about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  make a tribute donation
 

Click here to go back to the main page.

Click here to view older journal entries.


Tuesday, June 7, 2011 10:56 PM CDT

Just a quick update....I know there were many ER visits that were checked-in on facebook the past week, so I thought I should explain ...

Andrew has had a history of kidney stones, since his treatment, and last week we thought he might have one that was blocking his ability to use the bathroom. He has been worked up by the urologist before, but she stopped short of checking for scar tissue that might be causing on-going pain and blockage. We went to the ER, and we could not see a stone, but the doctors again brought up the possibility of strictures....which are a build up of scar tissue that might be causing a blockage. So he has an appt with the urologist again next week...and hopefully we can get this worked out easily.

That was ER visit 1

Later in the week, Andrew had regular oncology and endocrinology visit.....while at the doctors, he became nauseaus...and threw up.

Now, throwing up is not typically a big deal, but with his adrenal failure, vomitting can cause the body to go into dehydration and shock. I gave Andrew an injection of cortisol, but his body was not able to recover on it's own, so we ended up going back to the ER for visit 2.

We already know all the staff at CHOC....and are now becoming friends with those at Mission.

Andrew stayed for several hours, while they stabilized him with fluids and got his vomitting under control.

By the next day, Andrew was fine. :)

He ends up missing a lot of sleep, and school....but somehow is really fabulous at keeping up with his work.

In fact, when I went to pick up work he missed on Friday, his teacher said, "Can we just leave it for him to do in class on Monday?" He gets his work done so quickly, and ends up chatting....doing 2 day of catch up in class is easy for Andrew....and keeps him quiet :)

Ill post again after our Urology visit next week. Thanks for your faithfulness in praying for Andrew.

In the meantime, we are busy here with the talent show tomorrow: Andrew on drums, Christine doing a dance with a friend. And Elise's school has "crazy hair and socks day"

Next week, baby Elise graduates from Preschool!! She cant wait for Kindergarten next year.

Looking forward to a fun summer!

Love,
kim


Sunday, April 10, 2011 6:09 PM CDT

We had our visit with the endocrinologist, and discussed Andrew's adrenal insufficiency.

Basically, the radiation has caused areas of the brain to be damaged....and his pituitary gland (which sends signals to the adrenal glands) is not allowing him to make enough cortisol. These sorts of things are not a surprise, he has been monitored by the endocrinologist, both for his osteoporosis and also because his endocrine system (thyroid, growth, hormones, etc) are expected to poop out as he gets into his teens.

In any case.....it's not a huge deal...we just replace what he is not making. The good news...since these are "replacement doses" of steroids, they should not worsen the side effects that he already deals with from the high dose steroids given during treatment (osteoporosis, eye issues, etc)

The part that is not so great...is he will need to take these meds for life. Your body uses cortisol to regulate body systems and keep your fluids and salts balanced. During times where the body is going through stress, it makes more cortisol ...and Andrew's body will not be able to do that. If he becomes sick, we need to give him extra doses, and if his body becomes "stressed" (vomiting, injury, fever, surgery) he will need to be given injections or the situation could quickly become life threatening.

Clearly, nothing compared to having cancer....but I have to say, I really hate these residual issues....I hate one more thing that he has to deal with. I hate having to worry that if he breaks his arm on the playground that he will need a shot quickly or risk cardiac arrest. It's just one more thing that makes me pray for a cure...for better treatments for these kids. If adults can have "Relays" and events to improve their treatment, why cant we get money for kids? We will keep going...sharing with others, telling about our friends that are no longer here, bringing awareness and raising funds.

This past week, Andrew read one of our VERY FAVORITE books; "Alex and Amazing Lemonade Stand" to the kids at Mission Viejo Christian. It is such a precious book, about making lemons out of lemonade....Alex Scott sure did that!!

And if you feel like doing something this summer...check out http://www.alexslemonade.org They will send you everything you need to hold a lemonade stand. Alex Scott was a very sick little girl, and she held her stands, and asked other kids to do the same, and before she went on to heaven at the age of 8, she had raised over $1 Million for pediatric cancer research....WOW!

Alex, and many other friends were not able to get the cure they needed...but there are so many still fighting; Davis, Jack, Jassmine, Braden.....and unfortunately, there are many more that will be diagnosed....please consider holding a stand this summer, and giving kids the gift of healthy living!

Thanks,
kim


Sunday, April 3, 2011 10:27 PM CDT

Hi Everyone,

It's been almost a year since I have updated.

Andrew just shaved his head again for St. Baldrick's, and Christine cut her long hair off, very short. They are both such great kids (and my baby Elise is too!)...and Im proud of them for wanting to continue to raise funds and awareness for kids battling cancer.

They grew up watching friends go on to heaven, and some of their friends are still in the battle...having had their cancer come back. Certainly what the enemy meant to harm, God has used to create compassion and empathy in my children that they might not have ever had.

Andrew has had a great year.....he continues to play the drums, and I LOVE to hear him play, he is really good. In school, he was a finalist for the Spelling Bee, Speech Meet and Math Olympics. For those of you that know how much chemo and radiation Andrew got to his brain.....and the cognitive damage that was expected....you know what an amazing miracle it is to see excelling in school. Praise God.

We have had our "survivor issues"....still monitoring his osteoporosis, (he had a broken arm and broken wrist this year.) We monitor his growth hormones..he is growing at a normal rate now, but lost about 6.5 inches during his 3.5 years of treatment, and is not expected to make them up. He is at risk for other endocrine issues, and they are monitored regularly.

Andrew's neuropathy (nerve damage) is still the source of pain and weakness through his extremities. He has had PT and OT this year, and I was stunned when testing showed that his hands and feet have lost a great deal of feeling. This coupled with the pain, makes simple tasks such as dressing and writing, hard for him to master.

We had a scare with a mass in his stomach, that turned out to be nothing, praise God. Two tests noted the mass, but when they went into see, there was nothing there!!

Andrew will see his endocrinologist again this week. We have been doing some tests, and found that he has adrenal insufficiency. This is a secondary condition, brought on by the radiation. This might explain some of his muscle weakness and pain (in addition to the neuropathy)...and it would also explain why he falls asleep a lot and just has very little energy. We will discuss treatment options when we go to the doctor this week.

He still has some tics, but they are manageable and we pray they do not get worse.

Something that many people dont realize, is that the radiation to his brain is degenerative...this means the radiation continues to make changes, even years after treatment is done. There were a lot of blood vessels damaged, myelination that never developed, and this is not good for a growing brain. This is the reason that we continue to monitor Andrew for cognitive and neurological changes.

Andrew continues to see his oncologist every few months, to monitor his issues and make sure he stays in remission.

Last Fall, while watching an episode of Mystery Diagnosis, Andrew became interested in a genetic disease...to the point of going on line and studying all about it. Well, there are so many genetic diseases, and he has become more and more fascinated with their causes, symptoms, outcomes....he spends some of his free time researching genetics and his current ambition is to be a, "clinical geneticist" I asked him what the "clinical" meant, and he said he wants to be able to work with the kids and get to know them, not just work in the lab. Man, I sure hope this career goal sticks!!! Im sure whatever Andrew does, he will be successful and do good for others...he is an amazing kid.

We feel very fortunate to have Andrew....10 years old, surviving and enjoying life. He is a walking testimony of the healing and mercy of God!!

Thanks for checking in, and I hope that families battling cancer right now will read this journal and find HOPE.

Love,
kim


Wednesday, July 21, 2010 0:26 AM CDT

Thanks for keeping Andrew in your prayers.

I have been posting some of his prayer needs and updates on Facebook, but I guess this is the best place to post them.

I know that new t-cell families will find this site and I hope that it will give them HOPE. God has done so many miracles in Andrew's life, and I dont want that to get lost in the "survivor issues" that he continues to face.

Recently, Andrew spent 12 hours in the ER for kidney stones. Kidney stones are a by product of one of the chemos, and are very painful for him. While in the hospital, they did some ultrasounds (and then some CT scans) as he appeared to have a mass on the right side of his abdomen.

We have seen his oncologist (my angel!) as well as the gastro dr. (the same one that took Elise through her miraculous healing with liver disease)....and they have ordered more tests. The Gastro Dr. wants to rule out Crohns disease, as it appears to be Andrew's "terminal ileum" (part of his intestines) that is "the mass". It could just be that the terminal ileum is infected or inflamed...in any case, Im going to try to get those labs done this week.

For the most part, Andrew is doing great. He has taken up the drums, and really enjoys playing...and he is getting good!! I love to hear him play!

He is getting ready to enter 4th grade, still excelling in all areas academically. What a major praise that is....I still remember the many, many nights (months and months) of researching treatment options...it seemed the only chance at saving Andrew's life would result in significant cognitive damage. Like a Sophie's Choice that rested in us, the parents....we were heartbroken as it seemed there was no way to win. Now I look at his test scores and know that God had a mighty hand of protection on Andrew.

We have started to see some cognitive side effects, while not impacting his intelligence, he has developed tics, and is at high risk for continued effects....as the treatment to his brain causes long term changes, some that arent seen for 5-10 years. This is always an area for prayer. We are currently battling with the insurance to allow him to see the team of professionals that work with the oncology team, monitoring the changes to the brain caused by radiation and chemo.

Andrew saw his endocrinologist this past week too. We dont have all the test results back yet, but what we do have shows that his osteoporosis is not getting better. In fact, in some areas it is worse. He recently broke his wrist, just got the cast off last week, and is at high risk for more broken bones. This limits his activities to some degree. Unfortunately the meds that were created to help with osteoporosis, were made for older folks, and actually cause significant damage to the bones of kids. So, there arent many options for building his bones...we just pray for God's protection. We will be going in for some MRIs of his hips soon, as there is some concern of AVN (avascular necrosis) a condition that many survivors develop, where the blood supply was cut off to the bones, causing them to die off. Ill let you know when we get those tests back.

The other area that the endo looks at, is Andrew's growth. If you have seen Andrew, you know that he is much smaller than most kids his age. It is more than just a height issue, it is his width, girth.....his bones, his organs, etc. Some of the chemos damage the hormonal systems in the body, which can effect puberty, growth, etc. Prior to treatment, Andrew was on track to be 5'9"-5'10"...not a giant. He is now expected to be significantly smaller than that, when he reaches his final height. While I am thankful to have him here at any size, I sure hate to see him have to deal with any more heartache. We are still waiting for some tests to return, and it will take a few years before we really know the full impact that the chemo had on his endocrine system.

Physically, besides his size, Andrew still struggles with his fine and gross motor skills. Some chemos did a lot of nerve damage, leaving him with peripheral neuropathy. These damaged nerves make for weak muscles, chronic pain and even numbness and tingling in his extremities. Simple things, like tying shoes and doing buttons are hard, and painful. He is in physical and occupational therapy to help with these areas, although they are expected to be chronic.

Andrew certainly does not show the pain and suffering that he endures, he is pretty resourceful. Where it hurts him most, is not being able to play sports or keep up with his peers on the playground. The issue is more pronounced at school than it is in the neighborhood...Andrew tries hard to fit in, and often winds up with a bruised heart.

Cetainly, he has had his share of attack in life....but I remind him that GOD has protected those gifts and skills that HE wants to use. I imagine God said, "Go ahead satan, you can have his bones, and his muscles, his nerves and his physical strength.....Ive no plans to make him an NBA star." ...."BUT, dont you dare touch his brain, or his heart, or his eyes to see those things that matter...I have great plans for this boy...you cant take his life!"

I know that God does have great plans for Andrew....so many people have shared how their own relationship with Jesus was found or strengthened through Andrew's testimony. I know that will only continue...and I will always have the many miracles of healing and protection that can not be explained by science.

Andrew's life is a blessing...surely what the enemy meant as harm, God has used for good.

I appreciate that you continue to pray for him, for these random bumps that come along, for the "survivor effects" that still need regular monitoring.

With summer in full swing, Andrew is looking forward to swimming and drumming and hanging out with his buddies. He just enjoyed TVBS, and has some great friends at church.

Ill update more here, as we get test results back.

