Home Again Home Again Jiggety Jog
By Margot | February 3, 2010
Just a quick update to say that Sam walked (albeit slowly) out of the hospital this afternoon after they discharged us. His fever and neuropathic pain has resolved for the most part and we are all now home again together. I feel a little bit like we’ve been on a yo yo hospital stay lately and it’s nice to have us all under one roof again again.
Margot
Topics: Progress Reports | 12 Comments »
OK and BMX and much later ER
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.
birthday boy
a few of the boys
Charlie boy rocking the training wheels
Sam brave and determined
Sam and Dad
family
Topics: Progress Reports | 10 Comments »
HAPPY BOYS
By Margot | January 24, 2010
Sam came home yesterday afternoon. Thank you nurse Sheila for working so hard to get us out of there. The boys were so happy to see each other yesterday afternoon. Neil brought Andy and Charlie out to meet the car. Andy said earlier in the morning, “I’m going to be so happy to see Sam when he gets here I’m going to want to jump on him, but I won’t because he’s still in some pain.” They were laughing and smiling at dinner last night and Andy and Charlie were bouncing off the walls. It was great to hear Sam laughing with his brothers and to see him smiling this morning. He had a good night last night with no break through pain, a little bit of neck pain before he went to bed. He’s hobbling around the house this morning and wants to go out to breakfast. His appetite has been awesome. While he was in the hospital, he sent me out in the pouring rain for babyback ribs, In and Out Burgers, French Toast, etc. and the great thing is he was actually eating it. He got platelets on Friday night in anticipation of going home. He’s needing platelets about every three days. A transfusion gets him up to about eighty five and then by day three he needs another transfusion. His face is still a bit swollen and he’s had neck pain lately (may be neuropathy pain from the velcade so we put a warm pack on it (and or a bath) and that helps. His face is still pretty puffy and his belly is big. He is breathing a little harder though his oxygen levels are still 100%. It’s not noticeable really unless you look for it. He seems to be taking a deep breath with every breath but he’s not struggling to breathe at all. He seems great this morning, and just having him home and out of the hospital bed is fantastic. We are taking things one day at a time, or trying to at least. He is on several lower toxicity drugs that work well on Sam’s cells in the lab (thank you Dr. Sholler and Erika) and we are lining up some new things for next week.
He did a lot of art in the playroom while we were in the hospital and he and I stopped on the way home at ToyRUs for some bakugans and more art supplies. Sam is a really patient and detailed artist. The playroom volunteers were really impressed with him. I was thinking of asking Mrs. Meara, our art teacher, for some project ideas while he’s home. Charlie is here wanting to put the computer on “spell mode.” He likes to type his name over and over. He’s recognizing all of the letters now. He’s a little sponge these days. He likes to spell everything before he says it. He’s not usually close, he’ll say, “I want my MYOWQ basketball shoes on today.”
Please keep all of our NB friends in your thoughts and prayers, Erik Ludwinski, Jack Bartoz, Sydney Dudley, Melina Riniolo and Patrick Chance in particular this week/month. Thank you to everyone for all of your help, listening, running errands, etc. Don’t know where we would be without the monster support of our friends and family.
Margot
Topics: Progress Reports | 18 Comments »
Working Towards Getting Sam Home
By Margot | January 21, 2010
Sorry about the radio silence. Sam has a good couple of days. He slept through the night once we upped the pain medications and added Decadron and the chemo. Probably a combination of all of it helped to make him feel better. Yesterday he was in the playroom from two to four and six to eight. He can stand up and walk a little bit better. We have had some great movie nights and chess games. The pain team started him last night on oral continuous medication instead of IV but they left him the pain button in case he had break through pain. This is in anticipation of going home. Last night he was restless and uncomfortable and pressed his pain button twice. He didn’t seem to want to and we kept trying pillows under his knees so this morning we upped the dose of the oral medication and he seems very comfortable today. We have been back and forth to radiation in the ambulance since Sunday and the ambulance guys and nurses have been great. They like Sam a lot. He’s sitting here next to me playing Mario Soccer. I got him some food from the cafeteria for and afternoon snack and he just said, “The cafeteria is evil, don’t go there anymore. Can I have some of Grandpa’s baked potato?” (Grandpa made him a baked potato yesterday and we have left over in the fridge). He’s eating well, the steroids have done wonders for his appetite and really helped with his pain. We are hoping to head home within a few days.
