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By Margot | February 20, 2010

Sam came home yesterday afternoon and as usual all of our moods brightened quite a bit.  He is on a pain pump and fluids.  It was kind of funny because he wanted to make what is becoming our traditional Toys R Us stop on the way home from the hospital and I was trying to figure out how I would do that with the fluid bag that was hanging from the dry-cleaning hook in the car and the pain pump but I figured what the heck and we stopped.  I lined the ToysRUs Cart with Sam’s blanket, hung the fluids from the seatbelt on the cart they have for toddlers, and popped him in with the pain pump next to him and we were good to go.   We got a the only 720 bakugan and zoomed up to the check out.  The check out lady did a double take but that was about it.

About two hours after we got home Sam spiked a 102.7 fever and the thought of bringing him back to clinic for a culture was not a happy one for any of us.  Happily the home health nurse was coming right at 5 to set up the backpack for the fluids so Sam can be more mobile.  Home health does not have culture bottles though so Neil dropped Andy off at his basketball game while I called the oncologist on call and asked if we could come in and grab a culture bottle, have the home nurse draw the culture and then have us drop it back at the hospital.  She said that would be fine so Neil zoomed from the rec center to the hospital while the very nice nurse waited with me, we drew the culture when Neil got back and gave Sam some tylenol and then Neil raced back to the in-patient ward to drop off the culture.  Sam’s temp stayed down all night and he had a pretty good night.  He hit his pain button a couple of times.   He has some pain right up under his ribs and he usually hits the button if he needs to get up on his legs.  For the most part though, pain is under control.

Uncle Paul is coming on Wednesday from Australia with cousin Marty.  We are all very excited.  The kids can’t wait to see them and it will be great for all the boys to hang out with little Marty and their Uncle Paul.  Andy is extra excited because for sports day I got out Uncle Paul’s old basketball cards and some newspaper articles about him from some of his games in Australia and now Andy can’t wait to play basketball with him and he keeps telling everyone, “My Uncle Paul is famous.”    It’s funny.    Sam and Charlie are playing Madden 07 right now and it’s great to listen to them talk to each other about the game.  Sam seems to be seeing the game ok.  Charlie knows more about football than any three year old should actually know.  He loves to reinact the plays in his own instant replay.   Andy spent the night with Luke last night and Meredith said they had a good time.  She had both Charlie and Andy for dinner last night while we raced around for the blood culture.

Thanks to everyone for the gift cards.  They are hugely helpful.  Not a lot of cooking going on around here lately.   Hope to get some notes out soon.

Margot

Topics: Progress Reports | 15 Comments »

Yesterday Sucked but today is better

By Margot | February 18, 2010

We are working on getting Sam discharged.  He spent a couple of days in the ICU because his sodium levels were dropping and the only place to get highly salienated fluids is in the ICU.  It made us really appreciate the Hem/Onc ward though we did have one rock star nurse who was great. Not our Sheila The Great  but pretty great.  Mostly it was a lot of no sleep.  Sam’s leg and back pain have gotten much worse in the past few days and we are back on a pain pump.  He hit the button several times yesterday because of various tests going on but hasn’t hit it but once todaytoday during radiation.  We upped the dose of the oxycontin to 25 something or others morning and night.  His eye has been bothering him with the light and then in the ICU he started to complain that he couldn’t see the TV to watch the Olympics.   I gave him a menu to read and he couldn’t read it.  Neil and I asked for an opthomolgy consult yesterday when we got back to the hem/onc ward once Sam’s sodium had stabilized.   They requested that we come to them which we did but it was a major effort to get Sam from the bed to the wheel chair and get him comfortable.  Anyway, to make a long story short, the opthomology appointment brought me to my knees.  Sam sat on my lap and tried with his left eye covered to read any of the superlarge letters on the wall.  Not one.   She gave him a card to read right up in front of his eyes, couldn’t read any of  them.  The only thing he could do with his right eye was tell her how many fingers she was holding up right in front of his eyes.  I was shaky and sick and angry that this nasty disease is taking his eyesight too.   His left eye is fine for which I should be thankful but I felt like someone was tearing my insides out watching him struggle to read those letters.   The endocrynologist asked that we do a brain MRI to see if it could give us any clues as to why his body is wasting salt so we did that last evening.   The results are pretty much the same, he has disease in his skull and in the dura lining of the brain but no masses inside the brain which is good.  The salt wasting is probably related to the liver and the radiation.    Anyway, his sodium levels are rising so that’s a good sign.  Though moving Sam from the bed to the wheelchair to the MRI exam table was exruciating, he fell asleep on the table, we had timed the benadryll right and yet another tech told me what a great kid he was.   So while I am ranting and cursing this damn disease I might as well throw in the fact that I don’t want him to be a champ at all this crap.  In the ICU during shift change when the day nurse was filling in the night nurse on Sam’s case I overheard her say, “this kid is awesome, he takes two, three pills at a time no problem.”  Then we went to radiation and the techs there told us again what a pleasure he is to have and how well he does and the ambulance drivers said he was great.   And then we did the opthamology appointment and the MRI and an ultrasound to check the fluid in his belly and as he struggled to get from chair to table and everyone told me what a great kid Sam is, I wanted to hit something.  I know, it’s not like I want someone to say, “Wow, your child is a monster!”  It’s just that I want him to be out on that soccer field and on the field trips and in his classroom – all of the places he wants to be.

