Back to school….
By Margot | March 23, 2010
A quick update since many are wondering how we are doing. Andy went back to school yesterday and was warmly received – he also got a report card and is doing 3rd grade math and 2nd grade reading and most of his scores were advanced so you can only imagine how tickled we are about his schoolwork. Most importantly, he’s seeming to adjust to life without Sam ok and though we know we have some work to do, we are thrilled that he is engaged in his life. Andy has the warmest smile and, like Sam, is friendly to everyone. He always plays 4-square after school with the same kids using an impossibly HUGE ball. I played with him yesterday and I could only use my butt to hit the ball – I only lasted 2 serves 🙂
Charlie resumed swimming lessons yesterday with his pal Jett. He loves the water and we can’t wait to have him in the pool as the weather continues to warm. Charlie won’t let me kiss him anymore – he wipes it off. He has been doing this for a few months or so and so I have to figure out how to kiss him and am trying “surprise kisses” and “super-glue kisses” which can’t be wiped off. His lip is recovering from the battle with the fire-hydrant on Sunday so we’re happy about that.
As for us, the only answer is to jump back in. Bills, insurance, and other unmentionables are back on the forefront. The world keeps moving despite our despair. I am just focused on activity – Sam never ever felt sorry for himself so I’m trying not to do so as well. But it’s tough and I pray for strength every day.
Margot and I played tennis this morning. Sam LOVED tennis as well (of course, it was a sport!). Sam handpicked my racket for my birthday and he would have been happy to see me hit. Last night, Andy & Charlie were picking on Margot as she tried to read to them – now Sam was the all-time picker-onner but he would never allow anyone else to pick on Margot – Margot missed Sam coming to her defense and could hear him saying “Andy, Charlie – leave Mom alone!” We MISS YOU LITTLE BUDDY!
We have more “Because of Sam” stories coming down the pike – there are a number of therapies he helped drive so stay tuned – we hope they are promising. We are also very thankful for all of the cards and emails – we’ve really only answered a handful. It’s just tough and we’re not sure what to say other than THANK YOU – we love the comments and the emails.
We will post the agenda for the April 3rd All-Star Party later this week. It should be fun so PLEASE make sure to attend and bring some kids.
Neil
Topics: Progress Reports | 7 Comments »
Because of Sam…
By Margot | March 21, 2010
Because of Sam….
A friend of mine who lost a daughter to neuroblastoma almost three years ago told me there is not a “before Sam and after Samâ€; he told me that there is a “before Sam and Because of Samâ€. Well, this is a “Because of Sam†story.
Almost two years ago, I was at the ASCO (American Society of Clinical Oncology) 2008 Annual Conference in San Diego. It is the largest oncology conference every year and I was lucky it was held in San Diego. I stopped at every presentation in the huge hall and stumbled across a PhD, Andre Bachmann, from the University of Hawaii. He was presenting some work on neuroblastoma which was years from the clinic; I broke down and told him I don’t have that kind of time and asked if he had something else. He did. He told be about his work with a drug called DFMO which is used for African Sleeping Sickness. I listened and through another father at the conference, we connected Dr. Bachmann with a clinical oncologist (an MD) who could put this into the clinic if it made sense. Our foundation, www.magicwater.org, helped fund the preclinical work that assessed combinations that would work best with DFMO.
This week, almost 2 years later, the clinical trial of DFMO and Etoposide opened and the first child enrolled. His name is Ryan Reardon and his website is www.for-ryan.org. What’s great about it is that Ryan was able to go to school this week for the first time in a very, very long time.
I hope this treatment helps Ryan and other kids. And if it does, it’s because of a beautiful little boy with red hair who loved school and every sport and was the best big brother imaginable.
It would be Because of Sam….
Neil
PLEASE PLEASE make sure to keep Saturday April 3rd from 10:00am to noon reserved for Sam’s All-Star Party at Kate Sessions Park near the playground and swings.
Topics: Progress Reports | 10 Comments »
Cheetahs that play soccer and more….
By Margot | March 20, 2010
Wow. Sometimes we’re not sure where to start other than to exhale and say ‘wow. The boys are doing great – they are playing and running and having fun and Sam would have loved that. Margot and I are doing ok but ok has a different meaning now. We’re both reading books on God and meaning of life trying to find answers to questions that are most probably unanswerable.
