Cystoscopy Today and Pictures from Deb
By Margot | October 2, 2009
Sam is having a cystoscopy today. You can learn about the procedure here: http://www.urologychannel.com/diagnostictests/cystoscopy.shtmlÂ
It’s my fault we are doing it today because Neil and the urologist wanted to do it last week when we were inpatient and I didn’t want to put Sam through it thinking things would clear up but unfortunately they haven’t. He’s still bleeding and having a lot of clots.  I feel terrible because if we’d have fixed it last week, he could have had the whole week of school. Argh.  The urologist told Neil yesterday she thinks she can see a spot on the ultrasound that may be causing the clots so maybe she can go in and cauterize it.  He is missing his field trip to the air show today and he missed school yesterday. He said to me, “I just wanted one week of school. One week. Plus I told Tanner I’d be there all week.”  I feel terrible. I didn’t think last week that there was any assurance that the cytoscopy would help but if she thinks she sees the spot then it probably will.  He had a great week at school. It is a lesson in the simple things. Sam is happy just to go to school and do normal kid stuff.  We unhooked him from his home hydration to go to school and then hooked him back up after school. I sent him to school with a huge water jug to finish before the end of the day which he did but it didn’t seem to help much.   Some days it looked better and then it would get worse. The upside is that he was and still is feeling fine. No pain, did all his normal stuff (except soccer which he was bummed about). He caught up quite a bit in school and now he’ll be out for two more weeks as he and Neil leave for Philly on Monday. Mrs. O’Donavan got everything ready and we have a big folder of stuff to keep him up to date -which we can start on as soon as I finish this update.   She also sent a huge book of MadLibs. Thanks, Mrs. O’Donavan. Sam’s friend Parker came to visit him yesterday after school and made his day. They played air hockey and ping pong and guitar hero in the playroom.  Neil spent the afternoon after work playing chess with him and Andy and Charlie came up last night with me and we all read a Zack Files Vampire book.   Joe might come up to see him tonight. He’s been pretty upbeat for most of two days. He and I stayed up last night after Neil took the boys home and played chess and talked. He was so sweet when Neil left he said, “Thanks for playing chess with me today, Dad.”  He is NPO this today. The procedure is at 2:40 so we woke up at 6am so he could eat something. He said as he was eating. “Thanks for waking me up Mom.”  He made me laugh because he said, “For some reason the only things I like that don’t make me throw up from that cafeteria are the biscuits and the bacon.” That was his breakfast today.   He’s going to be David Beckham Halloween.
Andy and Charlie are doing well. Andy had soccer practice yesterday and he ran himself ragged. His coach is going to be out of town on Saturday so Neil is going to coach his game.  He is everywhere the ball is, all over the field.  A mom came up to me at school and said her little girl whispered to her the other day, “Mom, I’m going to say hi to my friend, and pointed at Andy and then she got too shy and said there were too many people around.” I asked Andy who she was in his class and he said, “How do you know her?’ I said, “Oh her Mom said she wanted to say “hi” to you the other day.”  He sighed and said, “Looks like I’m going to have the same problem as last year with girls.” It was funny. He wants to be some wierd Yu Gi Oh guy for Halloween. Sam is going to try and talk him out of it though as he and I looked at costumes online last night and Sam thought the costume was too strange looking.
Charlie missed preschool again yesterday -he missed last Thursday too. Instead he came with me and Sam to the hospital. Sam likes having him around and since he won’t go to preschool without me….  I tried to read him some books and sing songs with him while he was here before Elizabeth came so that he got some preschool-like experience.   He cheers Sam up a lot. He cracks me up because he’ll tell me when I’m putting him in the car somewhere, “Mom, me and Sam like to do this.” and then he’ll make some crazy face or slap his behind and laugh really hard.   He did have a good day at preschool on Tuesday, he sang and finger painted and he and I actually saw a butterfly pop out of it’s cocoon which was a pretty neat moment to catch. Anyway, I was thinking he might be ok with me leaving him there eventually but since we missed yesterday not sure how Tuesday will go. He is going to be a PowerRanger for Halloween. They are his new obsession. He picked out PowerRanger undies when we were potty training and then Elizabeth got out all of the boys PowerRanger stuff to encourage him and now, we all get to watch all those fine PowerRanger movies for another year. Yeeks.  He sings the SPD song really well.