So the next best thing is to get him home where he also wants to be.  Dr. Willert thinks maybe tonight or at the latest tomorrow if we can set up all of the home meds.   On a good note, his liver is definitely shrinking so he’s responding to radiation.  Here’s hoping his skull will respond as well.  He actually wants to do radiation because he says it works.  The mask on his face doesn’t even phase him now.

He and I are on the third Percy Jackson book now and he really likes the series.  All of my Greek mythology is coming back to me since the books are based on the Greek myths.  We’ve been playing blokus and scrabble and Neil brought Andy and Charlie up last night and we all played scrabble and watched Sean White.   

I’ll let you know when we get out.

Margot

Topics: Progress Reports | 22 Comments »

Globetrotters and Valentines

By Margot | February 14, 2010

Sam almost made it to his Valentine’s Day party on Thursday but started feeling pretty cruddy about an hour before we were going to go.  He wrote out all of his Valentine’s the night before.  He loves to do that.  I dropped them off to his class and picked up a huge bag stuffed for him and Ms. O’Donoavan sent home some cookies and cupcakes too.  I was able on Thursday to go with Charlie to drop off his little Valentine’s at preschool.  His favorite Valentine he received was from himself.  He insisted on doing one To Charlie From Charlie and taping the stickers on there and everything and then when he was opening his up he got the most excited at opening his own.  It cracked me up.  Mid-morning on Thursday I went to Andy’s class while Neil stayed with Sam.  Andy was really happy that I was there and I got to help the kids do the craft table and make Valentine’s for their parents or someone special.  I kept teasing them all that they could make them for their husbands and wives which was a funny joke to the fist graders.  Andy made his Valentine craft card for Sam and put the ultimate compliment on it.  “Sam, You Rock, From Andy.”   Sam made one for Andy at home with all of the art supplies we now have handy thanks to Lisa B. and Mrs. Meara.   Andy got a card from a girl who had written “I love you”  in it and of course he showed it to practically everyone in school.   Maureen came over for dinner on Thursday night and the boys were very happy to see her.

Friday was a long day in the hospital getting blood and platelets and velcade and then zooming over to radiation by 3:00.  Dr. Murphy is radiating Sam’s whole skull so that we are not whacking the mole with different spots.  He is a great guy and explained to us how he is blocking Sam’s brain with electrons and using photons to get through the bone.  Sam did really well and was not panicked with the mask at all.  After the skull the liver radiation goes lickity split and we were back in time to catch Andy’s basketball game.  Colleen had brought Andy and Charlie to the game for us.  Andy did really well -made four baskets.   After the game we went to see the Harlem Globetrotters at the Sports Arena (Thank you Luke and Bonnie for the awesome tickets).  The boys loved the show.  It was Sam’s first genuine smile all day and they all laughed at all of the antics.  All three boys have been trying to spin the ball on their finger since the show.   It was a long Friday but we packed it all in and Charlie even made to the late end of the show relatively melt-down free.