I owe a million people Thank yous and I won’t get to them all so to everyone who has helped out this past week, Thank you. Thank you. A special thank you to Robert Lawless who gave us two awesome tickets to this past weekend’s Charger game. He walked into the lobby of the hem/onc building and said he wanted to give the tickets to a family who needed them. Dori in the front thought of us and I came out and told him that I wasn’t sure if Sam would make it to the game but that my seven year old would love to go and he gave me the tickets. I thanked him over the phone and he said it was his birthday present to himself. It was a wonderful thing to do. He sure made Andy’s birthday month. Andy got to go with Maureen and boy was he excited. We bought him a prepaid cell phone in case he got separated and he called us all about fifty times to tell us what was happening and where he was. We debated telling Sam about Andy getting to go but in the end figured that we (Andy) couldn’t keep it a secret from him and when we told him he was really bummed he couldn’t go. He didn’t want to talk to Andy at all any of the times he called and said he didn’t want him to bring him anything back. Then when the Chargers started to lose, he got a smile on his face and said, “Let’s call Andy.” and when they lost he said smiling, “It must suck to be at the game and have the Chargers lose.” I know it sounds awfully mean but it was very funny. So, it actually worked out well for both boys. Andy got a great day and it wasn’t too hard on Sam.
Thanks to Cathy and Colleen for helping me laugh through our tears.
Also, thanks to everyone who is helping with all of our errands and helping to plan Andy’s BMX party which is going to be the biggest pain in the butt party for the parents ever. My friend Cathy thought maybe we should just top it all off and give a live goldfish as a party favor. Sam said if he’s home on the pain pump he’ll just put the backpack on the handle bars and hold onto his lines so he can ride. Our boy is down but not out.
Sam is getting platelets again today. His platelets are 11. All other blood numbers are holding steady and white count is nice and high. His scan showed disease all throughout his liver and a couple of spots on his lungs (though not totally certain those are NB. Working on a low toxicity treatment plan for liver mets.
Hoping to be home soon and back at some fun.
Margot
Topics: Progress Reports | 21 Comments »
Hard
By Margot | January 17, 2010
We have had a hard couple of days. Sam had an awful night on Thursday night with abdominal pain and leg and arm and rib pain. We admitted him on Friday morning and he is on a pain pump. Once he got the pain pump going he was able to eat and play chess and happily listen to a lot of The Goblet of Fire. Last night he was uncomfortable again and he and I were up quite a bit of the night pressing the pain button, getting extra boluses from the nurses and trying to get him comfortable and unsweaty. He ran a fever of 102 and so the nurse and I put ice packs in pillow cases all around him and rubbed him down with cold wash cloths both of which made him feel better. We upped the continuous medication this morning and he is doing a bit better today. His legs are very bad and it was evident in the scan why. His knees and the area just above and below them are full of disease. The rest of the bony disease did not look as bad as we thought it would be. It looked better than the Philadelphia scans in terms of his thighs, pelvis and upper arms, they seemed pretty clear in this scan, though there are spots on the shoulders, one on the chest and one on the pelvis from what I could see. The very bad news is that it looks at though there is liver involvement but we don’t know the extent of it yet- haven’t received the final report. He is doing a CT scan now with Neil to confirm. They let the boys in for a visit today and they all played video games. Sam’s right eye is swollen again and so he was trying to play by squinting out of one eye but was game to do it as usual. We played some Trivial Pursuit Junior and then Charlie and Andy got a bit loud and Sam lost his patience. Neil took them to Dave and Busters for a while to do something fun with them. After they left Sam beat me at chess. We had a conference call with Dr. Willert, Dr. Roberts, Dr. Sholler and Dr. Durden this morning and after discussing options we decided to start Doxitaxil (I think) and velcade today. Shelia hung it about 4pm. Dr. Sholler is working on testing different agents with Sam’s cell line. Fortunately or unfortunately his cells are growing beautifully. We are so lucky to have her in our corner. We are grateful to our team for their time this morning. We will be doing emergency radiation to Sam’s knees tomorrow to try and help him out of pain. He is getting platelets later tonight as his platelets were 13 today. He has stem cells in reserve if we need them. He is generally not in good shape but has been so sweet and happy once his pain has been under control. It was 5 am this morning after we’d been up every hour or so together and I heard Sam out of the blue say, “Mom, what exactly is a hurricane?” It cracked me up since most of our conversations had involved where it hurt and how to solve it. He also when he finally got comfortable said, “Goodnight, Mom, can you please wake me up early enough to finish watching the movie with you tomorrow?” It was funny because it was 5:30 in the morning and he was so sweetly saying goodnight.
