Two Hands
By Margot | February 15, 2009
One the one hand, there is our little boy full of life and fun. He went to school on Friday for his Valentine’s Day party and had a great time and got a lot of Valentine’s, got to play four square, told us all about light and mirrors in science and  cheered on his brother in basketball Friday night -Andy threw up a great shot from downtown in the beginning of the game and made it and then began chucking it up from way out the rest of the game so much we had to bug him to pass the ball. He ended up scoring twice.  Sam played on Saturday and loved it. It was 26 to 30. They lost by four and it was against the only unbeaten team in the league. Colleen and I were losing our minds yelling.  In the first half there was a long pass from one of our players down the court and Sam was running down and it bounced off his head and knocked him down, our player caught it off the bounce and scored and Sam popped up with the biggest smile on his face because his team scored. It was so cute and funny and a testament to how much he always wants to win. On an in-bounds play later Sam cut right under the basket, they pass it to him, he popped it up and scored. It may have been just my perception but I swear there was a roar from the crowd.  Sam’s smile was priceless. Â
On the other hand, there is this monster that is stalking our son. He did all of this with basically no white count (judge away if you like and after you read below, you might, but I don’t want him to miss out when he’s feeling good enough to do things) and low red blood, though not quite low enough to transfuse and platelets that were nothing to write home about. Sam has been sleeping in our bed most of the morning. He’s woken up twice to throw up and was pretty miserable this morning. I’m monitoring his fever but it hasn’t spiked yet (hovering 98 and 99). Breaking update: He just woke up and asked to play a video game and wanted to know where Andrew is so I think he might be feeling better. I knew he was feeling miserable this morning because I told him if his fever spikes we will have to go in to the hospital and he said, “That’s ok. Can some people visit me though?” Â
So we have called Dr. Willert and let her know we might be on our way in and are monitoring Sam. He looks like he’s feeling a little better at the moment On an unrelated note, he’s begun peeing blood. Started Friday night and scared the crap out of us. Then he woke up fine yesterday with clear urine, it was clear all day and he was feeling fine. Neil and I actually went out to dinner and a movie last night while Elizabeth stayed with the boys and when we came home he said, “I peed blood again.” Before he went to sleep there was a  small clot in his urine and today it’s been red all day.  This is bladder damage from Cytoxan and there is nothing to be done expect to wait for the bladder to heal itself and maybe give some extra hydration. This most likely means that we are done with cytoxan, need much more hydration and mesna with it, or will switch to something else (he responded well to irrino/temo). His LDH is down 530 (lowest it’s been in a year) but his VMA/HVA are up a bit (40 and 41 I think – don’t have them handy) right after chemo week -not really a good sign. We will hang on to LDH this week and hope for some help from radiation. If this other hand were on my body, I would surely cut it off to give Sam just the good hand.  Â
 Kelly came and picked up Andy and Charlie for the park with the Brunettes and Thomas’s.  Andy and Charlie were bouncing off the walls this morning so it’s good  they can run out some energy. Charlie was a little worried to go without me but Andy put him at ease and I played up the whole “playdate with Jett” aspect of it. He asked me, “Jett is my friend? Oh, Andy, Jett is my friend.” Because the boys are always talking about playdates with their friends. Andy and Charlie will go to Ty’s birthday party later so will be kept busy today.
 Please think good thoughts for Sam.
 Margot
Â
Â
Topics: Progress Reports | 9 Comments »
“Am I Done Yet?”
By Margot | February 11, 2009
Sam has been asking the harder questions lately. He’s asked Neil and I separately if he’s all done with chemo. He asked me yesterday on the way home from the hospital, “Mom, when I’m done with this chemo will I have, like a year off?” He wanted to know how many rounds he has left and if he has to do it for the whole school year. I think a lot of it is related to his hair. He wants to know when it’s going to grow back. I can’t tell you how tough it is to answer these questions with your heart in your throat not actually knowing the answer to any of them. Sam had to write a paper last week about being a “risk taker.”  The instructions read, “When was the last time you took a risk? Why was it important to you?” Sam’s answer read as follows: “I went to school after I lost my hair. I really wanted to go because I love school. I kept my hood on for the rest of the day. But I still had fun.”   I’m always bugging him to fill up the page and write more but I kept my mouth shut on that one because it pretty much says it all.
