends.
After the ride, there was a victory party....my kids should have been asleep, but dancers that they are, they stayed up and boogied (Christine even sat on the floor, spinning like a break dancer!! She didnt learn that in ballet!) I have some cute pictures that I will post later.
We were able to extend our vacation, and we spent a few days with Spencer and his family. His grandparents were extremely hospitable, and we stayed at their home in Truckee. Our first night, we watched it snow!! The kids loved it and had fun making snow balls the next morning. It was great to finally meet Spencer and his mom in person, and we continue to be thankful for how well he is doing.
Thank you to all of you that sponsored Doug and helped further the important research of the Leukemia and Lymphoma Society. We really appreciate the dollars and prayers, and know that they are making a difference.
I want to mention (to those of you that havent grown tired of this update)...that Andrew will be hosting an "Alex's lemonade" stand this weekend. Alex Scott lost her battle with cancer last year, but not before raising nearly a million dollars with lemonade stands. Her legacy continues, with lemonade stands being held in every state in the USA - with all monies going to support the treatment of pediatric cancers.
Andrew will be at the Pavillions in Ladera Ranch (corner of Crown Valley and Antonio)...Saturday, June 11th from 10am-5pm. We will have copies of Alex's book, "Alex and the Amazing Lemonade Stand" on sale, it is a very heartwarming, inspiring story. Thank you to Pavillions, Party Land and Avery Dennison for generously supporting our lemonade stand.
Our friend, John Taggart (www.caringbridge.org/ca/johntaggart) will also be hosting a stand. He will be at Fashion Island on Sunday from 11-4, across from Bloomingdales. There will be music, cookies, balloons....and of course, delicious lemonade!
We hope you can stop by for some lemonade....what a great way to help make kids better.
Tomorrow is our swimming day, the kids really enjoy their lessons, and it is wonderful to see Andrew splashing around like a fish...and Christine like Ariel the Little Mermaid.
Thanks for your continued support!!
Love,
Kim
Thursday, June 2, 2005 0:02 AM CDT Hi Everyone,
Long time no write...sorry about that.
Andrew is doing great. He is still having some pains, including arms, legs, hands and back. He was started on neurontin which is supposed to help with the pain associated from his neuropathy (damaged nerve endings from the chemo). We are still waiting for the meds to kick in. We will also be doing a bone density scan, and looking further into his osteopenia (bone thinning) to make sure the pain is not being caused by damage to his bones. We appreciate your continued prayers in this area.
Andrew is finishing up his first year of school at Childbridge, Pre-K. He has really enjoyed attending, and done very well. His favorite subjects are "crafts and projects". Everyday he asks me if he will get to make crafts, and when I pick him up he tells me what crafts he made....and gives me a critique of whether or not they were good ones or not. He is looking forward to attending school in the fall (Stoneybrooke Christian), "Jr-K". He will attend 5 1/2 days each week, and wear a uniform (which he thinks is pretty cool!) He really wants to know if they will have good crafts at the new school.
Another of Andrew's favorite things at school, is his friend, Angelica. She truly is an angelic girl, and Andrew speaks often of wanting to marry her!! When I pick him up, he and Angelica exchange lots of hugs before he goes. I have put a picture up in the photo section from a school event last month....the beautiful blonde in the pink bow is Angelica!! Andrew has high standards!
We are all getting ready for our trip to Tahoe.....we are excited to go up and cheer on the riders. We will also get to see some friends...including Spencer Rocket. We will stay up there with him and his family a few extra days...a long awaited visit with dear friends.
Some of our neighbors called recently, to tell us that they had just signed up to complete a TNT marathon. They are very excited, and so are we!!! I have included a picture of Carrie and Tammy....they live here in Ladera. If you feel inspired to donate, I have included the link to donate to Carrie....it is wonderful to see people reaching out to help others...please support Carrie if you can.
Thanks to all of you for the continued love you have shown us....I want to especially thank those of you that have contributed to Doug's ride this year, THANK YOU!! Please pray that we have a safe trip.
Love,
Kim
PS. When you look at the pictures, notice the one taken last June with daddy, and the one taken today, a year later.....look how much better Andrew looks!! Thanks for all those that contribute to blood cancer research.....you are saving lives!
Monday, May 23, 2005 11:55 PM CDT Hi Everyone,
Today we were told Andrew's (tentative) end of treatment date: November 24, 2006! It will be a month after his 6th birthday. Since he began treatment at 2 years 10 months, it is weird to think that all of years 3, 4 and 5 will have been on chemo!! More than half his life!!
We will look forward to that day....and are thankful that he has come so far, and is doing so well.
Andrew got all his heavy chemo today, and is also being put on a new drug; neurontin. This should help with his neuropathy (the pain in his bones and joints). He is also going to have a bone density scan, to give us more information re: the extent of his osteopenia (bone thinning).
He is feeling pretty good, and will return to school tomorrow.
Thanks for all of your prayers.
Love,
Kim
Sunday, May 22, 2005 10:40 PM CDT Hi Everyone,
Thanks for all of your prayers. Andrew is back home and feeling fine. He still has a bit of a cough, but it on some strong antibiotics.
You all know we would rather not have hospital stays, but I have to say that Andrew get's lots of special attention...and of course, I get to lie around in my pjs all day! I guess there are two sides to every coin.
Tomorrow we go to the cancer clinic for his monthly IV chemo (vincristine). He also starts his steroid week, and takes oral methotrexate as well as mercaptopurine. Please pray that these medications will continue to be effective against the cancer, while causing minimal side effects.
Thanks for your continued support!!
Love,
Kim
Sunday, May 22, 2005 10:40 PM CDT Hi Everyone,
Thanks for all of your prayers. Andrew is back home and feeling fine. He still has a bit of a cough, but it on some strong antibiotics.
As much as we arent thrilled to be in the hospital, I have to say that Andrew get's lots of special attention...and of course, I get to lie around in my pjs all day! I guess there are two sides to every coin.
Tomorrow we go to the cancer clinic for his monthly IV chemo (vincristine). He also starts his steroid week, and takes oral methotrexate as well as mercaptopurine. Please pray that these medications will continue to be effective against the cancer, while causing minimal side effects.
Thanks for your continued support!!
Love,
Kim
Saturday, May 21, 2005 2:55 PM CDT Hi Everyone,
Yesterday, they told me Andrew had a small spot of pneumonia on his chest x-ray...which was a surprise to me! However today, he really is sounding like he has a ton of congestion and wheezing in there. His fever is gone, so that is a plus. He is on two heavy, IV antibiotics, so we are hoping that anything that can be killed off will be!
We did do a bone marrow aspirate this morning, as our doctor agreed that there was some lingering concern re: relapse. Mary, the amazing Nurse Practitioner who performs the bone marrow aspirates, said that the marrow pulled out easily (this is a good sign, as with relapse, it is often packed in tight and hard to pull out.) While we dont have the results yet, we are happy to hear that it come out easily. Andrew did scream through the procedure, I could hear him down the halls.....poor thing! He doesnt feel that great right now, vomitting a bit, but should be doing better later.
Last night, in the middle of the night, he woke up crying that his port hurt (the IV needle is pushed into the port on his chest). So the nurse came, and pushed and prodded, and determined that it was leaking. This whole thing was very painful for Andrew, and he pulled the port needle out himself! The nurse reinserted the needle, and it wouldnt flush...Andrew was still screaming in pain....some other nurses came in the room to see if they could figure out the problem. Eventually, they pulled that port needle out and inserted a 3rd...which worked fine. I feel so bad when Andrew has to go through these things...there is nothing I can do to take away the pain...he really is just so brave to continue to endure all that goes along with his cancer treatment.
We are hoping to go home today, with some antibiotics, now that his fevers are gone.
Doug and his team are riding 85 miles today!! I spoke to him on the road, and apparently some of the riders crashed and there are some injuries. These people are riding and raising funds to help find a cure for blood cancers....our prayers are with them!! It is not too late to donate to this great cause...the link is at the bottom of the page. Thanks to so many of you that have supported Doug...the Leukemia and Lymphoma Society does amazing work and has funded a lot of the important research that allows us to have hope for Andrew.
Love,
Kim
PS. ***SATURDAY AFTERNOON UPDATE ***
Andrew's marrow results are clear!! YIPPEE! We are so glad and thankful for all the prayers. They would like to keep an eye on his pnuemonia, so we wont be going home today. Please pray it clears up with his current meds.
Friday, May 20, 2005 1:49 PM CDT Hi Everyone,
We finally made our way through the ER and into our bed at CHOC, our heads hit the pillow just after 3am.
Andrew has a cold, and I have it too (Im achey, but nobody can give me medicine here, since Im not the patient. UGH!)
Andrew has been wheezing off and on, slightly, so we are keeping our eyes on that as well.
We are all wondering if we should do a bone marrow aspirate....pretty sure there is no need (fevers and achey bones can be a sign of relapse)..his counts look good, which indicates he is still in remission....but as one doctor put it, the bone marrow aspirate would get rid of the "shadow" of wondering about relapse...letting us move forward with more assurance. We will probably do one tomorrow.
Thanks for your prayers and support....Ill update more later.
love,
kim
Friday, May 20, 2005 0:26 AM CDT Hi Everyone,
We are on "fever watch", it has all the drama of "storm watch" but instead of a doplar radar machine, I have a thermometer!
Andrew has had a low fever (99-99.6) all day. We have very strict fever guidelines (if it is 101.5 or higher, you immediately go in.....if it is 100.5 for 4 hours, then you go in). Tonight at 8pm, Andrew hit 100.5, so now we are waiting to see if it goes down before midnight....if it does, we can stay home. Of course, we will be up checking it around the clock, in case it goes up to the 101.5 number.....(you see where the drama comes in ?? running in to check his fever every hour through the night!!)
Please pray that his fever goes away....even if you are reading this tomorrow, God is not bound by time/date, and even if you pray tomorrow, He knew it yesterday! So pray now, it will matter :)
Love,
Kim
Sunday, May 15, 2005 11:32 AM CDT Dear Friends and Family,
Andrew is feeling much better!! We came home Friday evening, and have spent the weekend getting some rest.
Somehow, a mom and son on a twin bed, in a room that is lit up from the hallway...a hallway often filled with talking and commotion (even in the middle of the night), well...that mom and son dont always get much rest (especially when the mom has one arm hanging off the mattress..causing it to fall asleep off and on.)
I will say, that the new IV pumps at CHOC are much quieter than the old ones, you dont hear the engine cranking all night long anymore.
So, we made it home, and have already had 2 nights in our own beds! :)
Thanks to all of you for prayers, visits, gifts, phone calls and emails of support!! It really does mean a lot to us. Also, thanks to our friends that offered meals for Doug....after a long day at work, he has to care for Christine (and try to visit Andrew when he can) and it sure helped not having to worry about dinner too. It was nice for me to know that our friends had rallied to support my family, while I was away.
Andrew feels pretty good. We will be starting physical therapy each week again, to help him build his calf and hamstring muscles, and correct some of the poor habits that he has developed in compensating.
We will also be adding some extra calcium to his diet, to see if we can minimize the thinning of his bones.
We appreciate your continued support!!
Love,
Kim
Friday, May 13, 2005 11:17 AM CDT Hi Everyone,
Andrew's last high fever was on Wed night...since that time he has had normal temps. He is on 2 heavy antibiotics and 1 anti-fungal, and I am hoping that if anything was festering it has now been killed off.
We saw the physical therapist while we were here. Andrew has improved so much in the past 6 months. He is able to climb stairs again, and recently has been really strong in riding his bike. The phsical therapist did not some areas of concern, mainly weak hamstring and calf (this is from his meds)...and it is causing him to develop some bad habits in compensating. We are going to begin physical therapy again, so that we can focus on brining Andrew back up to speed in this area.
We expect to come home later this afternoon, and are so happy for that.
They decided not to do a bone marrow aspirate, as his fever and pain have gone, and his counts continue to look fine.
Thanks so much for all of your prayers, love and concern. We are grateful to have so many people to lift us up and encourage us during these bumps in the road..and throughout Andrew's treatment.
Love,
Kim
Wednesday, May 11, 2005 9:03 AM CDT Hi Everyone,
Thank you for keeping us in your prayers!! We appreciate the calls, emails, visits, special gifts and messages in the guestbook.
Andrew is continuing to have high fevers (104+). His bone pain gets very bad at times. Monday night we were all up night crying with it, as we were a lot yesterday, but thankfully last night he seemed more comfortable.
X-rays of his legs show osteopenia, which is thinning of the bones. This is not a surprise, as his chemos cause this.....but it should not be a source of pain. This makes Andrew susceptible to fractures and breaks - please pray for protection from them.
The doctors will probably do a bone marrow aspirate in the next few days, to make sure that Andrew is still in remission. Please pray that he is, and that we can get over this bump in the road quickly.
Love,
Kim
Monday, May 9, 2005 12:13 AM CDT Hi Everyone,
We are all settled in here at CHOC. We didnt get to our bed until 4:30 am (Sat night/Sun morning), but seem to have our sleep schedule back on track.
Andrew really feels miserable. His bones hurt a lot and he is having really high fevers. Today they are doing some x-rays of his bones, to rule out any issues with necrosis (bone death).
Since leukemia is cancer of the blood, which is produced in the marrow (inner) of the bones, much of the chemotherapy strips out his bone marrow. It also cuts of blood supply to the bones. This can cause the bones to die (necrosis). Please pray that this is not happening to Andrew (it is very serious). We hope it is just pain from the process, and nothing permanent.
Also, please pray that he can break his fever.
Thanks for all of the warm wishes via email and guestbook....it gets lonely here in the hospital and we are comforted knowing that our family and friends are praying for us.
Love,
Kim
Sunday, May 8, 2005 1:30 AM CDT Well, What would be the best way to celebrate motherhood?? How about in the hospital??
Yes, we are on our way to the ER, as Andrew has a fever. I guess it ensures that I will spend the whole day cuddling my first born (we usually lay in bed and snuggle in the hospital).
Please pray that his fever goes down quickly and is nothing that is harmful to him.
The real stinky thing, is we have to go through the ER, which usually takes a great big handful of hours.....so, I dont expect us to be anywhere comfortable until sunrise.
Can you tell I just want to crawl into my own bed?
Ok, this is what being a mother is, right? If I werent a mom, I could be doing something more fun, but wouldnt have my Pooper to do it with...so Ill take going to the hospital, thankful that I have my cutie.
And poor Andrew, he hasnt felt well for the past couple of weeks, so maybe we can talk them into some good pain meds for his bone pain.
Ill update soon.....
Thanks for your prayers!
Love,
Kim
Wednesday, May 4, 2005 4:44 PM CDT Hi Everyone,
We spent this past weekend in Big Bear, on a training ride for Doug with Team in Training.
I cant believe there is only one month left before the big event in Tahoe (Im sure the cyclists cant believe it either!!) I am so excited, for many reasons;
We will get to meet (and stay a couple of extra days) with Spencer and his family. His mom and I have stayed close for the past year and a half, as we watched our boys battle t-cell leukemia. Spencer took a different route of treatment, as his relapse made it necessary for him to have a cord blood transplant....and, drum roll please.....TODAY is his ONE YEAR transplant birthday!! I know many of you prayed for Spencer during very dark days, please go and send him a note of congratulations, thanking God for the healing HE has done in Spencer: www.caringbridge.org/ca/spencerrocket.
OK, on to the other reasons I am excited for Tahoe. I cant really describe the feeling, of seeing thousands of cyclists streaming down the road, knowing that each one of them has raised funds (and awareness) to help find a cure for blood cancers. As a mom, I have to trust that God will heal Andrew...and I know He does this through the many people that donate and ride, supporting the amazing research efforts of the Leukemia and Lymphoma Society. I cant wait to be there, to see the riders, meet survivors, and be reminded of the hope we have for healing on this earth.
I am looking forward to watching all the cyclists from our local team, as they cycle 100 miles around Lake Tahoe...accomplishing an amazing personal goal.
I will be sad this year too.....sad when I think of the Tahoe event last year. Andrew was so sick during that ride. He had spent most of the prior months in the hospital, often unable to walk, battling anorexia, so tiny and so sick. It hurts to think that my baby had to endure that. I am thankful that he is doing better now, and appreciate all of your prayers for continued healing and strength for Andrew.
I will also be sad, as a little girl that inspired many....a leukemia survivor that handed out PBnJ sandwiches to the riders....will not be there. Kailie found out she had relapsed just after the Tahoe ride last June, and went to be with Jesus in August. You can visit her website, Im sure her parents would love a note of support; www.caringbridge.org/page/kares4kailie
If you would like to support Doug on his ride, it is not too late. There is a link at the bottom of this page. Thanks for helping us in our quest to make sure that we find a cure to blood cancers, ensuring that children like Andrew, Spencer and Gregory ( www.gregoryconklin.org) and the many others, dont have to suffer this battle in the future. And to help let moms and dads watch their children grow up, rather than having them taken too soon (aria, markus, tj, kailie and so many others....we do this for you!)
As for Andrew...he is remaining strong. He has had a lot of vomitting, tummy aches and bone pain this past week. Please pray that he feels better.
Also, in today's USA TODAY, there is front page article about kids with cancer. The primary focus is the story of Ashton....we have corresponded with Ashton and his mom before, as we both faced similar decisions about radiation (Ashton also was dx with t-cell ALL at the age of 2, and had radiation at 3). You can read it to understand some of what we pray for now....for God to protect Andrew's brain from the late term effects of his treatment.
I will put up some new pictures soon, some from Big Bear :)
Thanks for checking on Andrew, praying for him and encouraging us!!
Love,
Kim
Friday, April 29, 2005 0:39 AM CDT Hi Everyone,
Andrew has had a lot of aches and pains this week. I cant really complain, because it wasnt that long ago that we felt the pain of his diagnosis, or the struggles last Spring, and I must say that relative to some of the rough spots, he is doing great. But I do feel sad, that he suffers, and that in his 4.5 years, over 1/3 of his life has been with the pain of cancer and chemo.
Currently, he is having a lot of bone pain (leg and arm), as well as joint pain (fingers and feet). His tummy hurts a lot too. These are all side effects from his chemos. This is the first week of his chemo cycle (they are 28 day cycles), and he gets 4 different chemos this week....they all have their side effects, and this time around he is feeling a lot of them.
It makes me sad to see him cry, and tell me that he hurts, because there really isnt anything I can do to take the pain away. I know it is something he has endured for 21 months, and he has nearly 2 years left to go.
Even when his Grandma J called this evening(who he loves to talk to) , he told me he couldnt talk, because he hurt too much.
The Director of his school called mid way through his school day, as he told her his tummy felt like it was being cut with a knife. Poor thing.
Please pray that God would comfort him and protect him, as well as continue to heal him.
We thank you for the prayers for our friend Gregory, as he has really made MIRACULOUS strides....please keep praying, he is still critical with a long way to go...but clearly God is working. www.gregoryconklin.org
We appreciate all of your prayers. We love reading the guest book messages, and are comforted in knowing that you are with us in this battle, praying for Andrew.
Love,
Kim
Monday, April 25, 2005 0:07 AM CDT Hi Everyone,
We have had a busy week....it began with a flight up to Sacramento last Monday. Andrew and I woke before dawn to catch a plane up to the CA State Capital. I didnt tell him ahead of time, as I didnt want him to be too excited and lose sleep, I also didnt want him to ask, "how many more minutes until we go on the airplane?" a bazillion times.....so I surprised him when I woke him in the morning.
He really enjoyed the entire trip, from going through security, riding in the plane, meeting friends, visiting the capital.....it was a VERY busy (and tiring) day...but he was a trooper.
The lo-down on our trip....(Ill give you a *brief* bit of background, so you understand why we went up there....)
We want to get specialized license plates, that raise money for childhood cancer research. Before we can even begin that huge task, we must first change the laws, as currently, the state will not issue new specialized plates.
CA does have specialty plates....but a few years back, the democratic majority changed the laws. A pro-life group was moving forward with a plate, and rather than see them have a plate (and the $$ it would raise)..they changed the laws...so now nobody can have them.
One of our arguments...is that if a group is able to pre-sell the 7,500 plates required (which is no easy task)..then who is the legislature to quell freedom of speech?? We all have a right to free speech, and even if the lawmakers dont like the group, certain groups should not be silenced just because not everyone agrees with them.
So, planned parenthood has come against our current legislation (AB 206).
Now back to our trip.....we went up to speak with the Transportation Committe....to voice our support for AB206. This legislation is authored by Assemblyman Ray Haynes. It was co-authored by a Democratic Assemblyman Levine.
So, Myself, with a tired Andrew on my lap, and a wonderful woman named Robyn (who lost her son to neuroblastoma; we expressed our desire to have a license plate to raise funds and awareness for childhood cancer research. We do not get a lot of money from the government, or from mainstream organizations like the American Cancer Society. Pediatric cancers have been left to fend for themselves, and in the recent past organizations have joined together to work towards a cure. We would like to be able to help financially support such organizations, rather than depend on the government to provide adequate funding.
Sadly, and I do mean SADLY, Assemblyman Levine decided he would no longer back this bill. He does not want groups with a controversial message to get plates, so none of us should have them.
I have to say, this was very painful to hear. That someone would consider denying us this wonderful opportunity, because they might not like the message of some other groups. I dont care who wants a plate, if 7500 people want to come together for something, who is the government to silence them??
I think this is why people dislike politicians...because they are more worried about getting their financial backing from Planned Parenthood, than doing what could help many legitimate groups in raising funds.
Lucky for us, the democrats on the committee felt more comfortable abstaining from the vote, rather than voting against it. Assemblyman Haynes said that our presence made the difference, as people might not have felt comfortable turning us down, after we had made such a sincere plea for our children.
Later in the day, the Assemblyman's staff were able to negotiate with a couple of committee members, and the bill actually did pass committee!! This is wonderful, and it means we can now move forward to the next stage...(which will probably be a similar ordeal with the Senate Committee Hearing....) We will keep on fighting for this opportunity.
We had a great civics lesson....but the fun part of the trip was meeting some of the other families we have come to know through my online support group. A HUGE thank you to Nate and his dad Greg, for picking us up at the airport and hosting us throughout the day. Nate is a year older than Andrew, and the two of them had fun playing on the grass at the Capitol building, and feeding nuts to the squirrels (picture in photo section.) We met Kelsey, Faith and Colleen, who came down from the Tahoe area to show support. We also spent time with Robyn, who is a crusader for childhood cancer research in the Northern CA area (and beyond!!) Her son Keaton's absence was felt by me on this trip, as he was taken by cancer when he was only 5. He should have been there to play with the kids, to see the Governor's office, and to see what a great advocate his mom is.....this is why we need to continue to raise awareness and funds...so kids like Keaton can run and feed squirrels at the Capitol!
On to Andrew...he is doing great!! He looks so healthy and is getting stronger by the minute. He can climb up stairs going leg over leg...something that he has been working on for over a year, and is just now able to do. He has had a lot of nausea this week, as we have had to pull over to the side of the road a few times to let him throw up. It reminds me that he is still battling this, still taking his chemo and feeling a bit under the weather from it. Even when he is running around, smiling and laughing, I know he doesnt feel that great.....but he is such a brave kid!
Tomorrow (Monday) he will begin his week of steroids, he will also go to the clinic for his chemo. Please pray that the cancer continues to be effective, and that the side effects for Andrew are minimal.
AND...how can I forget??? We got his MRD results back, and his bone marrow was clear. Please pray that the chemo continues to clear out all the cancer!!
Thanks for your prayers and messages of support in the guestbook...this is a long road, and we are grateful for so many of you that continue to encourage us!!
Love,
Kim
Sunday, April 17, 2005 11:34 PM CDT Hi Everyone,
Sorry I have not updated in a while....
Last weekend, Grandpa and Grandma Sprague came out from Georgia, along with Aunt Jenny. We took some time to go down to San Diego, enjoying the zoo and the museums at Balboa Park. Everyone had a great time. I posted some pictures in the photo section.
Andrew is doing great. We got the results of his neuropsych testing, and he continues to be strong in all areas. We will test him each year, so that we can monitor any possible side effects that may occur. (cognitive effects usually dont show up until a few years after treatment has ended.) We are thanking God that Andrew's brain is functioning so well, and we pray that God would continue to keep His hands of healing and protection on Andrew.
Tomorrow, Andrew and I are going to Sacramento. I have been working to get a law changed, in order to raise money for childhood cancer research through specialty license plates. We will meet with some of our CA State Assemblymen to share the need for specialized plates in order to help raise money towards a cure.
Speaking of finding a cure, Doug has been training hard on his bicycle, preparing for his 100 mile ride around Lake Tahoe. The ride is the first weekend in June, and he and the team are now up to 55 miles!! I have posted a picture of Andrew taken at last years ride. He had battled pretty hard the months prior to that picture....and at the time we were so thrilled that he was "looking good" again....but as you can see, he is looking MUCH better now. We are so grateful for the recent strides in treatment. There is hope for kids to beat cancer, only because of the committment of others to fund research. Thanks to all of you have donated to support Doug's ride. If you would like to contribute to this years ride, there is a link at the bottom of the page.
Please continue to pray for all of the children going through difficult and painful struggles, asking God to heal them from this awful disease.
Love,
Kim
Thursday, April 7, 2005 11:12 AM CDT Hi Everyone,
Andrew's journey in pictures will continue next week. He has gone through so much, and God has kept him strong. He still feels the effects of chemo, as today his tummy and his legs hurt. He has become so grown up and brave, It's hard to believe he is only 4.
Andrew had his annual neuropsych testing the past two weeks. This is to give us a "heads up" should he start to show cognitive weaknesses as a result of the chemo and radiation. We go back next week to discuss the results.
We are still awaiting word on his MRD testing. When Andrew has his spinals, they look at 100 cells, MRD looks at 10,000....giving us a more definitive assurance.
We are also in the midst of scheduling 2nd opinions for a look at Andrew's MRIs. This will help us in making decisions re: future spinals.
Thank you for keeping Molly and her family in your prayers. Her dad was killed by a subway train on his way to work, and since then Molly's family has continued to go through struggles....Molly has been battling nosebleeds, and the doctors are trying to find the cause. Please encourage them with a note in their guestbook, letting them know you are praying Molly's Page
Andrew's friend Gregory has taken a turn for the worse. The poor thing had to celebrate his 8th birthday in the hospital, where he has spent his last 3 birthdays. What should have been a joyful day instead was marked with a lung collapsing, new infections, and more. He is now on a ventilator and his organs are not holding up. There are new pictures on his website, if you look at a special link, you will see pictures of his body, that has been ravaged by the infection, we hope the pictures help you to pray specifically for Gregory's healingGregory's Page
Andrew's Grandma and Grandpa from Georgia are coming this weekend, along with Aunt Jenny. We are hoping to visit the San Diego Zoo! Im sure we will have a good time. Grandma has not seen Christine since she was 5 mos. old, and Andrew since before he was diagnosed....so Im sure she will be surprised with how grown up they have become!
Enjoy your weekend,
Love,
Kim
Thursday, April 7, 2005 11:12 AM CDT Hi Everyone,
Andrew's journey in pictures will continue next week. He has gone through so much, and God has kept him strong. He still feels the effects of chemo, as today his tummy and his legs hurt. He has become so grown up and brave, It's hard to believe he is only 4.
Andrew had his annual neuropsych testing the past two weeks. This is to give us a "heads up" should he start to show cognitive weaknesses as a result of the chemo and radiation. We go back next week to discuss the results.
We are still awaiting word on his MRD testing. When Andrew has his spinals, they look at 100 cells, MRD looks at 10,000....giving us a more definitive assurance.
We are also in the midst of scheduling 2nd opinions for a look at Andrew's MRIs. This will help us in making decisions re: future spinals.
Thank you for keeping Molly and her family in your prayers. Her dad was killed by a subway train on his way to work, and since then Molly's family has continued to go through struggles....Molly has been battling nosebleeds, and the doctors are trying to find the cause. Please encourage them with a note in their guestbook, letting them know you are praying Molly's Page
Andrew's friend Gregory has taken a turn for the worse. The poor thing had to celebrate his 8th birthday in the hospital, where he has spent his last 3 birthdays. What should have been a joyful day instead was marked with a lung collapsing, new infections, and more. He is now on a ventilator and his organs are not holding up. There are new pictures on his website, if you look at a special link, you will see pictures of his body, that has been ravaged by the infection, we hope the pictures help you to pray specifically for Gregory's healingGregory's Page
Andrew's Grandma and Grandpa from Georgia are coming this weekend, along with Aunt Jenny. We are hoping to visit the San Diego Zoo! Im sure we will have a good time. Grandma has not seen Christine since she was 5 mos. old, and Andrew since before he was diagnosed....so Im sure she will be surprised with how grown up they have become!
Enjoy your weekend,
Love,
Kim
Wednesday, March 30, 2005 0:09 AM CST Hi Everyone,
Andrew is feeling better after yesterday's procedures. he has not thrown up today, and aside from bruises on his back, you would never know that he had a rough day yesterday and is pumped up with heavy chemo.
His spinal fluid came back clear...thank you! We should hear back in a couple of weeks about his MRD testing (which is a more sensitive test.)
I am continuing showing you some of Andrew's journey in pictures. I have his "Caillou" border on the page...doesnt he look like Caillou?? As you can see, his face changes quite quickly on treatment. The steroids cause his face to look bloated, and at other times he looks very thin as the chemo is nauseating and ruins his appetite. His hair comes and goes too.....
Andrew was singing during this photo shoot just before Christmas 2003.
At the park in late January 2004, not feeling that great.
This is at the hospital, getting chemo in early March 2004. Amazing that this was just over a year ago!
In March 2004, Andrew began radiation. Here he is with the big guns. His head is bolted to the table under that tight mask, so tight it put mesh shaped bruises on his chin. Usually kids under 8 are sedated. The doctors were amazed that 3 year old Andrew could lay perfectly still, with that mask mushing down his face, while machines rotated around him....he didnt make a sound...such a brave boy!
These pictures take us through his first eight months of treatment. He has come a long way, and still has so much left to go!
Thank you for being there each step, praying for Andrew to be protected from side effects, for his treatment to heal him, for him to feel ok. We are grateful that he has not travelled this path alone.
Please lift up the Guarton family, Molly's Page
Molly is battling leukemia, and this morning, her father was tragically killed. He was hit by a subway on his way to work. Please send them a note of support and let them know you are praying for them.
Thanks,
love,
Kim
Sunday, March 27, 2005 11:24 PM CST MONDAY UPDATE -
ANDREW HAD HIS SPINAL AND BONE MARROW ASPIRATE TODAY. NORMALLY, HE IS VERY BRAVE, BUT HE WAS ANXIOUS AND UPSET ALL MORNING, NOT WANTING TO HAVE IT DONE. MARY, OUR NURSE PRACTITIONER, THAT DOES THE PROCEDURES EVEN COMMENTED THAT 'THIS IS NOT THE ANDREW I KNOW.'
LAST TIME HE HAD THESE DONE, IT WAS SOMEONE OTHER THAN MARY DOING IT, AND HE DID NOT GET ALL OF HIS MEDS TO MAKE HIM WOOZY. THE RESULT, WAS A BIT OF TRAUMA...WELL, KIND OF A LOT OF PAIN AND CRYING.
I THINK THAT IS WHY HE WAS SCARED TODAY. THEY GAVE HIM HIS MEDS TO CALM HIM, BUT HE STILL FOUGHT IT, CRYING OUT THROUGH THE PROCEDURES.
HE SLEPT LONGER THAN USUAL AFTERWARDS, AND THREW UP A NUMBER OF TIMES IN THE HOURS FOLLOWING.
THANKFULLY, BY LATE AFTERNOON HE WAS FEELING BETTER, AND WE WENT TO THE PARK TO PLAY WITH FRIENDS.
THANKS FOR YOUR PRAYERS....I AM HOPING THIS DOES NOT SET A PATTERN, AND THAT ANDREW DOES NOT EXPERIENCE TRAUMA WITH THESE SPINALS AND BONE MARROW TESTS.
WE SHOULD HAVE THE RESULTS OF THE SPINAL TOMORROW, AND THE MRD TESTING WILL BE A FEW WEEKS. BOTH CHECK FOR RELAPSE...SO PLEASE PRAY THEY ARE CLEAR.
OUR FRIEND GREGORY IS HANGING TOUGH. HIS KIDNEYS HAVE BEEN IMPROVING, HOWEVER HE IS STILL IN TOO MUCH PAIN TO BE WEANED FROM HIS SEDATIVES. HIS FAMILY REALLY IS NOT SURE ABOUT THE LEVEL OF DESTRUCTION TO HIS FLESH, CIRCULATION, MUSCLES, BONES ETC. THEY BELIEVE THESE COULD BE WHAT IS CAUSING HIM SO MUCH PAIN. PLEASE PRAY THAT HIS CIRCULATION CAN INCREASE AND THAT THESE AREAS ARE RESTORED.
LOVE,
KIM
Happy Easter Everyone,
I hope you had a wonderful day, celebrating Christ's resurrection and the hope we have in Him.
I have been thinking about all that Andrew has gone through, and specifically the physical changes that he has endured. He has had many different 'looks' over the past year and a half, and I thought I would chronicle some of them with pictures on his webpage.
I may need to do this in a few installments, as I dont want to overwhelm the website with too many graphics....
here goes....
Andrew was diagnosed August 6th, 2003 at the age of 2 years, 10 months. Here are some of the early pictures;
This picture was taken his first week in the hospital. He had received his central line, and was propped up with all the toys his friends had brought for him. It's a blurry picture, but you can still see his thick, blonde hair.
This was just a couple of months later, his 3rd birthday in October. His face was very puffy in August and September from the steroids, by this point it was starting to come down, but still looking more swollen than before he was sick. We cut his hair short, as it was starting to fall out, you can see his scalp and how it was thinning. This is a Rollie Pollie Ollie cake that he helped me make at the last minute. I can see the green hospital bracelet on his arm, and I remember that we really didnt expect to have a birthday celebration, but he got out of the hospital and was so excited about his "party"....except that I hadnt planned one! His immune level was very low, but I felt so bad for him, that I baked this cake, called a few friends at the last minute, and we met at the park to celebrate Andrew's 3rd birthday!
A month later, and the shape of Andrew's face is back to normal. His hair is gone now, and he looks very tired in this picture. Look at baby Christine! She is almost one here, and boy was she a special blessing to have on this journey, a constant companion to Andrew and source of joy for us all. It is great to have her in our family, for many reasons, but she certainly has been a terrific diversion, keeping us from focusing on Andrew and his cancer too much.
I will add more of the story in the next journal entry, in the mean time...I have some new pictures that we took today at church, celebrating Easter.
Tomorrow, Andrew goes in for his heavy duty chemo. He will start back on his daily chemo at home (mercaptopurine, otherwise known as 6mp), he will begin steroids (YIKES!), will get an infusion of vincristine (joint pain), a spinal tap with methotrexate, and a bone marrow aspirate to check for traces of leukemia. We appreciate your prayers!
Love,
Kim
Friday, March 25, 2005 11:09 PM CST Hi Everyone,
Andrew went to the clinic today, again he was amazing and let them put that huge needle in his port without even flinching. The nurse asked, "Should we count to three?" and he said, "No, put it in, 1-2-3!" He apparently doesnt have time to be bothered with that process!
We got his lab results this afternoon, and his immune level has raised enough to begin his treatment again. This is comforting, as it is always a bit nerve wracking to have him *chemo-free*
On a side note, I am often asked why he needs to keep getting chemo if he is in remission...so, here are the basics;
When Andrew was diagnosed, over 90 f the cells in his blood were cancerous. Usually you have red blood cells, white blood cells, platelettes and more....he had very little of those, and instead the little "blasts" (leukemic cells are baby white blood cells, or blasts, that replicate over and over, crowding out the other parts of the blood.) so these blasts had overtaken his blood.
Leukemia is put into remission very quickly, usually within the first week. Unlike a tumor, which has to be shrunk or removed for the cancer to be in remission, the leukemic cells are wiped out rather quickly. However, this remission is merely 'clinical' as we know that there are still 'blasts' circulating.
The way the doctors check for leukemia, is to take some of the blood and look at it under a microscope. They are able to look at about 100 cells...so, they cant look at all the cells, but are just looking at a small sample. We know that there are still leukemic cells in his blood, so we need to keep up the treatment.
The MRD testing that we recently added to Andrew's protocol, is able to look at 10,000 cells at a time, rather than 100. It gives us more reassurance that he is in remission, however, even with that, history of leukemia tells us that there are still 'blasts' running through his body...which is why he needs to take chemo, every day, for the next 2 years.
So Monday he will resume his oral chemos at home, he will begin his week of steroids (watch out!!), and he will get an infusion of vincristine (joint pain and weakness), a spinal of methotrexate, and a bone marrow aspirate. The spinal (which is like an epidural) will administer his chemo, and also check his spinal fluid for blasts. The bone marrow aspirate (the coring needle that will take out bone and marrow) will be sent away for MRD testing, to get a better look and assure us that he is in clinical remission.
Andrew is very excited about Easter! He knows that Jesus dies on the cross for our sins, and that the Easter Bunny will bring us some treats to celebrate.
Usually, Andrew cant have dairy in the evening....he also cant have anything to eat after dinner. These restrictions are because his chemo cant be taken with any food and dairy inhibits the effectiveness. During this past week, off chemo, Andrew has enjoyed lots of dairy and late night treats, he really feels like he is living it up!
Tomorrow we will go and support our Team In Training cyclists, who are raising money for the Leukemia and Lymphoma Society. The last time they rode (40 miles) Doug seemed to struggle. He hasnt had much chance to ride or train, so he is going to work hard to get back in shape for the Tahoe ride in June. If you would like to support Doug, I have a link at the bottom of this page, that will take you to his fundraising site.
May you all have a blessed Easter, remembering the hope we have in Jesus!
Thanks for checking on Andrew,
Love,
Kim
Thursday, March 24, 2005 0:51 AM CST Hi Everyone,
Thanks for all of your prayers. We are now home, Andrew is feeling better.
Initially, the resident told us that he had pneumonia...but then our oncologist said Andrew's lungs were clear. It could be an error on the residents part, but Ill chalk it up to the many prayers you all said for Andrew. Thank You!!
Andrew's counts ended up going very low, so they have stopped his chemo for the time being. We will go back on Friday for more labs, and if things look ok, we will have his spinal and chemos on Monday.
An update on little Gregory, he was moved out of the Pediatric Intensive Care and up to the Oncology Intensive Care Unit. This is a big step, although he is still critical, and in need of constant prayers. His right leg is looking so much better (some purple), but his left leg is still needing a miracle, with his toes being completely black due to lack of circulation.
We appreciate the care you show by keeping us all lifted in prayers.
Love,
Kim
Monday, March 21, 2005 2:13 PM CST **MONDAY EVENING, ANDREW WAS ADMITTED TO THE HOSPITAL. HE HAS A FEVER THAT WONT GO AWAY WITH TYLENOL, AND THEY HAVE STARTED HIM ON MORE ANTIOBIOTICS WHILE THEY DO SOME TESTS. PLEASE KEEP HIM IN YOUR PRAYERS, THANKS**
Hi Everyone,
Well, it is a countdown to Easter, and the kids went to see the Easter Bunny today. Christine is always friendly from afar with characters, but crys when they get near her. Today was no exception, as she began to cry when placed on his lap, but she soon warmed up (a bit), at least enough to get a picture without tears (in photo album.)
The kids are excited about the Easter Bunny coming and leaving eggs. The story, as we tell it here, is that when Jesus died for our sins, and rose from the dead, everyone was so happy, even the animals rejoiced. All the chicks had eggs and all the bunnys came out to celebrate. So, to remind us of Jesus rising, giving us hope in eternal life, the Easter Bunny brings everyone baskets of eggs.
Both kids still have a cough, and are on meds, we are praying that things clear up for them quickly.
Andrew will be going in and having a spinal tap and chemo on Wednesday. We have decided to go ahead with this, but are still contemplating stopping future spinals, as they are well documented to cause neurological and cognitive damage when given to a brain that has received radiation (as Andrew's has). Andrew will also have a bone marrow aspirate, where they stick the coring needle deep into his back to take out marrow from the bone. He is awake, although groggy, but does feel it and does scream and cry. Last time, it was very traumatic, as the doctor (God bless her!) had to do a few tries, resulting in a lot of pain for Andrew.
Thanks for checking in on us, and please continue to pray for our friend Gregory, as he is still critical and in need of a miracle. Gregory's Page
We have new photos in the album, of today's visit with the Easter Bunny and some pictures from our trip to Disneyland.
Love,
Kim
Monday, March 21, 2005 2:13 PM CST Hi Everyone,
Well, it is a countdown to Easter, and the kids went to see the Easter Bunny today. Christine is always friendly from afar with characters, but crys when they get near her. Today was no exception, as she began to cry when placed on his lap, but she soon warmed up (a bit), at least enough to get a picture without tears (in photo album.)
The kids are excited about the Easter Bunny coming and leaving eggs. The story, as we tell it here, is that when Jesus died for our sins, and rose from the dead, everyone was so happy, even the animals rejoiced. All the chicks had eggs and all the bunnys came out to celebrate. So, to remind us of Jesus rising, giving us hope in eternal life, the Easter Bunny brings everyone baskets of eggs.
Both kids still have a cough, and are on meds, we are praying that things clear up for them quickly.
Andrew will be going in and having a spinal tap and chemo on Wednesday. We have decided to go ahead with this, but are still contemplating stopping future spinals, as they are well documented to cause neurological and cognitive damage when given to a brain that has received radiation (as Andrew's has). Andrew will also have a bone marrow aspirate, where they stick the coring needle deep into his back to take out marrow from the bone. He is awake, although groggy, but does feel it and does scream and cry. Last time, it was very traumatic, as the doctor (God bless her!) had to do a few tries, resulting in a lot of pain for Andrew.
Thanks for checking in on us, and please continue to pray for our friend Gregory, as he is still critical and in need of a miracle.
We have new photos in the album, of today's visit with the Easter Bunny and some pictures from our trip to Disneyland.
Love,
Kim
Friday, March 18, 2005 10:17 AM CST Hi Everyone,
Well the colds in this family just wont go away. Christine's cough has gotten worse, and despite antibiotics a week or so ago, she now has inflammation in the lungs. The doctor took x-rays and so now she is on more antibiotics. She also has a severe diaper rash (bleeding) and the antibiotics can make that worse. Please pray that she can get over this and not have her bottom get worse.
Andrew's cough is sounding more and more like Christine's, so I have a call in to the doctor, hoping to take him in today as well.
We are otherwise doing fine. Moving all of our furniture back into place and getting settled.
Andrew and Christine are excited to see the Easter Bunny, so we will try to visit him in the next few days....Christine loves characters from afar, but still freaks out if they get too close, so Im betting we will have another Easter picture with her in tears....one more thing to tease her with when she gets older :)
Andrew is scheduled for his infusions as well as spinal chemo on Wednesday. I still havent completely decided if he will get it. Our insurance denied the 2nd opinion from the specialist re: his MRI's...so that will be another out-of-pocket expense. Im hoping the info will show that Andrew is fine, and I am also hoping it gives us confirmation about moving forward or halting future spinals. Please continue to pray for our decisions in this area, as well as healing for Andrew.
Thanks,
Love,
Kim
Wednesday, March 16, 2005 10:48 AM CST Hi Everyone,
Thanks for checking in and keeping us in your prayers. We have returned from our time on the road (we were out while they replaced our floors). I can tell you that the novelty of our vacation wore off within the first week, and then it seemed to be a science experiment gone bad. Im sure you all have heard of studies where they cram animals into a small, confined space and watch how they react ...well, that is how it felt with 5 of us in a tiny hotel room.
Andrew and Christine both have coughs, with Christine's being worse than Andrew's. Im praying that they get over it soon, as it sounds horrible and has lingered on for some time.
I was looking over Andrew's journal history, and noticed that a year ago we were in the midst of his radiation. That was a very scary time, and the months that followed were hard on Andrew. It's amazing to look at him now and see how well he is doing. Every day people remark about how good and strong he looks. He has definitely come a long way. Many people are surprised to find out that he still takes chemo every day (he is on 5 different chemos). He does still feel nauseated to some degree, his appetite has not completely returned, he does have energy but tires and gets sore legs easily, but overall he is doing great! Andrew really enjoys school, church, swimming, gymnastics, and hanging out with his friends. He was not able to do these things last year at this time, and we are so thankful that he is able to enjoy life. We know that this progress is the result of many faithful prayers, and God's work in healing Andrew.