Thanks for your support!
kim


Friday, December 18, 2009 2:17 PM CST

Merry Christmas to each of you,

As I type this, Andrew and Christine are at school, enjoying Christmas parties with their classmates.

Andrew is having a great year. He has an amazing teacher who has helped smooth out some bumps...and he continues to be a testimony to God's healing. He took second in the Spelling Bee, which was an incredible acheivement...

The day before the spelling bee, Andrew bumped into a friend, and basically bit down on his own teeth, and broke 7 of them. The chemo and radiation that he endured, during formative years, have essentially turned his teeth to chalk. He has had many dental issues, and the breaking of his teeth was just the latest venture.

To make matter worse, when we went to the dentist, they found that nerves were exposed and they needed to rebuild 4 of the teeth. They tried for a while, and could not get Andrew numb...so he went home without having the work done.

Long story short, he performed the next morning at the spelling bee, having not eaten since lunch the day before, in pain, and with little sleep. I was so proud of him, his strength and perseverance is so integral to his character, and it was a blessing to see.

He finally did get his teeth fixed, his upper teeth were done this week, completely the job for his new smile.

In other news....Andrew recently took up the drums. It seems to be a good fit for Andrew's love of music and performing, and also a great weight bearing exercise for his arms, and also provides the strengthening to his core muscles that he needs. He is taking lessons and already sounds like a rock star (to me!)

As we end 2009, we are so grateful for all that we have seen, all that God has done, and thank Him for his continuing work in Andrew's life.

May God bless you.....may you find that whatever trial the enemy has thrown your way, that God can use it for good!

Merry Christmas,
kim

PS. you can join me on facebook, where I am always posting new pics of the kids.


Saturday, September 12, 2009 12:25 AM CDT

September is Childhood Cancer Awareness Month....please consider donating blood, donating to a group that supports pediatric research, or volunteering at a Children's Hospital. There are so many ways to help those going through this difficult journey....I know the love and support that we received from all of you, certainly made the difference to us! Thank you!

Andrew started 3rd grade this week. Throughout the process of preparing for a new school year; buying supplies, getting new shoes and uniforms, meeting the teacher....it is never far from my thoughts that all of this is a gift from God, a miracle that I truly never thought would come to pass.

While Andrew has moved on from cancer treatment, our life experiences shape how we see each new milestone. I think often of our little friends that are not going to school, either because they are in heaven, or because they are still in the hospital, struggling to survive. I think of their parents, and pray that as they see life going on, as they see pencils and folders, and children laughing and playing, that their hearts would be comforted - as I know it causes their grief to sting.

All of this makes me so thankful. At our last visit to the cancer clinic, as with most every visit...Dr. Torno and I marvel over the work God has done in Andrew's life....it is always a time of thanksgiving, we are so grateful to have Andrew here, cancer free, doing well in school, what a miracle!

Andrew is still at Stoneybrooke Christian school. It is definitely a struggle to pay for private school, but the events in his life only further reassure me that equipping him spiritually, to handle what comes along in life, to understand what happened in his past, is necessary. I want him to have God's perspective, to know God's Word, and to have it strongly integrated into his activities. None of us knows what the future holds for our children, and I believe that the more grounded in Christ he is, the better he will be prepared for whatever life brings.

We expect Andrew to have another strong year academically. Soon he will have his annual cognitive testing. Because his treatment (specifically the radiation to the brain and the chemo shot into the cerebral spinal fluid) can cause degenerative damage over time, it is necessary to do thorough testing and monitor any cognitive changes. We have not noticed any changes, and are hopeful that he will continue to do well in this area....a true miracle!! I remember agonizing over the radition, and when we finally sent him to the table....every day, for 2 weeks....I was certain that he would never do well in school...as we were told the cognitive damage would be significant. But I begged God for His protection, and today am so grateful that He heard us!

Andrew is still struggling physically...as he still has pain from the nerve damage. He has been on a swim team, swimming 4 days a week, and this has helped tremendously. However, his last bone density tests showed that his osteoporosis has not improved (in some ways has gotten worse) so it is necessary to increase his "weight bearing" activities. We have decided to stop swim team, and have him do a once a week swim class. He will now also do basketball and hip hop dance. Both are his choice....both will provide weight bearing exercise that is not in a "contact sport" (since he is at high risk for breaking his bones.)

To be honest, I dont like over extending my kids....3 activities is too much time (and money)...and then Ive got Christine and Elise who are playing 2nd fiddle. I struggle with trying to find the right balance to get Andrew's needs met. We dont do physical or occupational therapy, which we probably should...as I figure activities that he enjoys will be better in the long run...Please pray that his pain is manageable during the time away from swimming, and that these new activities help to rebuild his bones.

Andrew's lack of physical strength and agility makes it hard for him to keep up with his peers at recess...and he is such a social boy, that being left out in this way has really been hard for him. He has had some issues with the kids not including him, which only makes him try harder to be included, which is a vicious circle that ends up with Andrew feeling like he has no friends. It is hard to watch, and I struggle with finding that balance. After all he has gone through, I certainly dont want to see him hurting any more. Of course, as his mom, I see a kid with many gifts, a kid that God has shined upon in many ways....because of all the miracles that have happened in his life, I am certain that God has His hand upon Andrew, and I am learning to trust that even the hard times will be used for God's glory.

By the way, over the spring and summer, Andrew had some urological tests, and while we never found what the problem was, it has not returned. Praise God. All of Andrew's other testing (eyes, heart) were fine too!

We will go back to the oncologist in October, for his regular blood work and check up. Ill update then, and keep you posted about how he is doing in school.

Thank you for caring about Andrew and keeping him in your prayers...some of you for many years! Please continue to pray that he would make friends and feel loved, and also join us in thanking God for all of the miracles he has done in Andrew's life.

love,
kim


Monday, May 11, 2009 1:14 AM CDT

Happy Mother's Day!

I was able to celebrate as a mom, for the first time, 9 years ago. My little guy was in my tummy, and I was so excited to have him in my life.

Today, my thanksgiving is multiplied. I have seen the frailty of life, as I watched him struggle through his cancer treatment...as I watched many children struggle. To have Andrew here today is a great gift.

We recently had some urological testing...well, sort of. he was to have a test that required catheterization, and one nurse spent over 10 minutes cramming the cather in, resulting in incredible pain and blood. The end result....there is some blockage and the Urologist is tyring to decide how best to move forward; either she will try to catheterize him herself (she worries if Andrew will allow this, after the horrific experience this week)...or she may have him go under anesthesia (although the testing is limited when he is under.) I told her it's up to her, whatever she think will be the best option for determining what the problem might be. Please keep this in your prayers...for his test, and that it gives us clear insight into what is wrong, and that the issue would be minor and easy to fix.

Andrew had his eye appt. this past week too, and I am so thrilled that he is doing well in this area. The doctor said he was suprised that Andrew doesnt have cataracts. One study notes that 80% of children who received radiation and steroids have cataracts 3-5 years post treatment. Granted we havent gotten to the 3 year mark yet...but this was great news and we thank God for his continued protection.

Earlier this month, Andrew went to the district speech meet, and received the highest level of award. We also were able to receive his scores, and he received 149 out of 150 - WOW! Im so proud of him!!

He does continue to struggle, both physically and emotionally, with his weak physical strength...he just wants to be able to play sports at recess....not be the kid that is the "ref" or is teased for not being very good. He is such a kind boy, and it really hurts when he doesnt fit in this way.

I try to tell him, that God has protected those gifts that He needs Andrew to have, for His purpose. Without the leukemia, doctors expect Andrew would have been 4.5-6 inches taller...and undoubtedly would not have had the muscle weakness and pain as a result of treatment. Andrew knows that God allowed this to be taken...but God has protected many more things; his brain, his heart, his eyes, his very life! I have no doubt, that in 20 years, Andrew will not think about his sports skills, but will be grateful that he is a social, caring, smart young man...with a life that is directed by God.

He is still swimming, and we are looking for a basketball league for summer. I am also waiting to hear back re: some outstanding endocrine tests.

Thank you for your continued prayers.

I thank God for allowing me to hug and hold the boy that first made me a mother, and for the beautiful, sweet daughters that have blessed me too. Happy Mother's Day to all of you Mother's reading this today.

Love,
kim


Tuesday, April 14, 2009 11:00 AM CDT

Sorry for the delay in posting, Caringbridge made some changes and I couldnt figure out how to post a new update. I just talked to customer service, and here I am :)

Andrew had an appt. with the urologist, and she wasnt sure what the problem is, but she wants to rule a few things out, so he will be having a test coming up....I dont remember the name of the issue, but he'll have a catheter that will watch how things are working down there....Ill keep you posted when that happens, and we are praying for 1. answers to this issue, and 2. easy resolution to this issue.

His oncology appt. and labs went great....we continue to thank God for his remission!!

His appt. with the endocrinologist is where we went over his bone tests. We had always been told that once he stopped the chemo that his bones would start to rebuild. The dexascan showed they are the same, or even a little worse! It's sort of a tricky thing....as weight bearing exercise is needed to rebuild the bones, and yet the osteoporosis makes him at high risk for fractures - so we need to make sure his exercise is safe. The doctor recommended tennis....as you are on your feet, without much contact. Andrew asked about basketball, and the doctor said that would be ok. I want to find a league that is not super competitive, so the kids arent knocking each other over. Ill start looking to sign him up.....and will also keep him in swimming which is good for his pain.

The doctor is also going to get him a new OT eval. He still has fine motor issue....hard time buttoning his clothes, tying his shoes, writing in school, etc. This is accompanied with pain, so we will reassess where he is at and get some recommendations on how to help him in this area.

His cardiology tests all looked fine :) Praise God!

We still need to get in to see the eye doctor (treatment can cause cataracts and also optic nerve damage) so we need to check each year...and we are behind on this one!

Otherwise he is doing great. We just had his teacher conference, and he is doing fabulous. His test scores continue to be a testimony to God's healing and protection. He got straight A's, and also is going to compete in the district speech meet the first of May.

Thanks for keeping him in your prayers.....

As I am typing, I am on the phone with the doctor re: his upcoming urology tests...the primary insurance wants him to come in and have a "well check" before they approve his urology tests...UGH! How silly...the kid is seen by his oncologist every other month, complete with labs. He has just had extensive testing and "checking up" by a host of specialists...he doesnt need anyone else to stare at him and take his blood pressure.

Ill let you know when he has his tests completed.

Please keep our friend Jassmine in your prayers. She and Andrew went through treatment together, and her leukemia has returned. Her mother is heartbroken and his asking God for a miracle, please pray for one too.

love,
kim


Tuesday, March 17, 2009 12:24 AM CDT

Hi Everyone,

It's been a long time, but I wanted to update.

Andrew continues to amaze us, as a testimony of God's healing. He is doing well in school, recently placing for the Spelling Bee and is also going on to regionals in May for the Speech Meet. He loves school and gets straight A's. Moreover, his academic skills remind me daily that God heard my prayers. The treatment Andrew had to his brain was experimental, typically not given to children that young due to the damage it would cause....it was very harsh. And yet, Andrew shows no signs of cognitive loss. We continue to ask for prayers (and thanksgiving), as the deterioration happens over time, and often the delays are not seen for 5 years.

Physically, Andrew still struggles. We just got his bone density scores back....and they are not good. They are essentially the same as before (when he finished treatment more than 2 years ago) showing osteoporosis and putting him at high risk for fractures. I had been told that since he is young, he would begin to build up his bones. We havent seen that happen. The oncologist said that she will talk to the endocrinologist about what to do...and we are meeting with them both in 2 weeks. At that time we will also test Andrew's hormone levels.

Aside from the osteoporosis, Andrew continues to suffer from peripheral neuropathy (nerve damage) which is very painful. He still swims on a team, which helps to manage his pain, but it is disheartening that this condition has not seen improvement. It not only causes him pain, but overall muscle weakness, impacting both his fine and gross motor skills. This makes Andrew very sad, as he feels "different", not being able to play sports as well as his peers.

The past 6 months, Andrew has also had some pain issues...I guess it's ok to post...since he asked his class to, "pray for my testicles" he apparently isnt shy about it. But he has been having pain, and we have done tests....so far nothing has been determined. We are still waiting to see a urologist to help figure this out.

