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Breathe
By Margot | November 24, 2009
Sam had his first treatment in the hyperbaric oxygen chamber this morning. It looks like a little submarine and he was in there with two other adult patients who were very nice. Sam was pretty nervous to do it but watched Pirates of the Caribbean and gave me the thumbs up through the little window I was able to peek through. The other two patients in there told him they were nervous their first time but after that it just gets boring. I gave him his Harry Potter book and some homework (really when will I ever learn? ;-). It takes two hours and he was grumpy when he got out and learned we had to hit the hospital straight afterwards.  Since the hyperbaric oxygen chamber is at UCSD downtown we were able to stop at The City Diner for breakfast before heading to the hospital and Sam was cheered up by some awesome french toast and a fruit plate and some good songs on the jukebox. He’s decided that if he has to keep coming back for oxygen therapy, The City Diner needs to be part of the package.  We are at the hospital now awaiting blood counts and a therapy plan and then hopefully we will be off from the hospital for the rest of the week with only the hyperbaric stuff first thing in the morning tomorrow and Wednesday.
I have not been sure of what to post here the last few days. Neil and I have had some dark and despondent nights only to wake up to brighter and more hopeful days.  The range of emotions and the speed at which they change has been crazy, such that as soon as I think to post something, five minutes later I’m in a totally different state of mind.   Sam’s urine is looking better – almost clear. His shoulder pain is gone. His headaches and eye pain are better – though his eyes are still very sensitive to light. He was having trouble walking on Thursday and Friday but then yesterday and Saturday did better. His legs were hurting right above the knee. Yesterday he hit a few tennis balls with us and then went to watch Blake’s baseball game with Joe and then he and Joe watched the Charger game with Charlie while Andy went over to Jake’s to watch the game. All of the boys played a little kickball during the baseball game after they lost interest watching and I watched Sam run from the top of the bleachers and thought to myself, “Why of course he’s going to be fine, look at him.” Sam mostly stayed on the couch during the Charger game and didn’t get up and pass the football with Joe as is his usual but then after the game they got out the skateboards and Sam sat down on his and zoomed down the little hill in the courtyard and Charlie dove on his belly on his and zoomed head first.
Backing up, Dr. Maris called us on Thursday and said that the scans are stable from the last set of scans which were greatly improved from the previous scans (before the first MIBG). He said that there is nothing on the scan to correlate with his head or eye pain and he wanted us to do the spinal tap and rule out menigitis so that we can move on to the next therapy. He said that the CNS risk is only theoretical and we should rule it out if we can rule it out. So, with some trepidation we went ahead with the spinal tap on Friday. It was negative. While he was asleep we also did a bone marrow biopsy since we missed the one that was scheduled at CHOP for last Monday.  So up until now, I’ve given you all of the good news. Dr. Sholler called this weekend. Erica came in over the weekend and plated Sam’s cells in Dr. Sholler’s lab.     The marrow is very heavily involved. Sam’s LDH Friday was 2400 and his VMA and HVA were 24 and 31 respectively.  So, the scans were very hopeful but we are in a tight spot with the marrow. Back on the good news side, Sam’s platelets are 120 and red blood cells are high as is ANC. So he is eligible for several different therapies.  We’ve now progressed on several chemos so we are going to be thinking outside the box. Fortunately, my husband and our team of doctors and parent consultants have several out of the box options at the ready. I’ll post when we have an actual plan but Sam is feeling very well today though wants to be out of this darn hospital.
Charlie is sick today. He’s had the sniffles for a couple of days but yesterday he did the three year-old move of “I think I might throw up.” and then before I could move a muscle threw up all over everything. Last night when he went to bed and this morning when he woke up, I could hear that his whole head was congested and he said his throat hurts.  So hopefully he’ll start to feel better tomorrow and we won’t all come down with it for Thanksgiving. Andy is fine. His last regular soccer game was on Saturday. He made two goals and was named “Mr. Hustle.”  He has been so nice to Sam.  Sam’s been wanting to take a lot of baths lately, they make him feel comfortable and Andy’s been bringing him towels for pillows so he can get comfortable. Sam’s lost about six pounds last week though he’s finally eating again. I think it shocked Andrew to see him in the bath and he asked me, “Mom is Sam feeling weak?” I said yes, he is a little and Andy ran downstairs and dug up a metal extension pole that we have in the closet for cobwebs and stuff and ran it upstairs so Sam could use it as a cane.  It just about killed me.
I am resolving to be captain fun regardless of the treatment. I have had a very short fuse lately for my poor kids and I’m going to get it together.
Please keep Sam in your thoughts and prayers.
Margot
Topics: Progress Reports | 23 Comments »
November 24th, 2009 at 12:36 am
praying lots!!!!
November 24th, 2009 at 12:44 am
always…always….always..thinking about Sam..
And you all……the little family that has fun no matter what…..
hoping for a great plan…..and lots and lots of great days!!!!!
love and prayers!!
rhonda
November 24th, 2009 at 12:52 am
Thanks for the round up. I don’t know anything about marrow disease, so I won’t chime in about treatment options. I will say, stick to you guns about fitting the fun in.
Vickie
November 24th, 2009 at 12:53 am
Prayers and good thoughts always…
November 24th, 2009 at 1:32 am
Marg’s
These tough times do breed the best in the brothers…Andy is such a great little man..this summer he was such a trooper swimming so well and looking after Charlie..