We have some friends that are desperate for prayers; Gregory had been doing so well, but had sepsis. Some of you remember that when Andrew gets a fever we immediately go to the hospital. The reason is because a bacterial infection could spread quickly, causing his body to go 'septic', which is almost always fatal. This is what happened to Gregory recently, and the damage to his limbs and organs is unknown at this time. Please drop him a not and let him know you are praying for him Gregory's Page
Victor is preparing for a transplant right now. He was on the same treatment plan as Andrew, and recently relapsed. Transplant is not easy and his family is asking for prayers Victor's Page
John is recovering from a transplant. He is doing well so far and we are all praying that his cancer (neuroblastoma) is gone for good. John's Page
We hope you all have a very happy St. Patrick's Day. Thanks for your continued support!
Love,
Kim
Thursday, March 10, 2005 10:25 PM CST Hi Everyone,
We are still alive....living like nomads, but making the best of it.
The builder of our home is replacing our flooring (it was damaged, and they are FINALLY tearing it out and putting in new stuff.) We need to be out of the house, so decided to take in some sights; Balboa Park museums, San Diego Zoo and Disneyland....
After a week away from home (and away from a computer), I have gotten a chance to update Andrew's webpage.
Andrew is doing well. He came down with an ear infection last week, which is still bothering him a little bit, but is getting better.
He goes in to complete his neuropsych testing next week. We also have found a radiooncologist that is willing to give us a second opinion on his MRI's. She is well versed on the effects of intrathecal chemotherapy (that injected into the spine) and radiation on the brain. We hope to send her his MRI's soon.
We were hoping to return home later this week, but when I went to the house yesterday, they had not even begun to lay the new floor....it seems the builder did not hire installers!! Yes, we are terribly annoyed at the delay, especially since we have finished the tourist sights and have now returned to our "normal routine" albeit from the home base of a local hotel.
Thanks for checking on Andrew and for keeping him in your prayer.
Love,
Kim
Tuesday, March 1, 2005 1:09 AM CST Hi Everyone,
Andrew is in the throws of steroid week, but overall doing well. He is such an adorable, sweetie 95 f the time, I try to look away the other 5
He will begin neuropsych testing today. It involves playing games and taking tests with the psychologist, something that Andrew should enjoy.
Doug and I feel like we have a cold, but hopefully it will be gone soon and the kids wont get it. Andrew's immune level was actually quite low last week (ANC=640) so please pray that he doesnt catch anything from us.
Thanks for checking in and for the sweet messages in his guestbook. I know one day when he is older, Andrew will really be amazed at all of the people that were out there rooting him on.
Love,
Kim
Friday, February 25, 2005 10:08 AM CST Hi Everyone,
We received Andrew's MRI results back, however they were pretty vague and unclear. Our oncologist is going to have them reviewed by a radiologist that is more familiar with the types of treatments that Andrew has received and see if we cant get more of a definitive explanation.
Usually, if someone is not showing any outward sides of neurological problems, it is a good sign that everything is fine. Unfortunately, the types of problems Andrew could have would not likely show up for years, and at that time, it would be too late. We feel like the decisions we make now will matter down the road, and so want to make sure we are gathering the most accurate information.
Please pray that God guides us during these processes, giving us clear information, so that we can make the best choices for Andrew.
Andrew will go for his neuropysch testing on Tuesday. This is 'fun' testing with the psychologist.
Last night I attended a seminar at the hospital. It was to discuss the possible long term psychological effects that cancer survivors may face. The first portion of the night was a power point presentation with the statistics for secondary physical problems in cancer survivors; secondary cancers, cardiac problems, occular problems, respiratory problems, cognitive problems, orthopaedic problems, it was a long list...very overwhelming. When Andrew was diagnosed, they brought us to a conference room to discuss his treatment options and the side effects. At that time, they also went over this long list....I had to leave in the middle of that meeting, because the possible damage from the chemo/radiation is just too upsetting. But last night, front row in a seminar, I had to listen to it all.
In the past, kids with leukemia had a slim chance of survival. The reason they are surviving in larger numbers now, is because they have a very aggressive treatment plan (longer than any other cancer; nearly 4 years of chemo!) They are starting to see the data on survivors who have received this treatment, and they are seeing a number of serious problems. It is a reminder to me that I need to constantly pray for protection for Andrew. It is a gift that he is receiving such life saving treatment, but there is a price that is being paid.
It is very sad to see him today, looking so healthy and normal, and knowing all that may lie ahead of him.
He feels pretty good right now. His legs hurt and so does his tummy, but otherwise he is doing fine. He had his chemo infusions on Wednesday, and he did well, once again, with having his port accessed.
Thanks again for all of your prayers,
Love,
Kim
Sunday, February 20, 2005 10:03 PM CST Hi Dear Friends,
Well, as the graphics on this page imply, it has been a wet and rainy weekend.
Andrew is doing pretty good. He has been nauseated, throwing up each morning a few times, but seems to feel better as the day goes on.
His latest interest is in making "projects". He will decide he wants to make something (ie. a car wash, a bat, a card for a friend, a rocket, etc.) and then he will do a great job of coming up with a list of supplies (scissors, glue, paper, straws, popsicle sticks, etc.) With a little help, but mostly on his own, he has made some really great little crafts.
His little brain seems to be doing just great! We are saying lots of prayers that the MRI results this Thursday will also show us that things are holding up in his head. The last two showed some "delays in myelination" the myelination is the fatty covering of the neurons, which is important for neural transmission and overall protection of the neurons. We are assuming the damage is from the chemo, as the MRI was taken before his radiation. Now that he has been radiated, and is getting continual chemo to the brain (via the spinals)..we are really praying that God has not only healed this problem, but kept Andrew's brain protected from the continued treatments.
We really appreciate all of your prayers!
We also thank you for the support we have received for Doug and his bike ride, raising money for the Leukemia and Lymphoma Society. Science is moving forward, and we hope that our efforts save many lives, and find not only cures, but treatments that dont do as much damage to these kids.
No donation is too small, and I want to encourage you to give up something for a week, or a month. The kids going through this long treatment have to give up so much....please give up your Starbucks coffee, movie night,...for just a short period of time, and donate that money to help save lives. The link is at the bottom of the page.
Love,
Kim
Friday, February 18, 2005 7:18 PM CST Hi Everyone,
Andrew isnt feeling that great today. He has been vomitting and complaining that his legs hurt. Days like this remind me, that he is taking chemo every day. I've gotten so used to him feeling and looking better, that sometimes I forget that his body is still going through a battle.
Speaking of battle's, John Taggart is having some tough times, please pray for him! You can visit his website at www.caringbridge.org/ca/johntaggart
Andrew goes to clinic on Wednesday for his monthly IV of chemo (vincristine, the one that causes leg pains). He will also begin his steroids and take his methotrexate (oral pills), along with the 6mp (oral pill) he takes every night. Please pray that he stays strong, and that the meds continue to kill of the leukemia.
Thursday we have an appointment with the neurologist, and he will (hopefully!) be able to give me more information about Andrew's brain and how it is holding up to the treatment. We are praying that the prior issues have healed themselves and that everything looks good.
We hope you enjoy this weekend, we are expecting a lot of rain, so will probably stay home and cuddle up a lot.
Love,
Kim
Wednesday, February 16, 2005 10:22 PM CST Hi Everyone,
Thank you so much for your continued prayers for Andrew!
Yesterday, Andrew had his port "accessed" (they put in a needle and it is hooked up to an IV). I can not imagine the accessing going any better than it did. First, they place this hooked needle up to his chest, and then they count to three and push it into the port. Andrew did not flinch, had no anxiety, it really was miraculous!
He did well with his MRI, we should get the results next Thursday at our visit with the neurologist.
We got his lab work back today, and his counts are a little out of wack, perhaps he is trying to fight off something. He also is having watery stools that he cant control :0 Hopefully this will all clear up.
We hope you all had a wonderful Valentines Day....we feel very loved by the support that you show us, and pray that God blesses all of you.
Love,
Kim
PS. I will keep the link for Doug's fundraising ride at the bottom of the page. Thank you so much for donating.
Monday, February 14, 2005 5:59 PM CST Happy Valentines Day!!
Lots of love to all of you who pray for Andrew and have shown us so much support and encouragement.
Andrew is doing well. Tomorrow is a big day, as he will have his "port" accessed for the first time. The port is the titanium 'central line' that replaced his 'tubes' (broviac). It is under the skin, so to get his medication they need to poke the needle through the skin and hook it into the port (the needle is very thick and 'hook' shaped.) The needle then stays in while he gets his treatment. The kids dont complain much about the needle once it is in, but GETTING it inserted can be pretty painful. Please pray that this goes well....
By the way, the reason for the port being 'accessed' is that he is having an MRI of his brain tomorrow. Two previous MRIs showed some abnormalities, so we want to check again and see how things are looking. Please pray that everything looks good. His chemo continues to assault the brain, and we are praying that God has kept Andrew protected.
The MRI will be done under general anesthesia, so please also pray that he is kept safe during the process and that he feels ok afterwards. He has a tendency to vomit quite a bit after having anesthesia.
Andrew has a little Valentines Day gig at school tomorrow. We are bringing "red" fruit salad (think strawberries, watermelon, rasberries, etc.) Since Andrew is getting his MRI after school, he will not be able to eat anything during the celebration. I feel sad for him. I know it isnt as bad as having cancer or getting back pokes, but sometimes these little things remind me that his life isnt the same as every other 4 year old.
Speaking of little kids going through more than the imaginable, please keep Victor and John in your prayers. These two friends are facing very tough times. I know their families would be encouraged to hear from you, letting them know that there are prayers being sent for their healing and comfort.
Doug and I would like to say that we are humbled and grateful for the generous donations we have received towards Doug's ride with the Leukemia and Lymphoma Society. Science is moving us closer to a cure, for kids like Andrew, John and Victor, thanks for being a part of it! I will leave the link at the bottom of this page, and thank each of you for donating.
Love,
Kim
Saturday, February 12, 2005 11:09 PM CST Hi Everyone,
Please pray for Christine, as she has a fever. We are asking God to protect Andrew, as a fever would get us a trip to the hospital.
Thank you for your faithfulness in praying. We received good new's about Andrew's teeth and endocrine functioning this week.
Andrew had a visit with the dentist, and the hygienist remarked that Andrew's teeth looked fantastic and she couldnt believe that he hadnt brushed his teeth in over a year. There also did not appear to be surface damage from his nightly chemo. We had a tough time getting those little x-ray tabs into his mouth, but from the pictures we did get, things look fine so far. We could not see any deformations of his permanent teeth. Please continue to pray, as Andrew is still taking chemo every night (the one in particular that can erode the teeth), and the permanent teeth and roots wont be fully developed for a few more years (and that is when we will have a better picture of any possible damage from the radiation.) Also, he has an area between two teeth that could be the start of decay, he was told to take extra care in flossing. Unfortunately, Andrew is not allowed to floss (risk of infection), so please ask God to keep his teeth healthy, as He has done so far.
The Endocrinologist got back to me on Andrew's labs. He said everything looks good. We will continue to monitor this area (as again, problems usually arise down the road, if at all)...but we are thanking God for keeping Andrew's hormonal system in good condition thus far.
Andrew said something so sweet today, that I wanted to share it with all of you. He has a "brother and sister" in Colombia. Actually, we have a boy and girl that we adopted through World Vision, and we selected Colombia, since Doug was born there. I must have remarked to Andrew (probably in one of his moments of fighting over a toy with Christine) that his brother and sister in Colombia did not have toys. This was earlier in the week, and tonight, he came up to me with a bag of his favorite toys. He told me he wants to give them to his brother and sister, so they can play and have fun. He had a nice variety of things, and is now trying to figure out with Doug, how we can get them to the kids.
We are grateful for all of your prayers, and ask you to please lift up some friends; John Taggart
a friend with neuroblastoma, who is going through a stem cell transplant (a little different than the bone marrow and cord blood transplants that the leukemia kids get, but dangerous and very critical all the same).
Also, we are so sad to say that our friend Victor relapsed this weekend. He is on the same treatment plan as Andrew, just a few months ahead of Andrew. We feel so heartbroken for his family, and it is scary to us too, as it reminds us that we are still in a battle. Please ask God to bring miraculous healing to both boys and comfort their families.
And, these are the very reasons that we continue to raise funds for the Leukemia and Lymphoma Society. There is no sure cure, these kids are fragile, and those that survive can have a life of very serious (and life threatening) side effects. We want to see the day when children dont get cancer anymore.
We are humbled by the generous response we have already received. Anyone interested in donating, can click on the link at the bottom of this page. We appreciate your caring and support.
Thanks for your prayers,
Love,
Kim
Tuesday, February 8, 2005 11:26 PM CST Hi Everyone,
There are new pictures in the photo section, but I havent been able to size them (dont have the right software..long story), but hope to do so soon. They include pictures of Andrew taking his first shower (in a year and a half!) and also of the kids with their favorite group "Hi-5".
Andrew is doing well, and as soon as his sutures are all closed, he can submerge himself in the bath and swimming pool - Yeah! That should be very soon.
Tomorrow, Andrew will be going to the dentist for the first time. Im a little nervous, as during his intensive chemo, he was not permitted to brush his teeth (risk of infection). He could have used a mouthwash, but hasnt figured out how to spit it out yet...so that didnt get done very often. Some of the chemo's erode the enamel on the teeth, and also, the chemo and radiation reduce the amount of saliva, both making cavities more likely. Im really hoping he didnt develop any cavities. They will also take x-rays, and I am hoping that his roots look good. The radiation can cause the roots to stop growing, and also cause deformed (or non-existant) permanent teeth. I appreciate all of your prayers on these matters.
It is also time for the Sprague family to beg for money. Well, not really, but sometimes it seems like that is what we are doing. Doug is training to do America's Most Beautiful Ride again this year. It is 100 miles around Lake Tahoe, and the funds raised go to the Leukemia and Lymphoma Society.
Some charities that have "cancer" in their title, actually do very little to support childhood cancer research. The Leukemia and Lymphoma Society donates millions to research each year, and we are honored to be a part of their fundraising efforts.
Doug is not only riding, but is a team "mentor"...he will make an effort to support the new riders, by encouraging them to stay committed to their difficult training, and also in their fundraising efforts. It is not easy to ride 100 miles in a hilly environment like Tahoe. It is not easy to ask others for money...but it isnt easy to have a big fat needle in your back to core out part of your bone....or to feel like throwing up most of the time, ...you get the picture.
I can tell you, it is also not easy to meet new families just starting out on this journey. Last year, after Doug's Tahoe ride, another little girl in our neighborhood was diagnosed with leukemia. (there is nothing in our water....with 1 out of every 330 kids getting childhood cancer, she probably wont be the last in our neighborhood to be stricken with this disease.) We have met many other families this past year....and it really stinks! Some have already had to bury their children, and if there is anything we can do to help find a cure...we are committed to doing it, thus...the begging continues.
Please go to the link on the bottom of the page. It will take you to Doug's fundraising page. Last year, we raised over $8,000 (THANK YOU!!), and this year, our goal is $10,000. No donation is too small. I ask you to give up one of your personal treats this week (your Starbucks, fast food, movie night)...and donate.
We are grateful for all of your support....most especially your prayers.
Love,
Kim
Tuesday, February 8, 2005 11:26 PM CST Hi Everyone,
There are new pictures in the photo section, but I havent been able to size them (dont have the right software..long story), but hope to do so soon. They include pictures of Andrew taking his first shower (in a year and a half!) and also of the kids with their favorite group "Hi-5".
Andrew is doing well, and as soon as his sutures are all closed, he can submerge himself in the bath and swimming pool - Yeah! That should be very soon.
Tomorrow, Andrew will be going to the dentist for the first time. Im a little nervous, as during his intensive chemo, he was not permitted to brush his teeth (risk of infection). He could have used a mouthwash, but hasnt figured out how to spit it out yet...so that didnt get done very often. Some of the chemo's erode the enamel on the teeth, and also, the chemo and radiation reduce the amount of saliva, both making cavities more likely. Im really hoping he didnt develop any cavities. They will also take x-rays, and I am hoping that his roots look good. The radiation can cause the roots to stop growing, and also cause deformed (or non-existant) permanent teeth. I appreciate all of your prayers on these matters.
It is also time for the Sprague family to beg for money. Well, not really, but sometimes it seems like that is what we are doing. Doug is training to do America's Most Beautiful Ride again this year. It is 100 miles around Lake Tahoe, and the funds raised go to the Leukemia and Lymphoma Society.
Some charities that have "cancer" in their title, actually do very little to support childhood cancer research. The Leukemia and Lymphoma Society donates millions to research each year, and we are honored to be a part of their fundraising efforts.
Doug is not only riding, but is a team "mentor"...he will make an effort to support the new riders, by encouraging them to stay committed to their difficult training, and also in their fundraising efforts. It is not easy to ride 100 miles in a hilly environment like Tahoe. It is not easy to ask others for money...but it isnt easy to have a big fat needle in your back to core out part of your bone....or to feel like throwing up most of the time, ...you get the picture.
I can tell you, it is also not easy to meet new families just starting out on this journey. Last year, after Doug's Tahoe ride, another little girl in our neighborhood was diagnosed with leukemia. (there is nothing in our water....with 1 out of every 330 kids getting childhood cancer, she probably wont be the last in our neighborhood to be stricken with this disease.) We have met many other families this past year....and it really stinks! Some have already had to bury their children, and if there is anything we can do to help find a cure...we are committed to doing it, thus...the begging continues.
Please go to the link on the bottom of the page. It will take you to Doug's fundraising page. Last year, we raised over $8,000 (THANK YOU!!), and this year, our goal is $10,000. No donation is too small. I ask you to give up one of your personal treats this week (your Starbucks, fast food, movie night)...and donate.
We are grateful for all of your support....most especially your prayers.
Love,
Kim
Sunday, February 6, 2005 11:46 PM CST Hi Everyone,
Today marks 18 months that Andrew has been battling leukemia. We are thankful that it was a day of celebration. He is almost to his "half way" point, and I am confident that with all of your prayers, God will continue to give him victory in this fight.
Andrew had a spectacularly special day. Soon after being diagnosed, he was given a DVD sampler of a new kids group, Hi-5. (If you have not yet seen these entertainers, check out The Learning Channel and Discovery Kids). Andrew was hooked immediately, and soon I was scouring the internet for more DVDs. I also looked to see if they were touring, but they were new to the U.S. and I didnt see anything about plans to come here.
Fast forward...Friday night, I got a "whim" (there really are no coincidences in life) to see if Hi-5 had plans to venture to the U.S. I looked on the internet and..wouldnt ya know it, they would be in Long Beach on Sunday!
I hurried to get tickets, and then decided to see if I could contact their manager to see if Andrew could meet them.
Long story short....we saw the show today (fantastic!) and Andrew got to spend special time with the cast.
Thanks to Jamie and all of Hi-5 for treating Andrew with so much love and creating a wonderful memory.
I have pictures up in the photo section. I also posted a picture of Andrew in the shower.
Thanks for your continued love and prayers.
Love,
Kim
PS. Doug is participating in America's Most Beautiful Ride again...his 100 mile bike ride around Lake Tahoe, to raise money for the Leukemia and Lymphoma Society. If you would like to donate, the link to make online contributions is listed below. Thank You.
Friday, February 4, 2005 0:42 AM CST Hi Everyone,
Andrew had his bandages removed today. It was painful and the poor guy did a lot of crying, but they are off now and he is smiling! His chest looks great. The bruising is limited to the upper area where his old lines were connected, and that is healing. The port itself looks nicely situated against his ribs, and does not look sore or bruised.
He has 3 wounds with steri-strips, and then the old hole where his lines exited his chest (no strips, but still a big hole). The doctor said it was ok to take a shower, but to wait until all the wounds are closed before he sits in a bath or swims in a pool. Andrew cant fight off infections well, so we will wait until they heal, probably another week.
Andrew and Christine took a shower together tonight and had a lot of fun...until Christine pooped! Andrew started screaming and it was chaos....but isnt that what bath times with little kids are all about? He had a blast, and we are all looking forward to more water fun. I have some pictures of him enjoying the shower, I will try to get them up soon.
Lately, when I look at Andrew, he looks so much like he did before he was diagnosed. He has gained his weight back and his face is the same shape as it was before. His hair is getting thicker and lighter, looking more like it did prior to leukemia. It is great to see him looking healthy and feeling well.
We knew when we began this journey that it would be a long road. Thanks so much for continuing to check on Andrew, to pray for him and send us encouraging messages...we really appreciate it!
Love,
Kim
Tuesday, February 1, 2005 1:42 AM CST Hi Everyone,
Andrew is doing great, he really has most of his mobility back in his arm (which was sore from the surgery). He still has bruising on his chest, but does not seem to be in any pain anymore -thanks for the prayers. We are going in on Thursday to have his bandages removed.
I was able to attend a seminar last Thursday, re: the late term effects that Andrew may face.
I am grateful for the giant strides made in the fight against childhood leukemia. It really wasnt that long ago (10-20 years) that most kids didnt survive. Changes were made to treatment plans, different chemos added and increased, and the result is more kids are surviving.
We are really just now seeing how those survivors are doing, 10 years down the road. There seems to be a host of possible problems that could arise....
Doug and I have prayed for Andrew since before he was born. Each night, while I was pregnant, Doug read the Bible to Andrew. When we dedicated Andrew, we knew that it was like Abraham placing his son Isaac on the altar, turning him over to God and allowing God to use Isaac for His plan. (remember,, cancer is not in God's plan, it is part of a fallen world where we have illness and imperfections...but God can use it for His plan and bring good things from it.) All of Andrew's life, we have prayed for God to protect his heart, his mind, his body. We know that God heard our prayers.
Now, I feel like I must pray for Andrew so much...for his heart (as the chemo can cause heart damage), for his bones (as the drugs can cause brittle bone disease and other problems), for his eyes (which can get cataracts from the radiation), for his hearing (which he can lose from the radiation), for his head (which can get brain tumors from the radiation), for his blood (as we worry about relapse, or he is now at risk for other types of leukemia from the chemo) for his brain (which can have all kinds of learning and cognitive problems from the treatment), for his liver.....his feet, his hands.....sometimes the list of these potential problems seems overwhelming!
We know that God is more powerful than any physical ailment. We know God can protect Andrew. It is hard not to forget however, they we said a lot of prayers for Andrew, and he still got leukemia. God is not here to keep us youthful and healthy and bring us to perfection on earth.
We do pray that Andrew remains in remission and that God protects him from the possible side effects. We know God is able, and we pray that He will.
Thank you for praying with us, it eases our burden to know that so many others are begging God to give Andrew a long and healthy life, for His purpose.
Love,
Kim
Sunday, January 30, 2005 10:35 AM CST Dear Friends and Family,
Thank you for your care for Andrew. He is feeling much better. His chest and arm are still a bit sore, but they are getting better each day. We will go on Tuesday to the doctor, to have the dressing and sutures removed. Please pray that this process is as painless as possible for Andrew. Also, please pray that the incision sites are healing nicely with no infection.
Yesterday we attended the "Kick Off" for the new Team In Training season. Team in Training is the program that raises money for the Leukemia and Lymphoma Society through athletic events. It was amazing, as there were over 500 athletes, all of whom will be raising money to help fight blood cancers. They have the potential to raise over a million dollars this season!
Doug has signed up to do the 100 mile bike ride in Lake Tahoe again this year. Not only will he be raising money and doing the ride, but he is a "mentor" on the team, which means he is there to help encourage and support new riders.
Last Spring, Andrew was really struggling. When we were in Tahoe in June, he was very weak and sickly. He looks so much better now, and it reminds us how important research dollars are, as the recent strides in cancer treatment have truly given him a second chance at life.
This weekend, Christine celebrates her 2nd birthday. We cant believe our baby girl is already so grown up! As we think back over the past 2 years, we are thankful for Christine, she has been a blessing to all of us, making us smile even during tough times.
Thank you for your messages letting us know you are praying for Andrew, they are very encouraging to us.
Love,
Kim
Friday, January 28, 2005 0:16 AM CST FRIDAY NIGHT UPDATE**
Andrew is feeling better. He is no longer vomitting, in less pain, and can move his right arm some now. I expect him to get better each day. We are planning on going back to the doctor on Tuesday to have the stitches and dressing removed. Thanks for your prayers and words of encouragement. -Love, Kim
Thurs PM -
Thank you for your guestbook entries, phone messages and emails of love and support.
Andrew now has a new port! The surgery took longer than expected (2.5 hours, rather than the usual 1 hour), as the doctor said it was difficult to remove the broviac tubes. They ended up having to make extra incisions to go in and get the broviac (it was in deeper than they thought.)
The little guy is very sore, swollen and bruised. He even has bruised eyes and a bruised back, on top of a very bruised chest. He is in a lot of pain, and unfortunately, he is only on regular tylenol and ibuprofren. The doctor didnt want to give him anything else, I will have to change that if Andrew doesnt feel better in the morning.
He was vomitting for several hours, but seems to be keeping things down now.
Please pray that he heals quickly and feels better soon, and that his body remains infection free (with a low immune system it is harder for all of his incisions to heal.)
Im sure he will be running around again soon, and splashing and swimming before we know it!
We covet your prayers.
Love,
Kim
Tuesday, January 25, 2005 5:35 PM CST Hi Everyone,
Yesterday, Andrew went to the pediatric surgeon, for his pre-op appointment. The surgeon recognized that it might be difficult to put a port into Andrew's little body, and have it work correctly. There is a catheter that will run through his veins, and sometimes on little bodies, the catheter can kink up or get smashed against the wall of the vein, causing it to have problems working properly. Andrew had similar problems with his first 2 broviacs (the external lines he has now.) So the surgeon referred Andrew to have an ultrasound done of his venous (?) area, so that they can make sure the port is put in the most effective place.
I thought this was proactive of the surgeon, and an answer to prayer, helping ensure that the surgery goes smoothly.
Unfortunately, we spent all day bungling with our insurance, who at first approved the procedure, then decided they wanted us to have the test done somewhere else. This was particularly frustrating...as I was informed of the change of their decision by a call on my cell phone as I was driving to the appointment today. They didnt know where else I could have the test done, they only knew I couldnt have it done at CHOC.
We have run into this problem before. Andrew's insurance has him going to CHOC for the majority of his treatments, but every once in a while they want something done elsewhere. They fail to understand the team approach to his care......
Anyway, we just went and had it done at CHOC, I will have to fight this battle with our lame insurance later.
Please pray that Andrew's surgery goes smoothly. He goes in early Thursday morning. He should be able to go home the same day. He usually gets sick (vomitting) from the anesthesia, so please pray that those side effects are minimal.
Tomorrow, Andrew goes in for his monthly chemo. He will also have an EKG done, to check his heart. One of his chemo's has the potential to cause damage to the heart, so he get's an EKG every year to monitor things.
We appreciate your love and concern for Andrew and are grateful for your prayers for his health.
Love,
Kim
Sunday, January 23, 2005 3:45 PM CST Hi Everyone,
Andrew is getting stronger each day, and most recently we have noticed great improvement in his bike riding. Up until this past week, he really did not have the strength to peddle a full rotation. Thankfully, he has gotten over that hurdle and is now riding (with training wheels)and having lots of fun. Yesterday he discovered a new trick, "look ma, no hands!"....
With all of Andrew's progress, we dont want to miss an opportunity to thank God for getting us this far. We are grateful for his CONTINUED REMISSION, regaining his weight, improved appetite, ability to rejoin social/education activities, and overall feeling good.
We believe that these blessings are directly from God, and are a result of the many prayers that all of you have offered up for Andrew.
We know that his healing is a PROCESS (and unfortunately a longer process than I would like).
I am going to a seminar this week (Thurs. pm, after Andrew's surgery, so please pray that he is feeling well enough for me to attend this meeting), that will discuss the cognitive late effects of Andrew's treatment, and hopefully will give insight into helping work through future issues.
It is well recognized, that much of the treatment Andrew received has the potential to cause further problems down the road. One area of concern is cognitive effects. Specifically, short term memory loss, attention and concentration deficits, information processing, intelligence declines, and non-verbal memory delays.
We love Andrew, and know that his value to God is not based on his intellectual functioning....however, as parents, we want to do everything we can to preserve and support the gifts he has, and to help give him the tools to get through any hard ship that may arise as a result of his cancer treatment.
Many kids get frustrated in school and give up, or get into trouble, as a way of dealing with learning disabilities. It is also easy for teachers to label a child as lazy, disinterested or rebellious, when in reality the child is just frustrated by difficulty in the classroom. To try to avoid any of these problems, we want to be proactive, and find the best ways to work with Andrew to give him the best opportunity.
These possible issues can show up years (often 5-10) down the road. As of now, Andrew is doing great, and showing no signs of problems.
As Doug and I do our best, learning about the best ways to support Andrew, we ask that you would continue in prayer, asking God to protect Andrew's brain from any of these side effects.
Please know, that our concerns for Andrew's future in no way diminish our thankfulness in what God has done already, or our hope in what God can do....we just believe this is a process, and want to continue to ask God for wisdom and supernatural healing of Andrew.
Thanks for your support and prayers!
Love,
Kim
Wednesday, January 19, 2005 10:02 PM CST Hi Everyone,
We have had gorgeous weather this past week, and are so thankful that Andrew is able to get outside and enjoy life.
A week from tomorrow he is having surgery to remove his central line (the iv tubes that hang out of his chest), and will have an 'under-the-skin' central line put in it's place. He loves to swim, and is looking forward to getting in the water again. Im looking forward to giving him his first good scrubbing in a year and a half! I told him I would take him to the store, and we would buy ALL the fun bubble baths...he cant wait!!
Some have asked why he is changing central lines, and the reason is, that the line he has now was necessary when he was getting iv chemo's so often, but now that he is on maintenance (and getting less IV chemo, and less blood transfusions) we dont need the exterior line. He does still need a line (for chemo, transfusions, and for hydration or antibiotics in case of emergency)...but since he wont be getting them as often, the under the skin line will suffice.
Tomorrow is Grandparent's Day at his preschool, and he is very excited that his Grandma J will be joining him. It should be a fun time for them both!
I appreciate your continued support, and all of your prayers.
Love,
Kim
Tuesday, January 18, 2005 0:49 AM CST Hi Everyone,
Thanks for all of the messages in the guest book and emails, letting me know that you are praying for our family. It really does encourage us.
Please pray for a little girl named Rebecca, and her parents. She is 7 years old, has the same t-cell leukemia that Andrew has, and today was her very first day of chemo.
Whenever I meet parents who are just starting out, I feel so sad for them. It's devastating to be told that your child has cancer, and then comes the long list of side effects from the treatment (they legally must disclose them all, as you sign a consent to begin treatment.) The first weeks in particular can be likened to having someone kick you in the stomach, knocking the wind out of you....and then sticking your head in the toilet and flushing. Imagine this all repeated over and over, without much time to think or breathe....and that is sort of what it feels like when you find out your baby has leukemia.
Please pray for Rebecca's parents, that God would comfort them, and give them hope. There is a light at the end of the tunnel, but it is really hard to see at first.
As for Andrew, he is doing fine. He is enjoying his last weeks with his tubes.....and looking forward to enjoying all kinds of water fun with his new port. This week at school is Grandparents Day, and he cant wait to have Grandma Janice go with him to class.
Christine is really becoming such a little girl. She is talking more, developing her independence, and copying everything her big brother does! Her birthday is coming up, and Andrew is getting excited.....he loves to buy her dolls (because he LOVES playing daddy!).
Thanks again for continuing to check on Andrew and for praying for his healing.
Love,
Kim
Thursday, January 13, 2005 1:41 PM CST Hi Everyone,
The sun is out again, and the kids are enjoying being able to play outside. They both have LOTS of energy to run off.
We have scheduled some of Andrew's appointments, and I have listed them here, along with concerns for prayer...thanks for asking God to keep Andrew under His protection, as he goes through these things:
January 27th - Andrew will have his exterior central line removed, and it will be replaced with a port (an under the skin central line).
On small children, it can be difficult to place a line and have it work effectively (Andrew is on his 3rd line, as his first 2 had problems working for this reason.) Please pray that the surgery goes well, that the line works, and that Andrew will adjust to his port (and it wont be too painful to use.)
Feb. 9th - Andrew will see a dentist.
During intensive treatment, Andrew was not allowed to brush his teeth, as it could cause an infection. Now in maintenance, he is brushing :) Chemo and radiation can cause a host of problems for teeth, including increased decay as well as lack of root growth. We will have a check up to see how Andrew's teeth and roots are doing. Please pray that his teeth have been protected.
Feb. 15th - MRI
They will check to see if the myelination process has continued, or if there are still delays. They should also be able to see if there has been damage related to radiation and the spinal chemos. Please pray that the myelination is complete, and that everything looks fine.
The MRI will also be the first time that Andrew has his port accessed (and it will not be done by the oncology nurses that he knows...please pray that this goes well and doesnt hurt too much, as we dont want him to develop any anxieties about his port).
We are still waiting to hear about his neurocognitive testing, his EKG, and should have his endocrine blood work results soon.
Thanks for praying for Andrew, and specifically for all of these needs. We are grateful that you are still here with us, supporting our family, and asking God to protect and heal Andrew.
love,
Kim
Monday, January 10, 2005 0:50 AM CST Hi Everyone,
Greetings from flooded Southern California. We have spent the past week indoors, trying to keep dry, which translates into my kids climbing the walls and getting cabin fever.
I put some new pictures on the photo page, these are of Andrew and his friends; Gavin (who also has t-cell ALL) and Noah (ALL). The boys were invited to ride the MetroLink Christmas Train (thanks to Gavin's mom Jessica for arranging this, and for the kind people at Metrolink for spoiling the boys). They received a goodie bag (that included the train whistle they are blowing) and spent a lot of time with Santa and Mrs. Claus. The boys have become good friends, they love seeing each other at the clinic, and share a special bond that Im sure will grow stronger over time.
Andrew has been doing pretty good. He was nauseated most of the weekend, with some vomitting on Saturday. Just a subtle reminder that he is still taking chemo, in case we accidentally slipped too far into "normal" mode.
Now that he is in Maintenance, we have been trying to get back to a "pre-cancer" routine. We no longer make special meals for him, hoping to keep his weight on...and catering to the change in tastes/nausea that accompany the chemo. Instead, he is served the regular meals, with the hopes that he will start eating like the rest of us.
Before getting sick, Andrew ate anything and everything. He was known to beg for food at the local playgrounds. Now, he is satisfied with croutons, white rice, and cheerios. He is slowly but surely increasing his appetite, still wont eat meat (except pastrami and bacon, and soft chicken tacos from Del Taco) and wont eat vegetables. I hope that by the time maintenance is over in 2 years, that he returns to his old ways, eating fully balanced meals.
We have also returned Andrew to his own bed at night. Pre-leukemia bedtimes were a breeze. Once he was sick, he began sleeping with us, as he was often nauseated or having nightmares. He just wanted to cuddle and keep us close, and I cant say I minded. Doug and I felt better having him sleep with us too. But we know that it is important for him to have his own space (and us too), so we got him a new "big boy bed" and he transitioned to it very nicely. His old toddler bed was a little "boat" to go with his nautical room, and his new bed is a "big boat"...he just loves it!
Andrew was seen by the endocrinologist this past week, and he ordered some blood work, which I will drop off this coming week. They will check a variety of different hormone levels, including his growth hormones. They also told me that something else was very low when they tested him last spring (some binding protein thing)...but they said it was nothing to be worried about. Basically, the Dr. said that even if Andrew needs growth hormone therapy, they will not do it until he has been off chemo at least a year. They assured me that with the harsh treatment he got (including very high doses of steroids) that it is not unusual that he has not grown. So, we will just monitor him every 6 months or so, and see how his body is doing. I will let you know when I get the results back from the blood work this week.
Upcoming appointments; We should be hearing about authorization for Andrew's port anytime now. We should also be receiving authorization for an MRI in the near future, to check on Andrew's brain and how it has held up from the radiation/spinals. I also need to make an appointment for him to have an echocardiogram. Some of the chemos can damage the heart, so he will have annual EKGs, and is due for one now. It is also time to have his neuropsych testing, again, just precautionary to monitor for any neurocognitive effects.
I appreciate that so many continue to pray for Andrew, I know that it is a vital part of keeping him in remission and protecting him from the side effects of treatment.
Have a great week, and KEEP DRY!!
Love,
Kim
Wednesday, January 5, 2005 1:36 AM CST Hi Everyone,
I hope you all took time out to watch USC beat Oklahoma! Andrew had his USC jersey on, and Christine looked very cute in her little cheer dress.
Andrew returned back to school today, and his teachers said he was unusually quiet. Perhaps he is tired, or not feeling that hot....
I have been on very minor meds for bronchitis and asthma, and quite honestly, they make me feel weird. I cant imagine having 4-5 chemos coursing through my body! It jsut reminds me of how brave and strong Andrew is....he may be tired, moody, hungry, hyper....but he keeps on smiling.
On Thursday, Andrew will see the endocrinologist. You may remember that he hasnt grown much (less than an inch) since he began treatment nearly a year and half ago. At 4 years old, he still wears 18-24 month clothes. He needs to grow an inch and a half, just to hit 0 n the growth chart. The radiation (and some chemos) could have damaged his endocrine system, which regulates hormones, including those for growth. We hope that the endocrinologist will be able to do some tests, and that the results will be that his system is doing fine. If he is not producing growth hormones, he would most likely need to get them. They involve lots of shots, and the side effects are not great (possible cardiac, orthopedic, new cancer)...and more. Please pray that Andrew's endocrine system is healthy, so that we avoid going down that path.
Thanks for your prayers and all the sweet comments about the kids' pictures.
Love,
Kim
Saturday, January 1, 2005 11:05 PM CST Happy New Year!
We are off to a great start of the year. Andrew is feeling so much better, and looking healthier each day. His hair is really thickening up quickly.
I've added some new photos, these were taken in late October. We had an appointment for our sitting down at the beach, but it turned into one of those (seeming to be frequent these days) weeks of pouring rain and freezing temps. Thankfully, we had a few hours of sunlight, and that is when we took the photos.
Everything was going smoothly, and then the photographer got creative and wanted to get the kids with their feet in the water. Sooner than I knew it, a wave toppled them both over and they were submerged COMPLETELY! I grabbed Andrew first, worried about his central line getting wet. I looked over and Christine was under water. They were both fine and thought it was very funny...it was! It was near sunset, freezing cold...so we stripped them down. We did get some shots of Christine frolicking around naked, she seemed to have enjoyed her swim and didnt mind the chill.
The picture of the kids wrapped in the blanket are after the dip in the sea, trying to keep warm.
As you can tell by the pictures, Andrew is smitten with Christine. When we were on the plane ride home from Texas, preparing to land (the plane was very quiet) he loudly proclaimed his affections, telling her, "When I get big Christine, you are going to be my wife." After I told him that he would need to pick another girl to be his wife, like a friend, since it wasnt a good idea to marry our own sister, he yelled back (they were sitting across the aisle), "Christine, even if I dont marry you, Ill always love you!" The plane erupted in giggles and "awes", it was cute, but he still seems fixed on the idea. She looks up to him, wanting to copy his every move. She has been such a joy, and a great friend and source of distraction for Andrew as he has gone through this journey.
Thank you all so much for continuing to support us with your love and prayers. While Andrew is on maintenance, he is still on chemo, still faces pain and feeling poorly, and we still have the cloud of unknowns hanging over us. We know it is important to thank God for the healing He has done in Andrew, and pray for it to continue.
We hope you are all blessed this year, with much joy and good health.
Love,
The Spragues
Thursday, December 30, 2004 0:06 AM CST Hi Everyone,
Andrew went in for his spinal chemo today. Mary (the nurse practitioner who is the spinal expert) was on vacation...much deserved, but we missed her.
Andrew's oncologist, Dr. Torno, did the spinal. Let me just say how much I LOVE Dr. Torno....and then tell you that she is the one who once told me never to let the doctors do the spinals..to always use Mary. The doctors of course know how to do them, but they just dont do them that often....can you figure out by now that things did not go smoothly?
I could hear Andrew screaming much louder than usual as I waited in the hall. Usually they are out of the room pretty quickly, but today they were taking a while. Then, I heard his loud screams again.
Before his spinals, he gets two medications; versed and ketamine. Versed works by reducing anxiety and calming him, it also has the benefit of making him forget what happens. Ketamine is a drug often abused by kids at raves...it causes the person to feel detached from what is going on, and they are often immobilized.
So for Andrew, he is still awake during his spinals, and he still feels them, but he is so drugged up that he doesnt move, doesnt realize what is going on, and doesnt remember much afterwards. It's not pleasant to see him in this state, but it does the job.
He usually requires 2 doses of each, but there was some miscommunication today.
When I finally went in to see him, they mentioned that when they tried the spinal he was fully awake and moving. I mentioned that he usually is still fairly alert considering he gets the maximum dose for his weight (2 of each)..then they said, "oh, we only gave him one of each, he gets two?"...uh, yeah. So, I guess they gave him some more...and then tried again....still not quite enough but they got the job done.
So, poor Andrew got poked a couple of times. I cant blame anyone, it's just the nature of this torturous treatment. Dr. Torno and the nurses are so loving to Andrew, they always do their best, this just happens sometimes.
To add insult to injury, he has continued to vomit throughout the night. We give him the maximum dose of anti-nausea medication, and usually he vomits a couple of times and that is it. Tonight he has continued to be sick. He is now sleeping and Im praying he feels better in the morning.
I asked Dr. Torno to give me a call when she gets the results of the spinal fluid back. She didnt call (which may be a good sign, she usually only calls if there is a problem)...she also was very busy today, with Mary on vacation she had a lot of work seeing everyone on her own. Im hoping to get the official "all clear" tomorrow, but for now am assuming he is still in remission.
On a happier note, we got the CD with Andrew's favorite song (the one playing now)..but with the upbeat version he likes. Ill try to have it up and playing soon.
Some of you have asked what Andrew got for Christmas. He requested a "little people airport" and got it. He really loves those fisher price little people. He also got a Leap Book which he has enjoyed playing with. Christine got a Dora doll and a baby with a stroller....Andrew likes those too. He very much enjoys all the role playing toys.
Thanks for checking in on him and for keeping him in your prayers.
Love,
Kim
Monday, December 27, 2004 11:38 AM CST Hi Everyone,
We returned last night from our Christmas Trip to Texas. It was really nice to see Uncle John, Aunt Kristine, and cousins Trea and Aaron. They showed us around town, we visited President Bush's hometown of Crawford Texas, and we saw a gorgeous Christmas lights display (best I've ever seen!)
Andrew was able to have some "slumber parties" with his cousins, play with them, and pester them too. All through our flights back home, he kept telling me how much he missed his cousins. We'll have to get together with them again soon.
Today Andrew will be having a consult with the surgeon to remove his tubes (external central line) and replace it with a port (internal central line). The port is under the skin, so the needle pokes will now hurt (it is a huge, curved needle)...but it will allow him to swim and finally TAKE A BATH (he has had only weekly sponge baths for 17 months now...yuck!). He only has to have the "pokes" once a month now, so the port seems like the best option. Im hoping that the surgeon will schedule him to have this done fairly soon, Ill keep you posted.
Andrew will go in for spinal chemo on Wednesday. Please say a prayer that his body is still in remission, and that the pain is minimal.
We hope you all had a wonderful Christmas....God has given us so much, but nothing compares to the gift we have in Jesus.
Thanks for checking in on Andrew and keeping him in your prayers.
Love,
Kim
Saturday, December 18, 2004 2:39 PM CST Hi Everyone,
Andrew is feeling a bit better....his fever is gone, and we are home. Still coughing and not 100% up to par, but good enough to get to Texas for Christmas. He is sooo excited to see his cousins and sleep in his cousin Aaron's bunkbed.
We are trying to "wrap up" Christmas festivities today....and pack.....
Tonight, we are going with a few of our friends to see Santa on the Metro Link Train. Actually, Andrew and his friends will be riding on the train with Santa, as Santa stops along the way to send a Christmas message to the kids waiting at the depots. We are very lucky to be allowed to ride with Santa, thanks a bunch to Gavin's mom ( www.caringbridge.org/ca/gavin ) for setting this up.
Santa will then be coming to our house TONIGHT, (since we wont be here Christmas) After we open our gifts, we will quickly race up to the airport and fly over to Austin, TX. Yee Haa!
I still have a terrible cough too....but we are all on the mend.
Please keep us in your prayers for a safe trip, and we hope that you all enjoy your Christmas.
