April 3, 2007
By Margot | April 3, 2007
Number update: Yesterday’s LDH: 567 (better) Last Week’s VMA 8.1 (very normal) HVA 10.6 (just above normal but we’ll take it) Weight 20.8 kilos (woohoo! That’s almost 46 pounds -more than Sam has ever weighed in his life) We are on day two of chemo and since it’s Spring break for Sam and Andy we’re going in early in the morning to do the infusion so we can do fun things in the afternoon. It’s only a half hour infusion but with yesterday’s blood check, doctor check and general waiting around we didn’t finish until 1pm. I thought today would be in and out since we were already accessed but there weren’t any beds when we got there and then they couldn’t find a syringe pump and so it was three hours. Jess promised tomorrow would go faster. All that grumbling aside, Sam is feeling good and is very chipper.We all went on a bike ride last night with Sam Andy and Dad on bikes and me on roller blades pushing Charlie in the jogging stroller. The boys had a ball and now that it’s lighter later hopefully we can do more of that when Neil gets home from work. He took Sam and Andy to Meet the Robinsons last night with Mimi so the boys had a full day. It almost made me think this week we are living the rosy picture Time Magazine painted in this week’s edition about living with cancer. They failed to mention of course any of the tougher pediatric cancers. Read the rest of this entry »
Topics: Progress Reports | Comments Off on April 3, 2007
March 27, 2007
By Margot | March 27, 2007
Sorry for the lack of update. Sam is doing well. He got a blood transfusion yesterday after coming home early from school yesterday. Thank you blood donors! He perked up quite a bit after the transfusion and is in school today. He has a school play tonight and we are all going to see him. Grandpa and Stephanie are in town so they will come too. I can’t wait. I think Sam’s part of the chorus. His platelets were 54 yesterday so we’ll do another blood check on Thursday to see if he’ll need platelets. They may not be recovered enough to start chemo again next week. It’s his spring break so I know that will suit him just fine. His buddies are going places and he said he wants to go to Disneyland so we’ll see. His LDH ticked up a bit yesterday to 604. It’s still well within the normal range but Neil and I like to see it in the 500s as when we relapsed it was in the high 600s and low 700s. I know parents who’ve had kids with six or seven times the normal range are probably laughing at us but all the same, I’m waiting for Amy at the hospital to call me with last week’s VMA/HVA numbers. As of yesterday they were still pending. Read the rest of this entry »
Topics: Progress Reports | Comments Off on March 27, 2007
March 15, 2007
By Margot | March 15, 2007
We are on day three of chemo today. We didn’t start until Tuesday so that we could do two big blood draws on Monday and Tuesday for the naturopath so he can measure all kinds of things in Sam’s blood. The blood draws were very very involved and the nurses at Children’s San Diego were awesome. They worked their tails off on Monday helping Neil get everything in order and looking up what needed to be drawn, etc. We can’t thank them enough. Neva especially, you are a star!
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Sammy is still feeling pretty good. We are doing 30 minute Topo infusions and a Cytoxan pill at night. We cut the pill in half this round because his platelets, stomach and body in general got so beat up the last round. I don’t know if it’s the megase, the artemisinan, the lower does chemo, or the combination of everything he’s taking but he looks and feels great. He’s feeling so good this round that he went to soccer practice yesterday after chemo. Lance Armstrong, eat your heart out! I told him he didn’t have to go and that if he did decide to go, he could just watch on the sidelines whenever he needed to. He ran around with the other kids the whole time. He never ceases to amaze me. People may think we’re crazy to let him go to soccer practice right after chemo. He was even accessed. But the joy on his face on the soccer field is a thing to behold, even though he’s not the fastest or the strongest. I remember when we were first starting chemo and I was reading other kids web sites and I’d read things like they sent their son or daughter to school with a low white count and I thought, “Wow, these people are crazy!” Now, thinking back to that, I only wish I’d done more of that. The funny thing was that Sammy bounced back into the hospital whether he was out and about or home sitting on the couch reading books and playing video games and seeing no one. It’s just what his little body did. So, at this point, I’m going to let him do whatever he’s up for. Neil is a great soccer coach. The kids just love him. He’s got so much energy and he tackles coaching with the same intensity he tackles everything. I have to remind him sometimes that the kids need a water break every now and then. Their team got crushed in the first game of the season on Sunday. It was really ugly – something like 13 to zero. We knew we were in trouble the minute we walked on the field because these were big kids who looked like they’d been playing together for years. The kids had fun anyway though. Read the rest of this entry »