Today, we went to the SD Zoo – we have taken the kids there billions of times and going with Margot is hilarious since she knows every path, every exhibit, and every shortcut. We started off at the snakes and reptiles – Andy loves anything poisonous so he looks for the “red dots” indicating poisonous and Charlie follows him rabidly.
We meandered past the hippos and things got a bit funny. Sam’s favorite sport is soccer; his favorite animal is a cheetah; there are no cheetah’s on exhibit at SD Zoo but they keep (4) cheetah’s around to acclimate them to people. In all of our years and HUNDREDS of trips there, we have NEVER seen a cheetah. Until today.
We met Taraji, Swahili for HOPE (!). He was being shown off to passerbys to get her acclimated to people. The trainer described her as a “great soccer player” – she had been given a soccer ball at a few weeks of age and it is her favorite activity. Margot and I just looked at each other – we both think Sam is laughing at us and telling us he is ok (Ok, this update is verging on wierd, we know). Hope – Cheetah – Soccer —- crazy stuff.
But a number of things like this have happened – the day after Sam died, I went to the pharmacy to thank the pharmacist. There was only ONE guy in the store and he was in line for a script – they asked his date-of-birth and he said “7/13” which just happens to be Sam’s birthday. He didn’t say a year; he just said 7/13. I would add more but Child Services may read this and lock us up for being crazy 🙂
We will continue to update but once again wanted to say “thanks” to the over 500 people at Sam’s Mass. That was amazing since it was 48 hours notice. Teachers, co-workers, friends, schoolmates — just amazing.
We’re proud of the eulogy – we feel we honored Sam with it.
I think of Racing in the Streets by Springsteen and how some people keep living and others die little-by-little, piece-by-piece. I guess it’s a choice you make and we need to keep making the choice to keep living and we hope to find some insight on how that happens but perhaps there’s less insight and only more effort and attention on family and love.
Andy and Charlie remind us to “stay in the game” – we’ve had close calls with the ER on both: Andy stepped on a nail that got the better of his left foot; Charlie at the zoo today ran head-down into a fire hydrant. We’re pleased to say Andy’s left foot is healing and Charlie’s injuries seem little to a bump on the head, a fat lip, and perhaps a bruise on his cheek.Â
PLEASE PLEASE make sure to keep Saturday April 3rd from 10:00am to noon reserved for Sam’s All-Star Party at Kate Sessions Park near the playground and swings. With faith, hope, and love of which the greatest is love…
Neil & Margot
Topics: Progress Reports | 20 Comments »
Running with the Help of Friends….
By Margot | March 18, 2010
Though it was hard, yesterday was a good day. It was a beautiful day and the service was lovely. Thank you to all who came, we were overwhelmed with the turnout and it was a testament to how many lives our little boy touched.  Father Steven at St. Brigids was fantastic and his sermon was perfect. Neil and I traded off reading the eulogy with Andy providing commentary. I will post it below and we will post an audio version because Andy’s commentary is worth it. Charlie boy did so well during the service and he came up with us and placed Sam’s skateboard near the altar while Andrew placed his soccer ball.
We cremated Sam’s body this morning and it was hard hard. I don’t think we will ever do anything harder. His ashes will come home tomorrow in a simple mahogany box and then we will comission a soccer ball for his final resting place with us. Â
But we know that his final resting place is in our hearts. It is tough to accept that but we know it as true. Our families are still here to help us through this and we will need to find meaning so when they leave, we will be able to move and help Andy and Charlie.
We find inspiration in Sam. We know that if Sam were alive, he would be telling us to move, move or would get us out of the house or we would be playing a game. Do we live our life in honor of the bravest person we will ever know?Â
Below is the poem from Sam’s memorial card that was given at the service and then the eulogy. One funny thing – about 10 minutes into the Mass, Andrew had his ever-ubiquitous left-hand raised in his ever so polite manner. He had a question for Father Steven. Before we close, Charlie and Andrew will show us how to live – at the reception yesterday, they shook off their sorrow and eventually their shirts and shoes as well (Yikes! but it was 75 degrees and sunny in San Diego) and tossed the football around with a few other children.