Andrew had his cardiology tests (EKG and Echo) last week, and they both looked good (we got those each year to check for heart damage that can occur over time, due to the chemo.) We are still waiting for his eye exam, which should be soon.

Overall...we are very happy. We are thrilled that Andrew remains cancer free. We are so grateful that his mind is sharp and he is enjoying life. We wish he didnt have to deal with his pain issues, and it reminds us that cancer treatment is incredibly harsh on children. We need to work towards treatment that will heal the cancer without damaging so much more of the body.

On a side note..today being St. Patrick's Day, Andrew told me this morning that he wanted to participate in St. Baldricks. It is an organization that holds events around the country, raising money for pediatric cancer, primarily through people getting sponsored to shave their heads. In years past, we have attended events with the Taggart Family (who's sweet son John went to heaven, after a long battle with cancer.)

I reminded him that telling me 30 minutes before we leave for school, on the day of the events, doesnt really give us time to participate. He cried...he wants to go to one and shave his head...he even gave me a handful of change that he wants to donate. But he has swimming during the time of the event (and he needs it for pain management)....AND, we have a family portrait coming up (with parents too!) and Id prefer he not be bald, just for this once in a decade picture (It doesnt matter that Christine cut her bangs off at the scalp today!). But it was nice to see that Andrew is still mindful to find a cure...it tells me that he still remembers the importance of the mission...and while I dont like that he is burdened with the concerns of childhood cancer...it tells me he will grow up grateful, knowing what God did for him.

Thanks for checking in...Ill write more after we see the endocrinologist and urologist.

Love,
kim


Friday, September 19, 2008 0:14 AM CDT

Hi Everyone,

Andrew had his urinalysis (thank you Quest Diagnostic Labs for never letting me know if his authorization was in, despite my constant calls, until just the other day.)...at least now they are done. They looked fine. No blood or protein in his urine.

This rules out any weird kidney issue, and we are thankful to God that all is well.

The labs also seemed to indicate, that while he is mildly dehydrated....as the nurse explained it to me, dehydrated in the same way she is when she only drinks a glass of two of water a day. She and I figured, although we both acknowledged, "we arent doctors"...(it's like something all of us non-doctors feel obligated to say, as we hash over medical tests and labs....KWIM cancer moms?)...we figured that he probably isnt dehyrdrated enough to be causing the headaches and vomitting....but then again, the non-doctors wonder loudly, if it was a relapse or brain tumor, wouldnt he be vomitting daily? or at least more often than he is? Who knows, this is one area best left to the ACTUAL doctors.

So, tomorrow, Andrew will have his MRI, "with contrast" (ie. a shot). It's funny, because a few people have said, "oh"...as if an MRI is painful or something...I dont know....unless it's a 3/4 inch thick needle into the hip bone (sans anesthesia), or a round of cytoxan, the rest is sort of not so bad, and an MRI is comparable to having your temperature taken, on the cancer scale of medical activities. We will have it in the morning, and Im guessing that *someone* will know the results early next week. I also think we go in for "our" regular oncology appointment too next week, so it will be a good time to get the low down on things.

Please keep Andrew in your prayers. He is otherwise doing great...looking and feeling fine. Really enjoying 2nd grade, and not grumbling so much about his daily swim practice. The girls are fabulous too!

Please also pray for Blaine, dad of Kendrie. Kendrie went through cancer treatment around the same time as Andrew...she is a little girl we met online (ok, her mom and I were part of the same online support group.) Her dad had cancer in his face (or nose, or throat, or someplace in his head.) and has had extensive (and painful) surgeries and radiation...and now it is back. You can leave messages of support on Kristie's (the mom's) blog; www.notquitewhatihadplanned.blogsot.com (the name of her blog sort of says it all, doesnt it??)

Ill keep you all posted......

love,
kim


Thursday, August 28, 2008 11:46 PM CDT

Hi Everyone,

We have been busy rounding out our summer, getting ready for school to start next week.

Both Andrew and Christine did very well at swim finals, and will continue swimming 4 days a week. The 5th day, they have soccer. It is nice to see Andrew gaining strength. He is still on the weaker end of his peers, but nowhere near the delays he had in years prior, it's been great to see him getting stronger.

There are so many yucky things about childhood cancer, and they never really go away....not completely.

Many people ask me if Andrew is "cured"....what do I say? I am so grateful for the healing God has done, and I dont ever want to stop thanking Him. The side effects Andrew deals with, like chronic pain, fatigue and weakness....are really nothing in comparison to what he suffered for 3.5 years on treatment. Sadly, when a little boy has spent half of his life on chemo, and most of what he remembers of his life....he lives with a lot of the pain without complaint. He still uses prescription pain meds, but only minimally compared to just a year ago. So, we celebrate that the cancer is gone, and he is doing well.

Is he "cured"??? I dont know that I believe there is such a thing...at least not yet.

His chances of relapse are still looming....they will start to decrease more and more after he hits his "2 years OT" milestone (end of this year!!)....but besides relapse, there are secondary cancers that we must now watch for, and then there are the life long side effects...some still unknown, since giving kids such large doses of chemo/radiation for so long is still an experiment.

So, while Andrew is doing well, cancer and it's effects are never far away....

This past week, we were reminded of all of Andrew's risks.

He'll be embarassed one day...or maybe not....but this past weekend, after church, he complained that his testicle was hurting. In fact, he was wincing in pain.

Andrew has an incredible pain tolerance, and it takes a lot for him to even admit pain. While many people worry about torsion, a leukemia mom knows that relapse often occurs in the testicle.

I immediately called the oncologist on-call. He calmed my fears by telling me that relapse usually does not have pain...but also suggested that we go to the ER to have it checked. He wanted to rule out torsion (twisting)...but wanted us to come to the ER in Orange, to be near the cancer clinic, just in case.

After thinking about it, and realizing that the cancer clinic was closed on the weekend anyways...we went to the ER closer to home.

The ultrasound ruled out torsion....and they did a urine test which showed blood and protein in the urine. The sent it away for more results, which I received last night.

All they told me was yes, he did have blood and protein in the urine (we already knew that!)...they suggested a kidney function test.

I spoke with Andrew's oncologist today, and she said that she does check for kidney function in his monthly labs, and they have been fine thus far. She wants to repeat the urine test, and if things are not cleared up, to do a renal (kidney) ultrasound....just to be safe.

We also talked about his "dehydration"....this has been an on-going battle, and his urine test showed that he was dehydrated. His monthly labs usually show this too.

However, in discussing his symptoms, I mentioned that he gets dehydrated 1-2x a week, resulting in a severe headache and vomitting. Unfortunately, these are also symptoms of brain tumors and a spinal relapse...two different things....both of which Andrew is at risk.

So, she is ordering an MRI of his brain (the radiation can cause brain tumors) and a spinal (to check the spinal fluid for relapse.)

So, while the testicle seems to have gotten off the hook (a biopsy is the only way to detect a relapse in the testicle, but the lack of mass has us feeling ok about it.) We have opened a can of worms requiring other tests.

While he probably doesnt have a relapse or a brain tumor, sadly, he is at risk for them. We have known many kids to relapse, we know many kids who had cancer as a preschooler...beat the cancer, only to be diagnosed with a brain tumor down the road...because again, these kids are on very intense, experimental trials, and the drugs that save them also cause them a lot of damage and put them at great risk for future cancers/disease.

I dont think any parent goes through this experience and feels their child is "cured"...there are too many things we have to monitor....the regular visits to the oncologist to make sure the cancer is still in remission....it's hard to escape.

You never forget the friends you lost. You never forget watching your own child, lying down, so tired, sunken in eyes, dark circles, white skin, pale lips....there were many times that I could not look at Andrew without imagining he was in a casket, because, honestly, he looked barely alive...4 years old and 23 pounds....his life was very frail.

While we thank God daily for the healing....we know it is an ongoing battle, and we are reminded every time we have one of these situations...we are reminded that there really is no cure, not yet.

Please keep Andrew in your prayers, and all the other children who have been diagnosed with cancer...even those that have been off treatment, as they still need your prayers, they still have plenty to fight.

He should be getting his MRI and spinal in the next weeks (I hope) and we will do his urine test soon too.

Also, we would appreciate prayers for our friend Samantha ....she was just a baby when she stole Andrew's heart...he still calls her, "Baby Sammy", although, she is getting to be a big girl now. She had a tumor in her tummy....which she bravely fought. Now, years off treatment, she has begun having seizures. Please pray for her, and her family, and wisdom for the doctors. So much of the drugs given to these little kids has just wrecked their bodies, and I pray that God would restore Sammy back to good health, a living testimony of His healing power.

love,
kim


Wednesday, August 6, 2008 1:54 PM CDT

We are thankful to God, for bringing Andrew to this place.....it was 5 years ago today, that he was diagnosed with cancer. We are grateful for the healing in his life.

I've written more on my blog www.heartshapedhedges.blogspot.com

Thanks for your prayers; past, present and future!
kim


Friday, July 25, 2008 1:42 AM CDT

Hi Everyone,

Andrew had a good visit with the oncologist Wednesday. It was a relief to get his labs back, and see things in the "normal" range.

On Tuesday night, his legs were aching, causing him to wake up crying...and come into our room. Despite the usual routine of a heating pad and rubbing his legs...he continued to cry in pain. Even after two doses of tramadol, the pain persisted.

Andrew's leg pains come and go, but we typically find them more severe when he has taken a break from swimming. This wasnt the case this week, as he has attended his daily swim team practice.

Leg pains are a sign of relapse, so the fear of the cancer returning only adds to seeing your child in pain.

We thank God that Andrew's labs were good, reminding us of God's continued healing.

As for his bone pain, we pray that one day he will have relief.

Andrew is doing well otherwise...He and Christine have their final season swim meet tomorrow. They will both swim in the championships in early August.

Our sweet Elise turns two on Monday, so we are planning some "elmo" festivities this weekend, and the kids cant wait to celebrate her 2nd birthday.

Thanks for checking on us, and for your prayers for Andrew.

love,
kim


Sunday, July 20, 2008 3:33 PM CDT

Happy Summer Everyone,

The kids are all doing well, enjoying the lazy days of Summer, except that "lazy days" includes an hour of swimming laps every morning for swim team.

Andrew continues to argue with me every day, not wanting to swim. I go back and forth in my head with the pros and cons. The swimming has allowed him to wean off some pretty strong pain meds, it is building up his muscles, increasing his lung capacity (he has some damage to one lobe)...AND, I also think that the saline has helped his sinuses. He had recurring sinus infections prior to joining the team, and we had a referral to the ENT (many of the kids end up needing surgery, as the chemo does such damage to their sinus cavity and mucos membranes) - but since swimming started, over a year ago, Andrew's sinuses have been great. The doctors had told us to do the saline washes in his nose each day, and I think the pool kind of does that for us!

The doctors dont know if the pain in his "bones" (nerve pain) is temporary or permanent....and sometimes I think maybe it's gone.

Recently, the kids took a week off swimming for Vacation Bible School....and just a few days in, Andrew started needing prescription pain meds again for the pain.

So, for now, the swimming will continue...and Im just not sure about keeping him in for Fall and Winter again, but Im thinking I might.

And, as much as he protests, he is showing real improvement. he recently moved up to the 7-8 year old group. Even though he is one of the tiniest kids on the team, his swims with his own age group...kids that are bigger, kids that USED TO BE faster. He is doing really well, and has shaved many seconds off his times. He isnt the fastest, but he did get 3rd place in back stroke last week....and did a solid job. His times are right there with kids his own age, and for that I am really proud of him!! I will admit that the handful of kids that swam year round (as opposed to just swimming in the summer) are faster...but he is getting there! So, this makes me want to continue him on year round too, knowing that perhaps his body has crossed a threshold, getting stronger and stronger.

Andrew's acting stuff is going pretty well.....he has a national commercial on TV and in the movie theaters...it's called, "Stand Up 2 Cancer" (how ironic!) it's hard to see him, he is in a couple of scenes, but your best shot to get a glimpse of him, is in the swimming pool scene, where he is splashing around in the water.

He also has done some print work for a toy company, so he will be in catalogs and on toy boxes...which should be in stores this Christmas.

