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Thursday, February 1, 2007 3:23 PM CST
Life has definitely changed around here…
I used to dread nighttime. Dinner-time was chocked full of angst about what Tank would eat, IF he would eat, and would he keep it down. Julia was around more because school was out for the day. I always worried about how to keep some sense of normality in the house-the house that wasn’t normal. I tried in vain mostly to shield Julia not only from MY greatest fears, but also some of the realities and possibilities of Nolan’s illness. It was the time of day that lost its routines of eating, playing, reading books and dancing.
I was always at my lowest in the evening as I was usually filled with distress and lack of sleep. It was the time of day that followed constant monitoring of food intake, temperature, prescription medicines, side-effects, tumor re-growth, hair-loss, doctor’s appointments and the non-stop search for calories to give Nolan. The phone rang more, I yelled more AND cried more. Evening offered up magnification of differences in coping that Jason and I had, often leading to increased disagreements. Jason and I had many nights of going to bed without resolution of earlier conflicts. I rarely slept without repetitive, horrifying nightmares. Nighttime was the time of day that I worried most that my, then, very sick, little boy would just stop breathing.
Now, the night is filled with loud voices, usually Nolan yelling at his sister for not sharing or not wanting to play. Besides the ocassional vegetable protest, dinner time is chocked full of eating, talking and laughing. The only negotiations taking place are those that determine how much dinner must be eaten in order to partake in dessert.
Nolan’s favorite song these days is “We are family” by Sister Sledge (?). He’s a riot singing and dancing around the house. He’s very expressive (i.e. dramatic) when it comes to dance. He takes large, broad steps, makes huge circles with his arms until he gently raps into a wall or piece of furniture where he so easily makes the “crash” appear choreographed. It is true that he has really spent the last three years, overcoming so much so gracefully. Just as his sister stood by him when he was so sick, you often find him advocating for her now when he feels she isn’t being treated fairly (i.e. “Mommy, my chip is bigger can Yaya have more?”
Gone are the worries about Nolan dying in his sleep. Instead, worries about whether he will go to sleep without a fight AND sleep in his own bed through the night have taken over. We all sleep much more soundly now. I often hear Nolan talking and laughing in his sleep.
Normality has re-entered our lives. The past 4 or so months, I have really begun to feel “normal” again. Much of what we went through is a distant memory and what isn’t distant, I find myself distancing myself purposely. (I won’t go into my own psychology. It would take a year).
Every once in a while, those old feelings and fears come creeping back in. However, I’m thrilled to see both of my children healthy and happy, doing things all kids their ages should be doing.
Although, I could do without the dog food stuffed in my electric sockets and the midnight Samarai snacks made on my kitchen floor…
I have begun to feel some peace again and want my children to know how much I love them.
Much Love,
Courtney
Friday, December 15, 2006 3:48 PM CST
Hi all! Well, intial results are NED!!! YIPPEE!!!
It was a visit with a terrific outcome, but a difficult visit because Nolan's veins wouldn't cooperate today. He had to get stuck quite a few times to get his line in. He was NOT happy to say the least. He kept screaming "I wanna do it!" Of course, the staff couldn't allow him to place his line! YIKES.
On the other hand, the visit wasn't without some humor too. Nolan discovered that doctor's tables have "stirrups" and he asked what they are. Well, after a verrrryy pregnant pause (no pun intended here), the three adults in the room chose 3 different responses. Male Nurse: "I've never seen those before. I don't know what they are". Jason: "I don't know. Mom? What are they?"
Mom: "those are stirrups so that the doctor can look at someone's 'tooshy' if he needs too." Well, THAT response seemed to more than just satisfy Tank. He loudly said "COOL" and proceeded to separate the stirrups as far apart as he could get them. He closely inspected the mechanics and then moved on. I love that kid.
I don't want to sign off without mentioning Yaya. Jason and I bought her a bouquet of flowers after leaving the hospital today. Although it has been TWO years from diagnosis, she still gets pretty nervous at scans. She funnels her anxiety into pampering her brother the night before and morning of though and was extraordinarily sweet to him this morning. It truly brings tears to our eyes to see her being so kind and supportive. We love that kid too.
Anyway, enough for now. Scans again in 3 months!
Love to all of you and much, much happiness through the holidays!
Courtney
Tuesday, December 12, 2006 7:49 AM CST
Nooooo, the pictures aren't from Ohio! We returned last week from a much needed vacation to Naples. We had a ball and it was our first vacation that was not touched by Wilm's since Nolan's diagnosis.
We did nothing but play, read, sleep, eat and laugh. It was great. We got to spend Thanksgiving with Grandpa Roger, Rachel and Gail whom we haven't seen in a long time. It was very quiet and filled with delicious food!
Nolan has grown so much that he constantly walks around looking as if he's ready for a flood at any moment. His language skills have improved tremendously and we are having far less difficulty understanding him. It seems his language skills were the very last remaining after effects of Wilm's. I love that he doesn't get as frustrated trying to tell us things now and that his self esteem seems to be improving. A lot of his language improvements I credit to preschool,his teacher Mrs. Schwab, and all of his new friends he met there.
At first, he hated going to preschool. He threw the kind of temper tantrums that I was convinced someone would call the police thinking that I was abusing the poor kid. We always got him to go though and to be truthful, I was the one with the bruises. He's one tough kid I tell you. Now, he loves going and we haven't been having any problems at all.
This week is the anniversary of his diagnosis and I'm pleased to say that the residual psychological effects are diminishing by the day. That's not to say that as we near scans on Friday, I don't have a little bit of angst, but I am nightmare free and not reading into every little ache and pain that Nolan has. I believe that the love and support of my family and friends is what has helped all of our recoveries from this process. Julia, too, has connected this time of year to when Nolan was diagnosed with cancer. However, instead of nightmares, she now writes about it in school work and brings it up with Jason and I. She is truly unbelievably resilient and talented.
We are truly blessed to have the kids we do.
Anyway, enough mush-mush.
Love to all of you and
HAPPY HOLIDAYS!!!
Courtney
Saturday, September 9, 2006 9:33 AM CDT
Today was Tank's ultrasound. He got the all clear on the ultrasound. No Evidence of Disease (NED)!! The technician just kept saying over and over, "everything looks really good". As usual, Tank layed perfectly still and quiet so that she was able to get beautiful pictures. NED, NED, NED. YAHOO!!!
Regarding his kidney and the protein spillage...
Apparently, Tank has had a high test result before. Protein in the urine is supposed to be less than 0. His has tested at 30. When we asked our NP, Holly, what could be causing this and should we be concerned, she responded by saying she's "not sure" because she really doesn't see this in test results. SO, in my most positive and kind way, I encouraged her strongly to find out more about what is going on. Late in the day yesterday she called. Tank's urine showed 0 protein yesterday and after conferring with the docs, they believe he has a benign syndrome called something I cannot even begin to pronounce. In essence, they believe that every once in a while his kidney is not working well enough to manage the protein. She said that some people (hx of cancer and no hx of cancer) just have this syndrome. Ultimately, we will just continue to monitor and if Tank's kidney should develop a pattern, the level of concern for kidney failure will increase.
So many of you have been waiting to hear about the tests, I figure I better update. Sorry it took me so long.
I love all of you who have been saying prayers.
Nanette, I miss you terribly.
Jill, you too.
And, to my list-serve folks, you all are tremendous and I cannot thank you all enough for your continued support, encouragement and attempts to keep my feet firmly planted on the ground!
Love- Courtney
Thursday, August 31, 2006 7:58 AM CDT
Hi all! It's been a while because we've been so darn busy being healthy and happy!
We've all enjoyed the summer so, so much. This was the first summer since Nolan was born that he could really run and play and feel good. He's had a ball. He's played outside every chance he's had. He's learned to ride a tricycle and a big wheel. He's learned how exactly to position his body on a "slip and slide" for optimal speed. He's swam and built sand-castles. He's climbed some trees, played make believe, taken hikes and walks, played tag, and learned how to turn the hose on to just the right amount so that he can spray his sister without losing a drop. He's discovered if you find a bug, no matter how big or small, you cannot step on it without killing it and that if you keep it in a jar too long, it will die. He's learned that fireflies aren't easy to catch, but if you persist, you'll succeed. He's learned that "smores" are the best dessert ever and that if you take the graham crackers off quickly, that the marshmallows make wonderful glue for Yaya's hair. All-in-all, he's had a blast. It has been a wonderful summer.
We took a mini-vacation to King's Island with some very good friends of ours. That's Abbie in the above picture with Nolan. We loved King's Island and hope to go back some day. One small, Tank story related to King's Island:
Nolan won a stuffed puppy on a leash at one of the games there. The leash was the kind that was mostly stiff so that it looked like you are really walking the dog. On one end, the leash is limp, but the other is hard for this purpose. Anyway, of course, Nolan figured out how to take the dog of the leash and in true Tank fashion, went straight to work trying to figure out what other uses it had. Well, one morning, I was in the kitchen doing dishes. Julia was showering and Tank was being creative with the dog leash. All of a sudden, I heard Yaya screaming for me at the top of her lungs. I ran down the hallway only to discover, Tank's newest use for the dog leash.
Picture this...there is a small hall leading to the bathroom. On the south wall, the door to the bath. On the West wall, the door to the basement. Nolan had wrapped the leash around both door knobs. Because the leash is mostly stiff with only flimsy ends, he was able to trap Yaya in the bathroom. When she tried to open the bathroom door, she was, at the same time, pulling the basement door open, therefore, closing her into to the bathroom. She was totally trapped! I tell you what, Tank is very creative and bright when it comes to tormenting Yaya, but Yaya is going to grow up being "Houdini-esque" because she'll be able to escape from just about anything!
Nolan has physically been doing fairly well. A couple of weeks ago at his routine physical, one of his urine tests came back high in protein. The nurse told Jason it's neither a good thing or a bad thing (whatever that means). Don't do what I did and go on the internet to find out possible meanings. I scared the crap out of myself. In the
end, it could mean various things. The most important thing is that we're going back a little early for a doc visit to recheck the protein levels. Tank will also have an ultrasound that day. So, we're asking for prayers for good test results on Sept. 8th. Appointments begin at 9:30am.
Love to all of you
Court
Monday, July 24, 2006 3:07 PM CDT
As you can see, Tank had a ton of fun over the past month. On the 4th of July, we had a parade with a carnival theme during which he was the strongest boy in the world. We thought it was very fitting. We all had an absolute ball!
Tank and Yaya have been doing so well and very much enjoying their summer. It's been full of tennis lessons, swimming, gymnastics and just tons of playing around. Julia has gotten quite good at tennis and even won the "lobby challenge" last week earning the highest amounts of consequetive ball lobbies at #19!!! She feels really confident playing tennis and her coach, Walt, is fantastic!
Tank has been taking gymnastics. I thought this might help build his stomach muscles and that he would enjoy it. He loves it and is always asking to go on the days he doesn't have lessons.
Tank is also potty trained (Thank G**!!) He only wears a diaper at bedtime now and NEVER asks to wear them any other time. He's had a few accidents, but overall has done terrific. He's like his sister. When he puts his mind to something, he does it both barrels blazing! Unfortunately, he has developed an afinity for peeing on the backyard grass. I know it probably feels so great to be without close in the great outdoors, I just hope he build some ability to discrimate when it's a good time and when it's not!
Jason had bacterial pneumonia last week. He was sick as a dog. High fever (102-104.3) for 4 days w/o relief. He lost 8 pounds. He is now feeling MUCH better and returned to work after a week. That was a very scary ordeal. I just thinking to myself, what if he doesn't get better? What if it's NOT pneumonia. In the end, he's fine and I'm thrilled. I love him very much.
Soon, we will be going to King's Island for a mini-vacation with some good friends of ours. We are all looking forward to it and praying that it goes better than our last mini vacation.
Thanks to those of you who still check in. We love to hear that prayers continue for our Tank and our family.
Love to all of you,
Courtney
Tuesday, June 6, 2006 6:16 PM CDT
Today was scan day and Tank rolled right on out of there with the all clear! Jason, Julia and I are all so relieved.
The day is so intense, stressful and long (not to mention the days leading up to it). We started out at 7:20am, got to the Clinic at 8:20 (late, oops), and didn't leave until 1pm. Of course, I wouldn't have it done any other way in that the professionals there are so totally thorough. I appreciate that they take their time and do it right. Tank started with CT prep which included a IV placement. Then we had to cajolle him into drinking all the fluid we could get into him. The other folks in the peds waiting room were not too impressed with our burping contest approach, but hey...you gotta do what works! Then he had a CT with and w/o contrast. Next it was on to Echo. The waiting room was literally overflowing into the hallway, but it wasn't too, too horrible (with the exception of the mother who was entertaining her 2yo by teaching him to punch her repeatedly). Burping or hitting. I'll take burping. Then it was off to HemOnc for blood, urine and physical exam.
The report is as follows:
CT showed some fatty tissue protruding through his diaghram. Apparently, it wasn't there 3/05, was there 12/05 and has increased in size. CANNOT even begin to imagine what hurdles this could present in the future, but today the doctor's didn't seem one bit worried so neither are we. No indications at all of any tumors, etc.
Echo actually showed that Nolan's IVC was less bent than last time. This is good news. Obstruction was zero. Miracles!!!
Physical, etc. went well too. Weight is up to 32.5, bowel issues have resolved with the miralax and, at our request, Nolan willingly gave us a urine sample. YES!!! HE WENT PEE PEE in the cup!!!
As we were driving away from the clinic today, Nolan in the back seat enjoying one of the varying suckers he procured today, I said to Jason: "See? It is ok to be hopeful and confident again". He just squeezed my hand really tightly and said "we can".
Love to all of you who continue to include Tank in your prayers and who keep tabs on all of us!
Courtney
Wednesday, May 10, 2006 2:04 PM CDT
Let's see...haven't updated in a while and we've been BUSY!
Nolan had his 3rd birthday!!! We really had a nice time at his party and he thoroughly enjoyed it. The next day he asked for a "new party". I think that was his way of asking for MORE because he had so much fun.
He's really doing quite well. He's talking more clearly every day, playing much more and just really enjoying being 3. The other day, early evening, he looked up into the sky and saw the moon. He ran to me, pointed in the air and yelled excitedly, "look Mommy! Moon!" I looked up and confirmed that, in fact, it was the moon. He replied "me go there now!" I assured him someday he could go to the moon, however added that he had to learn to go "pee-pee potty" first. It was great to be able to tell him that someday he will have the option of going to the moon should he want to. It was JUST GREAT. However, I think there's some learning about the moon to do first because his next comment was that the Moon's "lights [are] on". Soooo cute.
Medically speaking, Tank is doing pretty darn good. He continued to complain of his belly hurting daily, so when Jason took him to the see Dr. Levien last week, they did an xray. What that showed was a very large amount of stool basically all the way up as high as it could go. The long and short of it was that his bowels just aren't doing what they're supposed to so they gave him Miralax. He is to take it daily and it is, for sure, helping. There's no true understanding why he's so backed up, he just is. All I know is that since he started taking the medicine, the belly complaints are very few and very far between. He'll have CT and another CXR on 6/6 as well as an echo so if there's anything more to be concerned about we'll surely find out then. I'm totally confident though that he is cancer free simply based on the fact that everything from behavior to eating to playing to developmental milestones are right on track. I've never been so calm about relapse before and I just read a pretty scary article about Wilm's relapse so that's really saying something!
I will try to update again soon, but Yaya should be getting home any minute to do homework, chores, eat dinner and go to gymnastics so I need to skedaddle!
As Aunt Jody would say,
Ciao!
Courtney
Monday, April 17, 2006 12:13 AM CDT
Not too, too much to report here.
Nolan was pretty darn sick last week with what we now believe to have been a virus. HOWEVER, it was pretty stressful considering the other options. By the time we took him to the doctor, we were pretty scared. He had lost 2.5 lbs. and looked like crap. But of course, at the doctor's appointment he was acting like his normal self and beginning to feel better. As of today, he's eating much better and his mood has improved tremendously (thank goodness becuase Jason and I were ready to run away from home). Nolan has a hemonc appointment next Tuesday (25th?) and I'm hoping his weight is back up by then. Scans and echo are June 6th I think. After that, just one more round and then we get his scans bumped out to every six months.
Jason and I have signed him up for "summer camp" in our neighborhood. He's really looking forward to it and so are we. It will be great to get him socialized again and back into the swing of things. Julia, too, will be going to various summer camps. We're beginning the planning now. She's also starting gymnastics next week- something she's been asking to do for some time now.
Easter/Passover was great. Jason was off all weekend and so we got a lot of time together in the GORGEOUS weather we've been having. We spent Easter at Nana and Poppy's and ate waaaayy too much and laughed a ton. We did miss a couple of people though, Denise, Jody, Dalmatzio.
Well, that's it for now.
Love to all of you.
Courtney
Thursday, March 30, 2006 12:43 AM CST
I haven't updated in a while and feel like I need to. First, I'll start with the good stuff!
As you can see in the new photos both Tank and Yaya have been busy! Yaya is just zooming through the second grade. Her grades are fabulous and the only comment she got on her report card is that she is too "chatty". Imagine THAT! She was recently chosen, again, as one of her school's "Star Spangled Banner" singers. Don't know where she gets her singing voice really. I'd be the last person chosen to wake up a school of 7 and 8 year olds by singing. The school would have to call in disaster response due to all the kids trying to force their way out the doors and away from the sound. And G** knows she didn't get it from her father. Although he thinks he sounds JUST like Billy Joel. All I have to say is, notsomuch!
Now, Nolan. He's up to his usual antics. I have never seen a child as independent and stubborn. Honestly, I can't even take a shower. I'm trying to figure a child friendly, humane, bungee chording technique that can attach him to something, anything while I take a shower, brush my teeth, etc. (Really. I'm kidding here.)I love him so much and everyday I remind myself that we're lucky every single day he's here. Everyday. HOWEVER...take a look at the photo page and his latest cooking adventure. He's apparently not noticed that when we cook, we have it in some kind of vessel like a bowl or pot. NOT HIM. He thinks he can do better by taking every single condiment out of the fridge and mixing it together on our family room table. Honestly, I'm pretty sure he stays up all night thinking about what he's going to do and when. You can see the amount of jars on that table. He had to have been RUNNING to get those out of the fridge before his dad got out of the shower. Stinker. By the way, he's picked up the term "oh **it" and loves to use it repeatedly. Particularly in public. The pride is practically all consuming some times.
Like today. I took him to the park to feed ducks (which apparently is a bad thing I learned from the park ranger-oops). He was having a blast throwing the small pieces of bread directly into the ground while his mother fooled him to believe he was actually making it into the water because at the same time he would throw, so would I. Anyway, his favorite part? Not the quacking. Not the beauty. Not the joy at seeing the ducks' excitement. The best part for him was when the ducks would stick their heads under the water to retrieve the bread with their rear-end in the air. I know it was his favorite because he would squeel with joy, point at the ducks' rears, yell "BUTT" really loudly and then belly laugh. Pride I tell you.
Anyway, without going into a total rant, Tank keeps complaining of that belly pain. His complaints are becoming more regular and loud. I took him to the park today and he laid down on the concrete path because it hurt. Scans two weeks ago showed nothing. I just worry. I feel helpless and useless sometimes. I just wish I knew for sure what it was...gas, stretching on his incision site, bowels moving, behavioral. It really stinks (figuratively speaking) not knowing what's happening for your child on an on-going basis. Not being able to help. Cancer sucks.
Everyday, I pray for the other cancer warriors out there. I follow so many of them via caringbridge.
Love to all of our family, friends and quietly praying supporters!
Courtney
Wednesday, March 15, 2006 1:14 PM CST
Well, we had scans yesterday. ALL CLEAR!
He did wonderfully, as usual. I am so impressed by his courage. Everyday. He laid still as could be for the ultrasound. Even the tech commented on how cooperative he is. Can you hear the pride?
His blood levels were decent, although his platelettes are up. Not sure what that means, but no one seems concerned by it so I'm trying not to be.
Tank did lose some weight though. I know, I know. ALL kids lose weight. I know. I'm still nervous without really having anything to support it. We have worked so incredibly hard to get him back into tip-top shape and to take any kind of step back worries and frustrates me. Our NP said if he drops more next visit, they'll start being concerned. For now, we were told not to worry. YEAH RIGHT (make sure that you "hear" the sarcasm in my voice when reading this).
Good news, he doesn't have to go back for 6 weeks! This also makes me nervous, but I am capable of seeing the positive in it. Bad news, 3 month scans have to continue a little longer than we were told initially (15 mos. instead of 12 mos.). The Wilm's protocols have changed as research indicates highest rate of relapse is within 15 months. Therefore, the change.
Thanks to all of you who continue to pray and journal. You cannot imagine how much we truly appreciate it.
I'll update in a couple of weeks.
Love to all of you.
Courtney
Thursday, March 2, 2006 9:11 AM CST
Life has been moving in a positive direction here.
Nolan has seemingly been feeling well. Last week Jason and I were a little worried because we felt a lump in his side. It seems gone now though and I'm feeling relieved. Still in OCD mode, constantly pushing on his belly when he lets me, but no sign of anything.
He's eating well, playing well and learning well. He seems somewhat attached to "time-out", in that he can't go a day without a visit. I wouldn't be surprised if he grows up bieng a person who makes those little squares of carpet most people use to wipe their feet on as that's his time-out spot.
Nolan got to play outside a little bit this week which seems to have alleviated some of his cabin fever. I love watching him try new things and playing. HOWEVER, a word to the wise, when first teaching a two year old how to sled, it's not the best idea to do it when the snow is so fast that your child ends up with evergreens sticking out of their hair and such. Makes for a good laugh, but not for encouraging him to trust you or the sled!
He continues to like to "cook" and the other day surprised all of us with a wonderful mixture of Fruit Loops, Cheerios and Shredded Wheat in the middle of the kitchen floor. Good news...there was just the right amount of MILK mixed in!
As we approach this next round of scans, I am feeling less stressed and crazy. Although still nervous, the experiences Nolan went through feel so distant. Sometimes it's like they never happened. That feeling of distance is comforting and frightening because a part of me NEVER wants to forget or even let my guard down. The pain Jason and I felt during those months was so intense that if I keep my guard up a little, irrationally I believe it won't hurt as much if (IF) it ever happens again. The process we have gone through has been extraordinary in both good and bad ways.
Yaya is doing great. Although she's home from school today because she's not feeling well, she is just growing like a weed and learning so much. I'm astonished at what they learn in second grade. She's learning cursive, doing a book report and time line on JFK, and beginning Economics. Last week she had an economics test and got 100%. It was a lengthy test and included questions like "In your own words, describe the difference between barter and trade". Seriously, I don't think I learned anything like that until 6th grade. She's amazing and was soooo proud of her 100%. The night before she was putting up a fight about studying, but when she came home with that grade she was incredibly excited and proud. She's just beginning to "get" the point of studying to learn. It's really cool to watch her grow.