He is at school today with 330 ANC. He went to basketball practice last night too. It’s amazing to watch him dive for the ball, take it down and do a spin dribble and shoot it all with a big grin on his face. Their team almost won last Saturday, they were ahead the whole game and only lost by three. It was a heart breaker. Sam seems to be feeling fine with lots of energy and if he’s up for school, we want him to go. I can’t say I don’t send him with some trepidation with low counts. I told him if anyone is coughing and hacking to move to the other side of the room. That should do it, don’t you think? Ha ha. We thought we might bounce back in last night but, so far so good. His red blood is 8.5 and platelets are 77. His counts went down much faster on this round. We have another blood check tomorrow and will see where we are. We start radiation today and are torturing ourselves as to whether or not it’s the right thing to do. Logically, there are no “right” answers but …Â
On an up note, Sam has been eating like a horse and has not felt sick or thrown up yet. Amazing for him. Usually any time he gets near IV chemo he is sick as a dog and we fight to keep weight on him.  His weight yesterday was 57 pounds. His highest ever.  He’s on some supplements that we think are helping. Now if we could just find some that will keep his counts high, we’ll be good. He’s been in a great mood and did lots of homework this past weekend with Uncle Matt who was in town - after which Uncle Matt took everyone to ToysRUs and got the boys Rock Band 2.  None of us wanted Uncle Matt to get on his plane yesterday.
Andy (AKA The Mayor) had a great birthday party at Pump it Up with lots of friends and has continued his birthday celebration with Maureen on Saturday, Uncle Matt while he was here and Mimi. He’s still working to see if there are any more presents coming.  He’s been doing great in basketball, he practices with Sam and Neil’s team and our team. He holds his own with the 8 to 10 year olds. He cried when we lost on Saturday. No one is supposed to keep score in the 5 to 7s but Andy does and takes it hard if we don’t win.Â
Charlie is good. He and I had a bagel this morning while waiting for the haircut place to open. We ran into Darcy there and sat with her. Afterwards as were going over to the haircut place he said, “That was so nice of Darcy to come.” It cracked me up. Also, there was a man waiting to get his haircut talking to Charlie after he got his cut and after we walked out the door, Charlie said, “Mom, I forgot to show him my Move It Move It dance” so we went back but then he got shy and the man ended up dancing for him.
VMA/HVA that we got back this week was about the same. VMA went down and HVA went up a little . The numbers were 40 and 36. Since it was taken on week three after chemo, we’ll take relatively stable, though I would have loved to see it keep going down. The good news is that LDH from yesterday was the lowest it’s been since April of last year: 630 so that’s a good sign that this round may be working.
More soon.
Margot
Â
Topics: Progress Reports | 3 Comments »
Back from a Wonderful Trip
By Margot | February 5, 2009
Sam giving me the hang loose sign as he surfs into shore.
We are back and in day two of chemo. Hawaii, aside from an unplanned really sucky 38 hours in the Maui Memorial Hospital, was wonderful.  We had a blast and really relaxed. We weren’t ready to come home at all.  We went on  a snorkeling trip on a catamaran, saw turtles, whales, stingrays, went to a Luau, the boys took surfing lessons, spent lots of time in the pool on the slide and at the beach. We went golfing, saw the volcano, went to touristy restaurants, Bubba Gump Shrimp Company and Cheeseburgers in Paradise and generally enjoyed the whole scene. The volcano was great and the boys really liked seeing it though it was pretty cold.  Sam’s ready to buy a surfboard now. The surfing lessons were a big hit. Both boys loved it. Charlie road out with Dad on Sam’s board and liked it until he got terrified.  He made great strides in swimming and hung out at the Pirate Ship pool a lot. He also went down the big slide all by himself and Neil or I caught him at the bottom. He loved it. We got there in the middle of the night Sunday night, had a wonderful day on Monday swimming and beaching it at the hotel Monday night at about 2am, Sam spiked a fever and we wound up 45 minutes away in Maui memorial hospital calling Dr. Sholler and Dr. Willert for help. They talked the pediatrician there through the antibiotics and GCSF shots. Sam’s white count was only three hundred and it bought us a night there.  It was the only day it rained so a good day to be in the hospital but I would be lying if I said we were all looking at the bright side at the time.   