Neil and I have been through the wringer and are pretty emotionally spent but are better and more optimistic today since Sam’s pain seems a bit better. Thanks to everyone and I’m sorry to have waited until today for the update. My Dad and Stephanie are coming in on Monday to help out since we will probably be in the hospital for a while.
Margot
Topics: Progress Reports | 47 Comments »
Up and Down Days/Scanning Tomorrow
By Margot | January 14, 2010
Sam has had up and down days in terms of pain. On Saturday we all went for breakfast at Konos with Vickie Buenger, the inspiring Erin’s mom, http://www.erinbuenger.blogspot.com/ and got to spend some time with her at our house. Vickie, so great to get to see you. You were such a hit with the boys. Sam used the king square in chess you taught him to catch his dad’s pawn on Sunday. Tanner came over afterwards and I took him and Sam and Andrew to go and see Avatar which they all thought was awesome. Sunday he played baseball at the park with everyone and though he didn’t run, he stood and hit the ball and walked well. By Monday though, I thought I ought to write a post titled “Full Circle” as we had come back another 180 degrees to a somewhat painful day. When Sam has not been feeling well he has only wanted quiet and to be read to and me or Neil handy immediately when he needs us. We finished up The Prisoner of Azkaban and have started on The Goblet of Fire. Sam wants us to lay next him as much as possible and the bath still seems to help him painwise. Tuesday again was a good day and he walked some at the beach Tuesday night and we were thinking he might even go to school on Wednesday and we were talking about baseball. His pain has been moving from one arm to the next and the leg pain seemed to have gone away so we were hopeful that it was tumor kill. Yesterday morning he woke up and his arm hurt too much to go to school and by yesterday afternoon, his leg pain was back with a vengeance and he said his whole body hurt all over. I spent much of the afternoon trying to get his pain under control. I’ve learned this morning from the pain team that I probably overdid it a bit with the long acting stuff because if it all peaks at the same time we might be in trouble that we don’t want to be in. She said Sam probably has a tolerance for a lot of pain meds but that we should probably up the dose instead of giving more of them at staggered times. He slept most of last night but needed another pain pill at 4am. Today it just seems to be his left leg and he is better than yesterday. Maureen came over yesterday afternoon and spent some time with us and Uncle Matt showed up later. Sam’s LDH is 3700 and his HVA/VMA is 92 and 117. We had been told that the earliest MIBG we could get was mid-February but then the nurse called yesterday and said she could get us in Friday at 4 and for the scan. We had the injection this morning and were hoping to do vinblastine today. We didn’t do it on Monday with Rituxan because Dr. Willert was worried about Sam’s platelets. They were 70 but only because of the transfusion he had the previous Friday. Today they are only 39 so we are too low for vinblastine again. We are sitting in limbo now. Neil has been working tirelessly on an alternative plan. It may involve gleevac but we are not sure.
Andrew and Charlie have been hanging in there. It’s been tough on them to be home when Sam is feeling rotten because they have to stifle a bit and if you know Andy and Charlie well you know that they are not all that stifleable. Thanks so much to the Brunettes for taking them both to basketball on Monday night. I sat and read to Sam which as nice and quiet. We actually took Andrew up to the park on Tuesday night in the dark and I had him run from the car to the light ten times. He thought it was great fun. I brought Andrew in to the child-life specialist on Tuesday to have his own time to talk to someone outside the family about things. It worked out well and he really liked it. Heidi said he’s a great talker and he told me he had a lot of questions for her. We set a time for every Tuesday and he’s working with Heidi on a book about himself. Unfortunately his therapy hour has also had the affect of planting into his head that Sam gets all the attention and he doesn’t get any. This thought has been driven home to him in the last couple of days because Sam has been in pain and is getting most of the attention from us and has been demanding it. We have been trying to steal time with Andrew and reassure him how much he is loved. It is a tight rope.