Anyway, scans in a couple of weeks. I still ask for prayers for Nolan. I ask for prayers for other little ones out there struggling every day with this disease and for the researchers who are working endlessly to try to cure childhood cancers.
I miss so many of you who supported us last year. Even though we don't talk or see eachother as often, I love all of you.
Courtney
Monday, February 6, 2006 5:16 PM CST
Has it been a long time or what? I've been getting a lot of phone calls and e-mails wondering how Nolan is so I thought I should definately post.
All in all, I'm beginning to forget how sick he was last year at this time. Truly, he's putting on so much weight, causing his face to fill out. His hair is completely filled in. He eats like a champ. He hasn't had any major illnesses other than the occasional cold (of course colored by a neurotic mother's view of it- plague, etc.)
He's learning his numbers, we're up to "1, 2, 3, 8, 9, 4!" Problem is that whether there are actually 2 or 8 things, he always counts the same way! It is pretty cute. He is really becoming quite a character as well. I mean, he's always been a character, now he's just working on the facial expressions to go with it. I wonder sometimes if he's going to grow up to be Jim Carrey or somebody like it because of all the ways he can contort his face.
Nolan has his monthly check up this week, but I'm not really worried about anything. We're even coming up to scans (I think) and I'm not having nightmares or the fears that usually begin about now. On the other hand, the child, I'm sure, feels like somekind giant pile of pizza dough or something because every chance I get I'm pushing on his stomach the same way you do when you're making dough. I don't care if he does grow up to want to be the Pillsbury Dough Boy.
It's strange how time changes so many things. Obviously, it hasn't changed my tendency to be wordy. I'll update again soon I promise!
Love to all of you.
Courtney
Monday, January 2, 2006 3:23 PM CST
As you can see from the above, this Christmas and Hanukkah were faaaarrrr better than last year. It really wasn't a hard act to beat and we had WONDERFUL holidays. Everyone was in good health (minus a few sniffles).
Tank and Yaya got to see Santa and enjoyed opening their gifts. But of all the things this season, the focus was on spending time with family, laughing and playing. Many of the memories of last year were put aside and we were filled with happiness. It is such a relief to know that we can do that.
There was so much going on, that it just seems too much to write. Many funny stories (NOT including my aunt's journal entry thank you very much) and too many to recount.
Both kids got to spend some extra, one-on-one time with Godmommy Denise who is in from San Fran for three weeks. This was so special for both of them. We love you Denise and wish you lived closer (no pressure).
I got to talk with many people who have were so totally supportive this year. I cannot thank all of you enough.
Nolan has a routine appointment next week. We're not expecting anything concerning (although that doesn't mean we're totally fear free). He's been doing pretty darn good though.
I'll update more in a couple of days. Until then,
love to all of you.
Courtney
Wednesday, December 14, 2005 4:54 PM CST
Well, a year ago today, Tank was just out of surgery after having his kidney amongst other things removed from his body. And Today, six months OT, he has CLEAR Scans!!!!
Jason and I are so grateful. We cannot wait for Christmas and Hanukkah and to see Nolan and Julia open presents with the kind of joy all kids should have.
Today, I am relieved of stress and fear of cancer.
Thank you to all of my friends (old and new) who continue to say prayers for our little Tank. I'm telling you, they are working!
Love to all of you.
Courtney
Monday, December 12, 2005 11:14 AM CST
A brief update...
Tank has been fighting first a cold/flu and now a stomach flu. It's been a taxing couple of weeks. We finally gave in and took him to the doctor. They did cxr to rule out another obstruction (at Jason's insistance), but they ruled it out and called it the flu.
Anyway, Jason now has it and we are all exhausted.
Enough, belly aching. We will post again after CAT scans on Wednesday. I'm feeling less concerned than in the past, probably because we had the cxr on Friday and I would assume we would see something if there was something to see. Still a little nervous, but feeling pretty positive.
Please say a prayer for a caring bridge warrior who began her treatment last year as well. Her name is Brooke. She left to be with angels on Friday and I am just so sad.
www.caringbridge.org/ne/brooke
Love to all of you.
Courtney
Wednesday, December 7, 2005 3:47 PM CST
Hi, all. Sorry for the delay in update. Things around here have been crazy busy. A very brief update...
Nolan is doing better. No more complaints of stomach pain and as of Sunday he is eating MUCH better. I am relieved and now believe (mostly) that it was the flu we were dealing with and nothing more.
I'm sure that next Wednesday I will feel even better after the CAT scan and we can celebrate Christmas and Hannukah in a much better fashion this year. I am really looking forward to everyone being healthy this year. It's Tank's first Christmas that I think he'll actually have an idea of what's going on. I can't wait.
Sadly, Yaya asked me today For the first time if Santa is real. She heard in school that he isn't. I thought about what to say and I remembered last Christmas. It was filled with the Spirit of Christmas. So many people gave so many things to our family in so many ways. People we had never even met. Those people gave us so much hope and really sustained us. I will never forget. The Spirit of Christmas IS Santa so I told Yaya that Santa is definately real.
We are really looking forward to these holidays.
Love to all of you.
Courtney
Wednesday, November 30, 2005 6:40 PM CST
A quick update following yesterday's events:
Tank seems to be a little better today. No fever and more energy. He is a CRANKY little devil because he didn't want to nap today (takes after Poppie). He didn't eat breakfast, ate a good lunch and a little bit of dinner. He only complained of belly pain once, but didn't seem in pain like last night.
Jason says it's the flu and I'm almost sure he's right. However, if Tank continues to complain of belly pain, I'm sure I am going to become a raving lunatic. For now, still on the side of reason and hanging on to the ledge.
Jill, as usual, thanks for your words of wisdom and for being such a calming influence.
Love to all of you.
Courtney
Tuesday, November 29, 2005 5:20 PM CST
Today was a concerning day. Of course, anyone who reads this must remember that I can get really scared sometimes and easily have "brain detour" when it comes to Tank's health. With that in mind, here's what's going on...
Night before last, Nolan complained of his "bewwy" (Belly for the rest of the world) hurting. It was a fleeting complaint and Jason and I both felt his stomach and found nothing concerning. Tank was a bit lethargic yesterday, but went to daycare and had a good day. This morning, he woke up normal and fine. We played and he ate. He took his nap and woke up in a horrible mood and he felt warm. Temp at that time was 99.5. He usually runs in the 97's. Ok. It's a fever. EVERY kid gets fevers and he had just woken up. So, I decided to wait a little to see if his temp was up a little because of his nap. About 20 minutes later he said, "mommy, boo-boo" and pointed to his belly (just below his rib cage in the middle of his stomach). I took his temperature again and now it was 101.5. The freak out was building...
I decided that a bath always makes him feel better, so into the tub he went. He was enjoying it for a good 20 minutes or so and I could feel myself starting to relax a little. (Of course, the self-talk going on would have made your head spin though.) Then, SHREEKS!!! He was doing the freaking out saying "boo, boo, ouch, ouch". I took him out of the tub and he continued to scream. At some point he started saying "doctor" and I'm not sure how that even started. I lay him on his diaper table to warm him and get him dressed and attempted to feel his belly. He screeched and hit my hand away and said "No Mommy! BOO BOO!"
Self-talk sounded something like: "oh **it. Stay calm. Oh **it. Stay calm." Over and over again. And my brain completely disappeared. Jill called at this exact moment and I lost it. I'm better now.
Anyway, he just wanted to lay on the couch. He stayed there for about 40 minutes when I did get him to come to the table. He didn't eat, but got a burst of energy and was running around the house (thanks to the Tylenol I guess).
I'm writing this because? Who knows. It feels good to put it somewhere. It's a stomach virus, the flu, an ear infection, cancer. Who knows??? When will I ever stop worrying that the cancer has returned. When? I hate this. I hate this. I hate this.
Big detour from my more humorous entries. I simply hope Nolan is just constipated. Never wanted constipation so much in my life...
I'll keep you posted.
Love to all of you.
Courtney
Thursday, November 24, 2005 12:21 AM CST
HAPPY THANKSGIVING!!!
Today I am so thankful for so many things, words cannot honestly begin to express. We are thankful that Nolan has done so well since December. We are thankful that Julia has weathered these past 11 months so well and is doing so well in school, has lots of good friends and is beginning to explore who she is independent of us. We love seeing her grow and look forward to Nolan having the chance to do the same.
Tomorrow, we will have a new addition to our family because my sister-in-law and the kids' aunt is going to have a new baby girl. We are excited to be ending the year with new life filling it. A much different ending than last year.
We wish all of our family can be together, but we are thankful to know that they are all having gatherings where they all live and that each of them are healthy.
One last word about being Thankful. I'm sure if she could, our dog, Cookie, would be expressing her thankfulness. She had a wonderful morning Thanksgiving celebration ala Tank.
Tank was thoughtful enough, on this day of giving, to open our refrigerator to Cookie and serve her up a wonderful dinner of an entire bowl of left over fettucine, 3 sticks of butter, and to round out the meal, an entire cheesecake. Cookie, I'm sure, is thankful too. (Me? Notsomuch. My floors are getting cleaned nicely though as I follow Cookie around the house!)
Today is a good day. A day that not even Cookie's Thanksgiving leftovers, Yaya's pink-eye or being on the phone with the nurse-on-call for 45 minutes or an early winter blizzard can ruin.
If I haven't said it enough, Nana, Poppie, Grandma Sandi, Grandpa Roger, Aunt Donna, Aunt Kathleen, Uncle Dave, Uncle Kenny...we are so thankful to all of you for your love and support over the past 11 months. We love you all.
Jill, you continue to hang in there with me. I am so grateful for you.
Denise, I'm terribly thankful that you made it in from San Fran and that we have had some time together.
Thanks to all of you, too many to mention, who we continue to depend on and who have brought so much into our lives.
Love to all of you-
Courtney
Friday, November 18, 2005 2:10 PM CST
Well, we all got through Thursday. It seemed a very long day though. Ok. On to the important info...
Echo showed no change in the vessel in his heart and blood flow is still good. PHEW! Tank put on about 2lbs in the past month and is almost 30 lbs now! I can hardly believe it, but I guess all that time sitting in front of the fridge getting him to eat is paying off. His blood work and physical exams continue to be good. His UA did come back with increased white blood cells. The lab thinks is was contaminated, so I guess we'll see when we do it this time.
Next we have a CT. December 14th. The anniversary of Nolan's first surgery. Yikes. I'm not sure why a CT instead of the CXR and ultrasound, but Jason or I will be calling about that next week. Just a couple of months ago, they told us no CT's unless indicated so that we could reduce exposure. Now they've ordered a CT. If it's not one inconsistency it's another. We'll figure it out though.
Anyway, I have to get going. Yaya has her acting debut tonight in a play called "How To Eat Like A Child and Other Ways Not To Be a Grown Up". I'm hoping I learn something from it...
Love to all of you who called to check in on Nolan yesterday and to those of you who continue to keep Tank in your thoughts and prayers.
Courtney
Tuesday, November 15, 2005 5:56 PM CST
I'm keeping it short tonight because Nolan is standing next to me doing his best to distract me from doing anything other than playing with him.
So, with that said, if anyone out there is reading this, please say a prayer for Nolan's Thursday visit. He'll be having the usual monthly check-up, blood work, urine analysis, etc. He'll also be having his heart checked again for anymore structural changes resulting in increased blockage. (For those new to Nolan's sight, he has echocardiograms because chemo can damage his heart. At last echo, they found some "candycane" hook in one of his main vessels, possibly caused by scar tissue and resulting in minor blockage.) I won't mention what more blockage would mean because I'm sure he's fine, but it's worth a few prayers just in case.
We'll post again on Thursday or Friday. In the meantime, I'll try not to totally freak out. Although, a good freak out might feel better than feeling like I'm always walking on pins and needles. Something to ponder....
In the meantime, love to all of you!
Courtney
Monday, October 24, 2005 6:58 PM CDT
Hi, everyone! Clinic update…
Nolan has put on two pounds and his blood work was good. The pulmonary specialist does not believe the cysts on his lungs have ANYTHING to do with the cancer. I was tremendously relieved to know the specialist had taken a gander. Next month, Nolan will have his echocardiogram to monitor the heart vessel bend/blockage. Then,in December, more tests- CXR and Ultrasound. I feel the anxiety building already and you all know how I deal with anxiety, so for some recent Tank shenanigans read on…
As you can tell, it was kitchen safety week (if you don’t know why read the last journal entry) at the Taft home last week. Doesn’t he look adorable with those big hot mits on his hands? A WOLF in sheep’s clothing I tell you! A WOLF!!! (We should have considered a wolf for his Halloween costume. Either that or a fire fighter.) Nolan has learned a lot this week and has shifted his attention from the toaster oven to the microwave. Safer right? notsomuch. A couple nights ago, Jason was home with him and heard the microwave going so he ran top speed to see what Nolan was up to. (Insert sarcasm in this sentence as you read). Poor Tank must of gotten hungry. He decided to take out the entire new package of hot dogs, bite off each end (I guess making sure they were “serveable”) and proceeded to place the whole package in the micro and turn it on. Good news is, he removed the metal cherry pie tin BEFORE cooking the dogs. HE REALLY IS SMART!!!!
Jason and I thought that Yaya really needed some peace of mind when she goes to school. Insomuch that when she gets home, she doesn’t have to brace for total and complete room destruction. So, we bought those door covers that prevent small kids from turning the knob. You know the kind that you have to squeeze the cover in order to turn the knob. Anyway, Tank has discovered that if you hangs on the handle with his full body weight, in just the right angle, he can turn the knob and open the door. Yaya now has to ask her brother to open her door. I just cannot get myself to take the thing off though.
By the way, Yaya news. She has her acting debut coming up on 11/17 and 11/18 as Christie in a play called “How to Eat Like A Child, and Other Lessons In Not Being A Grown Up”. Anyone who is interested in attending can call me or Fairmount Center For The Performing Arts.
Finally, Tank believes that if he puts his “night-night” (his favorite blankie) over his head that he is invisible. The other night, I put him to bed. 30 minutes later, I see him coming, slowly but stealth-like into the living room with his blanket completely covering his body. He came to the doorway and stopped. He stood there without a sound until I said, “I can see you Nolan”. At which point, he turned and began his quiet retreat. However, the wall “saw” him too and BANG! Down he fell. He laid there. Quiet. Lost in his blanket. Seconds went by like minutes. Finally, he rose to his feet like an eagle out of the ashes and continued on his way. He never spoke. He never cried. He was invisible. Just a few minutes later, he was asleep (or suffering from a concusion).
I love that kid.
We love all of you who continue to pray and keep Tank in your thoughts.
Courtney
Tuesday, October 11, 2005 6:19 PM CDT
You know, it's weird. Our life is getting "back to normal" in many ways. Yet, so much of our lives for so long had been abruptly readjusted to manage Nolan's cancer that it's hard to find "normal" again.
What was normal for Nolan before will never be again. He has gone back to daycare (normal), but the process has been so effected by his being home. He cries terribly when I drop him off, when before, he smiled. He is putting on weight again (normal), but the way the weight settles with a bulge in his side isn't. Nolan throws temper tantrums like every other two year old, but it's much more difficult to "parent" that behavior because punishing him feels adverse to the wish to just have him live. Nolan has an ear infection (normal), but we are much more vigilant than we would have ever been before because we have to be. Finding NORMAL isn't easy when your prior definition doesn't fit anymore.
I know it might sound like we are struggling, and we are a little, but overall we are all actually doing pretty well. Nolan is healthy, happy and energetic. He's up to his usual shenanagan's...
Sunday morning, Jason and I woke to Yaya quietly (which in itself is amazing, since Yaya's usual tone is one that rivals any emergency vehicle siren) saying to us "wake up. Nolan caught the house on fire."
Jason jumped up and went to the kitchen, where he was greeted by a thick cloud of black smoke (smoke detectors???). He zeroed in on the toaster oven that we leave unplugged on the counter.
Apparently, Tank had decided to take a stick of butter out of the fridge, unwrap it, throw the wrapper in the garbage, pull a dining chair over to the counter, plug in the toaster, put the entire stick of butter into the toaster and bake it. Has anyone ever TRIED to clean a stick butter out of a toaster oven?
Also, let me warn any of you out there with two year olds...beware of Japanese Steak Houses. Nolan decided that he would try to emmulate the cook there by smashing six eggs on the floor in an attempt to cook them habatchi style. We found him sitting amidst cracked egg shells, covered in eggs, stirring his concoction ever so patiently waiting for them to cook. YUCK!!!
He's a riot I tell you. Both of the kids are just the light of my life. I am so grateful to have to clean up after Nolan every single day. See? Instead of being frustrated or mad (normal), I'm actually grateful.
I HAVE LOST NORMAL COMPLETELY!!!! Although, I am no longer forgetting my shoes when I leave the house or washing paper plates. I guess those are some steps in the right direction.
Granpa Roger is doing well. He is out of the hospital and get this...he doesn't have lung cancer!!! YIPPEE!!! They don't know just what he has and we have to wait 6 weeks to know more. Keep you all posted! Thanks for all of your calls and prayers.
Geez, I've been away from journaling too long...
Love to all of you!
Courtney
p.s. please check in on a friend of mine's grandson at www.caringbridge.org (it's a new one so then you type in zacharyconover).
This little trouper could really use prayers right now!
Sunday, September 25, 2005 5:14 PM CDT
So sorry it has been so long since our last update and I promise to do a better update tomorrow, but for now...
Jason and I were able to get a hold of Nolan's usual doctor who actually was so kind and called us from vacation. He said that in 30 years he's not seen what showed up on Nolan's scans (figures!). However, he did say that with the new CT at Children's, they are seeing lots of stuff that they've never seen. Dr. Levien said that the scans do indicate cysts on Nolan's pleura (sp?), but that he does not believe them to be anything other than cysts. He said that Nolan could have been born with them. Dr. Levien is going to have a pediatric lung specialist take a look at them though. He also said, contrary to the other doctor, that Nolan should continue to get CT scans every six months. Ok. There it is.
Lots else has been going on, but I will write more tomorrow. Thanks to all of you who continue to include Nolan in your prayers. We are so thankful!!!
More tomorrow...with NEW pictures.
Also, Nolan's Granpa Roger goes into the hospital tomorrow for removal of the tumor(s) in his lung. Please say a prayer for him too.
We love, love, love you Grandpa :)
Courtney
Friday, September 9, 2005 3:42 PM CDT
Quick update:
Visit was overall good. Nolan had a little difficulty with getting his blood drawn and he reeeaaalllly wanted "mommy have boo-boo" so we both walked around CCF with our arms wrapped in tape. He was pleased. Test results as follow:
Ultrasound- good!
Blood Work- good!
Weight- time for gaining weight prayers. He wants him to come up from the 25th percentile and will keep seeing him monthly until he has consistent weight gain. He didn't gain any in the last month.
CXR- Haven't heard, so I'm assuming good! One small thing to note here that, of course, has me surfing the web. The doctor indicated that on Nolan's CXR in July there were some cysts located in the lower part of the lobe. After he picked me up off of the floor, he told us that it is nothing to worry about and that usually they are a "normal variance" (don't ask what that means cause I don't know). He says that the best way to track them is by CXR to see if they get larger. So...that's what we'll do.
I will just keep repeating, "I WILL NOT FREAK OUT", "I WILL NOT FREAK OUT", "I WILL NOT FREAK OUT".
Jason says that he is going to just act like he didn't hear it because it's easier to be in denial.
Love to all of you who have been praying for Nolan. It's working!!!!
Courtney
p.s. My cousin e-mailed this to me today and I love it. I don't know who wrote it, but it's great...
A little girl had been shopping with her Mom in Target. She must have been
6 years old, this beautiful red haired, freckle faced image of innocence. It was pouring outside. The kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning and just inside the door of the Target. We waited, some patiently, others irritated because nature messed up their hurried day. I am always mesmerized by rainfall. I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories of running, splashing so carefree as a child came pouring in as a welcome reprieve from the worries of my day.
The little voice was so sweet as it broke the hypnotic trance we were all
caught in "Mom, let's run through the rain," she said.
"What?" Mom asked.
"Let's run through the rain!" She repeated.
"No, honey. We'll wait until it slows down a bit," Mom replied.
This young child waited about another minute and repeated: "Mom, let's run
through the rain,"
"We'll get soaked if we do," Mom said.
"No, we won't, Mom. That's not what you said this morning," the young girl
said as she tugged at her Mom's arm.
This morning? When did I say we could run through the rain and not get wet?
"Don't you remember? When you were talking to Daddy about his cancer, you
said, 'If God can get us through this, he can get us through anything!"
The entire crowd stopped dead silent. You couldn't hear anything but the
rain. We all stood silently. No one came or left in the next few minutes.
Mom paused and thought for a moment about what she would say. Now some
would laugh it off and scold her for being silly. Some might even ignore
what was said. But this was a moment of affirmation in a young child's
life. A time when innocent trust can be nurtured so that it will bloom into
faith.
"Honey, you are absolutely right. Let's run through the rain. If GOD let's us get wet, well maybe we just needed washing," Mom said.
Then off they ran. We all stood watching, smiling and laughing as they
darted past the cars and yes, through the puddles. They held their shopping
bags over their heads just in case. They got soaked. But they were followed by a few who screamed and laughed like children all the way to their cars.
And yes, I did. I ran. I got wet. I needed washing.
Circumstances or people can take away your material possessions, they can
take away your money, and they can take away your health. But no one can
ever take away your precious memories...So, don't forget to make time and take the opportunities to make memories everyday. To everything there is a season and a time to every purpose under heaven.
I HOPE YOU STILL TAKE THE TIME TO RUN THROUGH THE RAIN
Tuesday, September 6, 2005 7:02 AM CDT
Well, Labor Day is over and the kids had so much fun playing outside and enjoying the beautiful weather. The above picture is of Nolan and his Uncle "Stewie" swimming in Florida.
Yaya had her sleepover that she was promised since she couldn't have one for her birthday in February. She had a ball and was so glad that Chloe, Nicole and Jessica could come. She is also easing back into school and adjusting to the second grade. Other than troubles with those "mean ole boys on the playground" she seems to really like it. I couldn't believe when she brought home a math test in which she completed 50 addition problems, 49 correctly, in 10 minutes. Jason and I are so proud of her.
Nolan is also doing pretty well. We continue to be concerned about his eating and his sleeping, but he's doing pretty good overall. He's beginning to really like books and to be able to focus on one thing for a longer period of time. He's beginning also to learn more words (thank goodness) and to try to use them. It's still one of those things though that only Jason, Julia and I really understand most of what he's saying. Yaya is terrific too at helping him learn new words all the time.
Jason’s clusters seem to be getting better. Thank goodness. Also, thanks to all of you who called or sent e-mails to see how he was doing. You all are the best!
Anyway, this week is scans. Friday. Jason and I are becoming anxious about them. As I was trying to sleep last night, rather unsuccessfully I might add, I was mentally attempting to put the anxiety I feel into a concrete example that I could then use to explain the feelings. The image that kept coming to mind is one that others have probably experienced...
