August 14, 2007
By Margot | August 14, 2007
Sam’s bone marrow is clear. We are officially NED (No Evidence of Disease). We were on cloud nine for a few days. We’ve since come down to cloud six because we know the realities of this disease -but I must say that the view from cloud six is very nice. Neil and I keep elbowing each other saying things like”Doesn’t he look great?” “Look at him run!” Before the scans we were saying things like “Does he look pale to you?” “Is he limping?” Does it look like he’s favoring that leg a little?” Psychology is a funny thing. Read the rest of this entry »
Topics: Progress Reports | Comments Off on August 14, 2007
August 10, 2007
By Margot | August 10, 2007
The following is directly from the official MIBG report we received today:
FINDINGS: There is physiologic distribution of radionuclide throughout the body. No evidence of metastatic lesions.
The previously seen small foci of increased radiotracer in the left distal femur are not well seen on the current study.
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Did you catch the “No evidence of metastic lesions” part?
Hurray. Hurray. To say that we are thrilled is an understatement. I think I showed the report to every nurse in the clinic with tears in my eyes. I’m running out the door as usual but had to get this up. Sam and I just got back from the bone marrow aspiration and all went fine. We should have results by tomorrow but we’re hoping (an educated hope now) that we’ll be clear.
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As of yesterday our vaccine is ready at Texas Childrens and we’re set to go there two weeks from today for the vaccine trial.
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Pics and details of our awesome week with the Kuhn (or “Cocoon” as Sam calls them) family and Grandma Joan and our Michigan cousins soon.
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Margot
Topics: Progress Reports | Comments Off on August 10, 2007
August 1, 2007
By Margot | August 5, 2007
Just a quick update to say that Sam’s numbers yesterday were beautiful. VMA 2.(something) -sorry don’t have exact numbers handy- HVA: 7.(something) LDH 647. Since we haven’t heard from Texas Childrens, we’ve gone ahead and scheduled scans for next week. MIBG is next Wednesday and bone marrow biopsy (yuck) is on Thursday. Sam is doing great though chemo really knocked his stomach last week and he’s still not eating as much as I’d like (better this week than last). We’ve been doing lots of fun summer stuff (Water park, Legoland, going to feed the ducks and the fish at Paradise Point, Concerts at the Park,and then last night dinner at the Catamaran with the Bonebrakes. Yesterday Sam went to school with Andrew had so much fun he asked me if he could go to school everyday with Andrew. We’ve packed so much in that as I’m putting Sammy to bed at night he says to me, “Now what fun thing did we do today again?” Needless to say, he’s not eager to go back to school. We are lucky. So lucky. Last year at this time, Neil was in New York meeting with doctors trying to figure out a plan for relapse and Sammy and I were meeting with doctors here trying to figure out whether we should do a biopsy on his leg -and I was hoping Charlie would stay in my belly long enough to get all of our necessary hospital visits in. Two years ago we were in the middle of Sam’s stem cell transplant and he was very sick. He received his stem cells on August 4th. In comparison, it is wonderful to be able to write about nausea today and to be going into scans with good numbers. Read the rest of this entry »
Topics: Progress Reports | Comments Off on August 1, 2007
July 24th, 2007
By Margot | July 24, 2007
We finished day two of chemo today. Sam’s LDH yesterday was 614 – still going down. Hurray. Perhaps we shouldn’t freak out so much over each change, but then that is our nature – we are freaker outers. I guess you’ll just have to keep that in mind as you read updates of me freaking out. They pulled a sneaky trick on me and narrowed the normal range as soon as Sam turned 7. It is now from 420 to 750 instead of from 400 to 900 -giving me much more opportunity to freak out.
