Transplant Day -8

Today went great.  Sam had a Hickman Line placed early this morning.  This is an intravenous device that will be used to give medications, fluids, blood transfusions and his new stem cells.  It was a relatively quick procedure, and he was settled into his new room by early afternoon.  Here's his new address for at least the next 3 weeks if you'd like to write:

Memorial Sloan-Kettering Hospital
attn: Sam Tripson, room 815
1275 York Ave
NY, NY 10065

Sam will be getting 3 rounds of high dose radiation every day for the next 4 days.  After that he'll have one last big dose of chemo along with some drugs to help suppress his immune system.  All of this will be leading up to the day he actually gets his infusion of new stem cells, Day 0.  I'll try to keep you all updated as best I can.  Thank you for all of the prayers and well wishes.

Sam's new Hickman Line

Thankfully they found a longer bed.

    

Trip Back Home

We were able to travel back home to Florida last week and it was amazing!  We promised the doctors we would lay low and not be around big crowds so we didn't tell anyone we were coming.  We're bummed we missed some of our most favorite people, but it was wonderful to be back.  I don't think either of us has ever appreciated our house, our little backyard or the insanely bright Florida sunshine so much.  And to have Jack back in his own room brought tears to my eyes.  It was all so incredibly normal- the perfect break before transplant. 

The Pitmans heard rumors of our return and surprised us with a visit.  I tried to get some pictures of their adorable baby Lee...

but someone didn't want to share the spotlight

 

We're going to transplant...for real this time!!

We just got word that they've scheduled Sam to be admitted for transplant on March 26!  This is very exciting news.  As it turns out, all three of his perfect matches ended up backing out for one reason or another.  The good news is that we still have a donor, and though she may be a partial match (9 out of 10), we hear she's very excited about the whole process and has been wanting to donate from the very beginning of the search.  Because we're moving forward with a partial match, his team has tweaked their strategy, modifying their drug choices and now being super cautious and conservative with their graft-versus-host prevention plan.  They keep reminding us that his previous treatments have been the playoffs and we're about to go to the Super Bowl.  We say bring it! 

Hospital Life

Sam just got home from his 15th round of chemo.  His doctors decided to do one more round to keep the cancer at bay while they work on prepping the next donor for transplant.  Since the risk of developing leukemia was far too high with another round of Augmented ICE, they decided to go instead with one big dose of cytarabine (Ara-C).  Aside from being assigned the worst room in the hospital, everything went well and we're so very happy to be back in our apartment.

Waiting 5 hours to be admitted

Getting hooked up to chemo

I try to negotiate our stays to include a Thursday night since that means blackjack in the Rec Room.  Competition can be fierce, but only patients can win prizes.  I have to remind myself that these people have life threatening diseases when they hit on 17 and split their 10's.  Here's a picture of this week's champ!  

Walking the halls.  All patients (if they're able) are encouraged to get out of bed and walk around.

The Patient and Visitor Pantry.  Free water, coffee and juice.  There's one on every floor.

And, just a side note about Jack's birthday pictures from my last post.  They were adorable pictures, but, I have to admit, wildly misleading.  I baked him a little white buttermilk cake with vanilla bean frosting.  Anyone who knows me knows that my whole heart, soul and being was baked into that cake. So, you can imagine my distress when the little stinker didn't even take a bite!  I know, he sure hammed it up for the camera, but aside from a slight lick of frosting, he didn't even try it.  He ended up eating a diced up sweet potato and a hard boiled egg for dinner.  On his 1st birthday!  And yes, I'm still heartsick.  

Happy Birthday Jack!

Our beautiful baby boy turned 1 today.  We had a fantastic lunch at Peter Luger's.  Thank you, Rob and Kevin, for coming out to Brooklyn to help us celebrate, and to all of our friends and family who sent up the wonderful gifts.

It's hard to believe it's already been a year.  I can remember all of the awful, amazing, terrible, beautiful details like it was yesterday.  Only Lord knows what this year will bring for our family.  Thinking about it too much makes me a little panicky, and it's been a bit of an emotional weekend to begin with.  But what I do know for sure is that this was a great day.

 

  

  

 

Slight Change of Plans...

We found out this afternoon that our donor has backed out.  Apparently this happens a lot.  The transplant has been put on hold for at least another month.  In the meantime, Sam will be going in for another round of chemo next week to keep the cancer at bay while they try to line up another donor.  Thankfully, we still have donors to work with.

We're disappointed, but we're not going to let it ruin our weekend.  We have a very special birthday to celebrate tomorrow!

We're Going to Transplant!!

That's right!  Sam's doctors are very pleased with his last PET scan, and are recommending we move forward with transplant.  He's not in complete remission, but he's about 80% there, and his entire medical team is in agreement that now is the time to act before the lymphoma has a chance to start growing again.  Things are still going well with our donor.  Please, please continue to pray for her over the next week as she rearranges her life for a complete stranger.

Starting next week, Sam will be given 11 rounds of full body radiation followed by one last whopping dose of chemo.  The plan is to eradicate every last cancer cell before rebooting his body back up with the donor's new immune system.  As a reminder, Sam will be receiving stem cells that have been extracted from the donor's blood.  Embryonic stem cells will not be used at any time during the transplant.  There is an outrageously long list of potential side effects and a survival rate of 40%, but that's not where our focus is.  We know the threat of graft-versus-host disease is very real, but his doctors will be taking every precaution to prevent it, and if it does occur they have many methods of treating it.

And yes.  Of course we're scared.  This is the part where we take a deep breath and put our faith in Sam's medical team and trust in God's plan for our lives.

Here we are, exactly one year ago today, a few hours after Sam was officially diagnosed.