Happy Memories
I’d like the memory of me
to be a happy one.
I’d like to leave an afterglow of smiles
when day is done.
I’d like to leave and echo whispering
softly down the ways.
Of happy times and laughing times
and bright and sunny days.
I’d like the tears of those who grieve,
to dry before the sun
Of happy memories that I leave
when day is done.
Â
Eulogy
Thank you for coming today to celebrate our son and brother Sam. Friends and family helped shape who he was – and he was SO beautiful! We want to remember – as best we can- a bit about what made Sam Sam.
Sam was the bravest person we know. It’s almost a cliche to say that he was brave and a warrior but Sam had a style to his bravery like he had a style with everything he did. His courage was a quiet courage. He didn’t complain, he didn’t want to be in the spotlight, he didn’t even want his classmates to know where he was when he wasn’t in school. He didn’t want to be a quote unquote “cancer kid.” If the hospital were arranging a baseball game for all the kids with a ride in a limo to the game and it meant he would miss his soccer practice, he would choose soccer practice in a heartbeat. He wanted to be a regular kid and he didn’t want to shout to the world at how brave he was, or what he went through, he just wanted to get out there and get in the game.
When he was a baby people told us he had an old soul. He was always wise beyond his years. He had a wicked sense of humor and he always got the joke. His smile could light up a room but he also had a little wry smile when he thought something was funny. He loved to laugh whether at the Diary of a Wimpy Kid or about something someone else did. It was fantastic to get him laughing so hard he was crying. He was a genius at getting under people’s skin by teasing and he loved to poke, poke, poke until he got just the rise he was looking for.
From an early age he had amazing eye-hand coordination. He was just two when he was hitting the baseball without the tee up at Kate Sessions Park and people would walk by and ask us, “How old is that kid?” he had a three wheel scooter when he was a baby but our neighbor had a razor and he wanted to ride the razor, so by age two he was balancing on the razor with no problem and whizzing around our courtyard. At the same the time he was swimming across the pool by himself, and again people would always ask, “How old is he?” When it was time for a race in swimming class Sam would get a huge grin on his face – it was his favorite part. He was competitve at everything he did and he always wanted to win but somehow he managed to be that way and be nice about it.  He was the first of our little group of babies to walk and just about about as soon he walked, he ran. His favorite animal was a cheetah because it is the fastest animal alive.
Sam also had a great sense of space. He played chess with a sense and strategy that floored most people that played with him. We loved his little smile when he knew he had you on a move. I always think about him helping me to pack the car or fix something mechanical. I would be struggling with it and he would simply say, “Mom, you put that there, that there and this sideways” and it would always be a perfect fit. He could do Charlie’s transformers in two minutes with no problem after I’d thrown them down in frustration. He figured out how to use the triple word score in Scrabble every time and if you were on his team and offered him an eight point word suggestion, he would say, “No, no, let me think.” because he was always going for the thirty pointer. Because he was in the hospital a lot, he had a lot of video game playing time and he was fantastic at almost every game. It was so funny to see the little smile come to his face when he would meet someone in the hospital or a new friend would come over and say, “I’m really good at this game.” They were rarely a match for Sam. When he wasn’t able to do sports, he was always able to win at video games.
Soccer was his true love as a sport and even when he had lost his speed and his hair, he was out there on that soccer field and usually his dribbling skills were such that he could play at the same level or better than everyone out there.  I think there was only one season out of all the years that he played soccer when he didn’t score a goal. And oh, the cheers that went up when he scored!
Sam loved art and was so detailed about everything he drew. We remember him on our back patio as a one year-old working away at his easel covered in paint and smiling and later doing much more advanced art at the hospital and at home. His eye for detail was amazing. He always knew what someone looked like or what they were wearing and when people came to me and said hello and couldn’t remember if they were from the hospital or soccer or school or swimming, he would say, “Mom, that is so and so’s mom, he was on my soccer team three years ago.” The week before he died Neil was wearing new running shoes that he’d had for a while but never worn and Sam -lying on the couch after having us change his medication – looked at them and said, “Dad, are those new shoes?’ He was an amazing gift giver. He could pick out gifts for people that were just perfect. He was such and observer that he knew what people would want. Sometimes it was a five hundred dollar gift, but it was always spot on for the person it was being bought for. In that same vein he was a listener, even with limited hearing he wanted to hear what you said and he remembered it. He loved to hear “Sam Stories” that Neil and I would make up when he was a baby and then we amended them to “Sam, Andy and Charlie Stories.”  He loved to listen to me read to him in the hospital. he would groan if someone came over to talk to me during Percy Jackson and start poking me and commanding, “Read!”