We were really scared we had totally miscalculated and might be on the way down and would be spending the entire trip in the hospital.  Luckily, Wednesday dawned and Sam’s counts were 700.  The boys amused themselves with a new game they invented. They found a red sharpie and made “bloody hand surgical gloves” which then after we blew them up morphed into “bloody hand volleyball.” Nice huh? Sam had a reaction to the antibiotic and got painful red splotches all over his body. They stayed with him for the next few days and it was painful for him to walk for a while. He was okay swimming and on the beach though. He rallied like a champ and really had a good time. We went to the Maui aquarium on the way back to the hotel which had a diver in the big aquarium diving with rays and sharks. As you can see in the picture,  Sam lost his hair while there and on our way back from seeing the volcano, we had a head shaving party at a Supercuts we passed, Neil, Sam and Andy, though Andy’s hair is just really really short (about as short as it can get without actually shaving it).  He wanted to shave his head too but we thought we’d better go in steps for him.   He had a great birthday with snorkeling and a luau and is having a party tomorrow night as well.  The Westin hotel was great and we had an ocean view with a suite that they’d upgraded for us and the person who booked our room had it decorated for the boys with all sorts of sports stuff and fun stuff for them to do and she gave us complimentary spa treatments which I put to good use on the last couple of days there. We had a lot of beautiful sunsets and it was whale migrating season. We saw them jumping out of the water right from our hotel and we were up even closer on the boat we took snorkeling. All in all it was a magical trip and we are so glad we went though reality is hard to come back to.
We came in on the redeye Sunday night and got in at about 8:30 Monday morning.  We were pretty much worthless on Monday but yesterday we started chemo and today we got the radiation sim. done.  Sam is having four of the new spots radiated starting on February 11th. His VMA/HVA are going down. Numbers from the past few weeks:
              VMA     HVA
Jan 12Â Â Â Â Â 53.3Â Â Â Â Â Â 51.9
Jan 20Â Â Â Â Â Â 47.2Â Â Â Â Â Â 39.4
Jan 26Â Â Â Â Â Â 39.9Â Â Â Â Â 34.4
So, he is having a response. Hoping we’ll keep going in the right direction. Sam started chemo with a white count of only 1700 which is a bit scary to be so low on day one. Also red blood was only 9.0 so I see some transfusions in our future.  Otherwise though, he is tolerating the chemo well with not much nausea.  We got our HAMA kit from Memorial Sloan Kettering today and we are trying to figure out when and what on that front.       Â
Thanks for checking in. I’ll update more soon.
Margot
Topics: Progress Reports | 9 Comments »
Aloha!!
By Margot | January 25, 2009
We are off to Hawaii tomorrow.  We are all excited.  Sorry not to have updated in a few days.  I always think of my grandmother, Owie, who used to tell stories of my Dad as a navy pilot when he would call her the night before he had to fly a tough, dangerous maneuver like landing on an air craft carrier. She would worry all night and then he would never call to tell her how it turned out. Colleen gently reminded me today that I need to post as people are calling her to see how Sam is doing.  Sam is on day four of no pain pill. He played in his basketball game this morning and did very well. He was really aggressive and even had a spin dribble move that would have made Jordan jealous. I sometimes think his theme song should be that baseball song “Put me in Coach.” Their team, The Wildcats, lost but they all played well, they just couldn’t get the shots to fall. Sam has had good energy and been in good spirits, though he and I have struggled a bit with homework this week-writing assignments are tough. We can only assume that he is responding to the velcade/topo/cytox combination. We can only assume that because two weeks worth of VMA/HVA numbers are still pending. I’m guessing some ball was dropped somewhere with the numbers from two weeks ago but they were the Monday we started chemo so really wouldn’t tell us anything anyway.  This week’s numbers are not back yet so we will go to Hawaii with an excited, energetic boy and a lot of hope.Â
Good thing for the hope that we are responding too, because it may be a while before we do 3f8’s. The only type available at the moment are the hot antibodies. There should be more availability in the not too distant future -ha ha I used those words on purpose. Really the 3f8’s work better with little to no disease so we need to clean up Sam’s bones some beforehand anyway. The plan is to do another round of what we just did as soon as we get back and radiate some of the new spots and then scan again shortly thereafter and see where we are.