Topics: Progress Reports | Comments Off on March 15, 2007
March 9, 2007
By Margot | March 9, 2007
Wohoo! HVA: 8.9 VMA 5.1 LDH 550 Pop open the champagne and have a good weekend. We sure will. Those are all NORMAL numbers. I’m running around today but will do an indepth report soon. First soccer games are on Sunday
Margot
Topics: Progress Reports | Comments Off on March 9, 2007
February 26, 2007
By Margot | February 26, 2007
Three little words that put a spring into our step and a smile on our face: SAM IS EATING!! We started Megace on Saturday morning. After we’d gotten the boys new soccer cleats and been up to the park to practice soccer moves, I brought Sam and Andrew with me to the grocery store. All of a sudden, Sam said, “Mom, can I open these bagels now?” Of course, I tore the bag open immediately and handed him a cinnamon and raisin bagel. Then he said, “Can we get a sample of cheese at the deli and a cookie at the bakery? He pretty much has not stopped eating since. He woke up this morning and asked for a grilled cheese and tomato soup for breakfast. He is at school today which is big. He really didn’t want to go much at all last week. I took him on his field trip and he just sat on my lap most of the time and didn’t interact with the other kids a whole lot. It broke my heart a little but I think he was just feeling crappy and he wasn’t eating anything at all. I could see that he just didn’t have much in the tank when he went to play in the park. He came back after a mintue and sat with me. He wanted me to stay with him at school so I volunteered in his class in the mornings on Thursday and Friday (again I do not know how Mrs. Gage keeps a straight face- I really had to stop myself from laughing out loud several times) but Friday when I left he came with me. He just didn’t want to stay. Today he seemed happy to go and he has so much more energy. Also, I’m not sure if it’s because he has more energy or feels better or it’s a side effect from the Megace but he’s been a in a really happy mood. Read the rest of this entry »
Topics: Progress Reports | Comments Off on February 26, 2007
February 16, 2007
By Margot | February 16, 2007
Everyone is feeling better this week. Sam was well enought to start chemo on Monday. I forgot we had the day off from school so we went in early, got the doctor check and got started with IV Topetecan early that day. It’s nice because it’s only a hour to an hour and a half after school vs. a long eight hour day. Sammy takes a 50 mg Cytoxen pill every night and we will continue that for 21 days but today is the last day of IV Topetecan. This combo is supposed to be less toxic but it’s still taking a toll on Sam. His stomach is upset we are struggling to get him to eat. He ‘s home from school today as he was pretty wiped out but made it to most of this week. It was tough on him because Little Joe was on vacation and he missed him. Also, I don’t think he was feeling that great. We’re going in this afternoon to get pamidronate (sp)?(a biophosphinate similar to zometa) that will theorectically stregnthen Sam’s bones so that no new tumors will grow. We’ll also get our last IV Topetecan. So it’ll be all afternoon. Read the rest of this entry »
Topics: Progress Reports | Comments Off on February 16, 2007
February 16, 2007
By Margot | February 16, 2007
Everyone is feeling better this week. Sam was well enought to start chemo on Monday. I forgot we had the day off from school so we went in early, got the doctor check and got started with IV Topetecan early that day. It’s nice because it’s only a hour to an hour and a half after school vs. a long eight hour day. Sammy takes a 50 mg Cytoxen pill every night and we will continue that for 21 days but today is the last day of IV Topetecan. This combo is supposed to be less toxic but it’s still taking a toll on Sam. His stomach is upset we are struggling to get him to eat. He ‘s home from school today as he was pretty wiped out but made it to most of this week. It was tough on him because Little Joe was on vacation and he missed him. Also, I don’t think he was feeling that great. We’re going in this afternoon to get pamidronate (sp)?(a biophosphinate similar to zometa) that will theorectically stregnthen Sam’s bones so that no new tumors will grow. We’ll also get our last IV Topetecan. So it’ll be all afternoon. Read the rest of this entry »
Topics: Progress Reports | Comments Off on February 16, 2007
February 9, 2007
By Margot | February 9, 2007
Best laid plans…..