He was one of a only a handful of kids for a final selection of a national McDonalds commercial (when you see the one with a young annikan skywalker...that was almost Andrew!)...and he was also in the final selection for a film directed by Grant Heslov (George Clooney's partner)...but alas, the other boy was selected. In any case, he is doing pretty good considering his first audtion was just a few months ago.

And while Andrew doesnt like swim team, Christine LOVES it. She cant get enough. Just 5, and tiny, she is still finding her way and learning the strokes, but she is always smiling and really cherishes her place on the team.

Elise would love to swim too.....but has just as much fun running around the pool deck for 2 hours each day....mostly eating snacks, often pilfered from other kids!

Coming up, the kids will start their immunization process. Andrew had some of his shots before getting diagnosed....and we will see which ones need to be redone, and then work on catching him up. Christine was only 6 mos. old when Andrew first got sick, so she has hardly had any shots ...and same with Elise (except for tetanus)...so, we will start the process for all of them. Christine is particularly afraid....she knows her, "Kindergarten shots" are in the future, and is not happy. She has rarely had a shot, and I think she has an overdeveloped immagination about how horrible they will be. So, please keep her in your prayers, that they go smoothly (she needed blood last year, and went screaming down the doctors hall, and hid under a chair....)

We are otherwise doing great....we enjoyed time with Grandpa around July 4th, and also had our Colorado cousins over for a few days.

I started a new venture, I am now a Dove Chocolatier! Dove chocolates have started "at home" tasting parties. So, it's like having my own Food Network show....going into homes and showing off some fun chocolate treats...and the guests have a blast, sampling everything from mousse to smoothies, fondue and even chocolate martinis! Dove started this in Feb. 2007, but only opened up to the Western part of the country in May 2008. So there are less than 100 of us in the western 15 states...which has been great for me!! Im really enjoying all the fun, and the extra money is a blessing.

I hope you are all enjoying your summer too.
love,
kim


Saturday, June 28, 2008 0:45 AM CDT

Things have been going well here, I guess time flies.

The kids had a swim meet yesterday, it was Christine's first. She was so ecxited, and as is her signature style, she emerged from each race with a giant smile. She always thought she probably got first place...I think she got a 4th and a 5th (she will get her ribbons next week.) Her back stroke was more than 5 seconds faster than her freestyle (and her freestyle was faster than her timed trials at practice) so she is off to a good start for a tiny 5 year old.

Andrew did good too. It is still a struggle for him to have speed, but I got tears in my eyes as I watched him do freestyle...he is now in the 7-8 grouping...so kids who are older, but physically bigger and stronger, and he held his own. He was one of the slowest, but he wasnt way behind, he stays with the group.

Other than the swim meet, the kids didnt have swim practice because they were at Vacation Bible School all week. They had a great time, and were excited to bring a friend from the neighborhood that doesnt regularly attend church. They learned about how powerful God is.... :)

I never know how Andrew is really doing with is neuropathy....until the swimming stops. Sure enough, since he isnt practicing this week because of VBS, he has been crying a lot about his legs hurting. UGH!

We are so thankful for how well he is doing, especially considering all that could have happened from the cancer and the drugs....but I really pray that he is able to get stronger and outgrow the pain issues.

I know there are a lot of people that think he is "free and clear" (because they wonder why we still go to doctors or why I ever even *think* about cancer anymore).....and others that tell me not to worry about the future, not that I really do, but.....

There were two articles published this week....one about how children's cancers are left out of research money, and what that means for the kids: serious side effects, experimental drugs, etc.

The other, was about the increase in survival rates, and the cost at which it comes. It certainly isnt because of increased research dollars....it's because the kids are given so much....and they are just now trying to figure out how to follow the kids, what issues they might face.

This is the reason that our doctors really cant tell me if Andrew's pain will continue forever or get better...they dont know.

What they do know, is that by their 30's, half of the kids are having life threatening illnesses. It discussed that issues that typically occur to the elderly, are occuring decades earlier in kids who survive cancer....assumedly from the damage to the organs/systems from treatment.

Not that I am spending time worrying about when he is 30 (although I do pray that he can grow up and have a family, be healthy...I do worry about how he will get insurance, or if he will be able to afford the medical issues that are likely to arise.)

Between the late term effects, and our regular lab visits - which remind us of a still significant risk of relapse, and the specialists we see and incidence of secondary cancers (we have known many kids that got radiation for leukemia, only to wind up with brain tumors as teens.)...well, it's just hard to not think about cancer.

It's not that I dwell or worry a lot.....but, it's not something I can completely not think about.

Sometimes I think that when Andrew was in treatment, it felt like he was playing on a busy freeway. Now, he is just too close to a busy street. As a mom, Id be naive to not worry...but as a mom who is grateful for all that God has done for Andrew, I try not to worry too much.

Andrew's acting has been going well. He has only gone on a handful of auditions, but from them he got a print job for a toy company and they told his agent they want to use him again in a month or so (in fact, he did so well, that they had him reshoot pictures that other models had done...because after working with him they thought he would do it better.) His Public Service Announcement for Stand Up 2 Cancer is currently airing...have you seen it??

He had a 2nd call back for two national campaigns...one another PSA, and the other one was just this week for McDonalds. We found out today he wasnt selected, but his agent said it was amazing that he got to the final call out of so many kids.

Tomorrow he is FINALLY shooting a video for a Christian film company, on God's mircles in people's lives.

Monday, he was selected to come and audition - including reading lines - for a film, which is being produced (or directed, not sure if I even know the difference) by George Clooney's partner.

And, while these auditions may sound like he is busy....LOL....really, he sleeps on the 1-2 hour drive...spends less than 30 minutes total for the wait and audition, and then we drive back...so, lots of sedentary video games and naps for him :)

Elise is doing great...her independence just continues to develop....she can say most everything now, and does! And Ive come to realize that it's almost pointless to tell her, "no" because she insists on trying everything....so much like her brother in her inquisitiveness and exploration(although, he was a better listener!!)

My favorite thing is when Elise says, "Im precious" (you say it to her and she will repeat it.) She really is precious.

We hope you are all enjoying your start to summer.....thanks for checking in and keeping us in your prayers.

love,
kim

PS. Please pray for my Aunt Joyce. My Uncle Art lost his battle with cancer, and I know it will be hard for her to face each day without him, they were a great couple.


Thursday, May 29, 2008 9:09 AM CDT

Hi Everyone,

We are humming along here.

Andrew is doing great. His lab results all looked good. I still need to do the bone density test, but the blood work was good.

Andrew started his new hobby of "acting"...he has gone on 4 auditions, booked one commercial, and was called back for another commercial. He has a "showcase" in couple weeks, where he will do the material he studied in his acting class, including a scene from Tootsie. Im really proud of him. He is in a class with a bunch of high school kids, and he was the first one to have everything memorized and not need a script anymore.

School is well....he is still swimming too.

Christine is really developing into such a young lady. She is absolutely loving swim team and works so hard, taking a lot of pride in her accomplishment. She is also getting excited for Kindergarten, with her preschool graduation approaching.

Elise is talking more and more and more. She is also developing that independence that makes things a little more difficult for the mommy, but it's a good thing.

We had a great time at the Taste of Ladera, and the Alex's Lemonade Stand did very well. We love contributing to such a worthwhile organization, helping to find a cure for kids cancer.

Speaking of pediatric cancers.....Andrew's first commercial is now up and running on TV, it is a Public Service Announcement for Stand Up 2 Cancer, a major initiative to raise money and find a cure for cancer. They have pulled together all of the cancer organizations to join together for this major event (a telethon in Sept.) but sadly, I think they forgot to include pediatric cancers...I wrote about it on my blog there is also a link to watch the commercial from my blog. Check it out...Andrew is in the pool scene and the Dodger Stadium scene...but dont strain too hard trying to see him :)

Thanks for checking in,
love,
kim


Thursday, May 1, 2008 11:07 AM CDT

Hi Everyone,

I find myself writing less on this site, and more about our day to day adventures on my blog.

That really is a good thing, as we are doing normal things and the cancer world is no longer in the forefront of our lives.

Andrew saw the endocrinologist last week, and the oncologist too. I have a bunch of labs and tests to get for them, including his bone density test.

We discussed his overall fatigue/weakness/pain issues, and both doctors said that some kids struggle with this for sometime, there really is no research to tell us if it will be a life-long, chronic issue...or what would make it better. Both agree that his swimming is a great activity, and encouraged him to keep going with it.

To be honest, Im feeling overwhelmed with all of his doctors appts....it's just hard to fit them all in.

Christine joined swim team recently, and I truly thought she would quit after the first lap! WRONG-O! She LOVES it. Everyday she asks if it's a "liquids" (team name) day. She gets out of the pool with a smile each day, and when I ask what is the hardest part, she says, "nothings hard!" Im really proud of her.

We have a busy weekend...Christine performs a few times in a recital on Sunday, and Saturday kicks off our first, Alex's Lemonade Stand of the year.

We will be at the Taste of Ladera, a fun community event (location has changed to Founders Park, for those interested in attending.) We are excited to have Olympic Swimmer, Janet Evans, joining us to sign autographs, and we are raffling off two Webkinz (the new American Cocker Spaniel and Chicken)...so, busy getting all those details in order.

If you are interested, I have set up a virtual lemonade stand , please stop by and have a drink, and share the site with a friend.

Thanks for the continued prayers, we appreciate all of the kindness, and are grateful to be able to share Andrew's good health with you.

love,
kim


Friday, April 4, 2008 6:45 PM CDT

Sorry so long in updating....

I was trying to post Easter pictures, but I cant get them to resize....We went to see the EAster Bunny, and after waiting in line for an hour, Andrew ran up to his lap, as did Elise, and Christine hid behind the flower cart (prop)...I finally coaxed her to stand close enough to be in the picture...they looked cute in their matching sundresses, even if Christine wasnt smiling. Ill keep trying to post it.

As for the news you may have been waiting for, Andrew won 2nd place in his speech contest. We took him out for frozen yogurt and told him how proud we are of him....I tried real hard to keep all my "poor-sportsmanship" feelings to myself, but did tell him that I heard every single kid in the school (as a judge) except his class...and out of everyone else, I thought he was the best!

Christine has a new accomplishment...she tried out for the swim team, and made it!

She was "nervous" and was clingy, almost teary, to the point that I didnt even want her to try out, because she was acting so timid....she made me sit on the edge of the pool, take my shoes off and dangle my feet in the water (that's as close as I could get with my clothes on!)..she later told me she was embarassed to have everyone staring at her...but she got in and swam her lap. She went up and back without stopping, doing her side breathing, using her big arms. I was very proud of her.

She is small, just making the 5 year old age cut off, so, not much power (especially when she stops kicking) but she has her breathing down very well, probably as well as Andrew does, so I know that once she builds up her strength, she will do well. She is excited and so proud of herself. She took her new team suit to school today for "sharing."

Elise has a new "skill" too....getting out of her car seat! She is like a little Houdini and just can not be contained. I remember going through this with Christine, it's so stressful. I cant exactly keep stopping the car and strapping her back in...because it's hard to get her in, and then by the time I get back to the driver's seat, she is out again anyways!

Andrew has a friend spending the night tonight. A very nice boy, and Andrew is excited. They both like spy stuff and get along well. Plus, this kid goes to bed at a decent hour, so he is an easy one to have sleep over.

Today, I got a nice surprise in the mail. A plaque from Alex's Lemonade Foundation, for having one of the top 100 stands last year. They also sent a letter, saying they had thousands of stands, and they appreciated our contribution. They have now raised over $18 million dollars!! I love this organization....they hand pick the research, it goes straight to the scientists or hospitals studying in areas that need it most, to find the cure for childhood cancers.

We are gearing up for our 2008 stands.... Ill keep you posted.

love,
kim


Thursday, March 20, 2008 2:26 PM CDT

I hope everyone is enjoying the Easter Season. It's been hard for me to truly enjoy the spirit of Easter, because it has come on so quickly. I cant believe Easter is this weekend, I havent even taken the kids to see the Easter Bunny yet!

