teamsam.com Blog

Happy Birthday Sam!

By Margot | July 14, 2009

It’s Sam’s birthday today. He is officially nine.  We are so proud of our Sam.  He had a great laser tag party on Saturday night with all his buddies and played in his basketball game on Saturday morning.  There is no quit in our boy.  He dribbled well and passed well and was fouled while he was trying to shoot.  He missed both free throws not having the strength to get them up to the basket and he was pretty bummed about that.  As he was going to sleep on Saturday night he said, “Mom I missed both free throws.”  I told him I used to miss free throws all the time.  Both Neil and I couldn’t believe how well he did all things considered.    Saturday afternoon we got his bike.   We are in New York today.  Sam wanted his birthday in New York City.   The kids did great on the plane.  Charlie slept for half of the way and Sam and Andy  entertained themselves playing Madlibs.  As you can imagine there was a lot of little boy humor going on as every word they filled in had some sort of bathroom humor.  They almost cried laughing everytime they put “weiner” in for body part and then we read it later.  Lord knows what the people behind us were thinking. Between that and Charlie saying “What the?”  all the time I’m bringing up some real gentlemen.  We flew into Philadelphia – Pensylvania is where Dracula lives according to Andrew- yesterday and drove up to Jersey City to Uncle Matt’s place.    The boys are having a great time with Rosco the dog and generally wreaking havoc on Uncle Matt’s  very nice apartment.

Update continued 10;20pmNY time:  Sam had a great day today.  All the boys did. We went to Ellis Island and The Statue of Liberty where Sam and Andrew had the audio tour for kids and loved it – they were really interested.  Sort of surprised both Neil and me. We took a picture of both boys in front of the statue and a sleeping Charlie on my shoulder.   Will post pics when we get home as I don’t have the converter here.  We also took a family pic in front of the sign at Ellis Island because I figured if you put some old time Dungarees on the boys, we could have just gotten off the boat from Cork County ;-).    We came home and went swimming at Uncle Matt’s and then drove to New York to meet John and Catherine and Oliver at their house.  The boys had a blast with Oliver – we went to Central Park and played a little and then out to pizza and noodles and then back for a cake that Catherine and John bought for Sam. They also gave him a new camera that he is so excited about.  He kept saying all the way home, “Get it ready for tomorrow!”  and then when we got back he said, “where’s my camera, can you help me set it up now?”  Thank you thank you John and Catherine, you made him so happy.  The boys just went for a late night walk with Uncle Matt and Rosco and I guess then they are going to fall into bed.   Sam said he had a great birthday.  We are so happy that we brought everyone for this trip, though there is the usual amount of fighting -lots, they are having a great time together and it’s a vacation for Sam too.

Tomorrow will start the medical part of the trip which I have sort of been ignoring to myself.  We meet with Dr. Chang in New York who used to be an oncologist at Sloan Kettering and now does Chinese medicine and some other treatments.  He was referred to us by Scott Kenedy whose opinion we value highly.  We have no idea what he’ll have to offer but certainly want to turn over as many rocks as possible.  We meet with Dr. Maris on Wednesday.  We don’t have an official read from San Diego yet on the scan because the radiology team compared it with the March scan instead of the MSKCC scan which we gave them so the read doesn’t tell us anything we don’t already know.  Dr. Modak called today though and said he’d look at it by the end of the day – we’d Fed exed it to him.  So, since he read the latest one before this one, he’ll be the guy to tell us what’s what.  He is and has been so nice to us.

We did get all of eight and we are so so thankful for that.  Sam has grown so much this year and learned so much in school.  Just watching him in the pool helping Charlie swim just takes my breath away at how much he’s grown.  I’m happy though that he will still crawl on my lap for a hug every now and then.  Nine will be long division and essay papers, it will be growing out of some little boy stuff probably, it will be more travels –  which he loves - and lots of laughter.  It will be lots of tennis which he has become so crazy about.  It will be Charlie starting preschool and Andy in first grade on the big kid playground with him.  It will be lots more cancer treatment but we will do our best to make it fun and do it together.  God, please give us all of nine and then we will come back and ask for ten…….