All three kids are sick and coughing up a storm. Dr. James thinks Charlie has RSV which is going around. He was wheezing a bit and coughing, though the past couple of days he seems to be getting better. He’s still in a great mood and since he’s healthy otherwise and big for his age, Dr. James thinks we can just let it run its course without steroids or any other treatment. I think he’s on the back side of it now anyway and has been sleeping much better. Sam had a low grade fever on Wednesday night and fell asleep at 6:30pm and slept all night. I’m not a fan of low grade fevers and a lot of sleeping because it reminds me of right before Sammy was diagnosed and I panic. So, you can imagine my relief (ha ha) when he spiked up to 103 yesterday morning. I took him in to the hospital. We were due to start chemo today but will not since Sam is sick. Since we had such strong anti-biotics last week for pneumonia Sam is pretty well covered for anything bacterial. His white counts are at 16,000 (enormously high) and showing that he’s fighting it off. His chest sounds junky but it is all throughout his lungs and not in one particular spot (which would indicate he might still have some pneumonia). Dr. Roberts is pretty sure what he has is viral (seeing as Charlie has RSV a reasonable assumption) and he said we could go home and didn’t have to be admitted. Hurray! Andrew woke up yesterday with a fever and feeling miserable. He and Sammy mostly just laid around yesterday. They are all three still coughing but I knew we were going to be in better shape this morning when Andrew woke me up at ten to six by poking me in the face saying “I’m hungry, will you make me some apples and peanut butter?” and Sammy woke up and wanted to put on his Ninja turtle outfit. Sam is missing his field trip today to a dance studio. I was supposed to drive for it. It would have been so cute but he’s happy to be downstairs playing with Andrew and had a great week at school before he got sick. The plan for chemo to take an intermediate path before switching totally to oral chemo. We will keep the IV Topetecan which is only an hour infusion and take the Cytox orally. He can do the infusion every day after school and the plan is to start on Monday with that for five days and see how he tolerates it. I’ll pick him up early Monday from school so we can do a doctor’s check before starting and Dr. Roberts can give us the ok. Read the rest of this entry »
Topics: Progress Reports | Comments Off on February 9, 2007
February 1, 2007
By Margot | February 1, 2007
Sammy is home. We got home yesterday morning. He did have pneumonia in the right lung but tested negative for all the really nasty types of pneumonia and is responding to the antibiotics well. He’s downstairs playing with Andrew right now. We’re keeping him home from school for the week and then he should be back in action next week.
My aunt and grandmother both died yesterday and there is a big hole in Neil’s and my heart today. I’m scrambling to get ready to go to New Orleans and Austin. Neil will stay with Sam and Andy and I’ll take Charlie. Thanks to everyone for all the kind emails and phone calls and for all the help this week. The plan is start Sammy on oral chemo next week.
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Margot
Topics: Progress Reports | Comments Off on February 1, 2007
January 29, 2007
By Margot | January 29, 2007
Happy Birthday Andrew Paul Hutchison!
You are four years old today. We love you and we are so proud of you! I can’t believe that you are four and then again, I can believe it, because sometimes you act like you are twenty. I’m know I’m not supposed to label, but you are FUNNY. So many times in the past two years when I have desperately needed a laugh or a smile it is you who provided it. Your sense of fun and adventure and DRAMA keeps us all laughing and on our toes. You have a vivid imagination and you love to dream. A lot of times when I’m driving you somewhere and you are quiet in the back seat and I say, “How are you doing back there Andy Boo?” Your answer is, “Stop talking to me, Mom, I’m dreaming.” You have a definite ear for language and can already imitate people and accents spot on. Your Spanish accent is flawless at age four and your vocabulary is amazing – though your favorite word right now is butthead (thanks Dad). You are a monkey in the trees and love to climb to dizzying heights that make Dad and I very nervous. You love to play chase (or actually be chased is a better way to describe it). You love to scare yourself and when we are in Blockbuster you always pick out the titles with blood and gore on the cover and say in a very scary low voice with a dire expression on your face, “Look, Mom, Dad, a grrrooosss moooviie! That’s too scary for me.” You come up with funny questions like, “Mom, does Yoda speak Spanish?” You are very perceptive. When Grandpa was out and you and Sam were fighting over something and you were especially hard on Charlie and Grandpa said, “Andrew, stop that!” You looked right at him and said, “Grandpa, you are not enjoying us.” It cracked us all up. You have an amazing way of disarming angry adults into laughter.
Topics: Progress Reports | Comments Off on January 29, 2007