Angela, the child-life specialist from Children’s Hospital came to Sam’s class on Thursday morning. She was wonderful, so good with the kids, very informative in an upbeat, positive fashion and she deftly handled some pretty tough questions, i.e., “You said the chemo and radiation make the cancer go away but I knew a boy with a brain tumor and he died?”  Ack. She said very gently that there are many different types of cancer and many different types of treatment and quickly moved on. I pulled Andy from his kindergarten class so he could hear be there, I thought it might help him understand too. He was so cute. Angela asked “How do you think we can help Sam?” After a few kids answered that we could give him chemo or we can give him blood and she explained that you have to be older to give blood and the doctors give the chemo, she found Andy with his hand up who said, “We can make sure he has fun”- the answer I think she was looking for.  Andy also told her that he knew all about what a port was because “Sam is my brother.”  Sam had a huge smile on his face the whole time she was there. She showed the kids pictures of the hospital, a bed, an IV pole, the clinic and she brought a doll and demonstrated the port and how it worked.  All of it is so familiar to Sam and such a big part of his life that I think it was good for him that the other kids got to see it.   I had to pull him out for a radiation appointment – poor scheduling on my part- and he said he was bummed he missed the movie. Angela showed a Charlie Brown movie about a boy with cancer who loses his hair.  I told Sam I’d ask her for it the next time we’re in the hosptial.  All of the kids made cards for him and the teachers wrote really nice cards as well.  They were waiting for him on his desk when he got back from radiation and we read through them all the minute he got home.  Mrs. Abbuhl and his class even gave him $40 dollars of fun money to spend in Hawaii. Holy Cow!!   We were just blown away at how nice and supportive everyone has been. We are so so lucky with our little school. Mrs. Divicaris gave us her whole book on Maui complete with every brochure for snorkeling, luaus,etc. Â
Andy will turn six while we are there. We are going to try and go to a luau on his actual birthday and we’ll have a party at Pump it Up! when we get back. He was amazing in his basketball game on Friday night. He’s a dribbling phenom if I do say so myself (as his mother and coach I’m only slightly biased;-)). He was great on defense and made a basket.  He went on a playdate to Beau’s house today and Neil asked him at dinner, “So did you tease Maggie?” (Beau’s older sister)  Andy got a huge smile on his face and said “A course.”    He is doing great in school and is still “the mayor” everywhere he goes. As funny and mischievous as he can be, sometimes he carries the weight of the world on his shoulders.   I remember my Uncle Don telling me, “You know Andy has borne a lot of the brunt of all this.”  We all know Sam has borne most of the brunt of this but Andy has carried his fair share for sure. We are so proud of our almost six year-old.
Charlie man is funny as can be and an absolute joy.  He certainly has formed his two year-old opinions and will let you know about them. He told me the a few days ago, “Mom, I’m not cute, I’m awesome.” I just tried the mother of the year trick of driving him to sleep so I could keep packing and though he went without a nap today (I know you are cringing Elizabeth) he talked to me the whole time and finally made me laugh out loud when after twenty minutes of driving said, “Mom where _is_ your errand?”Â
A big thank you to the McKeans who sent a package for the boys tonight complete with bakugans, superheroes and a football field goal kicker that the boys have been using all night to shoot the mini-football around the house.  The awesome 12 year-old soccer playing Shelby sent a wonderful letter to Sam. Thank you so much.  Sam will write you back. And Abra’s kind letter choked up both Neil and me.  Thank you McKeans, you are wonderful.
 So, we will check back in when we return. Neil says if you need him you can find him at the poolside bar. He’s imagining him self as Steve McGarret in Hawaii Five’O I think.  I let you know if he puts any bad guys in prison while we’re there. :-).
MargotÂ
Â
Â
Topics: Progress Reports | 4 Comments »
Four Years
By Margot | January 19, 2009
 Sam in the hospital shortly after diagnosis 4 1/2
New Pics from the amazing Deb Schwedhelm
Â
Four years ago today our life did a free fall into the world of cancer. We spent the next several months in a daze trying to adjust to what cancer families call “the new normal.” We were interviewed by a production team for the annual Rady Children’s hospital gala this weekend and were asked a lot of questions about living with cancer. I keep thinking back to a quote from Spencer Dolling http://www.caringbridge.org/canada/spencer/index.htm “Apart from my cancer, you can see that I have a fantastic life.”  That is what I want and hope for Sam.