Saturday I took Charlie and Andy to Ty’s bowling birthday party.  Sam was feeling pretty cruddy and cranky all day with stomach and leg pain issues.  He’s not walking much again – more on that later.  He and Neil went to see Percy Jackson together and Neil said it was a great Sam/Dad date.  Last night Sam spiked a fever and had a lot of leg pain.  We called the on call doctor and she recommended the ER since his counts are ok.  Unfortunately, the last two times we’ve been through the ER, we were admitted anyway and the nurses and doctors down their seem befuddled by all that is going on with Sam.   We finally decided at midnight with his pain getting bad and his temp closing in on 102 that we’d better do a direct admit.  Colleen came over at midnight to stay with the boys while Neil drove Sam and I to the hospital to help get us in since Hem/Onc is shut down after eight.   Thank you Colleen!   Hope you got some sleep. 

Which brings us to today.  Happy Valentine’s Day in romantic Rady Children’s ;-).  Sam is sleeping now and we’ve upped his pain meds for the leg pain.  We started sorafenib yesterday.  It is supposed to work well with radiation.   He hasn’t had any liver pain since we started radiating which is a good thing.   Uncle Matt has Andy and Charlie today and I just called for an update.  They are 1/4 of the way up Cowell’s mountain and Andy got on the phone and said, “this is awesome!”   It’s a beautiful day for a hike and while my heart is heavy that Sam is stuck in the hospital, I’m so happy the littler guys are out and about and having a great time.

I owe a million thanks to people.   Thanks to the PBE families for the card and all of the gift cards.  They will be hugely helpful and the card itself was so nice.   Thanks to Rebecca for the gift cards and Lisa for all of the art supplies and Colleen and Meredith for all the help with everything.  Thank you Kuhn Family for the awesome Valentine’s Package.  I know I’m missing people but I feel that I must get this drop into the bucket at least.

Hoping for a jailbreak soon.

Margot

Topics: Progress Reports | 9 Comments »

Radiate

By Margot | February 10, 2010

The title of today’s post has two meanings.  Erik Ludwinski passed away last night.  His mother Donna has been our friend and support since we started this journey and Erik has been an inspiration and an example to nearly every NB family.  Sam and I were able to have dinner ( a 10pm dinner)  with Erik and Donna in Philadelphia.  Erik was starting MIBG therapy just as Sam was finishing it up.  Sam and Erik were able to talk a little bit about what Erik could expect from MIBG.  Both Erik and Donna radiated kindness and their love and friendship for each other was so evident.  Please stop by Erik’s website today and leave a message for his amazing family: http://www.caringbridge.org/visit/erikludwinski

The second meaning of course pertains to Sam.  We started radiation today on his liver and his skull.  We did the mapping on Friday and he did well with the liver but hated the mask over his face for his skull.  He was very nervous to have to put it on today and we gave him some ativan beforehand to calm him down.  It turned out that today was the opposite.  It was painful for him to keep his hands over his head so long for the liver radiation and it seemed like forever sitting in the waiting room crying while he was getting that done.   The mask went better though.  The awesome tech did not put it on too tightly and I think since he could put his hands down he was much more comfortable.  Tomorrow and the rest of the ten treatments should go much faster but I’ll make sure he has more pain medication on board beforehand.  Dr. Murphy (the radiology doctor) is very confident that this should work for Sam and warned Neil that we should be hydrating quite a bit for tumor lysis (that means tumor death, wohoo!).  We are radiating the liver, a spot on the skull and a tumor in the cavernous sinus area.   Sam has been having some blurred vision in his right eye and is sensitive to the light again.  Hoping the radiation works as well as it did on his knees because he is having no knee pain since we radiated there.  

We’ve had a pretty quiet week.  Lots of hospital time getting platelets and IV vitamin C.  We had velcade on Tuesday of last week and will have another dose on Monday.  Friday’s platelets were 5, Monday’s were eight. today’s were 16).  We went to Meredith and Ron’s for Superbowl and Sam mostly sat on my or Neil’s lap on the couch and watched the game.  The other two boys had a good time with all of the kids.  Charlie and Andy were for the Colts until New Orleans won and then Charlie said “I was just tricking you. Yay Saints!” and Andy said, “I didn’t really care who won.”    I was glad New Orleans won ( was thinking of you, New Orleans clan).  Sam and I have read and read and read. We took a break from Harry Potter for a while and read Percy Jackson and The Lightning Thief.   We finished it on Monday and had a lot of kids in the clinic tuned in to what was happening in the story.   It’s pretty exciting story and we are prepped for the movie.  Andy and I are reading it too but he is a bit behind because I haven’t read to him for six hours at a time.  Yesterday we didn’t have the hospital and Charlie went to school and then had a playdate with Hank.  Neil and I just hung out with Sam all day playing Scrabble and Chess and watching the food channel.  It was a nice day.  Sam is getting so good at Scrabble, he beats me by figuring how to get to triple word score every time.   He’s been up and alert and mostly happy unless he’s in a drug induced bad mood.  Otherwise though he has been so sweet to the boys and Charlie always brings a smile to his face first thing in the morning.  He still calls Charlie “baby dude”  and he always wants to know if Andy is home yet on the way home from the hospital.  Monday after the hospital we got out for a bit and went to look at the seals on the beach in La Jolla.  It was a glorious day with big white caps coming in and a brand new baby seal on the beach born ten minutes before we got there.  The boys were enthralled with the little guy and mother.  I’ll post pictures when I get home to the camera. After the beach we went out for pasta and then a quick twenty-five minutes of video games at Dave and Busters.   Sam won all of the racing games.  The virtual bike is really a better bike for him to ride ;-).  The games brought a big smile to his face and brought out his competitive side.