A huge part of what made Sam – Sam, was being a big brother. He was the quintessential big brother! He loved his brothers fiercely and he never missed the opportunity to bring them something when he was out, to tell them what to do, to teach them something, to fight with them like only brothers can fight and to laugh and play with them. He always wanted to know where Andrew was and what he was doing and if he was home yet from school if he was at the hospital.  He was his best friend and his confidant and it was so wonderful to stand outside the door of their room at night and listen to them talk and laugh and tease each other about girls. He called Charlie, “Baby Dude” and he was so good with him and he loved to laugh at him. He used to love for us to tell him funny Charlie and Andy stories if we had been home to see them and he was at the hospital. When Charlie was first born Sam was so gentle and good with him and loved to play with him. Some of our favorite pictures are of Sam holding Mr. Baby Dude making him laugh when he was a baby. Sam absolutely adored Andrew and Charlie.
Sam loved skateboarding and snowboarding and everything cool. He was taking skateboarding lessons at four and karate at five.
He had a sense of clothing style that was somehow innate.  He was cutting edge and always about the brands and the brand new shoes. He loved school with a passion and as most kids ask, “Can I stay home from school today?” Sam always asked, “Can I go to school today?” He wanted us to schedule all of his appointments after school if possible and he would get angry if it was a short appointment and we didn’t schedule it after lunch recess.  In his five years of school he never got his card pulled once and he was horrified when Andrew got his card pulled the first time this year.  He loved all of his teachers and his classmates and would always say, “Really, why?” if someone in his class didn’t like someone else. He had hearing aids and an FM system and never wanted to tell anyone if things weren’t working and he couldn’t hear so he faked it until the teachers would finally ask him, “Sam, can you hear me?”
Sam was also a gourmet eater and he always, always wanted to go out to dinner or breakfast or lunch versus staying home. We would joke when Sam was in the hospital that he would always give us “The Food Network Challenge” to go out and find him a chicken breast sandwich with avocado, tomato, and cheese on ciabatta bread and a piece of chocolate cake for dessert.  Or, he’d want us to get three separate things that we’d have to go to three different restuarants for. He loved avocados, pomegranates, salmon, artichokes, and his all-time favorite – tacos. he was a bit like Sally in Harry Met Sally in that he was very particular about everything he ordered and usually there was a twist to whatever was on the actual menu.
On the day he died we told him that he wasn’t going to be sick anymore. He was going to be able to run with the cheetahs and hear and see and breathe freely and eat anything he wants. We know he is up there running in heaven with a huge smile on his face.
People will want to know how we will move on. We don’t really know but we have a thought.  There is a mountain of sadness in our hearts now that Sam is gone. We are not quite sure if that will ever go away. Our commitment is that every day, we as a FAMILY, will build a mountain of love and fun to even exceed the sadness.
So we hope that everyone will take away Sam’s brightness of spirit and make sure you apply it in your own lives…
We love and continue to love Sam with all our hearts. He loved life and he loved his brothers Andrew and Charlie. And for that, we are the most blessed parents and brothers on earth.
We want to close by speaking directly to Andrew and Charlie – your brother loved you more than anything in the world and he would want you to live every minute and get out there and get in the game.Â
As his brothers and friends loved to say:
SAM YOU ROCK!!!!!!!
Topics: Progress Reports | 22 Comments »
Services and Celebration (We are about living!)
By Margot | March 15, 2010
Thank you James for the kind post about Sam as a goalie – it touched our hearts and is part of the subject of this post.