So, I’ve made you wait for Deb’s pictures but here are some of the ones she sent us early. It’s so tough to pick.   I know this is stating the obvious but she is so gifted at capturing people. Thank you Thank you. Deb. Also, we did take some Mom/Dad picks with Andy too. Those aren’t back yet. Charlie wasn’t cooperating by that time so we’ll have to get those next time.
Please think good thoughts for Sam’s procedure today and that we stop this darned bleeding. Â
Margot
Topics: Progress Reports | 12 Comments »
Happy Friday
By Margot | September 25, 2009
We got back VMA/HVA numbers today: 11.1 VMA and 14.1 HVA. These are the lowest Sam’s numbers have been in a year!   We are over the moon. Sam is home from the hospital but still on hydration so no school or soccer.  We talked Dr. Willert into letting us out yesterday on home hydration so we could do pictures this morning with the awesome Deb Schwedhelm. Though yesterday Sam was still bleeding quite a bit and had a lot of clots, we redid the ultrasound which looked totally clot free and today his urine is almost clear- still pink but nothing like the solid red we’ve been seeing. So, we are in good shape.  We might go out to the school fundraiser tonight or perhaps a little of the USD soccer game.  Sam has a backpack full of IV fluid that he’s carrying around. It’s super heavy when it’s full and Sam was huffing and puffing coming up the stairs last night after waving off any help. So, I told him that’s how football players get strong muscles by going up and down stairs with heavy stuff on his back so he’s happy he’s growing big muscles.   We unhooked him for pictures this morning, Deb was so so great with the kids. I can’t wait to see the pictures. We took them at the beach and the kids wanted to take some with their feet in the water. That degenerated quickly and all of the kids were thoroughly wet by the end. Andy was actually swimming in his clothes. Sam had to keep his port dry as he was accessed but he got as wet as he could have gotten and Charlie got totally soaked and then was miserable in his wet clothes.  Sam’s lobbying to get unhooked for the school funraiser now that he knows it can be done so we’ll see if we go for an hour or so.   His platelets are 59 today so he’ll probably need some by Monday. Hopefully Monday we’ll get unhooked and deaccessed, tanked up with platelets and he’ll be able to go to school for the rest of the week. It would be nice for him to at least get four days in since we are leaving for Philadelphia a week from Monday. He and I got into some awful power struggles over homework in the hospital but he sat down this afternoon and did quite a bit so hopefully he’s not too behind.
Hope everyone has a wonderful weekend. We certainly will. News couldn’t have been much better with numbers close to normal!! Thanks to everyone for their kind thoughts and prayers.   I have one last sort of crazy request, if there is anyone who knows Japanese, we are trying to track down a drug called cepharanthine. It’s Japanese and I think any info. on the web is in Japanese.  Cathy’s dad said he would look into it for us so we have one line on it.  But if anyone knows of it or of course, happens to have any lying around in their junk drawer (ha ha) please let us know.
Margot
Topics: Progress Reports | 18 Comments »
“Why Does Sam Get All the Lucky Stuff?”
By Margot | September 23, 2009
We are in the hospital with red pee. Sam has been peeing blood continually since Saturday and though we called in on Sunday as soon as they saw his urine sample Monday morning we were admitted.  He played soccer on Saturday and probably was dehydrated from a week at school not drinking enough and then a hot soccer game. He got blood and platelets on Monday. His LDH was 667 (or something in that range) so it’s creeping up a bit. Yuck. Anyway, he’s otherwise feeling fine (except for throwing up some yesterday after eating a hospital cafeteria lunch) and wants desperately to be back in school. Neil spent Monday night with him and I came in yesterday to tears because he did not want to stay another night. The good part about it is that we’ve got the penthouse suite. They put us in the old playroom after initially putting us in with a roommate who had a family that must have been chain smokers because even the nurses and Joanne, our parent liason were overwhelmed by the smell of cigarettes after walking in there.  So the old playroom is huge big room and since Sam doesn’t have a fever or anything the boys have been in the actual new playroom every night from six to eight playing air hockey tournaments with the other kids and doing art projects. We are almost always here for fever or some other thing that they don’t allow us in the playroom for so this has been nice for the kids on the scale of hospital visits. Meredith brought up Luke yesterday and he and Sam played Wii baseball and had a lot of laughs.
