Therapy
By Margot | August 26, 2008
Some days I feel like the Annette Benning character in American Beauty when she is chanting to herself “I will sell this house today, I will sell this house today, I will sell this house today” as she’s furiously scrubbing the dirty counter tops and sweeping the leaves. I am sometimes gritting my teeth to say “I will remain positive and enjoy every second and help the kids enjoy every second when Sam is feeling good.” As my friend and author, Laurie Ulrich, once told me when I told her that philosophy, “Yeah that’s all well and good, but it’s not very practical, you still have to go to the grocery store and do other errands and deal with real life.”
I just recently remembered a conversation I had long forgotten. When I was first starting out at my job, I was meeting with a computer book author team at a conference. We introduced ourselves and started talking. It came about in the conversation that one of the authors had just lost his two year-old son to a very aggressive cancer. I don’t remember what kind, it could very well have been nb. I was 25 or so at the time, not married and this was completely out of my realm of experience. I think I said how sorry I was to hear it and then probably felt at a loss as to where to go next in the conversation. Somehow we steered back to business and I was explaining the different computer book publishing contracts and what it was like to work with different companies and probably trying to be “in the know” and cool I said “and this company’s contract will want everything including your first born.” The author said “Well it’s too late for that” and then he and his friend laughed. This brave young father looked at me who was apologizing profusely, completely mortified and wishing the words back into my mouth and he said something like: “You have to laugh or you can’t take it.” I’ve been thinking that maybe laughter is the best therapy through all of this - that if you don’t laugh you will curl up and never stop crying for all of these kids.
I tried therapy once. We were in round four of upfront chemo- a particularly toxic combination that was sure to make Sam very sick. Sam was so brave and sweet through all of it, I marvel sometimes at all he endured. We had several relatives in town from different sides of the family. Suffice it to say they weren’t getting along all that well. We had a roommate in our tiny hospital room. He was three and his mother “didn’t sleep well” on the hospital chairs so she left him at about 6pm each night. I felt terrible for the little boy and tried to share toys and food we brought for Sam with him. He liked to chew on his chemo lines and tended to get them tangled and wrapped around things so I spent a lot of time unwrapping his lines from the bed and grabbing them out of his mouth. We were arranging Sam’s Make-a-Wish at the time and before she left one night the little boy’s mother asked me what Sam wanted for his wish. I told her I wasn’t sure what he would ask for. She said, “I told my son to wish his daddy out of jail but they said they don’t grant those kinds of wishes.” Huh. While we were in the hospital my mom decided she wanted to buy us some groceries. My brother-in-law, Matt kindly offered to take her to the grocery store. As they were in the parking lot my mom started fishing through her purse for her sunglasses or something (you never know what my mom will fish out of her purse) and a mouse (swear to God) scurried up out of her purse, onto her arm and jumped off into the parking lot. My mom was very distracted and Matt said to her pointing to the mouse scurrying through the parking lot, “Was that just a mouse that jumped out of your purse?” “What?” my mother said spotting the mouse, “A mouse?” “Ahhhh!” You have to hear my brother-in-law tell the story but apparently my mom ran screaming into the grocery store yelling at all who would listen about the mouse and the Hanta Virus and the fact that she had a grandson with cancer and she needed to wash her hands. Matt said they got her a token for the bathroom immediately and walked her there. I’m guessing that they didn’t want to hear anything about a mouse and the Hanta Virus anywhere near their grocery store. Anyway, that was the week I decided to try therapy. At the time I was racing back from the hospital to spend a few hours with Andrew every day so that he knew he was loved and his family hadn’t disappeared. The whole time I was driving to the therapist appointment I was thinking “Why am I wasting this hour when I should be spending it with Andrew?” The therapist was young, younger than I was. She was a tall thin blond girl with the kind straight hair I’d always wanted growing up. I sat down and started out with “My four year old has cancer, a bad cancer.” I went through all the side effects that he would be facing, what our family was going through and ended up with the mouse jumping out of my mother’s purse. The therapist girl looked like a deer in the headlights –totally out of her depth. Trying to stumble back into familiar territory, she looked at me after I’d finished my long litany of woes and said, “So how is your marriage?” That was the end of therapy for me. I walked out and never went back. I realized later that the best therapy that week was trying to tell my brother the mouse story but I was laughing so hard I was crying and couldn’t get it out.