There are parents with a broken heart this season, as they prepare to say, "good bye" to their little girl. Please pray for Hayley and her parents, a word of encouragement on their website would be a great support; www.caringbridge.org/ga/hayley
May 2005 be the year that God grants us a medical breakthrough for the cure of childhood cancers.
Love,
Kim
Friday, December 17, 2004 9:40 AM CST Hi Everyone,
Andrew is running a fever and complaining that his tummy, arms and legs hurt. We are going in to get him checked out.
Thanks for all of your prayers (my asthma has subsided and Im starting to feel better.) Please continue to pray for Andrew and that our family can go to Texas on Sunday.
love,
Kim
Thursday, December 16, 2004 12:07 AM CST Dear Friends and Family,
Last night was a tough one. Andrew woke up around 1am coughing and wheezing, crying and saying he couldnt breathe. It was obvious that he had a bad sore throat with a lot of phlegm, but I couldnt tell if he was also having asthma. This was very odd, as he felt fine when he went to bed, no cough, no phlegm...he was fine. This came on suddenly and strongly.
I called the oncologist on call, and BEGGED her to let us go the ER at Mission (which is just down the street.) Typically we have to go to the ER at St. Josephs, so that if necessary he can be admitted to the CHOC in Orange. Since he did not have a fever and there were no "cancer concerns"...she agreed to let us go to Mission, but would be in phone contact with their ER....and if Andrew needed to be admitted, even for respiratory problems, we would have to go to CHOC in Orange.
Well, I was pleasantly surprised to see an empty ER....Andrew was breathing fine when we got there. They did a chest X-ray and gave us an inhaler..but said he wasnt having asthma. He was going to send us home, and I asked about antibiotics or SOMETHING as he had a ton of phlegm that rattled with each breath. I got the standard, "why we dont want to overuse antibiotics" lecture from the ER doctor. He even said, "my son has a cough right now, and I wouldnt give him antibiotics." Im gonna guess his son doesnt have a compromised immune system from CANCER!
He suggested we go in to our oncologist this morning. Well, Andrew has his little party.....so I called our beloved oncologist, Dr. Torno, and she said she would call in a strong antibiotic...as it is pretty inevitable that it will just continue on until it is some sort of infection, unless he has it.
We didnt get home until 4, and never really got back to sleep, Andrew continued to wheeze with all the phlegm. We are pretty tired now.
So, he is at his party now :) Thanks for your prayers, and please pray that he gets better quickly, as we are leaving for Texas this weekend, and want to avoid the hospital while on vacation.
Also, my asthma seems to be getting worse, so if you can continue prayers for our entire family to be healthy, I would greatly appreciate it.
Love,
Kim
Tuesday, December 14, 2004 3:37 PM CST Hi Everyone,
Yesterday was a long day, medically speaking.
We took Andrew to the clinic in the morning, for his VZIG (varicella-zoster immunoglobulin)....
as an aside (warning, boring medical info ahead....) the vzig is a blood product, basically from plasma of persons who had recently had chickenpox. They have a way of sorting out all the immunities and making them into a serum.
So, the idea, is that getting this blood-plasma product, packed full of chicken pox immunities, will help Andrew's immune system fight off any exposure.
While we waited almost 3 hours, I promised him that we were only getting medicine in his tubes (no shots or spinals)....
Guess what? The VZIG is administered via 2 intramuscular shots to the leg (like the dreaded peg shots.) I felt so bad lying to Andrew (I am usually honest, and he is usually brave)...he wigged out when he saw the shots, and cried and screamed while they were given. The serum is pretty thick and it takes some time to push it all into his legs. The poor guy has suffered so much, I feel like at every turn he is getting some hideous torture treatment.
After the clinic, we went over to the neurologist for a consult.
more background info.....early this year, prior to Andrew's cranial radiation, Andrew had an MRI of his brain and they found "delay in myelination". Nobody has ever clearly explained what that means.....I have been trying to get an answer since last Feb. when the MRI was taken.
So, when I set up this appointment, I very clear let them know that I wanted the doctor to go over the MRI before the appt. since we were coming in to have it explained.
Sure as anything, he had no idea why we were there, and had never seen the MRI. So, while we are waiting, he gets a copy of the report (1 page) and reads the one line assessment; "delay in myelination"
Then he asks, "It says he has a delay in myelination, what more do you want to know"
WHAT????????????????PLEASE SOMEONE HELP ME!!!
I calmy, (I was proud of myself) told him that I was hoping to find out if the delays were within the normal range (or close to it) and were normal delays due to age (as one doctor told us)...or were they damage from the chemo??
Was there a pattern to the delay? could it be made up? (we have been told that areas of the brain that are damaged will likely not heal themselves, thanks to the radiation.)
Furthermore....we are continuing to give Andrew spinal chemo, which can cause neurotoxic damage to the brain. Many doctors do not do any more spinals after radiation......if it turns out that Andrew still has delays or damage....then maybe we need to consider stopping his spinals....
Does he really not know what more information I want??
He told me that the delays were probably damage from the chemo ("he didnt have any other neurological problems, right? so they are probably from the chemo")...then he said, "but it is hard to know at 3, it is better to check when he is 5"
Well, I want another MRI, as the past year has been full of potentially neurotoxic treatments, and I really would like to get some clear info before we move forward with more and more spinals (2 more years of them).
So, we will wait for authorization and have another MRI, and I am really praying to God that the person that reads the actual MRI can give me some clear information.
Please pray that Andrew's brain has been corrected of any delays, and that God continues to protect him.
Basically, let me just tell you, that all this haggling with doctors and appointments is very tiresome. At the end of the day, (while we are thankful for the past year and half that God has given us with Andrew)...it is always in our mind that we are putting him through all this harmful treatment, taking HUGE risks with further long term side effects...and the damn leukemia could still come back.....it really stinks having to do this for years and years with no promise of a cure.
Then....it was time to take care of myself. With so much time spent hauling Andrew to the hospital/clinic the past year and a half...the rest of us have not really had time to go to the doctor.
I have bronchitis and asthma, and was able (not after much haggling with my doctor) to get an antibiotic and inhaler. Please pray that I got over this cold and that Andrew doesnt catch it. Also, Christine still is coughing, please pray that the whole family would get back to good health.
We are all very excited to be going to Texas for Christmas. The kids are gearing up to see their cousins.
Yesterday at the clinic, Santa was there giving kids toys....Andrew said, "that is so nice of Santa to visit the kids with cancer two times". We also saw a little girl that was often in a room near us in the hospital. She was usually alone, crying through the night...Andrew always wanted to go and give her toys. Well, we saw her at the clinic yesterday and Andrew said, "I think we should buy "V" a toy to cuddle, so she doesnt ever feel alone again." How sweet is that??
I hope you are all enjoying the Christmas Season, and taking time to remember God's gift to us....the greatest gift of all.
Love,
Kim
Sunday, December 12, 2004 10:34 PM CST Hi Everyone,
Andrew is feeling better, still having some rage issues, but much less than last week.
Andrew may have been exposed to chicken pox this past week, so we will be going in for an infusion of VZIG (varicella-zoster imunoglobulin), which is basically an immune booster to help him fight the chicken pox, as it can be quite life-threatening to children with leukemia.
We are also going in for a scheduled visit with the neurologist tomorrow.
We hope to review Andrew's MRI's and perhaps get some new ones, to monitor the effects of the chemo and radiation on his brain. Last year there were some delays in mylenation, and we never were able to talk to the neurologist to have that fully explained, I hope to have that done tomorrow.
If you click the little play arrow above on this website, you can hear Andrew's favorite song; "Waves of Mercy"...he prefers the peppier version song by some girls, but this is the only version I could find to put on the computer.
I hope you are all having a wonderful Christmas Season.
Love,
Kim
Sunday, December 12, 2004 10:34 PM CST Hi Everyone,
Andrew is feeling better, still having some rage issues, but much less than last week.
Andrew may have been exposed to chicken pox this past week, so we will be going in for an infusion of VZIG (varicella-zoster imunoglobulin), which is basically an immune booster to help him fight the chicken pox, as it can be quite life-threatening to children with leukemia.
We are also going in for a scheduled visit with the neurologist tomorrow.
We hope to review Andrew's MRI's and perhaps get some new ones, to monitor the effects of the chemo and radiation on his brain. Last year there were some delays in mylenation, and we never were able to talk to the neurologist to have that fully explained, I hope to have that done tomorrow.
If you click the little play arrow above on this website, you can hear Andrew's favorite song; "Waves of Mercy"...he prefers the peppier version song by some girls, but this is the only version I could find to put on the computer.
I hope you are all having a wonderful Christmas Season.
Love,
Kim
Thursday, December 9, 2004 2:15 AM CST Remember that song, "I can bring home the bacon, fry it up in a pan..."...it was a commercial for a really bad perfume (sorry Grandma J)....anyways, we have been frying up a lot of bacon around here! Andrew's steroid food cravings have been for bacon! Morning, noon and night!
I just fried some up for his "bacon sandwich" for his school lunch. On Tuesday, he had a baggy of bacon...no bread...so at least tomorrow he is having it as a sandwich.
While we still have the food cravings, we also have the roid rage. He goes from cuddling me and telling me, "you're the best mommy ever, I am so glad you are my mommy" to a head-spinning, cussing, angry little guy.
Usually after he has one of his rages, he either comes and sobs in my lap or falls asleep......but while he is in the midst of them Im afraid his head will explode!
He has been having headaches and nausea, which I believe is from coming off the steroids. His doctor told us before that if these symptoms continue that we can taper him off, and I will talk to him about doing that next time.
Andrew's heaviest chemo days are Wednesdays....so his nausea, aches and icky feelings are at their worst on Thursdays. Please pray that he has a good day tomorrow.
He has been very excited about the new playhouse they have at his school. He told me that today (Thurs.) is the big day when they can finally play with it, I hope that helps to keep his spirits up.
Today is Daddy's birthday.....we will take him somewhere special tonight (if you are reading this daddy, sorry, it's a surprise!)
I hope you are all enjoying the Christmas Season. Thank you for your continued support and prayers,
love,
Kim
Monday, December 6, 2004 10:59 AM CST Good Morning Friends and Family,
Andrew is feeling great, physically. He had a busy weekend, highlights of which include; his Christmas Pageant, viewing the USC Trojans spank the bruins, attending a Living Nativity in our community, having fun at Sunday School and spending time with his Aunt Joyce and Uncle Art.
Aunt Joyce recently underwent treatment for cancer, and is now doing great! Please pray that she continues to do well. Uncle Art is doing ok, but waiting for a liver transplant. Please pray that God restores his health.
Thank you for all of the emails and guestbook entries encouraging us about Andrew and sharing your own (or your child's) experiences with steroids. It is comforting to know that we are not alone (or going crazy). Andrew is still having an emotional time; he goes from being very loving, to aggitated in a split second. He spent the better part of yesterday sobbing, deep sobbing, because he could not go to Toys R Us to buy a Leap Pad. This was beyond a tantrum......just deep sadness and despair. He cant control his emotions on the steroids, so it is hard to soothe him. Today is his last day on steroids...since they take some time to leave the system, we are hoping that he will be back to "normal" later in the week.
A big WELCOME HOME is due to Uncle John. He has been in Iraq for the past year, and came home this past week. We are going to Texas to visit John, Kris, Trea and Aaron for Christmas ...cant wait!
I hope everyone is enjoying the holidays,
Love,
Kim
Saturday, December 4, 2004 11:03 AM CST Andrew is running around the house, full of energy. Thanks for all of your prayers!
Last night was the Christmas Program at his new preschool. All the kids were lined up on stage (over 100 kids or so). Andrew was smack in front, as he is about 1/2 the size of the other kids.
As the program began, he was signing, dancing a bit, very animated. I could tell he was really enjoying himself, and it was fun to watch...I was very proud of him.
Then, something happened...he started turning around, singing with his friends (back to the audience now)....then as time progressed, he was "tickling" his friends, being very touchey-feeley, and then he began pushing!!!
He had to be physically removed, and put on the side.
It is hard to know when to worry and when not to worry.
I worked with preschool aged children for many years, and would be tempted to say, "that is normal 'just turned 4' behavior."....but then I factor in, "he is on steroids this week, which makes all of his moods heightened", "the chemo can cause ADD", "the brain damage from treatment can cause aggression" "he hasnt been around kids in 1.5 years, he doesnt know how to act"
It is hard not worry about what he has gone through and the effects it will have on him for the long haul.
It is also hard to find that balance of discipline. For the past year and a half, Andrew wasnt around people often, but when he was, he was treated like a king. People gave in to his every request, wanting to make him feel better and bring a smile to his face. He received so much special attention, and I wonder if it has all gone to his head.
When he acts out, especially if it is steroid week, it is a tough call re: how much to ignore and how much to intervene. Doug and I felt it was better to err on the firm side, but many people would say, "he doesnt feel good, dont get upset with him."
When Andrew was diagnosed, we had to trust that God would use all of this for Andrew's good, but it's not a trust that always comes easy.
We did enjoy watching Andrew (at least the 1st half of the Christmas Show) and he was very proud of himself and so excited that he we liked it (again, how much to say "you were great" and how much "it is not OK to turn around and push people!")....
Thank you for your continued prayers....
love,
Kim
Wednesday, December 1, 2004 3:56 PM CST ***Thursday Night Update****
Andrew had a good day at school, but is sleeping a lot (and showing signs of 'roid rage' when awake.)
He may have been exposed to Fifths Disease at school. This would cause his blood levels to crash if he gets it, so please pray he doesnt.
He came home from school telling me about the Bible lesson they learned, about the 10 lepers that Jesus healed, and how only one of them came back to say, "Thank You" to Jesus. We talked about how important it is to tell Jesus "thank you" when he makes us all better. Andrew looked up and said, "thank you Jesus for making me better from cancer."
thanks.
Hi Everyone,
We just returned from our trip to the clinic. Andrew received his IV chemos. I'll list his meds with the usual side effects he experiences, so that you know his prayer needs;
vincristine; leg and joint pain, nerve damage, muscle weakness.
Methotrexate; tummy pain, nausea, vomiting.
Steroids; constantly hungry (but only for particular foods), wild mood swings and temper tantrums, bone pain and muscle weakness, tummy aches.
His blood counts look great....low but not too low, which is just where we want to see them.
He has not grown, but his weight is slowly climbing, which is good.
Andrew enjoyed seeing his friends at the clinic; Alexander, Noah, and Gavin (sorry you were throwing up buddy, hope you feel better.) Please pray for these friends, as well as our friend Bailey. They are going through the tough stuff right now.
Andrew still has a hefty cough, and we are keeping an eye on it. Please pray that he does not develop bronchitis, pneumonia or a sinus infection, as his low immune system cant fight the infections well. He also has had some symptoms of urinary tract infection, so they took a urine sample, should know the results tomorrow.
We made appointments to have an echocardiogram. We have these periodically, as some of the chemos can cause heart damage. Please pray that his heart is doing well.
We also made an appointment for the endocrinologist, as the chemo and radiation can damage the thyroid and other hormone glands (including the production of growth hormones). Please pray that he is doing well in this area.
Finally, we have an appointment set up for the neurologist, to review his MRIs and determine how his little brain is doing with all of the spinal chemos and radiation.
Andrew is enjoying life.....we are grateful to all of you for your prayers and support.
love,
Kim
Sunday, November 28, 2004 0:06 AM CST Hi Everyone,
I hope you had a wonderful week, and were able to find much for which you are thankful.
Andrew had a great week. Despite fighting this congestion/cough, he kept busy and had a lot of fun.
Tuesday, Heidi took the kids to Disneyland, where they experienced Small World for the 100th time....Andrew just loves this ride. I think it is funny that with all of Disney's technology, it is the ride with cardboard cut outs and tissue paper and glitter decorations that my kids like the most.
We also had a great treat this week, as our caringbridge friend Kendrie ( www.caringbridge.org/ga/kendrie ) and her family came out for a vacation. They were visiting friends, and were kind enough to let us tag along. It was great getting to meet our friends in person, after sharing so much with them online.
Wednesday, we went to Sea World, and Andrew enjoyed seeing whales, sharks, dolphins, sea lions and penguins!
Thursday, we feasted with Grandma J....well, most of us feasted. Andrew sat at the table with a roll and pat of butter on his plate. He ate the butter, left the roll. Not quite the hungry pilgrim.
Friday, we again joined our friends "Kendrie and the gang" and went to Lego Land. Andrew had a blast, and especially enjoyed the play area.
Tonight, we began our holiday tradition of driving around looking at Christmas lights. Our neighborhood goes all out, as there is a contest amongst the streets. We like to pack up the kids before bedtime, put them in their carseats....and cruise up and down looking at the bright lights, internally lit Santas, and lost reindeer grazing the lawns.
Next week, we return to our regularly scheduled life.....and Andrew goes in for his monthly IV chemos. Please pray that he can get over his cough/congestion and is strong enough to take on his heavy chemo.
Love,
Kim
Sunday, November 21, 2004 10:53 PM CST Hi Everyone,
As we prepare for Thanksgiving, we consider all for which we are grateful. We know that Andrew is a gift, a blessing, and we love each day that we have to hold him. We appreciate the wonderful prayers, asking God to continue to heal Andrew from the leukemia.
I hope you are able to take time to thank God for all that He has given you.
No matter your circumstances, it could be worse.
Andrew is doing well, he gets tired easily, which usually begins with a screaming tantrum, and before you know it, he is fast asleep. I know the medicine makes him feel yucky, but he is strong.
Today, while we were at the store, he asked, "Mom, do you remember when I didnt have cancer?", I said, "Yes, do you?" and he said, "no". I reminded him that he used to have a fun time in the bathtub, and swimming (he hasnt done either since being diagnosed, due to his central line that can not get wet.) He smiled, and recounted some fun bath time memories. I asked if he remembered our old house, where he used to play, and eat and sleep....he laughed and shared lots of stories...(since he got leukemia 2 days after moving into our current house, all memories at the old house are "pre-cancer"...it makes it easy to dilineate for him.)
I also told him that God is taking all the cancer away, and he wont have it forever. One day he wont have a line or a port, he wont take chemo every day, he wont feel yucky, and he wont have cancer. That will happen when he is still a little boy. That made him smile too.
Thanks for praying, for giving us hope that one day, this will all be over, just a memory, and Andrew will be able to live without cancer.
Love,
Kim
Thursday, November 18, 2004 5:37 PM CST Hi Everyone,
Thank you for your prayers and support.
Before I go any further, I would like to congratulate "Team Masher" for raising the most money for this years CHOC Walk in the Park. The team was formed to support John Masher (who, by the way, as an individual raised the most money for the walk!! Way to go!) John is a friend who is being treated for cancer.
When John was 2 1/2, he was diagnosed with Leukemia (ALL). He went through treatment for a few years, and at the age of 14, celebrated 10 years of remission. Sadly, he was recently diagnosed with inoperable brain tumors (I hope I am telling his story accurately....but I believe he did have surgery to remove some of the brain tumors, to slow down the process, but it is not possible to remove all of the cancer.) The chemo and radiation that our kids need to survive has a host of possible side effects, one being "other cancers", mostly other leukemias and brain cancer.
I would also like to thank all of you who supported "Andrew's Team". We came in 2nd place, and also earned a brick (the top 2 teams get a brick). I know that I feel honored to have a brick next to "Team Masher" on the walkway outside of CHOC. The brick from Andrew's Team will be a reminder of the love and compassion that our community, family and friends have shown to us. The brick earned by Team Masher will remind us of the many other kids fighting this illness, and the importance of continuing to raise money for a cure. If you go to www.chocwalk.org you can see that the winning teams have been posted.
Additionally, I want to say, that all the teams this year did awesome. Last year, the 1st place team raised $16,000. This year, Andrew's Team raised over $41,000!! There were several teams that raised over $20,000, and the bar has been raised for future walks!
Now on to Andrew...he is doing fine. He still has a lot of congestion, and the doctor has given him another antibiotic to take to clear things up. He has a lot of energy, and is not letting this slow him down one bit.
Thank you for your continued prayers, it is reassuring knowing we are not going through this alone.
Thank you too for praying for our other friends. If you would include John Masher and his family, I know they will appreciate it.
Love,
Kim
Tuesday, November 16, 2004 9:24 PM CST Hi Everyone,
Andrew is feeling pretty good. He is having a lot of mucous, which could be from his meds...but I dont want him to get pneumonia (which he is at risk of getting) or a sinus infection. We will go to the doctor tomorrow to just double check that he doesnt need to have his antibiotics increased (he is already on antibiotics continually to prevent pneumonia). Please pray that he remains in good health, and that this issue clears up quickly.
Please pray for our new friend Sam. He is 4 and diagnosed this past week with leukemia. Tomorrow he will have his "day 7" bone marrow aspirate, to see if he is responding to the chemo. It is a very important day, please pray that the tests show that he is in remission.
Also, please pray for his parents, as they adjust to Sam's leukemia diagnosis. May God strengthen them and draw them close, and remind them of the hope that only He can promise.
Someone asked me today, what do you say to a parent who has a child with cancer? How do you share the comfort of God with someone, who is facing such a horrible situation? I can tell you that for me, "he will be ok" didnt help....because I know there is no guarantee. "this is God's plan" was not comforting, as a loving God would never "plan" for a child to be tortured this way....God hates cancer more than I do. What is of comfort to me, is knowing that God is in the business of taking a bad situation, and turning it into a good situation. He can show us blessings, even during this trial. The most reassuring promise that we have, is living with Christ in Heaven, for all of eternity. This life is temporary, whether we have 2 years, 20 or even 200....we will all pass....I am comforted in knowing that Heaven will last forever, and we will be with our loved ones....no pain, no cancer, no death...that is our hope.
Some of you may know that my next endeavor, is to get "specialty" license plates that will raise money for childhood cancer research. There is currently a road block, as the courts in California have determined that the legislature can not allow any more specialty plates (long story!). So, the first step, is to get legislation passed to allow specialty plates to be allowed again. (they tried to get legislation last year, or the year before, and it was shot down.)...so this year, State Senator Ray Haynes is going to re-introduce legislation that will open this door and allow the specialty plate process to be reinstated. It is the first of a long process...but please pray that this goes well, as it will be a great way to raise (much needed!) funds for childhood cancer research.
They are currently "building a coalition", and plan on moving forward when the state legislature begins in January. Ill keep you posted!
Thank you for checking on Andrew, for keeping him in your prayers, and for your messages of encouragement. I imagine that a note in the message book may not seem like much from the outside....but your support means so much to us, whether you are a stranger or a friend. Some have mentioned that they dont know what to say...just knowing that you care and that you are praying for us is worth more than words.
Love,
Kim
Saturday, November 13, 2004 11:55 PM CST Thank You! Thank You! Thank You!
Andrew's fever, which began in the middle of the night, hovered just under 100 all morning, and by afternoon it was in the low 99's and now is back to normal. Thank you for praying, as we know that God heard you, and kept his temperature down.
We are so thankful to have dodged the hospital, but ask you to pray for our friends that are inpatient.....Bailey (who is battling a fever) and Sam (a newly diagnosed boy). Please pray that God keeps them strong and heals them from cancer.
Andrew was able to go to the Team In Training "kick off" this afternoon.....where we saw our many friends who will be riding over 100 miles in Tuscon, AZ next weekend. They have all raised money to help find a cure for blood cancers...they are A*M*A*Z*I*N*G. Andrew got a special surprise too! The coaches gave him his very own fireman jacket (with his name embroidered on it), a hat, hose and working fire extinguisher (toy). Thank you! He is so spoiled by the TNT heroes!
Much appreciation for all of your prayers, they are such a vital part of Andrew's return to good health.
Love,
Kim
Friday, November 12, 2004 11:36 PM CST ****Saturday Morning Update****
ANDREW HAS BEEN RUNNING A FEVER, PLEASE PRAY THAT HIS BODY FIGHTS OFF WHATEVER IS CAUSING IT, SO THAT THE FEVER GOES AWAY. IF IT CONTINUES MUCH LONGER, WE WILL HAVE TO GO TO THE HOSPITAL. THANKS
Andrew has had another great week. Nausea here and there, and achey legs, but overall great.
He has had a busy week, with preschool and Kinderoos! His new gymnastics class only has 3 other children, so he really gets a lot of attention and instruction. This will be great for rebuilding his muscle mass and strength.
This weekend we will be "sending off" the Team in Training Cycling Team, as they head out to Tucson Arizona to ride 100 miles, raising money for the Leukemia and Lymphoma Society. Leukemia remains the number one childhood cancer...and we were reminded of that this week, as through a friend, we learned of another little 4 year old boy, Sam, that was just diagnosed with leukemia. Please keep Sam, and the other children battling cancer in your prayers.
We thank you for bringing Andrew before God, asking His for healing mercies, and continued strength.
Love,
Kim
Wednesday, November 10, 2004 0:12 AM CST Dear Friends and Family,
Thanks for continuing to check on Andrew and for praying for him faithfully. He is feeling good and doing well.
He has just begun his second month of maintenance, and his counts have stayed just where we want them (below normal, but not too low).
Doug and I had a wonderful weekend in Solvang, where we participated in the Solvang Prelude bike ride. The ride went through wine country, which was beautiful, rolling hills of green.....great for the eyes, not so great for the legs and bottom when you are on a bike! I was sore the next day....but the pain didnt last long, and was worth the gorgeous scenery.
Many of our TNT teammates went as well, and it was great to get away and spend time with our friends.
Andrew and Christine ruled the roost with Grandma J as their babysitter. They went to all their favorite "hot spots", IHOP, Rain Forest Cafe, and McDonalds. They also went to Grandma's work and saw their friends...friends that pray for them, give them lots of goodies, and make them smile. Andrew was given a "soldiers outfit", the helmet, shield, sword, etc. ....his friend Valentine gave it to him, as she said Andrew is a real "soldier of Christ"...well, he LOVES that, especially the sword!
Today was his second day in preschool.....fun! fun! fun! As the teacher said, "he isnt shy"...no, he isnt...hopefully they will soon train him in the ways of raising his hand and not speaking out....I am looking forward to that. He is doing great...and we are thankful that he is able to attend.
Friday, Andrew will continue his gymnastics class, but now as a "Kinderoo" bye bye Tumblebees.....hello Kinderoos!! He is 4 now, and ready for the next level :)
If this post sounds like life is back to "normal", in many ways it is. We are grateful that Andrew is feeling well and staying strong.
Almost every day, someone says, "I'm so glad Andrew is all better"...and while we are blessed to be doing well, his battle is far from over. His treatment is long (the longest frontline treatment of any cancer, and the longest of leukemias), and it is not easy. His prognosis is still the same as when we began this journey (as relapses usually occur once the chemo has been reduced or after treatment is ended.)....so, we appreciate so much all of the prayers for Andrew, and want you to know that they are important and greatly needed.
As we approach Thanksgiving, and consider those things for which we are thankful, the prayers of our friends are high on our list....we are blessed to have you all supporting our family.
Love,
Kim
Friday, November 5, 2004 0:16 AM CST Hi Everyone,
Andrew has had a pretty good first month of Maintenance treatment. We saw Mary (our Nurse Practitioner) on Wednesday, and she is pleased with how Andrew is tolerating his chemo. I told her I was worried that he has been nauseaus all week, and she said, "Yes, he IS on chemo, it WILL make him nauseaus." Life had gotten so close to normal (sort of), that I forgot that he is still taking oral chemos every day.
Mary has put in the order for Andrew to have his tubes replaced with a port-a-cath. It is essentially the same mechanism, a direct line to his heart, but it is all internal. Instead of 2 IVs dangling from his chest, he will have a bump under his skin. The good news...we wont have to flush it every day, he can get wet, and they cant be yanked out. The not-so-good news, is that it is a device under his skin, which is sensitive to pressure and being bumped, and....now it will hurt when he gets labs, chemo and transfusions, because they stick a big needle through the skin and into the port (it stays there like an iv while he gets meds over time.) The clinic will notify me when they have received insurance authorization for the surgery, Ill keep you posted.
Andrew enjoyed his first day of preschool today. (new pictures in album). I stayed for the first hour, and watched "circle time" and "chapel". I know that this will be a wonderful and enriching experience for Andrew, but I sure will miss him, even if for only 2 mornings a week.
Doug and I will be going to Solvang (Dutch town near Santa Barbara....for those outside of California, the area may now be better known for being near Michael Jackson's "Neverland Ranch") We are going for the weekend, for a bike ride with friends. The weather man is forecasting rain...so we may do more sight seeing than cycling.
Grandma J is coming to stay with the kids. They have big plans, I am sure, and will have a good time being spoiled.
Andrew is on steroids, and is already very emotional. Doug and I did a great job of planning our get-away....leaving Grandma J to suffer through the "roid rage".
Thanks for checking in on Andrew and for keeping him in your prayers.
Love,
Kim
Wednesday, November 3, 2004 0:43 AM CST Hi Everyone,
Andrew has just completed his first month (28 days) of maintenance. Tomorrow he returns for more chemo. You would think, that he would be feeling his best today, but he was nauseated, throwing up, and really tired. In fact, he wasnt able to make it to Tumble Bees. As we got in the car to go, he was throwing up, but saying he still wanted to attend. On the way there, he said he wanted to do gymnastics, but clearly didnt look good. As we pulled into the parking space at the gym, he said, "I dont think I can do gymnastics" I asked him if we should go home, and he said yes.
It made me sad, because I know how much he looks forward to his class. Later, while he was resting, he popped his head up and said, "The other kids in my class are probably saying, 'where is Andrew today, he is not here'." I thought that was so funny. I reminded him that he will have lots of other days at Tumble Bees, and not to worry about missing anything. He smiled. Later in the day he seemed to perk back up and felt fine.
I was able to meet with Andrew's new preschool teacher, and the directors. It's really a fine line about explaining his situation without scaring people. I think his teacher is concerned that he has two IV catheters hanging out of his heart, and he will be in a room with rambunctious (normal) preschoolers. They dont know Andrew...but I assured them, that he is very capable of handling himself with other kids (verbally)...and if the kids arent careful with him, he will let the teacher know. Then there is the whole "contagious diseases" issue. Why would we send a kid into a room of preschoolers, when his body is not strong enough to fend off typical childhood diseases?? Am I scared of Andrew catching Chicken Pox or having his tubes pulled out? of course. But this whole thing is out of my hands, and I have to trust that God is protecting him, from cancer as well as all the little things that go with it.
Andrew is super excited to go to school, and I am grateful to see him reach this milestone. I look forward to hearing all of the details about his days.....to his recitation of his memory scriptures, understanding of new academic concepts and talk about his friends. I know he will do great at school!
Thanks for your continued prayers!!!
Love,
Kim
Monday, November 1, 2004 9:13 PM CST Hi Everyone,
Andrew is very excited, as he begins preschool this week! He is going to a Christian Preschool not far from home, and is thrilled about it. I will keep you all posted about the particulars......
Last night we went to a Harvest Festival. The kids had a lot of fun dancing, riding a mechanical bull, plaing in a bounce house and more.
Andrew is doing pretty good. Some nausea today,, but overall feeling much better than the past year.
Tomorrow we will do his labs, and Wednesday he will go in for more chemo (including a spinal). We will also be checking his cortisol level, to monitor some of his hormone functioning. Please pray that everything is fine in this area, as the chemo and radiation can damage his bodies ability to create hormones correctly.
On a fun "reality tv" note....one of our neighbors is on Trading Spaces tonight!! I should have alerted you all sooner (as it airs here in 30 minutes).
Please vote tomorrow!!
Love,
Kim
Saturday, October 30, 2004 0:09 AM CDT Hi Everyone,
Well, Thankfully, Andrew selected a "Harvest" themed border that will allow you to read this journal entry (rather than the fun pumpkins that covered the whole page.)
With life returning to "normal", and Andrew enjoying fun kid stuff, it is easy to forget that he is still fighting the beast. This morning he threw up quite a bit, a gentle reminder that he is still on chemo everyday, and still in a battle needing prayer.
Andrew is on a waiting list for preschool, and tonight we went to the Harvest Festival at the school. He had a great time and is really excited to begin attending. On Sunday we will go to another Harvest Festival...fun! fun! fun!
I have to mention, that adorable Christine is doing her part for the upcoming elections. She has a talking George Bush doll. (I dont know where they sell these things, Grandma J brought it over, and when you push a button, George Bush talks.) Anyhoo....Christine LOVES George Bush! She takes him everywhere, she even brings him to bed! Im trying to teach her to say "George Bush" because right now, she calls him "Daddy".
Have a great weekend!
Love,
Kim
Wednesday, October 27, 2004 7:58 PM CDT Hi Everyone,
These pumpkins were selected by Andrew. We were talking today about the Harvest, and how God provides us our food and all of our needs...so he decided we should have pumpkins on his website. Unfortunately, I do not know how to make them into a border....so, they are the backdrop of his page. I hope you can still read this!
Andrew has had a great week! Tumblee Bees (gymnastics) on Tuesday...his favorite day of the week. We also went and visited a preschool, as we are considering having Andrew attend 2 half days each week. Andrew enjoyed seeing the other kids and is very anxious to go to school. He seems most fixated on whether or not he should bring his own food or eat food from their "cafeteria".
One day Andrew may read this and get mad that I shared his personal info...but Im happy to say he has been in "big boy" pants all week and doing great! Andrew began using the toilet when he was less than 2. I was pregnant with Christine, and didnt have the energy to take him (diapers are really so easy!) He insisted on going, so we bought him his elmo toilet seat and little stool. He was doing very well, and at the time he was diagnosed, he was nearly trained. Once he was put on chemo, it really changed things. Some meds gave him diarrhea, some constipated him, and the steroids cause frequent urination. I realize this is a bit graphic, but you can see that it makes it hard for a little person to have "control" when so many changes are happening. Not to mention the many days tethered to an IV with constant fluids.....just too difficult to go potty in the toilet.
Now that Andrew is in maintenance, we got him a bunch of big boy pants, and made the switch. He is on his 5th day and has been accident free :) One more milestone for which we are both proud and grateful.
We want to welcome Spencer Rocket back to California! Our friend has really seen God's miracles, and is finally back home after 7 months at Duke where he received a bone marrow transplant. You can visit Spencer and welcome him home by visiting his website at; www.caringbridge.org/ca/spencerrocket
Thanks for checking on Andrew and for your continued prayers and support for complete healing!
Love,
Kim
Saturday, October 23, 2004 11:28 PM CDT Hi Everyone,
I realize it is not snowing yet (and wont be any time soon here in Orange County), but Andrew really wanted the snowmen border on his page.
Andrew has had a great weekend. He and Christine had a sleep over with Grandma J for the first time since he became diagnosed. They had so much fun eating popcorn and cuddling together.
Grandma took the kids to the Rain Forest Cafe where they enjoyed seeing all the animals (the monkeys were their favorite).
Andrew is feeling great. His appetite is starting to pick up and it is so nice to see him eating! Andrew is not allowed to eat dairy in the evening, as it can interfere with the chemo he takes each night. For this reason, we make sure he gets his favorites (like cheese, pizza, cheese and ice cream...and cheese) at lunch.
An update on our friend Spencer....he will be returning to California this week! Earlier this year, Spencer's leukemia relapsed. He had a very difficult time getting back into remission (necessary before proceeding with a bone marrow transplant.) Once in remission, his family left their home and moved to North Carolina so that Spencer could get treated at Duke. He underwent a bone marrow transplant using umbilical cord blood (a very difficult and risky treatment). He has done AMAZING! We are thankful that God has brought Spencer and his family through the hardest part, and that they are returning home to California to complete his treatment. Please stop by his webpage with a note of encouragement. It has been very tough on his family emotionally, it is also financially difficult to stop your livelihood and take up a second residence across the country. Please continue to pray for Spencer. www.caringbridge.org/ca/spencerrocket
Thanks for your support and prayers!
Love,
Kim
Thursday, October 21, 2004 0:59 AM CDT Hi Everyone,
Thanks for all the birthday wishes, it's amazing to think Andrew is 4!! It's hard not to get melancholy over 3...such a sweet age, we saw the lows, but we also saw the highs....never to return to that bittersweet year...the toddler years are over..he is definitely on his way to becoming a big boy.
Andrew enjoyed a fun "Fire Station" birthday party. It has been raining quite a bit, so the party that was initially planned for the park was moved indoors to a neighborhood clubhouse. We had a really fun time...the rain didnt dampen our celebration. "Mostly Sunny" (that is her 'name') did a great job of keeping the kids entertained with games and stories.....and then, guess who showed up?? The guys from Station 58, our Ladera Ranch Fire Men!! They came in the truck and let us go inside. They gave us fire hats and sticker badges, and sounded the horns and flashed the lights. It was a special treat!! After our Fire Heroes left, we smashed open a fire engine PINATA!! (thanks to the Fox boys!)
Andrew is very blessed to have loving friends to share his birthday with him, and to have so many family, friends and even strangers that are praying for him everyday.
He has felt great all week. He gets tired, legs get sore, and he is a bit emotional....but has not had any vomiting or painful treatments!! We did his blood counts today, and he is just where he is supposed to be (lowered immune level and blood counts, but not too low.)
Thanks for checking on Andrew and for sending him birthday wishes...he loves to read his messages.
Love,
Kim
Sunday, October 17, 2004 4:00 PM CDT Hi Everyone,
Your prayers for Andrew are greatly appreciated. He felt good this weekend, and we have not seen a reoccurence of the headaches, arm pain and vomitting. This supports the theory that it was caused by the steroids. He will take them again in a couple of weeks, so please pray this does not happen again.
I was able to enjoy our church's Women's Retreat this weekend. Dad (and Grandma J) took Andrew and Christine to Chuckee Cheese....and my little guy used all his tokens to buy me a multi-colored, plastic slinky! What a wonderful treat!
He is very excited about his Birthday on Tuesday, and so are we. Typically, when your child turns 4, you marvel at the growth and developmental accomplishments of the past year; learning to write his name, greater command of language, improved coloring and drawing, more confident independence...and the ability to share!....this year, we are thankful for all of those. We also are thankful for the year itself.
We are mindful that the battle inside Andrew still rages on. We continue in prayer and thanksgiving over the work that God has done in him. I often think about the Thursday afternoon, Aug. 2003, 6 days into Andrew's treatment. "I'm sorry" Doctor Torno told us, "he is not responding, and I think tomorrow's test will confirm a poor prognosis." The pain was deepest for me at that moment, and Im sure the devil thought he had succeeded......but many prayed, and God was with Andrew...and the test the following day was a miracle. "Praise the Lord" Dr. Torno told us.....Andrew made a remarkable turn around.
That was the moment of healing...a continuous process. The rewards of which include watching Andrew turn 3, and now 4! So many kisses, hugs and clever comments we have been able to experience with Andrew this past year!
Thank you for your prayers! Many have asked what Andrew might like for his birthday. I must say, that this little boy has everything! He has more toys than he knows what to do with....so many of you have showered him with gifts all year, and he truly wants for nothing. The best gift you can give Andrew, is that of continued prayers. Prayers for many more birthdays, good health, protection from side effects and cancers. Prayers that God will continue to use his life for good, that Andrew would grow up recognizing the work God has done in his life, joyful for all of the love and support from all of you.
Love,
Kim
Thursday, October 14, 2004 0:59 AM CDT Hi Everyone,
Thank you for your prayers. Your emails and messages in the guest book are very comforting to us, so thanks for letting us know you are praying.
Andrew went back to the clinic today, to follow up on his episode last night. He was still vomiting and had a lot of pain in his arms.
From the information gathered from other cancer moms, older cancer kids at the clinic (Andrew is too young to really tell us how he feels, and today it was nice to talk to a teen, Kimberly, who is on the same treatment plan as Andrew), and from doctors, our best guess, is that his body is reacting to coming off steroids.
Andrew takes high doses of steroids, and in LTM (maintenance) he will take them the first 5 days of every 28 day cycle. When Andrew was in the intensive phase, he would be on steroids for longer periods, and slowly weaned off. With the 5 day "pulses" of steroids, he isnt weaned. The doctor today said that perhaps we need to consider not ending his doses abruptly, but adding a couple of days of 1/2 doses, so that it isnt as hard on him.
The steroids can cause severe bone pain (in the past he has always felt it in his legs and jaw). They can also cause abrupt changes in blood pressure, as well as suppress his own hormonal functions (which can lead to nausea).
We are going to do some lab work to check his cortisol (hormone) levels, and see if that gives us any more info about this.
Since he will be getting these steroids every 5 days for the next 2 years...we want to get a handle on it. Additionally, and we need prayer for this....everyone has said that the effects of the steroids get worse each month. So please pray that we can find the remedy (if the steroids are indeed the problem).
Andrew felt better this evening....(although got a big dose of methotrexate tonight)....I hope he feels good tomorrow.
It may take us a bit of time to get the hang of maintenance....learning the side effects of the meds, and how to minimize them....
Otherwise, Andrew is feeling great...counting down to his birthday :)
Thanks for your continued prayers,
love,
Kim
Wednesday, October 13, 2004 2:20 AM CDT Hi Everyone,
Andrew had a trip to the ER tonight. He had a sudden onset of a severe headache, accompanied by vomiting. He also had pain in his shoulders, neck and hands. The doctors had us bring him to the ER where they did a CT scan and some blood tests.
His headache went away and the tests looked fine, so he is now home. They want us to bring him back to the oncology clinic tomorrow, just to check him out again.
For those praying as he went to the hospital last night, we appreciate your prayers! We are thankful to have so many faithful lifting Andrew up.
Please pray that this was a minor blip. We think it could have been brought on by some of his medications, that can cause drastic swings in his blood pressure (although that would cause headaches and vomiting, we arent sure what caused the neck,shoulder, hands pain).
Andrew has gone through so much, and his brain has gone through a lot too. The spinal chemos and cranial radiation can cause some problems....please pray that God continues to protect him from dangerous side effects for the rest of his life!
Andrew turns 4 next week.....he is starting to get excited about his birthday....for us it is another year with our baby, and one more reason to be thankful.
Love,
Kim
Friday, October 8, 2004 1:01 AM CDT Hi Everyone,
Andrew is now officially in Long Term Maintenance. He had his IV and spinal chemos on Wed., and is taking a few oral chemos each day, including high dose steroids.
Well, the "roid rage" has already begun! He is highly emotional, crying and screaming a lot. He also is generally feeling not up to par...you cant tell by looking at him, as he still is energetic, but he tires easily and is a bit cranky.
I dont know if the meds are hitting him so hard because he hasnt had any chemo in his system for over a month....or if I just got used to the past month of him feeling better without them. (did that make sense??)
Please pray that he would adjust to his meds, and not feel so yucky.
His hair is really starting to grow...and speaking of grow....his height shot up half an inch the month he was off chemo!! Let's pray he continues to grow....as he is still wearing 18-24 month pants (and he turns 4 in a week and a half.)
Andrew continues to love his tumble bees class. He is getting stronger every day and is having a lot of fun.
Andrew does not get his blood checked for two weeks.....and if all goes as planned, he wont have to go back to the clinic for a month!!
Thanks for all of your prayers.
Love,
Kim
Tuesday, October 5, 2004 11:54 PM CDT Hey Everyone,
First, (drum roll please...) we have finally arrived at Long Term Maintenance (LTM). Tomorrow Andrew will begin LTM, the day also marks Andrew's 14 month anniversary of his diagnosis with leukemia. It has been a long road, covered in prayers by our friends! This day seemed so far away to us, and now that it is here we are saying many "thank you's" to God for brining Andrew to LTM in good shape.
Tomorrow Andrew goes in for his first treatment in LTM, which will be spinal chemo (IT Methotrexate; tummy aches and nausea), and IV Vincristine (pain in legs and feet). He will get these once a month. He will also take Methotrexate and 6-MP orally every day. The first five days of each month, will be a "steroid pulse", meaning he gets decadron orally those first five days (hunger, swelling, and mood swings). We will continue this pattern for 2 years.
Andrew's 4th birthday is arriving, and as we celebrate this wonderful milestone, it is bittersweet. As we look back at his 3rd year of life, it really is not what we had planned for our baby. We had hoped that he would enjoy fun toddler things like playgroups and riding his bike, swimming and gymnastics...with all of his skills of independence emerging. Instead, he endured more pain and torture than many of us ever face in our lifetime. He learned medical procedures and terminology that should be reserved for physicians.
But God has remained triumphant. We do not believe Andrew's leukemia was part of God's plan, not at all....we believe God hates cancer more than we do. Yet, God took what the devil meant for harm, and was able to use it for good...as only He can! God brought Andrew into remission, and has kept him there. He held Andrew in His arms, minimizing the side effects and protecting him during this vulnerable time. Andrew is a very confident and strong boy. He has developed the ability to face challenges with determination. I have no doubt that he can take on whatever comes his way in life. He went through this past year with laughter and energy, even amidst pain.