Margot

Topics: Progress Reports | 25 Comments »

Less Impressive But Still Impressive

By Margot | July 10, 2009

By our untrained eyes the scan looked better.   We didn’t have the NY scan to compare it to up on the screen but it looked like we cleared some of the left leg and the left arm and possibly a few other spots.  That said, the spine still lit up, the entire right leg including the pelvis, we think the rib cage and the right arm.  So we are still left with quite a bit of disease though less than we’d had we think.  Sam’s VMA/HVA dropped by half this week.  HVA was 13 and VMA was 26 -down from 57 VMA last week and 27 HVA so that’s a good sign.    Though it was a response today and could have been much worse it was still sickening to see the spine light up to the very top so close to Sam’s brain.  I just kept thinking to myself, “stay, stay where you are so we can get you” as if the cancer cells were a dog I could get to sit.  Obviously we do not want the disease to make the jump to soft tissue before we can knock it out.  I’ll fill you in on the formal read of the scan as soon as we get it.  Sam’s LDH yesterday was 510, Platelets were 68 -checking again tomorrow before we leave on our trip- red blood 10.2 and ANC was around 5,000.

Good news on how Sam is feeling. We went in for a clinic appointment yesterday and Doctor Willert took one look at Sam’s rash and after checking that we hadn’t cultured anything since the first, took him off the antibiotics.  As soon as we stopped giving him the meds, he stopped being tired and perked right back to his old self.  I took the boys to SeaWorld last night before Neil got home from Omaha because I had been promising Charlie.  They have reached a new milestone.  Andy is tall enough so that he can go on Journey to Atlantis, the big roller coaster, with Sam by himself and doesn’t need Neil or I to ride with him.   So Charlie and I walked them all the way through the line to where they got on, crossed over and waited for them to get off but it was strange watching them ride off by themselves for the first time.   They were very excited.  Andrew came off and said “that was wicked awesome.”  “Wicked is Andy’s new word. He said wasn’t scared at all of the big drop where he used to be so scared.  The picture up on the screen on the way out showed a different story because he had the most terrified expression on his face that Sam and I  couldn’t stop laughing.  Sam hid his face against Andrew in the picture.   Andrew still insists he wasn’t scared at all.   Charlie who is way to young to go on is about 1/10 of an inch too short to go on.  He measured himself and I could tell the lady would have let him go.  He said, “Please please mommy, let me go on the roaster coaller.”   There was no way, he would have been terrified.   But scary that our not even three year old is already 42 inches tall and qualifies.

Today for the scan Kelly and Meredith took Andy and Charlie to the beach with Jett and Luke and Kennan and Ashlyn and Catherine.  They had a great time but I did not plan it well as Kelly came and picked them up and it almost killed Sam to see them go in their suits with their boogie boards.  We had a little time before the scan and Sam wants a new bike for his birthday so we jumped in the car and went to a bike shop.  His heart wasn’t really in it though, he was still a little sad that he was missing out.  We had the scan.  I’d rented Titantic because we read The Titanic Treehouse book in the hospital and he has wanted to see the movie since.  Happily, the scan was over before the steamy parts but Sam likes the movie so far.  This afternoon Coach Joe said he would give Sam and Andy a tennis lesson.  Andy was still at the beach when it started and so Sam had the lesson to himself for the first half an hour.   Watching him out there as Coach Joe joked with him and he hit the ball, he had the biggest and most smiles I’ve seen from him in a couple of weeks.   Right then and there I decided he should play in the basketball game this Saturday -which he’s been lobbying for – because being out there is what makes him happy.    When Andy got there things disolved into complete silliness because Andy was in a goofy mood and the two of them were laughing until they couldn’t catch their breath.

We had pizza tonight with Mack and Grant and Lisa. Charlie after all day at the beach fell asleep on my lap at the tennis lesson 5:30 and hasn’t woken up since.   The boys had a great time and played tag in the back yard and laughed through dinner.  Sam had plenty of energy.