Imagine sitting quietly in a chair in your yard. The sun feels warm. Every part of your body is just relaxed. Eyes closed, you can smell the common smells of the warm summer day and you take one deep breath in and slowly release it into the cooling breeze. Your mind begins to drift gently away from the tasks of the day and a warm peace moves through you. A very faint hum begins to fill your ear and you are gently nudged into awareness that you aren’t alone. You attempt to filter the hum out and neglect it for the continued warm sunshine and deep relaxation, but the buzz gets a little louder. At first, the sound is indistinguishable and you cannot place it. As your attention is drawn away from the peace surrounding you and the sound becomes louder, it suddenly hits you. Your eyes fly open, your heart rate begins to speed up, breathing deepens and your head begins to turn this way and that attempting to locate the sound. It’s there! Right next to you! Your awareness is now focused on avoiding the pain of a sting, you think of some choice expletives, stand up and begin to flap your arms, walking quickly or running in large circles attempting to outwit, outlast, outrun, outmaneuver the biggest, ugliest bee you have ever seen. No matter what you do though, that bee is determined to stay with you and the threat of being stung at any second is forefront in your mind. No matter where you go, no matter what you do- there’s the bee. Most of the time, you don’t get stung. Sometimes you do.
Ok. Maybe it’s a little simple. Maybe it’s a little dramatic. For me, last night, this was the scenario that played out over and over again. No matter how calm, focused and surrounded by wonderful things you are, scans come and so does the anxiety and fear of pain. Please pray that Nolan’s scans are good on Friday. Jason and I could use some positive thoughts too. It’s gonna be a rough week…
Much love- Courtney
Friday, August 26, 2005 10:01 AM CDT
Sorry for the delay in journal entries. Our computer has been on the fritz and we just got back from a MUCH needed vacation. We went to Nana and Poppy’s villa in Naples, Fla. It was great. Where to start????
Yaya had a great time in Naples. She loved riding on the airplane and she got to swim until she could swim no more. She also got to go to the beach a couple of times. One of the beaches, Barefoot Beach, had some great shells and she got to bring home a bag full. Yaya has returned home tan, rested and with an ear infection (of course).
While in Florida, Julia decided that she wanted to try her hand at comedy, not sure why, and made up many, zany jokes. One of her last ones, she was particularly proud of so I thought I’d share it (Denise, you specifically will enjoy this)….
Why does the CooCoo Bird fly west?
To get to North Dakota!
I know, I know. WHAT??? But that one was so silly that Jason and I couldn’t help ourselves and laughed until we cried. Now Julia is sufficiently reinforced and believes herself to be one of the funniest people on the planet. She is so inspired that she is making up more and more jokes. Watch for her HBO Special…
As for me, I believe my Grandmother’s curse worked. You know the one…”When you grow up I hope you have a little girl JUST like you!” I think I might just use it myself.
Nolan also enjoyed swimming and playing in the water every day. He had no fear of either the pool or the beach although was not too find of the “salt water effect” on his eyes. Tank was constantly enjoying the novel sights around him and was particularly drawn to the wildlife. You know, the birds, dolphins, sting-rays, lizards, ants, etc. Julia was kind enough to show Nolan how to catch the lizards and other small bugs, so now Nolan doesn’t just like Julia, He WORSHIPS her. She is his GODDESS. One thing I can say about Cleveland is thank goodness we don’t have lizards here. I am saving tons of money on aquariums and crickets.
One of the other things Nolan loved to do was to jump off the side of the pool into our arms. Anyone who knows him though knows that he did this in true Tank style. Tank would NEVER timidly jump into the water after a reasonable count of three. Oh, no, no, no. Tank stands straight and tall, swings him arms at his side, smiles broadly, yells “CANNONBALL” at the top of his lungs and takes the largest leap he can. Much to the dismay of any sunbathers seeking quiet serenity, I can honestly say without exaggeration, he must have done this 200 times over the course of our stay. Tank LOVED it and it was wonderful to see him so full of energy and happiness.
Of course, nothing we seem to do these days is without some kind of negative influence and we had a few while on vacation.
First, Grandpa Roger was diagnosed with lung cancer. Fortunately, he only lives two hours from the villa in Naples so we were able to spend a terrific day with him. The kids loved playing with him. Gail hosted a terrific lunch and we were really happy to have that time. Gail and Roger, we love both of you and are will be with you the whole way through this fight.
Then, Nolan spiked a fever. We had to take him to the ER where after blood work and a shot of Rocefin (sp?), he was able to leave. The next day, he was feeling much more chipper and was without fever. Let me tell you though. The Cleveland Clinic in Naples doesn’t hold a candle to the one here. Yikes! We were reminded how lucky we are to have the kind of care that Nolan has here.
Finally, Jason started to get cluster headaches again (he hasn’t had any in three years). He was out of commission for a good part of two days. I am hoping being here in the cooler weather, the cycle will break and he won’t have to experience the pain of them anymore. Doctors say stress brings them on. Hmmmmm…he hasn’t had any lately has he?
Anyway, again thank you Nana and Poppy for the wonderful vacation and for your on going support. We love you.
Thanks to all of you who continue to check in with us and who continue to pray for Nolan and our family. Nolan has scans coming up in two weeks so please continue to pray for his recovery and healing.
Love to all of you- Courtney
Friday, August 12, 2005 4:23 PM CDT
Well today was Nolan’s first appointment since he got his medi-port out. I was so nervous about them drawing blood out of his arms, because it hasn’t been that easy in the past. Well it went fine He (Nolan) was looking at me like ..”Dad no problem…. chill.” So all went well he is growing hair and gaining weight. We made an appointment for September for more Chest x-rays and Ultrasound then in October for more cat scans.. I know this will all be over eventually, but man this takes its toll. Nolan, he could care less, actually I think he misses going to the Doctors, he was running around playing with all the toys and didn’t want to leave. Go figure. So as Nolan as our inspiration we go on after all that’s all we can do, but the future looks Bright. Thanks for reading
Jason
Dad we are all thinking of you and wishing you a speedy recovery
Sunday, August 7, 2005 4:48 EST
Hi all. I know it has been several days since we have updated the site, sorry. Our modem died and the cable company took forever to come out and fix it. Anyways, Nolan is doing unbelievable!! I think he is making up for all the energy he did not use when he wasn’t feeling as well. We are working on potty training, and he has figured out how to take his own diaper off in the middle of the night which is not so much fun. I think he will go potty anywhere in the house except in his potty. But enough of that, because its just great seeing him be so alive and happy. So his mediport is out which you all know and that scar is healing nicely. Friday we get to go back to the clinic for blood work. Let me tell you I am glad the port is out, but I am not looking forward to blood tests without it. Not much more to report on, we are just enjoying the Summer with Nolan and Julia as the summer quickly comes to an end. Thanks you all for still reading and caring, and if you left a utensil at the party, we have many, but we don’t know who they belong to so contact us.
Jason
Wednesday, July 27, 2005 2:14 PM CDT
The party was a total success. We had the most beautiful weather and there were tons of kids, food, and fun. The above picture is of Nolan (left) and Patrick.
It was just great to see so many of the people who have helped us out in the same place at the same time. Some had never even met Nolan so it was really wonderful. We had some of Nolan's favorite foods, mac & cheese (Nolan could be the poster child for Kraft I'm pretty sure) and fruit kabobs. Of course there were other tasty foods provided by various people. Thanks to all of you for chipping in. We couldn't have fed everyone without you and for sure it wouldn't have tasted as good. Thank you Stu, Barrie, Matthew, and Sandi for flying in and to Kathleen, Dave, Kenny and Ian for coming on your Harleys. Jason and I cannot begin to tell you how much it meant. It was great celebrating this triumph with all of you and Nolan LOVED all the Harleys in the front yard (so did my neighbors)! Thank you Nana for all of your party planning expertise and for keeping me organized. Thank you Sally and Tommy for all the chairs and tables. Without you two I would have had 60 people sitting on the ground! Thank you Cindy and Dave for party planning tips and hooking up the mac and cheese (also, please thank your Stouffers connection again for us). Thank you Stu for help with set up and Barrie for having terrific puzzle skills!!!! It was a terrific party to bring in the end of Nolan's treatment!
The party and other events have stirred up, yet again, a whole lot of feelings. Many of them are attached to vivid memories of this whole process. At one point on Friday when we were setting up, Tank, Yaya and their cousin were all running around the yard. Tank kept falling over, getting back up, falling over, getting back up, on and on. He was trying so hard to keep up with them and just couldn't. He loses steam so quickly still. Mind you, it sure doesn't keep him down for long, but it is a reminder of what he is going through and it brings feelings of such sadness, fear and loss of control to Jason and I. I simply LOST it. In the midst of setting up for a GREAT party, it is still difficult to avoid the feelings (or the dark cloud as some call it) that are always lurking. I really hate that he had cancer. I really, really do.
Yesterday, Nolan had his mediport out. Jason had to work, so Yaya went to a friends house for the day and Grandma Sandi and I woke at 4:30am to be at the clinic by 6:30am for a 7:30 surgery. The doctors told us it is a simple surgery and in and out. Well, the good news is that the port is out and this is a milestone for Nolan and us all. We are thrilled.
On the other hand, of course, things didn't go quite as planned. In order to remove the port, Nolan was placed under anesthesia. In truest of Nolan form, something unexpected happened. He experienced something called "exiting delusions". As I understand it, because parts of the brain are "shut down" during anesthesia, sometimes it takes them a while to "wake back up" and for most, this part happens for everyone. However, usually folks wake up and return to reality. Nolan didn't. It was awful. We weren't warned about this side effect and so didn't expect it. Because he had been under this type of anesthesia before and hadn't had this type of reaction, I don't think anyone did. So, when he began to wake, the nurse ushered Sandi and I into the recovery room to meet Nolan. When we arrived, his eyes were closed and he was kicking, screaming, hitting and generally FREAKING out. The nurses helped me pick him up thinking that hearing my voice and feeling me might reorient him. Notsomuch. He kept on for about 15 minutes and to the point, that he was at risk for injury so they re-anesthesized him and he went back to sleep. The hope was that if they gave him a different type, he would recover from it better allowing the other one to wear off. Again. NOPE. He woke in the same way he did before and it was simply AWFUL. Doctors were gathered at the door just watching. Nurses were standing near in case I needed help and Grandma Sandi and I just allowed him to kick, scream, punch, and pull hair for over an hour while we restrained him best we could from pulling out his IV. Then, Sandi and I lost it. It was one of the most frightening experiences I have ever had. Ultimately, after over an hour, he began to open his eyes and become oriented. We were able to take him home at about 11:30. Mediport out, stitches in and Nolan asking for food.
Sandi and I were able to drive home and then both of us just wept. It was an unexpectedly greuling day and I am glad it's over. In the end, the mediport is out and Nolan is fine. He has a little pain from the stitches, but no fever as warned and no puking (thank goodness).
We'll update again in a few days. Please continue to pray for continued health for Nolan.
Love to all of you-
Courtney
Wednesday, July 20, 2005 11:00 AM CDT
We're gearing up in a big way for our end of chemo extravaganza on Saturday. It sounds like the weather will cooperate which is a good thing given the amount of people I would have to cram into my house if it rained. I wish we could have every single person that has supported us in some way, but since so many people were so generous, it just isn't feasible.To those of you from around the country that have prayed, given funds, cooked food, sent care packages, toys and cards, and purchased bracelets please never forget that we will forever be grateful. If any of you ever need anything, please remember that you can count on the Taft Family!
We're getting excited and both Tank and Yaya have been chipping in tremendously to get the house clean. Julia particularly loves the $$ she is earning! Given all that Nolan and we have been dealing with, this is the first time I have done a thorough cleaning of the house since we moved in last August. You should have seen Julia's face when we moved the fridge! Priceless.
Speaking of Julia, you have to check out the picture in the photo album. I NEVER would have guessed that I had a daughter gifted in fishing, but....I think her Great Grandpa Parsons spirit is with her when she fishes. He always loved to fish. The truth is, she caught three fish and caught them with cheese!!!! Funny :) Other than that, she is having a great summer. She's very much enjoying having me around more and I can see positive changes in her behavior. My time off with both of them has helped. Particularly with Nolan.
Nolan really requires much of our attention and continues to need many "attitude adjustments" every day. I don't know if it's a boy thing, a sibling thing, his cancer experiences, or all three, but BOY IS HE A CHALLENGE! (Jason and I think it's all things rolled into one.) Both kids have been through so much over the past 7 months. Sometimes, I am astonished that all of us aren't in the "boobie hatch". I think it's going to continue to take a while to help the kids "get back on track", but I see a little progress every day.
A short Tank story before I sign off...
So, When I see Nolan after returning from the store or when he wakes up in the morning, I am in the habit of saying, "Hi, baby!" This morning when I went into his room to get him up, he looked at me and yelled "Hi, Baby!" It was so cute.
We'll check back in soon. Until then,
Much love to all of you-
Courtney
Tuesday, July 12, 2005 10:42 AM CDT
All is well. I have been enjoying some time off with the kids and Nolan is doing well although still struggling with neuropathy. He continues to just topple over numerous times a day. He did, however, have the coordination in the middle of the night a couple of nights ago to reach through the bars in his crib, find a diaper and change himself. When we went to wake him the next morning, he was sleeping so peacefully. He had his Elmo under one arm, basketball under the other and BOTH legs through one leg hole of the new diaper. It was pretty funny.
His favorite things these days... singing E-I-E-I-OOOOOO over and over again at the top of his lungs. Actually, he likes to say (yell) most things at the top of his lungs. He is becoming rather acquainted with the time out spot too! He likes to find the biggest toy he can and chase the dog, cat, and Yaya around threatening to hurt them. When I catch him, he tries to act all nonchalant. He will put a 2x3 plastic workbench behind his back, thinking I can't see it and then smile brightly and yell youdly "HI!". What a character I tell you. His ego is crushed when he doesn't get away with it and then he does his famous pouty face. It's hysterical.
Anyway, I'm going to wrap it up for now.
Much Love To All Of You-
Courtney
Friday, July 8, 2005 7:32 PM CDT
ALL CLEAR! ALL CLEAR! ALL CLEAR!!!!!
Those are some really great words to say. I might just keep saying them over and over again. (Of course, I might look a little funny walking through the grocery store repeating them, but who knows maybe I'll get a fast check out!)
Tank did absolutely beautifully. After an initial surprising and unusual freak out, he cooperated like usual. When the techs would tell him to roll over he did. Of course, he did regress a bit and began to throw things at the one girl, but she didn't mind because his lower body remained pretty still. He threw. She handed it back. He threw it again at her and again she handed it back. On and on.
Counts were good too and so today was officially termed "End of Therapy". No Mo Chemo! Visit the following for the song:
http://www.speciallove.org/Camp Songs.html
What's next? Nolan will go to HemOnc 1x/mo for a full year from today. He will continue to have scans every three months and an echocardiogram to monitor his heart valve issue every six months. The surgeon is calling on Monday to schedule his port removal and Tank will continue to have neuropathy for up to a year. He will continue to take preventative antibiotics for a while (I think 3-6months) and he will keep on growing like a weed and get his hair back! YIPPEE! I honestly cannot remember what it is to see him with hair. Right now, he's got a little peach fuzz and I just love touching it. Nolan will continue to have visits to HemOnc for five years with the spacing between visits changing yearly. Scans will continue every three months for two years. They will consider him cured after 5 years.
Seem like a lot? TELL ME ABOUT IT!
Anyway, we are so happy today and I'm a bit crazy right now as I have had terribly frightening nightmares the past couple of nights leading up to today, so I'm pooped. I didn't talk too much about my anxieties and fears this time with people, but they were there and came out in my dreams. I need sleep...
Thank you to all of you who called today to check in and for all of you who have and are praying for Nolan. It's WORKING!
Love to all of you-
Courtney
Wednesday, July 6, 2005 1:18 PM CDT
Phew! What a weekend. For the first time, in a very long time, all of us were able to have fun together. Julia and Nolan have just had tons of fun. Nolan felt pretty good for the most part. His legs still continue to bother him and at times, if given the straight line test for sobriety, would surely be locked up in the pokey. It's very hard to watch. He sort of looks like an hour old foal who tries to stand up, but just can't. People look at Nolan so oddly sometimes, wondering what the problem is. I still get comments "he's so small for 26 mos.!" "He sure is bald for two!" Sometimes, I just want to bonk some people right in the nose. Geez, have I gotten off track...
Honestly, the time that we spent together over the past couple of days has been wonderful. There were a couple of times, in the midst of Yaya and Tank having a blast, that I teared up. I'm not sure why...jubilation, sadness and fear I think. What strange emotions to have all at once when all that was happening was the kids were playing. The weekend was full of old and new friends, dancing, singing, playing games, swimming, eating and drinking and tons of sentimental reflection. I couldn't have asked for a better weekend. I didn't allow myself to think about scans on Friday and I'm glad.
I am trying desperately to think and feel positive about the scans and I just want to believe in every cell of my body that Nolan is without cancer. Given a conversation Jason and I had last night, I know he's trying to manage the unbelievably strong feelings that come just before scans. He's having trouble concentrating on anything at all and refuses to plan the "end of chemo" party until after. He has gone in to a type of "shut down" mode and probably won't take a full breath until after Friday.
Needless to say, the kids have no idea about Friday which is a good thing. Jason and I are going to try to stay busy, busy, busy to keep our minds off of it. We could really use some prayers from all who might be willing and some wise words from all of our caringbridge folks right now.
We will update after scans on Friday...
Love to all of you.
Courtney
Sunday, July 3, 2005 12:37 AM CDT
Let's see. We have been busy, busy, busy around here. Nolan has been feeling pretty good. He has been playing and enjoying the weather. He continues to experience neuropathy and the other day his legs totally gave out on him and he fell and cut his lip open. The cut was pretty small, but he looks kinda like a prize fighter with the swelling of it!
I wanted to get some of the newer pictures up and change the background for the 4th of July. I will write more in a couple of days. Everyone enjoy their holiday and remember our brave women and men all over the world!
Love to all of you-
Courtney
Monday, June 27, 2005 4:29 PM CDT
Well...let's see. The weekend was pretty good. I came down with the flu on Saturday and was "out of commission" most of the day. Thankfully, except for the fitfull sleep last night, I am feeling better.
Yaya continues to grow and grow and grow. Every minute she amazes us with something. She started camp again this week and has decided she wants to do the overnite camp on Thursday. Jason and I will talk about it I guess. She says she's having a "GREAT" summer. I'm so happy and relieved. It's been a hard year for her.
On to Tank...this weekend he decided he was going to start pooping outside. This was a clue! It is time for potty training. So, this morning, I ran up to KMart and bought him his potty chair. I brought it home and thankfully the instructions (although about 9 pages) were simple enough even for me. It's a funny chair. When he goes to the bathroom it will play a little tune. For Goodness Sake! I guess the potty dance (usually performed by parents or unwilling grandparents) is old fashion now. Anyway, after putting it together, Tank took right to it. He turned it upside down, stood on it, through toys in it and eventually figured out he could sit on it. Next, he discovered that while sitting on the potty, he could do a half head stand, which of course, cracked me up and encouraged more acrobatics. However, during the gymnastics routine, he peed! Along with the tune from the potty, I danced, sang and jumped up and down. Which prompted him to want to stay on the potty for about an hour. Later, after a total of three pees and lots of jumping up and down, he went down for a nap. I thought to myself, this is it! He's got it and he loves it!
NOPE.
Yaya returned from camp and excitement was in the air. She couldn't wait to see him pee in the potty. We tried and tried to get him to go. Unfortunately, Tank was like a dog who had marked his territory and wouldn't let Yaya in the same room as the potty. This resulted in him hitting her and being placed in time out. 1.5 minutes into the time out, he removed his diaper and peed on my carpet! Little stinker! He outsmarted me again!
Although proud, I am stocking up on carpet cleaner...
All is well otherwise.
Don't forget to say some prayers for some of our caringbridge kids and families:
www.caringbridge.org/oh/oliviagood
www.caringbridge.org/nc/bonnieclaire
Special prayers for Matthew and his family at
www.caringbridge.org/canada/matthew
Love to all of you-
Courtney
Saturday, June 25, 2005 9:11 AM CDT
Here's the news from Tank's clinic visit...he doesn't have to go back until scans on 7/8! Can you believe it? Wow. Wonderful and scaaaarrrry. ANC=2.02! It hasn't been that high since prediagnosis. Mono % ("baby" neutrophils) is low, but his ANC would have to drop a ton (1.3 or so) to even worry. His hemoglobin is dropping as it usually does (11.4) but he doesn't usually require intervention until 9.0 or so and we know what signs to watch for if he should require a transfusion. I guess we're Nolan hemoglobin experts at this point. We are so impressed with Nolan. Really. He gets chemo and his counts go UP! What a spirit. We also believe that many of you out there are still praying for him and that those prayers are really helping. Please look at the pictures in the photo album as they are just a few of the folks who continue to heal Nolan in their own ways.
By the way, the Pampered Chef Fund raiser given by my co-worker and friend, Amy, raised $450.00 for the fund. Jason and I were floored and of course very thankful.
Please remember to include all of the parents and kids fighting this disease in your prayers. There are several families who have been tremendous supports for Nolan, Julia, Jason and I:
Olivia (Livi) Good www.caringbridge.org/oh/oliviagood
Bonnieclaire www.caringbridge.org/nc/bonnieclaire
Laurel www.caringbridge.org/sc/laurelrose
Haley Mathis' family could really use prayers as Haley passed away this week from this horrible disease. They are an unbelievable family and all of them fought hard and "live strong" www.caringbridge.org/ne/haleygirl
Anyway, I want to keep this short. I've been taking a lot of "heat" about not updating as often as I used to so I will try to do it more regularly...
Love to all of you-
Courtney
Saturday, June 25, 2005 8:49 AM CDT
Here's the news from Tank's clinic visit...he doesn't have to go back until scans on 7/8! Can you believe it? Wow. Wonderful and scaaaarrrry. ANC=2.02! It hasn't been that high since prediagnosis. Mono % ("baby" neutrophils) is low, but his ANC would have to drop a ton (1.3 or so) to even worry. His hemoglobin is dropping as it usually does (11.4) but he doesn't usually require intervention until 9.0 or so and we know what signs to watch for if he should require a transfusion. I guess we're Nolan hemoglobin experts at this point. We are so impressed with Nolan. Really. He gets chemo and his counts go UP! What a spirit. We also believe that many of you out there are still praying for him and that those prayers are really helping.
By the way, the Pampered Chef Fund raiser given by my co-worker and friend, Amy, raised $450.00 for the fund. Jason and I were floored and of course very thankful.
Please remember to include all of the parents and kids fighting this disease in your prayers. There are several families who have been tremendous supports for Nolan, Julia, Jason and I:
Olivia (Livi) Good www.caringbridge.org/oh/oliviagood
Bonnieclaire www.caringbridge.org/nc/bonnieclaire
Laurel www.caringbridge.org/sc/laurelrose
Haley Mathis' family could really use prayers as Haley passed away this week from this horrible disease. They are an unbelievable family and all of them fought hard and "live strong" www.caringbridge.org/ne/haleygirl
Anyway, I want to keep this short. I've been taking a lot of "heat" about not updating as often as I used to so I will try to do it more regularly...