Andy and Charlie are doing ok.  Charlie is loving school now and is taking swimming lessons with Jett at a new place which he loves.  He looks forward to swimming all week and he’s progressing much better than he did at the other place.   Andy is doing well at school and basketball though he is getting tired of being shuttled off I think.  He let Neil and I have it last night after we deferred to Sam for something.  Ugh.  I talked to him before bed and he perked up some.  Dropping him off at school this morning he was back to his happy self he and I raced for the school gates before they closed them and he had to get a late pass.  We made it by the skin of our teeth and gave each other a high five.  I’ve been really bad about getting him to school late lately.  Neil picked him up from his half day today and got to spend some special time with him.

Thanks for checking in on Sam.  Thanks for all of the help and prayers and good thoughts.   I know I always say this but I will try to post more often.  I have been in a bit of a dark tunnel mentally and I’m working on finding that light.

Margot

Topics: Progress Reports | 11 Comments »

Home Again Home Again Jiggety Jog

By Margot | February 3, 2010

Just a quick update to say that Sam walked (albeit slowly) out of the hospital this afternoon after they discharged us.  His fever and neuropathic pain has resolved for the most part and we are all now home again together.  I feel a little bit like we’ve been on a yo yo hospital stay lately and it’s nice to have us all under one roof again again.

Margot

Topics: Progress Reports | 12 Comments »

OK and BMX and much later ER

By Margot | February 2, 2010

Charlie will proudly tell you that he can spell both OK and BMX. 

Sam had a pretty good week last week.  He didn’t have any break through pain that was not controllable and slept through the nights and was generally up and around.  He’s on 20mg oxycontin twice a day.  He got platelets on Tuesday (11)  and Friday (14) and had IVIG (I think that’s it - helps with one of the immune system functions that is affected by rituxan)  and IV vitamin C on Thursday.  He had a horrible reaction to the IVIG (I think that’s the wrong name and I’m channeling my mother.  Neil will cringe but it’s the middle of the night so I’m not going to wake him up to get the right name.)  Sam had violent chills and spiked a 104 fever.   Dr. Willert gave him some extra oxygen and  we thought we might admit him but he was back to normal with some solumedrol and a couple of hours.  So very happily after a long day waiting for platelets on Friday, he was home for Andrew’s birthday weekend extravaganza which I will get to in a minute complete with pics.   Sam’s LDH dropped to 2400 which is funny to say but it was as high as 6000 during the very bad week when we were in the hospital.  He didn’t make it to school at all, I don’t think he’s up for a full day at school in any case but we were going to try and get there Friday but the platelets took much longer than expected so we missed it.  Sam is really hoping to go some this week.  He and I have been watching a lot of Foodtv in the clinic.  We like Chopped and America’s worst cooks.   He finished up radiation to his legs and is walking much better.