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Sam did well and I finally wised up today, it being Tuesday, that since we are only doing two days of IV chemo now, there is no reason for me to schedule the first day on a Monday. The reason being that it’s only a half hour infusion but we spend most of the day in the hospital on Monday because the clinic is a freak’n zoo and we have to wait for a bed, an IV pump, etc. Whereas today, we just breezed in and out relatively quickly and got to chat up all our favorite nurses. I was so used to scheduling the first day on Monday because we always had five days of chemo to get in that I just kept doing it. As Andrew is now very fond of saying, “Duh!” (what is he, 15?). Sam is doing well though he threw up on the way to the hospital this morning and then cheerfully said, “At least I didn’t get any on my shirt.” In fact, he’s such a pro that he didn’t get any anywhere but right in the bag I panickedly threw him. As I held the bag aloft with one hand I pulled into, you guessed it, the very same 7/11 whose bushes we’ve avialed ourselves of for bodily fluids many times -I got to use the trash can today. Sam laughed as I was driving one-handedley and said, “What if there was a hole in that bag?” “We’d be screwed,” I answered. Not sure if that would make a good large Hefty Ziploc commercial or not. As I watched the chemo drip into Sam and cursed and appreciated it all at the same time, I fantasized my own little version of 1984 but it was: 2015 (The Medical Version: Big Bother of Cancer): Read the rest of this entry »
Topics: Progress Reports | Comments Off on July 24th, 2007
July 21, 2007
By Margot | July 21, 2007
 
Hey look, Ma. I’m walking.
Family at the Park on Mom’s B-day
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July 13, 2007
By Margot | July 13, 2007
Happy 7th Birthday to Sam, our amazing little (getting big) boy! Sammy, you are our inspiration. You have a wicked sense of humor and a quick smile that goes straight to the heart. I love to watch you laugh (a couple of nights ago you were laughing so hard at Charlie Brown that you couldn’t breathe very well). You are shy with people who don’t know you but anyone who takes the time to get to know you is always a fan for life. You are so mechanically smart that you can fix things and figure out puzzles and mazes way beyond your years. You have always been freakishly coordinated (rode the neighbor’s razor scooter at age 2, rode a bike without training wheels on your 4th birthday and can hit a ball pitched anywhere near your strike zone). You are becoming quite the skateboarder these days. You are my fashion consultant and always help me pick out what to wear if I’m going somewhere. You always want to wear the latest and coolest stuff and are an Imelda Marcos of shoes (you are currently out with your father and Andrew trying to talk Dad into buying you new colored Converse for your birthday). You remember things about people and what they like and what they wear, details that we are amazed you catch and you are very kind. You are a great big brother. You love torment both your little brothers (and me) but you produce acts of kindness towards all of us that take my breath away. You are very persistent and will try anything (including different types of food). You have taken what would bring most adults to their knees in stride, mostly with a smile and just get on with it. You take 40 pills a day without complaint and are proud to show people that you can now take 4 at a time. I’ve seen you throw up and then run out to play with your brother and your friends as if nothing is wrong. Your father and I sometimes want to shout from the rooftops about how wonderful you are and what an amazing spirit you have even after all you’ve gone through and are going through. We want the world to know that you are our hero and our friend. You have skipped soccer camp for the last two days and I couldn’t get out of you why you didn’t want to go but I think it has something to do with your birthday wish that you wrote last night with your tutor: “My birthday wish is to run faster.” I would give anything to be able to give you your wish.Your daddy is working so hard to find medicines that will give you your speed back. You didn’t dwell at all though. As soon as your tutor left you said to Andrew and I, “Come on, let’s go outside and play basketball” and we did.
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Sammy, we love you and we are so proud of you. You teach us how to live every day.
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Love,
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Mom and Dad
Happy Birthday too to Hannah Mikulak who turns eight today! We can’t wait to go to the circus with you!