Love to all of you-
Courtney
Sunday, June 19, 2005 12:19 AM CDT
Nolan, you are a champion in our eyes. Friday, you got your last chemo. You handled the last round beautifully and have fought hard throughout this whole ordeal. We are so proud of you. Of course, you are still a little bugger too. It's that energy that I believe has gotten you through this. You ARE willfull and for that we are grateful (although a muzzle might come in handy sometimes).
Yaya is doing great and growing like a "weed". She ended a full week on camp on Friday and loved every minute of it. She got to swim, fish (she is really good at fishing, don't ask me how), build forts, shoot archery, canoe, play games and make crafts. She had a ball and it was a great transition into the summer.
The Tank has had a rough week. He has felt lethargic and moody. The moodiness seriously impacts everyone. His newest thing is throwing things. He has also learned to snort. Hilarious I tell you. He puts the back of his hand to his nose, pushes in, and snorts culiminating in everyone around him laughing hysterically and him laughing right along. Talk about positive reinforcement. I'm surprised he doesn't have an imprint of the back of his hand on his face.
The two of them (Tank and Yaya)have learned that negative attention from the other is better than no attention at all. Right now, Jason and I are waaaayyyy behind the 8 ball in undercutting this absolutely horrible dynamic. What I keep remembering is that it is love that motivates them to seek the attention. I just wish they will quickly learn how to do this without yelling, pushing, kicking, biting, throwing things at eachother, etc. I swear, sometimes I think that Jason and I might need riot gear and pepper spray.
Anyway, today is father's day. I can only hope that Nolan grows up to be the kind of man and father that my dad, father-in-law and husband each are. Each of them have the traits that exemplify what it means to be a man and a father. I hope that Nolan inherits and learns the kind of compassion, chivalry, intelligence, kindness, integrity, commitment, and trustworthiness that each of them possess. If past predicts the future, I have no doubt that Nolan will grow to be an outstanding person and to each of them I am grateful. I love all of you very much.
Thank you to all of you who continue to check in on us. I apologize for the lapse in entries from time to time. I have been working something fierce and still have to juggle a lot. By the time I have a moment, it's 9pm or so and I can barely lift myself off the couch let alone find energy to make an entry. We very much appreciate your entries, because when we are feeling weak, we look to them for comfort and inspiration. Thanks to all your dedication.
Love to all of you-
Courtney
Sunday, June 12, 2005 4:19 PM CDT
Wow! What a busy, busy, busy week, but it ended wonderfully.
Nolan had clinic on Friday and his counts were down a little (ANC=.99; hemoglobin 10.3) and he's showing it. He's been far more tired and sleeping more, but when he's up, boy is he UP! We also had to start him back on lactulose because he is rather constipated these days.
With the weather being really hot and sunny, both of the kids have been playing a lot outside and loving it.
Yaya got bit by a mosquito (which she has a tendency to have allergic reactions to and her eye swelled entirely shut and was bright red most of the week. Ultimately, she developed cellulitis and had to go on antiobiotic. When her doctor was examining her, he asked if she could see okay, to which she sort of looked at him like he was from outerspace and stated, "not really. It's swollen shut!". (I know she was questioning his credentials at that point and whether he got his medical degree off line or something). Then, she went to the clinic on Friday with Nolan and Jason and the staff there were very concerned about her eye. When one of them asked her what happened that her eye was swollen shut she replied, "my dad punched me in the eye!" OHMIGOSH was Jason mortified. She, of course, told them she was just kidding. Anyway, the infection is clearing up now after a full week and she can again see clearly.
Yaya also successfully completed 1st Grade! It's just amazing. Jason and I are so proud of her.
Nana and Poppy watched Nolan and Julia overnite Saturday so Jason and I could go to our good friends' wedding. Both of them LOVE going there. When I dropped them off, they could have cared less that I was leaving because they were with Nana and Poppy. Geez! They took them to the Big Bug exhibit at the arboretum and had a ball it sounds like.
On Sunday, Aunt Kathleen and Uncle Dave visited us. We hate that they live in PA because we had a ball (even though I swear it was at 100 degrees and 90% humidity outside). I wish we could visit with them more. You know, they are two people who, I am sure, I have known for many, many lifetimes. Jason and I could talk to them for hours. We let Nolan and Julia talk every once in a while too though....
This Friday, given blood levels are good, Nolan will hopefully receive his last doses of chemo FOREVER!!! I have to say, although I am looking forward to it, I am also getting a little nervous that he won't be getting medicine to keep cancer from developing. On July 8th he has his next round of scans, chest, abdomen and pelvis. I know that NO ONE can ever be assured that their child won't get cancer and that just like the rest of the world, we will have to go on with our day to day lives, but I'm scared a little and back in the "trying to prepare myself" mode for all possibilities. I don't want my family to have to go through anymore of this ever again. Never. I'm hoping this Friday will be the end to a lot of it and I AM happy and excited.
Gosh! Do I sound confused or what?
Mima, hope your broken foot is feeling better. We miss you!
Jordan M....thank you, thank you, thank you for selling more of bracelets. I'm pretty sure you're one of our top sellers. We are very grateful to have you as a neighbor.
Much love to all of you who keep calling and writing. You are all really getting us through this.
Sunday, June 5, 2005 4:50 PM CDT
Busy, busy, busy. The weather has been great, so I'm doing all I can to keep up with both Yaya and Tank.
Thursday night ended with a Pampered Chef Party benefitting the NT Fund. It was so much fun. Amy and Susan were just so cool to do it. I can't say thank you enough to Amy, in particular for thinking of it and putting it on. She tells me it was a great success. Everyone there had a really good time. Really, social workers ROCK!!!!
Nolan's visit Friday went great. His counts were super (anc=177!) and he did terrific. We did end up getting a script for indigestion (Nolan not me), so I hope it helps. He put on a little weight and overall the NP was pleased. We spent some of our clinic time taking pictures of all the staff so that we will always remember them. They have all been so spectacular and we will always carry them close in our hearts. The Ped. Hem-Onc team was gearing up for Relay that night, and although we opted out for the Zoo night that the clinic was also involved in, we were cheering them on! They had 25 families (not including teams) so I'm sure it was a great success.
The zoo...I could write a book about our trip to the zoo, for real. (Don't worry, I won't). Generally speaking, it was stellar. There seemed to be more volunteers than families, which was nice because we had help whenever we needed it and we felt like the only family there (although I know 800 were actually invited). Nolan loves the zoo and this time, he didn't have to peer over other people's heads or between legs or bodies to see the animals. He just walked right up and got up close and personal. Many of the keepers were around to tell us interesting facts about the animals, which Julia just LOVED. We all learned a lot. Two short stories from it that I just have to document. On the more serious side, some of the vets and zoo educators, gave a tour of the hospital they have for the animals. Both Nolan and Yaya were loving it because they got to see some interesting things (like the sling they use to hoist 800lb. animals onto tables). At one point though, the guide swung open a large door that opened to an operating room. Nolan FREAKED. I have never seen that happen. Jason and I just looked at eachother like, "what is going on?" and then we realized...the room looked exactly like the one Nolan had his emergency bowel surgery in. Jason and I were amazed and a little sad. We just held him until the puzzled guide finally seemed to get it and closed the door.
Ok, on the lighter side, a Yaya story...
So the keeper of the monkeys was telling us about the group of monkeys they currently have in this one exhibit. She described who was the leader (Patrick) and who were the disciplinarians (both women of course) and that most were still "kids". One of the "kids" is named Charlie. The keeper described him as the trouble maker of the bunch. She went on to say that he is, in age, the teenager of the group and that ocassionally he breaks out of the exhibit. We were all amazed and discussing how he might actually be able to get across the deep and wide channel of water and over the very steep, smooth walls wired with low electrical charges. Yaya looked right at the keeper and said, "well, what do ya expect? Of course he can get out. He's a teenager! Teenagers are supposed to sneak out of their house!"
Needless to say, Jason, the keeper and I looked at eachother in stunned amazement. The only words muttered were Jason's..."the windows ARE getting nailed shut in her room" and then a roar of laughter. It was soooo funny.
I promised I wouldn't write a book, right?
Anyway, a couple of special thank yous to some very special people...
Amy- thank you, thank you, thank you. Your benefit was creative and thoughtful.
Elise- Yeahhhhh!!! Finally got to meet one of Nolan's angel's. Enjoy your summer and don't forget to check in next time you're back in town!
Jason- Your talent (my hair looks fab and I feel much better after my appointment!) and kindness are remarkable. It's special to me to renew our friendship after knowing eachother so long ago. Thank you.
Check out the new photos in the album!
Thanks to all the rest of you for continuing to check in on us! Please continue to keep Nolan and Julia in your prayers.
Courtney
Thursday, June 2, 2005 3:18 PM CDT
Great weather at last!! Well I have had the honor of staying home with Nolan the past two days and he has been a blast. No real complaints, he does get tired, but to make him feel better I take a nap with him so he doesn’t you know, feel like he’s missing out on anything (think I can pass hat one over on the wife) All is good in Nolan land we are counting down the days until his last Chemo… Yeah!! I cant believe it is soo close. I didn’t think we would ever see the day. I don’t know what we will do with our Friday mornings now.. Well, not much more to say he has his appointment tomorrow for blood work and we are not to worried he’s been in a great mood and very active. Then tomorrow night we are going to the Zoo with the Cleveland Clinic. That will be fun Nolan LOVES the Zoo. So all have a good weekend, and thanks for reading.
Friday, May 27, 2005 4:42 PM CDT
Clinic visit update...
Nolan has had his second to last chemo! YEAAAHHH!!! It was the last of the doxy. I wish it was the last of the vincristine (or "mean christine" as another caringbridge child calls it-Bonnie Claire) so that he wouldn't have to have the leg problems. It'll be soon though and we are thrilled. Nolan's counts were good. ANC=1.64. I think that's the highest it has been actually.
Nolan handles himself wonderfully at the clinic now. He goes right in, jumps up on the scale, puts his arm out for BP, lifts his shirt up for "tubie" and then proceeds to fill the three vials of blood, shake them, and put them in the "tube mail". It's simply unbelievable how well he knows the routine and how the process has been normalized to the point that he has nooooo anxiety. I tell you, the Cleveland Clinic staff are a big part of how well he is managing. I think they are angels.
They do think Nolan might be having some acid reflux because sometimes during and after eating, he makes these weird grunting noises. Kinda like he's trying to make himself burp. We will monitor this over the next week and if it continues, they are going to prescribe him some medicine. Nolan lost about a pound since last week and we're thinking it may be due to this problem. Back to increased Boost Breeze. Gotta keep his weight up.
Nolan also had an echocardiogram done today and results were overall very good. His heart is functioning great. However, the doctor noticed something that we will need to monitor. Apparently, his inferior vena cava (IVC for short I've been told) has developed a "hook" in it. The IVC is the vessel that carries the unoxygenized blood from the lower extremities back to the heart for oxygenization. Usually, this vessel is straight. Nolan's now looks like a hockey stick (doctors analogy not mine). The cardiologist talked to me about this and he believes it is due to the IVC being in the area where Nolan's surgery was performed and scar tissue is causing it to bend. The good news is that Nolan's heart is functioning perfectly and the blood flow is not ocluded except for a very,very tiny bit. The doctor does not believe that Nolan needs any kind of treatment for it, but they want to watch it closely for a good while to make sure that the blood flow continues to be good and the curvature doesn't worsen. The cardiologist does not believe it will get worse, but the possibility exists. He also said it will not get better. So, even though Nolan will never be allowed to play hockey, at least he will always have a stick! Ok. Baaaad joke. Not even funny in the least. Sorry.
Finally, and I'm not sure why, the clinic staff added some more scans to the scans that were already scheduled for July 8th. I think they added chest CT and x-ray. My thought on this is, Great!!! We'll be really, really sure that he has doesn't have cancer anywhere. I am not looking forward to the length of that day though. Yuk.
Anyway, I hear lots of noise upstairs so I better get off this computer before someone ends up sticking a finger in a light socket or something.
Love to all of you-
Courtney
Wednesday, May 25, 2005 6:15 PM CDT
Not much to update today really. Nolan has been Difficult today per Jason's report and Jason was quite ready to leave for work tonight. I'm stressed out terribly and have no ability/energy to write anything. All sense of humor is gone tonight.
Friday, Nolan goes for his second to last chemo treatment (vin and doxy) as well as an echocardiogram. Why echocardiogram? The chemo takes a toll on a lot of systems, and although rare, it can effect heart function. So, they do this test to be sure that his heart is still functioning good.
We'll keep you all posted. Sorry for the poor update, but like I said, this is all I can muster.
Continued love to all of you.
Courtney
Sunday, May 22, 2005 1:19 PM CDT
EXHAUSTED. Nolan, Jason and I are at least. Yaya could ride her bike forever. I swear, we have to practically peel her off of it.
Nolan's clinic visit went really well. We are definately on track for his last round of chemo in mid June. We cannot wait I tell you. Every day that we are closer, Jason and I are more and more optimistic. It's weird to even be writing those words. My one friend and I were talking the other day and she asked how many more. When I told her two she exclaimed "I can't believe it's almost over already!". To which I replied, "It feels like forever that we've been doing this." This has, by far, been the longest, most exhausting, toughest, most excrutiatingly emotional 5 months of our lives.
The weekend has been crazy busy. We're excited that Nana and Poppy are coming home from their trip this Tuesday. I know the kids are going to be thrilled to see them. Nolan and I went over there to water their plants and check the house the other day and Nolan just went from room to room saying, "Nana? Poppa?" He misses them.
You all should see Nolan's head. Not only is it basically entirely without hair, but now he has about 8 scratches, bumps, bruises from various things. Any of you Cancer Mom's out there can probably appreciate what I mean when I say that I take him to the store and it's a little uncomfortable. So many people stare or stop to look at him. I know they mean no harm, but it's awkward. Anyway, now I'm even more uncomfortable because I fear that at any moment, a social worker is going to stop us and accuse me of abusing Nolan given his accident prone nature and his total lack of hair. I am comforted by the fact though that I think I would have tons of people to come and bail me out of jail or slip a nail file into a cake (Jill, Nanette, Karen, Lauri).
Not too much more to report. I'm beginning the process of wrapping my brain around getting a Nanny of some sort to take care of Nolan beginning a few weeks after his chemo ends and until the end of September (the clinic doesn't think it's a good idea to send him to daycare before then). I have VERY mixed feelings about it. We were able to get a donation from The Betterment Foundation so that we could afford someone skilled...what a tremendous gift!I just have to begin the process of finding someone that Jason and I will feel confident in. Yikes.
Thanks to all of you for checking in. We are grateful everyday for all of your support, encouragement and prayers. We never feel alone.
Much love to all of you
Courtney
Wednesday, May 18, 2005 1:15 PM CDT
"Hell hath no fury" like a two year old on chemo…
That about sums it up for the past couple of days. On a positive note, Yaya has learned one way to cope with Tank's incessant whining, crying, screaming, throwing, etc...
Last night, Julia was doing anything she could to stay close to me and away from Nolan. I, of course, was cleaning like a mad woman. (Anyone who knows me then should extrapolate that I am completely stressed out, i.e. the more stressed, the cleaner my house becomes). Anyway, Julia offered to help so I suggested she get the vacuum and I could teach her to vacuum. She was Excited and ran to get it. After showing her the “how to’s” she turned the vacuum on and realized that Nolan ran away from her. Now she’s a very bright girl and I have a sneaking suspicion that I may just start to have the cleanest floors this side of the Mississippi. Yikes! I just now realized that I need to find a new coping skill because I gave one away to Julia!
I want to direct anyone checking in to Grandpa Roger's and dad's playset on the photo page! Isn't it beautiful? I think if it were up to Jason, he may just put 12 coast of shlack (sp?) on the thing and make it a museum piece. He's worked so hard on it and is very proud. Julia and Nolan love it too. Julia favors the rings and Nolan the rock wall of course. Last night, Jason encouraged Julia to take me outside and to show me how to slide down the slide. She looked at him with this absolute look of puzzlement, through her arms out making a cross, and yelled, “She’s waaaayyy too big, Dad!” I swear on my life, I am going to go down that slide like a million times this weekend. Little sh**! (As their Great Grandpa Parsons would have said).
Thanks to all of you for checking in and for your continued prayers. Clinic is on Friday, so we’ll post shortly after!
Love to all of you-
Courtney
Sunday, May 15, 2005 6:19 PM CDT
Got some catching up to do I guess. It's been a few. Let's see. Grandpa Roger came in on Thursday and Nolan got to see airplanes-one of his favorite things. He loves to see the airplanes taxi and he squeals so loud. It's really kinda cool. I can only imagine what is going through his head. Friday, Nolan had his clinic visit and his counts were terrific. No need for blood or anything else. It's a wonderful thing :)
He's tolerating the chemo well so far although had very poor leg reflexes (thanks Vincristine) which explains again why he keeps falling down. Although he can't tell us, I know he's not been feeling too great this weekend. He's just been much more whiny and clingy. At one point today, he just cried and cried for an hour and was inconsolable. It was as if HE didn't know what he wanted and what would make him feel better. It's one of those times, that all parents know, when you just go from one thing to the next, trying different things to see what will help.
Nolan has had some terrific bursts of energy off and on, sometimes lasting for a couple of hours and usually having to do with his Grandpa or power tools (see below explanation).
The majority of the weekend has been spent watching Grandpa and Jason building the playset that many of our family chipped in to buy for Nolan and Yaya. It will be great when (if) he is neutropenic again. At least he can play outside and swing, slide, climb, etc. The watching of the building, however, has been quite amusing. My husband, whom I lovingly refer to as "Magellan", has to follow LOTS of complicated directions in order to build a dwelling of sorts that will support up to five neighborhood children. AND Grandpa? OY...
I just know the nightmares are about to start. Maybe I'll take some Tylenol PM tonight.
Actually the set is turning out beautifully and it's quite awesome to see Jason and his dad putting it together for our kids. I will always remember and I'm sure that Grandpa's body won't let him forget! At one point, I went outside just to check in (word to wise women: when men are building something make all visits short, don't weigh in on ANY decisions, and make only positive statements). Anyhoo, I left Nolan inside watching an "EO", i.e. a video, and eating yogurt. I come in MAYBE 3 minutes later to find that Nolan decided he was going to repaint the living room with his purple yogurt...BIG SIGH. Well, at least he's creative and Willie Wanka did have edible wallpaper in HIS house. I mean, what's good for Willie is good enough for us!
Jason and I are looking at a greuling week ahead between work and kids stuff. So, if you include our family in ANY of your prayers, please ask for endurance for us...I know I'm going to need it. I wonder if I'm too young for Gingko?
Thanks again to our family and Carter Lumber for the purchase of the playset. It's already bringing a smile to Nolan's face.
Love to all of you-
Courtney
Tuesday, May 10, 2005 6:13 PM CDT
I am in a funk today, so I'll keep this short so as to not enter into my very own Pity Party...
Nolan is tolerating his chemo very well I think. We had some concerns that his mediport was getting infected, but it does look much better today. He was waaaayyy off balance this weekend and slept/rested more and didn't eat great, but I guess it comes with the territory. We are supplementing his diet more often with Boost. He gives us no problems with the Breeze version.
Otherwise, he's played a lot and has done a lot of the normal two-year-old stuff. In general, he annoyed his sister at every chance he got. He also called her name repeatedly when she left for school. Go figure. He played with a new toy that Grandma Sandi got for him for his birthday and loves it. He practiced the word "NO!" a ton and I'm hoping soon he feels accomplished at it because our time out spot is beginning to have an indention of his butt in it. He's learning new things every day, like, for example, how to unscrew the top off of the tub drain when it's down and then refusing to give it back therefore preventing the water from draining. I wonder...how long standing water has to sit before you have a mosquito infestation. Just kidding...we got the water out after PRYING the top of the drain out of his hands. He is also learning his body parts. Now he can name all of the parts of the face and his lower extremities.
The rest of us are learning too...
Julia has learned to master the art of going as fast as possible on her bike and slamming on her brakes to create the biggest skid mark possible.
Jason has learned that washing a cell phone with the laundry prevents future use of the cell phone.
Me? I've learned that when I say I am going to keep a journal entry "short", what I really mean is that I will journal and attempt to use humor to erradicate my fowl mood and that sometimes it works, sometimes not.
A Great Big Thank You to all of you who continue to support us through kind gestures and words. Immediately coming to mind are Dawn Schippling and her friends, Jennifer and her Blockbuster Crew, Abbie K. and her family (MOM!) and Phil and his Early Friday Meeting folks. In addition, I want to mention Sheryl Johnston and Mary'beth Shelton for on-going prayers and journal entries. These two women are extraordinary Caring Bridge family members who also have their own little girls fighting Wilm's. Please visit their websites and include their little ones in your prayers.
Visit them at www.caringbridge.org/oh/oliviagood
and www.caringbridge.org/nc/bonnieclaire
Sunday, May 8, 2005 5:09 PM CDT
Sorry I haven't updated in a while. Things are moving so fast right now with work, kids, springtime and the holiday. We are all pooped for sure.
Let's see...Nolan went to clinic on Friday. Counts were excellent and he got his actinomyacin and vincristine. He's done pretty darn well this weekend considering. He's been more tired than usual, especially in the morning and his balance was waaaayyy off yesterday. Today, though, his balance is better. The women of the American Legion gave him a Spinoza Bear (which just happened to arrive on his birthday) and he loves it. It's this rather large bear that plays audio tapes that he can snuggle with. You should have seen him lugging that bear around. For REAL, it's just a little shorter than him, but definately rounder but he insisted on carrying it around. It was really cute. Of course, the batteries in our camera ran out so we don't have any pictures yet, but we will!
We were all very disappointed Wednesday night when our "Champion", Scott, was voted off of American Idol. Nevertheless, it won't keep us from playing back the video of him and we will NEVER forget his kindess to us, mere strangers, for whom he made our two kids smile by wearing the "To Life" bracelet. I only wish he could have seen them when they watched him on TV and danced like maniacs when he sang. They also bounced off walls, jumped on furniture and screamed at the top of their lungs. It was a great experience for them- one I know that Yaya, in particular, will never forget.
Speaking of Yaya, that little weister came home Thursday from school and decided she was going to ride her two wheeler and did! It was amazing. If you all could only know that her father and I tried all last year and this (at least when weather permitted) to get her to ride that thing. No amount of bribing, cojoling, or teaching would work. She comes home and bingo, bango she's riding the thing like she was born with it attached to her. She is so proud of herself. We're proud of her too. It's cool to see your kids grow up.
I've heard from many people that my journal entry on Wednesday made them cry and was upsetting to them. Please know that sometimes, when I write, it is almost automatic and that entry in particular came from some other place. Honestly, when I signed off after writing it, I didn't even remember what I had written. It had come from such an emotional place. Anyway, with that said, I have a couple of funny things to start the week off...