Thank you Kelly and Ric and Meredith and Ron for giving Charlie and Andy such a great day.  Andy’s quote from the day, “I saw Mack and Tate at the beach. They said they saw some leopard sharks swimming around by their feet and they showed me one.  They were way out there though, out by the boobies.”    Took me a minute to realize he meant bouys.  For a minute I thought he’d been hanging around his father too much 😉

Sam’s birthday party is on Saturday.  We will be on the East Coast for his actual birthday and it will be a doctor free day so we will make it fun. I’m sorry to write so much about the minutia of our daily lives but it’s therputic and I feel compelled to get it written down.  We are hopeful and determined and still terrified out of our minds.

Please say some prayers for the Morgan family today:  http://www.superryan.blogspot.com/

Margot

Topics: Progress Reports | 12 Comments »

Slowly

By Margot | July 7, 2009

We are home on IV antibiotics that areadministered every eight hours.  Sam is eating here and there a little here, a lot there.  He ate four pieces of challah bread at Lisa’s today.  He is tired and unlike other times when we’ve gotten out of the hospital and I’ve had to caution him to take it easy, he’s sleeping in quite a bit and wants to lay on the couch a lot.  If you don’t think that scares me out of my mind, you’re dead wrong.    He did just spend ten days laying very sick in the hospital but I’m so used to him bouncing back with a vengeance when his counts come up that’s it’s disconcerting.   He does have energy in spurts though so it’s not all laying around.  He and Andy just went and played at the Bonebrakes today and he had a great time.  We went and saw Ice Age with Mimi last night and he sat on my lap for most of it but he loved it.  I recommend it -it’s much better than the second one.   Having seen just about every animated movie known to man I feel qualified to say which ones are worth it.  This one had some great action scenes and the new weasel  guy in it was funny – a crazy Australian – like most of them ;-).

Home health came on Monday morning and took Sam’s labs and VMA/HVA at home because awesome nurse Sheila set it up for us so Sam could have some days off from the hospital.  Thank you Shelia, as Sam and Andy would say, You Rock!  Blood looks good. ANC is 4851 -that’s GCSF.  Platelets were 87 and red blood 10.2   Tomorrow is the injection for the scan and a blood check and doctor’s check with doctor Willert.  Sam still has huge red target looking splotches all over his upper legs and some on his lower legs.  Not sure if it’s a different reaction to the new antibiotic or the old reaction working it’s way through.

Thursday at noon is the scan.  We want to see unimpressive.  Elizabeth is on vacation on Thursday and Friday and Kelly and Meredith are going to entertain Andy and Charlie -   They called me today and said, “we’ve got you covered whenever and however long you need us on Thursday.”  Thank you Thomases and Brunettes.  Andy has basketball practice tonight and then depending on how things are going we might go down to the beach for a picnic.  Andy’s basketball practice reminded Sam of his team.  He’s only been to one practice and wanted to know when his next game is.  It’s on Saturday and I’m not sure he’s going to make it.  I told him, I think he needs to take it a little easy and will not go to the game and his response was, “What!?  That means I’ll have missed two games.”  

Neil had to go to Omaha for business for a couple of days but will be back for Sam’s scan on Thursday.   We did not see much of the scan as it was happening in NY.  They only let one parent in at a time and don’t put the scan up on the screen.  When I ask the tech to show it to us she basically flashed in the screen for a few minutes and then took it down.  In San Diego we will be able to see it all unfold.  We love our techs here.   Neil made me laugh today when he called because after we’d talked about how Sam was doing and what Andy and Charlie were up to and went over all of Sam’s meds. he said as he was signing off, “Hey did you hear Michael Jackson died?”  He was being sarcastic of course.

I’ll post after the scan.