 The normal today is that I give him vicodin before he plays his basketball game. He goes up to the park with his friends to play football just like always and no one would really know anything is wrong except that he’s slept most of the afternoon before getting there and his mother gave him a pain pill so he could play.  He’s not complaining much as usual but has been up and down in terms of mood, either an angel or very cranky and he’s been sleeping some during the day. Usually after he sleeps some he wakes up in a great mood – go figure. His appetite is hit and miss. I’ll make pancakes and he’ll have one bite and then no more.
We’ve had a good weekend, been outside to the park, the Catamaran, to basketball, made two recipes from the food channel that Sam and I saw in the hopsital last week (Giada’s Citrus Garlic Chicken is awesome) and Emeril’s cheesecake(also a hit).  All the kids did really well for Deb’s pictures.  These are the first few she worked on but I’ll post more as I can. Thank you so much, Deb. You are wonderful. Sam hasn’t had much nausea but does have pain in his left leg. Still don’t know if it is disease related or Velcade related.  We are talking with MSKCC about 3f8’s. I think we’ll need much higher dose chemo before we can go but I’ll update more after we talk with Dr. Modak.
Sam is going to school tomorrow and will have chemo afterwards (his day 8 infusion of velcade). He’s on 25mg of oral cytox this week.Â
Thank you to all of the family and friends and nurses and doctors who have gotten us through this past four years. I am writing on the run as the kids are downstairs and need helmets and I don’t have much profound or inspiring to say.  Just thank you.
 Margot
Â
Topics: Progress Reports | 14 Comments »
Day Three Down
By Margot | January 15, 2009
We have been getting home from the hospital every day at around 2pm which is very nice considering that when we did Topo/cytox the last time it was a ten to twelve hour day every day.   The dose is lower than it was but we’ve added Velcade on day 1, 4 and 8.  The three chemos together seem to produce good results according to Dr. Sholler.  Sam has had almost no nausea which is great.   Yesterday and Tuesday you would have had no idea he spent the morning getting chemo.  Today though he has pain in his upper left leg and is limping a bit. This could be neuropathy from the Velcade -though I wish it were in both legs like last time, it’s started about the same time as when his legs hurt the last time after Velcade.  It could be disease because it is his left leg and there is a spot on the upper left leg. It could be that he did something to it in basketball practice yesterday. Yes, I know, you just did a double take on basketball practice but Andy had practice yesterday and we were out of the hospital and Sam wanted to play some with Andy’s team.  I always take my cues from him on any kind of activity.  Unfortunately, his leg started to hurt last night so it may not have been the best idea.  Then again, it may not have mattered. The pain could be a combination of one or two of the things I’ve just mentioned.  It’s always fun to keep guessing.   I was thinking last night that it might be easier on Sam if he was more like Stephen Hawking and his passion was physics. It’s hard to have cancer in your bones and have your passion be sports.  I suppose he is passionate about video games too. Maybe he’ll be one of those professional video game players when he grows up.  He’ll definitely have his 10,000 hours in per Malcolm Gladwell in “Outliers.”  We’ve done homework in the mornings and done legos and board games in the afternoons so he gets a bit of a schedule. Thank goodness for Legos in the hospital.
VMA/HVA from Monday is not back yet but since we hadn’t started chemo yet it’s not going to tell us much that we didn’t already know.  The official report on the scan correlated pretty much with what Neil and I saw. There is a spot on his forehead and not one on his jaw according to the report.  He has been in pretty good spirits. He was yanking on his hair yesterday on the way home and said in a chipper voice, “When’s my hair going to fall out?” He seems to have made peace with it. He had a playdate with Mack Bonebrake on Tuesday after the hospital. Lisa was going to bring Mack by but we got out so early we went over to his house. Then yesterday he got to play at Joe’s house when we got home.  He just about broke my heart on Monday night because we were talking about being in the hospital during the day instead of school and I thought we’d be there until 7 or 8 pm. I told him Colleen said Joe could come on Wednesday after school and maybe Mimi could come and that I’m sure Mack would come and visit him so he wouldn’t get bored. His face just lit up and and he said, “Really? People might come and visit me? I can bring my video games so we can play.”  We are working on getting the child-life specialist to come to school and talk about things.  Sam wants to be there when she comes to talk to his class.  The last time we had her come in first grade he did not want to be there.   I know he feels really comfortable with his class this year and I’m happy he wants to be involved. In first grade it was literally the second week of school so he didn’t know very many of his classmates well yet. Â
We postponed our Hawaii trip for a week and will leave on the 25th of January.  We’ll be there through Andrew’s birthday so I need to reschedule his party but he’s excited to go. He came home early from school today with a tummy ache but seems to feel fine right now.  Elizabeth picked him up for me.  She took Charlie to swimming yesterday and will take him to his Gym class tomorrow.   We are so so lucky she is here. Our kids have known and loved her all their lives and it’s wonderful to be able to keep things as consistant as possible.Â
We are working on several different paths for future treatment. It is quite the chess game as certain treatments leave you ineligible for other things, certain treatments risk kidney and liver function, certain treatments that look promising are not open yet but may or may not be open soon. You just can’t count on timing trials because inevitably they will be delayed longer than what was first thought.