Sam is a warrior
Always thinking of Sam..
November 24th, 2009 at 2:01 am
Thank you for updating. I’ve been checking the site constantly waiting for news and praying that it would be good news. I’m so sorry to read about the marrow involvement but am confident that you and Neil are going to come up with a great plan.
I wish there was something we could do, anything we could do to help. All I can say is that I know how you feel. Please let us know how we can help – even if just a friendly fellow mom’s ear to scream to. Always praying!
With friendship and with hope,
Sarah and family
November 24th, 2009 at 2:43 am
With you guys always. Praying for you always. If I can help in any way do not hesitate to ask.
November 24th, 2009 at 3:08 am
Thank you for the update. I’m glad that the good news column seems as long as the not-so-hot news! So, no second MIBG, huh?
I’m looking forward to reading about your plan!
Bring on the fun!
Lara
November 24th, 2009 at 3:12 am
Always thinking about you guys and sending thoughts and prayers your way!
November 24th, 2009 at 3:58 am
Hi Margot and Neil,
I am always thinking of Sam and have been watching for an update. thank you. I know how hard it is to keep your thoughts together in this constant battle. i pray for good things for Sam everynight and sometimes throughout the day.
Lisa
November 24th, 2009 at 4:01 am
I was getting worried since you hadn’t posted, but then Nick told me he talked with Neil briefly this weekend… some good and some not so good news… that is better than all bad news, right?
LOVE the brotherly love shining through… Andy and Sam are such great buds ! Hope little Charlie feels better fast !
I am thankful for all of you in our life, even through the miles!
Many, many prayers every day… we will never stop !!!
May there be more fun and smiles on the horizon for Sam this holiday!
Also, be patient with yourself… you and Neil are doing a marvelous job navigating through this nightmare of disease !
Love and hugs,
Colleen
November 24th, 2009 at 4:40 am
Many times throughout the day, our thoughts and prayers turn to Sam and your family. Andy is just absolutely a wonderful brother. Hoping you have a great Thanksgiving filled with lots of family fun and of course good food. Always in our thoughts and prayers.
November 24th, 2009 at 5:10 am
Continuing to keep Sam and your whole amazing family in my thoughts and prayers…… Lots of love…
Julie MacDonald
November 24th, 2009 at 5:17 am
Thinking of you all sooo much…..praying as always. Happy Thanksgiving to the Hutchinsons from the McKean’s.
Luv,
Abra
P.S. Margot can you email some ideas for the boys xmas presents.
November 24th, 2009 at 2:46 pm
“Fortunately, my husband and our team of doctors and parent consultants have several out of the box options at the ready.” From what I have seen of Neil that is an understatement! I am sure he has analized every possible scenerio and I am sure he has all the best options. Thinking of you guys always.
November 24th, 2009 at 2:57 pm
Margot, I’m thinking about all of you and know you have the strength to be the “glue” for your family. Your boys are so lucky to have a fun (and wonderful) mom like you. Sending good thoughts your way.
Hallie
November 24th, 2009 at 3:23 pm
What a sweet both Andy is! Don’t they alwasys amaze you? Hope Charlie gets better and you do not all get it! Lots of Lysol!! Praying for Sam as always- Angela (Madison’s Mom)
November 24th, 2009 at 10:44 pm
This Thanksgiving, I will give thanks for Sam’s presence, stamina, and smiles. I continue to offer prayers for all of you to be energized with peace and joy. Blessings, Bev. :>)
November 25th, 2009 at 5:30 am
I cannot wait to see the boys on Thanksgiving. Despite the range of emotions and the ups and downs, we have lots to be thankful for as a family….Sam, Andy and Charley are incredible and they have wonderful parents! See you shortly….
November 25th, 2009 at 9:50 pm
You’re always in our thoughts here Margot. Hang tough. I hope you all have a wonderful Thanksgiving.
November 26th, 2009 at 1:18 pm
Hey Marg,
All of us Down UNder thinking of Sam and talking about you guys every day. Love Sam’s negotiating skills with the Diner and Andy looking after his big bro w/ the makeshift cane 🙂
Amazing that you are always pushing yourself to ‘lift your game’ as a Mom – I don’ think anyone who knows you ar reads Team Sam can imagine a better Mom in the Universe.
Lots of love,
The Maleys
November 27th, 2009 at 10:24 pm
You are all aways in my prayers. Eva
November 29th, 2009 at 4:29 am
Dear Marg & Neil, So glad to hear you had a fun Thanksgiving at your compound Marg&Neil! Spinach Madeline and all! what was it? 11 or 12
people? Pretysizeable number! Soglad you are still being”Captain Fun”;baking and making gingerbread houses with icing,gumdrops and all! How creative and how much fun! Hope matt finds an apt. very close to you in P.B. and that you will always have Hutchisons around helping you and Maleys too! Thanks for the hints on the boys xmas gifts! Can’t believe Charlie wants a snow board living in Calif! How about a boogie board? Lots of LOVE to you and your boys Marg, including the big one! You are a fabulous mother, wife,sister and daughter. Much Love,to Sam,Andy,Charlie,&to Neil,Matt&Joan;and heaps of Love to you Marg. Mom,
“Grandma Sara”