Margot

Topics: Progress Reports | 7 Comments »

Happy 4th! Sam is Getting Out Today

By Margot | July 4, 2009

Qucik update.  Sam’s rash got worse Thursday but better yesterday.  They biopsied and have pretty much concluded it was a drug reaction.  Sam’s line cultured one other day so we may have had a line infection too.  He hasn’t cultured in the last several days though so I’m not sure he’s going home on IV antibiotics or not – that decision is still pending.  He has been fever free for 48 hours and ANC is over 2000!  We got tanked up on blood and platelets yesterday.  Thank you donors!  He has needed platelets every few days.   The difference in Sam was obvious yesterday.  He was back up playing games and laughing.  Mimi came to visit him and nurse Sheila said, “Mimi is medicine herself.”  ANC  yesterday was only 396 so he roared back today.   He’s still got acid reflux but it’s better and he ate more yesterday. He’s still sore walking from the rash on the bottom of his feet but getting better.  Hope everyone has a great 4th.  Will update more soon.

Margot

Topics: Progress Reports | 16 Comments »

Spoke Too Soon

By Margot | July 2, 2009

Sam woke up with a painful red rash all over his body yesterday.  We thought it might be a drug reaction to Vanco but most of the doctors that looked at it – we had in infectious diseases, dermatology and the oncologist on the floor look at it- didn’t think it looked like a drug reaction.  It looked like the reaction he had to cephapine to me but what do I know.  We convinced them to take him off the Vanco and put him on something else anyway.  Dermatology wants to biopsy it today to make sure it is not fungal and dangerous.    The oncologist yesterday said even though the line didn’t culture yesterday since Sam is still having fevers, she’s not convinced it’s not a blood/line infection and wanted to keep him on the Vanco- (we switched him off of it).  That is very different from what the oncologist had told me the day before.    The oncologist from two days ago was pretty convinced it wasn’t line related since we’d had negative cultures all week if yesterdays were to come back negative which it did.  Sam finally got up to do his own time in the playroom with Angela after I’ve been nagging him about it all week but he couldn’t hold the air hockey thing because his hand hurt from the rash and he just looked so strained that I felt terrible.  When I went back in he was smiling playing Clue Jr. with Angela but it was a pretty quick playroom time.  Neil stayed last night. I left with Andy and Charlie around 9:15 and he already seemed to be feeling a little better, we played sports hangman that Madison’s mom brought – Thanks Angela!-  and the boys loved it.  Maybe I was just hoping he was feeling better.  I’m hoping to go in early this morning and find the rash fading so he doesn’t have to do the biopsy and he can maybe go home some time this weekend.  I’m hoping his ANC is up and he can start fighting whatever this is.  They wanted to biopsy yesterday with a local but Sam wasn’t having any of that so he’ll need to be NPO today (which is a laugh because he hasn’t eaten anything much anyway).   He is still running fevers 102 yesterday and he is pretty miserable. He managed a few jokes though and when Neil called and I told him Sam was pretty miserable thinking he couldn’t hear me and  he yelled out, “I’m not miserable right now!”  His new hearing aids sure do work well.  I keep thinking with all of this where the heck would we have been if he had gotten the whole dose of chemo?  He got a lot of chemo.

Anyway, I’ll try not to leave everyone hanging and post later today.

Andy has been hanging with the Brunettes the past couple of days and Monday he hung out with Beau all day.  He and Luke have done a tennis clinic together and then Meredith took them to the beach yesterday.   Today he has Luke’s birthday party.  Thanks Meredith, Lisa, Pam and Monica for giving him some fun.  Jett is finally better so Charlie is having a playdate with him today.  He is so excited.  I bought Thank you notes in the hospital gift shop yesterday and then started laughing to myself because I don’t even know where to start with all of the people we owe Thank You’s to.

Please think good thoughts for our little boy today.  I want the smile back on his face and he wants OUT.

Breaking News:  Neil just called – no fevers all night and ANC 330  Wahoo!  Sam’s still sound asleep so no news on the rash but I’m thinking it’s going to look better now that we are off the Vanco.  Here’s to gut feelings.  Hope we’re right.