Yesterday was Andrew's speech meet. I volunteered to be a judge, but naturally was not a judge for his class, in fact, I couldnt even hear the kids in his class....but I did enjoy hearing all the other classes.

The *winners* will be announced on Friday. Each class will have a 1st, 2nd and 3rd for each category (1st graders could do a poem or a Bible verse, Andrew did a poem.) The 1st place winners will go on and compete on a regional level, just like the spelling bee.

Even though I was a judge, I have no idea who won in each class. There were 3 judges, and our scores will be averaged.

I do know that in Andrew's class, there was a 3 way tie for first, and he was one of the kids.

Talk about nerve racking for me!!

Andrew really wants to win and go on to compete, but it's nothing that would upset him if he didnt win. Me on the other hand, not so good of a sport I guess.

Last night, I was pondering why I care so much...I mean, if he wont be heart broken, why would I be?

I figured out, that I just want him to be recognized for his strengths.

As his mom, of course, I think Andrew has a great deal of strengths, important strengths, strengths given by God that will help him develop into a wonderful man someday.

Being a little kid, Andrew doesnt always see his strengths, in fact, it seems more and more that he feels like he is not as good as other kids. I have tried to explain to him that the gifts God has given him, will be gifts that really are important as he grows up, but as a child, he lives in the present.

When kids are good at baseball, they get a lot of immediate recognition, for making a play or hitting the ball. When they are good at soccer, everyone cheers when they score a goal. Andrew doesnt get those kinds of accolades re: his achievements.

I feel like a lot is expected of Andrew. I know that I have high expectations for him, and so does life. But I feel bad that he isnt always rewarded for rising to the occasion.

I make him swim every practice. That's four days a week. Most of the kids go twice a week, some more, some less. Very few of the kids swim four days. For Andrew, because the swimming has been so good for his pain management, and because he is not as strong as the other kids, I think it is important for him to go four days.

The lanes are numbered, 1-8. The slowest kids are in lane 1...fastest in lane 8. Lane one has 1-2 kids, both 5 years old. Lane 2 has Andrew, and one or two other kids, 5 years old. His peers, the other seven year olds, are swimming down around lane 6.

I feel bad that Andrew puts so much work into swimming, hard work, and does not yet see or understand the benefits. Other kids that swim as often, at his age, are kids that win a lot of ribbons and medals. They blow past him in the water. I wish he were able to get the same kinds of social rewards for his efforts, the kind of recognition that matters to a seven year old.

Instead, he is building his damaged muscles and repairing his nerves, and experiencing less pain. I try to tell him these things, and that he will be stronger in the end, and he listens, and acknowledges the value, but I know he really just wishes his speed would improve so he could go to a higher land and win more medals.

Andrew is one of the most courageous kids I know. I personally would NEVER walk into a room, knowing that I was going to get a giant needle into my hip bone, and throw up for hours afterwards. I just wouldnt do it Not for a "happy meal" toy from a treasure box, not for a lollipop, not for $100,000. I would never do it!

But Andrew always did. And to this day, he calmly goes up the elevator to the 4th floor lab, sits down and gets an IV needle put into his vein. He sits patiently while they draw 3 viles of blood. He does it every month, without any hesitation or complaint.

How do you explain to a seven year old, that his bravery, his courage, the determination and perserverance that is deep within his soul, are special gifts? HOw do you convince him that God has given him something special, more special than the ability to catch a baseball?

Andrew has been gifted academically. I think it is more than just a gift, it is a miracle that we never imagined, and I know that God has given it to him for a purpose. I know that one day, Andrew will appreciate his ability to read, comprehend, spell, do math in his head, but it's just not now.

He doesnt know how smart he is. He doesnt know that breezing through school will be valuable one day.

I think that this speech meet, is a way for Andrew to be acknowledged for his gifts.

There are other kids who are equally or more gifted, so Im not saying that he is more special, or more deserving, I just want to see him get some sort of carrot that says, "you are good at something, keep going!"

Friday we will find out the winner, and while I know that all 3 of the kids in the tie are deserving, selfishly, Im hoping Andrew is the winner. Ill keep you posted.

Andrew is doing fine otherwise. He has adapted nicely to his bright orange cast, now filled with signatures. He is swimming with it (covered in a rubber contraption) and writing with it in school, and there are no more comlaints of pain. He got is root canal re-capped, as well as his other cavity, and will go back on Monday for more dental work.

Christine is doing great, she is becoming more and more of a little lady every day, doing well in swimming and dance. She is excited for Kindergarten next year, she cant wait to be at school with her brother.

Elise's vocabulary is blossoming. Every day we near more new words. She is so independent, just like her brother. She is always on the move and likes to explore. She is very easy going, but if you try to hold her down, you get a loud, "NO!"

Our life right now seems so normal, the kids are all doing great, and we are really enjoying watching them grow each day. They are all such a joy.

love,
kim


Thursday, March 20, 2008 2:26 PM CDT

I hope everyone is enjoying the Easter Season. It's been hard for me to truly enjoy the spirit of Easter, because it has come on so quickly. I cant believe Easter is this weekend, I havent even taken the kids to see the Easter Bunny yet!

Yesterday was Andrew's speech meet. I volunteered to be a judge, but naturally was not a judge for his class, in fact, I couldnt even hear the kids in his class....but I did enjoy hearing all the other classes.

The *winners* will be announced on Friday. Each class will have a 1st, 2nd and 3rd for each category (1st graders could do a poem or a Bible verse, Andrew did a poem.) The 1st place winners will go on and compete on a regional level, just like the spelling bee.

Even though I was a judge, I have no idea who won in each class. There were 3 judges, and our scores will be averaged.

I do know that in Andrew's class, there was a 3 way tie for first, and he was one of the kids.

Talk about nerve wracking for me!!

Andrew really wants to win and go on to compete, but it's nothing that would upset him if he didnt win. Me on the other hand, not so good of a sport I guess.

Last night, I was pondering why I care so much...I mean, if he wont be heart broken, why would I be?

I figured out, that I just want him to be recognized for his strengths.

As his mom, of course, I think Andrew has a great deal of strengths, important strengths, strengths given by God that will help him develop into a wonderful man someday.

Being a little kid, Andrew doesnt always see his strengths, in fact, it seems more and more that he feels like he is not as good as other kids. I have tried to explain to him that the gifts God has given him, will be gifts that really are important as he grows up, but as a child, he lives in the present.

When kids are good at baseball, they get a lot of immediate recognition, for making a play or hitting the ball. When they are good at soccer, everyone cheers when they score a goal. Andrew doesnt get those kinds of accolades re: his achievements.

I feel like a lot is expected of Andrew. I know that I have high expectations for him, and so does life. But I feel bad that he isnt always rewarded for rising to the occasion.

I make him swim every practice. That's four days a week. Most of the kids go twice a week, some more, some less. Very few of the kids swim four days. For Andrew, because the swimming has been so good for his pain management, and because he is not as strong as the other kids, I think it is important for him to go four days.

The lanes are numbered, 1-8. The slowest kids are in lane 1...fastest in lane 8. Lane one has 1-2 kids, both 5 years old. Lane 2 has Andrew, and one or two other kids, 5 years old. His peers, the other seven year olds, are swimming down around lane 6.

I feel bad that Andrew puts so much work into swimming, hard work, and does not yet see or understand the benefits. Other kids that swim as often, at his age, are kids that win a lot of ribbons and medals. They blow past him in the water. I wish he were able to get the same kinds of social rewards for his efforts, the kind of recognition that matters to a seven year old.

Instead, he is building his damaged muscles and repairing his nerves, and experiencing less pain. I try to tell him these things, and that he will be stronger in the end, and he listens, and acknowledges the value, but I know he really just wishes his speed would improve so he could go to a higher land and win more medals.

Andrew is one of the most courageous kids I know. I personally would NEVER walk into a room, knowing that I was going to get a giant needle into my hip bone, and throw up for hours afterwards. I just wouldnt do it Not for a "happy meal" toy from a treasure box, not for a lollipop, not for $100,000. I would never do it!

But Andrew always did. And to this day, he calmly goes up the elevator to the 4th floor lab, sits down and gets an IV needle put into his vein. He sits patiently while they draw 3 viles of blood.

How do you explain to a seven year old, that his bravery, his courage, the determination and perserverance that is deep within his soul, are special gifts? HOw do you convince him that God has given him something special, more special than the ability to catch a baseball?

Andrew has been gifted academically. I think it is more than just a gift, it is a miracle that we never imagined, and I know that God has given it to him for a purpose. I know that one day, Andrew will appreciate his ability to read, comprehend, spell, do math in his head, but it's just not now.

He doesnt know how smart he is. He doesnt know that breezing through school will be valuable one day.

I think that this speech meet, is a way for Andrew to be acknowledged for his gifts.

There are other kids who are equally or more gifted, so Im not saying that he is more special, or more deserving, I just want to see him get some sort of carrot that says, "you are good at something, keep going!"


Monday, March 17, 2008 11:18 PM CDT

Happy St. Patrick's Day!

Our family is all together again. After Doug and Elise got stranded in North Carolina for a night, they finally made it home today. Doug said Elise travelled so easily, surviving 12 hour days being shuffled from plane to plane, with no problem at all.

He enjoyed his time with his family, and it was very generous of his sister, Jenny, to get him a ticket so that he could celebrate the birthdays of Grandma and Grandpa Sprague this past week. Elise had fun too, chasing kitty kats around the house, and growing her vocabulary. Doug said she gave a lot of affection to her Georgia family.

Andrew is feeling better, after a painful weekend. His arm was put in a bright orange cast today. We also made a trip to his dentist to recap his crown that fell off over the weekend. While there, we added a new filling. The chemo pretty much thrashed his teeth, destroying the enamel, turning them into soft little nubs of chalk, and the dentist pointed out today, a bit of damage on his new permanent teeth (most likely compliments of the radiation.)

In some ways, cancer is the gift that keeps on giving. If you thought 3.5 years of chemo, and a lifetime of worries about relapse wasnt enough, the brittle bones and thrashed teeth are only a small bit of the side effects that pediatric cancer survivors will face. We are grateful for the healing God has done in Andrew's life, and we pray that it continues, protecting him from the many risks that cancer treatment has left him with.

Christine is excited, because she is experiencing her first loose tooth. She sure is growing up. In fact, even though Andrew has grown a great deal this past year, Christine has continued to grow too. She is only a few inches shorter than Andrew, and this past weekend, sooo many people asked if they were twins. I used to get that a lot, and after her latest growth spurt, Im getting those "oh twins!" comments again. It's kinda cute and the kids love it!!

Andrew's speech meet competition is Wednesday. He has his poen down pat, and has good expressions. The only thing that might stand in his way, is he says, "Muver and Faver" instead of Mother and Father. We have tried to work on his "th" sound, but no luck with those words. So, hopefully the ding in the "clarity" category will be minor and he will make up for it in the other areas. Ill keep you posted on this.

I hope you all are enjoying St. Patrick's Day....

Love,
Kim

PS. please keep our oncologist in your prayers. Her husband had heart surgery this past week. They both are selfless, committed, wonderful doctors (he works with AIDS patients.) They are strong Christians, and I know they would appreciate your prayers.


Saturday, March 15, 2008 9:20 AM CDT

What an exciting weekend we are having!

The anticipation was building all week. Doug's parents both celebrate birthdays this week, and as a special treat, Aunt Jenny offered to fly Doug out to Georgia to surprise them. Doug thought it would be fun to take Elise with him, since we wouldnt have to buy an extra ticket. They left Friday morning, and we knew this would be a great memory for everyone.

Back home, Christine had received a special pass to go to Disney's California Adventure to preview the new Pixar parade and Playhouse Disney stage show. We had scheduled viewings in the morning, and then were free to enjoy the park on our own for the rest of the day.

We had so much fun! We watched the show and parade, and then went on some rides with friends. The real highlights, came later in the afternoon, when we spot the new High School Musical street show. WOW! I didnt even know they had this ....they have a moving stage, with all the actors singing and dancing. The stage stops and they do a whole show, with songs, lots of audience participation. It was so enjoyable. We stayed and watched it twice, and Christine sang, danced and swooned over "Troy Bolton" the entire time. He pointed to her and smiled more than once, and she is holding on to that!