Last night as I was walking Neil and Andrew and Charlie to the car before they went home. Neil said to Andy, “Hey do you want to see a picture of your brother with a penguin?” SeaWorld came to the hospital yesterday and Sam got to pet a penguin. Andy looked at the picture and said, “Why does Sam get all the lucky stuff?” Neil said “because he gets all the unlucky stuff.” I said, “Andy, Sam would trade all this lucky stuff in a minute not to have to be in the hospital.”  That stopped Andy in his tracks and he thought about and said, “He would? You mean not to have the bad cells in his body?’ And I said yes. My poor little boys who have to grow up so fast. I don’t think Andy had ever thought of it like that and frankly I don’t know that Sam thinks of it like that. I do know that all he wants to do is get back to school and play kickball and recess ( I think it has replaced four square this year). He was so so bummed that he missed PE yesterday. I am hyperventilating that he’s falling behind in school already but Mrs. O’Donavan has been great and sent home some work with Andy and gave me Sam’s math test to do here. She said that because he missed the whole review day I could help him a bit with it.   He did pretty well on his own though I did help him some.
Neil got Andy off to school fine this morning and Elizabeth is home with Charlie. Charlie’s second and third days of preschool went well because Mom attended with him the whole time.   Though I was trying to counsel myself that this is great time for me to spend with Charlie, I have to say that three hours of preschool is a long time for Mom. ;-) He ventured a little further from me yesterday but panicked when he couldn’t see me.
Please think good clear pee/get out of the hospital thoughts and prayers for Sam. He so wants to be out of here.  The urolgist saw him yesterday and was mostly worried about clots and said hydration should help.  In the past hydration and platelets have done the trick pretty quickly. This is the longest continual time he’s gone but this morning looked a little better. Two minutes ago a team of urology residents came in and wanted to wake Sam up to examine him and I said, “No, the urologist examined him yesterday.” One of them was a little overzealous and was asking me all about MIBG therapy and what it is and I mentioned something about Vermont and she said, “Well I need to know why you’ve been to so many places, you’ve mentioned Vermont and Philadelphia.” I was tempted to say, “Oh we just enjoy traveling so much that we try out different hospitals.”  I didn’t though, I was polite. Then she said, “And Dad? Is he in the picture?” I was thinking, “Who are you, the social worker, I thought you were a urology resident?”  Anyway, I ushered them out shortly thereafter. I try to be understanding about the whole teaching hospital idea but starting from square one with the residents every time drives me a little crazy.
Margot
Topics: Progress Reports | 16 Comments »
Charlie’s first day/forty minutes
By Margot | September 15, 2009
Charlie on his first day. Not happy
Charlie on the bike ride after he escaped from preschool
So, I thought I was going to post today on a silent house and the significance of Charlie’s first day of preschool. But alas, Charlie had other plans. I knew we were in trouble when we started talking about it this morning and the first thing he said was, “you are not going to go home without me right?” “You aren’t going to leave me there all by myself?” I stayed with him for the first twenty-five minutes and he kept trying to drag me out of there. When I finally got to sit and play with some clay the teacher said she would take over whenever I was ready so I handed him to her and he screamed bloody murder. I went next door and hung out in the library for twenty minutes and then Tina came and said, Charlie’s not calming down, you’d probably better go back.  He was haning out by the gate waiting for me.  I thought I would stay with him but Becky said maybe try again on Thursday and so we went home forty minutes into the big day and went for a bike ride.  The bike ride went well and it was a beautiful day. Charlie’s is getting great on his bike, he zoomed down the big grassy hill like a kamakazie pilot. I’ll plan to stay on Thursday and see how it goes. I keep thinking of an author I used to work with who said his mother became a preschool teacher because she ended up staying every day.