Margot

Topics: Progress Reports | 10 Comments »

Line Didn’t Culture From Yesterday

By Margot | July 1, 2009

So they are thinking it was probably an outside contaminant and not a line infection because the culture they did yesterday morning at 4am before starting the Vanco didn’t culture which means the blood was contaminated after they took it out of Sam.  Hurray.  Anyway, we hope so.  If this mornings culture comes back negative tomorrow they will take Sam off the Vanco and assume it was an outside contaminant.  ANC today is 32.  We are slowly creeping up.  Platelets are 96.  Red Blood 8.2 and LDH…Ta da: 351  which is actually low.  So good news all around today.  Sam is still sleeping because we read Blubber until late last night.  He still has horrible acid reflux.  We switched to prevacid last night from protonix but it didn’t seem to help much.  He’s eating but only bites at a time.  He pitifully picked tiny pieces from the top bun of a grilled chicken sandwich and little bit of baked potato that Neil had to go on a wild goose chase for before taking Charlie and Andy home.  I don’t even want to think about how much weight he’s lost in here.   We need to get him out of bed today.  It’s very unlike him and I know he feels crappy,. but he’s just wanted to lay around.  Yesterday I got him up for some tennis in the hall - Nadal is best on clay, Federer  on grass, Sam was pretty good on Rady Childrens Hospital Tile.  We almost nailed the lady setting up the afternoon parents tea several times but she was pretty good about it. It was quite the image, both of us with masks on, Sam attached by several lines to his pole, playing tennis in the hall.  Sam is still spiking fevers – got to 102 last night.  Hoping once that ANC comes up that nonsense will stop.   So mostly good news today.  Sam is still sleeping so I can’t give you a mood report but as long as he’s not eating and in pain, he’s doing pretty well.  Maureen came by last night which made all of the kids happy.  Thank you Maureen!

Sorry about the false alarm report – at least we’re thinking it’s a false alarm – he’ll stay on Vanco today until we get another culture back. It was pretty grim around here yesterday morning contemplating the line infection but things are looking brighter today.

Margot

Topics: Progress Reports | 8 Comments »

Line Infection

By Margot | June 30, 2009

Sam has a line infection.  They cultured something.   That would explain the fevers.  He is now on Vanco which he has to be premedicated for because he gets redman’s syndrome so he is sleeping at the moment.  Neil said he woke up happy and in a good mood before I got here then tried to eat something and had horrible acid reflux again.  We got some great suggestions for drugs and foods to try, he’s on IV protonix but it doesn’t seem to help at all.  Last night I got him to eat some apple cut up into small pieces and some broth and that didn’t hurt too much.  Yesterday he was on morphine for the pain which seems crazy but he is in a ton of pain after he eats anything. 

So the Vanco course will probably be a week -maybe two twice a day.  It runs over an hour and a half.  We’re trying to see if we can’t get home health care to come and do it at home if we ever get our ANC to go up and get out of here.  It is 8 today.  Yesterday it was point one and the day before it was less than point one.  

When Sam is not eating he’s in pretty good spirits but doesn’t want to get up much so we are making him get out of bed. Angela (the awesome child life specialist) is trying to get his own playroom time again today.  Yesterday he had it but didn’t want to go because he was in too much pain from having tried to eat something.   We read the abridged version of Moby Dick yesterday and he really liked it. He wanted me to read the whole thing so we did.   The whole family watched Transformers last night in Sam’s hospital room, I didn’t get Andy and Charlie out of here until 9:30.  Neil took Andy and Charlie out to play for a while last night while I sat with Sam and the hospital was having karioke night in the playroom.  Andy sang Eye of the Tiger for the whole crowd and Neil said he was a big hit.  He hit the wall about the time I was getting them out of here and on the car ride on the way home he said, “It’s not fair.  Other families don’t have kids with bad guy cells.  Why do we have to have bad guy cells?  Why does Sam have to be in the hospital?”  I’m telling you my armchair psychology skills are getting a workout this week.  I talked to him for a long time but am not sure if I was helpful or not.  I actually got on the Internet when we got home and showed him a picture of a cloud with a silver lining and tried to explain what it means.  Pretty cliche.  This morning we drew some pictures which seemed to  help.  Maybe I’ll try that with Sam today.