The problem with going with the laughter as therapy theory is that some days I can’t find an f-ing thing funny about this disease.
Margot
Topics: Progress Reports | 6 Comments »
Quick Numbers Post
By Margot | August 24, 2008
VMA 7.3 = Normal HVA 10.1=barely high. Hallelujah!
MIBG Scan is Friday of this week. Injection Thursday.
Facts learned by Sam at SeaWorld camp last week.
“Did you know that when it’s dark in the water Dolphins find their food by sound?”
“There are two kinds of tall penguins. The king penguin is kind of skinnier and the emperor penguin is kind of fatter like Big Z” (in Surf’s Up)
Andy:
“I sat in the soak zone in the Shamu show and got soooo wet! The fourth row is the most wet row.”
They both came home with great songs from camp and many facts about the manatees. SeaWorld camp was a hit.
We watched Surf’s Up last night at The Movie at the Park Night last night. Sam loves “Chicken Joe” so we’ve been doing Chicken Joe lines this morning. Sam had me download the soundtrack of the movie to his iPod he got for his birthday (I know I know, an eight year old with an iPod- I justified it because Angela Thomas -angel Christi’s mom- said on her site that she bought one for Shayla because you can download audio books on it but Colleen laughed out loud at me and said “Margot, really you think Sam is going to download audio books?”) Anyway, Sam’s favorite song is “You Get What you Give” by the Free Radicals. I love the lyrics. Here is the link on YouTube: http://www.youtube.com/watch?v=gPb6KCtUKwA&feature=related
I’ll do a full post next week. Neil’s out of town for a few days and Charlie’s currently standing on top of my sink.
Please visit the Mikulak’s site and leave some words of support for them: http://www.mikulak.blogspot.com
Margot
Topics: Progress Reports | No Comments »
SeaWorld Camp This Week/Good News-Bad News
By Margot | August 18, 2008
The boys at the end of tennis camp last week.Left to right: Beau,Andy, Grant,Sam,Mack
Sam and Andy loved tennis camp last week. They came home every day excited about the all of the games they played (Jailbreak, something called Wolf and several others). This week is their second camp of the summer, SeaWorld Camp. Charlie and I dropped them off this morning and Mack and Grant and Beau will be there too so I hope they have fun.
Last week we got good VMA/HVA numbers VMA:7.7 HVA: 11.9. Needless to say we were thrilled. 7.7 is almost normal apparently switching things up a bit helped out. Our ANC got down to 900 last week. We do not want Sam have low white counts and though that’s not that low, it’s the lowest we’ve been in a while. Sam gets very sick when he has no white counts. He bounces back into the hospital every single time his counts get low. We did it through up front therapy and when he first relapsed-every two weeks on schedule, we’d spend a week to ten days in the hosptial waiting for his counts to come back. We do not want him to have to go down that road again, especially since we want to stay on low dose long term. It didn’t seem to matter if we keep him home in a bubble or let him go out. We are tyring Israeli honey to keep counts up. Neil discovered it. We’ve heard good things about it and it’s a no brainer (except for the price), since it’s honey. We got our first little two by two jar a few months ago and the first morning I was going to give it to Sam, I fumbled the little glass jar and it shattered on the floor (it was if I’d just shattered a Tiffany vase).. It’s funny now but not so much at the time. We’d stopped giving it because Sam didn’t like it but since we got the 900 number, we’ve devised a sort of honey popsicle that Sam will eat.