Charlie has been happily rolling along having playdates with Jett and playing with Elizabeth who I credit totally with keeping his routine and happy attitude consistent . He seems to be becoming less shy and coming out of his shell some. He actually went to playdate at Jett’s house with no fuss at all on Saturday while I took the boys to the movie.
Please say some prayers and think good thoughts for Sam. I will post after Sam’s scan on Friday. Andy has a basketball game immediately following so it may be late on Friday night. Things have been so up and down that it may be that tomorrow things are totally different.
Margot
Topics: Progress Reports | 16 Comments »
180 Degrees
By Margot | January 9, 2010
Sam is studying angles in math and we talked this week about what it means when someone does a 180 so I thought it a good title for this post. After a sleepless Thursday night where we were chasing pain and trying to get Sam comfortable we had a long day in the hospital yesterday where Sam got platelets, hydration, x-rays and a pain team assesment. Our friend Joanne, the parent liason tried to talk to Sam about ordering a wheel chair and he was having none of it. We read the The Prisoner of Azkaban (almost finished now) about the Hogwarts exams where Harry and crew have to perform magic to pass and I felt as though I were having an exam on patience. Sam was difficult, weepy, tyrannical and demanding between bouts of just complainy (all drug and pain induced). In the afternoon I was reaading to him and he wanted me to sit next to him on the bed on the side of his pump becasue that was most comfortable. I had to crawl underneath his platelet lines and then about an hour later I got up for something for him and ripped the needle right out of his chest and it left a long scrape down his chest. He had a new dressing that’s kind of like a band-aid and easier on his skin but it comes right off. I’ve never done that in five years and I was shaky and Sam was shaky and scared. We had to reaccess him and the achohol swab totally stung and I felt terrible and like a total idiot. He was fine long before I was. Neil and the boys brought the Wii in the evening before we went home and Sam started to perk up a bit. The pain team put him on continuous release oxycontin which Rebecca the nurse said is “the happy drug” vs. morphine and prednezone. We also gave him his first dose of nitisinone yesterday around noon. When we packed up everything to leave at around 6:30 Sam did the most amazing thing. He got out of bed and he walked to the car. He was limping and a little out of control from being so weak but it was the first time he’s walked in a week. On the way home he sad, “Did Dad give me a new medicine today because my legs feel much better?” This morning he woke up and was happy as a clam. We had an early morning chess game and then Andy and Charlie came down and I was in the kitchen and Sam did something else he hasn’t done in a week, he laughed. I didn’t realize what music that is to my ears or the fact that I hadn’t heard it in a while until he did it. He is walking/ limping again this morning. I don’t know if it’s the happy drug or the nitisinone (yay Neil) or the tamoxifen or the sulindac, or germanium or the rapa or the vinblastine was causing some of the leg pain or working and it was tumor kill (yes, the Hutchison phamacy, like Charger bench is very deep) or a combination of everything but we’ll take it. If there is a better example of a 180, I don’t know what it is.
Just two quick quotes I wanted to put down. Thursday night in the middle of the night when I was trying to help Sam find a comfortable position after Neil had spent the first half of the night doing so. We got him to where he felt better and he said, “Mom,” I said, “Yeah, thinking that he was going to ask me to move his pillow or arrange the covers, “Do you know in the new iCarly?” “Yes,?” Carly kisses Freddy so that means that both she and Sam will have kissed him. Remember the one where he and Sam kissed?” So this is what Sam is thinking of at 3:30 in the morning after he’s found a comfortable position. Also, Andy and I were talking about his sports party he was joking and said, “Yeah see if you can get Roger Federer, David Beckham and Kobe Bryant to do the party for us. Ha Ha That would be great.” and this morning when they were all talking about what kind of dogs they would be Andy said, “Charlie would be a poodle because they are all girls.” Qoutes from Charlie this week pretty much all involve, “Roscoe, Rosky, Ros.”
Thanks to Uncle Andy and Grandma Sara for all the UT hats the boys look great in them and were wearing them for the game. We were rooting for them. Too bad the mean evil Alabama pulled it out. 
Happy Saturday and thanks for all of the prayers and kind comments during this rough week.
