teamsam.com Blog

May 15, 2007

By Margot | May 15, 2007

Making Hay While the Sun Shines

Sammy has been feeling great and this past week and a half off chemo, he has been running around doing normal kid stuff. I can’t remember when I’ve seen him with this much energy. This past weekend we decided to get out of Dodge and we pricelined a hotel in Palm Springs and got one with a 40 foot water slide. We took off early Friday. The kids had a blast and went down at least a thousand times. Even Charlie went down a couple of times with Andrew and I while Neil was packing up our room in the morning. Sammy was tall enough to go on his own but Andrew wasn’t, so Andrew, Charlie and I shot down together a few times. Much to my surprise, Charlie loved it. I think I’ve written here before that he is a thrill seeker. We spent the hottest part of the day on Saturday in the awesome Palm Springs Children’s Museum and then went back for more swimming late in the afternoon. It was a much needed break for all of us and Sam’s sweet little, “Can we do this again some time?” from the back seat on the way home made us realize we should be doing much more of it. The kids did great on way out there and we played a lot of “I’m Thinking of an Animal Vegetable or Mineral.” We got back in time for the Courageous Kid’s Mother’s Day at SeaWorld hosted by the American Cancer Society. The boys went straight for the rollercoaster as Andy is finally tall enough to ride it. Don’t know if you can see the terror in his face in the picture below, but it was a little much for him- though both boys did it twice, once with me and once with Neil. Sam brought this picture to sharing yesterday at school. He loved it and wants to go back every day. As you can see from the picture, he never looks on the way down. Sunday night we were going to go out to dinner but when we got to the restaurant we realized both Andy and Charlie were asleep. Neil said he’d stay in the car with them while Sammy and I went in and had a Mother’s Day date together. It was the best Fish and Chips and Cheese Pizza ever as Sam sat on my lap and we ordered the gooiest dessert on the menu. Happy Belated Mother’s Day to my mom, Joan and Stephanie. Owie, we missed you on this Mother’s Day. Read the rest of this entry »

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May 3, 2007

By Margot | May 3, 2007

The Family with TEAMSAM
 
The kickoff for Coins for a Cure went really well on Tuesday. The whole Swami’s team rode their bikes to the school and the kids thought it was so cool. Gary Emerson, Mrs Emerson’s husband (he’s to my left in the picture)told the kids that they are renaming their team TEAMSAM for the Race Across America and that Sam is going to be their team captain and if he says to go slow they’ll go slow, if he says to go fast, they’ll go fast. He was really awesome. Sam was talking about it all day. We were in the hospital yesterday for chemo and we flipped by a channel on TV with a bike race on, he made me go back and we watched bike racing all afternoon. The race on TV was in France and Sam said, “Is our team, you know, TEAMSAM, are they going to have to go to another world for the race?” So I told him that our guys are going from San Diego to Flagstaff through mountains and a desert.
 
They said last year the night temp in the mountains got down to about 30 degrees and the desert was about 115 degrees. These guys are crazy. An added benefit of doing the Coins for the Cure kick-off is that Sam really wants to go to school this week. Thank you Kate Sessions and Swami’s. You made Sam very happy and the money being raised is desperately needed and we are so grateful. A few of the girls and I are considering following the team with kids in an RV (Darcy’s idea). Though I’d stay off the road between here and Flagstaff if I were you, if we are actually driving an RV. It should make for some good web posts so stay tuned. The actual race is on June 10th and 11th.
 
Sam is feeling pretty good this week. He threw up breakfast yesterday but seemed to feel fine afterwards. He fell asleep towards the end of chemo yesterday and stayed asleep for a couple of hours only to wake up in time for soccer. He had plenty of energy for practice and had a huge smile on his face the whole time. Andy and Charlie are doing well. Andy had a Cinco de Mayo party at school today but fell asleep before we could go. He’s going to be bummed when he wakes up because he really wanted to wear a sombrero. Charlie is standing up on his own for longer and longer and Elizabeth taught him how to do a high five yesterday.
 
Margot

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May 1, 2007

By Neil | May 1, 2007

This article about the Londons and their fight to save Penelope is on the front page of today’s Wall Street Journal:
Saying No to Penelope – WSJ article about neuroblastoma
PAGE ONE
Saying No to Penelope
Father Seeks Experimental Cancer Drug,But a Biotech Firm Says Risk Is Too High
By GEETA ANAND
May 1, 2007
NEW YORK — John London, a successful hedge-fund executive, is desperate to save his 4-year-old daughter, who suffers from a rare cancer. She clings to life at NewYork University Medical Center here, sucking her thumb and clutching her favorite teddy bear..
 
For the past month, Mr. London has been begging a small biotechnology firm to allow Penelope to be treated with an experimental cancer drug that might help. Mr. London has received high-powered support: Several legislators, including House Speaker Nancy Pelosi, have lobbied the company and its board to make the drug available. The Food and Drug Administration isn’t blocking the way. Read the rest of this entry »

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April 30, 2007

By Margot | April 30, 2007

The official word from Children’s San Diego on the MIBG is that Sam’s disease is stable – though the doctors say that the uptake is not visible on the computer screen at all.
 