The other disturbing development last week is that there was blood in Sam’s urine. Usually at the end of the day and at the very end of the urine stream. According to my research on the Internet, the end of the day and the end of the urine stream indicates bladder and urethra, not kidneys. We started hydrating Sam like crazy and it stopped for a couple of days and then it started again. We’ve taken a couple of days off chemo and haven’t seen it. We did a urinalysis which was completely clear. It’s an on again off again thing but obviously something we need to keep on top of.
In terms of mood and energy, aside from the fact that there has been quite a lot of lip coming from he and his little brother lately, Sam has been in great spirits and came back from tennis camp last week saying that he wished I’d signed him up for the whole day. We’re getting ready for school to start. We’ve been doing practice homework daily to get them ready and Andy has been working on tying his shoes. Watching Andy nervous at camp today before his friends arrived brought home that his first day of kindergarten is coming up. It’s our family’s first first day of kindergarten, as Sam was in stem cell transplant on his official first day of kindergarten (though he did have his first day finally in March of that year). We let the boys each get new shoes for school this weekend and Sam picked out cool guy DC shoes. They are black and white with a little red. He asked the sales lady if they come with red laces. I flinched but when she put them in, I must say they looked much better. I don’t know where that kid gets his sense of style - must come from me (I’m sure you would have come to that conclusion had you seen me this morning dropping the kids off at SeaWorld camp 
).
Charlie has develped a great fake laugh. He even does the little sigh at the end. All the boys have been Olympics crazed these past couple of weeks. They love to watch diving for some reason (though honestly Sam will watch any sport that’s on even if everyone else thinks it’s a snore). Charlie calls diving “swimming falling.” Though we’ve tried to tell Andy who our team is, he roots for whoever is ahead, which in diving tends to be the Chinese.
There are some exciting things coming up in NB research lately. I happen to live with an amazing man who has his finger on the pulse and keeps informing me of very promising things. Dr. Sholler has some exciting things brewing in the lab and clinic. Also,check out this artilce in Science Daily. I’m always amazed at how many treatment leaps are made by surgeons: http://www.sciencedaily.com/releases/2008/08/080815200208.htm
Margot
Topics: Progress Reports | 2 Comments »
Happy Birthday Charlie!
By Margot | August 11, 2008
Charlie is two today! He had fun at his party yesterday and will open his family presents tonight when Neil gets home from work. A few quotes from our little boy might give you some insight into his personality:
“Mom, what doin’?”
“I’m folding laundry Charlie, what are you doing?”
”I’m doin’ whoa! Watz this!” -launches self down steps two at at time while exclaiming, “Whoa!”
“Sim (Sam), Annie (Andy) Wan play tackle?” launches self at Sam and/or Andy laughing saying “Tackled!”
“Where my ten racket?” Asking for his tennis racket so he has one while we drop off his brothers at camp.
Sam to me, “Mom, look at what I taught Charlie.” “Ready Charlie?” Sam and Charlie both sit down on their skateboards with legs out front, put their arms around each other and go down our little driveway hill, saying, “Whoa!” while connected all the way down.
I can’t believe he’s already two and he can’t believe he’s only two. He brings joy wherever he goes and has certainly brought joy for the past two years to every member of our family. Happy Birthday Mr. Baby! (Andy’s nickname for him).
Sam and Andy started tennis camp today and loved it. Sam met some new friends in his group and Andy had Beau and Grant in his group. The three amigos were very happy to be reunited at camp. I was a little worried for Sam because he didn’t know anyone in his age group but had said he wanted to go. When I picked him up, he had a big smile on his face and was playing tag. They have camp all week this week from 9:30 to 12:30 (don’t tell our orthopedist-Sam’s ankles are fine by the way). Sam has a blood check tomorrow and vision therapy at 3 after camp. We restart chemo this week as well.
Margot
Topics: Progress Reports | 3 Comments »
Good Cats
By Margot | August 6, 2008
Boys and Dad at the park after water balloon fight
VMA/HVA last week were 10.6 and 13.9 so HVA is on the way and VMA is holding steady.