Margot
Topics: Progress Reports | 13 Comments »
Pain Seems to be a Little Better
By Margot | January 7, 2010
Sam seems to be doing somewhat better today. He slept through the night last night which was not the case on
Tuesday night. We were up most of the night trying to get a pain med combination that would let him sleep. We’d give him something and then an hour later he would wake up again. We were thinking about admitting him for pain when we seemed to hit the right combination at around 4:30am and he slept straight until 10:30. Last night he slept through the night and woke up around 6:30 -always a good sign. I gave him his two oxycodone pills and he is listening to Elizabeth read his social studies book about The Pony Express right now. Either the drugs or the social studies will probably put him to sleep shortly ;-). He has jaw pain and his jaw even looks a little swollen. This is almost certainly a side-effect of the vinblastine but it’s a pain because he just eating smoothies today. If you are looking for a high calorie smoothie, come have breakfast with Sam. If it has a high caloric content, I throw it in there. He’s still not walking very well and Charlie and Andy have to really careful about hitting his legs or his arm but I’m going to go out on a limb (ha ha nothing like stupid dark humor) and say that the pain is getting a bit better. It may be that we have him drugged up enough that he is comfortable but he’s not having any break through pain which is good. When we were doing the MIBG treatment and he was having so much pain in his leg, I was very skeptical that it was tumor kill but sure enough two days after the treatment and some awful pain, he seemed to be better. I say that because it’s my disclaimer for saying that we are hopeful that the increased pain from Monday and Tuesday may be tumor kill from the rituxin/vinblastine/rapa combination because he’d been off it for a while because of neutropenia. I still don’t have a scan schedule but Dr. Willert is working on getting them done as soon as possible. Because of some dogged persistence on Neil’s part (and I mean really dogged)Nitisinone is arriving tomorrow. Sam would be the second kid to try it for NB and it’s relatively non-toxic so please say some prayers that it actually works. After the scans we will discuss other possibilities though it gets dicey because most trials require us to be off of chemo for at least three weeks.
When Sam was going through stem cell transplant at The City of Hope there was an eighteen year-old boy in the room next to us. He was not an NB patient. I don’t actually remember what kind of cancer he had. His mother asked if I would like to go down for coffee one morning while Sam was asleep. Over coffee she asked how Sam was doing and I told her and I asked how her son was doing and she told me he had a fungal infection in the brain. I naively asked how that is treated and she said, “They can’t treat it. There is a blood brain barrier that stops any medication that could help from entering the brain.” So I asked what they were going to do and she said in a deadpan voice, “He is going to die.” I was relatively young in my NB experience. I was rendered speechless and I remember wondering how she could just say it like that. Now I know that it was not her but a numb, foggy, robot person who took over to protect the real her from having to feel what those words meant. I know this because the numb, robot me kicks in a lot when Sam is in pain, especiallly when I have to go from planet cancer to planet normal. I was waiting for the gates to open to pick up Andrew at school on Monday and a mom in Andrew’s class asked, “So how is your other son?” The robot me said flatly as if I were reporting the weather, “He is at home with a lot of bone pain.” She was clearly shocked and was fumbling around for some way to make it all right that I could just come out and say that( or at least I think she was and I don’t blame her) and said, “Well, he’s probably a pretty resilient kid right? He must just roll with the punches.” The robot me gave the expected answer and said, “Yes, he is an amazing kid.”
He was on the verge of spiking a fever last night and was hovering right around the “go to the hopsital number” and we told him we might have to take him in and he didn’t want to go at all. He had me put on a short sleeve shirt instead of his fleece pajamas, put a cold pack on his head and took off the blanket he had on. A half hour later his fever was down and stayed down all night. Neil and I were laughing about it this morning.
I’m off to pick up Charlie boy from school. We are sitting Roscoe the dog, for a week and Charlie just adores that dog. He follows him around and sits and pets him and says, “Roscoe, you are a king dog.” I brought Roscoe with us to preschool drop-off this morning and told Charlie how much Roscoe wanted to go to school but he’s only a dog and he cant’ go. It worked right up until he had to let go of the death grip around my neck and be handed over to his teacher.
New drug on the way. More soon.