Sam is doing well. He got both blood and platelets yesterday. He was still borderline for blood but we thought we might as well tank him up. He perked up afterwards and bopped around the house last night until ten o’clock saying he had too much energy from his blood transfusion.  He got to watch the Chargers win which I would crow about except that it was kind of ugly.   I saw him at school today when I went to help set up his FM system (which still isn’t working) and he was very happy and having a good day.   He’s finishing up The Island of the Blue Dolphins himself and really liking it.  It’s nice to have him want to read by himself after I’ve read some.   He played goalie in his game on Saturday and saved a few goals and was scored on once. He also played defense and did all right.  He has practice today which he chose over going to the Padre game with some awesome tickets offered by Joanne at the hospital. He is worried about going back to Philadelphia and I’m trying to reassure him about that.  I’m going to see if his teacher will let him email the class.
Andy scored twice in his soccer game on Saturday and was very happy that they won. After the game he said, “We’re undefeated!” Pretty funny after one game. Though I don’t get much out of him about school he is liking it too.  He came to the hospital yesterday after school to keep Sam company while he was getting transfused and chatted up all of the nurses.  He and I have been having some after school dates at Mr. Frosty dates but I think I’ll have to volunteer in his class to get the skinny on what’s happening in his class. That’s how I always got Sam’s info.
Anyway, things are good in our not silent house. LDH yesterday was 612 - holding normal.
Margot
Topics: Progress Reports | 5 Comments »
19 and 19
By Margot | September 11, 2009
Those are our VMA/HVA numbers from Monday. Just got them back. Yeah Baby!Â
Sam is at the hospital getting blood. Wednesday’s red blood was 7.8 and platelets were 65 so we’re starting to drop. I’m picking up Andy from school and going to meet Sam and Neil at the hospital. Neil said Sam is one mad guy for being picked up early. He does not like missing school. He loves his new teacher and has a few good buddies in his class and he’s just happy every day I pick him up. His highs at dinner have been “the whole day.”  He’s eating tacos for breakfast, lunch and dinner which is funny but at least he’s eating. I think he needs spicy.
All three boys had a great week.  Andy loves his teacher too and showed us all the class pet ( a lizard).  He and Sam have recess together but not lunch. They’ve been playing kickball at recess. They’ve had two after school pool parties (one from Andy’s class last year and one for Sam’s soccer team) and soccer practice and those on top of all the preschool stuff  makes it seem like the school year pile up of events is starting.
If you ever do a business deal with Charlie when he’s all grown up you can be safe in the knowledge that he’s a man of his word. We had his open house for school on Thursday and we went and bought some underwear, put them on and he’s been diaper free ever since.  I’m sort of stunned but very happy. He’s been so cute and he and I had a good time playing at his open house together and the preschool picnic but he’s not very responsive to any of the teachers or kids yet so we’ll see how it goes next Tuesday. He had Jett over for a playdate this morning and they simulated wipeouts on their scooters just so he could go into his three year check-up all bruised up on his legs. He is 107% height according to Dr. James.
I’m going to run to pick up Andrew. I was almost a little scared to post this update since it’s all good news and I don’t want to jinx anything but there I’ve done it. We’ve had a great week and since I can contrast it to two weeks ago in Philadelphia, I am appreciating every second of it.
Sports report on Monday. First soccer games tomorrow.
Back from hospital. Didn’t actually get blood. 7.7 red blood 43 platelets, appt.Monday
Margot
Topics: Progress Reports | 13 Comments »
First Day of School
By Margot | September 8, 2009
The boys on their first day of 1st and 4th grade
Ready to go!