Charlie man is cute as can be.  He gets Andy to hide with him playing hide and seek and they put blankets over themselves on the couch and then yell,  “Mom, come find us!”, so I come down stairs and see two lumps on the couch and Charlie starts giggling as soon as I pretend to look for them. Andy is doing well in school and tells me every day the score in soccer at recess. I gave him a chicken sandwich from a chicken breast the other day instead of his normal turkey slice and when I asked him how school went he said fine but “the turkey was a little stale today.”  It cracked me up.
Margot
Â
Â
Â
Topics: Progress Reports | 2 Comments »
Lunch Recess
By Margot | January 12, 2009
Neil took Sam to his last radiation appointment this morning and then he went to school until I picked him up for the dentist at 10:30.  He needed to have his cavities filled before starting chemo. Dr. Scoma gave him laughing gas but it didn’t seem to help and it was long and uncomfortable and he kept trying not to breathe through his nose where the laughing gas was coming and the doctor kept telling him to try.  Anyway, it sucked. He kept asking me if we were almost done and I kept thinking we have to be almost done. It seemed like it took forever but as soon as it was over we went to Toys R Us and found one of the last Bakugans on the shelf and got some legos for the hospital tomorrow.  We were on our way home to get something soft for lunch and drove by school.  “Mom, stop!” Lunch is still going on.  What time is it?” I swerve into the drop off section and say, “It’s twenty till one.”  “There’s still a lot of lunch left. I want to go to school.” “But Sam aren’t you still kind of woozy and don’t your teeth hurt? And you haven’t eaten anything.  Do you want to go to the cafeteria?” No way. It’s too late to eat. I want to play four square.”  I considered the fact that he will miss the rest of this week and though never before would I have sent him back to school with no lunch I thought “what the heck, he’ll eat when he gets home” and we got out and he went straight to the blacktop after we checked in with Mrs. Abbuhl. He is extra bummed about missing tomorrow because it’s P.E. day. Â
I lost it this morning when telling Mrs. Abbuhl he’d be out for the rest of the week. It was deja vu because I did the exact same thing with Mrs. Gage when we relapsed two years ago both times after telling myself not to cry the whole way in. Anyway, I’m glad Sam got to go back. He had such smile on his face. His ability to bounce back practically makes me ashamed of myself.
I am gearing myself up mentally for the trip to New York in a month or two months or whenever we can go. We’re going to try and take the whole family. The kids always say they want to go and I know there is plenty to do. I loved going there when I was eight to visit my aunt when she was writing for The New York Times. Boy, do I miss her! I’ve been there many times since for work and such but it was awesome when I was eight. I keep trying to sing Frank Sinatra’s “New York New York” to myself but I keep thinking of that old Kurtis Blow song (you won’t know it unless you went through a rap phase ;-)). The only words I remember are the very beginning of the song, “New York! Cold! Hard! City!” I’m only thinking that because of the treatment and side effects.  We will make it an adventure and hopefully it will knock back the NB. As usual though, I’m several steps ahead of myself.  We need to have much less disease than we have now and I should focus on getting through tomorrow and the rest of this week and the next couple of months first.
We’ll get the official read on the scan tomorrow. Though really, why bother?
Margot
Topics: Progress Reports | 7 Comments »
The Gameplan
By Margot | January 12, 2009
(written by Neil and Margot)Â
For those keeping score, we are planning on topotecan, cytoxan, and velcade.  We will do a few cycles and plan on it being the entre’ to MSKCC in New York City for the 3F8 antibody therapy.   We are still hoping to go to Hawaii though will postpone it by a week so that it falls in week three (the good week). Dr. Sholler thought that would be all right.