I dropped the boys off at tennis today and Coach Joe said they are going to grow out of their rackets pretty quickly with “their talent.” That was really all it took for me to start fantasizing on the way home about having the male version of the Williams sisters growing up in our house-and then I took it further and added Charlie since I can tell he has a great swing. I was thinking of the Sports Illustrated Cover featuring our three boys with the miracle story of Sam and the fact that he overcame cancer to grow up to be the new Roger Federer with his brothers Nadal and Nadal. “Come to think of it,” I thought to myself, “When Andy has his hat on, he looks a little like Jim Courrier.” I know that you are thinking, “This woman needs a reality check” or “Sports mom gone berserk!” Maybe it was the good numbers yesterday that allowed me to dream big. But as I was chastising myself for my day dreams, I realized that I live in a reality check all time. So if some people have hero fantisies are about rescuing people from anairplane crash and going on the Today Show, I’ll let myself give in every once in a while to the crazy parent fantasy that we all have. If you are thinking “speak for yourself, you are delusional” then leave me with my delusions for today. I need them sometimes.
We had a good Neil’s birthday weekend with a water ballon fight at the park, bowling (the boys choice for Dad’s birthday) and a bonfire and watching fireworks at the beach Sunday night (Dad’s choice). The boys loved the bonfire, so we will do it again before summer is over. Sam is still feeling good and active as you can see. Weight is holding steady. AST and ALT are back down (they had been a little high), we are on the off week of chemo and Sam is eating well. Neil as usual has been hunting cancer cells with dedication and determination that never ceases to amaze me.
Charlie boy turns two next Monday (don’t tell him that though). He’s the exact age Andrew was when Sam was diagnosed. Welcome to cancer family milestones. We’ll have a little pool party for him, he’s becoming more and more of ham, so funny.
More next week when we start to mix things up a bit.
Margot
Topics: Progress Reports | 4 Comments »
What We’ve Been Up To
By Margot | July 31, 2008
Neil and boys at the Nighttime zoo
All of us saying goodbye to John and Sock at the airport
John, Sam and Neil at Paradise Point Hotel
Everyone is doing well. Sam has great energy and has been eating well. His weight has stayed steady at 24.4 kilos (most he’s ever weighed).
We had a great time last week at Artie and Jen’s wedding. Congratulations Artie and Jen! Got to see all the old gang (great to see Chris and Diane in town with Christopher and Matt) and it was a beautiful ceremony. Neil left a little early to pick up Sam’s chemo for Saturday and I stayed until I had to coach basketball. I pulled it off even after a few glasses of wine (really that Enjoli lady has nothing on me - ha ha). The ref only had to tell me which way we were going twice.
Last Saturday John London and Scott (the boys call him “Sock”) Kennedy came into town and spent a few days. The boys loved both of them and had a great time playing basketball and tackling them and hanging out at their hotel, swimming, feeding the ducks, etc. It was wonderful for the boys and me to finally get to meet John who has meant so much to Neil and our family throughout the past two years. He was just great with the boys. The beautiful Penelope had a wonderful dad. The boys knew Scott from the MagicWater meeting earlier in the Spring when they nicknamed him “Sock.” They gravitated right to him when he walked in the door and picked up right where they left off wrestling with him. Scott lost his son Hazen to nb almost two years ago. I know I don’t have to reiterate how unfair and awful and sucky this disease is but there are days when I want to scream it from the rooftops.
We met with Dr. Willert this week about changing up Sam’s chemo. He will do the Irrino/Temodar for the three week schedule we are on and then do a cycle with Temodar, accutane, and three or four other things showing promise with some kids. The theory is to keep the cancer guessing and not get it too used one thing all the while keeping it low dose. Dr. Willert likes the idea. VMA is at 10 last week (yay) HVA was 18 (wish it were lower). We don’t have this week’s results back yet.