True story. It happened to me the night of Nolan's birthday and again emphasizes, for me at least, how darn tired and stressed out I am. You KNOW you're tired when,
You are washing the dinner dishes and get half way through before you realize the plates are PAPER!
A few more funnies that I found on the net and are taken from Squirrel Tales, "You know your the parent of a kid with cancer when..."
1. You carry a tube of Emla in your purse instead of a tube of lipstick.
2. Kids with hair look kind of strange to you.
3. You can sleep anywhere, and anything that reclinces more than 15 degrees looks comfy.
4. You enjoy the drive at 3:00 am to the ER because there aren't any other cars on the freeway.
5. Your child uses legos to build MRI machines.
6. You hear a truck backing up and think the IV is beeping.
7. You ask your CPA if bribe toys are deductible.
8. There are 4 new Mercedes in the doctors' parking lot due to your child's payments.
9. The pharmacy sends your family Christmas presents.
10. Your main source of nutrition comes from aspirin.
11. You make Jello with pedialyte.
12. Every little thing can make you cry in a heartbeat, but this list has you rolling on te floor!
Every one of you keep on laughing and enjoy your week!
Love to you all-
Courtney
Wednesday, May 4, 2005 6:26 PM CDT
Tomorrow is Nolan's 2nd birthday. The arrival of his second birthday brings unbelievably strong emotions. All that he has been through makes it even more special for us. When we celebrated his birthday on Sunday, I couldn't even get through singing "Happy Birthday" as I was hit with a sledgehammer in my stomach again in the typical unexpected fashion. For me, this birthday is a milestone of not just growth and accomplishment, but surviving. Nolan has shown such true spirit through this past year, that I struggle to put into words just what it represents. In that moment when I was hit with that tremendous wave of emotion, I was thinking many things at once...How proud I am of Nolan and how in awe I am of him. I thought about the many people that helped him and us survive- strangers, friends and relatives alike. I thought of Yaya singing happily and loudly and how the joy has seemed to re-enter her spirit recently. I thought of the sadness I still feel that our little boy has to endure something that no one should, let alone a little child. What I realized in that moment, is that I am forever changed. Every experience I have from now on will be colored by this experience. Our family is forever changed.
The past couple of days I have thought a lot about what I wanted to write for this birthday journal and could not seem to find words that even approach what I feel for my son, what I've learned from my son or how I've changed. I would like to write some words to Nolan so that when he reads these journals, when he's older, he has a sense of what we cherish about him every single day...
To Nolan,
Your name literally means Champion and there is no question that you are. Our family nicknamed you "Tank" because you never see barriers only new challenges. These characteristics are the core of your spirit. You can never know the impact that your spirit has had on me, your father, Julia, Poppy, Nana, Mima, Grandma, or Grandpa. I only hope that as you grow, you recognize them in yourself. Because as you do, my brave and strong son, your circle of impact will expand. As it does, I believe, the world will brighten the way ours has because of your spirit. We are grateful every day that we have you in our lives and have been so tremendously blessed to take this journey with you. We can't wait to see what else you have in store for us and are excited about the many years to come. Happy 2nd Birthday, Tank. We love you.
Mommy, Daddy and Julia
Monday, May 2, 2005 3:37 PM CDT
Well, on Saturday we had a little family get together for Nolan’s upcoming birthday (05/05/05). Although Nolan had no energy all weekend as soon as he realized that the party was for him he perked up and had a great time. I think he really enjoyed the company not to mention the attention and the presents and the cake. When we all started to sing happy birthday to him he covered his mouth as if he was saying “ OH my ..For little oh me..you shouldn’t have, but keep it coming”! It was adorable. We all had a good time Julia had her friend Ashley over to keep her company (thanks for the mower Ashley, Nolan loves it)!
I think the partying tuckered the boy out though because he awoke this morning at about 6 am and wanted to take a nap by nine. Woke up an hour ate lunch and then slept for another 3.5 hours. We are hoping his counts are up on Friday so he can get his medicine and we can get one step closer to the end, but we will see. OK that’s about it for now. Thank you again for visiting us, for praying for us, and for helping us.
The Tafts
Thursday, April 28, 2005 4:08 PM CDT
Clinic day today. Nolan did great! He so impresses me when the nurses ask him to do blood pressure and he pushes up his sleeve and sticks out his little arm or when they ask to do his "tubie" and he pushes his shirt up and doesn't flinch when they stick that needle into his chest. He loves filling up the viles for bloodcounts himself and is so cute when he shakes them. I tell you, he is such a "Tank"- although a very cute one.
No need for transfusion today which was terrific as we were prepared for it. His hemoglobin was low, but not in the 8's where he usually gets blood. He is slightly neutropenic, but is monoas 13.5 so he's making neutrophils and should be back up next week. Just in time for chemo.
Anyway, I need to get going, because Nolan really isn't feeling great and is requiring tons of attention today.
Thank you to all of you who continue to check in on us and don't forget to watch Scott Savol on Idol next week. The remaining contestants have asked for "To Life" bracelets too, so maybe we'll be seeing more of them on Idol next week. We are thrilled that Scott did so well this week and that he's continuing on the road to a very successful career. And, of course Patty...what can we say? You're wonderful :) Thank you.
Much love to all of you.
Courtney
Sunday, April 24, 2005 5:52 PM CDT
Ohio. We live in Ohio. Why? Well, so we can have snow storms leaving a foot of snow behind at the end of April! Why wouldn't you like doing spring yard clean up TWICE? Doesn't everyone have multiple chain saws for removing trees just hanging in their garage? Oh yeah, and those of you without a lot of closet space can appreciate storing all your winter gear, taping up the boxes beautifully, only to have to take it all back out the following week. Silly people. Come on! It's great. Stinkin' weather. YUCK!
Okay- enough of my weather commentary. Now on to the important stuff...
Nolan had a pretty quiet weekend.
He is beginning to pale again which is expected. He's very clingy and becoming more and more tired. Also expected this week. We are anticipating a need for Hemoglobin this Thursday and neutropenia. It's easier to expect it sometimes because then I feel prepared. I feel bad for him when his spirit is zapped by this medicine. Today, I walked into the den and saw him attempting to play with one of his favorite toys-a rollercoater/racetrack thing. He would push the car down the rollercoaster and then he would lay down on this soft, bear rug thing that Nanette gave him. He would stay there for just a few seconds, sit up, push the car down, and lay down again. He wants so badly to play, but has to listen to his body. I just stood there looking at my little boy. Thinking how all of my life, I wished to marry the right person and have a little boy. How I cried and cried the day we found out that we were having a little boy. How, I never in a million years, thought I would have a child with a serious illness. How nieve I must have been to think that bad things don't happen to me. How, now, I just pray that bad things don't happen to my little boy. I have to say, I HATE that he has to live like this. It makes me so angry sometimes. On the other hand, I know that is what the chemo is supposed to do and that ultimately it will allow him to live. It is just hard to see.
OHMIGOSH, I'm depressing! Okay, enough of that.
On the other hand, Yaya has had a terrific weekend. She won her third soccer match yesterday (well, okay. They actually tied once). I've learned a lesson about parenting girls from her soccer experience though. Jason and I have raised our daughter to be kind, caring, and polite (even though she does have an ocassional school coupe). This does not work for playing soccer however. To watch her play, one might think she might be better suited for watching a polo match from the stands all dressed up in her best, most rediculous hat, ever so delicately holding a mint julip and raising her voice only slightly with excitement when the divet stomp is announced. Seriously. You should see her. The ball is dribbled down the field by the most skilled first graders I have ever seen and she runs and runs fast to catch up. Fast IS for sure one of her strengths. However, once she comes upon the ball, it is clear that our insistence in good manners comes into conflict with the aggressive nature of soccer because she ALWAYS stops just short of the person dribbling and ever so carefully, moves aside to wait, hoping that the ball will just roll in her direction and the child dribbling will extend his hand to her and gesture in a way that invites sharing. Imagine her confusion. In the car following the soccer game, I say to Julia "You know, honey. When the other players have the ball your job is to run as fast as you can to try to steal the ball from them." Her response? "That's not nice Mom!" (SMACK on my forehead). "I give you permission, Julia. It's the game". Response? Pensive quiet.
Essentially, she is becoming an awesomely polite SPRINTER. Well...maybe next we'll try track. I wonder if they have that for first graders?
Now, for my thank you's for the day...Thank you to the
FOP for their generous and kind donation to Nolan's Fund as well as all of Jason's fellow cops who continue to understand the daily struggle we have with balancing all that we have to do. We are truly grateful to you all.
Thank you, Carole W. for making us two delicious meals this week. The timing was perfect. Our energy is completely zapped right now with Jason being on nights and it was fabulous to be able to have delicious, homemade food at our fingertips.
Thank you, Phil Biondo and the Friday Early Discussion Group. Your on-going cards and prayers continue to surprise and amaze us that people we've never even met take the time to think about our Nolan.
Thank you, Aunt Kathleen. I think of you multiple times a day and remember all of the things you have taught me about strength, compassion, family and laughter (only I keep forgetting the one about not having to thank everyone...oops!) I miss you.
Love to you all.
Thursday, April 21, 2005 2:50 PM CDT
CLEAR CHEST AND KIDNEY TODAY!! YEAH!! What a (if there is such a thing) great Doctors appointment! We were in early bloods drawn right away not wait at radiology (imagine that) when we got back to Oncology they had his blood counts ready and out we went.. Whew. So the Doctor said Nolan is having a "Super" remission. Music to my ears. thats about it for now evereyone is feeling and doing good.
Thanks for reading
Jason
Tuesday, April 19, 2005 4:52 PM CDT
Really not too much to report. Nolan has tolerated chemo really well this time around and has been in a better mood than in the past, no vomiting, not exhausted as much and eating fairly well. We have all been lucky this time around I guess. Nolan goes for scans in two days so everyone think positive thoughts and say a little prayer for the little guy!
Honestly, this working full time in the job I'm in, is really beginning to wear on me. It was hard enough balancing the job I'm in with two kids, let alone everything else now. I have zero patience, no energy and completely lack any humor. I've just about had it.
With all of my whining, I have not forgotten all the positive things people do to help.
Thank You Jennifer Spencer for stuffing blockbuster bags this weekend. It was truly a kind and thoughtless thing to do and we will never forget it!
Thank you all of you who continue to check in, call, buy bracelets. You'll never know what it all means to us. All of this goodness is sure to heal Nolan.
Love to all of you.
Sunday, April 17, 2005 6:38 PM CDT
Today has been stressful and tiring. Nolan is doing pretty good, although a little nausea this morning (of course his father doesn't listen to me when I tell him "ZOFRAN EVERY FOUR HOURS"! That's the way he is. If it's me telling him something, he has to ALSO hear it on the news, from 4 other people, or dream it. No joke. LOLOL.
Yaya worked all day on a "re-invention" for school. She had to take garbage (she used a coffee "can" and lid, plastic Giant Eagle bags, hard marshmallow bunnies from easter, and two popsicle sticks) and made a magic hat that the Bunny mysteriously appears out of. She worked so hard all day. I thought I saw sweat on her brow at one point. She very carefully put it aside to let all the glue dry. A few minutes later a loud "NO NOLAN!" and I ran to find him sitting so quietly on the floor eating the ears off of the only two hard marshmallow bunnies from her project. She was devastated and Nolan was apparently full because he just looked at me and proclaimed "Done!" Yeah, I'd say.
This leads me to a joke that lightened the stress a little today about the spirit of little boys and for sure, our Tank...
a) For those with no children -- this is totally hysterical!
b) For those who already have children past this age, this is hilarious.
c) For those who have children this age, this is not funny.
d) For those who have children nearing this age, this is a warning.
e) For those who have not yet had children, this is birth control.
The following came from an anonymous Mother in Austin, Texas...
Things I've learned from my Boys (honest and not kidding):
1.) A king size waterbed holds enough water to fill a 2000 sq. ft. house 4 inches deep.
2.) If you spray hair spray on dust bunnies and run over them with Roller Blades, they can ignite.
3.) A 3-year old Boy's voice is louder than 200 adults in a crowded restaurant.
4.) If you hook a dog leash over a ceiling fan, the motor is not strong enough to rotate a 42 pound Boy wearing Batman underwear and a Superman cape. It is strong enough, however, if tied to a paint can, to spread paint on all four walls of a 20x20 ft. room.
5.) You should not throw baseballs up when the ceiling fan is on. When using a ceiling fan as a bat, you have to throw the ball up a few times before you get a hit. A ceiling fan can hit a baseball a long way.
6.) The glass in windows (even double-pane) doesn't stop a baseball hit by a ceiling fan.
7.) When you hear the toilet flush and the words "uh oh," it's already too late.
8.) Brake fluid mixed with Clorox makes smoke, and lots of it.
9.) A six-year old Boy can start a fire with a flint rock even though a 36-year old Man says they can only do it in the movies.
10.) Certain LEGOs will pass through the digestive tract of a 4-year old Boy.
11.) Playdough and microwave should not be used in the same sentence.
12.) Super glue is forever.
13.) No matter how much Jell-O you put in a swimming pool you still can't walk on water.
14.) Pool filters do not like Jell-O.
15.) VCRs do not eject "PB & J" sandwiches even though TV commercials show they do.
16.) Garbage bags do not make good parachutes.
17.) Marbles in gas tanks make lots of noise when driving.
18.) You probably DO NOT want to know what that odor is.
19.) Always look in the oven before you turn it on; plastic toys do not like ovens.
20.) The fire department in Loma Linda, CA, has a 5-minute response time.
21.) The spin cycle on the washing machine does not make earthworms dizzy.
22.) It will, however, make cats dizzy.
23.) Cats throw up twice their body weight when dizzy.
24.) 80% of Men who read this will try mixing the Clorox and brake fluid.
25.) Women will pass this on to almost all of their friends, with or without kids.
Little boys are certainly interesting as they discover the world.
I know our Nolan is :)
For those of you interested in something to support other cancer kids out there, visit the following site. You can be an Angel!
www.cancerwarriors.org/angel.shtml
I've seen this on other kids' sites and it's fabulous!
Love to all of you.
Friday, April 15, 2005 6:37 PM CDT
Clinic went GREAT today! The visit was a rather quick one given his counts were bad last week. Nolan's counts were absolutely fantastic! He doubled his neutrophils without any intervention. He got both chemos, vincristine and doxyrubicin, so he'll be getting some extra medicine for the weekend to help him with nausea. His mood is "hot and cold" like any two year old I guess. I am trying not to have any expectations about what the next week will bring because I am just truly grateful that he got his chemo. I will deal with what it should bring (although a little scared). In anticipation, all of you check in this week and leave lots of entries. My sanity just might depend on it!
Anyway, Yaya has gone to the Captain's game tonight and has soccer tomorrow. She is happier and more content by the day it seems. A little story before I sign off...
I was rocking Tank in the rocking chair. He was just beginning to quiet. Julia came over and looked at me, big doe eyes, and I whispered, "whatcha thinkin'?". She whispered back, "I was thinking I might like you to rock me too". I replied, "you can rock with me anytime. Just ask." To which she replied, "really? even when I'm old like 16?"
"Yes, Julia. Even when you're 16".
With pure astonishment, she gasped her reply, "BUT MOM, that's embarassing! The rocking chair is right in front of the WINDOW!"
Hilarious I tell you. Hilarious.
Anyway, it's simply getting rediculous that I keep saying the same things over and over. It seems all I can do.
Thank you, Sara Crump, for the article about the bracelets in the paper and to all of you who called because of it.
Thank you Jill, Karen and Stephanie for getting me through this week. Thank you to all of my Bellefaire family. So many of you support me with your kind words and gestures every day.
Kerry W.- thank you for quietly shutting my office door when I was having a complete meltdown on Thursday and then being brave enough to invite me to lunch!
Nanette- God has put us together. I thank him everyday. You are an Angel.
All our love
Courtney
Thursday, April 14, 2005 6:59 PM CDT
Okay all you praying people out there put one in for Tank tonight and tomorrow morning. He goes to clinic for his counts and, hopefully, chemo. Jason and I realllly want him to get his chemo and not have to skip anymore weeks. We'd also love it if he wouldn't need a transfusion or any other kind of intervention. I'm positive Nolan would feel the same way if he could actually tell us!
Yaya is better. She did have an allergic reaction to her antibiotics, but she has definately turned the corner and is feeling better.
It was kinda cute tonight. I was rocking Nolan (his attitude lately has been stinky so I thought it would calm him down) and Yaya came over with his blanket and glow-worm (Nolan calls this his baby). She covers him up, puts nuk in his mouth and gives him baby. Over his pacifier, Nolan pointed to his ear, said "ow Yaya". She was caring for him and him for her. I tell you, I live for those moments. They keep me going through their pulling hair, fighting over toys, kicking eachother kinda moments.
A GREAT BIG Thank You goes out to Scott Savol and his family. Not only did Scott agree to wear Nolan's bracelet on Idol, the family supported an article in the Plain Dealer about the bracelets! We've already gotten phone calls about them :) It's a wonderful thing. Thank you, particularly, to Patty for being so gracious and a wonderful new friend!
Courtney
Tuesday, April 12, 2005 6:50 PM CDT
A woman by the name of Roxie who runs a Wilm's list serve forwarded this to us. Today, it reflects so well how I'm feeling. I thought I'd make it the journal for the day...
The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you'll
see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be
cracked nor broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That's where parents of children with cancer are more like eggs, than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the
way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered. Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding onto the constantly unraveling ties of your sanity can be very tricky indeed.
Occasionally, the angel will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer will pick themselves up and put themselves back together again.
Monday, April 11, 2005 8:45 PM CDT
Well, what a great weekend!! Saturday Night Was A Blast and I must say what a great bunch of people. So if you were involved with that benefit and are reading this journal… Thanks Betterment Foundation!! So Julia is feeling great and played her first soccer game ever on Saturday and they won!! Go GREEN TEAM (They haven’t come up with a name yet). Not only did she play soccer on Saturday, but actually made it through a full day of school today.. Whew. I hope her illness is over.
Our Nolan is a tiger. This kid I tell you must have all of this energy saved up from a long winter because all he wants to do is go outside and run around. So we are hopeful that his blood counts are going to be up on Friday and we can go on towards the last half of his treatments. So as Courtney would say…Do the Blood Count Prayers.
That’s about is, I have added a second page of pictures (still adding and there will be more soon) To get there you actually have to go through the thank you page (link over the wristband picture) then go to the bottom of the thank you page and there are more pictures. I am working on it and I know everyone wants that pumpkin photo. So Hopefully Wednesday I will get time Thanks for reading and thanks again for all of you great people
Good Night all
Jason
Friday, April 8, 2005 6:04 PM CDT
TGIF. I'm sitting here trying to think of a witty way to encapsulate the last couple of days and I'm so tired I'm wondering if I can even type. It's not a good sign when I can't access my major coping skill- humor. Uh Oh.
Not to be a whiny person, but this week really stunk. Julia continues with fever. She was to the doctor for the 4th time in 10 days yesterday and prescribed her third antibiotic. Jimminy Crickets! (Anyone who knows me can probably hear my voice when they read that because I say it often.) Anyhoo, Yaya ended up missing 4 days of school.
Nolan's clinic visit today didn't go quite as hoped, but it could have been worse. His ANC was .78 so he couldn't get his chemo and that always frightens us. It's hard when you know he needs the medicine and can't get it. It's scary. His lymphocites (sp?) were all wacky so the doctors and such actually had to have a meeting to rule out leukemia. Can you even believe it? His cells appear normal though (thank goodness) and they think the counts are just off because he's fighting what Yaya has. He's been very tired and cranky the last couple of days. We're guessing because his little body is trying to fight off whatever it is.
And to top it all off, with both of them "under the weather"
they are fighting with eachother over everything and just generally being "pains in the..." I considered sending them both to bed, oh, about two hours ago (5:00p) and then reconsidered. I decided to simply hide in the basement for a few minutes. I'm listening for loud thumps, bangs, crashes and what-not.
Tomorrow night is the Betterment Foundation benefit for Nolan. If I were awake, I might be excited. Well, at least I'll have these large bags under my eyes to, oh I don't know, carry my lipstick in. One less thing to have to keep track of that way.
And once again, a great big thank you to Nanette for being the A-1, No. 1 Braceleteer. I'm seeing them everywhere and it's really awesome. And to Jill for again seeing that I got through another week without going into a fugue state.
Love to all of you.
Tuesday, April 5, 2005 5:09 PM CDT
I cannot believe I'm about to utter these words...What a beautiful day in Ohio today! It had to be 70, sunny, beautiful blue skies. Nolan got a chance to really go outside and play today. Of course, with any 2 year old, it wasn't without incident. First, there was the very minor fall from his fire engine when he overestimated his ability to take on a hill in our back yard. The grass stains were relatively easy to clean off his forehead. The other incident, much more comical...
We have a sliding glass door that leads from the den onto the back deck and I have lightweight, floor length curtains that were pulled to each side of it to let today's beautiful sunshine in. The glass door was pushed aside to also allow our house to fill with the wonderfully warm breeze. As the breeze entered the house, the curtains would "parachute" out away from the screen door. Of course, Nolan saw this "parachute" and must have thought, "ooooohhh! That looks like it would be nice and soft to run into!". He took off at TOP speed never considering for a moment that there was a somewhat more solid screen door just behind it. Squeeling with glee he ran through the curtain and flat into the screen door and literally BOUNCED about 2 feet backward. It was an absolute stitch and brought a much needed giggle to Jason and I. Nolan is fine. I'm pretty sure he will think before he leaps next time though. Other than a sore forehead and chest cavity (from the crashes today), Nolan is looking and feeling good.
Yaya, on the other hand, didn't fare as well today. At about 3am she woke me up crying that her ear hurt. In my daze, I got her a warm compress, kissed her, tucked her back into bed and put myself back to bed. At 4:30 she again woke up crying so this time we went the Motrin route. We took her to the doctor at 11:30 and now she has an ear infection. This poor child. She slept a good portion of the rest of the day and is still feeling pretty crappy. Unfortunately, she didn't get to enjoy her day. I'm hoping that tomorrow she starts to feel better.
Thank you again to all of you who check in on us from time to time. We really do rely on all of your "cheerleading". It was great to see the postings from some of our Florida and New York crews. We miss you all so much and wish you were closer.
Love to all of you.
Sunday, April 3, 2005 9:52 AM CDT
Well, we avoided the hospital. YEAH!!!
Yaya continues with this horrible virus/flu/whatever. She still has an ongoing low grade fever but since Friday night hasn't thrown up. Nolan has also run low grade all weekend, but both fevers are manageable with tylenol. Their moods, on the other hand, have not been helped by the tylenol.
Other than that, Jason and I just continue to get through one day at a time.
My cousin, Jason, wrote something in our journal that I
thought was so wonderful, inspiring, and touching that I thought it would be nice to post...We love you Jason for writing it and will think of it often during Nolan's journey.