Sam is at school today. He missed three days last week but was cheerful this morning on his way. He was a little tired on Saturday but rallied yesterday for going tide-pooling in the morning and soccer in the afternoon (don’t ask what the score was- it was ugly). Last night I was reading the boys a book – Scooby Doo and the Marsh Montser- and there was a Mr. Samuels in it. Sam said, “Hey Mom, Samuels! Get it? From now on when you read his name can you say Mr. Sam?” It was funny. I read the rest of the book reading “Mr. Sam” and Sam was satisfied. People who don’t know him at the hospital address him as “Samuel” and he hates it so he must have assumed Mr. Samuels would have hated it too. He’s been making Charlie laugh a lot these days. He can really get him going and he loves it. I’m sorry to say that he and Andy can also get Charlie crying too, they treat him like their favorite toy which is mostly good but sometimes requires intervention. I have to run out of the kitchen when I hear, “Hey Andrew, watch this.” and then I hear Charlie cry. They aren’t really hurting him, just pestering him. He is a cutie. So sweet. He’s cruising around the furniture these days and lets go every once in a while and balances for a few seconds before falling on his behind. He’s a lighting fast crawler and though we’ve put a gate at the top of the stairs, we’ve yet to get one for the bottom of the stairs. He can get to the top in record time and it’s his favorite game to see how many stairs he can climb before someone comes and collects him. Andy is doing well, we’re starting to work with him on writing his letters and numbers. I bought a couple of preschool workbooks and it’s been great for Sam. When Sam does his homework Andrew does his worksheets. Sam is much more chipper about doing his homework now that someone else is suffering with him. I watched Andrew from afar after soccer yesterday. He was shaking the other team’s hands telling them “good game” as we’ve taught him to do and whenever anyone shook his hand he shook his whole arm and head making them laugh. After a couple of handshakes the whole other team was lining up to shake hands with Andrew. It was a quintissential Andrew moment. Read the rest of this entry »

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April 26, 2007

By Margot | April 26, 2007

The roller coaster of scan week has not dissapointed. Since I know everyone is waiting for this part, I’ll start with the fact that the MIBG looked good to us this morning. We think we are either stable or better either of which we’ll take. The official report is not back yet though so we may be totally wrong. Earlier this week the MRI showed that in comparison to the last MRI we had way back in August, the two lesions had grown and there were several new spots. This threw Neil and I into a panic until we talked Dr. Sholler and she told us that you can have abnormal MRIs for up to two years after there is bone damage. So we did the last MRI before we went on Fenretinide and the lesions showing up now could be from when we progressed back then. A clear or almost clear MIBG is a good sign. On the other hand the MRI is also a leading indicator. We saw our first relapse spot on the MRI months before it showed up on the MIBG. So, where does that leave us? Well we’re probably going to do a bone marrow biopsy to see where we are with that. If we do that it will allow to send cells to a couple of different labs. We are cautiously happy since blood work is normal. I’ll write a more in-depth report after we get the official MIBG report.

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April 16, 2007

By Margot | April 16, 2007

Playing the Lottery
 
My grandmother played the lottery every week. “Margy,” she’d say, “I have all the money I’m going to win parceled out to every family member, I have all the trips I’m going to take planned out and I’m ready to go shopping if my numbers come up.” I continue the tradition and have actually had the thought that maybe since Grandma played her whole life and only won eleven dollars, the laws of the universe will work in my favor and the luck that would have eventually come her way might come mine. Muddled logic I know. My Dad, who is a math genius, used to tell me that the lottery was a tax on the stupid. “Do you know what the actual odds are of winning the lottery, Margot? He used to ask me. “Well Dad,” I’d say defiantly, “somebody wins.” I go into the same 7/11 after dropping Andy off from preschool and the same guy sells me my ticket. I go in and ask with my deadpan gangster face as if I’m passing information on bank heist and ask, “Anybody hit on Wednesday?” We say “hit” in 7/11 not “win.” He always knows. “Guy up in Rancho Bernardo hit. Only five numbers though – didn’t have the mega. $250,000.” I nod once and say “Two quick picks.” He somberly hands me my ticket and wishes me luck. Sometimes if it’s a big jackpot I’ll buy three quick picks then he raises his eyebrows and says, “Feeling lucky this week, huh?” Oh, I would go shopping if I won. I would shop for The Seneca Valley Virus Trial and The Bromopyruvate Trial and The Dichloracetate Trial and any other trial that might save Sam and Penelope and Max and Emily and all the kids fighting neuroblastoma . Cost of each trial: $1 million to $1.5 million. Being able to see Sam graduate from high school? Priceless. Ah, there’s the lottery I really want to win.
 