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July 11, 2007
By Margot | July 11, 2007
Sam’s LDH is steadily on the rise. It jumped to 704 last week and was measured at 743 yesterday. Though we are still within normal range, the trend is not good. We did a VMA/HVA yesterday and should get results back tomorrow or Friday. A couple of people have asked me lately if LDH is a cholesterol level so I thought I’d better explain what it is and why in correlation with several other things, it can be used as a cancer marker. LDH is Lactic Dehydrogenase and is part of a blood chemistry test. It is a measure of tissue breakdown. All cancer cells produce LDH as part of a high turnover rate with destroyed cells. It can also be a measure of cardio problems and other things but for our purposes, in conjunction with other blood and urnine tests, it can be a good NB marker. There are some experts that don’t pay it any mind but most parents and doctors keep an eye on it. I’m trying not to panic.
Sam is feeling great, he’s actually at soccer camp all week and loving it. He asked me today in the car if when he finishes chemo, he’ll get his speed back. It broke my heart. I told him again about Lance Armstrong, I didn’t tell him that he’s had about a bajillion times more chemo than Lance and I didn’t tell him that I don’t know when we’ll be finished with chemo. Texas Children’s is still growing our vaccine. Sam’s cells are slow going due to all the chemo he’s had. They think his vaccine will be finished in a couple of weeks and then they’ll do a couple of weeks of safety testing. So, we may be in Houston in August. I hear that’s the best time of year to be there (ha ha). If the VMA/HVA comes back high we may schedule a scan before Houston so we know what’s going on. I read today that strenuous exercise can casue an elevated LDH and he got his blood taken right after soccer camp yesterday so I was trying to talk myself into the fact that he’s done some strenuous exercise before blood tests for the last three weeks. See what a good rationalizer I am? LDH can also be elevated when a lot of cancer cells die, i.e., treatment is working. I’m trying to talk myself into that one too, though it’s usually at the beginning of a treatment. However, worrying must take a backseat. Friday is Sam’s birthday and we have a lot to celebrate. He wants to go to SeaWorld at night on his actual birthday, Saturday is his party and Sunday is the Wild Animal Park. It will be quite the weekend. Sam’s very excited. I’ll post more on that Friday and Saturday. Andy is doing fine. His new word, thanks to his new obsession with BenTen, is “dweeb” and he keeps calling everyone a dweeb. He and Sammy are trying a tutoring program together and they like it. It’s an hour two to three days a week. Thanks Meryl, for the recommendation.Andy has also his little summer school/camp Tues/Weds/Thurs afternoons so we’ve been running from here to there with all the kids a lot. Little Charlie has been fevery and miserable the past couple of days. It’s not an ear infection as I thought, it’s some kind of virus that’s going around that he caught, according the pedatrician. Poor little guys just wants to lay around and be held by someone. I’ll post VMA/HVA as soon as I get them back.
Margot
July 3, 2007
Ahhh…..
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 Read the rest of this entry »
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June 21, 2007
By Margot | June 21, 2007
Happy Official first day of summer! The boys are jumping in with both feet. They just got back from Anthony’s birthday party complete with jumpy and water balloons. They have Luke’s sports party tomorrow and then on Saturday we leave for New Mexico. Sam’s last day of school was on Tuesday and they had a big picnic in the park. Sam played soccer almost the whole time. He was very happy to sleep in these last couple of days. Both boys are very excited about their vacation and going camping and fishing with Grandpa.