We had a great day today up at the park with the Bonebrake boys and then watching the Chargers – Steelers game, though it broke Sam’s heart — he vowed that when he grows up, he will be a Charger and make them win :)  We walked home from the Monacos and he ran the whole way.
The protocol above requires 4 full days every 3 weeks in the clinic so Sam will miss school and he is pretty bummed. We sat him and Andy down and told them that we will need to be spending a bit more time than usual in the hospital for IV chemo to help beat back the bad guys. Sam cried when we told him. We hugged him and told him we will be with him every step of the way and we will make it as fun as we can. The only thing he wanted to know was when it was going to start and then he let us hold him for a while and then wanted to play his Madden Football video game.  Mimi came over and cheered him up and he sounds happy as a clam down there now.  We, on the other hand, had to go upstairs and pull oursleves together. We told him that he might lose his hair and that he and Dad and Andy could get matching mohawks if they wanted. Andy is thrilled to say the least. Â
People have asked what they can do and there is nothing really at the moment but we will try not to be shy about asking. Andy will need fun; Charlie will need fun; Sam will need fun. For Margot and I, we’re doing ok. Sometimes it is tough to breathe but we’re going to try and make sure we take care of ourselves which means running, eating well and the usual.  We have so many research ideas that are coming down the pike from peptide hormones, sonophotodynamic therapy, oncolytic virus trials, and other agents that look promising, that we have a lot of hope. The personalized medicine program at Vermont is going full-bore and we have even had Sam’s protein and gene expression analyzed in the UK to help guide treatment. If you have extra money laying around (doesn’t everyone in this economy?) please donate to our foundation(www.magicwater.org) — it all goes to research institutions and the grants are directed by the parents. We don’t have a signature event but every little bit helps. Since the fund was established in June 2007, we have raised over $900,000.
 Thanks to everyone for the kind comments and emails, they have lifted us up and helped immensely.
Neil and MargotÂ
Â
Â
Topics: Progress Reports | 11 Comments »
Ugh!
By Margot | January 10, 2009
I guess if you look on the bright side, there was no ambiguity. We won’t spend the weekend wondering. NB is having a field day in Sam’s bones.  There are several new spots. Left leg has 4 spots total, two up near the hip area, one above the knee and one below, right leg has spot below the knee. There looks to be a spot on the jaw and one on the top of his head. High dose chemo is in our very near future.  We don’t know if there is any soft tissue disease but we go back tomorrow to rescan his abdomen.  Right now he is downstairs excited to watch his brother play his first basketball game and can’t wait for his first game tomorrow. It was Charger spirit day at school and he is all decked out in his Chargers gear and very happy and energetic. You’d never know his little legs are coursing with cancer cells. Insert swear word here.  Don’t need to tell you what a shift in gears is going to happen soon.     I’m off to coach the Red Spitting Cobras and will be using my compartmentalizing skills to their fullest.
 Sorry to write and run and be so blunt but didn’t want to leave everyone hanging.  Will update more this weekend.
Margot
Â
Topics: Progress Reports | 20 Comments »
Going into Scan with Crappy Numbers
By Margot | January 8, 2009
Monday’s VMA: 42.4 HVA 44.7  Crap. Crap. Crap.  Sam is still feeling pretty well, though off and on has mentioned pain in a spot on the back of his head.   He’s also been a little sleepier than usual but then we are getting him ridiculously early for radiation so, factors, factors, how many factors  can I come up with?  Plenty of course but deep down Neil and I are bracing ourselves.
I forgot the SSKI drops that protect Sam’s thyroid and delayed us at the hospital for an extra hour for the injection. Loreen and Melissa were great about it and let Sam watch a movie in the empty scan room while we waited but  I was so flustered and mad at myself running down to the pharmacy to get the drops.  Argh. We are home now and Sam is working on his math test that he missed this afternoon.
He got an award on Wednesday at school for being an enthusiastic learner, he was so cute and proud up on the stage with his award. He’s been working so hard at school and vision therapy.  I’m so mad at this stupid disease as it keeps ripping the rug out from under him.
Margot
Â
Topics: Progress Reports | 10 Comments »