Andy is at tennis today with Coach Joe and then will play with Luke until basketball practice tonight -thanks Meredith.   Charlie is home with Elizabeth and is waiting for Jett to get better.  He says randomly “I wonder when Jett will be better, I think maybe Wendesday”  sometimes he says, “I think maybe Friday.” 

I booked Sam’s birthday party yesterday for the 10th of July at the Laser Tag place.  He’s very excited – that perked him up a bit last night. .  We are going to Philadelphia on the 15th for a consult.   If we get out of the hospital with Vanco, Sam will have to stay accessed which will suck but at least he’ll be out.   I’m counting my chickens though because with an ANC of eight the egg hasn’t even been laid yet, much less hatched.  That’s about all the sucky news I have to report.  It will be even suckier though if the Vanco doesn’t work and we have to take his line out so even though I’m whining about Vanco – I hope it works.   One day at a time.    Thankful Sam is feeling good when he’s not eating.  He loves his nurse Kaitlyn who is bringing him a pictures of the Atlanta Falcons quarter back Matt Ryan who she knows from college.   She’s been great with him. He talks football with her and yesterday was telling her that his favortie player on the Giants team is the tall running back (I can’t remember his name).

Hold on the LDH in the 400s because at least that means this chemo, with all it’s bad and far reaching side effects, might be working.   MIBG scan is scheduled here for the 8th.

Margot

Topics: Progress Reports | 9 Comments »

Generally Miserable

By Margot | June 28, 2009

We are on day three of high fevers with no counts.  The doctors want to do a CT scan to make sure we aren’t missing anything and add an anti-fungal.  ANC was zero today and platelets were 63 -right after yesterday’s infusion so he’s not making many platelets.    His stomach hurts and last night right at shift change he started getting painful acid reflux which has not gone away.  We’ve done IV zantac but are moving up to something stronger soon.   The look of misery on Sam’s face is pitiful and added to that he’s losing his hair which he just noticed all over his pillow. On top of all that they just came in to let us know they are going to put in an IV for the CT and he just threw up a bunch of green bile.  I don’t know how many more indignities and prodding he can take.  As you can imagine he is miserable mad guy right now.  Understandably so, I I’d be breathing fire myself.  

On a good note Mac and Lisa stopped by with bagels and coffee this morning and he perked up quite a bit though didn’t eat anything – his first smile of the morning was when we were playing the Mad Libs that Mallory dropped by yesterday.  Thank you thank you Mallory and thank you for running to the store for TUMs.  We also started on Matilda last night that you brought.   Anyway, after Lisa and Mac left Sam started feeling pretty miserable.    

He and I had a nice quiet night last night after everyone left.  I love reading to Sam here.  We’ve been through so many books while we’ve been   here and I love his little laugh at Uncle Feather in Fudge calling people a Turkey Brain.  While we were reading last night he said, “this book is making me hungry.”  So I ran to the fridge and warmed up some salmon which he ate -the only other thing he ate besides two small blueberry muffins yesterday.  Unfortunately an hour after he ate he started getting acid reflux and it bothered him all night.  At one point in the middle of the night during one of his high fevers when I had to leave him with only a sheet he sleepily said, “it’s not fair that Andrew gets to sleep in a nice warm bed while I’m stuck in here with only a sheet.”    I told him when Andrew was sick with his high fever he had to only wear a sheet too.  “Oh.”  Sam said.  That seemed to make him feel better but maybe I should have said “I know it’s not fair.  None of this is fair.”   If cancer were a bullet we parents would dive in front of it but we can’t so instead we have to hone our psychology skills.  I’m afraid mine not be up to par.  Sam is watching the Brazil/US soccer final right now and looking a little better.  It has caught his interest at least.  Neil went to shave his head and took Andy and Charlie with him for haircuts.

It’s looking like the meds – zofran and zantac might be kicking in a bit as his miserable face is easing a bit and he’s glued to soccer.

More soon with hopefully a better, more cheery update.  Thanks for all the book suggestions there were many books suggested we haven’t red yet.  Last note LDH was 456 today lowest in months.