Charlie having a blast flying in the pool – courtesy of Uncle Tom
Sam playing golf
Andy golf
Charlie ping pong
Sam in cooking class
Andy mixing it up
Â
We dropped the boys off for their first day of school today. I can’t believe it.  They were very excited and a little nervous. Sam couldn’t sleep last night. I’m really happy with both of their teachers this year and think we hit the jackpot with both of them. Sam’s 4th grade class has 32 kids this year. He’s only ever had twenty so we’ll see how it goes.   Tanner is in his class and and a lot of other kids he knows so I think he’s pretty happy. They don’t have his FM system set up yet but his new hearing aids make such a difference in what he can hear that I think he’ll be all right for a few days. We did a hearing test last week and it was amazing how well he did repeating words back, I’m hoping it’ll translate into a much easier time in school.Â
Sam’s been feeling really good the last week. His appetite is back and he’s been up for lots of golf, tennis, soccer and swimming.  On Sunday the boys did their first 18 holes of golf.   Wohoo! Neil’s got them so Sam and Andy are both hitting really well. Charlie mostly just runs up and down the hills. He tees off and then we pick up his ball and drop it on the green and then he loses interest about the 4th hole. Last night we went and played tennis before going to bed since the all day pool party at Monica’s didn’t get out all of their nervous energy.  Sam’s counts are holding. Still good platelets. I took Sam and Andy to a cooking class on Sunday that I bid on for their school auction and they had a blast but don’t think I wasn’t a little weary of the huge cleaver-like knives they gave the kids to cut up the vegetables. Someone at our table said jokingly about the kids and knives, “Well if they get cut, it’ll clot.”  I was thinking, “Well I hope so.” We were still at 151 on Friday. No cuts though and the boys had a great time being chefs for the day. Though when it came time to eat what they made (Mexican food) Andy picked the veggies out of the soup, and pretty much picked apart everything else.  Sam liked most of it though.
VMA last week was 30 (down ten from the previous week) and HVA was 40 (didn’t have it from previous week) LDH was 598 -normal but up about 40 points from the previous week. Best of all though, no pain at all. We had a nice regular fun last week of summer. The boys had a great time at Mack’s birthday party. They went out on the bay on a paddle board and couldn’t stop talking about how much fun it was. I will post the grand total that Mack raised with his birthday party as soon as I have it. I went over to him at the party and thanked him and told him what a great thing it was that he did and he said so sweetly, “And you know what else I did? I went to the orthodontist and told them about it the nurse was so impressed that I asked people to donate for my birthday that she said she would send a donation.”   Pretty special nine year old.Â
Charlie boy starts school next week. Two day a week preschool. He is still steadfastly refusing to be potty-trained though I know he is ready. Luckily, I think we go the only preschool in the country that lets kids start anyway. I’m hoping the peer pressure will get to him because I am out of tricks. I’ve tried everything. Anyway, tomorrow is his back to school picnic where he’ll meet the kids in his class. He was not all that thrilled to meet his teachers last week so it’s going to be interesting. Can’t believe he’s starting school too. Holy cow.
Happy first day of school to everyone.  First soccer games are this Saturday. I’ll post our sports updates on Monday and give you an update on how school is going later this week and how platelets are going.
Margot
Topics: Progress Reports | 8 Comments »
Much Better
By Margot | August 31, 2009
Sam has gotten incrementally better every day since we’ve gotten home. He stopped morphine the day after we got home and stopped limping a couple of days later. He needed a cart ride and to be carried  through the airport but now is not limping at all. Wohoo! His tongue and taste budswere still pretty screwed up so getting him to eat has been a challenge but that seems to be getting better too. He’s been swimming up with Uncle Tom and Abby last Thursday and Friday, Saturday was swimming and some park football with the Monacos (no noticeable limp) and then yesterday swimming with the Bonebrakes again.  We are so so thankful. MIBG must be working!!! We got a blood check this morning and his platelets are holding at 169, red blood 8.5, ANC 2278. We are scheduled to go back to CHOP for scans on the 6th and 7th of October and then we’ll start the second MIBG treatment on the 9th of October. The idea of a second treatment/going back to Philadelphia went over like a lead ballooon withSam. Hopefully though if we’ve knocked back the disease with this first one, pain won’t be an issue. As I said before I’ve stopped promising that “it won’t hurt a bit” for anything. Diane, Dr. Maris’s nurse said that we will probably need the stem cell rescue after the second treatment but since we are not on a trial so we can do it in San Diego.Â
Meanwhile, this week is two birthday parties. We would like to thank soon-to-be nine, Mack Bonebrake. On his birthday invitation, he asked that in leui of gifts for his birthday, that everyone donate to MagicWater.  Mack, you are an awesome guy and a great friend to Sam.