Thanks to all of you for keeping Andrew in your prayers as he went through the "intensive" phase of treatment. Please continue to pray for him as he goes through LTM.
and now....a CHOC Walk update!!
THANK YOU!! We had so many people come out and join "Andrew's Team". With over 300 walkers, we raised more than $33,000. All of the donations go to Children's Hospital of Orange County. We are fortunate to have this specialized hospital in our community. They provide a variety of services to children; cardiac care, neonatal unit, physical rehabilitation, oncology clinic...and much, much more! We are grateful to all of you who walked or sponsored a walker.....your generousity will touch children throughout Orange County!!
Love,
Kim
Wednesday, September 29, 2004 5:23 PM CDT Hi Everyone,
The good news about Andrew, is he feels good. The not so great news (it's not bad, just not so great) is that his counts still have not recovered. We were scheduled to begin Late Term Maintenance tomorrow, but once again, his body just isnt ready.
It is very important that we keep the chemo in Andrew....he needs his treatments to continue. Please pray that his body begins to strengthen so that he can move forward with his medications.
We are looking forward to a fun weekend, as it is finally CHOC WALK TIME!! Andrew has been looking forward to the walk, which takes place at Disneyland, and we have decided to make a mini vacation out of it...staying a couple nights. Perfect timing, as Christine has recently become a Minnie fan! I know both of the kids will have a great time, Ill report back with pictures next week.
And as for the walk.....Thanks so much for supporting Andrew's Team. It looks like we have a real shot at winning the brick for Andrew this year...so thanks to many of you that are walking or have supported a team walker!! The brick, which will be placed out in front of the hospital, is a reminder that all of you have been supporting Andrew through this fight....through prayers and love! If you still want to donate....go to www.chocwalk.org Click on Register online (you will not be registering, but need to do this to support a walker)...then click "support a walker"...and Andrew's ID is "andrew"
Thanks for praying for our friend, John Taggart.... I know his family appreciates all your love and support too!
Love,
Kim
Sunday, September 26, 2004 0:25 AM CDT Hi Everyone,
Andrew is enjoying his new life. Restaurants, grocery stores, Chuckee Cheese, Sunday School, Gymnastics.....he is loving it all!!
Thanks for your prayers, we are so thrilled to see Andrew doing regular kid things again!
We did Andrew's labs on Friday, and his counts are still very low, and the "long term maintenance" phase of treatment is still on hold. His bone marrow aspirate earlier in the week assures us that he has not relapsed, and his mrd test results came in, affirming that Andrew is in remission. YEAH!! Thanks so much for all of your prayers, and we thank God for bringing Andrew through this past year.
Please pray that he can start maintenance soon....his body still needs the chemo to continue with remission, and we dont want to see any more delays.
Our friend John Taggart had a difficult weekend, please keep him and his family in your prayers...they have some very hard decisions ahead of them, and need a lot of prayers for direction as well as for John's healing. His website is www.caringbridge.org/ca/johntaggart
We also want to thank all of you who will be joining us at the CHOC Walk in the Park, to support Children's Hospital next weekend. We have over 225 walkers, and have raised over $20,000 thus far!! Way to go everyone!! There are many kids like Andrew and John who depend on CHOC....your support is greatly appreciated!
Finally, a huge Congratulations to our friend Olivia! Olivia was one of the dear 5th Graders from Las Flores Elementary School who took it upon herself to raise money for the Leukemia and Lymphoma Society in honor of Andrew. We arent the only ones that think she is terrific, as today she was awarded the CHOC Community Service Award for her philanthropic activities. We are very proud of the young girl that Olivia is, and are blessed to have her as our friend. I know that she is growing into the type of person who will make a big difference in her world.
Love,
Kim
Friday, September 24, 2004 0:48 AM CDT Dear Friends,
Thanks so much for your prayers and encouragement. We are thankful that Andrew is feeling well and that God is continuing the healing process. Andrew will have his counts checked tomorrow, to see if he is ready to start his maintenance chemo. Please pray that his counts have recovered.
On Monday, when they did his bone marrow aspirate, they also did an mrd test(minimal residual disease). This test should be able to give us more precise information, assuring us that the leukemia is still in remission. Please pray for the outcome of this test to affirm that Andrew is indeed in clinical remission.
Many people ask us why Andrew needs treatment if he is in remission. The cancer is in Andrew's blood, and since we cant completely get rid of his blood (like we would a tumor)...we need to keep treating it. Leukemia can be one little cell that then multiplies out of control. Leukemia is able to hide out in the spinal fluid, brain and other areas...so it is necessary to continue treating it so that all leukemic cells are destroyed. Research shows that it is necessary to continue chemotherapy for 2+ years, in addition to the year of intense treatment that Andrew just finished. Our prayer is that throughout treatment, every last bit of the leukemia will be removed.
The CHOC Walk in the Park is fast approaching....Sunday, October 3rd. Thanks to so many of you for walking with us and supporting Andrew and all the kids at CHOC.
One of our friends at CHOC, John Taggart, has received very difficult news. His neuroblastoma (cancerous tumours) has relapsed. Additionally, it has moved into the brain, which offers a very poor prognosis (medically)...but we know that all things are possible with God. John has wonderful parents that are lifting John up for healing.....God has heard the cries of a parent before...He has healed the very sick, and even raised the dead.....please join with us in asking God to heal little John completely!! Please leave his parents a note, letting them know that you are praying for them....this is a very difficult time for them, and to have the encouragement and support from others will help to reassure them that there is hope in the power of Christ when believers come together in prayer. His website is www.caringbridge.org/ca/johntaggart
Love,
Kim
Monday, September 20, 2004 7:54 PM CDT Dear Friends and Family,
Thanks so much for all of your prayers, calls and emails. We just received the good news from Andrew's oncologist, that he has not relapsed, but his marrow is tired, and therefore recovering slowly.
Leukemia goes into remission quickly (usually within a week), but the treatment lasts years, because there is always a risk of relapse. For kids with Andrew's type of leukemia (t-cell ALL) the risk of relapse is high. So, the thought of relapse never really leaves the back of your mind.
When the doctor called Friday, I knew there was a problem, as usually it is the nurse that calls. When she said his counts made her suspect he could have relapsed, all the fears came rushing forward. A relapse for Andrew would be very dire, something we never want to face.
It was hard spending the weekend thinking that our worst fear might have happened, but I want to thank you for the calls and emails, support and prayers.....the comfort we received from friends made this weekend easier, knowing that God was in control and we were not alone.
Andrew's counts are still low, but we pray that they improve soon, so he can continue with his maintenance chemotherapy.
Love,
Kim
Friday, September 17, 2004 5:31 PM CDT Dear Friends and Family,
My little Tumble Bee is enjoying life, feeling pretty good (some leg pain and tummy aches) but otherwise happy as a, well, as a tumble bee!
We did his labs today, and his blood counts are still very low. The doctor called to let us know that we will not be able to start Maintenance chemo on Monday, but they would still like us to come in. Andrew will have a bone marrow aspirate, and they will use it for his mrd testing, as well as to rule out a relapse.
His low counts are most likely due to his marrow being "tired" from all of the chemo over this past year, however they do need to rule out that it isnt from a return of the leukemia.
Please pray that his marrow will be clear, also pray that the test itself goes well.....it is a coring needle into the bone in his back....he is sedated, but still awake, and it is very painful.
We are looking forward to the CHOC Walk, as well as some fun activities.....
Krispy Kreme Doughnut Fundraiser....order your doughnuts ($8 per dozen) and pick them up at the Avendale Clubhouse parking lot at 9am on Saturday, September 25th. Email jglatt@poweredge.com with your order.
Cosmos Italian Kitchen ~ CHOC Walk Team Kick Off Dinner.....Eat at Cosmos, Oso and Antonio in Mission Viejo....take out welcome. You will need a flier....print one from the link at the bottom of this page.
Thanks for your prayers,
Love,
Kim
Thursday, September 16, 2004 0:01 AM CDT Hi Everyone,
Sorry we havent updated recently, but it has been a busy week.
The family spent the weekend in Los Angeles, while Heidi and I participated in the LA Triathlon. We were part of the Leukemia and Lymphoma Society's Team in Training....and collectively the Team raised over $300,000 for blood cancer research. Thanks to so many of you for financially supporting us, and for giving hope to those battling leukemia & lymphomas.
We are gearing up for the CHOC Walk in the Park, which benefits Children's Hospital of Orange County. The walk is in less than 3 weeks, and the frenzy of getting everything together is upon us.....we have an awesome team, with over 200 walkers and have raised over $15,000 so far. Thanks to those of you that are walking or supporting us....we really appreciate it.
Now, for the really great news......Andrew is not officially in maintenance, as his counts continue to be low. They are rising, but just doing so at their own leisurely pace. For that reason, his initial maintenance chemo has been postponed until next week.
That wasnt the good news though...the good news, is that with his counts climbing a bit, I went ahead and did let him start his "maintenance" activities. He started gymnastics, as did Christine. He had a blast and was so excited to run around and have fun with other kids. He is in a class called the "tumble bees" and it is all he is talking about!
He also went to McDonalds play land today for lunch...again....he was on cloud 9, running around, playing and laughing. It was really good to see him being a kid again.
He even got to go to the grocery store...he hasnt done that in over a year.
The past two days he keeps saying, "thank you mommy for taking me to mcdonalds (or tumble bees, or the grocery store)." He is so grateful to be able to do these things again and it has been so moving to see him so happy and carefree.
We will return to our church on Sunday, for the first time since he was diagnosed. We are all very thankful to be able to join our friends at Sandals.
As we move on to this new "phase" of treatment, please continue to keep Andrew in your prayers. He still has more than two years of chemotherapy to go....it is not easy, he will still feel sick, he is still susceptible to illness (although not as much, and if he does get sick, postponing his treatment wont pose the same threat of relapse.) We also need prayers to keep him in remission.
We are so thankful for all the support you have shown us this past year. The Lord has brought us through a very dark valley, and so many of you were like lights, brightening our path.
Please also pray for a very sweet boy, John Taggart. He has neuroblastoma, and his family just found out that the cancer has returned. You can visit his website at www.caringbridge.org/ca/johntaggart Even though you dont know John, please leave a message to let his family know you are praying for him. A message in a guestbook may seem insignificant to most of you, but I promise, that during difficult times, you are often sustained on the words of encouragement from others.
Love,
Kim
Friday, September 10, 2004 10:56 PM CDT Hi Everyone,
We are preparing to leave for the weekend, going to stay in Los Angeles while Kim and Heidi do their Triathlon for the Leukemia and Lymphoma Society.
It is so inspiring to participate in an event, with so many others who have raised money for blood cancer research.
Andrew's blood levels are fine, but his immune level is still very low :0 This means he will spend most of his time in the car....driving around looking for mom in the race....and when not in the car, will need to wear his mask.
Please pray that his immune levels rise, so that he can begin maintenance next week (which will include his mrd testing).
We will write (and have new photos) when we return!
If you have not yet registered for the CHOC Walk, please do so asap. We will be ordering our team shirts on Tuesday, and I would love to get the most accurate count.
Love,
Kim
Wednesday, September 8, 2004 2:10 PM CDT Hi Everyone,
Andrew is feeling pretty good, not much pain. He is very tired. He will be running around full of energy one minute, and then nap for several hours.
His immune level continues to be very low, and the doctors are postponing his test (bma for mrd test) and the beginning of his maintenance chemo (lp) until at least next week.
Some of you may have seen Andrew and Doug's picture in the latest Team in Training brochure....they were mailed out to households across the country recently, and the picture of the two of them crossing the finish line at Doug's Tahoe bike ride was featured. He looks so much better now than he did in that picture. That picture was when he had a feeding tube, had lost 25% of his body weight, and had been fighting fevers for several weeks. Check out the photo section to see how much better he looks now! (just 3 months later)
Speaking of Team in Training.....our household is gearing up for another "event"....this time it is not Doug, but Kim and Heidi (our nanny). Kim and Heidi will be doing the Los Angeles Triathlon this weekend (.9 mile ocean swim, 24 mile bike ride, 6 mile run).....if you are local, you can watch the race on channel 9 (KCAL)....however, unless the announcers get funny and show you the "last" stragglers crawling in...you probably wont see us.
You can check out Heidi in her wetsuit in the photo section.
Also, thanks to everyone for registering for the CHOC Walk and for supporting those that are walking.....we have climbed to over $10,000 for Children's Hospital, and hope to raise even more!
Love,
Kim
Monday, September 6, 2004 11:11 PM CDT Dear Friends and Family,
We hope you all enjoyed this past weekend. Our prayers go out to those of you in Florida, especially Uncle Mike, Aunt Jacque and Cousin Taylor...we hope you are safe!
It has been hot here, beautiful but hot.
Andrew has continued to do well. He is tired a lot and sleeps off and on throughout the day, but when he is awake he is in good spirits.
He is scheduled to begin Long Term Maintenance tomorrow, which includes an LP (spinal chemo). We also have scheduled to do a bone marrow aspirate (bma) tomorrow(a coring needle into his his low back, which takes a sample of the inside of his bone, checking for leukemic cells.) The purpose of the bma, is to make sure that his marrow is still in remission.
I did Andrew's blood counts today, but due to the holiday, wont get the results until the morning. I have a feeling that they will still be very low, which means the maintenance chemo will be postponed. I dont know if they will also postpone the bma, I will call in the morning and find out.
Please pray for Andrew as he undergoes these procedures. They are extremely painful. Also, pray that they show continued remission from the leukemia.
We want to thank all of you that have signed up for the choc walk team, supported a walker, or attended one of the fundraisers. We are fortunate enough to live in a community that cares, and to be surrounded by generous friends and family. Many of the children at the hospital do not have the support that we have, and we want you to know that when you support us, you are also supporting many other children that are going through a hard time.
Love,
Kim
Saturday, September 4, 2004 1:04 AM CDT Hi Everyone,
Andrew is doing pretty good. You would never know that his body has just been thrashed with chemo. He is energetic and happy, relatively few physical complaints. (although he did fall asleep before dinner tonight, and never woke back up.)
His immune level has dropped way down again (it is expected). This means we will be quarantined.....it also means that I doubt he will be starting maintenance next week. They want to see his immune level come up out of the critical range, and I dont foresee that happening by next Tuesday (our schedule maintenance day)...but I will do his labs again on Monday to see how things look.
Thanks to the transfusion this past week, his hemoglobin and platelettes are fine.
On the fundraising front....a huge thanks to Debbie and Dana from the Tinkerbell Guild of CHOC, as they organized the Islands fundraiser in Foothill Ranch this past week, and it was very successful. Thanks also to all of you that came out or passed along the flier....it means a lot to us to have your support.
You are all invited to walk with us in the CHOC Walk, Sunday October 3rd, the walk is in the early morning at 7am, and will be done by 9am. It is a fun walk through Disneyland, and Andrew is very excited to see Mickey Mouse (finally!)
Please sign up asap, as we are ordering team shirts. Go to www.chocwalk.org, and "register online" register as a team walker, and choose "andrew's team"
Tomorrow, Grandma J will come over to celebrate her birthday. We were getting our blood transfusion on her real birthday, but tomorrow night we will finally get to see her and help her blow out ALL her candles!!
love,
Kim
Wednesday, September 1, 2004 1:41 AM CDT Hi Everyone,
Thanks to all of you who went to Islands, and special thanks to Debbie and Dana for putting the event together. The Children of CHOC are lucky to have so many great people supporting them.
Andrew's blood counts are still low, and tonight we went in for a transfusion. THANKS TO THE WHOLE BLOOD DONOR , I forgot to look at the donor# on the tag, but I think you gave end of July, beginning of August....by the way, I have never seen such a gorgeous, deep ruby color of blood!!
During our stay, Andrew was goofing around on the bed, and took a head first dive onto the floor (accidentally). He has a huge bump on the top of his forehead, and his nose began to bleed...it freaked us out. Luckily, his platelettes are up a bit.
He seems to be ok....you know, the symptoms for low blood counts include lethargy and low oxygen...yet Andrew was boppin' around like a wild indian all night! Your prayers hard at work!
I always wonder why we have to go to the hospital, "why now God, who will we see tonight?"
Well, tonight, we saw Omar. We havent seen Omar in almost a year. We spent a lot of time with him the first month after Andrew was diagnosed, and he and his mother were so sweet and encouraging to us. We were so afraid, but they always prayed with us, reminding us to trust God. It's not a good sign when you see a family that has been away for some time.....his mother confirmed it, Omar has relapsed. Please keep him in your prayers. He is a very nice teen boy. He will be spending the next few months preparing for a transplant...his brother is a match. Transplant is not easy!! It is risky in it's own right, and those that make it are left with lots of long term effects....so please pray for Omar!
We also met a new family, and we have mutual friends! The mother is Aurora, and her son Taylor (age 15) was just diagnosed with Leukemia. Please keep them in your prayers too.
I was able to visit Andrew's friend Gregory. Please pray for Gregory!! He has battled long and hard, and it really broke my heart to see him tonight. He has a new trach, and the poor baby was uncomfortable trying to breathe out of it or something.....please ask God to heal him, and to comfort his family. You can visit him at www.gregoryconklin.org
Thanks for following Andrew on his journey, and praying for him. We read our guestbook entries every night, before we say our prayers. If you havent signed in a while, he would enjoy hearing from you (I would too.)
Love,
Kim
Tuesday, August 31, 2004 10:54 AM CDT Happy Birthday Grandma J! Grandma J has stayed by Andrew's side during this past year, always bringing him special treats and prizes, always making him smile. Today is your birthday and we hope it is the best ever!! Happy Birthday Grandma!
Hooray! Andrew has completed a very intensive 13 month treatment plan....he was a trooper the entire time! He never complains about the 2 IV's hanging out his chest, he didnt even mind the feeding tube in his nose. Being nauseated and in pain never kept him down, his energy and strength has been such an inspiration.
The next 2.5 years will not be easy either, but I know that with all of your prayers, God will keep Andrew strong.
If you are in the area, please consider eating at Islands in Foothill Ranch, as 20% of the proceeds will go the our CHOC Walk Team. You can print a flier off a link at the bottom of this page, flier must be presented for the fundraiser.
As soon as Andrew's blood counts recover, we will be able to rejoin regular life. We have signed him up for gymnastics (he was supposed to start a year ago, and was diagnosed the day before his first class). He is very excited and has been doing somersaults around the house the past few weeks!
We are looking forward to the simple things, like going to the grocery store, the mall, and restaurants. Attending church again is at the top of our list.
Thanks for continuing to pray for Andrew, we appreciate all of your support.
Love,
Kim
Sunday, August 29, 2004 2:02 PM CDT Hi Everyone,
Tomorrow will be Andrew's final dose of chemo for this intensive phase. Leukemia has the longest treatment protocols of any cancer, and Andrew was given the strongest and longest plan. Many of our friends with leukemia were diagnosed after Andrew, and have been on maintenance already....so we are relieved to finally be going to maintenance too.
Many of you have asked what LTM (long term maintenance)is.....yes, he will still get chemotherapy. He will take 2 oral chemos every day. He will take a 3rd oral chemo 1 week out of the month. He will still get an IV infusion of chemo once a month, and spinal (IT, intrathecal) chemo once a month. This phase will last for more than 2 years.
Currently, Andrew's immune level is very low, and he is not allowed to be around people. His blood counts are also low, and we expect blood and platelette transfusions in the next couple of weeks.
His counts should start to come up in a few weeks, and at that time, he can start maintenance.
The purpose of maintenance is to lower his blood counts (and immune level) to a certain level. Ideally, they will be supressed, but not critical. It may take some time (a few months) to get his chemo dosages adjusted, so that his blood levels stay within the target range. They will keep changing his med doses as needed, to keep his counts where they want them. Please pray that this process is done quickly and easily, as the sooner they get them stable, the sooner we can return to "normal" life and rejoin society. (we do know some kids that have taken months, if not all of their years of maintenance, trying to get the balance right....with crashing blood counts, transfusions, critically low immune levels.) We appreciate your prayers on this matter (and hope this wasnt too confusing)
People have also asked us if this means Andrew is now cured. From a medical standpoint, studies show that if we stopped all chemo now, the leukemia would return, which is why it is necessary for him to continue treatment for 2 years. Andrew's t-cell type of leukemia is also known to have more incidence of relapse, and relapses tend to occur during maintenance (when the chemo doses are lower), or when they go off treatment (when there is no more chemo). Andrew will be at a higher risk for getting leukemia until he has been off treatment for 10 years. So when he is 16, his chance of getting this type of leukemia will be the same as everyone else. (he will always be at increased risk for other types of leukemia and other cancers, due to his treatment) Not to sound doom and gloomy about all of this, as we are optimistic about the healing God has done in Andrew, but he still is in great need of prayers.
On the fun side of things.........the ladies of Tinkerbell Guild are hosting another fundraiser at Islands Restaurant in FOOTHILL RANCH THIS TUESDAY, AUGUST 31. If you are in the area, or know of anyone living in the area....please come out and support Children's Hospital. YOU WILL NEED A FLIER, and there is a link at the bottom of this page. Everyone needs to eat (and our family highly recommends the cheese fries)....so make those calories count, and eat at Islands :)
Our CHOC Walk team is really growing!! If you plan on joining us, the sooner the better. We are ordering team shirts in a couple of weeks, and it helps us to get an accurate count. Also...I will be picking up your walk bracelets (you need this to get in to the walk), your CHOC shirts, and your prizes (so many of you are earning prizes!)...I will pick all of these up for you a week or so before the walk, and then have "pick up" points (if you work with Grandma J, she will have them, if you are from a TNT team, we will bring them to practice, Ladera locals will have a clubhouse pickup )...all of these dates will be determined later, but it is a huge help for us to coordinate if you register early. :)
Thanks for your prayers and your continued support!
Love,
Kim
Wednesday, August 25, 2004 11:26 PM CDT Hi Everyone,
Thanks so much to all of you locals that ate at Islands this past Tuesday. The Tinkerbell Guild (our local group of women that raise money for Children's Hospital of Orange County) have a string of fundraisers planned...and this first one was a huge success! Special thanks to Amy and Laura who were the organizers.
Our CHOC Walk team is really growing!! If you plan on joining us, the sooner the better. We are ordering team shirts in a couple of weeks, and it helps us to get an accurate count. Also...I will be picking up your walk bracelets (you need this to get in to the walk), your CHOC shirts, and your prizes (so many of you are earning prizes!)...I will pick all of these up for you a week or so before the walk, and then have "pick up" points (if you work with Grandma J, she will have them, if you are from a TNT team, we will bring them to practice, Ladera locals will have a clubhouse pickup )...all of these dates will be determined later, but it is a huge help for us to coordinate if you register early. :)
Now for some great news.......(drum roll)....Andrew will receive his final dose of chemo for the intensive phase of treatment this next Monday!! These last 13 months have been hard, but not harder on anyone than Andrew himself. He has stayed strong! He has stayed in remission! We KNOW this is from all of your prayers...so thank you!!
His blood counts are very low....his ANC is critical right now so we are on strict quarantine. I expect (if that is possible)...I am *guessing* that he will need platelettes tomorrow. He is covered in bruises, and we knew his counts were on their way down.
Remember, chemo is designed to keep his counts "wiped out"...so, it is a good thing that they are low right now. He will get to start maintenance as soon as he "recovers" from this current round of chemo (guessing in a few weeks).
Please continue to pray, he needs to be protected in maintenance...as when the chemo doses are lowered, the body is more susceptible for relapse.
love,
Kim
Sunday, August 22, 2004 8:39 PM CDT Hello Everyone,
We returned from Doug's Team In Training bike ride this evening. Yes, this was his second 100 mile ride raising money for the Leukemia and Lymphoma Society. "Cool Breeze" was an appropriate title for the event, as the slight coastal mist kept the athletes from getting too hot as they peddled.
While we were there, they showed us the new TNT brochure for the upcoming season, and the picture of Doug and Andrew crossing the finish line is featured! It includes a word from Doug, about the inspiring program that is helping to find a cure for blood cancers. Really cool!
The ride....just beautiful (remember, my point of view is from a comfortable car seat, not a bike, hee hee!) They went through vineyards, along the ocean route of highway 101, and through the twisting turning hills of Montecito (gorgeous Santa Barbara area) (By the way, for those not from the West Coast, this was a beach area about an hour north of Los Angeles). The hills proved to be tough (I thought this was supposed to be a "flat" course?), but every single TNT rider made it!
The Team....these people are just the best! They rode in memory of friends and family that lost the battle with blood cancers, in honor of so many who are still fighting, and with the tenacity of those that beat the disease and are living healthy lives. One special rider, Gena Marie, finished her first Century ride with great strength. We cant forget to tell you about coach Lesa! She is wonderful, and season after season she trains riders....and keeps them coming back for more rides (which includes more fundraising, and gets us closer to a cure!)
Andrew adores his TNT heroes. He thinks they are really fun people that like to spoil him with attention. One day when he is older, he will realize that they were much more than that, as they were working hard to make sure he survives!
Ill try to get some pictures up (just after I catch my breath).
If you think training for a marathon, triathlon or century ride sounds like fun (ok, maybe not fun, but a great personal accomplishment, or a way to get in shape- but it is fun too)...TNT is for you. It is the largest sports training program in the country. Each team has coaches and mentors, to give you the best training as well as encouragement. It is geared towards the beginner (they start off easy and build up). You are with a team, so you have lots of support and comradarie to help you stay committed. TNT is all over the country.....let me know if you want more info.
Now for an update on Andrew.....THANKS FOR YOUR PRAYERS. He felt pretty good, no fevers! The vomitting was under control and he ate pretty well too!! He really enjoyed the weekend. He goes back tomorrow for Vincristine (joint pain and trouble walking) and 2 peg shots (deep into the muscles of his thighs). We will recheck his blood counts, and will not be surprised if he needs a transfusion.
We are excited about "Andrew's Team" in the upcoming CHOC Walk. The Tinkerbell Guild is a local group of women that raise money for the hospital, and they are hosting the team. We hope you locals can join us!
There will be a fundraiser for Andrew's Team this Tuesday, as Islands Restaurant (Kaleidescope in Mission Viejo) will be generously donating 20% of the proceeds to CHOC for Andrew's Team. If you live nearby, please consider coming by for dinner (or take out) between 4-10pm. YOU WILL NEED A FLIER, and there is a link for a flier to print off at the bottom of this page. Please send it to family and friends in the area ...everyone has to eat, let's make it worthwhile.
Big thanks to the ladies in Tinkerbell Guild, especially Amy and Laura, for putting the Islands fundraiser together.
Love,
Kim
Wednesday, August 18, 2004 1:31 AM CDT Thursday Night update....
We are planning to leave for Ventura in the morning. Thankfully, Andrew is holding strong. He was throwing up this morning, but seems to be feeling better this afternoon. His immune level is very low (making him susceptible to illness and fevers) please pray for our safety while we are gone.
PLEASE PRAY for our friend Gregory, he has had such a rough time of things, and is once again in intensive care. His website is www.gregoryconklin.org
Love,
Kim
Wednesday, August 18, 2004 1:31 AM CDT
Hi Everyone,
First...a big THANKS to the guys at Der Weinerschnitzel. They got wind of Andrew's chili cheese fries cravings, and sent a box of goodies (lots of toys, stuffed hot dogs, cards, gift certificates, etc.) He was soooo excited to get the package from them today, and has spent all evening playing with the goodies.
We are also grateful to our church friends at Sandals for bringing us meals this week, as we go to the clinic for chemo each day. It has been so nice to come home and not have to worry about dinner (and not have to eat fast food!) You girls are all such great cooks....and you have been so wonderful to us!
On the chemo front, Andrew has remained incredibly strong and fever free! We have had long days at the clinic Monday and Tuesday (just way too many kids with cancer!), we are hoping Wednesday and Thursday dont take as long.
The chemos that Andrew is taking everyday is ara-c and 6tg which are both anti-metabolites. Cells need to repair themselves and multiply....these anti-metabolites stop them from making and creating DNA. The purpose is to stop the replication of the cancer cells, but the drug has the effect on all of Andrew's cells. The result is tiredness, nausea, achiness, and a drop in his blood counts. We expect Andrew to need platelettes within the next few days.
Which brings up another topic.....Doug is going to be doing another 100 mile bike ride this weekend, in Ventura County, with the money raised going to the Leukemia and Lymphoma Society. It is so hard to plan Andrew's treatment, and we didnt expect that this low point in his blood counts would coincide with our trip for the bike ride.
It is hard to pinpoint when he will need platelettes, but my best guess, is over the weekend when we are gone. Im hoping that they drop enough by Thursday, so that we can get a transfusion Friday before we leave.
Please pray for Andrew to remain strong and fever free while we are in Ventura, and for Doug to remain safe and strong on his bike ride.
Andrew enjoys being part of the Leukemia and Lymphoma Society's Team In Training program. The outdoor events & riding in the car cheering on the cyclists, are both things that are fun for him...and they are both things he can do without being at risk (he cant be inside with people, as his low immune level puts him at risk at getting sick.)
Thanks for all of your prayers and support. We are encouraged by your emails and notes in the guestbook, they remind us that we are not alone as we go through this.
Love,
Kim
Sunday, August 15, 2004 12:32 AM CDT Dear Family and Friends,
Last week marked the one year anniversary of Andrew's diagnosis with leukemia. Today marks his one year anniversary of being in remission.
(here is a quick leukemia lesson)
When people think of "remission" most people think of the cancer being all gone. Most cancers are tumors. Chemotherapy, radiation and surgery are used to shrink and remove tumors. When the tumor (cancer) is all gone, the person is said to be in remission.
Leukemia, being cancer of the blood, actually goes into remission quicker than other cancers. Chemotherapy is used to supress the body from creating blood products, and wiping out the existing blood supply (this is why blood donations are so important, as the patient relies on blood transfusions.)
Leukemia is made up of "blasts" or immature blood cells. In most people, those immature cells develop to form blood products. With leukemia, the immature cells go crazy, with rapid multiplication. The bone marrow (where blood is created) becomes filled with these blasts...that then circulate throughout the blood stream. They overcrowd the marrow and blood stream, making it impossible for mature blood cells (red blood, platelettes, etc.) to grow.
Most leukemia patients are in remission within a week. While they go into remission quicker than most cancers, they have the longest frontline treatment plan. Andrew's plan consists of radiation (to kill blasts hiding in the brain) and chemotherapy for almost 4 years!
Research shows that there are still blasts in his system, but they are hard to find. If we were to stop his therapy sooner, the little blasts would quickly multiply and his cancer would return (relapse).
So, while he is doing well with treatment, he is not "out of the woods" and it is necessary for his treatment to continue (and for prayers to continue). His type of leukemia is aggressive, and it has a higher relapse rate than most childhood leukemias, so even after his four years of treatment, we will need to continue to pray for his healing.
Now back to one year ago......I mentioned that most leukemia patients are in remission within a week. That is a very important part of beating this disease. It is necessary for the leukemia to respond to the treatment and be wiped out within the first 7 days.
You may remember, that during the first week, we did daily blood work. On Andrew's first day, 92f his blood was leukemia. Each day, we saw that number get less and less, but then on the 4th day, the numbers started to go back up. On the 6th day, the leukemia had increased back up to 34nd the doctors told us that Andrew was not responding to the treatment, and that his prognosis would be poor.
We were so sad on that day, and we asked you all to pray. They were going to do a bone marrow aspirate on the following day (friday, august 15th) and we needed a miracle to show that the cancer was gone. The doctor did not think that would happen, but God had another plan.
On Friday, August 15th, our doctor told us, "the Lord is good" and she said that Andrew was in remission.
That was the first of many miracles that we have seen this past year. We know that hundreds of you pray for Andrew each day, keeping him strong, keeping him in remission. God is hearing your prayers, just as he did that Thursday night. Please continue to pray, and know that God is hearing you.
Andrew will go back for chemo M, T, W, Th of this week. He is feeling good right now, but we expect him to get more worn down each day. There is also the strong possibility that he will start getting fevers again (which puts us in the hospital). Please pray that he wont get any fevers, and that he will go through this next phase with great strength and protection.
Love,
Kim
Friday, August 13, 2004 0:42 AM CDT Hi Everyone,
We arrived home from the hospital Thursday evening. Andrew got a blood transfusion before we left. We also found out he has c-diff again (a very contagious bacteria in the digestive tract, which causes cramping and diarrhea....it is caused by overuse of antibiotics.)
We are hoping to have some rest and relaxation, as next week we have another 4 days of chemo (but hopefully will not end up spending those inpatient!)
Thanks for all of your prayer, they are really helping carry us through these exhausting and emotional times.
I want to thank so many of you for joining Andrew's Team in the CHOC Walk. The purpose is to raise money for the hospital, but it is also very personal to us, as we would like to raise enough money to earn Andrew a brick with his team name out in front of the hospital, a reminder that so many have prayed, cared, donated money, donated toys, given blood, and loved us during this past difficult year. So for those that have joined Andrew's Team...thanks!
Love,
Kim
Wednesday, August 11, 2004 1:27 PM CDT Hi Everyone,
Thanks for keeping us in your prayers. Christine is feeling much better, she seems to be over her fever/vomitting bug.
Andrew is feeling better too, however they want to keep us in the hospital a bit longer. He is getting more chemo today and tomorrow, and the doctor would like him to stay in the hospital while he gets it, just to make sure he doesnt get another fever.
We are hoping to go home tomorrow (Thursday), and will update you at that time.
Love,
Kim
Monday, August 9, 2004 10:57 PM CDT Dear Friends and Family,
It is Monday night, and Andrew's chemo is expected to finish just after midnight. This is pretty quick for him! They gave him some extra IV fluids and lasix, and it seemed to help with his hydration. That is the good news.
The not-so-great news, is that he is now running a fever! This could be from one of his chemos (ara-c) that is known to cause fevers. Unfortunately, they dont take any chances, and we have now earned an extra 24 hours (at least) in the hospital :0
Additionally, he could have a fever because he caught whatever bug Christine has (she is at home with a fever and vomitting..started this morning and she is still sick.)
Maybe it is just as well that we are here, so he doesnt go home and get Christine's illness, if he doesnt have it already. I keep these kids darn near in a bubble...I dont know how in the world she got sick!!
Please continue your prayers, that everyone recovers quickly so we can all go back to "normal"
Love,
Kim
Monday, August 9, 2004 12:19 AM CDT Hi Everyone,
Andrew is going in this morning to begin his next phase. He will be getting a spinal, as well as 3 other chemos, and staying overnight.
Also, Christine woke up this morning feeling ill, she had thrown up in her bed. Please pray for her to get better, especially since we dont want Andrew to be exposed to her when sick.
We appreciate your prayers, asking God to keep them both strong and healthy as we go through this next round of treatment.
Thanks,
Love,
Kim
Friday, August 6, 2004 0:49 AM CDT Today's date will always be etched in our mind,....one year ago, the day that started out normally, going to the neighborhood water park, and ended in a hospital with an IV pole and a diagnosis of cancer.
I dont really know what else to say. Andrew has gone through more than a little boy should have to endure. The medicine, side effects, spinals, surgeries, radiation, pills, vomitting, shots, bone pain......no swimming, no gymboree, no parties, and little time with friends....it's not the life you plan for a 3 year old.
We know this past year has been a gift, and we know that so many are praying, as we have been witness to many good works of God in our life...but it has been at a very high price.
Thank you for continuing to pray for Andrew. He has nearly 3 years left of treatment, so please keep asking God to heal him.
Love,
Kim
Tuesday, August 3, 2004 0:05 AM CDT Hi Everyone,
Andrew's labs came back, and his counts are a little low.
Here's a little lesson on blood counts.....we look for platelettes, hemoglobin and hematocrit, which are low, but not low enough for a transfusion - That is good news!
We also look at his "absolute neutrophil count" or ANC for short. This is his "immune level" if you will. It's calculated from a few different types of cells, and tell us if he is able to ward of infections and such. Right now, his anc is very, very low.
For this reason, they are postponing his chemo this week. They want to give his body a chance to perk back up....they cant hit him too hard when he is down. We will redo his labs next Monday, and if they look better, he will start this next (and final intensive phase) next Tuesday.
Andrew's hair is starting to grow back. We expect it to fall out again, but in the meantime, it's nice to see his spikey blonde do.
The childhood cancer world lost another fighter yesterday. Many of you may know about Alex, who started her own lemonade stands at the age of 4, and raised nearly a million dollars for childhood cancers. You can read her story; www.caringbridge.org/page/alexscott
Love,
Kim
Sunday, August 1, 2004 0:48 AM CDT Hi Everyone,
We returned home from the hospital Saturday afternoon. Andrew's headache and vomitting ended as suddenly as it began. We arent sure what it was, as the CT Scan was normal (thanks so much for praying!)
Our guess, is that the steroids could have been causing some issues with high blood pressure (the first few readings at the hospital were high, but then came down).
He is scheduled for a spinal on Tuesday, so we didnt give him one in the hospital.
Please pray for Tuesday (that his counts are high enough to begin this round without delay)...that he handles the chemo well, and that he continues to be in remission.
Andrew was lucky enough to take a new blanket to the hospital. A neighbor girl, Shana, and her grandmother made the quilt the other day and brought it over. It sure adds a loving touch to a hospital bed! Thanks Shana and Nancy!
Thanks for all of your prayers,
Love,
Kim
Saturday, July 31, 2004 9:58 AM CDT Dear Family and Friends,
Andrew is back in the hospital.
Yesterday, I had planned to have CHOCO the Bear (hospital mascot) come to our community concert in the park. (we were promoting an upcoming event that I will tell you more about later.....)
I was there setting up, and Doug was going to get a bucket of chicken and bring the kids. We love the concerts in the park, as Andrew can run around and dance in the fresh air, and Christine loves it too.
Doug called as they were preparing to come, and told me Andrew began screaming, out of the blue, that his head hurt really bad. (He has never really had a headache, and not something that made him scream.) He began throwing up too. So, while I was at the concert, I was calling the oncologist making arrangements to come to the hospital. Andrew, in the midst of screaming and throwing up, was crying because he would not get to come and see CHOCO (he is really in love with this hospital bear).
Doug drove the kids to the park, and I had CHOCO go up to the car.....there was Andrew in his car seat, throwing up into a fire hat, waving at CHOCO. CHOCO kindly stayed with Andrew a few minutes, and then Doug drove Andrew back home.
I packed up all our stuff at the concert, and went home to get Andrew. His headache and vomitting seemed to stop as quickly as it started, but by then, we were already on our way to the hospital.
He is feeling better now. They are doing some tests (besides the basic blood and urine, they did a cat scan and may do a spinal tap today.)
We are waiting to see the doctor, please pray that there is nothing serious going on, and that we can go home soon.
Thanks for all your prayers.
Love,
Kim
Tuesday, July 27, 2004 10:30 PM CDT Hi Everyone,
Thanks for all of your prayers and nice gestures.
THANK YOU GRANDMA MANNING (the grandma of Andrew's friend Nick. She lives in Florida, but came out for a visit and was so sweet to bring gifts for my kids!) for the very generous gifts for Andrew and Christine! They both love the truck and they both love the Little Mermaid stuff purse and beauty kit!
THANK YOU SANDALS KIDS! The kids offerings are gathered up at our church and in the past they have bought Andrew such nice gifts, including his own old fashioned pop corn machine! Today we received a check, to be spent at Disneyland.....they heard about our Disney cancellation, and so the next time we get to go, they want Christine and Andrew to pick out whatever they want. The kids are so generous and sweet...Doug and I feel guilty taking their money...but we pray that God is teaching them so many things about giving, compassion, love.
THANK YOU MARIA AND THE "Room to Heal" Crew! OK, as many of you know, we moved into this new house, and within a few days Andrew was diagnosed with his leukemia. Yes, it has been almost a year, and no my boxes arent unpacked. It seems my energy is spent on other things, and by the time I get around to doing things like putting clothes away....Im too wiped out. So, my kids are here all day looking at blank walls and piles of stuff (not that bad, but almost)
Maria is an amazing lady (recently a tax attorney) who gave up her job to start a non-profit organization. She is VERY artistic and creative, and she wants to find sick children, and create a new environment for them to recover. Her idea was to redo Andrew's bedroom....although we suggested his playroom (since he doesnt even sleep in his bedroom anymore)....Since he cant really go out in public, his playroom is his haven. Well, Maria came, and she and Andrew looked through some picture books, and selected an underwater theme. Then, Maria and her amazing volunteers came back, and turned Andrew's room into a scuba adventure! There is even a life size Andrew and Christine scuba diving on the wall (and Andrew's has a caduses on the front of his wetsuit!!!!!). Just way too perfect, way generous....I cant wait to pass her name along to the folks at the hospital....so that other children can be blessed by her gifts.
So, how is Andrew doing? He is hanging in there. The doctors continue to tell me that he has done amazingly well, with few complications or delays.
He feels very tired lately, and his stomach hurts a lot (steroids)...his eating is not the greatest. He makes me go buy him several bags of chips...and then he carries them around all day (and night).
His blood counts are ok, but they are going back down. Please pray that there are no more delays due to low blood counts, as we want to move on to his last month of intensive treatment.
Next week we will be having a MAJOR chemo day on Tuesday, and then return for more chemo on W, TH, and Fri. Please pray for Andrew as he begins his FINAL MONTH of intensive chemo (which coincides on the 1 year anniversary of his diagnosis).
Speaking of his 1 year anniversary, it is so weird to think that a year ago he was running around like normal kid....and then the blood test that changed his life. He has gone through SO MUCH! It has been a very painful year for him physically, but the maturity and strength that he has shown is just phenomenal. I dont doubt that Andrew will be able to accomplish anything God has for him, as he is just so strong!
Thanks for all of your prayers, we know that this past year has been a gift....made possible by the many prayer that are said for Andrew each day. Please continue to pray.
Love,
Kim
Friday, July 23, 2004 6:15 PM CDT Happy Weekend!
Andrew is very tired, sleeping much of the day, but when he is awake he seems to be feeling ok.
We did his labs today, and his counts look fine. We do expect him to need platelettes and blood during the next month or so, but he is holding steady now.
He has not been eating much, and is starting to lose weight again. He is on steroids this week, which is supposed to make him hungry.
Last night he woke up several times (the steroids also make it hard to sleep, and give him nightmares), he kept crying about a sandwich. He also woke up before dawn and went down and got a bag of fritos (which he then ate in bed.) So, I know he is *thinking* about food, and snacking on chips (the only thing he wants to eat)...but he isnt eating enough, and he is starting to drop some pounds again.
Please pray that he doesnt lose too much weight, and that he stays strong. He is only on the steroids for a few more days, and then we really expect him to lose his appetite.
The weather is beautiful here!! I am 2 months into training for a triathlon for the Leukemia and Lymphoma Society...always at the back of the team, but making progress none the less.
Andrew's immune level is very low, so he wont be doing much this weekend, but he does enjoying driving around and cheering on the triathlon and cycling teams, it is great for him to see that so many people are fighting to find a cure.
love,
Kim
Tuesday, July 20, 2004 11:25 PM CDT Dear Friends and Family,
Andrew began his chemo today, after a two week delay....he got vincristine (joint pain, muscle weakness and nausea), doxorubicin (possible heart damage, hair falls out, nausea, & overall makes him feel awful), and dex (cravings for food, bone pain, world class tantrums). Please pray that he hangs tough this week, and that his mom doesnt have a nervous breakdown from dealing with his tantrums.
I had figured that the two week delay would have allowed Andrew's immune level to recover, so Doug made arrangements to take Monday off work, so that we could go to Disneyland.
I had Christine all ready to go (she is so beautiful!) Andrew was excited, as we had dinner reservations with Mickey and the Gang (I reserved a patio seat at Goofy's Kitchen). I did his labs Sunday.....and called in for them Monday morning...and they gave us the all clear. They were 927 which is still very low, but not critical.....so with lots of hand sanitizer and wipes packed up...we were ready to roll!
5 minutes before leaving, the clinic called back. They had given us the wrong information...and his immune level (anc) was really 338. Absolutely no way we could pull off going, Andrew needed to stay indoors.
Uh....we are all packed, I already told Andrew.....so I gently let Andrew know that Mickey called, and he has a big meeting...so he wont be able to have dinner with us. And Andrew NOT so gently let me know that he was going to Disneyland and dinner without him....and he was going today!
After further discussion ( I explained that ALL the characters had to go to the meeting, and they shut Disneyland down!)...Andrew cried, but conceded that we would have to wait until they came back from the meeting.....in a couple months.
Good thing we live close.....we will go when he hits maintenance.
