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 »
Short Stay (We Hope)
By Margot | December 28, 2009
Sam’s ANC caught up with him yesterday and he felt low all day. Then about 8pm he spiked a fever. He so did not want to go in to the hospital. He said, “please don’t call.” We have to call of course with 101.5 but we thought we’d go through the ER so we could go home if he had enough ANC and the blood culture was ok. Luckily the ER was empty which I have never seen in all of my time taking the kids there. It was amazing. So, if you have to go to the ER during the holidays, there is that benefit. We walked right in. Unfortunately, Sam’s counts were only 280 and it bought us a couple of nights on the hem/onc floor. Sam was dissapointed but took it pretty well considering how much he didn’t want to go in. He’s was still sleeping this morning when Neil and I switched off. By the time all the residents and registration people had seen us it was about 1am last night. His WBC this morning is 1.2 up from 1.0 last night so maybe we are going in the right direction and we’ll be out of there in time for New Year’s Eve. I’m so thankful that we had Christmas at home together though that I feel greedy even hoping for New Years. I’ll be greedy for Sam though because he asked last night, “Is it going to be as long as last time?” Last time was over a week and I was very happy to assure him it would not be as long as last time. We don’t have much to get to 50o from 280.
Andy and Charlie had a good night with Dad though their clothes this morning looked an awful lot like exactly what they were wearing yesterday. I asked Charlie, “Did you sleep in those clothes?” His answer, “Yep and I didn’t even brush my teef.” I’m off to bring Sam some brunch and drop the boys at the park with the Brunettes.
Margot
Topics: Progress Reports | 8 Comments »
Merry Christmas to All
By Margot | December 25, 2009
Just a quick note to say Merry Christmas to everyone. The boys had a ball and the carnage was considerable. Sam got a surfboard and Andy got a snowboard and Charlie got a “mote control car and a mote control motorcycle” from Santa. We are dog-sitting Roscoe the beagle who is barking hysterically at the “mote control” car and adding to the general chaos as the nerf bullets fly. The boys are downstairs now with some of their new video games (luckily they were balanced by a lot of good new books) and all three very happy and very grateful this year which, as anyone with three kids can attest, is unfortunately not always a given. We had Maureen over for Christmas Eve dinner and she brought bags and bags of gifts to start Christmas early. We are trying to instill a bit of the deeper meaning of Christmas into Sam and Andy and they are getting it a little. Charlie of course is all about “where’s my next present? but his gift to us from preschool in which he describes our family was just precious we will keep it forever. Our biggest gift of all is that Sam has had a great week. He has had no pain and we have had football and soccer games at the park in beautiful weather, he plays goalie if he runs out of energy and aside from a little nausea here and there he has been wonderful all week. We even went ice-skating with Uncle Matt at the Hotel Del before he left. Ice-skating by the ocean seems so Californian but the boys loved it. Sam’s ANC was 200 on Wednesday and we started giving him GCSF shots hoping to keep him out of the hospital for Christmas so having us home and all together is so very sweet. Thanks to everyone for all your love and support this past year and hope you all have a Christmas filled with love wherever you may be.
I’m going down to start cooking and dodging nerf bullets. We will have a football dinner at the Monacos today as the Chargers are playing at 4.
Margot
Topics: Progress Reports | 7 Comments »
Getting Ready for Santa
By Margot | December 18, 2009
I just got back from Sam’s school Christmas party. He had a great time. They played the greedy Santa game and he stole the new Diary of a Wimpy kid book and got to keep it which made him very happy. It was great to watch him smile and laugh with his friends. His pain went away after the Rituxan infusion for a couple of days and then was back this morning but not too bad. He had a hydrocodone and was fine. We punted on the radiation yesterday. It was one of those decisions we made on the fly. We have been very careful ever since Sam did his first radiation treatment to avoid his growth plates. We had one doctor shrug and say, “So he’ll wear a lift in one shoe,” when we brought it up when Sam was five. Luckily, the spots we’ve radiated up until now have been just outside the growth plates. Yesterday, when we asked just before Sam was ready to go in, Dr. Murphy said, “Yes, it will hit his growth plate and I expect him to have growth issues in both the arm and the leg. The disease is right in the plate. At the time Sam had not been in any pain for two days and our thinking is/was this, since it was not palliative (he hadn’t been in any pain) and he has widespread disease we are going to have to bet on a drug to knock it back. If we find a drug that does knock it back then we don’t want him to be left with the propect of bone legnthening procedures which are horrific. Also, we can always change our minds and do the radiation at a later date.