Yesterday we had a blood draw and the numbers are all good. LDH is 579, down from 589 the previous week. C-reactive protein is the lowest it’s been since we started measuring it (see a previous psot for an explanation on that). We’ll get the IL6 and IL10 and VMA/HVA in a few days. Sam also had the audioligist yesterday to make sure his hearing hasn’t deteriorated. It hasn’t. It was stable and even a bit better. It breaks my heart a little to go to these tests with him and listen to the beeps that he just doesn’t hear. Even with his hearing aids, I can tell in the high frequencies he’s tyring to decide if he hears something or not. With his hearing aids, he can repeat back 65% of words at a normal conversation level. She says things like “cupcake” and “popcorn” and he has to repeat them back to her. He tries so darn hard. Even the words he can’t get, he tries so hard to figure out what they might be. I realize he figures out a lot from context and he really needs his FM system in school. He’s a smart cookie though and not a quitter. Read the rest of this entry »
Topics: Progress Reports | Comments Off on June 21, 2007
June 8, 2007
By Margot | June 8, 2007
Wow, a lot to update, June has been quite a whirlwind so far. Monday morning we wrapped up the Coins for a Cure fundraiser at Sam’s school. TeamSam rode in with their new TeamSam jerseys on and thanked all of the kids for all of the money raised and gave Sam his own TeamSam jersey. It is very cool. The total came to, drumroll please…….over $4,000!!! There is no way to sufficiently thank Lori and Gary Emerson, Sue Divicariss, the Swami’s and all of the kids and families who donated. We were overwhelmed by everyone’s generosity. The money will go to The Penelope and Sam Fund and is being used to help start a Nifurtimox trial here at Children’s San Diego. The bike race is on Sunday and for all of our lofty aspirations of going all the way to Flagstaff in an RV, we will end up going to Oceanside in our minivan to see the team off (which Sam is very excited about and plans to wear his jersey to) and then we will follow them on the RAAM web site: http://www.raceacrossamerica.org/. They invited us up a couple of weeks ago to watch them train at night. They were riding up Torrey Pines Hill (which is a killer, I used to run it when I was in better shape). Andy and Charlie were asleep in the car but they told Sam and Neil and I, they’d be up to the top in eight minutes and down in two, then they zoomed off and shot up the hill and were back before we knew it. When we told them how amazing they are, they casually said, “Oh, we’re not even the hill climbers on the team, those guys can really move.” GO TEAM SAM!! Monday night my Aunt Carla and Uncle Andy came in to town and played with the boys a bit and took Neil and I out to dinner at Georges. It was really nice to get and spend some time with with them and it was the kind of dinner with with wine and coffee and everything- no kids menu-it was a amazing. Great to see you Andy and Carla. Read the rest of this entry »
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May 19, 2007
By Neil | May 19, 2007
My dear friend John London and his wife Catherine lost their daughter today. Penelope was diagnosed with neuroblastoma in October, 2003 and pioneered many treatments. Her parents funded the University of Vermont nifurtimox trial which will prove to have the best response rate for relapsed neuroblastoma kids when all is said-and-done. John did more to help other kids than any other parent and worked tirelessly to get more therapies into the clinic. His hero, though was his daughter. She loved watching the Food channel on cable, adored her little brother Oliver and her older sister Isabelle, and would play endlessly with her mom & dad. I had the good fortune to meet Penelope twice. The first time, at CHOP, I scared her because I talk loud and move fast and so when I would call and talk to John, he would often turn to Penelope and say he’s talking to his friend Neil – “you remember him Penelope, the loud guy!” We played Play-doh together and dressed some dolls and hung out for a bit. Her dad and I wore baseball caps with a big P on them – he had shaved his head and it scared her so we bought some hats from the U of Pennslyvania bookstore and called them our Penelope hats. I have my Penelope hat on today – I wear it alot.
Two weeks ago, we lost Bryan Tressler. I was friends with his father also. He has handled his son’s death with a grace that I think we all wish we had. Two very, very loving families have huge holes in their hearts. Death from neuroblastoma is horrifically painful. I mention this because we have to find a cure and if there is a more noble cause than saving kids from this horror, someone better show it to me quick. If you want to help, please visit the link below
http://vermontcancer.org/index.php?page=penelope-and-sam
I can guarantee that it will spawn more innovative treatments than any other program in the United States. You can read about Bryan at www.caringbridge.org/ny/bryan. You can read about Penelope at www.caringbridge.org/ny/penelope
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Neil
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Topics: Progress Reports | Comments Off on May 19, 2007