Also this week we are getting ready for school. The kids are really excited about school. Andy can’t wait to do recess with Sam. Even Charlie has caught the fever. He got new school shoes when we bought Sam and Andy’s and he refuses to take them off.  He wakes up first thing in the morning and says, “Mom, put on my new socks and shoes.’ Andy and Sam both picked out backpacks bigger then they are. When Neil suggested they might be too big, Sam said, “Dad, I can fit my skateboard in there and skate down the hill from school home.” The hill from school is straight down so it is not happening on a skateboard. Sam’s been arguing with me about it this morning trying to convince me “that’s it’s totally fine” on a skateboard. That’s a good sign right? I’m going to try to meet with Sam’s teacher on Friday to talk about his FM system and the school that he will miss.
Uncle Tommy and Abby and Grandma Joan left on Saturday. I don’t know how to thank them enough. They took Andy and Charlie to Legolandand big hotel with a pool the whole week we were gone. Talk about a good distraction.  Both boys had a ball and Charlie is still asking when we are going back to Legoland and when are we going to the hotel?   Thanks Uncle Tom and Grandma Joan!Â
I’m going to try and get it together this monththat we have off. As you can see from my last post, I was not in a good place last week. I think I’m holding together well but I seem to manifest stress by losing my mind. I lost my license in the airport, left the brand new DVD player at the airport along withhis PSP player and all of the games. Luckily a security guard picked it up and we got it at the lost and found. Also, the day before I left, I was out front with Charlie on his scooter and Colleen picked up Andy for tennis and he left his skateboard out front so I hopped on it (I don’t skateboard by the way) got going too fast and while trying to jump off tore something in my knee so I’ve been limping for the past two weeks. It was not my brightest moment. I’ll finally see an ortho guy this week to get that taken care of.  I’ll also have to go by the DMV for a new license.
Anyway, things are good here with Sam and Andy and Charlie and we are so very thankful.
Today the Mikulaks have been without their precious little boy for one year. We are thinking of them and Max today.Â
Margot
Topics: Progress Reports | 12 Comments »
Coming Home Today
By Margot | August 26, 2009
Sorry for the lack of update. Sam and I will be on a plane tonight at 6pm. No fevers yesterday. Pain under control. Ate a few bites yesterday and perked up a bit. He is so happy to be going home. He has been through hell and back, and since he is back I can write this cheery “wohoo we are going home” post. But Monday was hard. Hard. Hard. Sam threw up almost all day and all he had was gatorade (what he wanted to take his medicine with) and his meds so I won’t be surprised if he’s not a gatorade fan for the rest of his life. At one point when I was trying to give him his sodium perclorate (sp?) -protects this thyroide- and he was having none of it and we were getting behind in his medicine schedle to protect his thyroid. I tried to give him a ginger pill to help his stomach and he was having none of that. I took the the ginger pill bottle and threw it at the wall and yelled the f-word. Sam’s pain was terrible and we didn’t get it under control until late afternoon. Dr. Maris and I talked about adding a self administered morphine pump for him during the scan but it didn’t become necessary because right around the scan time, he turned the corner on pain. He couldn’t put any weight on his right leg at all and lifting him on to the scanner machine, I felt how much weight he’s lost. The scan was a horror show. A kind of heart racing, sweaty, I feel like I might pass out before this is over kind of scan. Dr. Maris says that they don’t use that scan for anything other than checking that’s the MIBG is being uptaken by the tumor. So, on the up side, Sam’s bones sucked up the MIBG like nobody’s business. Dr. Maris came in in the beginnning of the scan and looked at Sam’s right leg and said, “Well I’m not surprised that there he having pain in that right leg, look at it, there must be a lot of inflammation.” That gave me a little bit of solace that the pain must be the MIBG blowing up the tumor in Sam’s leg. Dr. Maris said the worst case scenario would be not to see any uptake with the pain Sam was having. Also, good news is that the arm that was giving him so much pain when he came in with Neil is not bothering him at all anymore and he’s using it with no problems. Uncle Matt was here with me the whole time,came to the scan, brought in everything Sam requested and food for me and Sam and even wine for dinner – me not Sam, and he helped me pack up everything last night. All I can say is Thank God for him, he was an awesome moral support and great for Sam to have here. Thank you Uncle Matt.