On Wednesday the kids have a half day and Sam was feeling pretty good so we all picked up Andy and went out to lunch and to buy him a BMX bike.  We went to the bicycle warehouse where the kids can ride around on the bikes before they buy them.  All three kids rode around the bike store on different bikes and Sam said his knees didn’t hurt at all.  I was in a dilemma as to what to do about Sam and the BMX party and had several back up alternatives (movie with Mack and Tanner and Joe,  Movie and wii night at Mack’s house with his friends.   He insisted he wanted to go to the party though.  We tanked him up on platelets on Friday and I figured we’d just see how it went and we could hold on to him if we needed to.  We bought Andy a very cool BMX bike that he was thrilled with.    Friday on his actual birthday Andy woke up and opened  his presents from Grandpa and Grandma Joan.  Grandma Joan got him some very cool clothes and Grandpa got him a Lebron James jersey and he put it on immediately to wear to school.  It was funny, I had to talk him into the new long sleeve shirt underneath it.  Grandma Joan and Uncle David were here which was very nice and fun for the kids.   We brought brownies (Andy’s favorite) for his class and we all went to Pernicanos ( a local pizza joint that is very kid friendly) for the party before the party on Friday night before the basketball game and had pizza and cake number one.  Sam stayed on my lap for much of the beginning but then ate with the kids in the boat and hung out with them once the food came.  Andy had a great basketball game and made one basket.  He shot about 100o times and lately he keeps shooting from as far out as possible with a baseball throw so he can make a “long shot.”   I’m sure it’s driving the coaches crazy. 

On Saturday morning we did a trial run at the bay with the bikes and Sam did fine on his bike.  The party started at 7 at night and as soon as we got there and we saw the track I was thinking there weren’t enough pain pills in the world to make it a good idea for Sam.  In true Sam fashion, he did it anyway.   Andy had the first lap and he was pretty nervous sitting there listening to the rules staring down at the first big hill.  I have to say there were some shaking six/seven year olds.  Andy made it through the first lap with one wipe out on the hill.  Sam wiped out twice on his first lap because he  didn’t make it up the hills and I yanked him off the course and after he sat on my lap for a while he said he wanted to try it again and Neil ran with him the whole way and helped him up the hills.  He did about three or four laps total and did fine.   Neil ended up taking him home early and despite my worst fears of a bad night to come, he was comfy on the couch when we got home.   Colleen joked with me the next day, “Maybe you should take him parasailing today”  I didn’t catch the “today”  part and said, “Yeah maybe that’s a good idea, maybe that would be gentler on him.”      She was kidding of course.  To Sam’s credit and iron will, almost all of the kids wiped out on the hills their first lap and I think all of the parents were thinking the whole thing was going to be a disaster.  They all got the hang of it after that and ended up having a blast.  Andy did lap after lap and was the last guy out there still doing the last lap at 9:15.   He said it was the best birthday party of his life and now several of his friends want to have their party there too.  He said on Sunday as he and I were throwing the football and he threw a perfect pass, “I like myself at 7, did you see that pass?”  He and his Dad went out yesterday and threw the ball together for a while which was good.  Charlie was out there on his bike with training wheels  and Uncle Matt and Uncle David  and I ran with him the whole way to get him up the hills.  Uncle David said he kept saying, “I don’t need your help, get away from me,”  and then he’d get to a hill and turn around and say, “I need a push” and then as soon as he was up the hill he said “Get away from me, I don’t need your help.”   Charlie gave me and Uncle Matt and Uncle David quite a workout.  As I was huffing pushing him up a hill, he said, “I like the up and down of this.”   He didn’t even want to come in for cake until much later.

I’m posting pictures below of the party but am actually finishing this post up in the ER.  Sam spiked a fever last night around 12:30.  He had velcade  and platelets and IV vitamin C in the clinic yesterday and we knew his ANC was good so I thought we were in for a quick blood culture and a turn around home but his fever didn’t go down after tylenol, it went up to 103 and he started to hurt all over (velcade neuropathy I’m sure but pretty severe) and his oxygen levels dropped.  So they put him on some oxygen and gave us a chest x-ray.  One of his lungs sounds a little crackly and he was on some pain meds so the combination may have caused oxygen levels to go down.  Anyway, we are going to stay here.  There is no room in the hem/onc ward so they are sending us to the  IMU  (intermediary medical unit)  but there are no beds there either so we’ve spent the whole night in the ER and now it’s 7am.  Sam’s sleeping peacefully now and I’m guessing they’ll send us up shortly.