She also wanted to go on the Tower of Terror, Andrew's favorite ride, now that she is tall enough. I had never been on myself, so we were both in for a real adventure. She screamed the whole time, and I was so worried about her, that I leaned over and held her the entire time shouting, "Im right here with you, you are safe!" over and over. When the ride ended, she said she didnt like it, but by the time we exited, she wanted to do it again.

We were in the building when my phone rang, it was Andrew's school. I couldnt here his teacher, as the connection was awful. I was trying to hurry and get outside so that I could understand her, I could tell from her voice that there was trouble.

I wondered if Andrew had done something horrible....if he was hurt.....

She said, "playground".....I couldnt make out all the words, so I asked if he was hurt...she mentioned "crocodile tears" and I knew something was wrong. Andrew doesnt cry over pain very easily, if at all. You have to know him and all that he has been through (as many of you readers do) to know that this kid can take a lot.

Once out in the open air, I had better reception. She said he had fallen and hurt his arm. I told her we were leaving Disneyland immediately, and would be there within the hour.

Christine and I hurried to the school, and found Andrew in the office, resting, holding hir right arm.

I knew right away it was broken. He was holding it, supporting it. And even though there was no obvious break, I knew he would not be holding it that way, more than an hour after the fall, if it wasnt broken. His right arm was also hot to the touch, unlike the left. He winced in pain, giving it a 5 on a scale of 1-10. Andrew's 10 is a 98 to the rest of us, so I know a 5 really hurts him.

We went straight to the urgent care, and x-rays showed a break to the radius and another break to the ulna, both about 1/3 of the way up his arm.

Honestly, we have been fortunate that he has never broken a bone before. His osteopenia (thinning bones) has left his bones fragile and the doctors warned us that he would probably have broken bones because of this condition.

He is in a splint for now, and should get a cast on Monday.

He is frustrated, with a lot of angry tears, over the pain, over not being able to play baseball. He also worries how he will do anything at school with his writing hand immobilized. He considers the one good thing, that he gets a break from his daily swim workouts.

This is sad, because the past week, his swimming has been amazing. A few mechanics have "clicked" for him, and he has been swimming better than ever. I hate to see him take a break now!

We kept him loaded up on tylenol with codeine all night, but it doesnt seem to help much. He is in a lot of pain. I told the doctor that he probably has a tolerance to the tylenol with codeine, as he takes is fairly often for his leg pain, but the doctor didnt offer anything different. The urgent care staff didnt know him or his history. I may try to give him something else, like his tramadol, which is stronger.

We had some great things planned today, his little league game, and the Spring Celebration (carnival type event) that happens in our community. We are going with his latest "wife" a sweet girl from swim team, and her wonderful family. This girl is so sweet and delicate, but put her in water and she dominates! She and Andrew make an adorable couple! Last night, Andrew called her to tell her about his arm, and when they ended their conversation, she said, "I love you" and he said, "I love you too" It was adorable!

But this morning, he doesnt want to go to the carnival, he is crying, his arm really hurts. We are going to try to enjoy ourselves and pray that he gets used to his arm and that the pain subsides.

In the meantime, Doug called to tell me that he and Elise had great flights to Georgia, and that she was the princess of the plane rides, charming all the passengers. His parents were surprised and they should have a great weekend.

He told me not to be alarmed when I see the news, as tornadoes have done a lot of damage to Atlanta, but he asssures me they are fine.

so, a couple of kinks in the weekend. We are still hopeful for a lot of fun. Please pray that Andrew's arm feels better and that Doug and his family are safe from the Atlanta storms continuing this weekend.

love,
kim


Monday, March 10, 2008 1:46 AM CDT

We had a great weekend, warm, sunny, with lots of normal kid things going on.

Saturday, Andrew had a little league game. You can really see his growth compared to last year. He is using a regular bat, the lightest one, but it's not the plastic bat he used last year. I cant say he has mastered any level of control, in fact, he is pretty hilarious to watch; he goes up to home plate, and no kidding, hits the bat on the plate at least a dozen times. Then he gets ready, and swings (typically no where near the ball) and then the momentum of the bat swings his entire body around. He has gotten a couple of hits, and makes it to first base safely most of the time (usually thanks to some poor fielding by our opponents.) But it is better than last year.

The area where I see the most growth, is in his running. He runs when he hits the ball, which he didnt really do last year. We were lucky to get a jog out of him, and then he was easily winded. This year, he runs, runs to the base, runs to the ball in the field, runs during practice warm ups, it's been great to see this.

Fielding is still tough. I think it's a combination of the motor skills and coordination, he just is really weak in those areas still. He can throw the ball a short distance, which is an improvement, but he isnt very good at helping to get the ball and make a play.

If you didnt know Andrew, you would think he had terrible ADHD, and was totally unable to focus in life. He almost refuses to look at the batter, even when his coach tells him constantly. He goofs around, being social, or hopping around in his imaginary world of spies...just doesnt pay attention to the game. Since I do know Andrew, I think he does this as a cover...since he knows he cant really do the fielding, he feels better about goofing off than admitting he cant catch the ball.

I explained to him, that nobody cares about his skill level. Some kids on the team look like they are ready for the pros, and some dont, that isnt what matters. What matters, is trying your best and paying attention.

Since Andrew does well academically, I used the analogy of school. I said, "what if you had a team for the spelling bee. what if someone on your team was a good speller, but they were goofing around and never heard the right word, and so they always missed it. they would make your whole spelling bee team lose, wouldnt that bug you?" He, naturally, said yes. I told him that is how the coaches and team are gonna feel if he misses the ball on purpose, because he wasnt paying attention. I told him that if he watches the batter, and stays focused, he will be able to do a lot of great things for the team.

I reminded him that he is much stronger this year, and that he is getting stronger and faster. He doesnt have to feel bad about not being able to do the same things as the other boys, because he is getting just as good as them.

I hope he can believe that. The other day, he told me he feels different than other kids at school, because he cant play what they play, and they dont like to play what he wanst to play (house or spies.) It's hard to see him feel this way, because he is so social and outgoing, and it is a real strength.

He is unable to see, at his age, that he has so many great skills; bright, funny, outgoing, kind, brave.....those are all things that will make him liked, successful, and well equipped socially...but he doesnt see that yet.

One thing that did happen today, that I hope helps boost his spirit, is that we pulled off the training wheels and he rode his bike. We had him ride on the grass at a park down the street, so he wouldnt hurt if he fell, and he did fantastic. He still has that urge to quickly jump off his bike (which causes him to crash) when he starts to feel out of control, and I am teaching him that he can simply break and put his foot down on the ground. He has been trying it, and I think after one more day of trying, he will have it down pat. I was really proud of him. It's a blessing to see him doing normal things and growing and blooming.

Another area that has been great for Andrew, is his acting. At the beginning of the year, we put him in an acting class. The other kids are all in high school, but the teacher said he fits right in, and does everything they do. He has been practicing a scene from Tootsie, and almost has it memorized (several pages.) The entire class will be performing their pieces in Los Angeles in June, where "industry folks" are in attendance. They do this so that the kids have an opportunity to showcase their skills and get an agent.

Andrew actually signed with an agent a few months ago (although I just got his work permit, so he hasnt been sent on any auditions yet.) His teacher had originally suggested that we wait until the June showcase, but after a couple of classes, she recommended an agent, saying that he was really talented.

I have my hesitations about the acting biz, but honestly, Andrew really enjoys stuff like this, and has the skill set to do well, so I figured this was a good time to give it a try and see if he likes it. School comes easy for him, so it's a good time, because he would be fine even if he misses school for auditions.

He is such a great kid, and we are so thankful that he is doing well, I know that any doubts he has about his place in life will work themself out as he continues to grow and get stronger.

As for the girls, they are both doing great. Christine is starting to read, and she is very proud of herself (we are too.) Elise is talking more and more, mostly asking for, "cheese" and noticing all the "babies" "puppies" and telling us when she goes "pee pee".....funny thing, is that baby, puppy and pee pee all sound the same :)

I Hope you are all doing well, and looking forward to the Easter season.

love,
kim


Thursday, February 21, 2008 3:25 PM CST

Today is another cold, off-and-on rainy day. These are Andrew's favorite days.

Yesterday we went to his visit with the oncologist....he seems to have recovered fine from his pneumonia and ear infection. She said the ear is still red, but healed.

His blood chemistries looked fine, except that he continues to have a few areas that are out of wack...creatinine and also his potassium is low. He eats a banana every day before swim practice....so, it's not for lack of eating potassium. These low levels indicate dehydration, and they can also indicate muscle weakness (damage).

Every day I pack a bottled water for Andrew, and most days it comes home unopened :( I have tried to stress that as his body and muscles are getting healthy and strong, they really need to have some water...but it doesnt help.

Andrew is a highly, self-motivated child. The key term being "self"....which is a positive, that he motivates himself...and a negative, as if something is not motivating to him, he doesnt really want to do it.

One of the few things that does motivate Andrew, is the coins he earns at school. They earn them through good behavior, and also for donating to the class missions project. He is forever wanting to go around the "find" money around the house (ie. Doug's counter where he empties his pockets, or my change holder in the car)...to trade them in for coins. I pretty much never allow this.

I was so happy that his teacher agreed to let Andrew earn coins for drinking his water. Starting next week, I will send 2 bottles, and he will need to drink one before lunch, and one before school is out, and earn a coin each time he complies. I am encouraged by this and think it will be a huge help in getting him to drink water. His body is still worn out from the years of chemo, and in order to rebuild, he needs to do all he can to keep hydrated.

Im waiting for authorization for his specialty appts; eyes, heart, physical therapy and occupational therapy assessments. We do have our appt. with the endocrinologist in April, and I am hoping to see improvement in Andrew's bone density, and also get some insight into his muscle weakness issues.

Overall, Andrew is doing fantastic, truly much better than we ever imagined. Thanks to all of you for praying for him and asking God to intervene with his cancer, I really believe it made the difference! In fact, each time we visit with his doctor, we both marvel at how well he has done, and much of our conversation is about God's mercy and healing.

Yesterday, when we were remarking at how well God has protected Andrew, Dr. Torno mentioned that the new protocol for t-cell included a regimine similar to Andrew's, as well as a regimine that added a different strength of chemo (HD MTX). Since the kids are all on experimental trials, there are different variations of treatment, with the purpose to see which one gives the best survival rates, and also to see how the different treatments do re: side effects.

When we were coming up with our own plan to change Andrew's treatment, we had planned to do the HD MTX, and opted not to when we added radiation. Our doctor said they are finding the kids with the HD MTX are having a great deal of cognitive side effects. Now, the radiation is known to have even worse cognitive side effects...so, it's not that there is a good choice....but Andrew has done so well, that it was a confirmation to us, that we really were led by God re: the treatment we gave to Andrew.

Aside from the cancer stuff.........Andrew is doing well, started Little League and is on the Orioles. He really wanted to play, and I have noticed that he is able to run after the ball like the other kids, something that was really hard for him last year. He continues to swim 4 days a week, just over a mile each day, and is gearing up for a swim meet this weekend. It's also opening day for LL, and picture day :)

Christine is doing well, still dancing and also has started swimming again. She really wants to be on the Liquids swim team with her brother, so we have her in lessons to "warm up". The two have such interesting personalities...so different. Andrew is a kid that just never quits, no matter how hard, he just does things. I know there are days he doesnt want to swim, and he tells me so.....but once in the water, he doesnt complain. I have seen many kids stop, cry, want to quit, etc. and Andrew just never does that...he didnt do it with cancer treatment, and he doesnt do it with any of the things he faces.

Christine, is a bit different. She is an easy going child, but when the tough gets going, Christine likes to take a rest (a nice way of saying "quit") She has done it with tap dancing (too hard), soccer (makes her sweaty)...and I wonder if she will push through swimming, because swimming a mile is not all fun and games. My rule, is if she starts something, she finishes it...so, we are easing into swimming...making sure she is really ready for it before having her try out for the team.