So, let’s talk about the odds. What are the odds of my son getting a rare cancer? Hmm. Pretty high. What are the odds of one the drugs currently in development being a cure? Actually there are several drugs/treatments that are looking very promising. Do the odds go up if we are depending on me wining the lottery to fund the clinical trials necessary to get these drugs into kids? Yes, they do. Money Money Money, it’s a rich cancer’s game. Survival rates for Leukemia and Breast Cancer and Prostate cancer have gone up dramatically since money for research has poured in. Unfortunately, Neuroblastoma is a very poor cancer. We are going to change that.
 
Neil is working on budgets for clinical trials today so it got me thinking about money. Sam is in school today and doing fine. His leg hurt yesterday during soccer but his numbers are very pretty. LDH Friday was 579 and HVA and VMA were 8.3 and 3.6 respectively -both normal. MRI is Friday. MIBG is next Thursday.
 
Margot

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April 12, 2007

By Margot | April 12, 2007

SHED THOSE UNWANTED POUNDS!! LOSE UP TO SIX POUNDS IN ONE WEEK!!

No messy powders or terrible tasting pills! No exercise required! No difficult menu planning! It’s THE SCAN WEEK DIET.

You don’t need any expensive exercise machines or books for this diet. All that is required is that you have a child with cancer who needs to be scanned every three months or so. Your appetite will vanish! Your heart rate will stay elevated above 140 for at least the two hours during the scan and probably hours before and after – without doing any exercise. Sometimes you are so preoccupied that you forget to eat. If you see something new light up on the screen, you might even throw up.

Forget the South Beach and Atkins diet. Throw out that You On a Diet book. There is no diet available today as effective as: THE SCAN WEEK DIET Read the rest of this entry »

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April 11, 2007

By Margot | April 11, 2007

Quick update to yesterday’s post. Numbers were all pretty good: ANC 1300 Red Blood: 10 Platelets 96 They didn’t do a chem panel so I don’t have an LDH. We did do an HVA/VMA and we should have that back within a few days. During Sam’s doctor check for the MRI he told the nurse practitioner the reason his knee is hurting is that he remembers being run over by a “big guy” when playing the blue team in soccer several weeks ago but that it’s getting bettter. This is the first Neil or I had heard that explanation. I tried not to jump for joy right there in the exam room. We’re hoping that’s all it is but are still nervous. The reason Sam had to have a doctor’s check is that we’ve decided to put him to sleep for this MRI. It’s the first time he’s been sedated for an exam in two years, he’s such a trooper but this is a two hour MRI and the last one we did was tough on him. The tech ladies put these really heavy things over his legs and after about an hour and a half he started to move around because his heels hurt and they got fairly nasty about it. You can imagine our reaction to that. Anyway, he’ll be asleep this time so it won’t be so rough on him.

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April 10, 2007

By Margot | April 10, 2007

The boys had a wonderful Easter. The Easter Bunny left them an egg treasure hunt to their baskets. Sam loves the treasure hunt every Easter and as he was going to bed the night before, he was trying to guess where the Easter bunny might leave each map and where he would ultimately find his basket. Both boys were very excited when they found the first egg with the map in it. We went to the Mikulaks for brunch afterwards and it was very nice. The kids were thrilled that some of the eggs at that Easter egg hunt had dollars in them. Andy was walking around saying “I’m rich. I’m rich.” Grandma Sara has been in town for the last four days or so and has come with us to all of the various spring break activities. We met the Harringtons at Legoland on Friday after chemo and the kids had a great time with Grayson and Miranda. Sam and Grayson rode all of the roller coasters together. They are now tall enough to ride in their own car. They both had the hugest grins on their faces. Andy rode his first scary roller coaster with me. He had a big grin on his face until we hit the first big scary hill and then his expression changed to sheer terror and I spent the rest of the ride reassuring him that the scariest part was over. He wanted to “do it again” when we finished. Grandma Sara sat with Charlie while we went on the rides. Read the rest of this entry »

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April 10, 2007

By Laurel | April 10, 2007

The boys had a wonderful Easter. The Easter Bunny left them an egg treasure hunt to their baskets. Sam loves the treasure hunt every Easter and as he was going to bed the night before, he was trying to guess where the Easter bunny might leave each map and where he would ultimately find his basket. Both boys were very excited when they found the first egg with the map in it. We went to the Mikulaks for brunch afterwards and it was very nice. The kids were thrilled that some of the eggs at that Easter egg hunt had dollars in them. Andy was walking around saying “I’m rich. I’m rich.” Grandma Sara has been in town for the last four days or so and has come with us to all of the various spring break activities. We met the Harringtons at Legoland on Friday after chemo and the kids had a great time with Grayson and Miranda. Sam and Grayson rode all of the roller coasters together. They are now tall enough to ride in their own car. They both had the hugest grins on their faces. Andy rode his first scary roller coaster with me. He had a big grin on his face until we hit the first big scary hill and then his expression changed to sheer terror and I spent the rest of the ride reassuring him that the scariest part was over. He wanted to “do it again” when we finished. Grandma Sara sat with Charlie while we went on the rides. Read the rest of this entry »

Topics: Progress Reports | Comments Off on April 10, 2007

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