Tuesday we did the nighttime zoo and the big cats were out and about. Charlie is the perfect zoo age and could have stayed at each animal forever. He talked to an orangutan who came right up to the glass and said “He’s talkin to me, mom and then he put his face right up to the glass. We went swimming with the Bonebrake boys today and are working on an August vacation and some camps. Stay tuned. Friday is our last basketball game so we’ll get some pics. The boys are starting to talk about school and Sam asked when we will find out who his teacher will be today. He’s doing really well with vision therapy and it’s amazing to see how much progress he’s made in just five sessions. His eyes don’t jump when he’s focussing on things. I actually never notice they jumped until we started doing the exercises. He loves vision therapy and he works really hard at it as he does most things.
Neil and I will be married ten years tomorrow and Neil’s birthday is on Saturday. No big plans as of yet but we may do something spontaneous.
More soon.
Margot
Topics: Progress Reports | 3 Comments »
Childhood Cancer Act Signed Yesterday
By Margot | July 30, 2008
President Bush signed the Carolyn Price Walker Conquer Childhood Cancer act yesterday and the beautiful Eden Adams was there to see it happen. See the awesome article below.
I don’t want to sound complainy and say “finally” but this has been the School House Rock bill singing “I’m Just a Bill, Sitting here on Capital Hill” for way too long. Now all you young Einsteins starting out your research career, get to know the word “neuroblastoma. ” Oh yes, and hurry up. I’ll update our news tomorrow with pics…
Bush signs pediatric cancer bill named for Rep. Pryce’s daughter
Tuesday, July 29, 2008
By Jonathan Riskind
Ron Edmonds | AP President Bush smiles at 8-year-old Eden Adams of New Albany in the Oval Office of the White House today after signing the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. On the desk is a photo of Caroline. 
Tim Revell | Dispatch
Legislators named the bill for Caroline Pryce Walker, shown here with her mother, U.S. Rep. Deborah Pryce, at home in Columbus in 1998.
WASHINGTON — They’ve been in a tough fight with a vicious disease, but two little girls from central Ohio emerged from the Oval Office and walked out onto the driveway outside the White House this morning with wide grins, official pins and presidential words of encouragement. Hannah Lewis, 7, of Reynoldsburg and Eden Adams, 8, of New Albany, who became friends as they underwent cancer treatment at Nationwide Children’s Hospital in Columbus, were among those on hand to watch President Bush sign a pediatric cancer bill into law.The Caroline Pryce Walker Conquer Childhood Cancer Act was crafted by Rep. Deborah Pryce, R-Upper Arlington, and named by lawmakers after her daughter, who died in 1999 after battling neuroblastoma.Both Hannah and Eden used the same word to describe meeting the president and first lady, being given presents and a tour of the Oval Office: “Cool.”The signing ceremony was not open to the press aside from still photographers, but Hannah’s mother, Jessica Lewis, said Bush told the families that he knew “we were going through a tough time and wished us the best.”Jessica Lewis and Eden’s father, Rourke Adams, said they hope the next step after President Bush’s signature will be for Congress to approve spending the first $30 million installment this year of what the law calls for: $150 million over five years for such initiatives as expanded pediatric cancer research and a national childhood cancer database. The single parents saw their friendship at Nationwide Children’s Hospital, which paid for the families to attend the White House signing ceremony, blossom into a relationship. “This is something we deal with every day,” Rourke Adams said about having a child who is battling cancer. Adams said it is his hope that a fully funded cancer database will in future years give researchers more information about why children develop cancer. After the signing ceremony, Pryce said she was “delighted” to see her legislation enacted.The president and first lady spent a lot of time with the children and families – including Hannah’s five-year-old brother, Duncan, and Eden’s brother Riley, 14 - before Bush wielded his signing pen, Pryce said. Bush lost his three-year-old sister Robin to leukemia in 1953 and Bush told Pryce he is looking forward to telling his parents that he got to sign the pediatric “This is a great step forward,” Pryce said. “We have been waiting for this day for years now.”