All the kids had a great weekend in the snow...we went up to the mountains. Doug and I found it to be more work than relaxation, Im writing about our adventures here but, we made lots of memories and the kids had fun :)

Thanks for checking in,
love,
kim


Tuesday, February 12, 2008 8:47 PM CST

Hi Everyone,

Sorry for not posting.

I think last time I wrote, I was in preparations for Christine's birthday week, and the same week was also Andrew's "Star of the Week" week (which can be just as busy as birthday week.)

I had every intention of updating you about both things...along with pictures, and then the kids got sick.

Christine was the one that sounded sick (horrible cough), but the doctor said she was fine.

Andrew was brought in for an earache, (no other symptoms, he had a fever the day of Christine's party, but a few days later he felt FINE!) but he was diagnosed with pneumonia!

Elise had come down with the fever and a cough just two days prior, and she had pneumoia too. Hers seemed to get worse, and 2 days after the doctors visit, we ended up in the ER because she was having a hard time breathing.

Maybe that is why I didnt post, could hardly bring myself to admit that we were at the ER again! LOL.

In any case, the kids are all doing better now, and the weather has been glorious, really feeling like Spring!

I dont know if I metnioned it here, or on my other website , but Doug got me a new camera, however, our computer is so old, that it doesnt support the software for the camera. So, putting the pictures up takes some work....and I think I was hoping to show you the birthday pictures for my next post.....

Thanks for faithfully checking and praying....I am hoping to get those pictures up soon.

love,
kim


Friday, January 25, 2008 1:12 PM CST

Yea! Elise is all better!

We just returned from the doctor's office. He opened up her chart, looked at her results and said, "Wow!" with wide eyes and a shake of his head.

I said, "All better?" (I had already called for the labs, and knew they had returned to normal.)

and he said, "Better than all better."

Despite all the frustrations we had with the doctor's office, we stayed with this doctor because everyone we know (our pediatrician, oncologist, and the doctors when Elise was hospitalized) told us he was clinically the best. So, we stuck it out, and Im glad we did.

It was interesting to hear his "theory" on what had caused the issues for the past 5 months.

*here is some medical mumbo-jumbo for those interested*

There is a liver disease called, "biliary artesia", which is very serious. Half the time a liver transplant is required, and often it leads to other organ damage and early death.

Biliary artesia typically occurs within the first two months of life.

The doctor thinks that Elise developed biliary artesia at an older age (14 months or so)...and that because she was older, her body was able to rectify the situation on it's own, something newborns cant do.

They dont know what causes biliary artesia, maybe a virus or infection, but they dont know.

I thought his hypothesis was interesting for a couple of reasons...

One, everything we have read on the internet the past months, has pointed to biliary artesia, minus the symptom of jaundice.

Biliary artesia is, essentially, bile duct obstruction, and he said that because her body was larger than a newborn, the obstruction did not completely damage her liver, and it was able to heal from it.

The other thing that is interesting, is the concept of factors (toxins, infections, viruses, etc.)effecting our bodies differently at different ages/stages.

For example; we know that certain pediatric cancers are more common with certain age groups. Osteosarcoma typically occurs to the long bones, during the "growth spurt years", pediatric leukemia (which is believed to have different causes and treatment from adult leukemia) typically happens to preschoolers.

Our oncologist has talked about how everyone gets "cancer cells" (which is essentially a damaged cell that mulitiplies out of control)....but typically, when you get a damaged cell, the body is designed to weed it out. However, if that damaged cell is replicating at a high rate (ie. growth spurt, or early years when cells replicate more quickly) the body can not overtake the cancer cell and it then out numbers the good cells.

Now, to take this tangent one step further, with my own theory, which I have shared with our doctor.....

Andrew had t-cell leukemia. Leukemia is cancer of the white blood cells, and your white blood cells are essentially your "immune cells". Most are b-cell, the less common "fighter cells" are the t-cells.

Let's say that a succession of events damaged Andrew's t-cell.....theoretically, the body should be able to weed out the damaged cell. But, what if Andrew was taking a nutritional supplement that claims to "boost t-cell production" ?? What if this supplement that claims to improve immune function (ie. increase t-cells) had made it so the number of (damaged) t-cells were increasing at a rate that the body could not weed out?

It's an interesting thing to think about. The idea that certain diseases occur, most often, during particular stages of development, is interesting.

The idea that God created our bodies to heal themselves naturally (in ideal circumstances) is also interesting.

The notion that trying to "enhance and improve" these natural processes, can sometimes be detrimental, is also interesting.

Our oncologist has told us, that she recommends staying away from things that claim to be "immune boosters" or anything thing else that gives you a "super" dosage of a normally positive, healthy substance. Our body is not designed to work with excesses, of good or bad.

There is so much research that needs to be done regarding the causes of childhood diseases, and it may be impossible to ever know what causes things like cancer, but it is interesting (at least to me) to ponder the different theories of the processes that may occur.

In any event.....all this to say, that Elise is doing great. God has healed her, by allowing her body to work this issue out...I know all of our prayers were heard, and that His hand was upon her, mending her, strengthening her, and I am thankful that she is now well.

Love,
Kim


Tuesday, January 22, 2008 12:39 AM CST

Yesterday, after a week of calls and messages to the doctor and the lab, and several conversations about how HIPPA does not prevent the MOM from getting medical info about DAUGHTER, and more frustration than my brain could handle, I was able to get Elise's lab results.

All the tests that were done came back in the normal range, with the exception of the apparently VERY SPECIAL pancreatic elastase test, which was low. The nurse said, "she mustnt have eaten much fat that morning." and I said, "It was a fasting test, so, she didnt eat anything."

I am so glad that after 5 months of this, that we are seeing her labs come back into normal range. I also think, well I definitely KNOW, that her poop is getting better. It's not diarrhea all the time, and it has some color sometimes....it seems to me that she progressively got better from whatever it was....that is my hope anyways....we will know more when we go back to the doctor, our appt. is this Friday.

Thank you for keeping her in your prayers. We know that God has had His hand upon her, and we are hopeful that when we see the doctor Friday, he will confirm that whatever was wrong has now been healed.

Elise is feeling great...she is so sweet. The older she gets, the more different she looks from Christine. Christine's hair stayed darker for longer, and was very thick by this age, and also very curly. Elise's hair is straight and more blonde. Funny, Andrew and Elise look identical at this age, it's just so interesting to me to watch my kids grow and develop into their own little people.

Elise is at the VERY BEGINNING stages of potty training....Im gonna write about it here

Andrew is doing great. He is "Star of the Week" at school next week. This is a big source of excitment for him, and he is all into making his "About Me" poster, and carrying around the class mascot (a stuffed frog) everywhere he goes.

He also became an official member of the Polar Bear Club. The pool heater broke at the swim team pool. They did replace it, and had hoped the water would warm up in time for practice, but it didnt. So, on a chilly afternoon/evening, the coach gave everyone the option....and Andrew, who rarely complains, got in and did his workout. Out of over 100 kids (all of whom are much bigger than him, as the team goes from 5-16, and clearly he is one of the tiniest with the least amount of flesh)...less than 20 did the workout. The water was 75 degress, typically it's 85. After the workout, I greeted Andrew as he climbed out of the pool, wrapped in a towel, handed him some dry clothes and his warm parka and he went into the bathrooms. About 15 minutes later, as I walked near the bathrooms, I could hear him sobbing. I went in, and he hadnt taken off his suit...he was shivering and through is tears said, "I cant move my legs, I need my neurontin." I felt so bad, and quickly dressed him, with the furry swim parka on top. Most of the other kids were finding the same issue...now out of the pool, they were so cold and many were crying. One of the dads went and got them all hot chocolate. It took Andrew about an hour before he felt ok. I told him that one day he and his friends can remember this and laugh, "remember when we joined the polar bear club, LOL"..but for now, I was proud of him for being so brave and pushing through his laps, even when it was hard. Sometimes I am just in awe of how much he can do without complaining.

Christine had her little dance recital and really enjoyed herself. She doesnt much like sports that make her run and exert tons of energy, but she sure loves to dance. She is getting geared up for her 5th birthday party. I LOVE doing special things for Christine....for so long she was really in the shadows of Andrew...from 6 months old, I spent all my time with him at the hospital, clinic, and she was with Grandma J or a babysitter...and she stood by contently while Andrew got attention and gifts from others....she is such a sweet and pleasant girl, I love watching her SHINE.

We are planning a "doll party" for her birthday, where all her friends will bring their favorite doll. We will have a doll cake, and play "pin the bow on the doll".... She is really looking forward to it.


That's it around here, I will update you after our doctor's appt and Friday.

Thanks for the prayers!
love,
kim


Thursday, January 10, 2008 5:13 PM CST

Sometimes I think I must be losing my mind. I wonder if everyone else just rolls with the bumps in the road, and how, sometimes no matter how hard I try, I get stuck in difficult situations.

Maybe my patience has just worn thin over the years of having to "advocate" for health care...things that you assume will be handled, are not, unless you make a concerted effort to get them done...and it's tiring....besides that, I have zero patience for nincompoops who clog up the medical beauracracy with inefficencies or ignorance.

Today, I kept Elise from eating or having her morning milk, while I got the other two ready for the day. Once Andrew was dropped off at school, Elise, Christine and I went over to get her labs done. We went to the lab near our house, the one that does Andrew's labs, the one we went to (and called twice) over the past weeks, the one that told me they couldnt do Elise's *specialty* labs. We went back, because the doctor's office said they COULD do the labs.....

Here is how it all went down, after parking in the hospital parking structure, traipsing up to the 4th floor with two little ones, and entering the lab offices....

I signed in, and handed the order to the "guy in charge"

He immediately noted that two of the tests were for stool samples, and said, "Ill need to give you some sterile containers for these two tests, and you'll have to bring it back."

"oh, I brought her diaper with me" I said, holding up the ziplock freezer bag with a soiled Pamper inside.

lab guy: But, that's not sterile

Me: I can use this stool for the sample, just the container I put it in needs to be sterile. (was he thinking he would get "sterile" poop??)

lab guy: You probably wont have enough

me: Oh, I have plenty for two samples

lab guy; seems defeated that he will indeed have to process these two samples today.

Then lab guy looks over the orders and says,

"I dont know what a 'stool elastase' is, we dont do that here."

me: I have the code, your main office gave it to our doctor.

lab guy, after reviewing the code and looking it up on the computer; Your orders say, "stool elastase" and my code shows a "pancreatic elastase", they may not be the same thing.

me; Is the pancreatic elastase a "stool" sample?

lab guy: yes

me; Im pretty sure that would be the same test

lab guy, thinking he is gonna get out of this or something; well, Im not sure that is the same test.

me; Look, our doctor called your office and had them look up the code, is that the same code?

lab guy: yes

me: then it's the same test....pancreatic elastase, stool elastase, sounds like the same test to me.

lab guy: well, we need to be sure.

me; Fine, let me call the doctor................

Me to doctor's nurse; Im here at the lab, trying to get my daughter's tests run, as ordered A MONTH AGO, and the lab guy is confused..........

lab guy; IM NOT CONFUSED

me: um, you guys gave me the code for the "stool elastase" test, but the lab calls it a "pancreatic elastase"...albeit a stool test, and the lab guy is confused....

lab guy; Im not confused....

I finally hand my cell over the lab guy, who gets his OBVIOUS CONFUSION cleared up by the gal from the doctor's office....

I mean, really, is this ridiculous or what??

When we finally go in to draw the labs, he had 4 viles to fill. When you can get blood from Elise without blowing her veins, it is slow going. Throughout the draw, he kept saying, "this is coming out in a trickle, I dont know if we will get enough."

and I kept replying, "well, it may take some time, but she is doing fine, we need to get the blood."

I mean, it isnt as if she doesnt have blood in her veins, but he didnt seem to want to take the time to let the vials fill.