We are really tired of being cooped up in the house, so tomorrow, we are going to take a stroll along the San Clemente Pier with our friend Gavin. He also has t-cell ALL. Lots of fresh air, no crowds......and a pack of hand wipes.
We want to thank all of you for continuing to check on Andrew and for praying for his specific needs.
love,
Kim
Sunday, July 18, 2004 11:48 PM CDT Hi Everyone,
We are doing pretty well here. Andrew has had a decent weekend. Due to the flu last week, Andrew didnt get any chemo...so it is our hope that his immune level came up over the weekend. I did his labs today, and in the morning I will find out his level (anc)...if it is decent, we will go to Disneyland! It is outdoors, and with our pass to go straight to the front of the line (one of the perks of having cancer), we should bypass a lot of germs.
Andrew gets more chemo on Tuesday. His hair has been growing back in, but Tuesday's chemos should make it all fall out again.
It has been an emotional time for us, as we approach our 1 year anniversary. We dont know how Andrew got leukemia....but we know a year ago, the little blasts were coursing through his veins, oblivious to us! The Bible says that Satan prowls around seeking to destroy us, and he certainly had every intention of stealing our baby.
We are thankful for this year we have had. It has truly been a nightmare, but at least we still have Andrew. Over this past year, we have met many other parents, who are now grieving over the loss of their children....so we are grateful that the Lord has been working in Andrew, keeping him in remission.
We are also thankful to so many of you for standing by our side; praying for Andrew, sending cards, making blankets (thank you Lisa!!), bringing Andrew snacks (perfect Heather and Traci), toys, clothes (he still wears his prized caduses shirt often, thank you Farrell Family!), planting his garden (very sweet Ann Marie). You have made this year more bearable. Sadly, we have friends and family who have not contacted us in several months....making those of you that have remained even more cherished.
We are looking forward to going to maintenance, but also scared beyond belief, as we are so afraid of relapse.
God has used this year to remind us of all that is important, and all that is not. We have had strangers tell us that through Andrew they have drawn closer to God. Really, what else could we ask for?
love,
Kim
Friday, July 16, 2004 1:02 AM CDT Hi Everyone,
Andrew had a check up on Thursday. He still has a cough and runny nose, but seems to be on the tail end of this flu. His blood counts are still very low, but they look to be on their way up. Please continue to pray for him to recover, as he gets hit pretty hard on Tuesday, with 3 tough chemos.
Andrew's cousin Ty is visiting, and he and Andrew are enjoying a lot of brotherly love.....at least as much as possible with Andrew's grumpy mood.
On the leukemia front, there is a test; minimal residual disease (mrd) which is sort of a cutting edge tool. It is able to detect leukemia at the molecular level, which is more sensitive than the tests they use now. MRD testing has shown to be VERY predictive of relapse...meaning, if someone has a high mrd score, chances are great that they will eventually relapse.
So...it would make sense to have this test....but here is where it gets tricky. For example, we asked for this test early on, and they said, "if the test comes back positive, what will we do?" Andrew is already receiving the maximum treatment....so, what would we do?? Would we do a bone marrow transplant?? Transplants are incredibly risky with not a great outcome for kids like Andrew...plus, there are just a ton of nasty side effects. So, we would not jump to a transplant if he were positive....so what is the point in the test??
We put the idea off for a while....but in the meantime, it is now going to be the standard, to test kids when they are diagnosed, and keep track of how to use this test...either to predict relapse or guide treatment.
Anyhoo.....as we are getting ready to approach maintenance (Andrew's chemo levels will be lowered, which is often when relapses occur)...we have asked again for this test. Our doctor has agreed to do it.
However.....we arent really sure why we are getting it, and what we would do if it ever comes back positive. The plan is to get it periodically on maintenance. Some say we shouldnt get it. My logic, is that if it starts to increase in a positive direction during maintenance, then it gives us a head start on getting Andrew back into remission.
Andrew's type of leukemia is very hard to get back into remission after a relapse....so maybe it would help us to get an early warning.....
I dont know...I just think it is an important piece of information, and it would somehow serve us well to have it.
Please pray for this test, that it comes back negative...and stays that way. And that if there is some value to it, that God would give us wisdom, so we can use this tool in the best way to keep Andrew healthy.
love,
Kim
Wednesday, July 14, 2004 1:12 AM CDT Hi Everyone,
We came home from the hospital Tuesday, thanks for all of your prayers!
Andrew has parainfluenza 3, which is prone to causing respiratory problems, specifically bronchitis and pneumonia. The doctors let us come home on another antibiotic, and we will go back on Thursday for a check up. We will then go back next week to resume chemo (we are putting treatment on hold this week, to give Andrew a chance to get over this flu.)
He has a heavy cough, but is otherwise feeling fine. Please continue to pray that he get past this flu with no complications.
love,
Kim
Monday, July 12, 2004 11:11 PM CDT Hi Everyone,
Andrew has some strain of the flu, influenza 3 ...something or other. Not a big deal for most people, but with his compromised immune system, they need to keep an eye on him.
He has a bad cough, but his fever may be going down (please pray for this!)
His counts are dropping, and he needs to have some proteins transfused (albumin)..but otherwise is hanging in there.
He is scheduled to get 3 strong chemos tomorrow...I think the doctor will wait and see how his counts are..Im not sure.
Im still praying that we can come home tomorrow evening, Ill keep you posted.
Thanks for your prayers.
Love,
Kim
Sunday, July 11, 2004 6:19 PM CDT Hi Everyone,
We are settled in to our hospital room.
Andrew has a lot of phlegm in his cough, and so they did a chest xray ( kids with leukemia are prone to pneumonia), we are still awaiting the results.
He has a weird rash on the back of his neck, and may also have an ear infection.
They are running blood cultures to make sure he doesnt have a bacteria (sepsis).
They started him on antibiotics and fluids.
The blood work they did shows that his immune level is pretty much bottomed out, so please pray that he is able to fight off whatever is causing his fever.
I will update when I know more.
love,
Kim
Sunday, July 11, 2004 10:35 AM CDT Andrew's cough has worsened, and he now has a fever too. We are on our way to the hospital. Please pray that he gets better soon...his immune level is very low now.
love,
Kim
Friday, July 9, 2004 6:54 PM CDT Hi Everyone,
Andrew has had a pretty good week. He has enjoyed having his cousing Tyler here with us, although the steroids make him quite moody, and he hasnt always been in the "friendliest" of moods!
Christine had a fever and a cold, and by some miracle (thanks to all our prayer warriors), Andrew got the cold and not the fever. We dont like that he has a cold, and will keep an eye on him, but at least he didnt get the fever (which is what makes us go to the hospital for days at a time.) So please continue to pray that the kids get healthy quickly.
Andrew's blood work was done today, and his immune level (ANC) has really dropped. He is extremely vulnerable to infection now, so one more reason to pray that the cold doesnt turn into something worse. Otherwise his levels are hanging in there...no transfusions needed.
**Attention Blood Donors*** We do expect Andrew to need transfusions in the next 4-8 weeks. Please call Maggie at the donor center to set up a time to come in. He especially needs platelettes...so if you have the time, we would be grateful! You blood donors have really given Andrew a special gift of life, and we are forever indebted to you!
Andrew is doing fine otherwise, some nausea (threw up all over the place yesterday), also some diarrhea that is very acidic and burns (sorry for the details). Please pray that he feels better in these areas.
We return to the clinic on Tuesday...he will get 3 types of chemo next week.
Thanks for your continued support!
love,
Kim
Tuesday, July 6, 2004 0:46 AM CDT Hi Everyone,
We had a great 4th of July! It started out early, as we boarded a paddle boat in Newport Harbor in the morning. The Make A Wish foundation took a group of families out for a cruise around the harbor. We docked at the American Legion post, where the Sheriff's Dept provided a delicious pancake breakfast. They also let every child pick out a toy. Andrew was thrilled beyond belief to get an ambulance (with a caduses on it!!) He hasnt stopped talking about it. At first I thought that the Wish Granter (the guy that comes to help us pick a wish)...I figured he must have arranged for Andrew to get the ambulance, but as it turned out...there was a pile of toys, and one of them just happened to be the ambulance, and Andrew snatched it up quickly!
Christine picked out a bear....it is the ugliest bear....multi-colored, tie-dye type thing. Doug took her over to the toys, and she went bananas for it! She still carries it around, which is unusual for her. It is cute to see her excited about an stuffed animal.
After the breakfast, we got back on the boat....and toured the harbor watching the boat parade. It was a gorgeous day, perfect weather. The boat was filled with food....hot dogs, ice cream bar, and all the Shirley Temples you could drink. They also had great entertainment for the kids; a clown (named Pickles), a face painter, a juggler, and an amazing musician!!
We returned to the dock in the afternoon...and headed home for a much needed nap. We woke up just in time to gather some dinner and head out to the park across the street (which is the ideal location for watching the fireworks show!) Christine loved the fireworks...she laughed and said, "boom boom" when they went off. Andrew loved them too.
Unfortunately, the night ended not so perfectly, as Christine developed a high fever. We are keeping her and Andrew separated, and praying he doesnt get it (as it would mean an automatic stay in the hospital.)
Andrew's cousin Tyler is here from Denver...he will be spending some time with us...and Andrew is excited to have him here.
Andrew is full swing into his "roid rage"...the explosive emotional meltdowns that are caused by his high doses of steroids. He woke up in the middle of the night last night, screaming and crying for BBQ potato chips....we just let him eat them in bed...it was 4am!
Tomorrow, he goes in for more chemo. He has been feeling ok, aside from the roid rage. Complaints of some stomach pain (steroids cause the cramping) and some vomitting, but nothing too severe.
Thanks for keeping us in your prayers...and please say an extra one that Christine's fever ends, and the rest of the household doesnt catch what she has.
Love,
Kim
Saturday, July 3, 2004 7:59 PM CDT Happy 4th of July! (almost)
Andrew is enjoying the beautiful weekend. He has started back on high dose steroids, which means, he is a bit of an emotional firestorm. It also causes his bones to hurt and gives him stomach cramps, but he is otherwise doing well.
His cousins came to visit (Taylor from Florida, and Tyler and Zachary from Colorado). We spent the day enjoying some outdoor fun at the Spectrum, riding the train, carousel, eating ice cream and chili dogs....oh, and chili cheese fries too!
Andrew's cousin Tyler will be spending a few weeks with us, and Andrew is looking forward to the companionship. Sadly, it has been a lonely year for him. He can play outdoors at the park, when he is feeling up to it....but cant go anywhere indoors. This has left him out of birthday parties, the swimming pool and water parks (due to his central line), trips to Chuckee Cheese or the McDonald's playland...and a bunch of other activities. Just a year ago he was busy with friends every day, and now, he spends most days alone.
Tomorrow, we will go on a cruise in Newport, hosted by the Make A Wish Foundation. The day will begin with a pancake breakfast, served up by the OC Sheriff's deputies and the Fire Dept....which Andrew is just thrilled about. We will no doubt see many of our friends from the Cancer Clinic at CHOC too, so it should be a lot of fun. We expect to be back home in time for some fireworks.
Thanks for your continued prayers....so many of you have stuck with us for the past 11 months (Tuesday will be 11 months!!!), and we are grateful for your support. We also appreciate your messages in the guestbook, reminders that you are still praying.
Love,
Kim
Monday, June 28, 2004 11:43 PM CDT Hi Everyone,
Thanks for all of your prayers! They must be working, because Andrew is hanging tough!
He went in today for a lumbar puncture, along with 4 major chemos. This was the first time we had the needle in the back done at the clinic, usually they are done at the hospital. It is much easier to get it done at the clinic, but the downside, the walls are much thinner. When Andrew gets his "procedure" I wait outside the room. Today at the clinic, I could hear him moaning and crying as they did it.....I dont usually hear that at the hospital.
He threw up a few times the first hour or so, but has not thrown up since. Usually, he is throwing up constantly, for a few days....so your prayers must be working!
We also decided to remove Andrew's feeding tube. This is a great relief, as it is really a pain in the neck to do it each night. Andrew has gained all of his weight back, so we might as well take out the tube. The concern I have, is that we expect him to start losing weight in the next two months, during this difficult phase. Part of me would like to keep him strong as he goes through this, but we have decided that if he starts to lose weight again, we will just put it back in, and hope we dont wait to long this time. Please keep this issue in your prayers.
Speaking of working prayers. When Andrew was first diagnosed, we met another family. We spent a lot of time in the hospital with them the first month. The parents were having a hard time, arguing a lot. The father was raised Christian, and the mother a Muslim. We were able to share the Bible with them.....and the last we heard, the mom was going to start going to a Bible study at her neighbors house.
Today, I was able to see the mom at the clinic. Her child has started maintenance, so we dont expect to see them much....but she told me, "God has used this leukemia to bring good things to our family. Me and my children have all been baptised as Christians, and my marriage is doing so much better. This only happened as a result of the leukemia, God used it to bring us closer to Him."
Thanks to all of you for praying....we know that God does hear your prayers, and we are grateful for your continued support of our family.
Love,
Kim
Sunday, June 27, 2004 0:05 AM CDT Hi Everyone,
Andrew has been doing so well. He has been active, funny, and a bit sassy lately....a normal 3 year old boy!
Yesterday he walked in the Survivor Lap at the American Cancer Society's "Relay for Life". It is a local event (many communities hold Relays), where people organize teams that raise money and then walk for 24 hours (taking turns of course).
Andrew walked the lap with 21 other survivors. A very nice man let Andrew sit up on his shoulders, and together they showed the crowd that they are living testaments that cancer does not always win.
A lady asked me an interesting question, "Why is he called a 'Survivor' if he still has cancer?" This is an honest question! As one of our oncologists pointed out at the recent CHOC "Survivor Party", a kid with cancer is a survivor from the first day!
Andrew would not have lived past a month or two, if his cancer had not been caught and treated. Just a decade or two ago, chances are, he wouldnt have lasted this long.....and even with today's statistics, a third of the kids with t-cell leukemia relapse and go to heaven. So, Andrew is definitely a survivor!
We know that Andrew's strength and healing is a gift from God. We know that God has heard the thousands and thousands of prayers that you all say, asking Him to heal Andrew. We are so thankful.....thanks to all of you, Andrew is a survivor!
Tomorrow, Andrew has big plans to spend the day with his Grandma J. They will do some fun, outdoor activity....maybe take Andrew to get his feet wet in the ocean.
Monday, Andrew starts his next phase of treatment. It will be his toughest phase so far. It includes a lumbar puncture...the long needle in the back, and lots of nasty chemos.....so please keep praying for protection.
Love,
Kim
Thursday, June 24, 2004 0:16 AM CDT Hey Everyone,
Andrew is doing well. He went to an Angels Baseball game the other night, and had a blast. We used to go quite often, but since he became sick, we havent really had the opportunity. Monday night, we were guests of the Leukemia and Lymphoma Society...and had a great time.
Andrew got a lot of attention from the fans in our section. One man bought him an Angels baseball hat, the usher gave him Angels "tattoos", he got some candy and lots of high fives.
This past week, another little girl in our neighborhood was diagnosed with leukemia. She is 3 and her name is Bailey. Please pray for her and her family, as they come to grips with the news.
This brings up some interesting points....is it normal for 2 kids in the same neighborhood to get leukemia??
Well.....it is higher than what is expected, but I cant think of anything in our community that is posing a threat. Which brings up, "what causes leukemia?"
Researchers have not been able to identify any one cause. There is some risk of leukemia to a child exposed to radiation in utero (if the mother has xrays early on, and doesnt realize she is pregnant)...and by the way, I was never exposed to radiation when pregnant. Another possible link is exposure to Benzene. This is a chemical, most notably found in gas fumes (which is why there is now that rubber thing that goes over the gas nozel, when you are pumping gas....at least in California, not every state has that requirement.)
Well, then why doesnt every gas station attendant have leukemia???
Most probably, leukemia is the result of a number of "exposures"....If one thing caused it, it would be easier to track down. If it were genetic, we would see it in families (and we dont, there is no genetic risk).
Is it alarming that we have more than one child in our area with leukemia?? Absolutely.
What may alarm you even more, is knowing that cancer is the number one disease killer of children. Leukemia is the most common type of childhood cancer. One in 2000 children will get leukemia during childhood. 1 in 300 will get some type of cancer.
And...that leads to my next point....WHY IN THE WORLD CANT WE GET A STAMP FOR CHILDHOOD CANCER?? A few people have been working very hard to get this accomplished, and have been circulating an on-line petition. Can you believe, that they only have 12,000 signatures?? What kind of country do we live in? Our number one child killing disease can not get a stamp?? We have stamps of tweety bird, flowers, old cars, Elvis.....why in the world cant they make a stamp for childhood cancer....it's not rocket science....print one more type of stamp!!
Please.....sign the petition, and then email it to everyone you know.
http://www.thepetitionsite.com/takeaction/928701473?ts=1076203976&sign
(you cant click on this link...you can cut and paste it into your browser....OR...click on the link at the bottom of this page, it will go to the site.)
Thanks a bunch,
love,
Kim
Friday, June 18, 2004 6:29 PM CDT Hey Everyone,
Andrew is feeling pretty good. He will not start his next round until a week from Monday...he was supposed to start Friday...but it involves a long needle into the bone, and the best person to do the procedure, Mary, does not work on Fridays.
For those of you that live close enough to see Andrew...take a look at his back someday. You will see a lot of scars on his lower back. Those are from the many procedures, where a long (THICK) needle is put in, sometimes it takes out spinal fluid, and then they inject chemo back in (yes, the needle is like a straw!) Other times, they "core" out part of his bone!! The entire time, he has to lay still, it takes several minutes..to get the needle in, take out his sample, put in the chemo.....he is awake, often moaning, crying or asking for his mommy and daddy. He is on sedatives and is pretty lethargic, and cant really move much...but he does feel it.
Anyhoo....if you can imagine having this procedure done, you only want the BEST person to do it!! I have heard too many horror stories, about having to try several times, the kid moving when the needle is in, all very painful to even think about. So, Mary is the best...and we will wait until Monday so that she can do it.
You all know about Team In Training...the organization that raises money for Leukemia and Lymphoma Society....WELL....some of the coaches and alumnae (5 of them)..have created an IRON MAN TEAM. (An iron man does a 2.5 mile swim, a 112 mile bike ride, and a 26 mile marathon....ALL ON THE SAME DAY!!)
WEll, this group has formed a team and entered an ironman contest. They will go to Idaho to compete next week. They have raised money to go, with the money going for Leukemia and Lymphoma Society...but the really neat thing, is that they are in a challenge against the other teams....the team that raises the most money, will get another $10,000 towards their cause!! So, we want the team to win, and bring in even more money to help find a cure....
If you feel so inclined, go to this link and donate: http://www.active.com/donations/fundraise_public.cfm?key=OCIronteam
Yes, I feel like a beggar, always asking for money.....but really, it is all I can do. I dont want anyone else to go through what Andrew has gone through...and I dont want to hear about one more kid relapsing, or one more going to heaven before they even get to kindergarten!
Thanks for your support!!
Love,
Kim
Tuesday, June 15, 2004 11:35 PM CDT Check out the photos!!
Doug did some sleuthing, and found that a photographer up in the Tahoe area had a picture of him with Andrew at the finish line of the race. It is now in the photo section!!
Andrew had his labs done today. Some of his counts are low (hematocrit is 23.4 for those that *know* about these things.)...but hemoglobin is 8.3 (they transfuse if 8 or less), so we wont do any transfusions, but will keep an eye on his counts.
Tomorrow we go for a check up. Im going to ask the oncologist if we can ditch the appetite stimulant (which doesnt seem to be working.) The night feedings seem to be helping a lot, and he does eat a little during the day.
Andrew had an in-home physical therapy assessment yesterday, and the therapist is recommending that Andrew have therapy once a week, primarily to build his strength. He does have some weaknesses, foot drop (nerve ending damage from one of the chemos causes this), but nothing that a little therapy and strength building cant remedy.
Thanks for visiting me, praying for me, and leaving me messages.
Also, thanks to Andrew's Aunt Jacque who is training for the TNT Disney Triathlon in Orlando!! She is doing awesome with her training....and we are grateful for all that she is doing to help make sure Andrew gets better!!
Love,
Kim
Sunday, June 13, 2004 8:07 PM CDT Hi Everyone,
Andrew has had a great weekend. He is the "Honored Hero" for the Team In Training cycling and triathlon teams, so he went out to cheer on the South County Tri team (that's my team), the cycling team, and he still needs to get out to cheer on the North County Tri team...(he hasnt forgotten about you folks in the north!). It's funny that Andrew is the hero for the teams, because the team members are our heros! They give up a lot to help make sure there is continued research to find a cure for leukemia. One of the few pictures we didnt erase from Tahoe, is Andrew with one of his heros, Rick. Rick rode on the Tahoe Team....their is a picture of the two of them at the "after party" in Tahoe.
Andrew has wanted a pet for sometime. He still misses our cats Bubbie and Sweebie. We had to give them away back in December 2002, because Andrew was very allergic to them...but he still talks about them a lot. So he decided he would like a fish. We got a betta fish named Kovo. Andrew picked out the fish and the name. He is very excited about this new pet. You can check out pictures in the photo section.
Today we attended the CHOC Survivor Day, for those that are surviving cancer. There was music and dancing, a magician, cookie decorating, and lots of fun. Andrew had a blast dancing with CHOCO the Bear (there is a picture in the photo section.) It was great to see our friends from the clinic and to meet survivors that have been off treatment for a while. Sadly, some of our friends werent at the party, as they have gone to heaven.....but they are close to our hearts!
Andrew gets a break from chemo this week...will just have a check up. The next week he will start "delayed intensification #2". As you can see from the pictures, he looks and feels great.....the night feedings have made a world of difference!
Thanks for checking up on Andrew and for your prayers!
love,
Kim
PS. Please pray for Lakota! She recently had a transplant and is having a hard time. Her family is one of the rare families that had two children with leukemia, and sadly her brother did not make it! I cant imagine the pain her family feels right now....please pray! Her website is www.caringbridge.org/mn/laplafcan
Thursday, June 10, 2004 12:59 AM CDT Andrew is having a good day.
Yesterday he had more chemo...vincristine and methotrexate. He has had some tummy and leg pains, but otherwise is holding up pretty well.
The night before, his feeding tube came out in his sleep (he probably rubbed his face across the pillow which pulled it out.) We tried to put it back in, sliding it down the nose, but it seemed to get all wrapped up in his throat, making him gag and choke. So, we left it out, and had the nurses put it back in at the clinic yesterday.
The nurse seemed to experience the same thing....the tube went down a ways, and then hit some resistance, and she couldnt get it all the way down to his stomach...we spent a long time trying to get it in, all the while Andrew was choking, gagging, coughing and crying. Poor thing, that must be a very scary feeling!
Eventually, another nurse came in and was able to put it in successfully.
Andrew's weight has stayed the same, which is good. We recognize that he hasnt had any chemo for two weeks....and he is on an appetite stimulant, so he SHOULD be hungry. We will wait to see what happens to his appetite during the next phase of chemo. He may be sick and not hungry...making the tube necessary.
On the fundraising front......I was so impressed by Doug's participation with the Team in Training program that is put on by the Leukemia and Lymphoma Society, that I have decided to train for an event myself. I joined the South OC Triathlon Team...and have begun swimming, running (ok walking), and cycling, in preparation for the Los Angeles Triathlon in September! Doug isnt stopping either, he will do another 100 mile ride in August, The Cool Breeze event will travel the coast of Ventura County, just north of Los Angeles.
I have met so many wonderful kids, just like Andrew...both at the hospital and on my online support group. To think that not all of them will make it breaks my heart....and the only thing I can really do (besides pray A LOT) is try to be part of finding the cure.
Thanks for all of your prayers and support.....it is hard not to grow weary on this journey....it is long and not so easy...but we are encouraged by so many of you that stay by our side, calling to make sure we are ok, sending us cards and emails, and just being there for us.
Love,
Kim
PS. The pictures we took at the TNT ride in Tahoe were mistakenly erased from the camera. Anyone with pictures of Doug and Andrew at the finish line...we would be grateful for a copy.
Also, if you are a TNT rider that we met in Tahoe, please sign the guestbook and tell us which team you are from :)
Tuesday, June 8, 2004 10:49 AM CDT He did it!!
Doug rode 100 miles around Lake Tahoe!! He was so well prepared by his Team in Training, that he came in with a great time and didnt feel too tired!! As he approached the finish line, he grabbed Andrew (who was cheering on the side lines)...he put Andrew on the bike, and they crossed the finish line together!!
**Sadly, the many pictures I took of this moment were inadvertantly erased from our camera :( If anyone reading this was at the event and has pictures, please send them to me, thanks.
A big "THANK YOU" to his coach Lesa, and the mentors on the team, Gene, Dick, Laura, Robin, Kristen...(hope I have remembered you all by name), who spent time teaching Doug the tricks of the trade and encouraging him to prepare for this race. All those long hours of riding the hills of OC were surely appreciated on Sunday, as the months of training really made the ride enjoyable for Doug.
I should mention, that a team member, Bruce, who is also an APL Survivor, was THE FIRST person to finish the ride....out of all 2500 riders!! Way to go Bruce!!
It was BEAUTIFUL!! perfect weather, crystal blue water, snow covered mountains in the background!
We met many wonderful people, survivors and supporters!! Andrew got lots of attention!! As far as I could see, he was the only bald kid at the event, and that bald head seemed to be a magnet. So many loving people flocked to him to hug him, take their picture with him, and tell us they will pray for him. I cant tell you how many people came and told us that when they were getting tired during the ride, they thought of Andrew and he got them through....this from people we had never met (but they had seen Andrew around the hotel or during the race.) It was very heartwarming!!
I was able to meet two of the moms that I know from my online support group (for parents of children with leukemia). Cindy and her son Brandon from Maryland, and Lynne (I didnt get to meet her son Grant) from Idaho. It was great to meet these terrific moms!!
The event (which is not exclusively for TNT) had 2500 riders, 1500 were riding for TNT. They raised 6.5 million dollars this weekend!!
So many of you reading this supported Doug financially,, and I want to thank you for being part of the cure!!
I met a woman with APL (rare and now very curable cancer)...when she was diagnosed, the prognosis was not good, and then she relapsed!! As a last ditch, she was put on a clinical trial (funded by LLS)....and it saved her life!! It is now the reason APL has a good prognosis. It was great to hear how the dollars raised at these events is put into action.
Andrew is feeling pretty good. His legs hurt, and he cant walk far without getting sore, but his spirits are high.
As we were riding home (10 hour car ride)...I could hear him singing the Veggie Tales song, and for a moment, life almost seemed normal. Then a glanced back in the rear view mirror, and saw the feeding tube coming out of his nose, his bald head, pale face...and his sparkling eyes...with dark circles around them.
He is not a typical 3 year old listening to Veggie Tales..and that stinks!! But, God has allowed Andrew to inspire others, and that is wonderful!!
If any of our new friends from TNT are reading this.....please sign Andrew's guestbook, and let us know what team you are from!
Lots of love,
Kim
Thursday, June 3, 2004 10:50 PM CDT Hi Everyone!!
Well, we are packing up and getting ready to head out to Lake Tahoe early tomorrow (Fri.) morning!! Doug feels good and is looking forward to the ride! We have met so many wonderful people, both with Team In Training (Leukemia and Lymphoma Society), on the team, friends and neighbors (and complete strangers!) that have supported us.....we will think of all of you as we participate in this event, to help find a cure for blood cancers!!
Andrew went to see the oncologist as well as the endocrinologist today. He is doing great!! His counts have rebounded very nicely (in fact his immune level looks good....allowing him some freedom while we are in Tahoe.)
He has gained more than 5 lbs in the last week and a half!! He now weighs 29 lbs. I never knew 5 lbs could look like so much. He went from being very thin and gaunt, barely walking, sleeping most of the time.......to almost looking a little chubby!! Much more alert and active.....
He is continuing on the appetite stimulant as well as the feeding tube. I asked the doctor, if he continues to do well, which one would we get rid of first, and she said the appetite stimulant...so it looks like the tube will be in for a while.
The meeting with the endocrinologist also went well. As best as they can figure, all of Andrew's hormonal functions look fine. There are thyroid binding proteins (one of them being albumin) that are low...and the oncologist attributes that to one of the chemos (peg asperagenese...the shot in the thigh). They will continue to monitor him, but for now we can stop the medications for this issue.
We will return from Tahoe late Monday night.....and Andrew will get labs on Tuesday, and chemo on Wednesday. Then he will get a break for a couple weeks......
That puts us near the end of June, when he should begin his final round of intensive chemo (can you believe it!!?). He will have Delayed Intensification #2. Each phase becomes progressively more difficult, and DI#2 has the worst reputation of them all.....but we know that your prayers to help keep him strong and protected have carried Andrew thus far....and we know that God will continue to keep His hand on Andrew....
I am so grateful for all of you, for not giving up on Andrew...this road is long and difficult, but you have all been so faithful, and our Lord has been faithful....and as we look back over the past 10 months, we can see many miracles along the way....we can see that Jesus has done so many positive things through this experience.
Thanks for continuing to lift Andrew up in prayer!
Love,
Kim
Wednesday, June 2, 2004 0:21 AM CDT Hi Everyone,
Thanks so much to those of you that have left encouraging messages, called and emailed to offer support, prayed for us, and just checked in to see how we are doing. God has really used this trial to show us how many wonderful friends we have....and so many 'strangers' have come forth to stand beside us during this battle.
It has been a very tough week...but Andrew is definitely improving.
I am so in awe of his bravery! I was having to push and pull his feeding tube (long tube that goes in the nose, down the throat, into the stomach)...the other half hangs out his nose (is taped to the side of his face)...with the end dangling like his other IV lines. Anyway, I was moving it around, and I said, "I'm so sorry you have to have this thing, does it bother you?"....he shook his head 'no'. I said, "Im so proud of you, I was worried you might pull it out." He smiled and said matter of factly, "Mom, Im ok". What a trooper.
I can tell you, that a tube up my nose would last a nano second! Tickling the back of my throat (it makes Andrew gag from time to time).
He has been a very big boy, with all his new IV poles and stuff. One of them is "hand held"...sort of like a fancy dog leash (but hooked up to his central line). He carries it around like no big deal.
We arent getting much sleep, as the IV's and feeding go round the clock, with lines needing to be "flushed" after each dose...but we are thankful that the antibiotics (IV) will end Friday night....so Sat-Sun in Tahoe (and the Monday ride home) will be less restrictive for him.
We expect the feeding tube to last a couple of months, at least...but are praying that he gains his strength back quickly.
He is eating now, more energy, talkative. He still sleeps a lot, but not all day. He has lost a lot of muscle mass, so we are hoping that the increased nutrtion and physical therapy will help in that area.
We will take his labs again tomorrow. They were "on the rise" when we were discharged from the hospital on Sunday, so I am hoping that they look good.
He will have a visit with his oncologist Thursday, to see how he is responding to everything, and get the green light to resume chemo next week.
We will also have a meeting with the endocrinologist, to go over the multitude of tests they ran. We have gotten mixed info, so it will be nice to sit down and understand how he is doing in this area. There is some concern that his thyroid is not functioning properly...and I guess his adrenal, pituatary, growth function etc. This can be from the chemo....in which case it will most likely correct itself (although there can be some issues here long term). It seems too early to be from the radiation (since those effects dont show up until further down the road)...we hope it is not the radiation...as in that case, it would not correct itself, and he would need lifelong medications to fix those problems.
Please pray that the endocrinologist gives us an encouraging report. Also, please pray that Andrew's counts look good and his infections are all gone.
Love,
Kim
PS. Thanks to so many for praying for Spencer...his recovery has been pretty amazing...he has all of his doctors so excited. Your prayers have really made a difference! You can check out his latest update and new pictures!! www.caringbridge.org/ca/spencerrocket
Additionally, a little girl named Lakota needs your prayers. She has t-cell leukemia (like Andrew) and recently relapsed. She just had a transplantthe other day, and is struggling...as if that wasnt hard enough on her and her family, they are still grieving the loss of her brother from leukemia. You can check on Lakota and leave her a prayer at www.caringbridge.org/mn/laplafcan
Sunday, May 30, 2004 6:31 PM CDT Happy Memorial Day!
We are finally home!!
Thanks for praying for Andrew. He has had a very tough week, but we are on our way back to recovery.
As I write this, we are waiting for the home health nurse to arrive, as Andrew will need some IV pumps at home.
He has his ng tube (feeding tube in his nose). He can still eat through his mouth (which he is now doing more of, thanks to an appetite stimulant that he is taking). He will take a nutritional supplement through the night, that will run from a pump into his tube.
He is also on 2 IV antibiotics. One is short, and the other runs over the course of an hour, 4 times a day. We will need another pump to run the antibiotics.
Additionally, he takes a 3rd antibiotic by mouth, his appetite stimulant, and a steroid.
The steroid is for his adrenal functioning, which is very low. The heavy chemo has suppressed his own adrenal functioning, so this med will help.
His looks have changed a great deal this past week. He came in looking very thin and gaunt, and now (thanks to the steroids) is getting that puffy face. It's amazing how often and drastic his looks can change.
We are praying that his blood counts remain stable, that he is able to get through his medications without a fever, and that he begins to build his strength.
We are going to Lake Tahoe next weekend, and want to make sure Andrew can be there to cheer on his daddy and the TNT Cycling Team.
We are going back to the clinic mid-week, so that the doctor can check and see how he is doing. They are holding off on his chemo for now....as his body needs some time to recover. We hope to start his chemo back up when we return from Tahoe.
Thanks for all of your prayers and encouraging words, they really help us a lot as we go through this.
Love,
Kim
Friday, May 28, 2004 10:07 PM CDT Remember the song, "Welcome to the Hotel California.....you can check out any time you like, but you can never leave" ?????
The song plays through my mind often, as we continue our stay in the hospital.
Andrew has perked up a bit, eating, staying awake more, his personality coming back! I was really hoping that when the doctor came around, that she would say we could leave tomorrow.
Unfortunately, she said they will see how he is doing on Tuesday, after the long, holiday weekend.
("Welcome to the Hotel California.......")
After much begging, the doctor said that they would review his status on Sunday.
The 2 bacteria in his line are responding to the treatment, but he has another bacteria now....which they will begin treating today.
His fever is gone (crossing fingers), but his blood pressure is very low (as are some other related blood levels). Despite having a platelette transfusion the other day, his level is still very low, and his blood counts are dropping. His immune level is extremely low too. They dont want him to go home until these things are stable.
Please continue to pray....that all the bacteria is cleared out, he does not get any more fevers, and that his blood pressure, adrenal functions and blood counts remain stable.
Thanks for checking up on him, and for encouraging him with your messages.
Love,
Kim
Thursday, May 27, 2004 9:38 PM CDT We had a change of plans today. They decided that Andrew would have his scope, from both ends, and if all looked good, he would get the ng (feeding) tube.
He drank a bunch of magnesium last night....really gross stuff! He was up til 1am drinking it, then he went back to sleep until 5:30 am, when we had to wake him up and make him drink some more. (it's like some weird prisoner of war tactic)...and the purpose was to clear out his system....which he did later this morning :0
He was a trooper through it all, he didnt like it, but he drank it :)
He had to wait all day without eating (he didnt mind, but I thought I was supposed to be fattening him up?)...as he cant eat before getting anesthesia.
He had his procedures at 3:30 this afternoon, under conscious sedation...which means he is awake, talking, etc., but is so woozy that he really doesnt know what is going on.
The doctor said that his insides look amazing! She was surprised to see such nice, healthy guts on a kid going through chemo...let alone one that has been having all of his symptoms.
Andrew has his new tube in his nose....he seems to be ok with it.
He has been feeling ok, but throwing up a lot. We dont know if that is from the sedation drugs, getting used to the tube that runs down the back of his throat, or the magnesium (which can cause nausea!).
We hope that by tomorrow he is feeling better and eating well.
Andrew's blood counts dropped suprisingly low today, so he was given another transfusion.
The two bacteria in his line did not show up today, a sign that they are responding to the antibiotics.
We will wait it out he next day or so, and see how he is doing, make sure his fever goes away and the blood cultures stay clear.
Thanks for all of your prayers!!
Love,
Kim
Wednesday, May 26, 2004 4:12 PM CDT Thanks to all of you for sending so many prayers and well wishes.
It is 2:20pm and Andrew has been asleep all day, awake only about an hour since he went to bed last night.
He is still not eating much. They have put him on an appetite stimulant, and we are hoping that helps to improve his eating.
The bacteria in Andrew's body is in his catheter line. The doctor thinks there could be two different bacteria, strep and staph, we are still waiting for the sensitive cultures to come back (hopefully in the morning)..which will tell us the specific type and strain, and give us more direction about how to treat it effectively.
Andrew will have a scope done of his digestive tract on Friday. There is some concern that he may have a yeast infection, ulcers, or a bad case of reflux...and they want to find out what may be going on.
Once he has the scope, and they determine that he can handle it, they will be giving him a feeding tube (in his nose). It is a thin tube that goes in his nose, down to the top of his stomach. He will need to keep it in at all times, and the nutrition will be pumped in (via machine) at night. We are hoping that this will help to strengthen him and make him feel better overall.
Please continue to pray that Andrew be protected. The little guy is very weak, and this is really taking a toll on him.
love,
Kim
Tuesday, May 25, 2004 8:15 PM CDT Hi Everyone,
Thanks for all of your prayers!
Andrew is still running a high fever, despite the tylenol and high dose antibiotics.
The "good" news, is that the blood cultures came back positive, and he does have an infection 'somewhere'.
The only reason that news is good, is that the "hunt" to find the cause of this fever is now over.
The not so good news, is that we will be in the hospital several more days, trying to identify the type of infection, treat it and make sure it is gone.
The infection is in his blood, which makes him at risk for sepsis, which can be fatal if not treated. But since we are here, of course, it is being treated. They will try to find the best antibiotic to target this.
Since the blood is drawn through his central line (the catheter that goes to his heart) that means that this line is possibly now infected. It can be difficult to rid the line of the infection...and if we cant, he will have to have another surgery to replace the line. There is a chance that we can clear the infection and the line will be fine....it can go either way.
So, please pray that we can get rid of this infection quickly and efficiently, without having to replace the line.
We are still dealing with other issues, re: nutrition, mucositis, etc. We appreciate you continuing to pray for Andrew's body, to get strong.
Ill keep you updated,
Love,
Kim
Monday, May 24, 2004 8:11 PM CDT ***It's FEVER TIME again!****
It seems like it is always fever time....
We are on our way back to the hospital, as Andrew is running a fever. He is not feeling well. Complaining of bad stomach cramps, difficulty walking (not sure if his legs hurt or are weak.) He is very tired, sleeping off and on most of the day.
They will run more tests (stool culture, stomach x-ray, check for mucositis issues)....
Im sure we will also revisit the nutrition issue.
Please pray for some supernatural miracle to get us out of there (this is a selfish prayer for me!)
Please pray that God heals Andrew of any virus, infection, or other problem...and protects him and allows him to get stronger.
Ill update soon.
Love,
Kim
Saturday, May 22, 2004 11:58 PM CDT If you ever wonder about the future of this country...consider the 5th grade students in Mrs. Oblea's class. These darlings "adopted" Andrew...and have spent the past months coming up with creative ways to raise money to support Doug's ride with the Leukemia and Lymphoma Society.
Today was their big Garage Sale! Many weeks and hours of hard work went into preparing for this event. They took donations of items (and money), priced all the items, made sure it was well advertised....and they did it all to help make sure we find a cure for leukemia!
We stopped by the Garage Sale, and the kids treated Andrew to a Krispy Kreme doughnut (and a lot of attention). Andrew loved the kids...and he ate his entire donut! That is probably the most calories (and fat) that he has kept down in the better part of a week (combined!)
And...speaking of the race, which takes place in 2 WEEKS :0 Doug rode 85 miles today! He doesnt seem to get too tired, he says he feels great.
The kids and I cheered on the team as they rode (the long hilly route) from Irvine to San Clemente. The ride lasted the better part of 8 hours (with some extra breaks today.)
Andrew had hoped to return to the garage sale to thank the kids (after dad's bike ride)...but the ride went late, and we didnt get the chance.
SO, if you are one of the ANGELS! that helped with the garage sale....THANK YOU SO MUCH! We think you guys are the best, and we hope and pray that when Andrew is in 5th grade, that he is as amazing as all of you are....so compassionate, caring, kind, thoughtful....I know all your parents (and the whole community) are really proud of you!
As for Andrew....he is still not eating much. What he does eat is coming back up most of the time. Please pray that he can keep some weight on and stay strong. He is very tired and weak...please pray for his body to get the rest it needs.
His Grandma J came over tonight..they baked cookies (happy faces, flowers, and the letter "A"). This seemed to really boost Andrew's spirits, which is nice to see.
Thanks for all of your prayers, for all of your support, we really appreciate the love you show to our family.
**news flash** for those of you that have followed and prayed for Andrew's friend Spencer...check out his website...he is doing really well (but still needs lots of prayers.) www.caringbridge.org/ca/spencerrocket
love,
Kim
Thursday, May 20, 2004 6:53 PM CDT Andrew is home and hanging tough! He has been vomitting, and has leg & tummy aches. These are both "normal" considering the chemo he received this week.
His appetite has improved a bit (if he would stop vomitting it would be better) so we are hoping that he can keep his weight up.
He is sleeping a lot. Not all day long, but sleeping late in the morning, early to bed at night, with a couple naps in between. This is most likely from the radiation, and is giving his body some needed rest.
He has baby fine hairs starting to poke through on his head, although he told me to cut them off, he likes to look like Caillou (the cartoon on the front of his website.)
Andrew never ceases to amaze me, at how well he handles everything. He knows far more than any child should, about cancer, leukemia, chemo and blood work....but Im so proud of the bravery that he shows.
It nearly broke my heart, as he was vomitting yesterday, he looked up at me and said, "I dont deserve this". He surely doesnt deserve this at all! Please continue to pray that he will be protected from all the side effects, both short and long term...and that God would allow him to complete his treatment with relative ease.
Thanks for your prayers and messages in his guest book. As one of my friends pointed out, imagine what a wonderful keepsake this guestbook will be for Andrew, when he is old enough to understand...as he will be able to see that so many were standing by his side, praying for him and cheering him on as he beat leukemia!
love,
Kim
Tuesday, May 18, 2004 8:35 PM CDT Thanks to all of you for your prayers the past few days, weeks, and months!
As the doctor reminded us today, Andrew has "breezed through" his treatment thus far (relatively speaking.)
They dont have an explanation for the continued fevers (which are gone now), except that his body is just going through a difficult time.
They are still awaiting results of tests re: epstein barr, mono, etc.
The endocrinologist feels strongly that Andrew's delay in growth is due to the chemo, rather than damage to his pituitary. This is good news, as we expect that whatever is lost due to chemo, his body will make up on it's own, once treatment slows or is finished.
We still need prayers that it doesnt effect his endocrine system, as it could later down the road. (effects of radiation dont happen until much later.)
The really good news is that there is no relapse, and anything else we will get through (with all your prayers-thank you!!)
We are now keeping a caloric journal, keeping track of what Andrew eats....so please pray that he gains some weight.
Andrew had a couple of chemos today....please pray that he feels ok and stays strong...the doses keep getting higher and higher.
Thanks again for all of you that are holding us up in prayer!!
love,
Kim
Monday, May 17, 2004 6:42 PM CDT Hi Everyone,
We are still in the hospital, and they are running a number of tests to try and get to the continuous fever issue.
They are doing more hormone tests, as well as checking for additional viruses (epstein barr, mono, etc.)
The nutritionist visited, and felt that considering a tube in the nose was in order. The last nutritionist favored the TPN and lipids. The TPN and lipids does not require the tube down the nose, and can go right to Andrew's catheter...however, the tube in the nose is preferable from a health standpoint, as it goes through the intestines and digestive tract, helping to keep them in order.
We are pushing "boost" drinks and other foods, while we consider our options.
Andrew had an lp today (check of spinal fluid), as well as a bone marrow aspirate and biopsy (long needle in the bone, the aspirate takes the blood from the marrow, the biopsy takes a piece of the bone). It is very painful!
The good news, is that the lp and bone marrow tests came back clear. Praise God!! They were ruling out a possible relapse, and we are so thrilled to know that Andrew is still making progress!
Thanks so much for all of you for praying, and sending encouraging emails and notes in the guestbook. This is such a difficult time, and we are so thankful to know that 9 months into this, so many of you are still standing by supporting us.
