By Margot | February 2, 2010
Charlie will proudly tell you that he can spell both OK and BMX.
Sam had a pretty good week last week. He didn’t have any break through pain that was not controllable and slept through the nights and was generally up and around. He’s on 20mg oxycontin twice a day. He got platelets on Tuesday (11) and Friday (14) and had IVIG (I think that’s it - helps with one of the immune system functions that is affected by rituxan) and IV vitamin C on Thursday. He had a horrible reaction to the IVIG (I think that’s the wrong name and I’m channeling my mother. Neil will cringe but it’s the middle of the night so I’m not going to wake him up to get the right name.) Sam had violent chills and spiked a 104 fever. Dr. Willert gave him some extra oxygen and we thought we might admit him but he was back to normal with some solumedrol and a couple of hours. So very happily after a long day waiting for platelets on Friday, he was home for Andrew’s birthday weekend extravaganza which I will get to in a minute complete with pics. Sam’s LDH dropped to 2400 which is funny to say but it was as high as 6000 during the very bad week when we were in the hospital. He didn’t make it to school at all, I don’t think he’s up for a full day at school in any case but we were going to try and get there Friday but the platelets took much longer than expected so we missed it. Sam is really hoping to go some this week. He and I have been watching a lot of Foodtv in the clinic. We like Chopped and America’s worst cooks. He finished up radiation to his legs and is walking much better.
On Wednesday the kids have a half day and Sam was feeling pretty good so we all picked up Andy and went out to lunch and to buy him a BMX bike. We went to the bicycle warehouse where the kids can ride around on the bikes before they buy them. All three kids rode around the bike store on different bikes and Sam said his knees didn’t hurt at all. I was in a dilemma as to what to do about Sam and the BMX party and had several back up alternatives (movie with Mack and Tanner and Joe, Movie and wii night at Mack’s house with his friends. He insisted he wanted to go to the party though. We tanked him up on platelets on Friday and I figured we’d just see how it went and we could hold on to him if we needed to. We bought Andy a very cool BMX bike that he was thrilled with. Friday on his actual birthday Andy woke up and opened his presents from Grandpa and Grandma Joan. Grandma Joan got him some very cool clothes and Grandpa got him a Lebron James jersey and he put it on immediately to wear to school. It was funny, I had to talk him into the new long sleeve shirt underneath it. Grandma Joan and Uncle David were here which was very nice and fun for the kids. We brought brownies (Andy’s favorite) for his class and we all went to Pernicanos ( a local pizza joint that is very kid friendly) for the party before the party on Friday night before the basketball game and had pizza and cake number one. Sam stayed on my lap for much of the beginning but then ate with the kids in the boat and hung out with them once the food came. Andy had a great basketball game and made one basket. He shot about 100o times and lately he keeps shooting from as far out as possible with a baseball throw so he can make a “long shot.” I’m sure it’s driving the coaches crazy.
On Saturday morning we did a trial run at the bay with the bikes and Sam did fine on his bike. The party started at 7 at night and as soon as we got there and we saw the track I was thinking there weren’t enough pain pills in the world to make it a good idea for Sam. In true Sam fashion, he did it anyway. Andy had the first lap and he was pretty nervous sitting there listening to the rules staring down at the first big hill. I have to say there were some shaking six/seven year olds. Andy made it through the first lap with one wipe out on the hill. Sam wiped out twice on his first lap because he didn’t make it up the hills and I yanked him off the course and after he sat on my lap for a while he said he wanted to try it again and Neil ran with him the whole way and helped him up the hills. He did about three or four laps total and did fine. Neil ended up taking him home early and despite my worst fears of a bad night to come, he was comfy on the couch when we got home. Colleen joked with me the next day, “Maybe you should take him parasailing today” I didn’t catch the “today” part and said, “Yeah maybe that’s a good idea, maybe that would be gentler on him.” She was kidding of course. To Sam’s credit and iron will, almost all of the kids wiped out on the hills their first lap and I think all of the parents were thinking the whole thing was going to be a disaster. They all got the hang of it after that and ended up having a blast. Andy did lap after lap and was the last guy out there still doing the last lap at 9:15. He said it was the best birthday party of his life and now several of his friends want to have their party there too. He said on Sunday as he and I were throwing the football and he threw a perfect pass, “I like myself at 7, did you see that pass?” He and his Dad went out yesterday and threw the ball together for a while which was good. Charlie was out there on his bike with training wheels and Uncle Matt and Uncle David and I ran with him the whole way to get him up the hills. Uncle David said he kept saying, “I don’t need your help, get away from me,” and then he’d get to a hill and turn around and say, “I need a push” and then as soon as he was up the hill he said “Get away from me, I don’t need your help.” Charlie gave me and Uncle Matt and Uncle David quite a workout. As I was huffing pushing him up a hill, he said, “I like the up and down of this.” He didn’t even want to come in for cake until much later.
I’m posting pictures below of the party but am actually finishing this post up in the ER. Sam spiked a fever last night around 12:30. He had velcade and platelets and IV vitamin C in the clinic yesterday and we knew his ANC was good so I thought we were in for a quick blood culture and a turn around home but his fever didn’t go down after tylenol, it went up to 103 and he started to hurt all over (velcade neuropathy I’m sure but pretty severe) and his oxygen levels dropped. So they put him on some oxygen and gave us a chest x-ray. One of his lungs sounds a little crackly and he was on some pain meds so the combination may have caused oxygen levels to go down. Anyway, we are going to stay here. There is no room in the hem/onc ward so they are sending us to the IMU (intermediary medical unit) but there are no beds there either so we’ve spent the whole night in the ER and now it’s 7am. Sam’s sleeping peacefully now and I’m guessing they’ll send us up shortly.
Never a dull moment.