We will celebrate Sam’s life with a Mass and an All-Star Party: Sam’s All-Star Party.Â
The Mass and Reception will be at St. Brigid’s in Pacific Beach at 2pm Wednesday March 17th. Any and all are invited and a reception will follow. Sam’s favorite colors are Blue, Red, and Green – he liked bright colors. We have checked with Father Steven and he is encouraging BRIGHT COLORS so be bold and Sam will love it. We apologize for the late notice but if you can make it, we would love to see you.
Sam’s All-Star Party is tentatively scheduled for Saturday April 3rd in the morning pending permits. It will be at Kate Sessions Park near the playground. Sam, Andy, Charlie and their friends had incredible times there playing kickball, soccer, freeze tag, hikes, baseball, and birthdays. There will be music so get ready to hear some Smashmouth, Bon Jovi, and Queen. It was Sam’s favorite spot in all the world.
Plans are still formative but there will be soccer, 4-square, and games of all sorts. We would LOVE to see people in soccer uniforms, baseball jerseys, and just about any kind of athletic wear. Extra credit for anyone with David Beckham gear. Sam was 100% sports and school and this will be in his fun-loving spirit.  So please also come to play – Sam was NOT a spectator.
Thanks to all for the kind comments and emails. They have been holding us up and are so treasured. Everyone keeps asking what they can do.Â
We would ask that you send or email any special Sam memories or pictures that you might have. The best email is Neil’s (nbcure@yahoo.com). If you have a ton of photos or videos, PLEASE PLEASE find the time to get them onto a CD – you will never know how much it would mean to us.
At Sam’s school today, they spoke to the 4th grade classes and gave the children a chance to feel, talk and just share their thoughts. They honored Sam by playing 4-square. THAT MAKES US SO HAPPY!!!!! He LOVED 4-square and we can still see him moving from squares 1 to 2 to 3 to 4 and smiling the entire time.
Margot, Neil, Angel Sam, Andy, and Charlie (aka Mr. Baby Dude)
(PS – People have asked about donations and how to honor Sam. We are honored that people are asking and our thoughts are to perhaps help fund reading scholarships for kids at Kate Sessions Elementary in Sam’s name, some soccer-related scholarship, or cancer research. The bylaws of www.magicwater.org are broad-enough so that donations direction to www.magicwater.org can be used for any of these purposes (thanks for the foresight John!).  Sam would be very happy being able to help other kids.
Topics: Progress Reports | 39 Comments »
Surrounded by Love and Family
By Margot | March 12, 2010
Earlier this week, Jake, a dear friend of Andy’s told him that “you were my tutor in Four Square. He then asked, “who was your tutor?”
Andy simply replied “Sam”.
Our family and extended family and friends are together on a beautiful sunny San Diego day to help Sam with his journey. Our hero will soon be eating tacos, playing the Wii, and scoring goals in heaven. Andy and Charlie have been kind and loving – Sam is the quintessential oldest boy and the three are truly best friends. As parents, we are blessed.
Please keep our oldest son and his two younger siblings in your thoughts and prayers.
We love Sam, Andrew, and Charlie with every fiber of our being – please send your love as well.
With overwhelming admiration for our son Sam and compassion for Andy and Charlie…
Neil & Margot
Topics: Progress Reports | 49 Comments »
Running
By Margot | March 12, 2010
At 4:10pm this afternoon, Samuel Thomas Hutchison became the fastest angel in heaven.