Love,
Kim
Sunday, May 16, 2004 10:15 PM CDT Hi Everyone,
Andrew has had a fever off and on all weekend, and we are heading to the hospital (AGAIN!)
Please pray for him, the next 3 month have much more chemo, and are going to be very difficult, and I worry about him going through it when he is so weak.
We know that all of your prayers have protected him thus far, and we ask that you keep praying, asking God to protect Andrew as he rids him of all the leukemia.
Ill update when I know more....I am sure they will do some different cultures and tests when we are there.
love,
Kim
Wednesday, May 12, 2004 10:17 PM CDT Thanks so much for all of the prayers, emails, and notes of encouragement.
Andrew is now home, feeling pretty good.
We met with the doctor in charge of infectious disease, to try to get some ideas re: what could have kept Andrew with a low grade fever for so long, in spite of heavy antibiotics. She said that next time we go in to the hospital for a fever to make sure they do a stool sample and urinalysis and urine cultures first thing, before the antibiotics.
Andrew had a renal scan (or some sort of kidney/bladder study) today. It was interesting. They insert some nuclear medicine stuff into his catheter, and soon, on the monitor, you can see his kidneys....glowing! Then you can see the kidneys empty into the bladder. His bladder was quite enlarged, so much so that my untrained eye could no longer see the kidneys. After he "emptied" his bladder, there was still "glowing stuff" in the kidneys and bladder...My laymens guess, is that the stuff was supposed to be gone. We should get an official report from the urologist in the next day or two, letting us know what this may mean.
We got the MRI results back, with a basic "no change" note. I hope this doesnt mean that the myelination process has been halted, I am waiting to get a more in depth report in the next few days.
Andrew seemed to have a lot of energy today. The past few days, he has slept 22-23 hours a day. The cranial radiation can cause "solmonence syndrome" usually a month or two after the radiation. It is when the child sleep for up to two weeks, with little waking time. It is a time for the brain to recover from the radiation.
Andrew received a blood transfusion last night, his blood counts were not critically low, but they are always much lower than the average healthy person. The red blood carries oxygen throughout the body, and the transfusion was to allow more oxygen to the brain during this solmonence.
Andrew's weight dropped down to 24 lbs, and the nutritionist and doctors were concerned. They gave him TPN (nutrients and fats) while he was in the hospital, but we decided not to give it at home. It can be hard on the organs, and it is one of those things where you measure the pros and cons. We are praying that Andrew can keep his weight up (he came home at 26 lbs)....and maybe add some more... His current phase of chemo will be through the middle of June, and after that he starts a very hard phase for two months. We want to make sure he is strong enough to handle that difficult (Delayed Intensification #2) phase.
Andrew also got IVIG (or something like that) which is an immuno booster. This will hopefully help him stay strong too.
Andrew saw the physical therapist again in the hospital, and she is going to try and set up in home therapy a couple of times a week. He has become very week and unstable, and we hope to try and keep him from getting any weaker.
All in all, after talking to his doctors, I think the conclusion is this....Andrew has stayed remarkably (due to many prayers!) strong thus far. Most kids do not get this much chemo.....many kids I know with leukemia who were diagnosed after Andrew are already done. Andrew is on very tough stuff, and has been a trooper. But, it is starting to really take it's toll on his little body. The effects of chemo/radiation are cumulative. He still has 3.5 months of intense chemo to go...and then 2.5 years after that of maintenance chemo.
Please continue to pray for him, that his body will stay strong.
Thanks so much for your continued support,
love,
Kim
Monday, May 10, 2004 8:06 PM CDT Andrew is undergoing a number of tests, to try to find the source for his fever. Today he had a CAT scan of his head, chest and tummy, looking for signs of infection...none were found. They did find that his bladder is distended. He is urinating quite a bit, so the doctor isnt sure what this means. It appears to be backing up into his urethra and kidney...we will talk to a urologist tomorrow.
He will have his MRI of his brain tomorrow.
Both today and tomorrow he has to fast before the procedures...today's was at 3pm and tomorrow's is scheduled for 2:30pm.
On the one hand, we are trying to push food on him, as he has withered down to 25 lbs. And then he has to fast for two days straight!! They are starting him on TPN, IV nutrition, to help get him some calories. TPN can be hard on the organs, please pray for protection.
On top of all of that, his eyes are swollen, and we are not sure why. It could be his low albumin, they will check tomorrow.
Also, he has slept non-stop since yesterday evening. They think the sleepiness could be "solemence"...this occurse about 6 weeks after cranial radiation, as the brain finally takes a break from all the trauma and the kids sleep for a couple of weeks!
We are very troubled by all these little things....as we dont really know what is going on.
Please pray that the doctors find the sources of these issues soon, and can treat them effectively without further side effects.
I will let you know more after tomorrows tests.
love,
Kim
Sunday, May 9, 2004 9:12 PM CDT Andrew continues to run a fever, and we are going back in the hospital.
We appreciate all of your prayers,
love,
Kim
Thursday, May 6, 2004 7:37 PM CDT Andrew is now home. His fever is gone and he is feeling fine.
We met with an endocrinologist re: his growth (or lack there of)...there is some question as to whether this has been caused by the chemo (in which case he will make most of it up on his own) or by the radiation damaging his pituitary. They are still waiting for more labs to come back.
They have found that his thyroid is low, and he is starting on meds for that. Not sure if it was damaged by the chemo or radiation.
He will be going in on Monday for another MRI of his brain, to monitor any changes caused by the radiation.
Thanks for all of your prayers,
Love,
Kim
Wednesday, May 5, 2004 5:42 PM CDT Hi Everyone,
We are still here in the hospital. Andrew has continued to run a fever...they want us to go at least 24 hours without a fever before we can go home, so hopefully that will be soon!
In the meantime, they have held off on his chemo until he is free of a fever....probably they will give it right before we leave.
They are giving him some albumin (protein) as it is low. He is in good spirits, and his counts are otherwise fine.
Thanks for keeping us in your prayers....
Love,
Kim
Tuesday, May 4, 2004 11:42 AM CDT Hi Everyone,
We are back in the hospital. Andrew spiked a fever last night, and we came in to the hospital at around 4am.
We will be here at least until tomorrow, depending on how things go. They have started him on IV antibiotics. Please pray that he is protected, the antibiotics alone can damage some of the organs pretty badly.
Ill keep you posted when I know more.
Also, please read yesterday's journal entry, about some wonderful kids in our community (go to Journal history).
Love,
Kim
Monday, May 3, 2004 6:47 PM CDT Hi Everyone,
It's a HOT day here in California. Andrew is feeling pretty good! He went for chemo today (vincristine and methotrexate) and will go back tomorrow for a peg (shot in the leg).
I talked to Andrew's doctor about his lack of growth. The chemotherapy is so busy killing off cells, that it's difficult for the body to grow during this time. I am concerned, because some of the drugs can cause avascular necrosis of the bone (where the bone basically dies inside)...this can lead to all sorts of problems. Andrew's treatment can also damage the endocrine (growth hormone) functions. The major problems dont usually show up until later, but I feel better checking on them now.....
They took some blood tests today, and they also did an x-ray to measure bone growth. Hopefully we can get the results back soon, just to make sure nothing major is going on with Andrew's growth.
I have to share about some really neat kids in our community! Their teacher lives in our neighborhood, and recently told her 5th grade students about Andrew, as well as Doug's bike ride. The kids took it upon themselves to come up with all kinds of ways to make money. Some girls held a lemonade stand, another group started a dog walking business...and the entire class is having a garage sale (complete with face painting and a car wash!!)....all the proceeds will go to the Leukemia and Lymphoma Society...for Doug's bike ride.
It is so inspiring to see kids respond to Andrew in this way!!
Thanks for all of your prayers!!
Love,
Kim
Friday, April 30, 2004 4:10 PM CDT Hi Everyone,
Andrew got his lab results back this afternoon, and his counts have rebounded nicely. He is all set to get more chemo on Monday.
There seems to be some instability with his glucose. In the hospital it was very low, and they had to keep monitoring it. Today, it showed up very high. We will talk to the doctors on Monday.
We will also bring up his height and weight. He has stayed the same height since he was diagnosed in August (not one millimeter of growth)...and his weight is a couple pounds less than it was when we started this. He is well below the scale for his age. They told us that he probably will not grow on treatment...however, despite being the same, his pants (18 mos size) are now falling off of him, we cant keep them on his bottom. Im not sure why they are falling off, if his height/weight is the same. We will ask the doctors about this as well.
It is a gorgeous weekend, so we are hoping to get to enjoy some fresh air and fun before starting his meds again next week.
It looks as if Andrew's guestbook is approaching the 30,000 signature mark. We know there are many of you that visit Andrew...we would love to hear from you. Let us know if you are the 30,000th visitor.
Thanks so much for all your prayers,
Love,
Kim
PS. Our friend Spencer spent the last two weeks getting lots of radiation, and entered the hospital today for his transplant (which happens next week). PLEASE pray for him and his family. Transplant is not easy...it is very scary. He will be inpatient for 2-3 months, and needs to stay in North Carolina for about 7 months. His website is www.caringbridge.org/ca/spencerrocket.
Tuesday, April 27, 2004 11:29 PM CDT Dear Friends...
Thanks for your prayers! Andrew and I returned home tonight (Tuesday).
His blood levels had gotten low, and today he received a blood transfusion as well as albumin (protein). THANK YOU to the person that donated on March 25th....it was your blood that gave Andrew life today!! Without blood transfusions, leukemia patients would die...it is amazing science, but also amazing selflessness and love that keeps kids like Andrew alive while they continue treatment to beat this disease.
Andrew has been irritable and cranky, he also threw up quite a bit tonight. Please pray that he feels better after a good nights sleep.
He also has gone from having diarrhea...to now being constipated. The methotrexate (chemo) causes the mucus membranes to slough off, which can cause diarrhea, but also can cause some blockages to occur. Please pray that this is resolved tomorrow, as it can lead to more serious problems. (Im sure this entry will embarass Andrew some day...but I cant expect people to pray if they dont know:) ).
Doug and I both had a bad case of food poisoning. While he was home with Christine last night...and I was at the hospital with Andrew...we both had severe vomitting.
Needless to say, the whole family is tired (except little Christine). We are hoping to get a good nights sleep (in our own bed!!)
love,
Kim
Monday, April 26, 2004 3:10 PM CDT Hi Everyone,
We are hanging out in the hospital. Andrew is feeling better (no vomitting today). His fever has also subsided.
His labs showed that his glucose, albumin and proteins are very low, his blood counts also dropped a fair amount from Sunday night to Monday morning. They are doing some cultures to see if they can find the source of the fever. He is on IV antibiotics to make sure they nip whatever it was in the bud.
Once we get labs tomorrow, we will better be able to determine how he is doing, and what (if anything) he needs transfused. They will also be able to get a better idea of when we can return home.
Thanks for your prayers!
Love,
Kim
Sunday, April 25, 2004 7:57 PM CDT **NEWS FLASH** ITS SUNDAY NIGHT....Andrew has a 102 fever...so, off to the hospital we go...will keep you posted....
Hey Everyone,
We have just returned from an exhausting but inspiring trip to Big Bear (local mountains). Im tired, because I watched the Team In Training cyclists ride 50 miles of hills, including one ten mile hill that climbed 2000 feet.
Some of you may be wondering, "Did they ride their bikes on narrow, winding, mountain roads? The ones with no bike lanes?"...the answer, "Yes!!"
The kids and I did our normal routine of following the team and cheering them on. Christine has really perfected her, "Go! Go!" Andrew had a rough time, with bouts of vomitting along the way. In fact, as we were riding to the park to meet the team to start the ride, Andrew got sick. We pulled over, and he threw up all over daddy. Most of it got on Daddy's long-sleeved undershirt....so he cleaned up the best he could, and rode in short sleeves (it is cold in the mountains).
It was a beautiful day, and I've included some pictures.
One picture is with Andrew and his friend Jill. Jill is a cancer survivor. When she was just a girl, bone cancer resulted in her losing her leg. Yes, she is on the team. No, she doesnt use any prosthetic when she rides. No, there are no assistive devices on her bike.
So, when you ride up a steep hill (imagine it if you will...) you put all your weight on one leg, then as that leg cycles downward, you shift all your weight and push down on the other pedal. I dont know how Jill does it....she has to push down with her leg, and then PULL that same leg back up....She is a great example of how wonderful life can be...despite the effects of cancer.
I guess it's only fitting to take this time to encourage ALL of you to join a Team In Training group. They start a new team quarterly....they provide coaches, mentors and support. They are geared for the beginner, but veterans are welcome too.
If you live in Southern California.....consider joining the cycling team. After their June ride in Tahoe, they will be participating in the Cool Breeze Century Ride in Ventura, CA in August. There are informational meetings in the area next week....email me if you want to know where.
Andrew has been selected to be the "hero" for the cycling and triathalon teams this next season. We would love to see our friends join the team...so we could root you on too.
Thanks for your prayers and support!
Love,
Kim
Friday, April 23, 2004 11:33 PM CDT Hi Everyone,
Andrew went to the clinic today for vincristine and methotrexate (chemo). He is hanging in there, doing pretty well, all things considered. His immune level is low...but not critical, and while his blood counts have dropped...they are not at transfusion level.
He got a special treat when he came home....he went to Der Weinerschnitzel (hot dog fast food place) with his Grandma J. They sat outside and Andrew enjoyed his first chili cheese dog. (Im only glad the heavy anti-emetic was working!!)
Tomorrow we leave for the mountains...Big Bear. Doug's Team will be doing a 50 mile ride...and we will be there to cheer them on! We are staying with good friends who have a cabin in the area (Thanks David and Debbie!...that's David Milton...highly acclaimed water color artist!)
Please pray that Andrew is feeling ok. His extreme nausea...coupled with the elevation (and mountain ride), is a risky combination....but we are trusting God to help keep the nausea in check.
We will update you when we return on Sunday.
Thanks for your prayers.
love,
Kim
Wednesday, April 21, 2004 2:56 PM CDT Hi Everyone,
Andrew is doing pretty good. His tummy hurts from cramping....one of the medications causes constipation, another causes severe diarrhea....so he has his intestines and digestive track having a rough time. He is having a hard time sleeping well, due to the tummy aches.
He has a couple of small mouth sores, but they do not seem to be affecting his eating...which is great!!
He will go back in Friday for more chemo....both methotrexate (mouth sores, diarrhea, mucositis) and vincristine (joint pain, constipation).
I will do his labs tomorrow, and will have a better idea about his blood counts as well as his immune level.
We are planning to go up to Big Bear Saturday night, as Doug is doing a training ride on Sunday. It will be a 50 mile ride, that will help him get used to riding up and down hills in the higher elevations.
Christine is finally starting to walk more....she is just so content to sit in one place and smile :) She is also saying more words, dancing and nodding her head "yes" and "no". Andrew is so in love with his sister...they both really make each other happy.
We are happy to announce that another baby is on the way....it looks like early December! One more reason to smile in our family.
We appreciate your support, your prayers, the kind emails and cards we have been sent, all of the donations for the bike ride, and your messages left for Andrew in his guestbook. They really are encouraging to us as we travel this cancer road.
Love,
Kim
Sunday, April 18, 2004 3:59 PM CDT Hi Everyone,
Andrew is hanging in there, feeling pretty good. He is still nauseaus, and throwing up here and there...but able to keep most of his food down.
We are concerned because he has developed some mouth sores. These can progress to a very painful state (some kids stop eating, and need IV nutrition or IV pain meds). The drug causing it is the methotrexate. He will continue to get methotrexate each week for the next two months...and they will increase the dose each time. Please pray that the sores heal up and dont get worse.
On the biking front....Dad had a beautiful 60 mile route scheduled...from Irvine to Dana Point (and everywhere in between!). The kids and I were following along to cheer dad on, but it was pouring rain!! The rain got so bad that I could barely see enough to drive. The cycling team had to call it quits after about 25 miles.....and we shuttled people back to their cars (several miles away).
Next week, they have a ride planned in Big Bear (local mountains). This will help prepare them for the increase in elevation that they will experience in Lake Tahoe.
I have to thank all of you that have donated to the Leukemia and Lymphoma Society in Doug and Andrew's name. We have received generous support from family and friends, neighbors, as well as strangers! We feel very humbled by such generousity and are very appreciative to all of you.
Thanks for checking on Andrew...he loves reading his notes from his friends.
Love,
Kim
Friday, April 16, 2004 9:05 PM CDT Hi Everyone,
Andrew is feeling better. His nausea has diminished enough to keep his food down, although it is still there, which makes him very irritable and uncomfortable. He expresses this via lots of crying and tantrums :0
His counts are holding nicely. His immune level is low, but his blood levels are fine.
Andrew got such a treat at the clinic the other day! He was there to get his peg shot, and while the nurse was preparing to give it to him, he began vomitting. So...while I was washing up at the sink :0 the nurse went to get him a little cup of water.
When she came back to give him the water he mumbled to her...she thought he said "I cant do this"....but I could have sworn what I heard was "caduses"....I turned around from the sink, and sure enough he was saying "a caduses"
She had brought him a little dixie cup of water, and the cup had a caduses on it!!
Well, he was thrilled! We told him if he took his shot, he could have TEN caduses cups as a reward for his bravery!!
So, his little dixie cups with the caduseses on them are his pride and joy right now!
Thanks for all the prayers!
Love,
kim
Thursday, April 15, 2004 1:52 AM CDT Hi Everyone,
Andrew still feels tired and nauseaus, but was able to keep his food down tonight. We are keeping him loaded up with meds to help his tummy....and they seem to be working for the most part (he still gags and complains of "smells" and tummy aches)...but knock on wood he hasnt thrown up.
Thanks for all of your prayers. The meds he is on this phase make him feel just miserable. If any of you remember our trip to Solvang at Thanksgiving (when Andrew threw up at the cafe?)...that was the same phase of meds we are taking now....sort of non-stop, extreme nausea.
I wish there was more we could do for him....but for now, we are thankful that so many are praying for him. Please ask God to minimize this side effect. He doesnt weigh much (27 lbs)...and it doesnt take much to have him needing IV nutrtion or fluids during times like this.
We know it has been prayers from so many faithful people that have kept him strong thus far, and we trust that God will bring him through this too.
Love,
Kim
PS Good news! His spinal fluid was clear!
Wednesday, April 14, 2004 0:00 AM CDT Hey Everyone,
The little guy is having a rough time.
The procedure (spinal) went fine....but he has been throwing up ever since, despite an IV dose of anti-emetics at the hospital. He is home...but has vomitted all over himself (and things) a bunch of times already. As I write this...Andrew is sleeping on a bed (with no sheets or blankets..they are in a bag for the cleaners!), and Doug has gone to the store to pick up a new prescription. We called the oncologist "on call" who gave us something else to try.
Tomorrow he goes back in the morning for the long shot in the leg.
We did not get the results of the spinal yet, Im hoping to get that when I go back tomorrow.
Please pray that he will feel well soon. It is miserable being nauseaus, and even more so when you are little.
Love,
Kim
Monday, April 12, 2004 4:52 PM CDT Hi Everyone,
I just received the results back from Andrew's labs, and they looked good. His marrow is functioning fine, and they will begin his next round of chemo tomorrow.
He will get an lp (lumbar puncture) which includes the chemo given in the spine, as well as checking his spinal fluid to make sure he has not had a relapse. He has not had this check in over 2 months, so please pray that the fluid is all clear of cancer.
The three chemos he gets are Vincristine, which causes the joint pain.....and methotrexate....both in the spine and through an IV. The methotrexate causes mucositis....basically ulcers of the mucus membranes that can effect everything from his mouth all the way down the digestive tract/stomach to his bottom. He will also return on Wednesday to get a Peg....which is the long shot in his thigh.
Thank you so much for all of your prayers and the tremendous support you show us!!
Love,
Kim
Sunday, April 11, 2004 We apologize for the caduses explosion that occured over the weekend. I havent quite figured out how to make the image into a border...and Andrew loved having them all over the page, so I left them up for him to admire over the weekend. (if you missed the page this weekend...it's too complicated to explain).
We had a nice Easter! This was the first holiday where Andrew woke up anxious to see what was waiting downstairs for him....the Easter Bunny left a basket of goodies, and also some eggs to find outside. Andrew was further spoiled, with a basket of treats (including his new favorite....an Archies CD) from Grandma J, new clothes and yummy cookies from his Grandparents in Georgia, AND his friends at church saved up and gave him an old fashioned popcorn maker (super cute!) a big bag of popcorn, and real movie theater popcorn tubs....and more! He was so excited. He feels very loved by his family & friends at Sandals! When he is all better, he will be hosting a movie night with LOTS of popcorn for his friends.
Tomorrow we have labs, and are praying that Andrew's body has recovered from all the chemo and that his counts have started to improve.
We hope you enjoyed this Easter!
Love,
Kim
Friday, April 9, 2004
Happy Good Friday!
We did Andrew's labs, and his counts are still low. Our doctor is not too concerned, and we are hoping that they will improve by Monday so that he can start his next phase on Tuesday.
The chemotherapy kills off the cells, to the point that the production in his bone marrow slows WAY DOWN. This is supposed to happen, it is the purpose of the chemo. Sometimes the marrow has been hit so hard, that it just takes a while before it starts doing it's job again, and that is the situation here.
The threshold to start the new phase is not very high, but it needs to come up enough so that they know his marrow is still functioning.
Andrew is still very susceptible to illness, please continue to pray for his protection.
On this weekend, when we remember all that Jesus sacrificed for us.....we also remember His Resurrection...and our promise of eternal life.
As He taught us, the pain and sacrifices that we go through on earth are temporary, but our life with Him in Heaven will last forever....without pain, sadness, illness, or suffering!
May you experience the Hope we have in His Promise this Easter!
Love,
The Spragues
PS. We are so thankful to report that Spencer has made it to Duke! The little guy suffered a great deal this past month, and his parents did too! God pulled him through, but now he has a pretty major hurdle ahead...transplant!They will be living in North Carolina for at least 7 months, while he undergoes treatment. Please pray for Spencer, pray that the transplant is successful, pray that he is protected from pretty dangerous affects (short and long term). Thanks for including Spencer in your prayers!
Tuesday, April 6, 2004 7:52 PM CDT Hi Everyone,
We thought that Andrew's counts were on their way upwards, but they have fallen again. Not enough to warrant any transfusions, but very susceptible to illness. Please continue to pray for protection.
This will further postpone his next phase of chemo. We are going to redo his labs on Friday, and hope that they come up enough to start his chemo on Monday.
We also found out that Mary, the Nurse Practitioner who does an amazing job with Andrew's spinal chemo...well, she will be on vacation next week. So, please pray that the treatment goes well (this can be a torturous procedure if not done with expert hands).
On the lighter side, Andrew noticed (in the hospital reading materials section) a pamphlet about Medical-Alert bracelettes. There was a big caduses (medical symbol that Andrew is obsessed about) on the flier, and you can order bracelettes with a caduses on them! (also your name and medical info, of course)...well, while most boys want to go to the park and play with trucks...Andrew is nuts over getting one of these bracelettes with a caduses! I think all this medical stuff has done a number on his brain!
Thanks for your prayers!
Love,
Kim
Sunday, April 4, 2004 8:53 PM CDT We are home!!
Thanks for all of your prayers!!
Andrew's immune level (anc) jumped up to 330. It is still considered very low..so he cant go anywhere, but it is on the upswing, so they let us out.
He had some protein (albumin) transfused before we left, so all the counts should be topped off.
We were supposed to start his next round of chemo on Monday, but his counts are not high enough. We will check again and hope that he can start on Wednesday.
He will be getting more spinal chemo, due to the radiation last month he had a break from them. (the two are highly toxic when given "near" each other, infact, some hospitals will not give any more spinals after radiation, because of neurological damage). But we are getting them, so please continue to pray for protection.
The "good" news from the worried mother point of view, is they will check his spinal fluid (they always do when he gets spinal chemo)...and he hasnt had that checked in a while. Please pray that it will be clear. We have no reason to suspect that it wont be (but neither did his friend Spencer's parents.)
Also, he will be getting increasing doses of methotrexate in his spine (he will also get this in his catheter) MTX is the culprit for mucositis...which equals painful lesions in the mucas membranes (most visibly mouth sores...but those same sores are throughout the stomach lining and all of the mucas membranes). Andrew is on the toughest treatment plan, and we were told to expect these mouthsores last time (we were told he would probably get them so bad that he would need a feeding tube)....that never happened, Thank God! The doses he will get this round will be even higher, so please continue to pray for protection of his mucus membranes.
Thanks again for all of your prayers and loving words of support!
love,
Kim
Saturday, April 3, 2004 2:58 PM CST Dear Everyone,
Thanks for checking up on us. We are still in the hospital, and will be here for a while.
Andrew's counts are crashing even lower....and we are getting a transfusion today. His hemoglobin was 8.6 when I checked on Thursday, it was 8.0 when we came into the hospital last night, and it was 7.5 this morning. THANK YOU DONOR# C20535 , Your blood is saving Andrew's life as I write this! (please drop me a line and let me know who you are!) His glucose, hematocrit, and protein levels are also very low...we will keep an eye on them too. His immune level (anc) is also dropping, it is 42 today.
They will recheck things in the morning (sunday), please pray that they will start to head upwards.
On the training front, Doug rode almost 50 miles of tough hills today...and said he felt good. We are so proud of him for being so dedicated to this cause. We would give anything to save Andrew from this disease, but neither one of us is an oncologist. So, we can only do what we can, by raising awareness and funds for research, and offer lots of prayers.
Thanks for your support and love,
Kim
Friday, April 2, 2004 6:25 PM CST Hi Everyone,
Andrew has had a low grade fever, off and on, since yesterday. His anc is 56...pretty low. He is also complaining of increasingly more painful stomach cramps.
So....we are going to head out to the hospital.
Please pray that we can come home sooner than later, and that Andrew remains protected from anything major.
Thanks for all your prayers and support,
Kim
Thursday, April 1, 2004 6:23 PM CST Hi Everyone,
Happy April Fools Day! I hope you all played a good joke on someone today...my old favorite was putting vaseline all over the toilet seat...my dad "fell" for it (literally) every year.....
Anyhoo, I did Andrew's labs today, and his counts are very low. His anc (immune level) is down to 56!! This means he cant fight off anything, so please pray that he stays protected. The tiniest germ, or even his own body's bacteria, could cause him to get a fever....which would put us in the hospital. He cant even go outside...he is pretty much on quarantine right now.
His blood levels (red blood, hematocrit, platelettes) are OK. I wont be doing his labs again until Monday, so let's also pray that they dont drop too low over the weekend (since we arent doing labs on the weekend, we wouldnt know if he needed a transfusion). We will see how they are Monday...he will probably need more blood at that time.
He is (quite miraculously) feeling pretty good. He has some tummy aches, nausea, crankiness....but otherwise is hanging tough!
I have put a new "image" in the photo section. It is a caduses, the medical symbol with the snakes. It is Andrew's newest obsession. When we drive in the car, he is always looking for ambulances so he can see if they have a caduses on them (some do, some dont). At the hospital and clinic, his eyes are peeled, looking for every caduses.
Andrew loves coming to look at his website, to see his pictures, read messages, and even to stare at the caduses!
His little friend Spencer is not doing well right now. He is in a lot of pain, has been spiking fevers, and his blood pressure has been very unstable. They need him to stabilize before they can go to Duke for a transplant. Please keep him in your prayers. You can read his updates at www.caringbridge.org/ca/spencer
love,
Kim
Wednesday, March 31, 2004 0:52 AM CST Hi Everyone!
Andrew enjoyed a special treat this morning, a visit with the Easter Bunny!
With his immune level so low, we could not risk going to a crowded mall and waiting in lines with other kids, so I spoke to the owner of the "easter bunny" (which is the same family that does "santa" at the mall)...and he was so kind to allow us a private visit.
We went to the mall before things opened, and the Easter Bunny came early to meet us. He played with Andrew for a long time, and they had so much fun together.
Christine, on the other hand, was a bit freaked out by Easter Bunny (as you may guess from the photo). She looked so pretty, with her long hair in a headband and her beautiful dress....but you cant notice it in the picture!
I know that usually the girl wears the Easter Bonnet, but this year we got one for Andrew instead....check it out!
We will take another blood test on Thursday, and get a better idea of how Andrew is handling things and when we can begin his next phase of treatment.
Thanks for checking up on him, we sure appreciate the prayers.
Love,
Kim
Monday, March 29, 2004 6:01 PM CST Hi Everyone,
For those "out of towners" I want to start this by letting you know we are in the midst of beautiful (if not too hot) weather. It is 85 degrees today!
Andrew went to the clinic for his last dose of chemo (for this round.) His red blood and platelettes are still doing well (thanks to the transfusions last week). His white blood count (wbc) is low, at .7. This means his immune level is also very low, (anc) 147. We are waiting to see if they rise on their own, or if they drop back down. If they improve on their own, he will start his next round (8 week phase called Interim Maintenance #2) next Monday.
A little tutorial about Complete Blood Count. Last week, Andrew's platelettes were "less than 5" and his HGB was 7.1, and his hematocrit was 22. When he was diagnosed, his wbc was 85,000 (which is one reason he is considered high risk.) Here are the normal values:
Red blood cells (RBC) 4.2 – 6.0
Hemoglobin (HGB)12 – 18 (transfusion when below 8)
Hematocrit 36 – 52% (transfusion when below 24)
Platelets 150,000 – 450,000 (transfusion when below 20)
White blood cells 4,000- 11,000
ANC (infection fighting indicator) must be >1500 to fight infection
We have plans to have a private meeting with the Easter Bunny tomorrow morning....check back soon and Ill post the pictures.
Andrew is feeling pretty good. We are truly amazed at how well he has handled this phase of treatment. The nurse and doctor were remarking today how he never even seems to have symptoms. Most kids are tired, sick, cranky (ok, we get that one), and plain old worn out when they have low counts....but Andrew is like the Energizer Bunny....he keeps going and going and going.
Thanks for all of your prayers that keep my little guy going!
love,
Kim
Saturday, March 27, 2004 3:42 PM CST Hi Everyone,
Boy am I exhausted. I drove around with the kids in the car, rooting Doug on as he trained for his cycling event. They went from Irvine, down through Mission Viejo, over to Laguna Hills, Aliso Viejo, and back through El Toro and Irvine. (For those not from the area....it was a very hilly ride!) I got tired just driving, so you can imagine the sore muscles on Doug.
Andrew really enjoyed the excursion.....we would ride past the cycling team, and then stop at a turn out ahead of them, so that when they road by we could yell, "Go Daddy!" Andrew knows that Daddy and his friends are riding their bikes to get him more medicine to make his blood clean, and it makes him feel good to know that so many people care.
Andrew himself is feeling good. He is still battling nausea, but we are seeing some of his appetite slowly return. He looks like a dalmation, the low platelettes caused a lot of bruising, even his bald head is covered in bruises. He many need more transfusions in the next week or two, but his marrow should start to recover after that.
Andrew is currently making some tough decisions, about which of his favorite songs he wants to put on his website....so check back soon to hear what he picks.
We are thankful to all of you who send us emails, sign the guestbook, call and check on us, support Doug's ride, and pray for us faithfully!! May God bless you!!
Love,
Kim
Thursday, March 25, 2004 9:03 PM CST Dear Friends and Family,
Andrew and I just returned from a trip to the hospital, as we expected, he needed platelettes. The normal level for platelettes is between 150-450, and a transfusion is needed when they drop down to 20. I had thought Andrew's would have been close to 20, as they were 60 on Monday....but when they called they told me they were "less than 5". He can have "spontaneous internal bleeding" when they get to 10.....
So, we scurried over to the hospital, and pumped him up with some new platelettes. They were from the general donor pool, as we do not have any direct donor platelettes for Andrew. I expect him to need blood and platelettes again in the next few weeks....so if you are able to donate platelettes, we would be grateful.
We are so excited that Doug has raised more than 1/3 of his needed funds for the Tahoe ride. So many of you have donated, both online, and by giving us a check directly or in the mail....we really appreciate the generousity.
Andrew is a bit cranky, cries easily.....just not feeling up to par....but after next week (and perhaps some more blood) he will get a rest from the chemo for a week or two before starting up his next phase.
Thanks for all of your prayers, your kind words in the guestbook, and your support in so many ways.
love,
Kim
Tuesday, March 23, 2004 4:07 PM CST Hi Everyone,
Despite being in the midst of a very difficult round of chemo, Andrew is feeling great! He does have some nausea, but we keep him on his zofran, and it seems to do the trick.
He had a blood transfusion last night, and we want to send a BIG THANK YOU to donor #C20519. Andrew got your blood, and we are so thankful for this gift you have given him.
The blood bank said we have a few new donors that match Andrew, THAT IS WONDERFUL!! Please let us know who you are.... We expect Andrew to need platelettes, either by the end of this week or next week. Unfortunately, he does not have any platelettes at the blood bank. Please consider going down in the next day if you think you may be a match.
Andrew has some new pictures up, they are some of the oncology staff at the CHOC clinic. These are the people that God has chosen to be instruments of healing. Included, are doctor Torno, our wonderful oncologist that has done such an amazing job of caring for Andrew. There is also a picture of the Nurse Practitioner, Mary. Mary does all of Andrew's spinal chemos. This is quite a skill! Once Andrew is put in twilight type of sleep, Mary inserts a thick metal needle (think of a little straw!) into Andrew's back....then she drains out some of his cerebral spinal fluid (they test this fluid to check for a relapse). Once that is collected, she hooks a syringe onto the needle, and replaces the fluid with his chemo. Andrew is awake (although sleepy) during the procedure...he can feel it, but doesnt remember it. I have heard HORROR stories from many parents (from other hospitals) about the spinals....but we are soooo thankful we have Mary, as she always does a great job!!
So, a big thanks to the staff at CHOC who provide Andrew with such great love and care.
Also, thanks to our friends and family who continue to pray for us. We are certain that Andrew is doing well because so many of you are asking God to keep him protected as he goes through this healing process.
Thank you too for those that have sponsored Doug, he is working hard, with the hopes that the money we raise will help find a cure for leukemia.
love,
Kim
Monday, March 22, 2004 6:46 PM CST Hi Everyone,
Andrew got his chemo today, and was VERY brave! One of his chemos was the "PEG". This is a long shot deep into the thigh, and then they slowly push in the med. He was great until it came time to actually get the shot, and then he acted like you would expect...screaming and crying and trying to kick (we hold him down.) Honestly, he does a lot better than I would....if you know me, you know I would never have gotten in the car to go to the clinic to begin with, I hate shots!
We just got his labs, and are now going to head back up to the hospital, as his blood counts are low and he needs a transfusion. I am soooo happy that he DOES have direct donor blood, and when we get it I will find out the donor # or date, and will post it up here on this website. We are sooo thankful that so many of you have gone down to donate for Andrew.
He does not have any platelettes at the blood bank, and while he doesnt need them tonight, his platelettes are low, and I expect he will need them in a week or so.
If you are able, please consider donating platelettes. Despite hating shots, I used to donate platelettes on a regular basis (every 2 weeks) before I had kids. It's not so bad, they make you very comfortable....and it's really nothing compared to what these kids go through.
Andrew is feeling pretty good! Thanks for all of your prayers and support!
Love,
Kim
PS. Doug rode 45 miles of hills this weekend!! He is really feeling it in his muscles now.....and as we prepare for the June 6th Tahoe trip...he has some serious training to do. Thanks to all of you for supporting him in the ride!
Friday, March 19, 2004 1:02 PM CST Yeah! The radiation is finished!! Andrew did so well, everyone is proud of him. His Dr. said that in 8 years, he was the youngest patient treated without sedation (not to mention radiation of the head is a little more intimidating with that mask, then lets say, radiation of the leg...in my opinion).
Please keep praying about the effects, when you think of Andrew. Even though it is finished, the neurological effects often dont show up for 5-10 years, and his increased risk for brain tumors and AML (a different type of leukemia) will always be there.
Special thanks to the nurses who were so encouraging and supportive, they really made it easy for Andrew.
Andrew is feeling good. We are keeping him on anti-emetic medicine for the nausea....he hasnt eaten much, but hasnt been throwing up either.
His counts are starting to drop, his immune level is low. He got chemo today, and will go back Monday for more chemo (including the dreaded PEG shot in the leg.)
Thanks so much for all the support!
love,
Kim
Wednesday, March 17, 2004 8:03 PM CST Hi Everyone,
Andrew is doing pretty well. He is having nausea and loss of appetite, but we expected that he would.
He only has 2 days left of radiation. Many of you have asked about this process, we put some pictures up to show you what it is like. There is no pain involved (except for a tight mask). Today, he had some "mesh" shaped bruising on his chin, from the mask.
We are also finishing up our everyday shots. Next week he will only have to go in twice, but one of those visits is for the long, thick needle that goes into his thigh (ouch!).
Thanks for all of you have emailed us, made us meals, sent cards, left messages in his guestbook, and who have supported Doug in his Tahoe Ride!! We know that with each gesture of love, there is someone praying for Andrew...and that means the world to us!!
I have been thinking a lot about the changes we made to Andrew's treatment. Now that we know many of the kids with t-cell are relapsing (and many in the first 6 months!), we feel it was God nudging us to make those changes. We know it was!! The relapses are occuring in the spinal fluid....that is exactly where we added all the extra chemo! We also feel much better about doing this radiation...which again, fights cancer hiding in the spinal fluid/brain.
Little Spencer, Andrew's friend who was diagnosed with t-cell leukemia at the same time as Andrew, is having a VERY TOUGH TIME! This was a happy kid just a few weeks ago, and then he relapsed in his spinal fluid, just a few days before he was set to start his radiation.
He is NOT in remission, despite several weeks of tough chemo. This is devastating news! (we originally thought he achieved remission last week, but further study of the fluid showed the leukemia is still there.) He will get another test tomorrow. In the meantime, he can barely walk or talk...he is pretty sick. His parents are having a difficult time (as you can imagine). Please send prayers for his complete healing!! Also pray for His parents!
You can visit Spencer's page to check up on him or encourage him with a note, at www.caringbridge.org/ca/spencerrocket. They recently put up a new picture of Spencer, one taken before the leukemia. I like keeping our picture up of Andrew from before the leukemia, it helps me remember him before this nightmare hit, and reminds me that he will be healthy again one day.
Thanks for your continued support....and please sign the link for a childhood cancer stamp (at the bottom of this page) if you havent done so already.
love,
Kim
Monday, March 15, 2004 6:10 PM CST Hi Everyone,
Today marked Andrew's 1/2 way point with radiation. He goes every day for the rest of the week, and then he is done. We met with the Radiation Oncologist today, just to go over questions, discuss long term effects (again). Basically, we wont really know how it effects him for years down the road. Cataracts wont show up for at least 5 years, neurological damage will most likely show up as he goes through school (only then will we know what skills he has trouble with mastering), other cancers could happen in the future...so it means a life time of fervent prayers for protection (good way to make sure we dont slack off or take things for granted).
They want to do another MRI of his brain in a few months. The Radition Oncologist feels that the lack of myelination that we saw could be the effects of his spinal chemos, and wants to re-evaluate things in a few months to see how things look (if it has improved, gotten worse, and how it was affected by the radiation).
Andrew had his blood counts taken today. His immune level is dropping quickly, but his blood counts still look good from the last transfusion (Thanks again Troy for giving me your blood!!)
We also want to thank so many of you that have gone down to donate blood.....we appreciate the sacrifice, even if you dont match.
Also, thanks to our friends at Sandals who have made meals for us this past week....it sure makes these busy radiation/chemo days easier for us....what a blessing you all are!
Lastly, Doug is doing a 100 mile bike ride around Lake Tahoe....he wrote a letter at the top of this page. I am really proud of him for turning lemons into lemonade and taking on such an ambitious task. I know when Andrew grows up, and sees what his daddy did for him, he will feel very proud too.
Love,
Kim
Saturday, March 13, 2004 10:16 PM CST Hi Everyone,
Andrew's radiation went smoothly on Friday...he laid down, put on his mask, and let them take his "picture" like a big boy. I think any adult would feel claustrophobic, as the mask covers his face and is bolted down tightly, he can breathe through little holes, but that is it. The machine is pretty big and rotates all around him, making a lot of noise. All the adults are in the other room during the process, but I can talk to him through a speaker.
He is feeling pretty good. His current chemo regimine and the radiation make him a bit tired with some nausea, but overall he is doing well.
We will take his blood counts on Monday, to make sure that his blood levels stay high during this process (there is more risk for neurological damage when the blood levels drop).
Thank you for all of your prayers. Please pray that his body/brain would be protected, that the radiation kills off the cancer...but not much more. Also, the radiation and the particular chemo he is on now can cause him to have fevers....and with even a slight fever we would have to be admitted to the hospital (and if you have read this journal lately, you know Im not up for that again anytime soon.) so please pray that he wont have any fevers in the next few weeks either.
Check out Andrew with Mickey and Minnie in his photo section!
love,
Kim
Thursday, March 11, 2004 2:47 PM CST Thank You! Thank You!!
Your prayers are all working...we had a GREAT DAY (as far as a day when you irradiate your toddlers brain goes....)
We were very concerned about sedating Andrew again, and the radiation team decided we could try to do it without general anesthesia. They still scheduled the anesthesiologist, but thought we could maybe get away with the "twilight sleep" drugs instead of full general anesthesia. As a rule, children 6 and under are sedated, as it is imperative that they not move.
We went early to practice with Andrew, to see if he could lay still. Truthfully, the mask is tight and bolted down, so he couldnt move....but it covers his face, and they wanted to make sure that he didnt freak out.
He did so well the very first time they laid him down, that they decided to go ahead with the treatment with NO DRUGS!!
He did EXCELLENT! That means that he will not need anesthesia for tomorrow and next week either. This is such a blessing!!
Another nice thing I should mention about this new phase, it is the most hard hitting re: his blood counts (which is why he will need transfusions) but it does not make him feel as sick as the past month's meds.
Last month he had severe stomach cramping, bone and joint pain....and those are almost gone.
He will have nausea, vomitting and tiredness, but MUCH less pain for the next month.
So he feels pretty good today.....
God is smiling on the Sprague home....thanks for the prayers.
love,
Kim
Thursday, March 11, 2004 0:16 AM CST Hi Everyone,
It is Wednesday night, and we are all pretty worn out.
The short version of our day.....
Andrew was "pushed out" of the hospital without getting all of his chemo......from there he went to radiation, and had a bad reaction to the sedation. He started grabbing his mouth and throat, unable to breathe or speak, flailing about...he had a hard time, for a while, but they were able to get him some oxgyen and stabilize him. It was hard to see him, unable to breathe, and not be able to help him.
He then went on to get his radiation.
We had noticed the night before that there was good amount of dried blood around Andrew's catheter site (the iv lines that go into his heart). I contacted the surgeon (a very nice man), and he came over and looked at it while Andrew was still sedated from the radiation. He put more stitches in to hold it in place better.
After recovery, we took a trek over to the clinic for the rest of our chemo. (when our doctor heard that the hospital didnt give it to him, she made arrangements for the clinic to do it.) We are lucky that the clinic has a much different "mood" than the hospital, and they made sure Andrew got what he needed.
We were hoping to come home and enjoy a nice evening....
but, Doug got in a car accident on the way home (not his fault..he was rear ended). Doug is fine,luckily there was no damage or injuries to persons.
Mom is exhausted and tired, with a whopping headache, dad too.
We go back early in the morning for chemo and radiation. We are worried about the sedation, we may try to do the procedure without it.
Andrew felt yucky this afternoon, cried a lot. He slept most of the evening and woke up in a good mood.
I must mention.....Mickey and Minnie visited Andrew at the hospital on Tuesday, which was really great!
Thanks for your prayers,
Love,
Kim
Wednesday, March 10, 2004 11:16 AM CST WEDNESDAY, 4:40PM UPDATE
WE JUST RETURNED HOME FROM THE HOSPITAL. ANDREW IS NOW SLEEPING. HE HAD A ROUGH TIME OF THINGS, AS WHEN THEY WENT TO PUT HIM UNDER ANESTHESIA HE HAD A BAD REACTION AND COULDNT BREATHE. HE WAS STABILIZED, BUT WE ARE NERVOUS ABOUT TOMORROW (AND THE NEXT 7 DAYS..AS HE WILL GO UNDER EVERY TIME). WE ALSO HAD (I KNOW THIS IS HARD TO BELIEVE) MORE PROBLEMS WITH NURSING ADMINISTRATORS (NOT GIVING HIM HIS CHEMO YESTERDAY, AND THEN DISCHARGING US WITHOUT IT TODAY...NOT LETTING US STAY FOR IT BECAUSE THEY NEEDED THE BED) I'M HONESTLY TOO TIRED TO GIVE A FULL UPDATE NOW..BUT WILL LATER. THANKS FOR YOUR PRAYERS. DOUG AND I WERE SO FRIGHTENED WATCHING ANDREW STRUGGLE TO BREATHE, AND KNOWING SO MANY ARE PRAYING FOR HIM STRENGTHENED OUR FAITH. LOVE,KIM
Hi Everyone,
We arrived yesterday morning, and had a full day of chemo and a blood transfusion.