Never a dull moment.

birthday boy

birthday boy

 

andybike2

andybmx

a few of the boys

a few of the boys

 

Charlie boy rocking the training wheels

Charlie boy rocking the training wheels

 

Sam brave and determined

Sam brave and determined

 

Sam and Dad

Sam and Dad

 

family

family

Topics: Progress Reports | 11 Comments »

HAPPY BOYS

By Margot | January 24, 2010

Sam came home yesterday afternoon.   Thank you nurse Sheila  for working so hard to get us out of there.   The boys were so happy to see each other yesterday afternoon.  Neil brought Andy and Charlie out to meet the car.  Andy said earlier in the morning, “I’m going to be so happy to see Sam when he gets here I’m going to want to jump on him, but I won’t because he’s still in some pain.”   They were laughing and smiling at dinner last night and Andy and Charlie were bouncing off the walls.  It was great to hear Sam laughing with his brothers and to see him smiling this morning.  He had a good night last night with no break through pain, a little bit of neck pain before he went to bed.  He’s hobbling around the house this morning and wants to go out to breakfast.  His appetite has been awesome.  While he was in the hospital, he sent me out in the pouring rain for babyback ribs, In and Out Burgers, French Toast, etc. and the great thing is he was actually eating it.    He got platelets on Friday night in anticipation of going home.  He’s needing platelets about every three days.  A transfusion gets him up to about eighty five and then by day three he needs another transfusion.  His face is still a bit swollen and he’s had neck pain lately (may be neuropathy pain from the velcade so we put a warm pack on it (and or a bath) and that helps.  His face is still pretty puffy and his belly is big.  He is breathing  a little harder though his oxygen levels are still 100%.  It’s not noticeable really unless you look for it.   He seems to be taking a deep breath with every breath but he’s not struggling to breathe at all.  He seems great this morning, and just having him home and out of the hospital bed is fantastic.   We are taking things one day at a time, or trying to at least.    He is on several lower  toxicity drugs that work well on Sam’s cells in the lab (thank you Dr. Sholler and Erika) and we are lining up some new things for next week. 

He did a lot of art in the playroom while we were in the hospital and he and I stopped on the way home at ToyRUs for some bakugans and more art supplies.  Sam is a really patient and detailed artist. The playroom volunteers were really impressed with him.  I was thinking of asking Mrs. Meara, our art teacher, for some project ideas while he’s home.  Charlie is here wanting to put the computer on “spell mode.”  He likes to type his name over and over. He’s recognizing all of the letters now.  He’s  a little sponge these days.  He likes to spell everything before he says it.  He’s not usually close, he’ll say, “I want my MYOWQ  basketball shoes on today.” 

Please keep all of our NB friends in your thoughts and prayers, Erik Ludwinski, Jack Bartoz, Sydney Dudley, Melina Riniolo  and Patrick Chance in particular this week/month.   Thank you to everyone for all of your help, listening, running errands, etc.  Don’t know where we would be without the  monster support of our friends and family.

Margot

Topics: Progress Reports | 18 Comments »

Working Towards Getting Sam Home

By Margot | January 21, 2010

Sorry about the radio silence.  Sam has a good couple of days.   He slept through the night once we upped the pain medications and added Decadron and the chemo.  Probably a combination of all of it helped to make him feel better.  Yesterday he was in the playroom from two to four and six to eight.  He can stand up and walk a little bit better.   We have had some great movie nights and chess games.  The pain team started him last night on oral continuous medication instead of IV but they left him the pain button in case he had break through pain.  This is in anticipation of going home.  Last night he was restless and uncomfortable and pressed his pain button twice.  He didn’t seem to want to and we kept trying pillows under his knees so this morning we upped the dose of the oral medication and he seems very comfortable today.  We have been back and forth to radiation in the ambulance since Sunday and the ambulance guys and nurses have been great.  They like Sam a lot.    He’s sitting here next to me playing Mario Soccer.  I got him some food from the cafeteria for and afternoon snack and he just said, “The cafeteria is evil, don’t go there anymore. Can I have some of Grandpa’s baked potato?” (Grandpa made him a baked potato yesterday and we have left over in the fridge).  He’s eating well, the steroids have done wonders for his appetite and really helped with his pain.   We are hoping to head home within a few days.