Topics: Progress Reports | 1 Comment »
Great Week Off Chemo
By Margot | July 18, 2008
Sam with his cake
Boys with the Casitllo Gang at Legoland
Sam’s volley
Andy readying for killer forehand
Sam “dropping in” to mini bowl at skatepark
Charlie skating
Sam has had a great week. The boys have been going to tennis clinic every morning which they are liking a lot, then swimming on Monday and Wednesday. We have a new instructor who is a young teenage guy, Larry, and Sam and Andy think he’s the bees knees. They have a lot of fun with him and they are coming along pretty well in swimming. Wednesday we had tennis, swimming and basketball and Sam breezed right through all of it in good spirits. He’s been in a great mood this week and eating like a horse which is very nice to see. Cathy and the gang are down for a few days from Irvine so we’ve been to SeaWorld and Legoland (last night). All three boys get along so well with all of the Castillo kids. Sam got to go on his favorite Project X roller coaster with Ally and Andy. Andy had to sit with an adult and I had to stay out with Charlie so a very nice kindergarten teacher sat with him and when they went down the big fast hill, Andy grabbed on and hugged her for dear life. I was laughing as I watched them come down. Basketball game tonight. The black jaguars are still tearing it up. We’ll get some pics of them up here next. Charlie is coming along to everything with me. He brings his tennis racket to tennis, it’s almost bigger than he is. The quote of the week is from my mom. She left on Tuesday and it was great to have her here for Sam’s birthday. She came all the way out for the big day. I’m still laughing at what she said when I let Sam steer in the SeaWorld parking lot after we gave the guy our parking ticket ,”Margot, you’re just like that Brittany Spears woman! Sitting with Sam in your lap in the driver’s seat!” I said “Yeah, pretty close, except that she was on the LA freeway and I think her baby was four months old and Sam is eight and we’re in the SeaWorld parking lot going two miles an hour.” ‘No, No. this is just like her.” Mom, we love you.
Sam’s VMA/HVA is 13 and 13 Last week VMA was down to 9.2 and HVA was 13 so we are bummed that VMA went back up. We start chemo on Saturday. The boys have been busy and active and I hope it stays that way.
Brave, brave Dustin Cobb passed away yesterday in his mother’s arms. Please think good thoughts and say some prayers for his family:
http://www.caringbridge.org/ga/dustincobb/
Margot
Topics: Progress Reports | 2 Comments »
Eight
By Margot | July 14, 2008
Sam turned eight today. He had a big weekend. Cupcakes and two baskets at Friday night’s basketball game, lunch out with Dad yesterday, laser tag party yesterday afternoon, home for a late night swim with his brothers and all his new pool toys and today, we went up to family day at the park where he went down the slip and slide, ran up and down the hill, got his face painted and went in the jumpy with Charlie. Tonight we had the Monacos and Brunettes over for a swim and cake number two. As I was putting a very sleepy Sam to bed tonight I asked him what his favorite part was and he said it was getting early to the park before the line started and he and Andrew going down the the water slide a million times, sitting next to me and Dad on the blanket, and laser tag yesteray. My favorite part of his birthday weekend was building one of his legos with him last night after his brothers had gone to bed and working with him at the crafts table today up at the park. At the crafts table, he was so carefully coloring a beach ball and I was helping him when he stopped and reached for a marker that he’d noticed a little three year-old stretching for, gently handed it to her without saying a word and went back to his coloring. I hadn’t even noticed her reaching but Sam did. It was a simple thing anyone would do, but it just filled me up. Neil is asleep or I’d ask him his favorite part but I’m thinking he loved his lunch out with Sam, laser tag and playing with the kids in the pool tonight. Thanks to everyone who helped make Sammy’s birthday fun. We’ll put up some pics soon.