Margot

Topics: Progress Reports | 11 Comments »

Back In

By Margot | June 27, 2009

Sam’s fever spiked on Thursday night and his ANC was zero so we were admitted.   He’s not eating much of anything but otherwise feeling ok.  Mimi came and visited yesterday and Mac may come this morning if and when Sam wakes up and Joe will come this afternoon.   He’s getting a red blood cell transfusion right now and Neil said his fever got to 104 last night.  Ugh.  His ANC today is 25 so maybe he’s on the way up.  His platelets are 30 and they are transfusing platelets right after the red blood this morning so he’ll probably stay sleeping for most of the morning .  Temp is 36.5 C so temp down. I’ll bring the boys in later this morning.  Yesterday we read the last of the Judy Blume Fudge books and are looking for more funny books.     Suggestions are welcomed -he’s finished all the Wimpy Kids.  We had a big family game of clue and bingo last night and Mimi and Billy played a lot of clue and bingo yesterday with Sam. He’s a Clue addict now.  When Neil came yesterday he brought the volleyball and tennis balls and rackets and the boys played four square in the hospital halls.   Neil said both Sam and Andy stole the ball from Charlie with no mercy causing Charlie to scream.  I know that hosptial just loves us.  We have nurse Sheila today.  Hurray hurray. When I took Andy and Charlie home nast night around nine Sam and Neil were just starting to watch Shrek.   Sam was dancing in his bed to All Star as we left.   

Andy had his first basketball game yesterday afternoon at 4:30.  The team did really well but the first thing Andy will tell you is that they lost.  He had fun though and aside from Lance having to tell him to pass (he was being a bit of a ball hog) he did great -made two shots and played good defense and even had an assist after he was admonished to pass.   I think it’s hard on Sam watching Andy go about with life outside the hospital – especially now that Andy is older and doing many of the same things Sam would be doing and I’m trying to be sensitive to it.  Sam’s first game would have been this morning but he was sweet when I told him maybe next week if he’s feeling better.   He perked up and said “Ok.”  But I can see it’s hard on him.

Andy has given me until he counts to 60 to play the hide and seek/tag/monster game he made up.  It’s an interesting game because Charlie gives everyone away.   As soon as he’s found he says, “Go get Mom, she’s in the closet!” 

We’re lining up scans for next week.  LDH was down in the 600s this week.  Hopefully a good sign.

Margot

Topics: Progress Reports | 9 Comments »

Out but in clinic for blood today

By Margot | June 25, 2009

We got out of the hospital yesterday afternoon.  Joe came and horsed around with Sam all day until we got out and they had a great time playing video games, seeing the miniature horses that were there and going to the play room. Thank you Joe and Colleen.  We had a nice afternoon, dinner together and a walk around the block.  As I was walking with Sam he said, “Mom, I really didn’t want to do chemo and hospital stuff over my summer.”     We hear ya buddy.    This morning he had an appointment for new hearing aids.  He was pretty lathargic the whole appointment -admittedly it was very early but then just wanted to come home and go back to bed.  He’s pale and I’m thinking needs a refill of red blood so we are on our way into the hospital for that today.   Temp has been hovering around 98/99  so as long as it doesn’t go higher we’ll stay out of the hospital.   His new hearing aids have transposing technology that transposes the higher frequency sounds that he can’t hear into the lower frequencies. As sleepy as he was  I could tell it made a huge difference.   She tested him on all the words he missed when asked to repeat them on the last test and he got them all – even the “th” “s” and “sh” sound words he never got before.    And she whispered to him and he heard her!  Crazy stuff.   Now we just need to cure cancer and all our problems will be solved.

Andy is at science camp again today.  He said it’s the wrong kind of science camp.  He was hoping for the kind with exploding potions and making stuff where “you pour one thing into another and then you drink it and become super fast and super strong.”  Why I couldn’t find him that kind of science camp I don’t know.   Charlie man is doing well – funny happy little guy.  Andy was telling me something last night and Charlie repeated every single word he said. 

Margot

Topics: Progress Reports | 2 Comments »

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