Sam was happy that he gets to go to school all day today. We are picking him up right afterwards for a vinblastine infusion. We are hoping to gear up for some clinical trials after the first of the year. In the meantime we’ll do some ice-skating and movies and playdates over the holiday. His VMA went down four points this week so that’s good. Andy’s big soccer tournament is tomorrow. I’ll try to post an update and some pictures. Charlie had Jett over today and they had a great time. Elizabeth told me about their conversation the other day, “Hey Jett is your school stupid?” “Yeah my school is stupid.” “Do you want to go?” “No I don’t want to go.” “I’m going to skip my school.” “Yeah me too, I don’t want to go.” They are three mind you. Kelly (Jett’s mom) thinks we’re in trouble when they are fourteen. Pics below of the Charger game, Sam after he stole the Wimpy Kid book in the Greedy Santa game today and Andy getting his academic award a couple of weeks ago…
- The boys at the Charger Game
Topics: Progress Reports | 8 Comments »
Rituxan
By Margot | December 16, 2009
We are in the hospital today doing a rituxan infusion. Rituxan is normally used for NB kids to get rid of HAMA with 3F8’s. There is strong evidence though that it also gets rid of NB stem cells. Neil can send info. if you are interested. Sam came in early with Neil for his blood check and then I came and met him to take him to get something to eat while we waited for the blood work. We drove over by Wal Mart and he said, “Mom, my stomach hurts, can we just go get presents for people instead?” Sam is a great present giver. He comes up with some great ideas because he’s so observant of people. He has no regard for price of course and doesn’t hesitate to suggest big ticket items for people. We had a great time together picking out bakugans for his friends this morning and in typical Sam fashion, the minute we got back to the hospital, he said, “Now I’m hungry, can we go get something to eat?” Since his blood work was fine but it would be a while until the Rituxan came up from the pharmacy, we left again and went out to eat together. I had a lot of fun teasing him this morning and he does such a good eye roll at me that I have to laugh.
We started the infusion around 11. We’ve done one other infusion of it a couple of weeks ago and Sam had a reaction to it so we had to do an epi shot and observe him for a day. This infusion has gone very smoothly, no reaction and we are getting close to getting out of here. We’ve made quite a bit of headway on the Prisoner of Azkaban.
Sunday night Sam woke up in a lot of pain. His left arm hurt and hydrocodone alone wasn’t doing the trick. If you’ve ever been up at 3am holding your son’s hand while he writhes in pain and asks you to make it stop and you are telling him to hold on, the morphine will kick in soon, you know it is not fun. If you haven’t done it, then I never wish it on you. He stayed home from school on Monday but once the pain medication was on board he was fine and walked around and even helped with Andrew’s basketball practice in the afternoon. He’s been on and off pain meds for the last few days for his arm. We’ve upped the dose of rapa, we have radiation starting tomorrow and we are requesting a new drug, nitisinone, that our team of doctors thinks is pretty reasonable. Neil can give you more information on that one. Sam made it to school yesterday and Grandpa came and gave a talk on magnetism to his class. He was kind of embarrassed for Grandpa to come but Miss O’Donovan talked him into it and my dad was great. The kids really liked it and Sam asked him to show him some more magnet tricks last night after dinner. By the time school was over Sam needed another pain pill so I’m hoping the radiation hits it quickly tomorrow. Friday is his Christmas party and he really wants to go. His class is so awesome and so happy to see him when he comes. He had a good day yesterday. The only hard thing about school is that he knows the plans for the next couple of days and then we have to yank him out again for hospital stuff. I’m going to try and squeeze in school tomorrow between appointments so he can make ornaments Colleen said that his class has a present for him on Friday so we’ll get him there after an early radiation appointment. I have been holding steady emotionally somehow but the oddest things set me off. I was in tears this morning reading emails from the moms in Sam’s class after I volunteered to bring cups and plates for Friday and they all emailed back that they have it covered and just worry about bringing Sam.
Santa has been working very busily for our boys and to give you a clue what he’s been working on, Neil’s quote is, “Do you think the boys could just concentrate on one sport?” Grandpa has been a huge help and his poor bank account has taken a hit out here but it looks like it will be another “deprived family Christmas” as my parents used to joke when I was growing up.
Andy is doing well and looking forward to his Christmas party as well. He started basketball on Monday and had all-star soccer practice yesterday and tomorrow and then has a tournament on Saturday with four games in one day. He’s having fun with Grandpa and really looking forward to Christmas. He told me the other day that “Frosty is impossible, Mom.” I started to get a little sad that he might be figuring things out but then he continued, ” The real guys of Christmas are Santa and Rudolph. Rudolph always leads the sleigh.”
Charlie boy is good. He had two good days at school this week, he made us a Christmas present which he is very excited about and played with his buddy Hank both days.
We are finished so I’ll finish up quickly. LDH 2100, VMA 52 HVA 81.
Margot
Topics: Progress Reports | 6 Comments »