I owe a million people Thank yous and I won’t get to them all so to everyone who has helped out this past week,  Thank you.  Thank you.  A special thank you to Robert Lawless who gave us two awesome tickets to this past weekend’s Charger game. He walked into the lobby of the hem/onc  building and said he wanted to give the tickets to a family who needed them.  Dori in the front thought of us and I came out and told him that I wasn’t sure if Sam would make it to the game but that my seven year old would love to go and he gave me the tickets.   I thanked him over the phone and he said it was his birthday present to himself.  It was a wonderful thing to do.  He sure made Andy’s birthday month.  Andy got to go with Maureen and boy was he excited.  We bought him a prepaid cell phone in case he got separated and he called us all about fifty times to tell us what was happening and where he was.  We debated telling Sam about Andy getting to go but in the end figured that we (Andy) couldn’t keep it a secret from him and when we told him he was really bummed he couldn’t go.  He didn’t want to talk to Andy at all any of the times he called and said he didn’t want him to bring him anything back.  Then when the Chargers started to lose, he got a smile on his face and said, “Let’s call Andy.”  and when they lost he said smiling, “It must suck to be at the game and have the Chargers lose.”  I know it sounds awfully mean but it was very funny.  So, it actually worked out well for both boys.  Andy got a great day and it wasn’t too hard on Sam.  

Thanks to Cathy and Colleen for helping me laugh through our tears.

Also, thanks to everyone who is helping with all of our errands and helping to plan Andy’s BMX party which is going to be the biggest pain in the butt party for the parents ever.  My friend Cathy thought maybe we should just top it all off and give a live goldfish as a party favor.  Sam said if he’s home on the pain pump he’ll just put the backpack on the handle bars and hold onto his lines so he can ride. Our boy is down but not out.

Sam is getting platelets again today.  His platelets are 11.  All other blood numbers are holding steady and white count is nice and high.  His scan showed disease all throughout his liver and a couple of spots on his lungs (though not totally certain those are NB.  Working on a low toxicity treatment plan for liver mets.

Hoping to be home soon and back at some fun. 

Margot

Topics: Progress Reports | 21 Comments »

Hard

By Margot | January 17, 2010

We have had a hard couple of days. Sam had an awful night on Thursday night with abdominal pain and leg and arm and rib pain.  We admitted him on Friday morning and he is on a pain pump.  Once he got the pain pump going he was able to eat and play chess and happily listen to a lot of The Goblet of Fire.  Last night he was uncomfortable again and he and I were up quite a bit of the night pressing the pain button, getting extra boluses from the nurses and trying to get him comfortable and unsweaty.  He ran a fever of 102 and so the nurse and I put ice packs in pillow cases all around him and rubbed him down with cold wash cloths both of which made him feel better.   We upped the continuous medication this morning and he is doing a bit better today.  His legs are very bad and it was evident in the scan why.  His knees and the area just above and below them are full of disease. The rest of the bony disease did not look as bad as we thought it would be.  It looked better than the Philadelphia scans in terms of his thighs, pelvis and upper arms, they seemed pretty clear in this scan, though there are spots on the shoulders, one on the chest and one on the pelvis from what I could see.   The very bad news is that it  looks at though there is liver involvement but we don’t know the extent of it yet- haven’t received the final report.  He is doing a CT scan now with Neil to confirm.  They let the boys in for a visit today and they all played video games.  Sam’s right eye is swollen again and so he was trying to play by squinting out of one eye but was game to do it as usual. We played some Trivial Pursuit Junior and then Charlie and Andy got a bit loud and Sam lost his patience.  Neil took them to Dave and Busters for a while to do something fun with them.  After they left Sam beat me at chess.  We had a conference call with Dr. Willert, Dr. Roberts, Dr. Sholler and Dr. Durden this morning and after discussing options we decided to start Doxitaxil (I think) and velcade today.  Shelia hung it about 4pm.  Dr. Sholler is working on testing different agents with Sam’s cell line.  Fortunately or unfortunately his cells are growing beautifully.   We are so lucky to have her in our corner.  We are grateful to our team for their time this morning.   We will be doing emergency radiation to Sam’s knees tomorrow to try and help him out of pain.  He is getting platelets later tonight as his platelets were 13 today. He has stem cells in reserve if we need them.    He is generally not in good shape but has been so sweet and happy once his pain has been under control.  It was 5 am this morning after we’d been up every hour or so together and I heard Sam out of the blue say, “Mom, what exactly is a hurricane?”  It cracked me up since most of our conversations had involved where it hurt and how to solve it.    He also when he finally got comfortable said, “Goodnight, Mom, can you please wake me up early enough to finish watching the movie with you tomorrow?”  It was funny because it was 5:30 in the morning and he was so sweetly saying goodnight. 

Neil and I have been through the wringer and are pretty emotionally spent but are better and more optimistic today since Sam’s pain seems a bit better.  Thanks to everyone and I’m sorry to have waited until today for the update.   My Dad and Stephanie are coming in on Monday to help out since we will probably be in the hospital for a while.