BATTLE FIELD
I PASS ONTO YOU THIS TALE OF BRAVERY THAT WILL NEVER QUIT
FITTING AN HONOR THAT KNOWS NO BOUNDARIES.
I PASS ONTO YOU A TALE OF VICTORY, A WARRIOR THAT WOULD NOT BE PUT DOWN.
I PASS ON TO YOU A TRAIT OF STRENGTH AND COMPLETE VALOR.
IN LIFE THERE ARE MANY BATTLES AND CONFLICTS OF THE MIND,
STRUGGLES OF WILL, SAGA’S OF THE HEART AND REVOLUTIONS OF THE SPIRIT.
BUT ONE THING WILL ALWAYS HOLD TRUE, VIGILANCE IN THE
UNDYING FIGHT FOR SURVIVAL AND THE POWER OF CONSTITUTION
THAT SHINES BRIGHT LIKE A BEACAN UNFORGOTTEN BY THE AGES.
THOSE WHO ARE STILL FACING COMBAT IN A LIFE OF DESTINY SO IS
AN ODE WITH NO END YOU WILL HEAR THIS NEXT LINE A LEGEND THAT WILL NOT DIE.
IT DOESN’T MATTER HOW YOU HAVE LIVED OR THAT YOU ALMOST DID NOT SURVIVE.
WHAT DOES MATTER IS THAT YOU FOUGHT.
Thursday, March 31, 2005 3:09 PM CST
Here's the low down...
Nolan made it through the night so Jason took him to the Clinic today. Blood counts were acceptable, although .07 away from neutropenia again. We're shocked it dropped so fast in one week. HOWEVER, because he is not yet neutropenic they decided to try to give him intravenous antibiotics and some fluids to attempt to avoid hospitalization. Last temp. at 1p was 101.5. If his temp continues to rise OR he becomes extremely lethargic, back we go.
Yaya woke up this morning with a gushing nose bleed and fever of 102.5. After about 30 minutes, we got the bleed to stop, gave her some tylenol and she felt better. In the meantime, my brain failed me again, and I realized that I had an extremely important report due to the feds by 5p today. Sooooo...I threw Julia in the car (Jason and Nolan were still at the clinic) and started driving to work. We were one block away and Julia's nose started to realllllly bleed again. Took 20 minutes to stop. Once I finished my report, I threw her back in the car and took her to urgent care because her pediatrician's office couldn't see her. We were there for 2 hours as they tried to figure out what in the world is going on with her. The doc suspects she has some kind of infection but doesn't know what. He ran a number of tests and in the meantime, she'll start antibiotics.
I do want to say thank you again to all of you who are selling bracelets. Keep on selling them! We are ordering more because we've just about run out and so many people are still interested in buying them. Lastly, a special thank you to Elise, who continues to be just the most thoughtful person we've NEVER met and who has impeccable timing.
All our love to each of you.
Wednesday, March 30, 2005 6:26 PM CST
Today was a beautiful day. Between what I needed to do for work and house stuff we spent a fair amount of time outside. We really enjoyed the beautiful weather and took some new pictures.
Yaya is beginning to overcome her virus. Her fever has subsided but, boy oh boy is she still CRANKY. I think the fresh air helped her a bit too. Hopefully, she can begin to enjoy her spring break tomorrow.
Nolan, on the other hand, is getting a fever. He was nearing 101 so we called the docs who told us to give him tylenol and retake his temp. at 10p. If it's 101.5 off we go to the hospital. Everyone please, please, please say a big ole stay below 101.5 prayer for him. Either way we'll be taking him to the clinic tomorrow for counts instead of Friday because they want to know what his counts are even he only develops a low grade fever. If he's neutropenic, it's into the hospital we go. Man do I feel like whining right now because I don't want to go.
Thanks for checking in and please say a prayer for Nolan and Yaya tonight.
Courtney
Monday, March 28, 2005 6:55 PM CST
Thank you all for your wishes for a good weekend and, yes, we did get out some. The kids went to our community Easter egg hunt on Saturday and had a ball! It was Nolan's first time that he went and had a concept of what he was doing and Yaya was an Egg finding machine. Sunday they enjoyed a quiet morning and then we set off for Aunty Sally's party at which Julia got a fever of 103.1. I couldn't believe it.
She's still running a high temp and generally feels terrible. I feel bad for her. It's her spring break and she gets sick. YUCK. We're hoping she will get over this soon so she can have some fun.
Nolan just did great this weekend. No vomiting. Still irritable from time to time and his legs continue to bother him, but really, he lived up to his nickname...Tank.
Love to you all and please continue to check in!
Courtney
Friday, March 25, 2005 1:14 PM CST
Sing along..."We're going out to dinner, to dinner, to dinner. We're going out to dinner to have a good time!" Yes, Nolan's counts quadrupled since last week bringing his ANC from .49 to 1.66! Can you believe it? No more neutropenia for now and off we go. I cannot wait to get him out of this house. Wall Mart may have to THROW us out! WBC, hemoglobin and platelets are all beautiful too. PHEW! Nolan got his actinomycin today so I we have about 36 hours before puking possibly commences (that's what happened last time). We will just fill the next 36 hours as much as we can and pray that he doesn't get sick this time. If he does and it was like last time, it's only one day and then off to the outdoors again we go! Can you tell I'm soooo happy? Those of you who left journal entries last night and this morning, they were an incredible help to Jason and I. We cannot express how much the entries encourage us. You all give us something to lean on in your writing. Jill, once again, you coaxed me off the "roof" yesterday and I love you for it (I wasn't REALLY on the roof, don't worry). Thank you and please keep 'em coming!
Love to all of you.
Courtney
Thursday, March 24, 2005 6:36 PM CST
It's been a couple of very busy days. Work is keeping both Jason and I very busy in addition to our kids and we are simply exhausted. I found myself losing track of my thoughts so many times at work today and at one point had to apologize to my team for totally zoning out. They're so wonderful, that of course, they were understanding but I really feel like an idiot sometimes. Not that I've ever been a "rocket scientist" but I could at least form a complete sentence!
I think last night sort of threw me over the edge...I was laying in bed with Nolan who was so cranky and just wanted to be held. I was kissing his head and when I pulled back I had numerous strands of hair in my mouth. It's falling out all over the place and that was JUST IT. "Done!" as Nolan says. I know so many people probably are upset that I just wrote that, but I have to have a place to put it all. So there it is. I wish that Jason and I could just get away, really forget, about all of this sometimes. I know we can't. I know that Nolan will be okay. It's just unbelievably hard to go through. Tomorrow is Nolan's clinic visit and we only hope he's not neutropenic anymore so at least we can go to the grocery store, out to eat, something. We don't need Tahiti. We'll settle for McDonald's.
Julia's spring break starts tomorrow and she's very happy to have a break from school. She's done so well in first grade. I can hardly believe that she only has a few months left. She is growing up too fast and is so wonderful. I got home tonight and she had made a bath all ready for me. "Just the right temperature" she said and was so proud. We really did luck out in the kid department.
Anyway- wish us luck tomorrow. Thanks to the new additions to the "Braceleteers"...Poppy, Barrie, Meg, Abbie and Polly. We are so grateful you're all taking time to sell the bracelets. It means a lot!
Courtney
Tuesday, March 22, 2005 7:08 AM CST
The past couple of days have gone fairly well. No complaints. We're just keeping our fingers crossed that his blood counts are up enough to get his actinomycin on Friday. He's been much more cranky than usual. I think it's a combination of cabin fever and stomach/leg pains from his vincristine. Yesterday, I heard him yelling "bye!" over and over again. I went to see what he was up to and he was standing at the front door with his hat on backwards, earflaps sticking up and his coat on backwards. It was hysterical and I laughed and laughed. It was also a little pitiful. We did go for a brief walk but honestly it's still so cold I don't want him to stay out for long periods of time. I dragged this small slide thing inside from our deck and it's now being housed in our dining area. Nolan and Yaya were quite excited with that idea and spent some time playing on it. We've been lucky so far not to have gotten any fevers and I think it is because we have kept him away from places where people have colds, flu and whatever else. It's terribly hard, but seems worth it. The clinic staff are amazed that he hasn't been back in the hospital yet. We plan on continuing to amaze them!
Remember...Jason and I would be soooo happy if some of you could attend The Betterment Foundation Benefit on April 9th. Please see below for info. and come join us there. We would love to be surrounded by family and friends for this event. Reservations need to be made by March 25th!
The Foundation for Community Betterment presents…
A Night of a Thousand Stars
Walk the Red Carpet in Style at our Second Annual Cleveland Event
Saturday April, 9 2005, 7:30pm
Cleveland Public Theatre-James Levin Theatre
6415 Detroit Avenue Cleveland, OH 44102
Donation: $75/person
Heavy appetizers by Trattoria
Valet parking
Complimentary Bar
Celebrity Attire Encouraged (come as your favorite movie or rock star!)
Grand Raffle includes a trip to Florida at the Lattera Golf and Spa Resort – a PGA Beach Club in St. Augustine, Florida. The golf course is the only joint design of Jack Nicklaus and Arnold Palmer. $5/ticket or $25/6 tickets (no need to be present to win!)
Please visit the website for more information and to reserve your place at the event online at www.bettermentfoundation.org. Or, you can also print the form and mail it in.
For More information, check our web site at www.bettermentfoundation.org, call 216-225-1403, or e-mail stars@bettermentfoundation.org
Sunday, March 20, 2005 4:22 PM CST
Well, the weekend has been pretty good. Yaya got her haircut Saturday and she loves it. Her dad kept telling her how great she looks and finally this morning she said to him in response to his compliment, "yeah. Thanks. Now can we PLEASE move on with the rest of our lives?" She is a real stitch I tell you.
Nolan has even done pretty well. Although more touchy than normal and losing more hair. It's sad seeing your child's hair fall out. Boy or Girl. It's just not natural. However, he's gonna look great and feel even better soon hopefully.
Not too much more to report really. Again, thanks to everyone who has been so kind and especially to the "Braceleteers", Jill, Karen, Nanette, and Paul. Jeff, thanks for the brilliant idea you had about putting the caringbridge site in with the bracelets.
One more important thing...Jason and I would be soooo happy if some of you could attend The Betterment Foundation Benefit on April 9th. Please see below for info. and come join us there. We would love to be surrounded by family and friends for this event. Reservations need to be made by March 25th!
The Foundation for Community Betterment presents…
A Night of a Thousand Stars
Walk the Red Carpet in Style at our Second Annual Cleveland Event
Saturday April, 9 2005, 7:30pm
Cleveland Public Theatre-James Levin Theatre
6415 Detroit Avenue Cleveland, OH 44102
Donation: $75/person
Heavy appetizers by Trattoria
Valet parking
Complimentary Bar
Celebrity Attire Encouraged (come as your favorite movie or rock star!)
Grand Raffle includes a trip to Florida at the Lattera Golf and Spa Resort – a PGA Beach Club in St. Augustine, Florida. The golf course is the only joint design of Jack Nicklaus and Arnold Palmer. $5/ticket or $25/6 tickets (no need to be present to win!)
Please visit the website for more information and to reserve your place at the event online at www.bettermentfoundation.org. Or, you can also print the form and mail it in.
For More information, check our web site at www.bettermentfoundation.org, call 216-225-1403, or e-mail stars@bettermentfoundation.org.
Saturday, March 19, 2005 7:42 AM CST
Well Friday was an ok day. Nolan and myself went to the Clinic to get his treatment. He was in a good mood and loves to play with the digital ear thrmometer. A room full of toys and he plays with that go figure. His blood work indicated good and bad. The good was that his Hemoglobin (what he gets transfusions for) was high, actually in the normal range which we havent been there since this all began. The bad was that his White Cells were very low, .49 absolute neutrophil count, so in short we still cant take him out and they had to forego one of his chemo's because it would drop that count even lower. So he got one yesterday and if the count goes to 1.0 or higher by next Friday he will get the other. I am not going to even attempt to try to spell the names of the chemo's. Thats about it. The nurses said he has "drop foot" which is caused by the "V" named chemo and it is normal, but we should be careful because he cant balance real well, so no rock climbing for a while I guess (hahaha?). Today is relativly warm(40's) so we are going to go get some fresh air in the dirveway to try to cure some of this cabin fever. I dont know if the Mrs.'s has posted anything in the past regarding the betterment foundation, but Nolan is going to be a recipienat
of one of their funraisers so check it out and attend if you can on April 9 here is the link:
www.bettermentfoundation.org
OK thats about it. Oh one more thing. Watch American Idol and watch the contestant Scott Savol..He may have a Nolan wristband on this week or next.. If he doesnt have one on then we all have to vote for him to stay on untill he does, Courtney went to his family's home yesterday and spoke to his sister, who I understand was incredibly nice, who agreed to send him one soo Go Scott LOL
Have a great Day
Jason
Wednesday, March 16, 2005 8:51 AM CST
Things are going pretty well here at the Taft household. Nolan is seeming tired again. I really hope he doesn't need another transfusion. Otherwise, he's been playing and eating well. His sleep is still disturbed from time to time and therefore so is Jason's and mine. I remember Julia having changes in sleep patterns so I'm sure it's typical for his age. His legs don't seem to be bothering him as much so that's good.
As you all know, I started back to work a while ago and have been completely surprised and amazed at the support my agency and co-workers have given us. Our bracelets came in on Monday and when I went into work yesterday, I was so touched by seeing MANY people wearing the green bracelets in support of Nolan and Wilm's kids. I cannot express the emotions that flooded me. The sense of unity is unexplainable.
For those of you who don't know, I work for an agency called Bellefaire JCB. Everyday we all work extremely hard to help children, teens and families experiencing family dysfunction, foster care and adoption, drug/alcohol issues, trauma, mental health issues, etc. I have never been on the receiving end of things. Now, I and my family are. It feels good and helps so much to have so many talented people to guide us through this. Thank you to all of you who have chosen to enter this "marathon" with us. I just adore all of you. For those of you who are not familiar with Bellefaire, please check out the website at www.Bellefairejcb.org.
As you can tell, we are in the process of making changes to our website, so please be patient with us as it takes shape. We really want to taylor it to our needs. We promise that at some point in the near future we will be done tinkering!
Love to all of you.
Courtney
Monday, March 14, 2005 6:40 PM CST
THE BRACELETS ARE IN! THE BRACELETS ARE IN! And they are great. I love the color. To us it represents spring time, things growing, youth. The wording is "To Life" "Alla Vita" L'Chaim" and "A La Vida". Jason and I want to say a special thank you to Nanette, Jill and Karen who are all responsible for them. We feel very blessed to have you all in our lives. All three of you are Angels on Earth.
On another note:
Another good weekend really. Nolan seemed to be feeling pretty well, although Saturday his legs seemed to be bothering him and I don't know if this could be the vincristine or not? Any knowledgable Wilms parent checking in let us know.
YaYa was all about staying home Saturday and just hangin' out. We really had a great day. It's been some time since we've been able to do that. It was nice. A funny story...I had asked Julia to put one of her toys away, which of course she wanted to argue and negotiate. As she was, I asked Nolan to put one of his away at which point he took off to do so. I said to Julia, please put your toy away without whining. Look at how Nolan is putting his toy away, he isn't whining. Julia responded: "He just doesn't know better!" Bad choice on my part but I love her response.
Sunday, YaYa got to go to one of her best friend's houses and I got a nap. I love naps. Thank you Sherry for entertaining her for the day. She just loves your family. Then today, Julia had her big singing debut at school. She led the school in The Star Spangled Banner and is so proud of herself. Jason said at first he thought she might pass out from nerves, but in true YaYa spirit, she pulled off a great show!
As for Nolan, he continues to be "pink" and has been doing a lot of talking. It's so funny. Whenever anyone is having a conversation, he will start jabbering away at the top of his lungs saying nothing meaningful (at least in the English language!).
Nana and Poppy left for a Florida vacation on Saturday (OY!) and so in the spirit of going to the beach, we had a ton of fun with pots of water and all sorts of kitchen utensils. Honest to goodness, this entertained Nolan for hours both Saturday and Sunday and I know his hands were CLEAN!
We're keeping our fingers crossed that Friday's blood counts are back up so that we can again venture into The World.
Check back in the next couple of days. We are trying to overhaul our website to better meet our needs and wants. We have lots of new pictures coming too!
One last thing, although very important. Please add Haley Mathis to all of your prayers. She's another kid with Wilms who is not doing well. You can also visit her site at www.caringbridge.org/ne/haleygirl
Love to all of you.
Courtney
Saturday, March 12, 2005 7:41 AM CST
Yesterday was a pretty good day. Not too much to report really. Our "pinked up" Nolan had fun just running around causing destruction wherever he went. We love it. He ate fairly well although is still pretty picky. He is remains somewhat constipated but the medicine does seem to be helping. I've tried "at home" things, in particular prunes and prune juice, but forget it. Trying to get him to eat or drink prune anything is like trying to get him to solve the national debt.
Yaya came home in a rather grumpy mood and looking a little pale herself. I really hope she's not coming down with something-those are her tell-tale signs.
I wish this weather would break. We all have terrible cabin fever. If it doesn't soon, the whole interior of the house is going to be rearranged and repainted. That darn groundhog! Can't our people in Punxsy do something about this? I'm sure Phil takes bribes of some sort. Come on all of you, next year we expect improvement!
Thanks to all of you who continue to post in our guestbook. Since the initial surgeries, our on-line support has dwindled and we really do rely on it daily to lift our spirits. So all of you visitors out there please post.
Please keep up the "poop" and "eating" prayers for Nolan and don't forget the "To Life" bracelets will be in this week! Thanks to all of the people who are preselling them. We are grateful to you all.
Courtney
Thursday, March 10, 2005 3:33 PM CST
Let me start by saying...THANK GOODNESS FOR BLOOD PRODUCTS! Nolan got his hemoglobin transfusion today and within minutes perked up. It's so amazing to see him bounce back like that and terrific to see his happiness return. I hope everyone remembers this when the Red Cross is looking for donors. We will. The miracle of science. It's amazing.
Of course, the blood doesn't help with his neutropenia but the doctor really believes because he gets to skip this week of chemo that he will begin to bounce back on his own. Many people have been asking me what neutropenia means. In short...chemotherapy effects his bone marrow where white blood cells are made. White blood cells are what fight infection and there is a certain part of the cell called a neutrophil that makes up the white blood cells. When chemo hits the bone marrow it kills off this kind of cell creating neutropenia. At certain levels, below 500, people become high risk for infection. This is often first seen as a fever above 101. So...when Nolan is neutropenic (his count was 400), we have to take precautions not to expose him to others who may be ill. We watch him closely for fever and any other signs of infection. OK. I hope that explanation makes sense because we too are just learning. In fact, you should have witnessed the hilarious seen last night as we all tried to prepare him for wearing a mask to his appointments today. Suffice it to say that Jason, YaYa and I are all conditioned to wearing a mask and Nolan won't have anything to do with it! Some kind of therapist I am :)
The surgeon, Dr. Stallion, was great today. He did a thorough exam, reviewed pictures and the NEW CT results. He and we feel totally confidant that Nolan does not have a hernia. Instead, he has a weakening of his muscles from the surgery that allows his bowel to bulge through when he cries or puts pressure on that area. Nolan has no restrictions as exercise will help him build the muscle back up so that his bowel doesn't create the bulge anymore. Finally. We can rest easy with this explanation because it has some basis in good testing and a good physical exam.
Thanks to all our friends, family, co-workers and internet Wilm's support crew who continue to call and write offering support and guidance. We really rely on all of you. You just cannot imagine how important you all are to us.
Love to you all. Courtney
Wednesday, March 9, 2005 415 pm EST
Afternoon! Well we just got back from the Clinic..again and Nolan had his CT scan. Of course the people that run the machine cant read them!? Or at least thats what they say. So we have no new news regarding the ominus "lump" untill tommorow when we see the Dr. Stallion. He also had his blood checked today and his white blood count is very low so if you have a cold stay away, and his hemoglobin was the lowest w have seen it which he will be getting another transfusion tommorow which will make him feel beter. Other than that nothing really new, although the nurses are going to help me pitch a tent in the lobby so we dont have to do this commute three times this week. Nolan seems to have an appitite and in a better mood this afternoon so I am goingto go take advantage of this moment and go play. take care all and thanks for reading...Even with all my mis-spellings.
Jason
Tuesday, March 8, 2005 2:50 PM CST
OY! It's been a rough couple of days. Nolan has been CRANKY. Not eating well or drinking well for that matter. He's pretty pale and off balance too. I think a transfusion may be just what he needs to perk up.
The clinic called last night. They've talked with Dr. Stallion and showed him the pictures that I took. He agreed that something does not appear to be "right" with the lump and shared our concern. He ordered a CT scan for tomorrow. He will also go for blood work at the clinic so that if he needs a transfusion he can have one Thursday when we go to meet with the Dr. Stallion. No chemo this week. We are so happy about that. Hopefully, his little body will have the chance to bounce back a little now. I'm going to take a half day from work on Thursday so that I can go to the consult. I just want to get this figured out.
Jason and I have been on an emotional rollercoaster this week given that Nolan hasn't been feeling too well. Jason says he just about fully enters into denial and then something pierces it. Soooo Jason.
Ok. For those who keep up on things with us and know that when I get tired I do some pretty mindless stuff. Here's another example from this morning:
Set the stage: Nolan and YaYa sitting at the table beginning breakfast. Mom's desperation for coffee shows on her face. She pulls a coffe cup out of the cabinet and picks up the coffee pot. She begins to poor her coffee. This simple act is obviously too much and she drifts to some far away place with warm, sandy beaches. Instantly, the dream is shattered by a piercing screech, "MOM!" Instantly her mind returns to the kitchen and she realizes that she continues to poor coffee into a well, overfilled cup. Coffee is flowing down the counter, the dishwasher and onto the floor into a substantial puddle. She slowly reaches for a sponge and glances at her daughter who is slowly, deliberately shaking her head. YaYa asks if she can make her own breakfast tomorrow. Mom replies: "Well, yes. If that's what you want to do". No excuses are offered and breakfast continues as if nothing had happened.
Keep us ALL in your thoughts and prayers.
Courtney
Monday, March 7, 2005 7:14 AM CST
Pretty good weekend. Busy. YaYa and I went and returned some birthday presents that didn't fit. She loves shopping! She got some very cute spring outfits and cannot wait until the weather improves. We all have cabin fever at this point.
Nana babysat on Sunday so Jason and I could actually have a date. It's been a long while since we went anywhere on our own. We went to brunch and a movie and had a great time (except for the older woman who sat behind us and had the very strong, distinct smell of moth balls. Our popcorn started tasting like moth balls eventually).
Nolan has been pretty moody this weekend. His sleeping has been interrupted by we don't know what all weekend and his eating has been, at best, mediocre. He continues to be constipated even with the medicine so we will be checking in with the doctor if he doesn't go by 1pm. His color is pale and his balance is off. However, in his good moments, he has had fun. When he's felt good, he run everywhere. He loves to do "the polar express" and run at top speed down our hallway ultimately and purposely crashing into the walls at the end of the hallway. He just laughs and laughs.