Yesterday was much better. The pain had subsided and Sam was unhooked almost all day and on oral morphine. He put weight on his leg and was much cheerier. Robert and Laurie (two of my long time authors and friends) came and hung out with us some last night and it was great to finally get to meet them after all these years on the phone and Internet. Nancy Goodman also came by and brought Blokus which was perfect. Sam loves the game and ours has lost all of its peices. Sam beat Uncle Matt who tried to fudge how many tiles he had left but Sam recounted for him. 😉 I put his hearing aids back in and we read four chapters of Island of the Blue Dolphins last night. He really liked it and kept asking me to read more of it. He’s watched a lot of age inappropriate movies while we were in here. Matt and I got him a lot of John Hughes movies. He thought Sixteen Candles was really funny but I’m hoping the whole, “I’ve never bagged a babe” part went right over his head. His taste buds are totally fried and though he ate some (by some I mean a few bites) yesterday he can’t taste much – a normal part of MIBG. It’s looks like we contaminated his PSP, we’d wrapped it but he didn’t like feel using it with the plastic and his gloves were not always on. We may need to leave that here with the radiation safety guys and come back for it. Matt was scanning everything last night as he was leaving and I held my breath as he scanned my laptop. He came in and gave me a grave look and then said, “just kidding.” Almost gave me a heart attack.
Sam is still sleeping but we should get out of here sometime this morning, go to CVS for his meds (morphine and zofran being the most important) and then maybe the Franklin Institue if he’s up for it. I don’t think he’ll be up for much walking though so we’ll play it by ear and take it very easy. We might not have that much time anyway. Can’t wait to see Andy and Charlie and Neil. We missed them so much. The greatest were Andy’s phone calls. He was so sweet and called and wanted to talk to his brother and me every day. He worked really hard to tell us what he was up to and it cheered Sam up. Charlie would only talk to us twice but I’m hoping he’ll forgive us when we get home. We are scheduled to come back here on October 6th and 7th (I think, or else it’s the 8th and 9th) and then start the second MIBG treatment on October 19th. Diane, Dr. Maris’s nurse said that we might not see ANC drop too much with this one, platelets will drop but it’s takes longer than with chemo – two to four weeks and then the second treatment we’ll probably see ANC drop and may need our stem cells. So, getting ahead of myself. Today we will go home and there is a little boy five feet from me who is very very happy about that fact. It will also make two little boys and their dad at home very happy.
Margot
Topics: Progress Reports | 18 Comments »
Good News/Bad News
By Margot | August 24, 2009
So the good news is that Sam’s radiation level is at 4.3 and if we didn’t have any other issues we would be out of here today after the scan. The bad news is that Sam’s leg pain seems to be worse, he spiked a fever last night and his stomach is really screwed up. He’s throwing up and complaining of stomach pain. Since he was already nauseous and we put him on antibiotics for the fever, he’s not keeping much down despite zofran, ativan and benedryl combination. It makes it hard to give him his meds because he keeps throwing them up. We did take the catheter out which wasn’t a very big deal to do. He hasn’t spiked a fever since the one last night so that’s good. His counts are good ANC 7000 , Platelets 162, Red 9.5 So counts are good. Now we just need to get his pain under control, get him to eat and poop and not spike another fever and all will be well. Yesterday I thought he was getting better but now we are back where we were. The good news is that his arm which is what was initially causing him pain is not hurting anymore and he’s using it.
Best case scenario would be that Sam’s pain starts to get better this afternoon, tomorrow we try to start weaning him back so can get to pain control by mouth. Less IV stuff may help the nausea and if he doesn’t spike a fever we can think about going home.