Margot

Topics: Progress Reports | 47 Comments »

Up and Down Days/Scanning Tomorrow

By Margot | January 14, 2010

Sam has had up and down days in terms of pain.  On Saturday we all went for breakfast  at Konos with Vickie Buenger, the inspiring Erin’s mom,   http://www.erinbuenger.blogspot.com/   and got to spend  some time with her at our house.  Vickie, so great to get to see you.  You were such a hit with the boys. Sam used the king square in chess you taught him to catch his dad’s pawn on Sunday.   Tanner came over afterwards and I took him and Sam and Andrew to go and see Avatar which they all thought was awesome.   Sunday he played baseball at the park with everyone and though he didn’t run, he stood and hit the ball and walked well.  By Monday though, I thought I ought to write a post titled “Full Circle”  as we had come back another 180 degrees to a somewhat painful day.  When Sam has not been feeling well he has only wanted quiet and to be read to and me or Neil handy immediately when he needs us. We finished up The Prisoner of Azkaban and have started on The Goblet of Fire.  Sam wants us to lay next him as much as possible and the bath still seems to help him painwise.  Tuesday again was a good day and he walked some at the beach Tuesday night and we were thinking he might even go to school on Wednesday and we were talking about baseball.   His pain has been moving from one arm to the next and the leg pain seemed to have gone away so we were hopeful that it was tumor kill.  Yesterday morning he woke up and his arm hurt too much to go to school and by yesterday afternoon, his leg pain was back with a vengeance and he said his whole body hurt all over.   I spent much of the afternoon trying to get his pain under control.  I’ve learned this morning from the pain team that I probably overdid it a bit with the long acting stuff because if it all peaks at the same time we might be in trouble that we don’t want to be in.  She said Sam probably has a tolerance for a lot of pain meds but that we should probably up the dose instead of giving more of them at staggered times.   He slept most of  last night but needed another pain pill at 4am.  Today it just seems to be his left leg and he is better than yesterday.  Maureen came over yesterday afternoon and spent some time with us and Uncle Matt showed up later.    Sam’s LDH is 3700 and his HVA/VMA is 92 and 117.     We had been told that the earliest MIBG we could get was mid-February but then the nurse called yesterday and said she could get us in Friday at 4 and for the scan.    We had the injection this morning and were hoping to do vinblastine today.  We didn’t do it on Monday with Rituxan because Dr. Willert was worried about Sam’s platelets. They were 70 but only because of the transfusion he had the previous Friday.   Today they are only 39 so we are too low for vinblastine again.  We are sitting in limbo now.  Neil has been working tirelessly on an alternative plan.  It may involve gleevac but we are not sure.

Andrew and Charlie have been hanging in there.  It’s been tough on them to be home when Sam is feeling rotten because they have to stifle a bit and if you know Andy and Charlie well you know that they are not all that stifleable.  Thanks so much to the Brunettes for taking them both to basketball on Monday night.  I sat and read to Sam which as nice and quiet.    We actually took Andrew up to the park on Tuesday night in the dark and I had him run from the car to the light ten times.  He thought it was great fun.   I brought Andrew in to the child-life specialist on Tuesday to have his own time to talk to someone outside the family about things.  It worked out well and he really liked it.  Heidi said he’s a great talker and he told me he had a lot of questions for her.   We set a time for every Tuesday and he’s working with Heidi on a book about himself. Unfortunately his therapy hour has also had the affect of  planting  into his head that Sam gets all the attention and he doesn’t get any.   This thought has been driven home to him in the last couple of days because Sam has been in pain and is getting most of the attention from us and has been demanding it.  We have been trying to steal time with Andrew and reassure him how much he is loved.  It is a tight rope.

 Charlie has been happily rolling along having playdates with Jett and playing with Elizabeth who I credit totally with  keeping his routine and happy attitude consistent .  He seems to be becoming less shy and coming out of his shell some.  He actually went to playdate at Jett’s house with no fuss at all on Saturday while I took the boys to the movie.

Please say some prayers and think good thoughts for Sam.   I will post after Sam’s scan on Friday.  Andy has a basketball game immediately following so it may be late on Friday night.   Things have been so up and down that it may be that tomorrow things are totally different.

Margot

Topics: Progress Reports | 16 Comments »

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