Im pretty sure that the blood was from Troy, who works with Grandma Janice. THANK YOU TO TROY!! we sure appreciate it, and all of you that have donated blood (or tried to). Andrew is now out of direct donor blood...and we know he will likely need more (and platelettes too) in the next few weeks, so if you have thought of going to donate, now would be a great time. The number is on this page, I highly recommend contacting the St. Josephs donor program, and they can answer any questions about blood types, restrictions, etc.
In just a bit, we will go over to get Andrew's radiation. He will go under anesthesia, get the radiation, and after recovery he will go back for more chemo. We expect to be discharged later this afternoon.
Tomorrow and Friday we will do the same thing.....come for radiation and then chemo.....and everyday next week too.
Thanks for all of your prayers and support....
love,
Kim
Monday, March 8, 2004 11:28 PM CST Hi Everyone,
Thanks so much for all of your prayers.
When I called for Andrew's labs today, they kept putting me off. Eventually, I was told, that his counts were up, but there was no bed for him. They wanted to postpone his treatment.
This did not sit well with me. We have been told that kids with Andrew's aggressive, (t-cell), type of leukemia are relapsing at a high rate on his treatment plan....and this was the reason they wanted us to do the radiation ASAP. In fact, one of our oncologists wanted us to at least wait on the radiation (give Andrew's brain a little more time to develop), yet when he checked with the study chair, he was told we had no time to wait. So with that in our minds, and the recent news of Andrew's little friend relapsing less than a week before he was to start his radiation....the idea of postponing the treatment until there was an empty bed did not go over well.
After a lot of phone calls to hospital administrators.....they still were NOT going to treat him tomorrow.
Quite honestly, Im tired of Andrew and the other oncology patients being treated this way. We are constantly being put in rooms with kids who are sick, waiting for a bed...this really is unhealthful and unethical. Most cancer wards do not allow other patients on their floor. CHOC is overcrowded and so they have decided to turn the oncology floor into an overflow unit BAD IDEA!
After more phone calls, and a GIANT HEADACHE....I spoke with Andrew's doctor, to tell her we had decided to leave CHOC...and I needed her help to get to another hospital.
I was surprised to learn that she did not even know about all of this. She immediately got on the ball, and we are going to be treated in the OICU (for the oncology kids who are very critical). We go early in the morning.
I cant express how frustrating it is to go through this. We love our doctor and know that she is on our side in this battle against leukemia, but sometimes it feels like the hospital itself is part of the battle.
We start early, and will spend the night....with the plan to come home Wednesday afternoon/evening. After that, we will go everyday for this week and the next.
Thanks to all of you for faithfully praying. Please take time to ask God to protect Andrew's little brain. He will get very sick, but we know he will recover from that, it is the neurological damage that can occur that frightens us.
I will try to update from the hospital.
love,
Kim
PS. Andrew's friend Spencer had his spinal fluid tested. The cancer has decreased, but still not gone. The doctors are not thrilled with this result, but are glad it is going in the right direction. There is some concern that it could be resistant to the chemo (since he relapsed despite being in the middle of treatment)....please continue to pray for full remission(he needs to be in full remission in order to go for a bone marrow transplant)..his next test will be Thursday.
Sunday, March 7, 2004 9:05 PM CST Hi Everyone,
With the beautiful weather we have been having (In the 80's), we decided to take a trip to the great outdoors. We had a bunch of rain last week, and the mountains are covered in snow, so that was our destination.
Thanks to friendly neighbors, the kids were outfitted in snowsuits....and we took them for a sledding adventure. Christine, as it turns out, is quite the daredevil! She went down (a tiny slope) all by herself several times...laughing all the way!!
Andrew's time was more bittersweet. He has been vomitting a lot, (and mom forgot the anti-emetic medicine)...so we saw quite a bit on our trip. He did have moments of joy...it was just sad to see it clouded by the nausea.
We are doing his labs in the morning, and praying that his counts are high enough to start radiation on Tuesday.
Thanks for your prayers for Andrew and our family, we hold on to them dearly,
love,
Kim
PS. Please continue to pray for Andrew's friend Spencer. He relapsed a over a week ago, and they are having a hard time getting him into remission. You can visit his site and leave him a message at www.caringbridge.org/ca/spencerrocket I know it will encourage his family.
Wednesday, March 3, 2004 6:11 PM CST Hi Everyone,
We have had yet ANOTHER change in plans. Andrew's counts have not recovered (the chemo hits his bone marrow pretty hard, and it takes it a while to start making blood again.)
Initially they wanted to wait until next Friday, but after they talked to this worried mom (the thought of waiting scares me...as I irrationally worry about a relapse)..they decided that we will try for the beginning of the week.
Our new plan: Do labs on Monday, if they are good, then we will do a long day of chemo and blood transfusion no Tuesday. His radiation would begin on Wed.
He would have chemo on T-F of that week and the next, and have radiation on W-F the first week, and M-F of the second week.
The good news about all of this, is that Andrew gets a break. The down side, is that it is very difficult emotionally to prepare for this and then have it postponed. Additionally, there is a lot that goes into coordinating clinic visits, blood draws, blood donors, hospital appts, radiation appts, child care, etc.....and it is hard to start from scratch and try to get everything set up all over again.
Thanks to all of you for your continued prayers and support. Our Family and friends, church family and neighbors have been so wonderful and we really appreciate all that you do for us.
love,
Kim
Monday, March 1, 2004 6:31 PM CST Hi Everyone,
We have had a change in plans...Andrew's blood counts are too low to begin radiation & chemo, so we are postponing things a couple of days. Our hope is that they will have improved by Wed....and we can start on Thursday.
If that happens, he will have radiation Th/F (4th & 5th), M-F (8-12th), & Monday the 15th.
His chemo will be Th-Sun (4th-7th) & Th-Sun (11th-14th)
That means he will be getting treatment everyday for 12 days straight, not to mention that he goes under general anesthesia each time he has radiation.
Thanks for your prayers, this really is hard on his body, and we are thankful that so many are asking God to protect him.
I will update on Wed. and let you know if his counts have improved as we hope.
love,
Kim
PS. Andrew's friend Spencer had a bone marrow test today, and the good news is the leukemia is not in his bone marrow (it is in his central nervous system). This improves his chances for a successful bone marrow transplant. Thanks for praying for him, and please continue.
Saturday, February 28, 2004 8:57 AM CST Hi Everyone,
Andrew is having a nice weekend. He is complaining of stomach aches & leg pains (the chemo that can cause deterioration in the bones is the likely culprit), but overall is doing good.
We want to give a special THANK YOU to Andrew's friend Emily!! The CHEESE CARE PACKAGE was so thoughtful....(a cheese care package contains; Mac n Cheese, Cheetos, Cheezits crackers, Cheese chex mix, Cheese flavored potato chips, Cheese Whiz, and other cheesey snacks)
Andrew has already made a HUGE dent in these goodies, eating them constantly, and waking us several times in the night for them.
The good news is #1 he is eating! and #2 his last dose of the steroids was Thursday...it takes a couple of weeks to get out of his system, but there is light at the end of the steroid tunnel.
The new park across the street from our house has finally opened, and Andrew and Christine plan on checking it out again today.
Thanks for your continued prayers!
Also, please say a special prayer for Andrew's friend Spencer. They have the exact same high risk type of leukemia, and are the same age, and Spencer was diagnosed just a month after Andrew. Both were scheduled for radiation next week....but Spencer relapsed a couple of days ago. This means his parents are quickly trying to make plans for a bone marrow transplant....visit his website and let them know you are praying www.caringbridge.org/ca/spencerrocket
Love,
Kim
Thursday, February 26, 2004 3:08 PM CST 8pm update**
We just found out that one of Andrew's friends has relapsed. His name is Spencer. He and Andrew are the same age, and were diagnosed with the same type of high risk leukemia. They were even diagnosed at the same time.
Please pray for Spencer and his family, and I know they would feel encouraged to get a note in their guestbook, letting them know people are praying. As you can imagine, they are devastated right now...and so are we.
www.caringbridge.org/ca/spencerrocket
Yeah! We are home!
Andrew's cultures didnt show anything, so we were able to come back home.
While we were there, they gave him some IV protein, as his was low. His blood counts are starting to drop too, so we are keeping an eye on them, as they need to be at a certain level to start radiation. I was also told if his counts are low during radiation that it can cause more neurological damage. This concerns me, since he will also be on chemo that is knocking down his counts...the doctor said we will just do a lot of labs and keep an eye on him.
We are just thrilled to be home....last night we were moved AGAIN....guess who our new roommate was? A very dear boy, who had a FEVER, RASH, and PHLEGMY COUGH!!
This is just unacceptable and so dangerous for Andrew! I made my way up the ladder and spoke with the Executive Director of Hospital Services. She said she would look into things. The hospital is crowded, but efforts are just not being made to make sure the cancer kids are safe.
Probably not getting any "Favorite Parent" awards from the hospital staff....but the person that matters is Andrew.
Thanks again for all of your prayers!
love,
Kim
Thursday, February 26, 2004 1:17 AM CST Hi Everyone,
We are still here in the hospital.
Andrew is feeling better. They took a bunch of cultures, and we are waiting to see the results.
Here is another "leukemia lesson"...if Andrew gets a fever, or any weird thing...like intense stomach cramping..they worry that he could have a virus, bacteria, or stomach blockage.
We all come in contact with bacteria everyday, and our body naturally fights it off (we usually dont even get sick or know it...). With a low immune system, Andrew can not fight off these normal things...his body will try, by getting a fever or getting sick, but it cant win, and very quickly can turn into a life threatening concern. For this reason, they try to find out if it is viral, bacterial, or something else, and treat it in the hospital under close watch.
The chemo does a real number on his tummy, basically sloughs off his intestines and other goodies (resulting in weird poop). This can cause a blockage in the intestines, or really bad constipation, both which can lead to a bacterial problem, and his body doesnt have the immunities to fight it off. So, it is very important that they "keep things moving"
After a couple days of weird poop, Andrew became constipated (Tuesday)...we only know that, because he finally pooped tonight (Wed.)
They took samples to culture (they already took blood and urine samples)...and it takes a while for the results to come back.
So..he could have some virus or bacteria in his intestines....he could have just been blocked up. Hopefully we will have more info tomorrow (Thurs.)...
On another note, we have had a very difficult time in the hospital. We are on the 3rd floor, which is the oncology floor. Due to the compromised immune systems, there should be strict rules about visitors, etc. Also, we are one of the only oncology wings I know of that has shared rooms.
The hospital has been over capacity, and so we have a lot of non cancer kids on our floor. This has been a real sore spot for a lot of families...as the non cancer families dont understand the issues re: cancer kids with a low immune system. They bring in LOTS of visitors, etc.
On our first night in the hospital, we finally got in a room at around 11pm. By 7am we had been moved FOUR TIMES, Andrew didnt get his chemo Tues night, didnt get dinner, didnt even get breakfast Wed. morning, not to mention that he didnt get much sleep!
On top of it all (and the reason for one of the room changes)...we were placed in a room with an extremely self centered family. A teen boy with apendicitis and his mother had the TV blaring & all lights on at 1am. I asked if we could turn the TV down and turn some of the lights out, and she yelled at me about how her son didnt feel well and could do as he pleased. She then asked with a laugh and a smirk, "WHY?".....I explained that my 3 year old was in a lot of pain, had cancer, and it was important that he get his rest. She went on another tirade about how her son deserved to do what he wanted since he was sick, and I had to leave the room!
They eventually moved us to another room (and then another....)
It is hard to try to do your best for Andrew, battle all that goes with this disease (physically and emotionally) and then spend time in a place that you really feel is detrimental to his care.
Luckily our doctor has been very supportive, this seems to be a big issue between the doctors and nurses/administrators.
Please pray for Andrew....and for the quality of care he is getting at CHOC.
Also, please pray that he can quickly fight off whatever is going on in his system, as he needs to have good counts to start his radiation on Tuesday (we dont want any delays...)
Sorry this was soooo long.
love,
Kim
Wednesday, February 25, 2004 2:01 AM CST Hi Everyone,
We are back at CHOC. Andrew's tummy aches progressed to the point of non-stop screaming, and we were admitted to the hospital late Tuesday night.
I dont know anything at this point, but will write more when I do.
Thanks for your prayers!
Love,
Kim
Monday, February 23, 2004 4:11 PM CST Hi Everyone,
The morning started off early, as we were at CHOC by 7:00 am. We were admitted and ushered over to the surgicenter (but he did not have surgery) to meet with the anesthesiologist...He was put under, and they took him in to make the mask at around 9am. By 9:45, he was on his way to recovery, and we were able to leave the hospital at around 11:30. Not too bad on time.
I spoke with the Radiation Oncologist, and he explained that the myelin really provides no protection from radiation, as the radiation goes to all layers of the brain, actually changing the DNA make up of the brain cells (not pleasant to hear!) (FYI, the chemo also changes the structure of Andrew's DNA, weird to think that his DNA is now totally different.....I'll have to ask more questions about THAT sometime later.) So.....silly me for worrying about delays in myelination.....
He did discuss a bit more about where he will be radiating and the possible effects. I did not know that the area would include the back part of the eyes, (one possible side effect here is cataracts)...as he started talking, I just cut him off, it is not easy to listen to this type of information....we pretty much know the possiblities, and are just trusting and praying that God will provide Andrew with protection.
Andrew was a trooper. His food cravings kicked into gear full strength last night...he woke up several times in the middle of the night, asking if he could have taquitos with cheese....at times the conversation went off on tangents about the cheese:
"did you buy the strings (grated) of yellow and white cheese"
MOM" "yes, I bought the grated yellow and white cheese"
Andrew: "I like the yellow cheese. I like it on my burgers and my hot dogs, and my fries, and it is good on taquitos too."
"And....I think I dont like the white cheese as much, because sometimes it turns green."..."BUT, I LOVE the yellow cheese."
"CAn we go to Islands tomorrow for cheese fries?"
MOM: "yes" (at 2 in the morning, you will say anything to get your kid to stop ruminating about cheese!
The cheese converations went on throughout the night. By the time we left for the hospital, a tantrum was brewing, because we didnt make him taquitos with cheese for breakfast.
By the time we were in the surgicenter, EVERYONE knew that Andrew was STARVING....they dont know he is on steroids, and so attributed it to not getting breakfast (he couldnt eat before going under anesthesia)....
We were happy when it was all done....he came out of the anesthesia screaming for food....I ran and got some chips from a vending machine to hold him over.
Of course, on the way home, he wanted McDonalds Nuggets.
By the time we got home, he was having terrible tummy aches (and a lot of icky chemo poop)...and ended up not eating at all!
He is napping now.....
Thanks for all of your prayers!
love,
Kim
Saturday, February 21, 2004 4:34 PM CST Hi Everyone,
Andrew is feeling much better today. He isnt sleeping as much as he had been (pretty much slept the past 3 days straight). He stills complains of tummy aches, and we keep him on the anti-nausea medication, but all in all he is feeling OK.
He goes back in Monday for his radiation mask to be made. I will have a chance to talk to the Radiation Oncologist. We still have some questions, because Andrew's most recent MRI shows that he has some "delays" re: the myelination in his brain.
In basic terms, the neurons in the brain are covered by a fatty protector called the Myelin Sheath. This protective covering allows the neurons to communicate with eath other clearly (the clear transmition of the electrical signals), and it protects the neurons from damage too.
Andrew's MRI showed that not all the neurons have been completely covered by the myelin. (Most kids his age do not have complete covering, but we are concerned that he may have less than expected for his age.)
As an example of the importance of the myelin, Multiple Sclerosis is a disease where the myelin becomes lost or damaged (the body attacks itself)...and the result is that the neurons in the brain cant do their job...and they misfire and can become damaged.
Andrew does not have MS, and he is not at risk for MS....I just wanted to give a basic understanding of what the myelin in the brain is and what is it's purpose.
Because it is a protective covering, we of course would like to see the entire brain completely myelinated before doing radiation, it would just be extra insulation or protection to the neurons.
Our doctors have told us that this "delay in myelination" is typical in young children (since their brain is not fully developed), it is one of the reasons why radiation on young children is very risky, but it is not a reason to postpone radation.
They are not concerned about Andrew's current brain functions, as he did very well on all of his psychiatric testing, so there is currently no problem re: this myelination issue.
Again, still going to discuss some of this with the Radiation Oncologist on Monday (different doctor than the regular oncologist.) We want to find out a little bit more about the areas affected, the risks, and how the lack of myelination may factor in to things.
Please pray that his explanations allay our fears, and please pray for extra protection for Andrew as he goes through this process.
His radiation dates are currently set for March 2-5 & 8-11.
Sorry for the boring neurology lesson....
love,
Kim
Friday, February 20, 2004 10:59 AM CST Hi Everyone,
Thanks for all your continued prayers.
Andrew isnt feeling good right now. He slept most of the day yesterday, and when he is awake there is a lot of crying as he doesnt feel well. He has also been throwing up.
He goes in Monday to be fitted for his radiation mask. He will go under general anesthesia, as it is important that he doesnt move during the making of the mask....it needs to be form fitting. When Andrew gets his radiation, the mask will be bolted to the table to make sure he doesnt move.
I am leaving up the link for the childhood cancer stamp....please sign this petition, and ask others to do so as well.
We appreciate your prayers,
love,
Kim
Wednesday, February 18, 2004 0:43 AM CST Hi Everyone,
Andrew goes in for his next round of chemo tomorrow (Wed.). He has been very irritable, crying, sobbing at the drop of a hat. It is so sad to watch, because I know he just feels awful and has no other way to express it. We have met older kids (teens) on the same treatment plan as Andrew, and they describe having all of their bones ache, severe stomach cramping, fatigue, irritability etc. Andrew isnt old enough to tell us all of that, but it shows in his crankiness.
Then he has those moments where he smiles, kisses his sister, or says something hilarious.
I have to brag here....the little guy that was spitting out his meds 6 months ago....well he can now swallow 4 pills at a time, with one quick swig of root beer!!
Please pray that his body stays strong while the cancer is kept at bay....it is such a fine balance.
We expect that his counts will continue to drop, as he will continue to be hit with heavy chemo through March. (then he gets a week or two off....and starts more chemo!)
Thanks for your continued prayers, and thanks to everyone who signed up for the Childhood Cancer Stamp....pass it along, I will keep the link at the bottom of the page.
Take a moment to listen to the song (link on top of page) by Mark Shultz. It was written for a boy who was battling leukemia...and is a good expression of what it is like to watch your child suffer with this illness.
Love,
Kim
Friday, February 13, 2004 11:00 AM CST Hi Everyone,
We added a song to Andrew's page, I hope you all like it. It was written about a boy with leukemia, who is now doing well!
Andrew is hanging in there....lots of irritability, aches and pains, nausea, and getting tired easily....all mixed in with his normal energetic moments. Overall he is doing well, considering what he is going through.
I added a link to the bottom of the page, regarding a commemorative stamp for childhood cancer. People have been petitioning for it for several years, and the postal service has responded that there is not a need (how rude!). Personally, I think if they can make those stamps with old cars on it, and tweety bird, and elvis, why not make a stamp that will help children?? Childhood cancers are the number one killer of children....I think they deserve a stamp :)
Please click on the link and sign the petition, more awareness means more funds and hopefully a cure!
Thanks for all of your prayers & support.....on this Valentines Day we think of our dear friends and family and are grateful for the love you have shown us.
love,
Kim
Tuesday, February 10, 2004 12:59 AM CST Hi Everyone,
The morning started off well......
As we walked down the stairs, Andrew said, "Mommy! Mommy! Im walking down the stairs like a big boy! My feet dont hurt and Im not gonna fall!"
Even though Andrew has been able to walk up and down the stairs like a "big boy" for 2 years, the medication causes a lot of muscle pain and weakness.....making it difficult for him to walk. It was such a blessing this morning to hear him say that his feet didnt hurt anymore.
Now that he is starting to feel a little better.....we go back in for the same icky meds tomorrow. Please pray for protection...as the meds have a cumulative affect.
He will continue to be hit hard with very strong chemo for the next two months....and we expect he will need blood and platelette transfusions during March.
Thanks for your continued prayers and support. Please pray for all families of children with cancer. We have met several families on this journey, and some have children that are not doing well right now....please pray that a cure would be found so that others dont have to suffer through this.
love,
Kim
Sunday, February 8, 2004 11:09 PM CST Hi Everyone,
Andrew was able to have a special treat today and go to church (sort of). He kept asking if we could go inside and listen to the music...he loves listening (and dancing) to the praise music. We didnt go inside, instead we met outside (germ free environment) and had a Q&A time with some of the kids from church.
The children at our church have been so faithful in praying for Andrew and we are just sure that is why he is doing so well. We spent time explaining about Andrew's treatment and answering questions that they had about Andrew and leukemia. Andrew acted a little shy (and a bit silly), but he really enjoyed being able to tell the kids about how he takes his medicine and draws his blood.
Please pray for Andrew, as he is feeling a lot of aches and pains. He has slept for most of the day, and when he is not sleeping he is irritable and complaining that he doesnt feel well. He is also nauseaus and throwing up off and on, despite his anti-nausea medicine. He goes back on Wednesday for more chemo.
Every now and again, I go back through and read the journal pages on this website. I cant believe that Andrew has been going through this treatment for 6 months, it seems like just yesterday that we received the devastating news of his diagnosis, and yet it seems like ages ago.
Thank you to our dear friends and family that have carried us through this time. Life gets so overwhelming that we dont get the chance to thank you all the way we should....but we thank God for you several times a day and ask Him to bless you!
love,
Kim
Saturday, February 7, 2004 5:34 PM CST Dear Friends and Family,
Andrew is doing pretty good. He is starting to feel the medication.....still has energy but tires easily and naps a lot now. His moods are changing and we are seeing more tantrums. We havent seen the surge in eating yet, as he is still feeling nauseaus from the tough chemo he got this week.
He went to get his peg shot today, and was so brave! He was very compliant and only cried briefly. This is a very long shot that goes deep into his leg.
We are sad to mention that Andrew wont be getting another sibling as we expected. The baby has already gone to heaven, but we are hoping that soon we can be joyously waiting for a new brother or sister.
Thanks for keeping us in your prayers,
love,
Kim
Wednesday, February 4, 2004 8:04 PM CST Hi Everyone,
Well, we made it home :)
Andrew is feeling good, still has lots of energy.
He started his delayed intensification today (if you go back in the journal history and get the update from a few days ago, it will explain a little bit about this phase.)
Thank you for your prayers and thoughtful emails!
We also appreciate the messages you put in Andrew's guestbook. He asks for us to read us his "emails" before he goes to bed, and they always make him feel special.
love,
Kim
Tuesday, February 3, 2004 6:08 PM CST Hi Everyone,
It's Tuesday evening, and we are still here. Andrew was supposed to start his next phase of chemo today, but it has been delayed.
They took some blood cultures, and are waiting to see if they come back positive for any infections. He has been on an IV antibiotic since we arrived last night.
Hopefully the cultures will be clear by tonight (they take at least 24 hours), which would mean that he can start his chemo in the morning.....and get out in the afternoon.
Thanks for all your prayers!
love,
Kim
Monday, February 2, 2004 3:27 PM CST Dear Friends and Family,
Andrew was able to go to the park to play with friends today...and he wore himself out running around. It is so nice to see him having fun.
Tomorrow begins a new phase in his treatment, "Delayed Intensification". This is a very difficult phase, and it will last two months.
He will be back on steroids, dexamethasone. This is the drug that causes non-stop tantrums and non-stop eating. Lat time he was given prednisone, this time he is on the dex, which is 10 times stronger. It can also cause very serious side effects. Many children develop Aseptic Necrosis, which is a destruction of blood supply to the bones. It literally can put holes in the bones, cause osteoperosis, brittle bone disease, and some children need joint replacement.
Andrew will be receiving more Vincristine. This is the med that causes severe joint pain. When he was first diagnosed, he needed morphine in order to eat, as the vincristine caused pain in his jaw. It also has caused pain in his feet and legs. The neuropathy (nerve damage) that has caused Andrew's muscle weakness in his legs is also from the Vincristine.
Andrew will be receiving Doxorubicin. Amongst other things, this drug can cause serious heart damage. Andrew will be getting an Echocardiogram and EKG this week, and they will continue to monitor his heart throughout his treatment.
Andrew will be getting other drugs as well during this time...they all have a whole list of scary side effects. All of them can cause nausea, vomitting, stomach aches, ulcers.....
Please continue to pray for protection and healing for him.
We expect that his blood counts will be very low, probably around the beginning of March. We are anticipating that he will need blood and platelettes at that time. Please consider donating blood, as the supply is low.
Andrew will begin his radiation the beginning of March.
Thanks for all of your prayers and support!
love,
Kim
PS. It is now almost 8pm on Monday, and we are on our way to the hospital, as Andrew has a fever. Please pray that it resolves itself quickly and we can return home soon.
Friday, January 30, 2004 11:15 AM CST Hi Everyone!
Andrew is doing well and enjoying a small break from the chemo. His Grandpa from Georgia and Aunt Jenny are here, and he is very excited to spend time with them. Unfortunately, Grandma was coming down with a sore throat and so was unable to make the trip.
Today they are all going to Dana Point Harbor to look at the tall ships. Andrew loves getting a chance to run around outside.
I have come down with a miserable cold! So I am trying to keep my distance from Andrew (I wont be going to the Harbor)..and hopefully will be over this soon. I find it interesting, that last time we were in the hospital Christine got the flu....and after this last trip I caught a cold. Definitely one more reason that we dont like going to the hospital (catching all the cooties from sick kids!)
We are gearing up for Christine's birthday tomorrow....Andrew is excited to make her cake and help her open her presents :)
Thanks for your prayers,
Love,
Kim
Tuesday, January 27, 2004 9:44 PM CST Yeah! We are home!
While we love CHOC and the great care we receive....we are soooo thankful to get to cozy up on our own couch to watch tv, and sleep in our own cumfy bed!
They let us out tonight....and we will return tomorrow morning.
Thanks for all of your prayers!
Andrew is doing well.....he is VERY excited that his "Grandpa and Grandma from Georgia" and his Aunt Jenny are coming on Thurs. He is also excited that Christine is turning "1" on Saturday....as he wants to make her birthday cake for her (he even found the Tigger and Pooh that were on his 1st birthday cake, as he wants to make sure they are on her cake this year.)
love,
Kim
Tuesday, January 27, 2004 2:38 PM CST Hi Everyone,
We are still here in the hospital, and will not be going home today, as they want to do some more tests.
Andrew feels fine. He is laughing and playing a lot.
Thanks for your prayers!
Kim
Tuesday, January 27, 2004 7:19 AM CST Hi Everyone,
I am writing this from the hospital.
We brought Andrew in to undergo some tests, in order to better monitor some of the side effects from the chemo.
He is doing well, and we are hoping to go home later today (Tues.)
I'll write more later, just wanted to give an update.
Thanks for your continued prayers,
love,
Kim
Thursday, January 22, 2004 11:56 PM CST Hi Everyone....
First things first....We are expecting a baby in Aug/Sept. Andrew is sooo excited about the baby in my tummy!
Christine has brought so much joy into Andrew's life, and has made these past 6 months tolerable for him. They play together, he takes care of her, when he was sick in the hospital she was the only thing that could make him smile.
We know that this new little life will bring additional blessings to our entire family.
Andrew is doing pretty well. We had a bit of a scare last night, as he hit his head on the front porch and immediately began vomitting. Thankfully he had an unusually high platelette count, which prevented any internal bleeding (which is always a concern for kids with leukemia). His vomitting also subsided....so now he just has a giant bump & bruise.
Thanks for checking in on Andrew and for keeping him in your prayers. He loves all the new notes he has received.
You may notice that the fish are gone...and now it is turtles. He is having fun making changes on his page.
love,
Kim
Wednesday, January 21, 2004 6:47 PM CST Hi Everyone,
Andrew went to the clinic today for a "quick" check-up, since he gets a break from chemo. 6 hours later, we were on our way home.....While we were there, the doctor decided that he needed a blood transfusion.
Andrew (like most kids with leukemia) always has counts that are low-critical for the normal person....but that is what is to be expected from the chemo. We keep an eye on things, and when they get too too low, we do transfusions of one sort or another (red blood, platelettes, protein, calcium, etc.)
The good news, is that he feels so much better (not as cranky) when he gets a transfusion.....easier to breathe...more energy :0.
Thanks for all the sweet messages, and for the prayers.
The doctor remarked again today, how well Andrew has done. We just finished his "Interim Maintenance" phase....and we were thinking back to the beginning of the phase, when Dr. Torno warned me that since we were adding the extra chemo, he would certainly be very sick, with mouth sores, hospitalizations, low counts, etc. Well, here he is at the end of phase check up....looking GREAT!
We both agree that it is the power of prayer....all of you that are asking God to protect Andrew as he goes through this healing process.
I really appreciate the sincere love and caring that so many of you have shown us!
love,
Kim
Tuesday, January 20, 2004 1:37 PM CST Hi Everyone,
Well, Doug and I had our consult with the psychologist today, to go over Andrew's test results. Im going to go ahead and brag here (It is Andrew's website after all)...and tell you that the testing only confirmed what the rest of us knew...that Andrew is an exceptionally gifted child. His non-verbal reasoning in particular, is nearly off the charts.
We believe these gifts come from God. When He created Andrew, He blessed him with intelligence for a reason...we believe it is part of the larger plan that He has for Andrew.
Andrew's chemo, especially those given intrathecally (via spinal tap into the cerebral spinal fluid that surrounds the brain) and the radiation (which is directed at the brain), are both known to negatively effect the brain. These effects are not expected to be seen until 4 or 5 years down the road.
Please pray that God will protect Andrew's brain, as He uses the chemo and radiation to heal him.
We know that since God has gifted Andrew....it is up to God to allow him to continue to have these gifts. Please pray that Andrew does not suffer the long term disabilities that often come from the treatment.
Andrew is feeling ok. He is irritable, but that is to be expected right now. His vomitting has subsided, but still happens occasionally.
Thanks for checking up on him. Andrew loves his website....He picked the fish on this page! He now likes me to bring him up to see his page and read him the messages....so feel free to send him a little note in the guestbook...they are read to him.
love,
Kim
Saturday, January 17, 2004 0:22 AM CST Hi Everyone,
I had a rough week, because I was throwing up a lot more than usual. Thanks Aunt Kelly for the Bed, Bath & Beyond gift certificate that you gave my mom for Christmas.....I threw up on all the pillows, and she used it to get us new ones :)
There has been a real positive this week.......it's called KARAOKE!
Our new nanny moved in, her name is Heidi. She is very nice, but more importantly, she has a karaoke machine that she lets me play with. I have sung "Splish Splash I was taking a bath" (just like in the movie with the dog that plays basketball...[AIR BUD]) ..I have sung it about 276 times already. Im now in LOVE with karaoke!
Thanks to everyone that is praying for me....
love,
Andrew
Wednesday, January 14, 2004 6:45 PM CST Hi Everyone,
We met with our doctors today, and we realize that radiation is a necessary evil. The radiation will be concentrated and directed at the brain, as the leukemia likes to head in the cerebral-spinal fluid.
Doug and I have spent the past few months trying to find a way out of it. Searching articles, talking to other families, getting medical opinions.....and as much as we would like to forego it, we know that we cant.
Andrew's leukemia is very aggressive with a high rate of relapse. If this were to happen, there would not be a good outlook.
Doug and I often hear, "Leukemia is really curable these days!". It is true that it wasnt long ago that leukemia was always fatal. Nowadays, there are kids that survive! But as one person put it, this is no longer a disease that is cured or not cured, even for the survivors it becomes a lifelong illness, because of the long term side effects.
One of the miracles of treating leukemia, is radiation....it is one of the reasons that many kids survive. It is also the reason that children suffer from future cancers, brain tumors, brain damage, loss of IQ, learning disabilities, serious organ and hormone problems.
These effects are not expected to be seen right away, in fact they usually appear down the road......10 years or so.
The same concept really applies to the chemotherapy too. The side effects are quite serious.
Andrew will be going in for an EKG and Echo, to test his heart. The chemotherapy can cause serious heart problems, and we need to monitor how he handles it.
We believe that God gifted Andrew with many things. He is bright, clever, curious...and we know that what God has given, no man can take away!
Please pray that God heals Andrew completely, and that He protects him from the dangerous side effects.
love,
Kim
Monday, January 12, 2004 10:53 AM CST Dear Friends and Family,
Thank you for your continued prayers!
We have a meeting arranged to speak with 2 of Andrew's oncologists; his primary oncologist Dr. Torno, as well as Dr. Kirov who is a veteran in working with pediatric leukemia. Our meeting will be this Wednesday at 2pm. Please pray for us during this time...that the information we receive is from God and that there will be no confusion re: what steps to take for Andrew.
Andrew is doing pretty well. Tomorrow he will go for his last round of chemo for this phase (Interim Maintenance #1). Two weeks from tomorrow (provided he recovers by that time) he will begin his Delayed Intensification #1. This will be a repeat of the hardest chemos that he received in the beginning.
PLEASE DONATE BLOOD. We expect him to need transfusions during the two months of delayed intensification...so please consider donating!
Christine is completely over her flu....and doing great.
AND....yesterday, we had a belated Christmas Celebration with Pappa Frank and Grandma Denise...and guess what Santa had left for Andrew at their house????
A TIHAR! Grandpa showed him just how to hold it on his leg and how to strum. Andrew has carried it around ever since....insisting that he bring it to bed (we kept it next to the bed!) and wanting to play it first thing when he woke up!
We appreciate your lifting Andrew up in prayer!
love,
Kim
Thursday, January 8, 2004 12:19 AM CST Hi Everyone,
We will not be going to St. Judes. The doctor that we wanted to meet with does not do face-to-face second opinions (too busy), but did speak at length with our oncologist.
The unfortunate aspect of that, is that it does not allow Doug or I to ask questions, or get any sort of detailed information.
We have received information from different sources, that the treatment plan Andrew is on does not seem to be adequate for t-cell kids. Our doctors have told us that the t-cell kids are relapsing at a high rate, and we know that once a t-cell kid relapses, his prognosis drops quite low, as it is difficult to bring them back into remission. Even if remission were possible at that point....it would take us down the bone marrow transplant route, which again, does not have the greatest success rate for kids with Andrew's type of leukemia.
Doug and I feel strongly that we need to sit down with our oncologists and weigh things out. To be able to ask questions, compare options, and consider the possible effects.
We are at a fork in the road, and both paths travel through places we dont want to go.....with dangerous lasting effects. We just need to make sure we take the one that leads to life.
Please pray that we can meet with our own oncologists to discuss the options, and that God leads us to a final decision, and that we have His peace about it.
We appreciate all of you for keeping us in your prayers.
love,
Kim
Tuesday, January 6, 2004 0:59 AM CST Dear Family and Friends,
It's been a little crazy around here.....
Christine came down with the flu...poor little sweetie was throwing up and running a fever. Just when she started to be feeling better...she decided to have some poop explosions. I wont go into the gorey details, but they were pretty nasty. Then...I thought we had that under control, and she began with the throwing up again! The good news is her fever has gone down...and Im just praying that she is on her way to recovery soon.
Andrew does not have the immune system to resist the flu, and it could be very dangerous for him to get sick. He spent the weekend at Grandma J's house (she took off work Monday too...so he got the extended weekend version). This was a HUGE help, and allowed Andrew to stay away from Christine when she was most likely contagious. We are doing our best to make sure that nobody, especially Andrew gets contaminated with this yucky flu.
As I mentioned last week, our insurance denied our request to go to St. Judes for a 2nd opinion. Doug and I both feel that it is important that we go, and have decided to pay for the trip ourselves. Our doctor is in the process of setting up our appt ASAP, so as soon as we have a time scheduled, we will make arrangements to go. We will appeal the coverage issues with our insurance later. Please pray that if this trip would furnish us with information to help cure Andrew, that we be able to go without a problem.
On a side note, I am part of an online cancer support group, for parents of children with leukemia. It has been a great source of information, and as you can imagine, I have built valuable friendships with other moms going down this same path. As one mother put it, we are all in our own little boats out at sea, caught in the same hurricane. When one of us capsizes, it is painful for all of us. Recently, we have had several kids in our group relapse. One little cutie, who by the way has standard risk leukemia (Andrew's is high risk)....this little girl has relapsed only 4 months into treatment. Her name is Julianna, and her family would appreciate your prayers... her website is www.caringbridge.org/canada/julianna and you can see by her pictures that she is a real doll. There are so many others to pray for...including Marcus who just relapsed after a bone marrow transplant www.caringbridge.org/mn/markie
The truth is, while there have been amazing advances in the treatment of leukemia, there are still a lot of kids losing the battle.
Please pray for a cure!
love,
Kim
Saturday, January 3, 2004 3:19 PM CST THE FLU STRIKES
Despite our diligent efforts to limit the kids exposure to the flu....Christine has come down with it.
We went to get her out of her bed this morning, and the entire bed, animals and Christine were COVERED in vomit! She was awake, no crying, just sitting there like her own sweet self! Such a cutie!
We cleaned her up and have been monitoring her temperature....sort of hoping she ate something that didnt sit well, rather than catching the flu. But now, her temp is starting to rise, 100.1. UGGGGH!
Let me back track a bit.....My kids are not allowed to be in indoor areas or be around anyone that *may* be sick. They did not see family for Christmas, for fear that someone might have something.....they dont play with friends.....they just pretty much stay at home and we all go crazy together.
So, how could Christine have caught the flu???
My theory.....Wed., 12/31 I took Andrew for his chemo at the hospital. When we arrived, we entered a crowded lobby...filled with lots of kids. The admiting clerk alerted us to a new policy, "only parents allowed up on the floors"....so, what about Christine??
She was not allowed to go up! Now, I appreciate that extended family members are not allowed on the floor, as many times at the hospital there are more kids in the cancer playroom than at a gymboree.....which I think is DANGEROUS!! So, Im glad they have put an end to it.....but I wish we knew in advance.
So Christine hung out in the crowded lobby for a while.....
Fast forward a couple of days, and wala....she has the flu!!
So, now what??
We cant risk Andrew being around Christine...he has spent the entire morning bringing her stuffed animals and building her lego towers to "make her feel better"...he is such a loving big brother! But we cant risk having him around her.
Thankfully, Grandma Janice has kept herself germ free, and so we have decided that Andrew should go and stay with her for the weekend. Doug and I dont know if we are incubating anything now, and we cant take the chance of Andrew getting sick.
We will care for Andrew's broviac catheter before he leaves today, and do it again when he returns tomorrow (it is done once a day)...and with that taken care of, he should be good to go.
He is excited, as this is his first overnight with Grandma since diagnosis. He used to spend many nights with her on the weekends, and has been anxious go visit her house.
Please pray for our family, that Doug and I stay healthy, that Christine get's over this flu quickly....and for extra protection for Andrew.
We will keep you posted.....
love,
Kim
Wednesday, December 31, 2003 6:57 PM CST Dear Friends and Family,
As 2004 is about to be ushered in.....I have one last update for 2003.
Today we were told that our 2nd opinion at St. Jude was denied, because our insurance "doesnt do out of state" opinions! I pled my case a bit to a gate keeper, and am still pressing on re: this issue.
Doug and I have come to feel most comfortable with NOT doing the radiation, and praying that the chemo prevents any relapse. Andrew is on the strongest chemo regimine for children's leukemia..and we know God can use it to bring him to full healing.
The Dr. at St. Jude does not support radiation, and we still would like to speak with him re: his opinions on the best treatment without radiation.
Please continue to pray about this.
Today Andrew had another spinal chemo. Usually parents are asked to leave the room, as it can be a bit traumatic, however today I was able to stay and watch. His oncologist, Dr. Torno, performed the procedure (usually it is done by Mary, the NP)...I asked if I could stay and watch...and she let me.
Andrew was amazingly brave! Imagine a very thick needle being pushed into your spine.....and liquid (cerebral spinal fluid) trickles out...and fills two vials. Then, chemo is injected to replace the fluid. The entire time you have a VERY thick needle in your back!
He has been vomitting a bit more than usual, and wasnt feeling all that great to begin with today.
He has a fun night planned with his Grandma Janice....so hopefully that will take his mind off any discomforts.
We are so thankful for all of you that take time out to pray for Andrew. Please continue to ask God to heal him, and to find a cure for all of his friends this year!
love,
Kim
Tuesday, December 30, 2003 6:28 PM CST Hi Everyone,
Andrew has been doing fairly well. He had a week off his treatment due to the holidays, and enjoyed the extra time off. His immune system was high enough for some outdoor play...and he went to the park, an outdoor eatery, and rode around in his jeep!
The past couple of days he has been feeling nauseaus (I only know this because he throws up now and again, and walks around heaving if he "smells something"....sort of takes me back to my pregnancies when my acute olfactory senses caused me many sick days.....I digress!)
We are going back to the hospital tomorrow for another spinal and more chemo. Please keep him in your prayers, as it is not a fun procedure.
He is looking forward to coming home tomorrow evening....and ringing in the New Year with Grandma Janice. She has done a great job of keeping herself "germ free" just so she can spend time with Andrew...now that is a loving Grandma!
We wish the best for all of you in the New Year....and appreciate the love and support you have shown us.
love,
Kim
Thursday, December 25, 2003 11:18 PM CST Hi Everyone,
Santa hit our house with a bang! I only asked for a tihar (guitar) and McDonalds Flurry maker, and oh, a doll house for Christine....but you should see what was under my tree when I woke up!
(drum roll.....)
A Fire & Rescue Jeep! It was raining so much outside, so I didnt get to ride it a lot...but mom and dad did take me out for about 15 minutes. It was sooo much fun!
Last night, we made Santa Rice Krispies Treats. We also left him some milk and put out carrots for the reindeer. Santa ate all his food, and the reindeer ate most of their carrots...but they left a mess (carrot bits on the counter!) They must have been in a hurry to get to all my friends' houses.
I really like this whole Santa thing.....I think Santa giving everyone presents is a nice way to remind people that today is Jesus' Birthday.
We sang Happy Birthday to him at dinner,and thanked him for all that He has done for us.
We have been blessed with so many people who pray for us!
I would have new pictures on my sight, but my mom accidentally erased them! There were a couple of me riding my jeep (will get more tomorrow)...and one of me looking like a (rein)deer in the headlights when I came downstairs and saw the Jeep under the tree! (I was so surprised).
Thanks for checking on me....even though I dont get to see my friends much anymore, I still miss you and think about you all a lot!
Love,
Andrew
Monday, December 22, 2003 7:06 PM CST Hi Everyone,
Andrew has been feeling pretty well. The Christmas holiday is giving us a small break from the chemo, as he doesnt have to go back until next week.
Our neighborhood had a beautiful Menorah Lighting celebration on Saturday night.....another outdoor event, so we took advantage of the opportunity. Andrew enjoyed marching around to the songs, and played with a dradle...
Now, Im sure some of you are saying, "Wait, they arent Jewish, are they Jewish? When did Doug and Kim convert to Judaism??"....
We arent Jewish, but as Christians we know that God's miracles of the Old Testament are a beautiful part of our heritage. It was nice to hear the Rabbi speak of the Hope the Jews had, the Faith, and how God provided for them by way of a miracle.
We have a big lit up Menorah in the park near our home, and it is a nice reminder, that our God is in the business of hearing prayers and providing miracles. (Special thanks to our neighbor Robert, who built the Menorah and organized the event.)
I'll point out a funny thing.....while everyone was singing a song, one of the Rabbi's looked at me and said, "What you arent singing, you dont know the words?"...."uh, sorry, Im not Jewish"...I whispered....he looked at me funny and walked away....probably thinking I was some crazy woman that had just showed up for the free latkas and cocoa.
I've posted some new pictures in the "photo album".....would love for you to sign our guestbook too.
lots of love to you all,
Kim
PS. We are still praying, and still awaiting word on a possible trip to Tennessee to get a second opinion at St. Judes. Thanks for your prayers!
Saturday, December 20, 2003 1:11 PM CST Hi Everyone,
We can hardly believe that Christmas is almost here!