Margot
Topics: Progress Reports | 9 Comments »
Back at It
By Margot | January 5, 2010
We were in the hospital all day yesterday getting Rituxan and vinblastine. Sam’s pain returned on Saturday and has been getting worse in the past couple of days. He’s been on hydrocodone and prednezone and yesterday when we got to the clinic his arm was hurting so badly that he got a dose of morphine. We met with the pain team (it was actually just one nurse practitioner but she’s part of the pain team). She thought Sam should be on something around the clock for at least a few days. We started yesterday and switched to morphine at 11:45 as he was having some wicked pain. Denise from the pain team said that around the clock meds will improve Sam’s general level of comfort and that’s it’s better to just give it on a regular basis as kids can be stoic (Sam) or learn to live with a certain level of discomfort (I’m sure Sam) or just not want to say anything (Sam on Saturday after 36 holes of miniature golf,”I didn’t want to tell you my leg was hurting until after we went miniature golfing so you didn’t change your mind.” ) I just spoke to her again and we came up with a morphine oxycodone combo for him. He is very worried about not being able to play baseball this spring as he’s been really looking forward to it. We are working on a plan and trying to get Nitisinone approved through our insurance and should be starting that soon. We are also looking for other alternatives. He and I did some homework this morning and now he is playing chess over at Billy and Vickie’s house.
Andy went back to school and had a pretty good day but got his card pulled for “goofing around”. He had basketball practice last night and is trying to decide what to do for his birthday party. He’s suggested a party at Disneyland or taking everyone snowboarding both of which made me laugh out loud. I guess you gotta start big but I was thinking more like a sports party at the park. Charlie started back at school today and the whole way there kept saying “I want to skip.” I left him crying at drop off again but hopefully when I pick him up he’ll be in better spirits. Sam’s become a chess addict. He played chess against Uncle Matt last night and won and he beat me yesterday in the hospital. He has been playing against the computer on a website Neil found him after reading an article about the new 19 year old phenom who learned by playing the computer and now is the chess champion of the world. None of us can beat the computer on easy but it’s teaching the boys some good moves. We’re still working through Prisoner of Azkaban but have been only reading a few pages at a time because the boys were going to bed so late over the holiday.
Sams white count looked great yesterday, red blood was 10.5 and platelets 80 so his counts have come back up nicely. It is hard to ignore the wolves at the door when Sam is in pain. It takes the breath out of me to watch our nine year-old get into the bath/come down the stairs/get into bed as if he were eighty-nine. He is walking better today and after radiation his arm should feel better. It’s crazy to me how his pain goes from zero to sixty. One day he’s walking and playing fine and then bam! the pain is waking him up. He’s 26 kilos so we met with the nutritionist yesterday as well and we went over all the high calorie options for him. I sliced up an avocado with his dinner last night and am going heavy on the cream. He weighs less than Andrew and I can feel it when I pick them both up.
Margot
Topics: Progress Reports | 7 Comments »
Happy New Year’s Eve! 100 Wishes for Sam
By Margot | January 1, 2010
Happy New Year’s Eve! Sorry to leave everyone hanging. It was a short stay in the hospital and we were out on Tuesday afternoon. We spent the afternoon at the beach at low tide passing the football around and today the boys were at the park all day with a passel of kids, Monacos, Brunettes, Bonebrakes, and us and they had a ball (literally) playing kickball and basketball and baseball and soccer. Sam is feeling good and in good spirits - a good way to roll into the new year. We are working on getting scans scheduled for next week or the following. I actually would rather be fat, dumb and happy while Sam is feeling good but on the other hand… I’ll post the scan schedule when I have it.
When I think of 2010, I think of our very special Christmas gift given to us by Sam’s teacher before the holidays. It was a beautiful little book with 100 wishes for Sam. There is a wish on each page from each kid in the two fourth grade classes and all of the teachers and the principal. I had a hard time not crying when I was reading it with Sam and I started all over again looking at it just now. The wishes are just awesome, “Dear Sam, I wish you could come to school and be with us everyday.” “Dear Sam, I wish you could play soccer and four square with us everyday.” “Dear Sam, I wish that you would never have to be in the hospital again.” and one of my favorites from Tanner, “Dear Sam, Don’t feel left out even if you’re not with us, because we’re thinking about you.” The teachers and principal wishes were so sweet and thoughtful, “Dear Sam I wish that you could realize how much you are loved and thought about each day. God Bless.” Thank you Miss O -we really cherish it.
I hope that everyone’s wishes come true in 2010 and most of all that the wishes for Sam playing four square and soccer and going to school come true as well.
Margot
Topics: Progress Reports | 8 Comments »