Topics: Progress Reports | 223 Comments »
Lines
By Margot | March 11, 2010
Sam ‘s got several different lines and every day I untangle the dilaudid drip from the saline or now the TPN and the oxygen line that somehow manages to sneak it’s way in there. Unfortunately after checking the pumps and pausing them for mirapenum and other infusions all day they are completely snarled again by the following day. It’s similar to what my brain has been feeling lately. I’ll think I have a clear vision of what is going on and then things change for the better or worse and I’m completely snarled up again.  Sam had a few long nights the past weekend. One night he had a nosebleed and he kept coughing up blood that was going down his throat. We’d get it under control and then it would start up again. He had low platelets. I thought I had it under control while he slept but when he woke up in the morning he coughed up a huge amount of blood scaring the crap out of him and me.  The following night he basically coughed all night but no blood since he’d had platelets.   Then went things went much better. He had a great few days and nights.  His liver numbers are down again, they are still high but that last few blood draws have them definitely going in the right direction and by quite a bit.  His pain was much less frequent and since we upped his pain medication, he’s hit his pain button a lot less. We are getting ready for the Samarium infusion at UCSD which should help with his pain. According to the doctor who infuses it there are no side effects except that their may be a pain flare before the pain gets better. He said that it can be controlled with steroids.  Neil also has a line on another treatment at UCSD (thank you John London for your help with that) with great promise that in terms of a Hail Mary pass would be thrown by Drew Brees and caught by Antonio Gates.  We are still getting platelets every couple of days and have gotten blood twice this week so far. Sam has been building legos and reading. Yesterday Blake came over and he and Sam played video games for an hour which was awesome for Sam. Thank you Blake! It did a lot for Sam’s spirits.  Liz, our home nurse came, over yesterday afternoon and gave Sam some lasix for his edema and set up TPN for us. Then last night Sam breathing got worse and he had a pretty hard night for the first part of the night. We ended up giving him more lasix at about 10pm to try and help with all the fluid and he seemed to do better after that. His oxygen sats without oxygen are very low and we have cranked up the level of oxygen quite a bit.  Hoping that regular lasix will help get all this damned fluid under control. We are doing a CT today to see what is going on in the lungs and then we will decide what to do about samarium and when.  Sam has just been so sweet saying “Thank you, Mom and Dad,” after Neil and I together help him get through a bout of coughing and spitting and giving him his inhaler to help open his lungs and my heart just breaks into a million pieces.
I’ll leave you with a funny Andy story and one of his insights:   Colleen volunteered in his and Jake’s class today. They are learning about air and matter and the fact that all matter takes up space and she said that Andy raised his hand and said, “my brother is on air right now and maybe I could tell you all about it, it takes up a lot of space.” He’s thinking about the ginormous oxygen tanks in our living room at the moment. He also told me the other night when I was putting him to bed, “You’re just not that lit up lately, Mom.” and I said “What do you mean, lit up?” and he said, “You know, happy.”  That about sums it up.
Thanks to everyone for their help. Charlie boy is doing fine. Less aware of everything going on and still his happy little self.
Working toward getting Sam’s edema under control with regular lasix and then we will go from there.
Margot
Topics: Progress Reports | 26 Comments »
Bonescan Today
By Margot | March 5, 2010
I am sitting in clinic watching a sleeping Sam waiting to go to Nucmed for a bonescan. We are doing a bonescan in preparation for a possible samarium infusion at UCSD. It’s a radiation treatment. Sam would be the second kid to try it from Rady’s, the first patient had great success although she wasn’t an NB kid and was newly diagnosed so different. There is a little one paragraph paper on it having been used on an NB patient who was on a pain pump and was off of it within a couple of weeks.   Here’s hoping. The following is a link to a pretty easy to understand paper about it for those of you who are curious: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472939/  We figure radiation was so successful with his liver and the bumps on his head are literally gone after the skull radiation so maybe another type of radiation treatment is a good idea. It will supress counts but since we have four more bags of stem cells left and Sam’s counts at the moment are no great shakes…Â
Which leads us to Sam’s counts and current condition. He is on oxygen at home now after having developed a nasty cough at the tail end of last weekend. All of the boys had a great visit with my brother and Marty.  They were both like medicine for Sam and he was determined to stay out of the hospital while they were here.    Wednesday we were scheduled to have a bone marrow biopsy to see if Sam’s marrow is just tired after all of the treatment or if it’s packed with disease. We had platelets of 14 on Monday, got a transfusion and then had 14 again on Wednesday.  Today we are at 24.   He got blood on Wednesday as well. Sam’s white counts which has been holding up brilliantly have dropped to the 300’s this week which in combination with a cough and high fevers in not such a good thing.  We have kept out of the hospital as we are on home antibiotics and fluid and the pain pump and the awesome nurse Liz comes and checks on us at home. So Wednesday, Sam’s oxygen level was only 85 and we skipped the bone marrow biopsy and set up home oxygen. He wasn’t thrilled about the idea but it makes him feel much better to have the mask on and he’s been wearing it and wants it on or at least near his mouth all the time. He’s had some pretty uncomfortable nights the last few nights with his cough, pain, and fevers. His cough seems to be getting better though and his oxygen level was better this morning without the O2 so hopefully we are going in the right direction on that front. His sodium levels have been up and down and he’s retaining fluids again now so that his belly and feet are swollen. We got lasix on Wednesday which helped but can’t get it today because sodium is low again. The chest x-ray from Wednesday showed some fluid in the bottom of his lungs which could be from fluid retention or pneumonia. No telling if high fevers are disease or pneumonia.