Though we have had a tough week, so many of you have supported us and given us lots of reasons to smile.
Last night, we were surprised to hear beautiful voices from outside our home. We opened the door and there were many, many smiling faces singing Christmas Songs. The wonderful Kids Who Care group (one of our clubs here in Ladera) came to bring us Christmas Cheer...and boy were they successful. They are also donating toys to CHOC on Andrew's behalf. It is the many friends and the love they show us that helps us through this journey.
We are still praying through our decision about radiation, and will probably be going to St. Judes in Tennessee the begining of the year. The doctor we will be seeing is a world expert on childhood leukemia (he even won a Nobel Prize!). He is generally against radiation, and we are hoping he can give us some insight into how we can best augment Andrew's treatment, so that he can get the best protection without radiation.
Andrew's blood counts were critically low for two days, but they look fine now. Our doctor actually thinks it was a mistake made by the lab. :0
We are planning on staying home for the holidays.....but I wouldnt be surprised if we ended up taking off for a day or two.
We wish all of you the best Christmas ever! Our greatest gift is that of Christ, and the HOPE He offers for eternal life.
love,
Kim
Friday, December 19, 2003 0:22 AM CST Just a new update.........
I received a message from our oncologist, saying that she thinks I should fly to St. Judes (Tenn.) for a second opinion from a well respected oncologist. The oncologist has already given us feedback in writing, and Im not exactly sure what going in person would entail.
But Doug and I know that we have asked for guidance, and if this is the path that will make our decision clear, then it is what we want to happen.
Please pray that God continues to make our path straight and clear. If this trip will only add confusion, I dont want to go......if it is what we need to have God's will obvious, then please pray it will happen.
Also, please continue to pray for our oncologist, Dr. Torno, and that of the oncologist at St. Judes, Dr. Pui, that God would give them His Wisdom in healing Andrew completely.
Love,
Kim
Thursday, December 18, 2003 8:11 PM CST Hi Everyone,
I hope you are all enjoying the hustle and bustle of the Season while stearing clear of the nasty flu!
We are all pretty healthy here....one good thing about hibernating is that we are keeping away from the flu.
Andrew looks great, his coloring is better than I have seen it since he was diagnosed. We did his blood counts today, and I was surprised that his albumin (protein), potassium and calcium are very low. (especially since he ate a few bananas yesterday and drinks milk like a cow!). So the doctor has instructed us to fuel up on those nutrients (we may head over to Jamba Juice and see if we can make a "special dessert"). And.....we will have chicken tacos and bananas for dinner.....that should help!
We will recheck his counts tomorrow....and hope he doesnt end up going to the hospital to have any thing transfused.
Thanks all of you for keeping us in your prayers. We feel the love and support and it is sustaining us through this difficult time.
love,
The Spragues
Monday, December 15, 2003 7:52 PM CST Dear Friends.......
Well, the surprises never cease, and Santa seems to be EVERYWHERE!
Guess where the Jolly Fellow showed up today? At the Cancer Clinic!! He and Mrs. Claus were there with so many presents. I sat on his lap and kissed his nose (my mom says that is a lucky place). My sister cried, all his white hair and fur seemed to scare her!
Anyhow, we had a nice time, and I got a Power Ranger and a candy cane. I also got some chemo, but not from Santa.
Ill be going back again tomorrow, and I have a funny feeling he might be there again! He must really love me!
Thanks for checking on me,
Love,
Andrew
Saturday, December 13, 2003 0:44 AM CST Hi Everyone,
I had a fun night tonight! Our community had a Christmas Tree Lighting extravaganza, and I was able to go. Since it was outside, my mom figured there would be lots of fresh air (and since it was cold out, she was counting on the people with the flu to stay home.)
I ran around the grass with some neighbor friends, and waited for the big moment..........
Santa arrived ON A FIRE ENGINE! He said, "hi" and waved to me....he of course knows me and remembers that I want a "ti-har" (guitar) and an "old McDonalds" (McDonalds) Ice Cream maker, and a "little people's" doll house for Christine.
So, I waved back to him......and then.....He said some magic words, and the big Christmas Tree lit up!
It was really fun, and I told my mom and dad that I want to go back and do that again!
I go back for Chemo on Monday and Tuesday......Im feeling ok right now, throwing up about once a day, but otherwise doing fine.
Thanks for checking on me, and for your prayers to make me better.....dont forget to sign my guestbook!
Love,
Andrew
Monday, December 8, 2003 5:34 PM CST Dear Friends and Family,
We hope you are enjoying the Christmas Holiday Season. Andrew has been running around feeling ok. He has some occasional vomitting and tummy aches, but otherwise is holding up well.
We had a lot of surprises this weekend. First, CHOCO the Bear (the CHOC Hospital Mascot) paid Andrew an unexpected visit! (OK, really it was me, mom, in the costume......but Andrew doesnt know that. We had borrowed the costume for a Children's Hospital fundraiser that we were having that weekend, and since Andrew couldnt go and wouldnt be able to see CHOCO - whom he loves- I thought I would surprise him at home.) He now loves to tell people about CHOCO...and a (supposed) conversation that they had....About how CHOCO has leukemia and how he got blood work (this must have all been Andrew's imagination, since I could not talk in that costume!).
We also had a special gift left on our porch MYSTERIOUSLY! It contained the famed "Partridge in a Pear Tree" ....A beautiful Pear ornament, and a "Partridge Family Bus" ornament....yes, the Partiridge Family Bus is that multicolored bus and when you push a button it sings the theme song from the show. Andrew LOVES this, and has been carrying it around playing the song continuously.....he now knows all the words.....Come on Get Happy! Thanks to the secret elf that left such a special treat!
The Last surprise, was a surprise birthday dinner for daddy. Mom had gathered some of dad's friends at one of his favorite restaurants....When we showed up, dad was surprised to see the friendly crowd. Unfortunately, mom became very ill (headache and vomitting) and had to go to the ER. During my night of misery, I thought of how often Andrew has to deal with nausea, vomitting and feeling icky, and felt so much empathy for all that he is going through.
We hope you all have a great week!
Love,
The Spragues
Friday, December 5, 2003 0:57 AM CST Hello Everyone,
We are home from a long day at the hospital. Andrew received 3 chemos, 2 in his catheter and 1 spinal. He is doing well with no vomitting (knock on wood!) He also received transfusions of protein and whole blood.
THANK YOU DONOR # C19730A
They dont tell us the name of the donor, for confidentiality reasons, but I did note the donor number. We said prayers for you, donor C19730A , many times during Andrew's transfusion. We are very grateful that you give blood, and particularly that you go out of your way to direct it to Andrew's account!
Andrew is currently snuggled up with his dad, sharing a bag of pretzels. Time for me to break up the party, very late here.
Thanks for your continued love and support,
The Spragues
Wednesday, December 3, 2003 4:38 PM CST Dear Friends and Family,
We just returned from a visit with the doctor at the clinic. Andrew's red blood and protein levels were low, so he will have both of them transfused tomorrow, when we go in for chemo.
We also continue to discuss changes in his treatment plan.
Andrew is on the strongest possible chemotherapy protocol, but his type of leukemia still has a high incidence of relapse. We are looking at things that may help increase his prognosis.
Most children with Andrew's type of leukemia receive cranial radiation. They do not give it to children who are 2 and under at diagnosis, so this was not offered for Andrew.
We are concerned that he is not getting it, but on the other hand strongly dont want him to receive it. There are many serious side effects such as; growth problems, future incidence of brain tumors, loss of IQ, learning disabilities, behavior problems and more.
We have done some research and will be adding additional spinal chemo and high dose chemo to Andrew's already tough protocol. We are hoping that it will give us extra protection against relapse. We still however are uncertain about whether to add the cranial radiation. (If we do add the radiation, we will not do the additional high dose chemo).
We would appreciate all of your prayers, asking God to give us and the doctors wisdom re: Andrew's treatment plan.
love,
The Spragues
Wednesday, December 3, 2003 0:03 AM CST Hi Everyone,
I hope you are all full swing into the Christmas Spirit...we pulled out the Christmas decorations (it looks like the seasonal aisle from Walmart got dumped into our living room), and have had fun giving the house a festive look.
Andrew is VERY excited...he knows Santa (personally!), has his wish list items all picked out (and Santa knows what they are, and Andrew knows that Santa knows.....)......
He understands that it is "Jesus's Birthday Party" and so everyone (including Santa) is getting ready for the big celebration.
Andrew is scheduled to have another round of chemo on Thursday. He has been complaining a lot of headaches and stomach aches, and is extremely irritable. His oncologist had me do more blood tests tonight (we will have the results in the morning) and she also wanted us to come in tomorrow (Wednesday) to double check some things. So we will be going to CHOC Wed and Thursday of this week.
We appreciate you keeping Andrew in your prayers....he has a long road ahead of him and will need the support of his friends and family. We have met several other cancer kids who have relapsed lately, many of them with "standard" leukemia. So considering Andrew's is high risk and t-cell, and more prone to relapse, we are in need of constant prayer.
Love,
The Spragues
Thursday, November 27, 2003 1:37 PM CST Hello Everyone,
We returned this evening from a mini-vacation, travelling up the California coastline. We ended up spending Thursday and Friday Nights in Solvang, a Danish village just NE of Santa Barbara. It was very pretty, all decorated for Christmas.
The kids did very well, and Doug and I have vowed to take as many mini-get aways as we can, now that we know they travel so well.
Andrew had some bouts of nausea/vomitting and has complained that his feet hurt (no doubt from the chemo "vincristine"), but he was in very good spirits the entire time.
We stopped at various beaches and saw lots of dolphins and sea lions. We also saw some blue jays while in Solvang ..this was fun for Andrew, as there is a singing Blue Jay in his favorite Barney Video...:)
We hope you all enjoyed your Thanksgiving, we are certainly thankful for all of the prayers you have said on behalf of Andrew and our family!
Love,
The Spragues
Monday, November 24, 2003 10:46 PM CST Dear Friends and Family,
Thank you for checking on Andrew. He had a pretty good day at the hospital. They did his spinal chemo, as well as two chemos in his direct line (catheter to his heart). They decided to hold off on the peg (a shot in his leg) due to toxicity, so we are going in tomorrow to receive it.
He has had some tummy aches and vomitting, please pray that this subsides and his appetite picks up.
Andrew and Christine went and saw Santa today!! I arranged with the mall to allow us to come before they opened (so that Andrew would not be 'exposed' to anything)....and they were very gracious and thrilled to do this for Andrew. So we got all dressed up and went down for our visit early this morning.
Andrew was eager to sit on Santa's lap. He unfortunately is not smiling in his picture, but he did enjoy telling Santa what he wanted (a "ti har"...also known by most of us as a guitar, and a snow cone machine)...and what Christine wanted (a Little People doll house like they have in the hospital playroom)...he also let Santa know that he would share his toys with Chrisine..and she would share with him (I guess this is his way to make sure he gets to play with the Little People doll house, although he is very good at sharing.)
When we were leaving, Santa came over and told Andrew if he is ever at the mall, to stop by and say "hi"..."and you dont have to wait in line Andrew, you just come right up to the front to see me!"...a very nice Santa!
So as of this writing, Andrew has asked me 167 times, "Is Santa coming to our house this night?" ..and we have a month to go!!
Have a great week and thank you for keeping us in your prayers!
Love,
The Spragues
Friday, November 21, 2003 7:16 PM CST Dear Friends and Family,
We just received Andrew's lab results back, and they are looking much better. We are particularly happy to see his albumin (protein) level up, as low levels can effect the liver.
He will begin chemo on Monday. This will be an 8 week phase, which includes the following drugs:
Peg asparagenease- this is a big culprit in the low albumin counts, please pray that Andrew's liver is protected
Intrathecal (spinal) methotrexate- please pray that Andrew's brain and spine are protected, there can be damaging side effects with this medication. Also, pray that it does it's job at helping to prevent a relapse.
IV methotrexate-methotrexate (IV and IT) is known to cause severe sores in the mucous membranes..including the mouth. It can be severe enough to keep kids from eating, requiring IV nutrition. Especially since Andrew is going to be getting such high doses, please pray that his mouth is protected.
Vincristine-this is the drug that causes Andrew's jaw to hurt so badly that he wont eat...it also causes his feet to hurt so he cant walk. The last phase with vincristine also had Andrew complaining of stomach pains around the clock. Please pray that he would not experience these pains during this next phase.
We appreciate all of the prayers and support that you have all shown us.
The Spragues
Tuesday, November 18, 2003 11:18 PM CST Dear Everyone,
Andrew returned home from the hospital this evening. He feels pretty good.
He did not receive his chemo today, as his counts were still low. We are waiting for his immune level to recover, and there is also concern that his protein levels are still low. We are hoping that these will rise by the end of the week. I will do a blood test on Friday, and if things look good, he will start "phase 3" on Monday.
Thank you for your prayers!
The Spragues
Monday, November 17, 2003 7:34 PM CST Dear Family and Friends,
Thank you for your continued prayers.
Andrew is still in the hospital, and he is getting IV antibiotics. He is also getting IV protein again, as it had dropped dangerously low.
He is scheduled for chemo tomorrow, if his counts have recovered enough, and if his fever stays down. We are hoping that he can receive it and return home shortly thereafter. It will all depend on his blood tests tomorrow.
He is starting a new phase of his treatment, and he will need a lot of prayers. Despite Andrew being on the strongest treatment plan offered, they have increased the doses of spinal medication to be given during this next phase. This was done to help ensure that he does not relapse in his spinal fluid (the most common form of relapse).
The medication causes a lot of serious side effects, and can be highly toxic. The way it is given, is in escalating doses to toxicity. That means that each time he gets it, they will give him a higher dose, until his side effects and blood tests indicate that his body can not handle any more. This can be very scary. The treatment plans for childhood leukemia are still being researched and changed....they are constantly trying to improve survival rates while reducing toxicity. The truth is, some children die due to the chemo itself. It is a fine line between killing off enough of the bad cells without killing too many of the good ones. Please pray for Andrew as he goes through this next, very toxic phase, which will last 8 weeks (although may have delays due to toxicity.)
God bless you,
The Spragues
Sunday, November 16, 2003 2:58 PM CST Thanks for checking on Andrew.........
He is running a fever, and he needs to be admitted to the hospital.
I'll write more later.
We appreciate your prayers!
love,
Kim
Saturday, November 15, 2003 1:14 AM CST We had another crazy day...however it was baby Christine that kept us busy with doctors.
While sitting in the family room with her on the carpet, I noticed she had gotten ahold of something small and white, and had put it in her mouth. Upon further investigation, I concluded it was one of Andrew's chemo pills (purinethol/6mp).
Andrew used to scream and spit out his meds...that was before he was 3 (now he takes them like a big boy, so brave!) Im guessing that is how this pill (or part of one) got under the couch.
I was able to get about 1/4 of the pill (in little pieces....and I tasted it, that is how I know it was 6mp). I do not know if Christine ingested the other 3/4, or if she had only found the 1/4 pill.
In any event, a call to the oncologist was made, and we were told we had to go to the ER, no matter how small of an amount she took.............UGH!!!
Long story short, we spent the next 4 hours at the hospital.....while nurses, ER doctors, our ONCS and Poison Control went back and forth over what to do. Everyone decided that Poison Control should make the decision, however, Poison Controls decision was to stay the night and monitor Christine.
That just seemed crazy to the rest of us! The effect of the medication (if any) will be a lowering of her blood counts and nutrients (which is what it is designed to do). So we opted for a blood test, and we will do more in the coming days.
Poor little thing also had to drink a lot of black charcoal! (I almost forgot that part!!)...She was such a trooper......and by the time we were done, she looked like she had stuck her head in a can of black paint!
They also did some blood tests........again, very brave, didnt even cry (didnt even blink!) when they drew her blood.
I came home and told Andrew how brave she was, and he said he was "so proud of her".
We are all now back at home.......going to bed......and praying for a peaceful weekend.
Kim
Tuesday, November 11, 2003 0:38 AM CST Dear Family and Friends,
Andrew returned home from the hospital early Monday night. He is feeling much better, with his typical bounding energy.
After his blood transfusion in the hospital, his blood tests showed that some nutrients were not improving and had reached critical levels, so he received transfusions of nutrients.
He is supposed to start a new phase of chemo next Tuesday, but it can only start if his counts return to a certain level. The doctor doesnt think they will return to that level by next week, thus possibly postponing his next phase.
It is important, especially at this early time, that he does not have gaps between treatment. Please pray that his levels begin to recover on their own, so he can proceed with treatment as planned.
We are grateful for the messages of love and prayers,
The Spragues
Sunday, November 9, 2003 10:53 PM CST Dear Friends and Family,
I am writing this from the hospital, as we had to bring Andrew in this morning. He was continuing to throw up and was very lethargic.
Since we have been here, he has slept a great deal, but thankfully has not had any more vomitting. A review of the cat scan showed there were no bleeds, and we are very thankful!
He had become dehydrated, so is getting a lot of fluids. His blood levels also dropped, so he is getting a transfusion of whole blood.
Because his immune system is so low, they want to make sure he doesnt have any sort of bug. They took some cultures and ran some blood tests.
We are hoping that he is on the road to recovery, and that we will soon be on the road home :)
Thanks for your prayers,
The Spragues
Sunday, November 9, 2003 1:33 AM CST Dear Friends and Family,
Long story short, Andrew hit his head while climbing in the house today (even his oncologists are amazed at how energetic he is...and while on all this chemo!)
He began vomitting, and we took him to the ER.
We always have to drive up to the ER at St. Josephs in Orange, since he is treated at CHOC in Orange. Also, it is scary to take him to the ER because his immune level is almost at 0..and he can get exposed to so much in that place. They make him wear a mask, and wisk us back to our own room...but still makes me nervous.
He continued to vomit about every 20 minutes...and is still vomiting as I write this. They gave him a strong anti-emetic in the ER, but it hasnt helped much.
The CAT scan looked fine....for which we are thankful.
Please pray that his vomiting subsides. Im not sure if it is due to all of the chemo from the last 3 months finally catching up with him or if something else is going on. He was not vomitting anywhere near this much until he fell and hit his head.
His blood counts are similar to the other day, some have gone up a tad, some have gone down a tad.
We are home now, and hopefully all will be back to "normal" in the morning...praying that we all get some rest tonight.
The Spragues
PS. While at the hospital, we saw all the news cameras our front, preparing to cover a story on the little girl who drowned. She was pronounced dead, and some time later was found to be alive! What a miracle!!
Friday, November 7, 2003 6:00 PM CST Dear Family and Friends,
Andrew has been feeling pretty good with a lot of energy and smiles. He is still having some stomach aches and vomitting, but much less than expected.
We did his labs today, and his blood counts are low, but not low enough for a transfusion. His immune level has dropped down to almost nothing, so he wont be able to go out this weekend. As much as we dont like his counts to be low, the chemo is doing what it is supposed to do. The purpose is to knock down his system, so that the cancer does not have the ability to come back.
Please pray that he does not get sick while neutropenic (no immune system), and that his stomach aches will decrease.
He has also lost some weight, so please pray that he regains a healthy appetite.
We are grateful for your prayers!
The Spragues
Tuesday, November 4, 2003 3:47 PM CST Dear Friends and Family,
We returned from the clinic today, and Andrew is feeling pretty good. His immune level is still low, as is his protein level. His red blood level and platelletes are low, but not low enough to warrant a transfusion. I will do another blood test on Friday, to see if his counts are recovering.
He recieved his last dose of chemo for this phase (consolidation), and will start his next phase in two weeks (if his immune level is high enough.) We are hoping that his immune level recovers quickly, as that may give him some time to play with friends before starting the next phase.
Our doctor is going to a conference, and she has promised that she will attend sessions on t-cell leukemia, the type that Andrew has. We are actually holding off on our final decisions about his treatment, depending on what she learns at the conference. She is a wonderful Christian, and she is praying that God uses the conference to fill her with His wisdom. Please pray for her, that God would speak to her, and that new insight might be gained re: Andrew's treatment plan.
Thank you for all of your prayers,
The Spragues
Saturday, November 1, 2003 11:58 PM CST Dear Family and Friends,
Andrew received whole blood and platelettes on Thursday. We went in the afternoon, and stayed until very late at night. His platelettes had dropped down to 3 (3,000) which is critically low.
The platelette transfusion was from the general donor pool, and his red blood donation was from a direct donor!! Thank you so much!! I dont know who you are, but I know that you donated on October 7th...we appreciate you taking the time to help keep Andrew healthy. (I also appreciate the platelette donor's selfless act too.)
We will be taking another blood test on Monday, please pray that his counts are high enough not to need more transfusions.
Andrew has been full of energy despite the harsh medications. However, he is having some stomach aches, as well as nightmares....please pray that these subside.
A side note, for those of you that are out of state and are wondering about the fires in California......
We were not near any fires, they were an hour or more to our north and to our south. We did have a lot of smoke and ashes everywhere, but were never in danger. We have had rain the past couple of days and the temperatures are much cooler (in the 60's), this has helped dampen some of the fires a bit.
Thanks again for your continued prayers,
The Spragues
Thursday, October 30, 2003 3:33 PM CST Dear Friends and Family,
Andrew's blood levels have become extremely low, and he is going in this afternoon for transfusions of whole blood and platelettes. Please keep him in your prayers.
He seems to be feeling ok, all things considered.
We appreciate your continued love and support,
The Spragues
Sunday, October 26, 2003 1:12 AM CDT Dear Family and Friends,
Our little guy is now 3....he celebrated throughout the week, and had such a great time.
His blood tests from Friday show that the chemo is really hitting him hard and taking a toll. His immune system is almost completely gone. He had a blood transfusion this week, and may need more in the near future.
Thank you for keeping him in your prayers, he has very few symptoms and feels relatively good considering what his body is going through. We know this is because so many are lifting him up to God for protection.
love,
The Spragues
Monday, October 20, 2003 8:16 PM CDT Dear Friends and Family,
Andrew had a fun birthday weekend and he even made it over to Disneyland to see his favorite, the Electrical Parade!
He is holding up pretty well, however the chemo has been wiping out his system, and his blood counts are low. After taking his blood test today, we were told he needs to come in for a transfusion.
**A special thanks to all of you blood donors..this is why we need you!!**
He also will get chemo 4 days this week.
Please continue to keep him in your prayers. We are only just beginning 3 years of chemo, and the doctors say that the effects will be cumulative...meaning it will wear him down more and more as time goes on.
Thanks for all of your love and prayers!
The Spragues
Thursday, October 16, 2003 7:09 PM CDT Hi Everyone,
Thank you for taking time to check on Andrew and visit his page. We appreciate the prayers that people are saying on his behalf.
He is doing pretty well, considering the meds he is on this month. He has been vomitting off and on throughout the day, for the past few days, but otherwise is ok.
We expect his symptoms to increase, while his immune system drops, over the next couple of weeks. But who knows, he has proven to be quite resilient thus far.
Andrew's leukemia is t-cell, which has a high rate of relapse, and is less favorable than the more common b-cell type. Because of this, we are looking at ways to increase his prognosis.
We have been discussing treatment options with his doctors, and they (and we) are continuing to research what would be best for him. Many of the chemo's are new (or the combinations of them are new) and there is not a lot of data to tell us which way to go.
Andrew's doctor, Lilibeth Torno, told us she will continue to pray about this, and ask God for guidance. We are praying to, as we want to make sure Andrew get's the treatment he needs, while avoiding damaging side effects.
We are thankful that we have so many of you praying for Andrew, and ask that you would specifically ask God to show his doctors and us what path to take in his treatment. And for God to continue to keep His hand of healing on Andrew.
love,
The Spragues
Sunday, October 12, 2003 11:32 PM CDT Hi Everyone!
Andrew had a great week, and he was able to spend time with many of you, his family and friends. He enjoyed going to the mall with friends Tanner and Ryan, going to the new Fire Dept. open house, celebrating at Natalie's cowboy party, going to IHOP with grandma, visting his friends at grandma's work, playing with his friend Sasha at the toy store, seeing his friends at church during Christine's Dedication, and walking with friends Morgan, Korinne, Sasha, Ellie, Nico and Elizabeth around the bay. What a fun week!!
Tonight he strolled around Newport Bay in our Light the Night Walk to benefit the Lymphoma & Leukemia Society. It was a really beautiful night.
Please pray for Andrew's doctors, and his parents, as we have some treatment option decisions to make. There is really no easy treatment for leukemia, but we want to make sure he gets the best medicine with the least amount of side effects.
Andrew has some tough chemo this week, please pray that God continues to protect him.
Love,
The Sprague Family
Thursday, October 9, 2003 2:47 AM CDT Dear Friends,
Andrew's blood counts (his immune system level) is doing well, and we are going to let him out and about this week to do some normal things.
Today, he went to the open house of our neighborhood fire station, and played with some friends.
Please pray that he remains safe during this time.
He has had increased nausea and vomitting the past couple of days, please pray that it goes away.
When Andrew doesnt feel well, he becomes very angry and upset. Please pray that his moods will be less affected. Many kids on chemo have severe mood swings, anxiety and rage, and a lot of them take psychotropic medications. We would prefer not go that route (at least not yet) so please pray that this does not continue.
We appreciate your prayers!!
The Spragues
Monday, October 6, 2003 9:48 PM CDT Dear Friends of Andrew,
He has been feeling relatively well, in spite of lots of yucky chemo! Thanks for your prayers, love and support.
Yesterday, Doug, Kim & Christine went to the CHOC Walk, a fundraiser for Children's Hospital. The Walk took place through Disneyland, early in the morning, before the park opened. Lots of characters were out and about. We cant wait for next year's walk, as we know Andrew would like to see his friends like Tigger and Rollie Pollie Ollie (who I guess is now a Disney character). Andrew (with the help of friends like you) raised a lot of money, and we think he may have raised the 2nd highest amount...which would entitle him to getting a brick placed in front of CHOC. We are very excited about this!
Andrew will go back to the hospital tomorrow for another spinal and other chemo. Please continue to pray for him.
Next weekend, we will be participating in the Leukemia and Lymphoma Society's Light the Night Walk. It will go through Newport Dunes in the evening (I bet it will be beautiful). We will remember our family and friends that have passed due to these cancers, as well as those that are surviving (Yeah Jeni!).
These walks give us a positive way of helping to fight this dreadful disease.....and I thank you for supporting and praying for us during this time.
The Spragues
Thursday, October 2, 2003 1:23 AM CDT Dear Friends and Family,
Andrew is doing so well! He has been taking very strong stuff these past weeks, and is holding up like such a trooper.
The doctors are amazed at his energy, and I am thankful that he has not been in too much pain or too sick.
Please continue to pray for protection, for both the short term and long term side effects of these medications.
Also, please pray for Doug and I as we learn more about Leukemia, about possible tests and treatments...and that God would guide us to the very best care for Andrew.
Please continue to pray for his primary oncologist, Lilibeth Torno, and the entire team of doctors....that they would have the wisdom to catch any problems early on, and to give Andrew exactly what he needs to beat this disease.
Thanks for your continued love and prayers!
Kim and Doug
Saturday, September 27, 2003 0:14 AM CDT Dear Friends and Family,
Thank you for your prayers, as we believe they are giving Andrew strength and protection, as well as bringing about healing!
Despite being in a really difficult phase of treatment, he still has energy and a sense of humor.
He has learned a lot recently, like how to take his medications...and without water!! He grabs his tablets and pops them in his mouth...and they are gone. This is the boy that was vomiting as soon as medicine touched his lips...
He has a new Peanuts video, about a girl named 'Janice' (sorry grandma) that gets Leukemia. Andrew knows that he has cancer or leukemia, just like Janice. He has tubies (his IV Catheter) where they put his chemotherapy. He knows it is helpling Jesus make his blood clean. He knows all about "blood work" and "cleaning his patch" (changing the dressing on his catheter, which is very painful and he hates it.) He knows he gets "stickers on his bottom" (refering to the bandaid on his back after the spinal tap),....he can tell you all about any of this, and yet he seems to be hanging in there like such a big boy!
We are praying that all of this knowledge will be used for good one day, as we cant think of any other reason why a 2 year old should have to know all of this.
Andrew's immune system has dropped a lot this week, so please pray that as it continues to drop, that he remains free from fevers and nausea.
Thanks,
The Spragues
Monday, September 22, 2003 8:29 PM CDT Dear Family and Friends,
Andrew's surgery went fine, he now has a new catheter, located on the other side of his chest. (the last two had been done on the left side, in the same place, so they decided to redo it altogether.) There is always a risk that a lung can get punctured during the surgery, but the x-rays are showing that it was a complete success, yeah!! Thank you for your prayers!
He is currently getting some new blood, (thanks to all of you donors!) as his counts were low.
All things considered, he is in a good mood with some energy to spare!
We will be staying overnight, as he is scheduled to get IV and spinal chemo tomorrow. With his counts getting low, and a full week of chemo ahead, we are getting into that state where he is very susceptible to infections. Please pray that God keeps him safe and protected, no fevers or illnesses.
We appreciate your prayers and your love!
God bless you,
The Spragues
Sunday, September 21, 2003 11:14 PM CDT Dear Family and Friends,
Andrew will be having a new broviac catheter put in tomorrow morning. Please pray that the surgery goes well, without complication, and that the new catheter works properly.
We will be staying overnight in the hospital, returning home sometime on Tuesday after his chemo.
He then will return for chemo on Wed., Thurs., and Fri. Please pray that the week goes smoothly with minimal effects.
For those contributing to the CHOC Walk, thank you for supporting such an important cause. As many of you know, although we have a CHOC down the street, Andrew receives treatment at CHOC in Orange. Most of the pediatric specialty groups are only in Orange. We think it would be wonderful if the resources were available to have more specialists at the CHOC in Mission (near our home), so that families could be closer to their children receiving treatment.
If you would like to donate, the deadline is September 25th. Go to www.chocwalk.org. click on "register online" and then click on "sponsor a walker". Christine will be walking (strollering) in celebration of her brother's 3rd birthday, her "walker id" is dougsprague@cox.net.
Thanks for all you are doing to support and care for us!
The Spragues
Thursday, September 18, 2003 4:27 PM CDT Dear Friends and Family,
We had a long day at the clinic, as they had difficulty with Andrew's line (his Broviac catheter.) They are going to redo the surgery (this will be the 3rd time) on Monday.
Please pray that this all goes well, and that the line will work properly. Poor Andrew was still feeling the pain from the first 2 surgeries up until about a week ago, I hate to see him have to go through this all again.
For those interested, the catheter is a line (like an IV) that is inserted through the jugular vein, through the heart, and out his chest. He has 2 IV lines hanging out his chest. It allows them to do all of his blood draws and administer his medications directly into the lines, without having to stick his skin with needles each time. This is a great thing, but we do have to be careful with it, as it can get infected easily, which since it goes right to the heart, can be very dangerous.
Otherwise, he is doing ok, a little tummy aches, some nausea, and the location of his last spinal is still sore, but he has a decent energy level :)
He has finished his heavy steroid phase, and we should see his moods improve and his hunger decrease......although he still asks for Burger King and chips several times a day!
We appreciate your support, and will keep you posted.
Love,
The Spragues
Wednesday, September 17, 2003 4:36 PM CDT Thank you for all of your prayers!
Andrew feels a lot better than he did on Monday & Tuesday.
We also had our first ever, successful downing of oral medication! Andrew is capable of swallowing an m&m, without water! However, when it comes to his pills, he throws a huge fit.
I covered one of his pills in chocolate....Andrew helped me melt the chocolate, he thinks we were making brown m&ms. (he of course never saw me put a pill on the chocolate and cover it with more chocolate.) After it cooled, Andrew ate it. Unfortunately, he bit into it, and then made an awful face, but by that point, the medicine was down.
He still doesnt realize that medicine was in the "m&m", and we will try it again tonight. Let's pray this works, it would sure be a big victory in our battle with the medication.
Please pray that Andrew's broviac catheter (his main line VAD) is ok. It has had problems with infection, and more recently it appeared that the "cuff" (which is supposed to be well within the chest) was coming out of the body. I waited all day to see the surgeon, but didnt get to talk to him. He showed up when I was on one of my many trips down to the cafeteria to get Andrew "orange chex mix". The surgeon told the nurse, "It will last at least another week, so I'll look at it again on Monday." I didnt get any other details, but that catheter is supposed to last a few years! We really do not want him to have to go through another surgery, so please pray that the misplacement of the cuff can be fixed in a non-surgical manner.
Thank you for keeping Andrew and our family in your prayers!
love,
The Spragues
Tuesday, September 16, 2003 10:48 AM CDT Dear Family and Friends,
Andrew began his new phase of treatment yesterday, and we are off to a rough start.
We went to the hospital at 10am and did not return until 5:30am this morning. Despite having been given the maximum amount of anti-emetic medication, he has been vomitting about every 30 minutes. He also got a rash from the medications.
Please pray that this nausea passes quickly and that he can get some rest.
The medication that makes him sick will be given 4x a week, along with other harsh meds, so please pray that he doesnt suffer too much.
Thanks for your continued love and prayers,
The Spragues
Friday, September 12, 2003 10:12 PM CDT Dear Friends,
Andrew has had much less pain this week, and we are so thankful for all of you that are praying for him.
His blood counts today were great, so he will get to go out and play in open spaces again this weekend!!
Andrew told me today that he drank water and it made his blood clean! Doug and I often remind him to drink lots of water (as well as take his meds) to help make his blood clean. So, I thought nothing of his claim, until Doug pointed out that Andrew drank a bottle of Holy Water (That ought to do it!)
Many of you have asked about Andrew's medication schedule. He is on a protocol named CCG 1961 D (augmented SER, without cranial radiation.) I will put down the chemotherapies he gets for the next 9 weeks:
* Tapering off of his steroid, Prednisone
* Cytoxin; an IV once a month
* ARA-C; an IV given 4 days a week
* Mercaptopurine: a tablet taken each day
* Vincristine; an IV given at the end of weeks 2, 3, 6 & 7
* PEG; two shots in the leg given once a month
* Methatrexate; given intrathecally (via spinal) in first and second week.
We appreciate all of you prayers, and are thankful that God is using this regimine of medication to heal Andrew completely!
love,
The Spragues
Tuesday, September 9, 2003 10:50 PM CDT Hi Everyone!!
Great news, as Andrew's marrow is still "blast" free. His spinal fluid is also free from any cancerous cells. This is wonderful and we know that it is because so many pray for him throughout the day, EVERYDAY!! THANKS!
He also seems to be feeling a little better today. We are in-between treatment phases. In the last phase, he received a particular chemotherapy (Vincristine) that caused a lot of the pain he was going through. He didnt receive it yesterday (since we are moving on to a different phase)..and it really shows...he is in a better mood and not complaining about his tummy constantly.
Im enjoying this reprieve, because the next 60 days (starting Monday) will actually be more intense than the last month. Please keep him in your prayers, as his body gets pumped up with all of these toxic chemicals. The side effects can be very serious, and we are praying that God protects him from any long term problems.
May God bless all of you for keeping Andrew in your hearts!
The Spragues
Tuesday, September 9, 2003 0:50 AM CDT Andrew received his last dose of chemo from the "induction" phase. It was administered via spinal tap, and he is in a bit of pain from it. The good news, is that there is still no sign of the cancer spreading to his CNS (which is often how it relapses). He also received a bone marrow test (and we hope to have the results tomorrow).
Next week, we begin the consolidation phase, which involves chemo 4 times a week. This will last 9 weeks. Please pray for scheduling issues. I will be calling the doctor tomorrow to see if we can adjust our start day to make child care for Christine easier.
The doctor did refer Andrew to a PT for an assessment, as the pain in his feet has increased, and he is unable to do things that were simple for him a month ago.
Thanks for all of your thoughtful words and especially your prayers!
The Spragues
Friday, September 5, 2003 7:44 PM CDT Dear Friends and Family,
Your prayers for a "pain free" day were answered (sort of) in that Andrew's procedures were postponed.
After arriving at the hospital, where they quickly fed him lunch, they came and told us he was not allowed to eat the 4 hours before the procedure! He had already eaten a piece of Grandma Janice's ice cream birthday cake, 3 bags of chips, and 10 chicken nuggets....plus the lunch they served him.
We will go back on Monday to have the procedures done.
They did do a blood count, checked on some things, including his infected catheter.......and we should have some of those results back this evening.
If his numbers are high enough, he can venture out again this weekend, which I know he will enjoy.
Thanks to all of you for praying for him today!! We know that it makes a big difference. Your messages in our guest book always make us smile :)
love,
Kim and Doug
Wednesday, September 3, 2003 6:13 PM CDT Dear Friends and Family,
Thanks to all of you for continuing to pray for us. We also appreciate those of you that have taken time to watch Christine, provide us meals, clean our house, donate blood, send Andrew goodies and cards, and even Andrew's Secret Admirer who replanted Andrew's Garden!! You are, to us, being used by God to show his perfect love.
Andrew has had a rough week, as he is in a lot of pain. It has primarily been his stomach, but he also complains about his jaw, his head, his feet, and mouth sores. We have noticed that he is a bit unsteady, and on his "big day out to the playground" was not able to go up and down the stairs or walk on the suspended bridge without assistance. Please pray for these areas, as we hate to see our little boy suffer.
Despite his pain, his appetite is in full swing....(as are his tantrums), both compliments of the steroids he is taking. His favorite foods of the week have been chips, taquitos with guacamole, and chicken nuggets with BBQ sauce. I am not exaggerating when I say he eats these items NON-STOP, and nothing but these items. Those of you that know him might be saying, "he has always eaten non-stop".....well, you should see him now!! He even wakes up in the middle of the night, wanting to know when Burger King will open :0
He is scheduled to receive another spinal tap on Friday. This will be a bone marrow test where they are able to tell us the % of blasts (% of leukemia) in his blood. We are praying that it is still 0 (where it was on day 8, the last time they checked.) That would mean that he is continuing to respond to the chemotherapy regimine.
He will also have intrathecal chemotherapy on Friday. That is when the chemo is administered into his spine. Just for those that are interested; the leukemia likes to "hide" and two favorite places are in the spinal fluid and the brain. Andrew did not have any leukemia in these areas when he was tested (and we are so thankful to God for that!!) Now, as a preventative measure, they will administer chemo in the spine throughout his treatment, to make sure the cancer does not go there.
Both of these procedures are uncomfortable, but thus far, he has taken them with little complaint.
Please pray for continued healing.
Also, please continue to pray for his doctor, a Christian Woman, Lillibeth Torno. She has been wonderful to us, and would appreciate prayers for wisdom as she treats Andrew.
After this Friday's treatment, we get (I think) a week off, and then he starts a new 9 week series. The new series will be more intense, and we will be going for chemo 4 days a week.
Thanks for all of your emails, your calls and prayers. You have made the past month much more bearable than we expected!! Your caring has literally been the hands of God that carries us, just as in the Footprints poem!
love,
Kim and Doug
Friday, August 29, 2003 11:35 PM CDT Dear Friends and Family,
We just returned from a very long day at the hospital. Thank you for keeping us in your prayers.
Andrew's blood counts looked great! He can even go outside tomorrow, which he is looking forward to doing. (By Sunday the chemo from today will have his counts low again, so we will make the most of tomorrow.)
Unfortunately, the chemo is really bothering his stomach and he is in a lot of pain. He also cant walk due to the pain in his feet. Please pray that these side effects diminish quickly, and that God will give him peace and comfort.
Our next big day, is next Friday. He will have chemo via spinal tap, and they will also do another bone marrow test to check for "blasts" (leukemia) in the marrow. This will be the first such test since the one we did two weeks ago. At that time, the cancer was gone, and we are praying that it will be completely gone next week too.
You are all so amazing!! God is hearing your prayers!
Doug and Kim
Wednesday, August 27, 2003 8:35 PM CDT Dear Friends and Family,
Thanks for all of your prayers. Andrew was released from the hospital today, as his white blood count increased to 1.4. He will take IV medications at home until his catheter is clear of infection.
We will be returning for a long day of chemotherapy on Friday. Please pray that he stays strong, with no infections or fevers, as we go through this next round.
We are so thankful to all of you who have showered us with support and prayers, we know they are making a difference!
love,
The Spragues
Tuesday, August 26, 2003 11:41 PM CDT Dear Friends and Family,
Thank you for all of your prayers and well wishes.
On the good side of things, the nurses finally gave up trying and the doctors are now allowing Andrew to receive most of his medications through his line. He only has one that is taken orally, and that is only Mon-Wed. It is really nice not to have to battle with him over this anymore.
Andrew's white blood count has remained constant at .9 for the past 3 days. The doctors think he may have a virus of some sort, since his count has not shown any improvement. They would like to see it start to recover before he can go home. He is scheduled for his next big day of chemos on Friday, which he will get regardless of his white blood count. So, it looks like we may be here a while longer.
His direct line has been infected, but despite that and the "unknown virus", he has not had any fevers. He has had severe stomach cramps, body aches, and some vomitting today...and they have increased his pain medications to help make him more comfortable.
We are thankful to all of you for showing us so much love and support. We get refreshed by reading your messages!
Please continue to pray for Andrew's good health and absence of "blasts" in his blood.
love,
Doug and Kim
Monday, August 25, 2003 6:55 PM CDT Dear Friends and Family,
Andrew's fever has stayed down, and we are so thankful for that. He has developed an infection around his direct line catheter, and they are currently giving him antibiotics. His white blood count is still very low, it didnt not increase much from yesterday. The doctor said it could be days or weeks until it starts to recover.
Please pray that God brings his count to a speedy recovery so that we can all return home soon.
Andrew is still having difficulty taking his medications, but we are working hard on teaching him to take them like a big boy.
We appreciate all of your prayers, and enjoy reading your guest book entries.
love,
The Spragues
Sunday, August 24, 2003 3:04 PM CDT Dear Family and Friends,
It is Sunday, early afternoon, and Andrew just took his morning meds after a long battle. His next dose is due soon. Please pray that he will adjust to taking them, otherwise he will be getting a g-tube (a tube in his nose!)
The doctor said our stay will be at least a couple more days. They want to see his white blood count (which is currently .8) recover on it's own a little before sending him home.
Please continue to pray that his blood stays clean, he remains free from a fever, and that his wbc recovers.
We appreciate your loving messages and all of your prayers!
Doug and Kim
Saturday, August 23, 2003 2:52 PM CDT Dear Family and Friends,
This entry is being written from CHOC, as Andrew was admitted late last night. After a full day of chemo, he became ill and had a fever. We have been instructed to bring him to the St. Joseph's (across from CHOC) Emergency Room, if he ever gets a fever, which is what we did.
The doctor said he will stay until his blood counts look strong enough to go home, that could be a couple of days or a couple of weeks!! Please pray that we get to return home sooner than later.
Andrew is in good spirits, except for the cranky spells brought on by his medicine.
We appreciate your prayers and know they make a difference.
love,
Kim and Doug
Friday, August 22, 2003 9:38 PM CDT Dear Friends and Family,
Andrew just returned home from his day #14 chemotherapy treatment. We spent the day at CHOC where he received his IV chemos. Lucky for him there were no intrathecal meds today (administered via spinal tap), and no bone marrow test. His blood work looked good today, and we are continuing to thank God for this healing.
Andrew recently got a new haircut, just like his TV friend Caillou. We hope to have a picture soon to show you, he looks really cute. He has remained in good spirits most of the time, although his medications make him a little cranky.
We covet your prayers, as we know it will be petitions made to Jesus on Andrew's behalf that will bring forth complete healing. You can send prayers to prayersforandrew@cox.net and they will one day be made into a book for him.
Andrew is still having some difficulty taking meds, so please pray that we can come to the place where he takes them without a fight, so that they can all get into his body.
He is currently nauseaus from the chemo today, and frequently complains of tummy aches, jaw pain and foot pain. Please pray that these side effects will diminish so that he can go through this treatment with little discomfort.
Andrew loves all of the new toys and cards he has received. He misses his friends, and is starting to become more persistent about wanting to spend time with them. As most of you know, his neutropenec (no immune system) state prevents him from having contact with his friends right now.
His very best friend is his dad, and his sister still makes him light up with a smile. We are enjoying our time together as a family.
Blood and Platelette donations: We have set up a direct donor program for Andrew. You can contact the CHOC Blood Bank in Orange, California, to see about donating for Andrew. There number is (714)532-8339. He frequently receives blood and platelette infusions, and we would greatly appreciate donations.
God bless all of you that have stood by us, supported us, cared for us and prayed for us. We will never be able to repay you for the priceless love you have showered upon us, but we will never, ever forget.
Friday, August 22, 2003 9:31 PM CDT This page has just been created. Please check back for additional updates.
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