We had an extra spot for laser tag so Neil was able to do it too. He rallied all the kids and got them to taunt the other 13 year-old party they were playing against (Neil said they showed no mercy - I was out waiting in the party room with Charlie and Grandma and Lisa, Julie and Jennifer (moms who stayed) and Samantha who had broken her foot so hung out with us until cake time. It was a good thing that Neil was in there because he said Andy was pretty terrified in the beginning until he got into it and started jumping out from behind the corners. Andy, by the way, is still telling everyone he sees how we “tricked them” into believing he was seven so he could play. Oh, I hope that he doesn’t turn out to be a famous con-artist who tells people, “It all started when I was able to trick the laser tag people.” It was great to see Sam with such a huge smile on his face all weekend. He really had fun at his party with all of his friends. He had a lot of energy and aside from only being able to take about two bites of each cake before his tummy hurt, and stepping on a bee today at the park, he thoroughly enjoyed his birthday weekend. He and Andy were great to watch on the water slide, they’d start running from way back and take flying leaps onto it and scream down the hill on their tummies. Charlie was a maniac in the jumpy and did not want to get out.
Eight will be times tables and cursive. It will be moving up to the 8-10 leagues in sports. It will be helping his little brother Andrew navigate elementary school and watching his little brother Charlie get rid of “dipes” and into big boy undies (we hope). It will be laughing his infectious laugh at things he finds funny and using his master negotiating skills to get out of tasks unpleasant. It will be unforseen moments of joy and new understading of many different things. It will be all of this with cancer but it will not be all about cancer. God, please give us all of Eight. And then, we will come back and ask for all of Nine……
Topics: Progress Reports | 9 Comments »
Happy Pre-4th!
By Margot | July 3, 2008
The boys are doing fine. They’ve gotten over their coughs are back to regularly scheduled summer. Sam and Andy have been taking some desperately needed swimming lessons this week. They are both strong swimmers but have no form or function whatsoever. I was chastising myself after watching their first lesson - thinking to myself “How have I let the boys get this old without knowing how to side-breathe?” Really can I be more ridiculous? Sam has been tearing it up in baskbetball. If I can ever figure the whole video thing, I’d love to post his face after he makes a basket. It really is awesome. Our summer league team is stacked with talent. Mike and I like to say it’s all coaching but…
Sam’s been moody the last few days, weepy, mad, goofy, you name it. I don’t know if it’s the end of the chemo cycle that’s doing it or something else. He’s much better today though, he slept in until ten this morning so he may just be worn out. By choice, he’s keeping up with all his friends and brothers in summer activities and I marvel at how it does it sometimes. He threw up a couple of times yesterday -cumulitive effect from the chemo but was good about it as always and didn’t make a big deal. We are on our off day from chemo. I was wrong in my last post. We didn’t start until last Saturday. I’m all screwed up with the schedule. His numbers have been good. HVA/VMA this week are 10 and 12 (still above normal but getting where we like them to be. His VegF numbers this moring from Dr. Belanger was great according to Neil and Dr. Belanger. VegF is an inflammatory number that can be a cancer marker (as long as your ankles aren’t broken). Sam’s ankles are still holding strong.
We are getting ready for Sam’s laser tag party next weekend. He’ll be eight. Holy Cow! I’ll stop and ruminate on that and all that it means to us in some future post. Amazingly Andy will turn seven on the day of Sam’s birthday party. He gets to skip one and a half years so that he can participate in laser tag . Charlie boy is cute and funny. He is a ham if I ever saw one and now can do all sorts of different voices when he wants to be scary or mad. The friend birthday parties are coming fast and furious and Charlie’s got the routine down now and as soon as we get somewhere and he sees presents he starts asking for pizza and cake. It cracks me up.
I expect Sam’s red blood count may drop next week in the middle of the one chemo only week. We have a blood check on Monday and I’ll post again then. Please keep Sam and Max and Will and Erin and every kid fighting this awful disease in your thoughts. Also, our hearts go out to the Daily family who lost Joe on Sunday. He was an inspiration to the entire NB community and to many outside it : http://www.mlive.com/flintjournal/community/index.ssf/2008/06/a_teacher_and_inspiration_joe.html
Margot
Topics: Progress Reports | 5 Comments »