Sam when he’s awake and not in pain is getting pretty bored. We started a puzzle together this morning 500 pieces so maybe that will help keep us occupied. I’ll keep you posted on how things look later today or tomorrow.
In stark contrast, Andy and Charlie are at Legoland and just called me saying they are having a ball. Charlie got on the phone and said, “I’m going again Mom!” He actually called and talked to me yesterday afternoon so that was good.
Margot
Topics: Progress Reports | 10 Comments »
Turning the Corner?
By Margot | August 23, 2009
I think we are turning the corner today. Yesterday was pretty tough. Sam was in a lot of pain in his right leg so we spent the day trying to catch the morphine up to his pain. It sucked. A lot.  I think we finally succeeded in the late afternoon and Sam was up all night until 3am watching movies and playing video games. He can’t have his hearing aids in so it’s tough for me to read to him because he misses a lot of it. He missed his last dose of morphine in the pill version because he was throwing up and couldn’t take it but when he finally decided to go to sleep, he slept all night and then woke up this morning at 8am (he’s killing me) with a big smile and said, “Hey Mom, I don’t remember that well but I was dreaming about me and Mack and Joe and Anthony and Andrew all going to a movie after tennis.”  I was glad he was having a good dream and not a painful one. He hasn’t been in much pain this morning. He say his leg hurt right before his morning dose of morphine but it’s not at all like yesterday’s pain. So either he was progressing before the MIBG kicked in and it’s starting to work or it was tumor kill and the MIBG started working yesterday. Any time there is activity in the bone there is pain. So we don’t really know which it was yesterday. I’m going to go with tumor kill because that’s what I want to go with ;-). His radiation number is down to 8.3 today. Yesterday it was at 14 and the first day it was at 39. All about right for his size. So I’m sure tomorrow we’ll be at 7 and can be released from a radiation standpoint. Whether or not we’ll have his pain totally under control by that point I don’t know. I’m guessing he’s not ready to be off morphine totally yet but maybe it will be fast. I don’t want him to have another plane ride like he had on the way here so we’ll just play it by ear.
He’s doing ok with the boredom factor playing video games.  The girl next door to us (left yesterday) was sixteen and her mother said she was so bored because she doesn’t like Playstation. So I guess I’m very thankful that Sam is such a video game nut. All of meds are making and probably the MIBG is making his stomach hurt so he hasn’t eaten much. I tried several things last night and he said he couldn’t taste anything until I tried oatmeal. I think his sweet taste buds are still working but nothing else. Anyway, he threw up after two bites of oatmeal so it didn’t matter much anyway. I asked him this morning and he said, “I was hungry until you asked me and then you made my tummy hurt. You need to wait until I tell you, Mom.”  Anyway he’s in a much better mood.  Uncle Matt is coming in this morning with some Ginger pills and some more coffee for me. 😉 He’s been great and his friend Susan came up last night and we had dinner by the window in the hall while Sam slept. Sam is all screwed up timewise. He’s been sleeping in the late afternoon and then waking up and staying up until two in the morning. Yesterday he slept until noon but today woke up at 8 so maybe we’ll be on a more normal schedule today.
Meanwhile back at the ranch… Charlie and Cousin Abby and Andy are having a good time together. Abby and Andy seem to getting along much better this go around than the last. Charlie refuses to talk to me on the phone. Sort of breaks my heart. I know he’s mad at me for leaving him but hopefully he’ll come around after I get back.  Neil said he’s having a great time with his cousins. Neil got home yesterday at around 10am after an early flight out of here.  Uncle Tommy got Sam and Andy a new skateboard and when I told Sam about it this morning he got a big smile on his face.  He still has the one we got him a long time ago and has been lobbying to get a new one.  The deck that Tony Hawk signed for him is in his room but we don’t use that one It’s a shrine ;-).   Andy had a birthday party yesterday with all of his classmates and it seemed like he had a good time. He talks to me on the phone and is very sweet and then abruptly says, “I gotta go” when he see something else going on he feels he needs to be involved with.  Â
I’ll update again tomorrow. I’m sure we’ll be releaseable on the radiation front so I’ll give you all a pain update.
Margot
Topics: Progress Reports | 7 Comments »