Neil has a line on several other compassionate use drugs and treatments that could be a “next thing.”  He is talking to everyone possible and exploring every possible idea.  The samarium treatment is important from a pain standpoint. Sam has been pressing his pain button more and more in the last five days and we have upped his pain dose three times this week and are switching today to a continuous drip on the pain pump with an added bolus when he pushes the button and we are getting rid of the oral continuous dose he’s been on.
From a spirits standpoint, he has been such a trooper. We are on the final book of the Percy Jackson series now (what I’ve been doing besides updating). He’s played a lot of scrabble too. My brother figured out a way for me to fold the ginormous jogging stroller we have into the car (have had it since Sam was born and never figured out how to fold it). It’s perfect because it is big enough to fit Sam and he’s happy to ride in it because it is not a wheelchair. So he went to a couple of Andrew’s soccer practices and we walked him down to Yogurt on the Rocks in the stroller.  He hasn’t lasted too long out and about though in terms of comfort. Mack came over yesterday and Sam was feeling pretty rotten and coughing up a bunch of gunk from his chest but he  Sam rallied and played a game of scrabble and was really happy they came. Thank you Lisa and Mack! I know neither of you were probably prepared for what you were in for.
If you pray, please say a prayer for our sweet Sam. In the middle of all his hurting yesterday he told Neil and I that we “are the best parents in the whole world.” All we want to do is be worthy of being his parents.
Margot
Topics: Progress Reports | 33 Comments »
Doing ok!
By Margot | February 28, 2010
Quick update and we apologize for the lack of information. Sam completed radiation to the liver Wed and to the skull on Friday. Liver numbers are dropping. For the other NB parents, AST/ALT, Bili are basically normal – GGT is down by half but still elevated. It’s a good tumor marker so we hope to see the trend continue downward.
Sam is on Sorafenib and with the radiation to the liver, has persistent nausea that we hope will clear as the days march by. We trying to get approval for Tarceva as that and Sorafenib seem to be implicated in his disease. He’s still on a pain pump for bone pain – dilaudid. He is hitting it less frequently and seems to be improving but we want the Old Sam back – running, playing soccer, and being back in school so we need to figure out what to do next. Strontium-89 is FDA approved for the use of bone mets and our radiation oncologist suggested that so we’ll see – it hits platelets but not as persistently as MIBG so we may avail ourselves of this. We’re trying to get compassionate use of a number of therapies as well – it’s time-consuming but very worthwhile. We have been fortunate to have some great support from Childrens SD (Drs. Willert and Murphy and the incredible Joanne and the rest of the nurses). There are some wonderful doctors heading some pharma companies that are helping as well along with some other parents of cancer kids who are helping — it takes a village and our village is becoming a city 🙂
Andy & Charlie are having fun – school, basketball, the usual stuff. Uncle Paul is in from Australia as is Cousin Marty who is the epitome of “cool” – the boys love him (he’s wonderfully sweet) and brings a smile to Sam’s face. Matt & Roscoe are here practically every day —- couldn’t do 1/2 the things we do without Matt’s help and without help from Elizabeth and Maureen and Colleen.
This is a “Neil” update so it’s quick and probably not as fulfilling as Margot’s but what the heck 🙂 Our gameplan is to get Sam off pain medication somehow, keep the disease going backward, and then get him eligible for what seem to be some very promising clinical trials.
AND have fun every, every day. Margot and I are blessed with 3 beautiful boys and we know how lucky we are. Please hug your loved ones every day and keep Sam and our family in your thoughts and prayers (and we promise to update more frequently).
Neil
Topics: Progress Reports | 13 Comments »