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.” Â
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. Â
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. Â
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.Â
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.Â
We are finished so I’ll finish up quickly. LDH 2100, VMA 52 HVA 81.
Margot
Topics: Progress Reports | 6 Comments »
Making Watermelon Punch
By Margot | December 11, 2009
First of all, thanks for all of the kind comments and offers of help. Just being home has given us all an enormous emotional boost. I’ve made some headway on Christmas (and work) in the past couple of days and am feeling much better.  Sam was set free on Tuesday afternoon and we all went to Andrew’s Christmas pageant that night. He sang beautifully – even the dreidel song ;-). Wednesday, Sam went to school and his entire class roared when he came in. It was the loudest “Sam!” with lots of hugs and high fives. His class is just awesome. He was so happy to be at school. We had Tanner over after school and went out to lunch (half day) and played with him all afternoon. Grandpa came in on Wednesday late afternoon and we went and got our Christmas tree and decorated with Grandpa, Uncle Matt and Rosco Wednesday night. We put on Christmas music and the boys did a great job with the ornaments. They are very excited about Christmas.  Charlie had a great day at preschool on Thursday and though drop off was tough, he was happy and talkative when I picked him up. Last night was Sam’s Christmas pageant and he did so well for being out for over three weeks. He came home from school and practiced Jingle Bells on his recorder all afternoon with Mimi as his music teacher.  It’s great that we have our own recorder expert next door. She took him from zero to near perfect in one afternoon. I marvelled at how hard he worked at it. About an hour before we had to go his head started to hurt and he asked to take a bath. I was afraid he wouldn’t make it but I gave him some Tylenol and then a half of a decadron (decadron has Tylenol in it so if you’ve already given Tylenol, the most you can give is half of a tablet). Anyway, that seemed to do the trick and he said he wanted to go. “After all that practice….”  He was happy to be there with all of his buddies and Colleen and I almost cried when all of the kids linked arms and sang Auld Lang Syne. Sam jumped up onto the top row and told me later, he didn’t want to put his arms around the girls so he jumped up where his buddies were.  It made me laugh.Â
This morning he went to two hours of school and then we went to the hospital and did a blood check and vinblastine infusion, and to check the trough for rapamyacine.  Grandpa came with us and Sam was back to being annoyed at having to miss school which is good. He hasn’t had any pain at all today. His LDH was 1700, platelets 93, hemoglobin 11.3 and white blood 1.4.   They ordered the wrong VMA/HVA test on Monday and only the HVA came back. It is 78. Highest ever. We did a repeat of the test today but that number sure drives a stake of fear through our hearts.
Please think good thoughts for a pain free Christmas.
Margot
Topics: Progress Reports | 5 Comments »
Our Comeback Kid and Smashing Watermelons
By Margot | December 8, 2009
I know that I am sorely overdue an update. Sam is still in the hospital but will be going home today. He’ll be on IV anti-biotics for a couple of more days and then oral anti-biotics. It took until about two days ago for his eye to start looking more normal.  Bright light bothered it and it hurt mightily until about three days ago. Even after his eye stopped hurting so much his leg and his head were giving him a lot of pain. He wouldn’t put any weight on his leg.  He has been off of morphine for four days now and was just getting decadron for pain for a day or so. Now, he has been totally off pain meds now for two days. We gave him vinblastine on Friday and that seems to have really helped.   The doctors didn’t want to give him anything until the infection cleared up because he needs his counts to fight it.   So on Friday when it looked much better we gave him the vinblastine. It seems to have worked wonders unless all of the pain was infection related and he just needed to get past it. Not sure how that would be for his leg.
Sam needed blood a couple of days ago as his hemoglobin dropped to 7.2.  His platelets had gotten as high as 140 but had been dropping even before we gave vinblastine. They are at 63 today so still pretty good.   Dr. Kim is going to test him for the anti-platelet antibody and see if that is what is going on. ANC is 3,000 so we are ok there. LDH is down to 1600. Funny to say down there but it had been as high as 3500 last week so have been cut in half. VMA and HVA are at 29 and 31. Frankly we were bracing ourselves for much higher than that.
Sam has been listening to us read a lot. We finished The Chamber of Secrets and are half way through The Prisoner of Azkaban.  The past couple of days he has been up for watching movies and has mostly been out in the lobby playing board games with Joe and Uncle Matt and his brothers so he is ready to go home.  Because we did Vinblastine we have to wait at least three weeks for the IV Fenretinide if we are going to do it. We have second guessed ourselves a million times but the fact is that Sam’s pain stopped the day after we did Vinblastine so I think it was the right thing to do.  We had a radiation consult yesterday and drove in the ambulance through he pouring rain to UCSD. Sam thought it was fun and we were laughing a lot on the way over.  I was telling him about Andrew who, when I asked him what he was singing in his Christmas pageant he said, “Frosty, Up on the HouseTop and some stupid song about a cradle.” Sam thought that was funny. Andy meant dreidel of course. Now that Sam’s leg is no longer hurting we are not sure about the radiation either but we marked it. Dr. Mundt and Dr. Murphy are waiting for the latest scans from Philly and then we’ll see if we move forward.
My state of mind last week was pretty much flat out panic. I think Neil and I were/are both parents on the verge of a nervous breakdown. However, now that Sam is not having any more headaches or leg pain and his eye is back to normal, LDH is dropping and c-reactive protein is down to 3.9 (it was in the 20s) and we are going home things are looking much brighter.
I kept thinking of a proverb that one of my authors told me a few weeks ago, “if you try to carry three watermelons, one of them is going to smash. I think that is a very true proverb although it is more like all three will smash with me. I was making a work call yesterday in the ambulance trying to get something finalized and not having anything in front of me to reference I was thinking how totally insane it was.  I’ve owed Andrew a date night to see Fantastic Mr. Fox and Charlie a date to the zoo going on two weeks now. I need to make Charlie some more school play dates as he is still having a hard time at drop off and told me last night. “I quit on school mom.” I haven’t done a thing about Christmas.   Our dear friends Monica and Larry picked up the shoes I was supposed to be buying for the African immigrant family that Charlie’s preschool is adopting and last night I got an email saying that one of the mom’s has had a great idea and could we buy some socks to go with the shoes.  Ack. So there it is - smashing watermelons all over the place but right next to me is a little boy very happy to be going home today and out of pain so I have no real reason to whine and complain.   My Dad is coming out this week and it will be great to have him here.
My Christmas wish of course is that this comeback is long lasting.  Thanks everyone for your help and prayers.
Margot
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