That's it for now. Love to you all.
Friday, March 4, 2005 8:09 PM CST
Let's see...it's been a couple of days. It's been busy around here and not much to update all of you on until today. The week has gone fairly well except that Nolan's eating hasn't been great. Not terrible. Not great. His mood has been more poor than usual and his sleeping habits have changed. He was more tired and cranky than usual. He's been more of a handful this week in some ways.
Today was clinic. He did well at his visit and had his chemo. His blood counts were off though. Hemoglobin is dropping again (9.4)so we are looking for the need possibly for a transfusion next week. Additionally, and this is new for us, his white blood count (WBC) has dropped by half over the last week (1.56). Although he is not neutrophenic (sp?) we are advised not to take him to stores, restaurants, etc. We were given masks for anyone who comes to our house who may have a cold, runny nose, etc. Another reminder that he is potentially so...I don't know...at risk. He has also been given a medicicine because the vincristine is beginning to make him constipated. Finally, the on-going "lump" saga...three of the oncologists believe it is a hernia and have referred him for further consultation with another surgeon. Jason will be taking him next Thursday for the consult. We'll see. We like the idea of having something that doesn't require any surgery. We don't know. It just does not look right.
YaYa is well although continues to have nightmares from time to time. She's really excited that her dad is off this weekend and that she is really close to earning another "date" from her jewel jar. She loves that thing. She continues to do well in school and is sweet as ever.
Nolan loves saying his favorite new word- Papa (for Poppy) and Yaya is such a great motivator for him to continue to learn new words. His vocabulary is growing weekly now. I can't wait until he can tell us with words what he is thinking and feeling.
Anyway, I'm rambling.
Again, thanks to all of you who continue to say prayers for us and to all of those who are supporting us in so many ways.
Love to all- Courtney
Tuesday, March 1, 2005 1:41 PM CST
Today has been a pretty good day. Not much to update you with. I did call the Doctors today for som clarification on the "LUMP" which I did not get any. We were told that the matter will not be ignored and they will be able to tell us exactley what it is once they ( the Doctors) all sit down and pow wow I guess. I have an appointment Friday with the oncologist so he can give his opinion. Thats about it. Nolan is in a great mood so I hvae to go play
Jason
As per your request here is the information on the wrist bands:
Re bracelets: I'm hoping to have them soon, but they're not here yet. In the meantime, you can send your checks made out to
Nolan Taft's Fund to:
Nanette Auerhahn
Wellen Center
P.O. Box 22807
Beachwood, OH 44122
Cost: $5 per bracelet and $1 per shipping order. Questions? Call Nanette at 216-320-8341 or e-mail Nanetteca@aol.com
Monday, February 28, 2005 3:43 PM CST
I am sorry, this is Jason updating the website, and I know I am not as a good a writer as Courtney but here I go. For those of you that dont live in the Chagrin Falls area, I thought I would let you know that the Chagrin Valley Times (a local paper) wrote an article about our Nolan with a great photo of Julia nd Nolan, so thanks Chagrin Valley Times, the amount of well wishes we have received from that article has been tremendous!!
So I took Nolan to the surgen today at the Clinic to find more about what this lump is, and he told me that he doesn't think it is a hernia. Good? I guess but he couldn't give me a definitive answer on what it is..Scarr tissue..Bowel..Liver that was his answer he feels that Nolan will "Straighten" out over time as he heals. So looks like no surgery now. Thats about it except for that with all of this fattening Nolan up he is a whip cream addict and asks for ready whip in a bowl with a spoon. Hey it's better then not eating. I am getting a ton of questions about the wrist bands. Yes they are comming and nope I have none yet but I will let you know. Thanks for reading
Jason
Friday, February 25, 2005 4:47 PM CST
NOLAN SHOWS NO SIGN OF CANCER!!!! Shout it from your rooftops! We are elated and Nolan is on the mend from this scary disease. All of his scans were clear and the little bugger did great today. He was very cooperative and calm. His blood counts are all good and he had his two doses of chemo.
PHEWWW!
As for the "swelling" or bulge that grew very large yesterday...it appears he has something called an insisional hernia. What this means is that when he had his original surgeries because he also had, the oncologist believes, radiation at the same time, the radiation caused the incision to not close properly. So the bulge is actually his bowels coming through the hernia. This would explain its apparent getting bigger and smaller throughout the day. The oncologist believes the hernia is "rather large" which is in one way a "good thing". It's good because his bowel is able to move freely back and forth through the opening without it being obstructed (which an obstructed bowel can die). This is good. On the other hand, it probably means surgery to repair it. Jason and Nolan will be seeing the surgeon on Monday to confirm the diagnosis and to discuss surgery options. Oncology would prefer he NOT have the surgery if the bowel is moving freely because of his chemo and immune system. We'll see what the surgeon says.
But for today we CELEBRATE that there is no cancer. Jason and I just might sleep well tonight too. Nolan is living up to his name- he is a CHAMPION. We love him so much.
As for our little YaYa, she is off on her vacation. I am sure she will have a wonderful weekend. We will miss her terribly, but she will benefit being away from all of this surgery talk and chemo side effects for a weekend.
We continue to feel all of your prayers and are so, so grateful for your ongoing love and support.
Love to all of you.
Thursday, February 24, 2005 6:08 PM CST
Tomorrow is a big day. Julia leaves for her vacation with her Uncle Kenny and Aunt Joy. She's got all she needs AND the kitchen sink. She's very excited. Today she went to donuts at dawn and won a raffle. She got to choose between a restaurant and a Spa certificate. She decided on the spa certificate because she said "I wanted to get it for you mom because you deserve it". How cute and sweet is that. The plan is to have a mom and daughter day there getting our nails done with lunch to follow. She likes that idea.
Nolan has his tests tomorrow and we are terrified. Jason and I have been fighting tears all night. His "swelling" on his right side now forms a pretty large bulge that looks very scary. It's hard to believe it could be "just nothing". We are trying desperately to stay calm and rational. The "swelling" simply doubled in size since the last time I saw it last night.
Ok- enough.
Love to you all.
Wednesday, February 23, 2005 1:12 PM CST
Well, Nolan and family are still trucking along. Not much to update you on. Courtney and get more anxious everyday as Friday gets closer, because in case you didn't know, thats the day that he gets a cat scan and ultrasound to see if anything is still growing. I know he will be fine, but it is still nerve racking. Thats about it for now.
Nanette has told us that there have been a lot of inquires about the braceletts and we wanted to clarify something. It's not a dollar per bracelet for shipping it is a dollar per order so all of you that want to order several hundred ata time, the cost for shipping is still a dollar. Thanks again and here is the information regarding them one more time.
Attention all Nolan lovers and Taft family supporters: We now have bracelets available similar to the Lance Armstrong Live Strong yellow bracelets that raise money for cancer research. Ours are lime green and contain wishes for Nolan in four different languages: "To Life, Alla Vita, L'Chaim, and A La Vida." They cost $5 each, with all proceeds going to Nolan for medical expenses. Be the first on your block to get one and the one in our network of friends and family to sell the most to others (Your reward: Watching Nolan get well.) The bracelets will be shipped out the week of March 4. We are taking pre-orders now. To get your bracelet, send your money to:
Nanette Auerhahn
Wellen Center
P. O. Box 22807
Beachwood, OH 44122
Checks should be made out to Nolan's Fund and should include $1 for shipping for each order. If you have any questions, you can e-mail Nanette at Nanetteca@aol.com or call her at 216-320-8341.
Jason
Sunday, February 20, 2005 3:26 PM CST
What a weekend! Nolan did great this weekend and just got spend some time with BOTH Mom and Dad at the same time :)
Julia had a friend over and had lots of fun playing with her. Nolan's spirits, eating, and playing have all been great.
Some things to mention about my friends who have been busy organizing some things...
1) The bracelets are coming! Many of you have been asking so here's the information provided by my friend and co-worker, Nanette: Attention all Nolan lovers and Taft family supporters: We now have bracelets available similar to the Lance Armstrong Live Strong yellow bracelets that raise money for cancer research. Ours are lime green and contain wishes for Nolan in four different languages: "To Life, Alla Vita, L'Chaim, and A La Vida." They cost $5 each, with all proceeds going to Nolan for medical expenses. Be the first on your block to get one and the one in our network of friends and family to sell the most to others (Your reward: Watching Nolan get well.) The bracelets will be shipped out the week of March 4. We are taking pre-orders now. To get your bracelet, send your money to:
Nanette Auerhahn
Wellen Center
P. O. Box 22807
Beachwood, OH 44122
Checks should be made out to Nolan's Fund and should include $1 for shipping. If you have any questions, you can e-mail Nanette at Nanetteca@aol.com or call her at 216-320-8341.
2)My other girlfriend, Karen, and her husband, Rob, advocated for a foundation to honor us as one of their primary recipients of their annual fundraiser on April 9th. They chose Nolan so all of you please visit their website at www.bettermentfoundation.org
I don't even know what to say except that Nolan, Julia, Jason and I are so blessed to have all of you in our lives.
Continue to keep him in your prayers.
Love to you all
Friday, February 18, 2005 6:25 PM CST
Julia and Nolan went together to his clinic visit today and he tolerated everything beautifully. We think it's because YaYa was there. His levels were all good and he gained a pound! Yippee! I have to say Jason and I are now probably the world's foremost experts on dietary habits of a 20 month old chemo patient...
On another side of the coin, Jason talked to the clinic today about the "swelling" on Nolan's right side. They saw it, felt it and here's what they said...There is no obvious feeling of a mass like the tumor. There was mention of the possibility of a bowel obstruction again. However, he has no symptoms. So basically, next Friday, will be very telling. The swelling is nowhere near as drastic as in the original tumor and Jason and I are still holding out hope that it is just fat depositing itself in the area where his muscles were effected by the first and second surgeries. As many times as I tell myself it's nothing, I also fear the worst. We are trying desperately to think positively.
All of you avid Nolan page readers keep on praying for him!
Love to you all.
Thursday, February 17, 2005 6:33 PM CST
One more good day under our belts. Nolan is doing really well and having little to no side effects from his chemo last friday. Tomorrow's treatment is the same as last week so hopefully we'll have another good week to look forward to. Jason and I are both starting to get really nervous about the upcoming scans to determine if there's any new tumor growth, but trying really hard to stay on all of the positive things in each day. Every once in a while, without warning, a wave of fear/sadness will come over one or the other and it takes a while to regain our composure and focus.
Anyway, Julia is doing well and looking forward to her trip to her Uncle Kenny and Aunt Joy's house. Her PA family is going to give her a "princess party". She's very excited.
Love to you all.
p.s. the Harley Nolan is riding on in the new pictures was a present from Mema. He loves to just sit on it and tinker. Such a man!
Tuesday, February 15, 2005 6:31 PM CST
Another good day under our belt. Nolan's belly seemed to go down today so I didnt call the Doctor, Probobly just like his dads belly gets bloted. He was a ball of energy and I am exhausted. I cant wait to go back to work tomorrow just to relax. Maria from the Kids Club (NOLANS DAYCARE) brought by a ton of valentines cards that all the kids made for Nolan, and he really seemed to enjoy them, so all you Kids Club People out there a big THANK YOU!!
Thats it for now.. Courtney is on Nolan duty Tomorrow.
Jason
Monday, February 14, 2005 6:53 PM CST
Julia's birthday went off without a hitch and in her words was "the best party EVER!" Pictures to follow tomorrow. We all had a great time and mom even got on ice skates again. All of her friends were wonderful and Julia had fun with each of them.
Nolan is doing well... eating, playing, etc. We noticed that his belly seems enlarged tonight on the side the original large tumor was on, so we're being bothered by it and have decided to call the doctor tomorrow if it looks the same in the morning. We're hoping it's gas or something. (I cannot believe I just wrote that-the things that parents have to think and say!)
We got an absolutely surprising and wonderful gift today from Washington U! The students there participated in a fund raiser (thanks to Elise W.) and sent us a donation for his fund as well as a card. Both of us really loved all of the well wishes on the card, in particular, the comment- "When you feel better [Nolan], stand up and shout, "I'M HERE!" This is in the true Nolan spirit. We are so energized by those comments. Thanks to all of you at Wash. U. Somehow the youthful energy came through in the card. It was great. Keep Nolan in your thoughts and continue to send that energy his way.
Anyway, Love to all of you.
Monday, February 14, 2005 7:42 AM CST
Good morning. Hope everyone had a good weekend. Nolan is doing very well. He is eating like a champ, or his father I dont know which one eats more. He has a horse voice, but no fever or signs of anything else so we will just watch him. I appreciate all of the birthday wishes, thank you. Yesterday we had Julia's party at the ice skating rink, and I was in charge of the camera so no you won't catch any photos of me on those darn things. Thats about it. My mother is leaving today, so we will have to get back to not having a built in babysitter. It was nice having a helping hand around... Thanks mom!! Well, thats about it for now...Judy we are praying for a speedy recovery for you!!
Jason
Saturday, February 12, 2005 8:51 AM CST
Well, yesterday was Nolan's clinic visit. It was a good and short one. Blood work looked good with hemoglobin rebounding quite nicely since the transfusion last week. He lost weight, 1 lb., which wasn't surprising at all, but the staff was not overly concerned because he looked so good. His "tank" spirit (poppy named him this when he was a couple of months old because of his fiestiness and voracity for eating) has been in him for the past couple of days so he is eating better and definately playing much more.
Julia's birthday party is tomorrow and she is getting really excited. She also lost a front tooth- soooo cute. Julia has also decided that she wants to take a vacation to her Uncle Kenny's house in Pennsylvania...one that he offered back in December but which she is ready for now. So we'll be planning that soon. She can really use a good vacation and loves going there to see her Uncle Kenny, Aunt Joy, Aunt Kathleen and Uncle Dave.
Love to you all.
Thursday, February 10, 2005 8:19 AM CST
Wow what a busy few days, so I apologize to all you Nolan junkies that haven't been able to get their fix. Well, his eating has increased over the past several days, this morning he was very hungry. Its good, because as he eats more he has more energy so he is tearing around the house (I think thats good haha) Julia and I had wonderful birthdays, and we both thank everyone that wished us happy b-days. Julia's big party is on Sunday and we are going Ice Skating, and I have promised that I will get on a pair of skates. Courtney said she will be watching me with camera in hand. Well not much more to report today. Tomorrow he has his chemo so we will update when we get home.
Jason
Monday, February 7, 2005 5:59 PM CST
OK. Today was a little better, however still challenging for Nolan and for all of us. He ate only a tiny bit and drank nothing other than a a 2ml dropper full of juice. We did manage to get about 1 1/2 popsicles in him though so that definately helped with his fluid intake. He slept far more than typical today, but when not sleeping he ran around more and played a lot more. We're hoping this alone is a sign that he has begun to feel better.
For a funny picture, imagine this...three grown adults sitting on the floor in a semicircle in front of the refrigerator with one very small child in the middle. Each item in the refrigerator is carefully removed one by one, with the small child saying "mmmmmm" but then when the item is presented he says "Done!" The three adults sigh in unison, moving on with trepidation to the next jar and the next and finally reach the final jar, marashino cherries, only to be met with utter defeat. The child slowly closes the refrigerator door leaving the burnt out lightbulb behind and slowly shaking his head...DONE. Pitiful. One cop, One smart Grandma, and One college educated mother left only to ponder what other foods could possibly exist in the universe.
Peace in eating to all of you.
Sunday, February 6, 2005 6:12 PM CST
PHEW!!! Rough day. Nolan was really not himself today-not even irritable. He was very lethargic, refusing to really eat or drink and vomited. We are all pretty stressed out about it because we just don't ever really know what to expect. Is it a virus? Chemo? Bowel obstruction? Who knows? This has been the toughest day emotionally since just before his last hospitalization. We are all tired. I, for one, am scared again. This is very difficult. It's hard to see someone so little struggling so much and not being able to do much to help him. The rest of the night, I am going to try to think more positively and pull myself out of this and add an extra prayer in.
Love to you all.
Sunday, February 6, 2005 6:31 AM CST
Saturday's update late...the day went fine, just busy. Nolan looks soooo much better since his transfusion and was even "talking" way more. I took he and Ya-Ya to pick up Grandma Sandi at the airport and both loved to see the airplanes-especially Nolan. He squeeled loudly each time one taxied. Grandma arrived safe and sound and Julia got a autograph from Lou Rawls! She doesn't know who on earth he is, but she was excited none-the-less. Julia is feeling much better as well and tried to get me to let her stop taking her antibiotic yesterday because she hates the taste of it. She was very disappointed to find out that you have to complete the whole course of an antibiotic :(
Elise- I am posting two pictures for you. I hope it's not too late. You're very sweet to involve your school like this. The apple really does not fall from the tree I guess. You and your mom are amazing people.
Love to you all.
Friday, February 4, 2005 5:49 PM EST
OK first of all I want to apologize about the update yesterday. I did make one but I dont know where it went (honest).
Well today has been a loooooong day for Nolan and Courtney. It is now 5:50pm and they are still at the doctors since 9 am this morning. Nolan's blood work came back that his hemoglobin (red blood Cells) were low so they decided to transfuse him. So that with the two chemo's today caused for a long day for the both of them. Shes not home yet, but Court says that Nolan is much happier now than this morning so that is good. Every time I spoke to them today someone was in the room with them blowing bubbles and trying to make him (and maybe her) smile. Thank God for Nurses!! Courtney said that so many bubbles were blown that floor became a hazard to walk on due to all of the "Suds". So I am going to go cook dinner sorry about the update being so short but it takes time to cook a gourmet Grilled Cheese so I must go. We will try to post some more photos over the weekend. Thank you all for reading
Jason
Wednesday, February 2, 2005 5:20 PM CST
Okay so we have to do a two day update tonight...let's start with yesterday. Fairly decent morning, although Nolan really seemed wiped out at first. Then he took a nice long nap and woke up in better spirits but with a slight fever. When Ya-Ya got home from school she was complaining of an earache and her mood was horrible. Jason left and took her to the urgent care and Nolan's fever spiked. With that said, Julia has an ear infection and Nolan maintained a fever over night. Jason and I monitored him through the night every two to three hours and his fever lowered two degrees on its own. Julia woke this morning feeling much better and chose to go to school. Nolan's mood was good and he was pretty active, but he still had a slight fever all day. We continue to keep a close eye on both of them- although at this point it's more like one eye. Ya-Ya feels MUCH better. Thank goodness for antibiotics.
Love to all of you.
Monday, January 31, 2005 7:49 PM CST
OK well its Dad again. The Mrs. went to work for the day so I was cheif cook and bottle washer today. Well I guess he's feeling better because if he could reach it he was pulling it on to the ground and dad was putting it back..all ...day ... long. But it's good to see him playing. He and Julia got to go sleding in our back yard this afternoon and they had fun. Of course if you can see his hands in the photos I couldn't find any gloves so he has two pairs of Julias Pink Disney socks on his hands as mittens. His appetite wasn't the best today but I guess we will have days like that. So nothing else to report I havent even had time to get feedback from the Mrs. on how it was going back to work today, so dont ask me cause I dont know. Talk to you all soon.
Jason
Sunday, January 30, 2005 3:12 PM CST
Nolan has had a pretty good weekend. He seemed more tired than the norm, but still he was playful and inquisitive. We must have found him playing in the dog bowl about 10 times this weekend. Both kids had a PJ/hang out day and seemed to have a lot of fun. Julia sent out her invitations for her birthday party today and she's really excited.
I start back to work tomorrow which leaves me feeling both excited and worried. I'm sure once I get out and to work, though, I will feel much more myself. Wish me luck!
We hope you enjoy the new pictures of Nolan doing what little brothers do...making their big sisters laugh and generally annoying her all at the same time.
Love to you all.
Friday, January 28, 2005 4:49 PM CST
Great News! Nolan gained two pounds! YIPPEEEEEE! (Maybe this should be a warning about ice cubes and black olives.)His blood levels are all acceptable right now although again his hemoglobin dropped- this time from 10.something to 9.2. What this means is we just have to monitor him for being lethargic, bruising easily, poor appetite (can you imagine?), irritability (really). His hemoglobin dropped to 8.something following his second surgery and he got a transfusion. We don't think this will be necessary, we just need to watch for warning signs. In addition, his platelette count climbed up a little (from 470 to 590), but we don't really need to do anything for it and if it got really high (like when he was 1 million prior to second surgery), he gets 1/2 an aspirin a day.
Nolan started out his "clinic day" in good spirits and his mood has persisted all day. He seems to really be adjusting to the clinic environment and has come to respond to one nurse in particular, Viva, with a relatively calm affect. When he sees her there he just sort of calms. It's not only comforting to him, but to us all. He has even made one little friend there-Nora. Those at the clinic are becoming very familiar to all of us since we are seeing them so often. Viva, Holly, Tom and Linda are becoming incredibly important to us. This difficult situation seems more managable with this crew from the Clinic. We just want to
say "thanks" to them.
As for our little "Ya-Ya", she's doing well. She was supposed to be going skiing today, but because we live in the Arctic for goodness sake, it was too cold and she couldn't go. Other than that, she is doing well. We started a "jewel" jar that really seems to be helping. For expressing her feelings with appropriate words (written or spoken) she gets to take a jewel out of the mom and dad jewel jar and put it in hers. Once its full, she gets to go on an excursion of her choice with mom, dad or both. She absolutely loves this and it has been working great. Her jar is getting pretty full and as it does, I begin to hear the faint sound of really bad seventies and eighties music in my head because I know a day of roller skating is fast approaching. REO Speedwagon anyone?
Love to you all.
Thursday, January 27, 2005 5:53 PM CST
Exhausting night last night. Nolan did not sleep, merely cried most of the night. Nolan ate fairly well this morning and then very little the rest of the day. We are going to keep this short and without wit tonight. Love to you all.
Wednesday, January 26, 2005 4:12 PM CST
OK folks it's me again (Jason) so bare with the wording and the content. What a great day. Mr. Nolan was running around the house like a crazy person today and even climbed the stairs for the first time since the operation. Now we just have to worry bout him cracking his skull open. His eating, although better still leaves allot to be desired, but if its in the house we have attempted to shove it down his throat. Now I know when he becomes a teenager he will be four hundred pounds and hold it against us because we started these eating habbits but we will deal with that problem when we get there. So thats about it for today the rest of them family is great and Julia says hi to everyone.
Thanks for reading,
Jason
Tuesday, January 25, 2005 6:47 PM CST
Today we decided to take Nolan out for breakfast and to do a little shopping. As we pulled out of the driveway (I was driving) I realized I forgot my shoes! This should tell you where my head is given that it was a blizzard here two days ago and the high today was in the 20's. Anyway, we took Nolan to Bob Evans (Julia's fav.) and guess what he ate even though we ordered him all kinds of scrumptious food...guess...
ice cubes. Yes. This will really pack on the pounds. He did put a couple of pieces of sausage in his mouth, but then he spit them all out. For Goodness Sake. Oh well. We tried.
On our outing, though, he did have fun.