Finally, he takes out the needle, and then looks at the vials and says, "I dont know if this will be enough."

me; um, then lets get some more....the doctor is just going to make us come back, we need these tests, WE HAVE BEEN WAITING OVER A MONTH TO GET THEM.

lab guy; well, there might be enough.

me; ok, well, if you think there is enough, fine, but if not, let's get some more, no sense being here and not getting what we need.

lab guy; yeah, I dont know if it's enough.

me; well, not being a scientist, I dont know either, can you call and ask and find out how much you need?

lab guy; well, I need (says how much)....

me; did you get that much?

lab guy; no

me; then, lets get some more

lab guy; well, if you want me to poke her again.

me; it's not that I WANT you to poke her, BUT, we did come here to have these tests run, and no sense not getting the blood to run them. That's what we are here to do.

lab guy; ok...........

he draws from her other arm. Now, her first arm was going slow, but there was no reason that he had to stop short...he didnt blow a vein, she wasnt pulling the needle out....but, anyways, he got her other side, and after a bit, took the needle out and said he was "pretty sure" he had enough.

When I left, I just had to wonder if I was in the Twilight Zone or what. If we come in to do labs, why is it such a hard thing? If a 1 year old is able to sit and get it done, by golly, the people that do it for a living need to just do their job.

This, by the way, is the same guy that turned us away in person, and on the phone, in the past...saying they couldnt do those tests. Im not sure what his deal is, if he doesnt like running labs, probably about time to find a new job, KWIM??

Anyhoo....the labs are done. I am praying that the results are back soon, and that they show that whatever was going on has cleared up on it's own. The liver has a great capacity for healing itself, and God has a greater capacity for hearing our prayers....

Ill let you know if I hear anything.

Im off to take Andrew to swim team.

love,
kim


Thursday, January 10, 2008 0:34 AM CST

Hi Everyone,

We are back into the swing of life here, with school, swimming and everything else returning to normal schedule.

I am still battling my sinus infection, and am still in amazement that the worse sinus infection of my life came about when my nose was completely clear. I have a tendency to get sinus infections, but usually after a cold or allergies keeps me plugged up for too long....not the case this time...totally clear to breathe, but after 10 days of antibiotics, Im still dealing with the pain. I go back to the doctor Friday, so Im sure Ill get more antibiotics. And, not to be too graphic, but the pressure makes my teeth hurt so badly, that I end of flossing them with such a vengeance that I thrash my gums...does anyone else do that?...anyways.....

Andrew is doing good. He started the Winter Season for swim team, and is back in the pool M-Th for an 75 minutes every afternoon. They will have some meets coming up, which is always fun. I still have all of his appointments to make, but have been focusing on Elise and havent gotten on the ball with him. He is doing so well in the grand scheme of things, but because he is far from out of the woods (with both the cancer and serious side effects) it is important to stay vigilante re: his medical stuff. Plus, while we are so grateful that he is alive and doing well, it still doesnt take away the pain of the things he still suffers. This week, he has daily been sad about being left out of "football" at school. I guess the other boys play at recess, and since he cant throw or catch, he doesnt play, and he feels left out. Not a big deal, really, but I hate that there are still little things that he has to deal with, considering that he went through so much during the years of harsh treatment.... But he knows his body is getting stronger, and that there is nothing wrong with him, it's just that his body has to catch back up.

Christine is doing great, as usual, she is such a delight. Her birthday is at the end of this month, I cant believe she will be 5!! She is trying to decide what type of birthday theme to have; hula, princess, or go the the American Girl store.....decisions, decisions....

Elise...well, I have been so completey frustrated with her medical situation. The thing that makes is managable, is that she seems to feel just fine. As for her diarrhea, sometimes I think it's gotten better, and sometimes I think Ive just gotten used to it..who knows.

I have been trying to get her labs done for nearly a month now!! I have taken her fasting to labs, only to be told that they dont have the materials to do some of the tests requested. I have spent hours on the phone talking to people with insurance, labs, doctors, etc......and besides feeling like their should be some sort of LAW that you cant work in the capacity of answering phones if you dont have 3rd grade communication skills....I have almost pulled my hair out, because it's hard to get basic info from folks.

FINALLY, after my voice mail messages to the doctor got less than friendly, his nurse called me back, and she said the lab near our house (the 2nd one I went to...the one that does Andrew's labs) COULD do Elise's labs. Which made me furious, because the guy there absolutely said they didnt know how to do two of them!!

So, tomorrow I will take her, again, to get the labs done. And her follow up appt. is for the 25th of this month. (nearly 2 months since her stay in the hospital!!) I made sure that all of her previous doctors visits, progress notes and lab work was sent to the gastro doctor, so that he can have all of her info before moving forward.

Sometimes, I want to just ignore this whole thing, especially since she feels fine....but her lab work was very worrisome, so, we shall move forward, and just pray that whatever was going on with her liver has been healed.

I hope you are all back into the swing of things, now that the Christmas holidays are behind us....and I hope that 2008 proves to be one of good health and happiness for all of you.

love,
kim


Wednesday, January 2, 2008 1:16 AM CST

Happy New Year!

Im gonna just get it out of the way and say on the morning of New Year's Eve, I found myself in the E.R....OK, it's not like I just woke up there, or was transported by aliens.....but I will say, it's almost embarassing, and I had to laugh, thinking my family just cant stay away from the darned hospital. Then I thought, it was the way to say, 'goodbye' before the New Year. So, while there, I said a prayer, that none of us would be back, at least for a year, we need a break!

Actually, it wasnt really a big deal. On Saturday morning, I started to feel, what I thought, was a tooth ache. I took some of Doug's darvocet from some old affliction, and it didnt work. By Sunday morning, my whole face hurt, and it seemed more like a sinus infection, but my sinuses were clear...not stuffy, so I was thinking I had a terrible tooth abcess, which had ignited half my face on fire. I couldnt sleep, or do anything, I was in incredible pain. Since darvacet didnt work on Saturday, I loaded up on Andrew's tylenol with codeine...but four of them didnt help! I also found some antibiotics, since it was clearly some sort of infection...and when I woke up Monday morning, the pain was unbearable, and I was now nauseaus from the antibiotics. So, after a morning of vomitting and intense pain, Doug convinced me to go to the ER, he and the kids dropped me off.

As it turns out, my teeth are fine (I did spend some time telling God I cant afford any dental bills)....so thankfully, it was just a sinus infection. They loaded me up with oxycontin, which only made me throw up more....but the sinus meds and antibiotics have helped TREMENDOUSLY, so, Im pretty much feeling fine now. WHEW!

For New Years Eve, Doug and the kids did our traditional countdown to 9pm (we let the kids watch the show from Times Square, so they see the countdown and are none the wiser).....they had poppers and sparklers and he got them REALLY FANCY HATS! Actually, the did stay up later, as they all slept in the family room for a "sleep over" and tried to stay up to watch Hannah Montanah and the Jonas Brothers (who were on the West Coast countdown)....Andrew got to see some, Christine, my Sleeping Beauty, couldnt wake up to see her crush (the Jonas Brothers)...

Another special thing that happened, is that Doug took Christine to the Disney Princesses on Ice on Sunday. One of his work clients invited them to go, and they had 4th row seats. Christine dressed up in her authentic Belle dress, with Princess tights, Belle shoes (yes. the plastic high heels), and the whole shebang! She had a fabulous time, and as she and Doug were leaving, some girls pointed at her and said, "look! she looks just like Belle!" well, that really made her feel so special, I was so thrilled she got to go, and will put up some pics this week.

If you want to read more about the kids' Christmas, and see pictures, Im blogging about it here

Tomorrow, I am hoping to get up and going and take the kids to see the Rose Parade floats. They keep them on display for a couple of days, and they look so amazingly gorgeous in real life, that I just want the kids to see how neat it is!

After that, we are back to the grind.

We are going to see Elise's doctor for her liver issue in the next couple of weeks....she feels fine, except for her pale diarrhea....which, honestly, after months of this, Im starting to lose perspective about what normal poop is. Doug and I, whomever changes her poopy diaper, always gives the other person a detailed description (or a look if we are both there)....because it's hard to tell if it is getting better or worse sometimes. Once we get her labs back, it will give us more insight.

But speaking of labs...I went to take her, made her fast (made the whole family fast, because, that wouldnt be fair to her)...go to the lab, and was told a bunch of reasons why they couldnt do her tests. I happen to know a lot about labs (since Andrew has been getting them for years, and still gets them regularly)....and shot down all their excuses, except for the fact that they didnt have the right equipment to do her "specialty labs"....SOOOOO, we will venture to a new lab this week, fasting and the whole deal....and see if we can conquer this task. Ill let you know when we do them, and when we will get results.

We have a bunch of upcoming appts for Andrew, which include:

Eyes: Im behind on this, but because the radiation was done to the backs of his eyes, he is at risk for cataracts and other issues, so we need to get them checked each year.

Dentist: behind on this one too. Because the chemo pretty much ate away his teeth, he needs to have them checked. Also, the radiation can stunt the growth of his teeth, so we need to make sure they are all coming in fine with healthy roots.

Heart: One of the chemos that Andrew took can cause very serious heart damage, damage that shows up after treatment. So, it's time for his heart work up to make sure that everything is fine.

Endocrinologist: It's time for this one...which covers a lot. First, we check his growth, including blood work to make sure his body is producing the right levels of growth hormone. He has grown nicely this past year, but this issue goes beyond height. Sometimes people say, "well, you have a small family." The truth is, Andrew was always in the 40th percentile, and then flat lined on the chart for 3 years. He is now growing back at the 40th percentile rate..which is good, (although his height is still below the 3 percent on the chart, because he didnt make up for lost growth)....but during the time that his body wasnt growing, it affected his bones and muscles and organs too. And while his body is producing hormones now, the meds are known to cause the hormonal system to poop out early, so many of the kids end up with thyroid or hormone issues, and we need to keep an eye on those.

This doctor is also the one that monitors his bones. Andrew has osteopenia (thinning of the bones) and he will check (as best they can, they dont have good testing for kids, it's all normed on the elderly)...so, they will check to see if his bones are making up for all that they lost, check for any issues related to this.

We also have been emailing back and forth this last week, as the weakness we have seen with Andrew on his bike, might be related to endocrine issues. Many survivors suffer from life long, chronic fatigue issues, weakness, etc. Andrew's neuropathy (nerve pain and muscle weakness) is a continued problem for him. I remind myself that he was on the toughest chemo regimine that they have, and then we added to it (because of his high risk features)..so, his little body has been through a lot, and I want to make sure that we are doing all we can to help to minimize these effects.

While we are more than grateful, every day, that we have him, it is still hard to see him struggle. To see him swim so much, and work so hard, and not be able to progress like the other kids....or to know that simple things like riding a bike or playing catch, or skipping rope, things he tries to do, are still so hard and frustrating for him. He has been through so much, and fought so hard, it's hard as a mom to see him still struggle and deal with the chronic pain.

Through it all, we know that God has done tremendous miracles in his life, and we dont forget that He has brought Andrew through, and we are lucky to have our son.

Please pray for Christian's family as they have just returned home from the hospital, without their boy. Christian and Andrew went to the same school, although Christian is much older, he would have been in high school now. He was an honor roll student, and a strong Christian boy, who held on to his faith in Jesus throughout his terrible illness. His family had to say "goodbye" to him, just a few days after Christmas. I cant imagine not having my son here with me, and my heart breaks each time we lose a friend to this disease.

As most of you know by now, if you read my rants on the topic of childhood cancers.....often with kids, as in the case with Christian, it wasnt the cancer that killed him, but the harsh side effects of treatment. Kids get more chemo, at higher doses, for longer periods of time....because they get less research than adult cancers, and they really dont know how to treat them effectively. So, that is why most kids are on experimental trials, and have horrendous side effects...which often cause life threatenting issues. I still remember the meeting with the doctors, where they had to tell us all the side effects, in order for us to sign consent for treatment. After 2 hours of hearing about heart damage and kidney failure and brain damage, and secondary cancers, I walked out of the meeting...it was too overwhelming to think of the options, when the truth is, there is no option but to forge ahead and pray for God's healing and protection. So, our family continues with our efforts to bring awareness and raise funds for pediatric cancers.....and we ask all of you to please pray...pray for the kids, pray for the families....and for now, please pray for The Barker Family, as this joyous season is filled with heartbreak for them.

love,
Kim




Click here to go back to the main page.

Click here to view older journal entries.

Donate |  How To Help |  Partnerships |  Contact Us |  Help  |  Terms of Use  |  Privacy Policy

Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved.