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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:Â http://www.superryan.blogspot.com/
Margot
Topics: Progress Reports | 12 Comments »
July 10th, 2009 at 1:20 pm
So glad to hear that Sam has perked up again!!! Wish the scan would have been more to your liking.
Here’s praying that the next treatment gives it the knock out punch.
When you guys get back-we’ll all have to do a day at Seaworld-Mac & Ty love Atlantis!
July 10th, 2009 at 1:33 pm
Good call on basketball tomorrow.
I can’t believe Charlie is about to clear four fett. I think Erin only got to four six and she was shot for a sixth grader, but taller by a lot than any preschoolers we know.
I’m curious which direction you will go next.
VB
July 10th, 2009 at 1:51 pm
We love to get updates! Glad Sam is feeling better. You and Neil do such a great job trying to balance out all the needs of your children. They are so lucky to have you. Hope Sam has a great Bday! SO sad about Ryan’s family. Angela (Madison’s Mom)
July 10th, 2009 at 2:46 pm
YEA on basketball saturday! Its what matters.. and Sam Smiling, well… that matters most! Love you guys!
July 10th, 2009 at 3:26 pm
Andy gets more and more interesting to me every time you write about him! I think he might be meant to live on the East Coast! Wicked. Now if he starts dropping his “r”s you’ll be in trouble.
July 10th, 2009 at 4:20 pm
Sorry that things weren’t exactly wonderful with the scans…..but so happy to hear that Sam has perked up and had a fun day. I’m so glad that he will get to play in his bball game on Sat. We will be praying here in Wa for you all as always.
With Hope
Abra
July 11th, 2009 at 12:50 am
I hope your trip East brings what you are looking for. The more smart heads working for Sam the better. If Andy ever comes to Boston we will have him talking like a pro soon enough with the wickeds. Hold the f-bombs tho hopefully:) as they like those around here paired up with wicked.
It sounds like you’ve had a long few weeks and I hope Sam’s birthday is a great day. Hang tough as I know you are.
July 11th, 2009 at 1:25 am
So sorry to hear about the Ryan family..mom and son..
It is hard to get your mind around a loss like this..how can this occur?
Why?
But for Sam, tomorrow is the birthday party and 9.
Last year Margs prayed for 8’s and got it…life on top of the combo of pain and suffering that Sam endures.
Thinking good things for Philly and NY and I hope that Sam qualifies for the trials that matter..
July 11th, 2009 at 2:35 pm
Dear Marg and Sam, Have a wonderful,Happy 9th birthday party today! Have fun at basketball too, but, don’t wear youself out before the big party! I remember it from last year and it seems there was a lot of running and chasing other teams, in the dark with lazer swords? What fun for you; you must have had a good time, because Joe had his party there and you’re having your second one!Have a Happy happy day! Much Love “Grandma Sara & Mom”
July 11th, 2009 at 11:07 pm
Even though we do not know you other than what you write here, we keep you in our thoughts each and every day. Your family is amazing and we have complete faith that there was all of 8, and now there will be all of nine, and ten, and eleven…… You are in our thoughts and our prayers every day. As a confirmed “Jersy Girl” wicked is one word I use daily! I am looking forward to reading about Sam’s party! I bet it was wicked cool. I can’t offer anything more than good thoughts and prayers, so know all of that is being sent your way.
July 13th, 2009 at 1:09 am
So sorry to hear about Super Ryan and his mom. Sad day. Take care of Yourselves! Angela (Madison’s Mom)
July 13th, 2009 at 2:18 am
Sending birthday wishes for Sam and good thoughts your way. Hope that this trip is the one that does the trick. I know my birthday wish for Sam joins yours and everyone else’s. It’s all the little things you write about your family that give life meaning…. Jan