On-going thanks to all of you who have been helping us out (maybe we could use someone here in the mornings to make sure I leave the house fully and appropriately dressed).
We love you all.
Courtney
Monday, January 24, 2005 5:17 PM CST
Today's surgery follow-up appointment went fine. Of course, if you ask Jason he'll tell you... it was a 30 minute drive, 25 minute hunt for a parking spot, 5 minute walk to the office, 30 minutes in the waiting room that was filled with the aroma of someone's very dirty diaper (he wasn't sure if it was a result of this one small child or the elderly woman that was watching him), 15 more minutes in the exam room waiting, and 5 minutes with the doctor.
Nolan is healing well. We were warned to be aware that in rare cases the diaghram patch becomes loose and that if that were to happen it would require another surgery for a repair. Lovely. However, it is rare and he will know if it's slipping when Nolan has his full body scan in a couple of weeks.
He still isn't eating well so we continue with our "please gain weight prayer". I hope all of you continue to include Nolan in your prayers too.
Sunday, January 23, 2005 4:19 PM CST
Today was a good day. Nolan's spirits are high and we enjoyed our day playing, listening to music and dancing. Of course, there was the Elmo video or two. Nolan still did not eat great, but I stopped at the store and stocked up on some things I'm hoping will inspire a voracious appetite. Nana came to babysit while Jason slept and I went to lunch with a friend. Julia got some one on one time with her Nana which she loved. Our friends in the neighborhood and elsewhere in the community continue to support us through cards, phone calls, food and all kinds of well wishes (thanks Jill for the calming body wash and candle and beer for Jason) We continue to feel very grateful. We're still working on wording for the bracelets, but I feel we're getting close.
Love to you all. Courtney
Saturday, January 22, 2005 5:52 PM CST
Nolan was a litte out of sorts today, but overall okay. Just cranky and at this point it's become contagious. Anyway, he had a decent eating day although not great. We'll just keep at it.
Jen thanks for the Ovaltine suggestion! We'll try it! The little stinker won't eat Carnation.
We're all pretty worn out tonight, so I'm going to keep this short. Keep doing the "gaining weight" prayer (for Nolan only please).
Love to you all.
Friday, January 21, 2005 6:10 PM CST
Friday Clinic update. Nolan's levels were all within normal range and they went ahead with Chemo. He tolerated his visit well and seems to be adjusting to the routine of it all. His hemoglobin was on the lower end, but no intervention is necessary at this point. We decided to cancel the physical therapy appointment and avoid another doctor bill since he made so much progress this week. He even impressed us all a little tonight when he walked backward for us. We clapped so loud and he just beamed with pride.
As for concerns, Nolan went from about 22.7 lbs. to 20.5 lbs this week. The doctor wanted to insert a feeding tube through his nose into his stomach that we would have to give him nourishment through once a day. However, after some discussion with Jason, they agreed to wait one more week and see if he gains weight. It's so frustrating and scary since we thought he was doing a better job eating. We are going to try every concotion of pediasure and whatever mix we can. He's not going for it in a shake so we're gonna try to mix some chocolate into it or something. We are desperately hoping he will gain weight before this next visit.
So from the "eating prayer" to the "poop prayer" to the "gaining weight" prayer we go. All of you out there, put a good word in for the little guy with the "Big Guy" above. Thanks to you all.
Thursday, January 20, 2005 6:35 PM CST
Another decent day although I now have the flu. Nolan did more walking today and we really couldn't be happier. Julia is also doing great and got chosen by her music teacher to sing the a song for her whole school in March. She is thrilled and so are we. She is beginning to return to her "status quo". PHEW!
We are going to be having bracelets (similar to the Lance Armstrong, "livestrong" bracelets) made as a fund raiser for Nolan's care. Since all of you have been with us on this journey, if anyone has any suggestions, let us know. We can choose up to a couple words as well as the color. Don't be shy...We'll keep you all updated when we have made a decision and when they will be shipped.
Before I sign off to go crawl into my bed and dose myself with some cold medicine, I again want to say thank you to the friends who continue to support us through calls, prayers, e-mails, journals, cards, donations, dinners and such. It is so so so meaningful to us and continues to allow us to focus our energies on both of our kids. I know they appreciate it too.
Wednesday, January 19, 2005 4:15 PM CST
Nolan continues to get stronger. He started walking this afternoon and has rediscovered all of the things he used to take apart, hide, and/or throw around the house. We will soon all be looking for our shoes again soon hopefully (as he loves to put them in the most unusual places). This journey that started December 14th has inspired us to do a little research on Nolan's name and the meaning it carries. What we found is not only interesting (to us at least), but also inspires us to grow. We thought we'd share a little of what we discovered.
In Gaelic history, the name Nolan is one of a warrior and is represented by the wolf. Anyone who knows us (or has seen any artwork in our home) knows that a beautiful painting of two wolves surrounded by four wolves sits above our fireplace (thank you Nana and Poppy) and that the Wolf carries alot of meaning in different cultures and in particular, Native American. Specifically, the Wolf (and the Raven) prevails in the winter as it is led by the star Sirius, the brightest star in the Northern Sky. The Wolf is the forerunner of new ideas and who returns to his clan to teach and share medicine. Wolf is both radical and traditional in the same breath. It was the Wolf who taught us how to form community upon this Earth, for Wolves have an intuitive knowledge of order through chaos and they possess the ability to survive change, intact. Wolf medicine is very ancient and born of living experience. Wolf looks deep into your heart and shares the greatest of knowledge, demands full participation, and absolute sincerity. When Wolf walks by you, memories within your soul are rekindled. Through the friction of experience you question your own consciousness. You come to know that you can own a thing only when you have come to own the emotional experience of it and realize the responsibility for its creation. Only then are you free to continue. Wolf medicine makes you whole.
(Taken from Ghost Wolf; The Wolf Lodge)
Jason and I believe that all things in nature have a purpose and that we can learn from each thing. We believe that if we are astute enough we can grow from all things that face us.
We are intigued by this newly learned information and just wanted to share with all of you because we are growing from this unbelievable journey during which Nolan is our guide and who brought such great lessons with him. We hope that you share this with a loved one and that you come to find some personal meaning.
Tuesday, January 18, 2005 4:19 PM CST
Just a quick update. Due to the snowstorm yesterday, we did not go to the surgery follow-up. We didn't think a car accident right now would have done any good. However, Tank continues to do well and everyday he has a little more spark than the previous day. He's cruising more so maybe the physical therapy consult this Friday won't be necessary. He's playing more and more and his laughter is again filling our ears. Just the sight of Poppy makes him laugh (as it does for the rest of us)! His hair is starting to fall out so now he has these nickle/dime size bare spots on his head-another reminder of the reality of this. However, I hope that it is some kind of indication that the cancer is also being taken care of. I guess we're on the road we are meant to be on right now and it doesn't seem to be too bumpy. For this we are grateful.
Love to you all
Monday, January 17, 2005 6:33 PM CST
Today was a pretty good day. Nolan was crankier than normal this afternoon, but all-in-all better and we'll take it. He's just overall looking better, smiling more, "talking" more and even doing a teeny bit of walking. We are beginning to be in a routine that now both Julia and Nolan are starting to know and trust. This, in itself, is really a big thing. Slowly, Jason and I are becoming more sane (or for those who really know us and who we can't kid, we are retuning to our baseline). We are beginning to trust that Nolan will beat this thing. I pray everytime I see him resting quietly, laughing at his sister, or throwing something at his father that his progress continues and that he remains strong.
I promised pictures and they are coming. Our batteries in our camera died so they're recharging. I can't wait for all of you to see how much improved he looks...tomorrow.
Sunday, January 16, 2005 3:42 PM CST
It's been two days since the chemo and Nolan is doing beautifully. He's playful and even doing a little furniture cruising. His Great Aunt, Donna, babysat him last night so that Jason and I could go out to dinner. He did a very good job with her and wasn't too difficult at all. He hasn't vomited once although his eating habits are still not so great. He does LOVE pizza which we ordered last night and he at almost two whole pieces. That was wonderful. I can honestly say that half of our day is spent offering Nolan different foods, drinks, shakes, etc. hoping that something will appeal to him. Every once in a while we get a "hit"-like the pizza.
We'll be taking some pictures tomorrow so everyone can see his weight gain and the return of his "spirit". It's obvious that the joint prayers and thoughts are helping our little one get stronger every day.
Love to you all- The Tafts
Friday, January 14, 2005 2:56 PM CST
PHEW! What a day. Nolan, Julia, me and Mimaw all went to the clinic today. Nolan was an absolute trooper given that we were there from 10am to 2:30p. HE IS GROWING INTO HIS EARS! All his blood levels were great, he put on 1.2lbs., and handled the procedures well. He'll be getting some medicine to help him avoid the nausea and vomiting that accomponies one (doxyrubicin) of the two chemo's he got today. We're really hoping it works so he can keep putting on some weight. Nolan will begin to see a physical therapist next friday so that they can begin to help him walk again. We're not sure why he isn't, but we'll get him back on his feet soon hopefully! Julia got to spend some time talking with a child life specialist and learning all about Nolan's treatment there and met all the doctors and nurses. She really enjoyed herself, although was somewhat sad/angry/scared from time to time. We did some really good talking on the way home and I found out she has some fears about getting sick (although she says Nolan isn't sick, he has a tumor...sick is like the flu she says) and about Nolan dying. We talked a lot about these things though and she is doing great at feeling like she can talk about these issues. The book that my one friends/co-worker made really helps with all of these feelings. Thanks to all of you for supporting Julia too.
So far, a really good day filled with hope.
Merci (French?) to all of you.
Thursday, January 13, 2005 6:53 PM CST
Really fine day...although continuing to be "hot/cold" in terms of his behaviors. Nolan walked a little, crawled a little, talked a little, and ate a lot. Jason and I think he is beginning to put on some weight (his head is growing into his ears a little). We'll find out tomorrow when we go to Nolan's appointment if he did or not. Nolan's color has improved some and so I am hoping his blood counts are still within the acceptable range. All of you who don't know, "Nolan" is Gaelic meaning "Noble Champion". I remember this everyday when I think about each little hurdle he overcomes and each little step he takes toward his true spirit and away from this disease overcoming him. Whatever tomorrow brings, we will get through it with the energy you are all bringing our way.
Hooray for a good day!
Wednesday, January 12, 2005 4:00 PM CST
Today has been a pretty good day. Although we think he has a stomach ache from time to time which makes him pretty cranky, in between those times, Nolan has been playing. He particularly enjoys sticking his finger in our ears. For whatever reason this just cracks him up. The things we do to make our kids laugh...
Tank didn't eat much today and seemed tired a good part of the day, but the temperature outside was so nice that I got to take him for a stroller ride. This seemed to energize him. I know this because when we had to come home to meet Julia's bus, he got so mad and it was clear that he had some energy!
He and we have adapted to his haircut at this point and we agree with all of you that he looks "dashing" (the word of one of my friends).
Anyway, I am so astonished at the list of people who have signed on to journal. It's just wonderful and we are all feeling all of your energy and prayers.
Love to you all
Tuesday, January 11, 2005 4:17 PM CST
OK. Courtney has kept me away from the journal because she says I cant spell, I say it's Type O's. Any how here I am entrusted to inform the world what is new in the life of Mr. Nolan. He had a pretty good day. He was a little cranky for most of the day but he did eat very well and played with his toys a whole bunch. He also started walking a little more, which we are very excited about. So it seems that every day we see a little more of the boy coming (one m or two?) back. Courtney actually is getting a break tonight and is going out to dinner with some friends, so she will be back to journaling tommorow. Thanks for bearing with me through my attempt to spell things correcct...corect...right!
Jason
Monday, January 10, 2005 4:29 PM CST
We passed our five day mark...yippee. Today is a milestone for us and we are happy. Nolan's day was a bit difficult. He just doesn't feel well often and does what we all do when we don't feel good-wine, cry, and cannot make a decision (up, down, touch me, don't touch me, etc.). He hasn't eaten much again, but is drinking enough fluids. You'll notice in the new pictures that we decided to avoid the drama of having his hair fall out into his soup (so to speak) so he had a haircut today- a whole other drama of it's own. I'm sure the lady at Best Cuts thinks I'm totally nuts for crying when she asked me "are we just doing a trim today?" Luckily they had some paper towels. Anyway...I was never big on tatoos, but I am considering a great, big "Thank You" for my forehead because I am saying it so often to everyone and the words just don't express the gratitude we all feel for everyone's kindness. Maybe I'll just try some new languages...
Gracias to you all.
Sunday, January 9, 2005 4:46 PM CST
Day 5!!! Yeah. No vomiting and all seems ok. I hope I didn't just jinx the little guy. This morning he ate well and played well. He even did a little walking. We are all so happy about that. This afternoon though he is much more irritable and refusing all foods. We tried everything to no avail. Maybe later. A Julia story from dinner tonight. Set the stage: Nolan was not so happy and was pretty disruptive, making dinner stressful and unenjoyable (although Jill's dish that she brought was very tasty). During dinner, Julia began crying loudly and finally told us what happened. We think she got a "burner" (all of you have had these I'm sure. You know, a sharp, red-hot flash of pain that sometimes goes up your neck to your head). Anyway, I said: "burners are a pain in the neck". Julia said: "kinda like a pain in the 'abs'(meant a**) like Nolan?" It was very funny. We all laughed and the tension sort of melted away. We love our little comedian Julia. Anyway...
Grandma Sandi found this somewhere and I thought I'd share-
Cancer is so limited...
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit.
For now, love to you all.
Author Unknown
Saturday, January 8, 2005 5:12 PM CST
Hi all...a brief update for the day. Nolan's day was so,so. He hasn't felt quite as well today and since he can't really tell us what's bothering him, it's kind of a mystery. It could be his chemo we guess. He didn't eat much today which is always worrisome and he is much more "sensitive" today. He's done more moaning, whining, crying than normal. That's not to say though that he didn't play at all and this morning he did a kind of half crawl, half scooch from the back of the house to the bedrooms. We do have a small house, but it was the most he's traveled on his own in weeks. Baby steps so to speak.
On the other hand, Julia, her friend Ashley and I went roller skating while Nana watched Nolan for a few hours. Julia had a ton of fun and I just looked like a complete fool I'm sure. It did feel good to have a little fun though.
Our neighbors are just becoming aware of Nolan's illness and they have started to call and offer help. Polly brought us some wonderful looking Chili and Karen a loaf of homemade wheat, honey, banana bread. (I wonder if any of them are personal trainers?) Although in the beginning none of us had an appetite to eat anything, with the delicious food people are bringing by we will either need personal trainers or expandable pants! We are so appreciative because our days continue to be extremely busy and stressful. Thanks to those of you have helped in this way.
Nana and Poppy, as always, thanks for your ongoing support and love.
Let's hope that tomorrow, Nolan feels better and eats a lot more!
For now, love to all of you.
Friday, January 7, 2005 3:00 PM CST
The first day at the clinic went just fine. The nurses, nurse practicioners, doctors, social workers and child life specialists were all wonderful. At one point, it was like a three ring circus. Picture this...I am holding Nolan while sitting in a chair. A nurse is trying to put a needle into his mediport to draw blood, another nurse is blowing bubbles, and the child life specialist is kneeling and pulling out one toy after another in an attempt to distract Nolan (or me), and Nolan isn't going for any of it-just crying. Jason asked the professionals in room if they would come to his next prostate exam...they laughed and so did I. That stopped Nolan's crying.
Blood levels good. Chemo in w/o any problems. In and out in 2.5 hours. Phew! Still need to get some weight on him. One of the nurses owns two ice cream stores and said she would bring him ice cream next week. Meanwhile, I guess I will have to try to improve my cooking.
Please all of you continue to call and write. The doctor's keep reminding us that this will be a "marathon not a sprint" so any kind of on-going support will help us tremendously.
Another really good day. Love you all-
Thursday, January 6, 2005 6:57 PM CST
Day two and going strong...another good day. Nolan played today and crawled a lot more. He still hesitates to walk though. He'll get there. He ate fairly well, but seems more pale today with those darned dark circles again. He's also sneezing. It's funny how a little sneeze sends shivers up one's spine and vivid smells of the CCH cafeteria begin to haunt you again. Tomorrow is our first outpatient visit for bloodwork and chemotherapy. I am praying we walk in and three hours later get to walk out. We will be taking our "doctor beater" though just in case. For those who don't know...a "doctor beater" is a large inflated club that we gave to Nolan to playfully "beat" the doctors and nurses off. We have had lots of fun with it and who knows...maybe it will train him to hit a few home runs for the Indians down the road?
Anyway...wish us luck tomorrow.
Love you all-
Wednesday, January 5, 2005 6:36 PM CST
Okay! We have successfully stayed home now for 27 hours! Nolan has a little more sparkle in his eyes today, stood up in his crib and even crawled a little. There were a couple hours that he just sort of spent "saving his energy" and doing some kind of whining/moaning thing, but the doctors told us to expect this kind of behavior from him. We are not overly worried. We think it may just be that some of his joints are sore from one of the chemotherapies he is getting. As we approach the next treatment (Friday) I have to say we are all becoming more nervous of what it could bring. However, we are not letting that get in the way of just being home, eating our favorite things and laughing as much as possible. We really do feel all of you,who have been calling and writing, around our family. It brings us so much comfort to know you are all there in spirit. It's been a good day! We'll take it!
p.s.
Thank you Meg for cooking us a wonderful dinner tonight and bringing it over in a snowstorm. You are a really good friend and special to me and my family.
Thank you Jill for your insistance that I must not exist in a cave (I know I'm on your speed dial!) and for helping me find the courage to ask for help. My sanity I owe to you.
Courtney
Tuesday, January 4, 2005 12:57 AM CST
Yippee! Nolan, Jason and I returned from the hospital today at 1pm. You should have seen us running out of there. Nolan was laughing and saying "yeah, yeah, yeah" as we repeatedly asked him "want to go home?" Today is a good day. Jason and I are exhausted, but relieved to have Nolan home... (at least I didn't put dishwasher soap in my coffee this morning as I did last week). We have changed our strategy from doing the "poop prayer" to the "eating prayer". One small step at a time. Thanks for your notes and keep 'em coming. We love to read them. I am printing them up to save for Nolan so that when he is older he can know how many wonderful people are in the world!
Courtney
Monday, January 3, 2005 6:36 PM CST
Just returned from the hospital. Unfortunately, Jason and Nolan are not with me as I had REALLY hoped. It turns out, given the amount of weight Nolan has lost, the doctors have decided to be really careful about his eating. Soooo...they took him off of the TPN (total parental nutrition or for the layperson a large yellow bag of calories/vitamins that they give him interveneously) to try to help him to get hungry. Unfortunately, he only had a few cheerios, a half a ravioli, and a little macaroni and cheese. Because he barely ate, they have now put him back on the TPN until 5am. We are hoping that he will eat tomorrow so that we can all safely come home and be together. The doctors are not sure if we will though (it hurts even typing those words).
As for Jason, Julia and we all have our moments. It is truly a roller coaster ride. At the top of the hill, we all feel excitement of a bright future and at the bottom, we all battle really scary feelings and thoughts. Jason and I are working really hard to keep eachother balanced and together so that we can provide all the support, guidance and reassurance that our little Julia needs. I think that this illness is effecting us all and it's difficult to find a way to find the positive effects right now. I know we can all grow from this, but I would really prefer it just be gone and Nolan be well and likewise all of us well. I guess you could say I am in a power struggle with cancer and I am learning quickly that I cannot just will it away, talk it away, run it away, scare it away, laugh it away, etc.
Thanks to you all for all of your prayers, kind words, emotional support, physical support and financial help. We truly don't have the words to thank you all in a way that would validate what you all have given. In the same breath, I am doing an extremely hard thing for me and asking all of you for continued support. We just love you all. A BIG, GIANT THANK YOU to my Bellefaire crew whose on-going kindness keeps me going on a daily basis (really and truly). I just don't know what I would do without all of you. Please keep in touch with me and hopefully I will be seeing all of you soon.
Courtney
Sunday, January 2, 2005 4:06 PM CST
Hi all! Just returned from the hospital. "Bob
Evans" (as Julia would prefer he is called), is very tired today and sleeping alot. He got the green light to try some clears and smooths today, but he is less than interested it seems. I really wish the little guy would be into a Fred Flinstone size steak about now because he is so,so thin. The Nolan we all know and love (you know, the one that rigged the toilet with mardi gras beads to flush repeatedly and eats anything that isn't nailed down) seems to be in hybernation of sorts and saving his energy for bigger things right now. We get very brief glimpses of him though, especially when a nurse or doctor enters the room (i.e. his 10ft. throw of his pacifier that hit the doctor right in the chest). We definately see his willfullness then. To us, that means it's there and I am sure he is directing it mostly toward his illness. It is really good to see it every once and a while though. Comforting in a way.
Please, please continue to pray for him and for us to also have the strength and courage to get through the rough days. There have been many of them lately.
We love you all. Courtney
Saturday, January 1, 2005 8:20 PM CST
Good evening. Well I just got back from the hospital and Nolan is comming along. They took the tube out of his nose and he is eating popsicles. If the little man can keep the popsicles down we can move onto more exciting things like.....Clear Broth. Hey, every step counts and we are keeping our chins up. Thanks again for your prayers
Jason
Saturday, January 1, 2005 7:37 AM CST
Good morning. I just got off of the phone with Courtney who had spent the night at the hospital with Nolan. She told me that Nolan continues having trouble keeping anything in is stomach. An X-ray indicated that the bowels are again dialated so they had to place another NG tube( Nasal Gastric) down his nose and into his stomach to remove excess fluid that his digestive system wont eliminate. The tube will remain there untill he begins to digest. No one is sure exactly why his bowels are dialated again, the theroy is, it may be the chemotherapy and we will have to wait it out. So we wait and watch his bowels and if they obstruct again it's back to surgery. We will keep you posted.
Thank you for your concern,
Jason
Friday December 31,2004
Well, heres the brief update on whats going on with our Nolan. On December 9, 2004 Nolan was diagnosed with having a Wilms Tumor. Wilms is a malignant tumor that grows at a fast pace in an infants Kidney. ON December 14 Nolan underwent a six hour surgery where his right kidney war removed along with the tumor, a portion of his liver and diaphram and several lympnodes along with a fatty piece of his abdomen called the Omentum (spelling?) On Monday December 20th the pathalogy of the tumor came back as a favorable stage 3 Wilms tumor, meaning that there is a 90 uccess rate that the tumor will not return within the first year. Nolan was perscribed 6 radiation treatments and 26 weeks of Chemotherapy during wich he will have a weakend imune system. The compromised imune system will continue for three months after his final chemotherapy dosage. Nolan has finished his radiation and had two dosages of Chemotherapy, but had to be rushed back to the hospital on December 26 for an obstructed Bowel and had a second surgery on December 27. He is currently still in the hospital as of tonight(12/31/2004) not able to digest food completly as of yet but the doctors promise it is only a matter of time. OK so thats it in a nut shell what has happened over the past 4 weeks. I hope to update when possible . Thanks again for caring enough to read this.....Jason
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