Day +25 A Very Good Day

Sam was discharged yesterday afternoon, and my mom and Jack flew up this morning!  I don't have a lot of words today.  Just taking it all in and enjoying life's blessings.  Sam is very, very tired, but oh so thankful to be back in his own bed, and not having his vitals checked every 4 hours.  Pictures and updates to come, I promise.

Day +21

Sam is doing great!  The steroids they put him on over the weekend really seemed to help calm his belly.  He had an upper and lower endoscopy done yesterday afternoon, and the preliminary results show all is clear up top, and mild inflammation in the lower GI tract.  We should have official results by the end of the week.  They will be tapering off his meds (including the steroids) and will begin transitioning some to pill form.  Still no definite discharge date, but they said if all continues to go well we may be out of here by the end of the week.  I know!  Can you believe it!?

Here's a recap of the past few days.

Restricted diet to help calm his belly.  Plain pasta and boiled potatoes.

Prepping for endoscopy. 

Back to his normal, low microbial diet.  An angel of a nurse slipped us a pediatric menu.  Yes, those are PB&J stars and chicken fingers.   

And a belgian waffle for breakfast.

taking down the pain pump!!

Day +18

Sam had more vomiting, intestinal issues and stomach cramping last night which convinced his doctors that this is most likely gvhd.  Because early detection and treatment can literally be a matter of life and death, I was relieved to hear they will start treatment today instead of waiting for Monday's tests.  Since his donor was a mismatched female who has had multiple pregnancies, he was at a much greater risk for this to happen.  So we'll start treatment today and continue to pray that he gets better.

In the meantime, we have some people to thank.  David and Laurel Maddox, thank you so much for your funny, thoughtful care package.  You certainly know Sam!  Dr. Lehtola, we can't tell you how much we love and appreciate the beautiful gifts.  If I had known you were such a talented seamstress, I would have solicited sewing lessons instead of goofing off all those years at Frazier Rogers.  Cody Welchons, the movies are perfect.  Thank you so much.  We love you!  A big thank you to Jeannette Bimonte and all of Sam's AGR brothers who helped create and distribute these cool gator wristbands to support Sam.  Cancer is GATOR BAIT!  Love it!

And a super huge thank you to Judy Graves!  Remember that storm that came through Vero Beach in early October?  It left our family room looking like this-

Well, over 6 months later and it still looks like this!  On top of everything going on up here, we've been trying to track down all responsible parties to get this fixed.  Not really sure why we pay so much money every year to Justine Rodgers Signature Insurance, but I suppose that's a topic for another day.  The fact that Sam can't be around any new construction for 3 months after transplant brings a new sense of urgency to the project.  If, after everything, our trip home was postponed because of this, things might get a little ugly.  Thank the lord, Judy Graves stepped in and after one brilliantly worded letter, our house will be fixed by the end of the month.  If you find yourself in a pickle, she's definitely the lawyer to call.  772-257-5079

Day +17

Sam is doing great.  His counts have been up and down, but apparently this is normal.  They've taken down a few other medications and again lowered the rate on his pain pump.  We've been doing exercises and walking laps, and he's continuing to eat like a champ.  The one downside is that he's having some intestinal issues and is needing to use the bathroom much more frequently.  His doctors aren't sure if this is just a side effect of the high dose chemo or the very beginning of gvhd.  He's scheduled to go in for some tests on Monday to find out.  If it is gvhd, it's treatable.  In fact, his doctor said a mild case isn't always a bad thing since it's likely attacking any residual lymphoma cells, and relapse rates tend to be lower for patients who've gone through it.  Hoping for gvhd?  No.  Just not as terrified as I've been.

Hospital life can get a little monotonous so it's always a pleasure when Kelli Powell stops by.  She's one of the music therapists here, and she's amazing.  Regardless of what's going on, she always gets Sam laughing and me crying (in a good way).  She had her ukulele with her today so I requested a special little song for Jack - something my grandmother would always sing to me.  Thanks Kelli!

 

 

Day +15

The ultrasound results came back negative for vod (fantastic!!), but did show his gallbladder was enlarged with several gallstones and "sludge".  They said this can happen when patients aren't eating (Sam hasn't eaten in over a week), and the TPN (liquid nutrition) he's been getting can actually make it worse.  His doctors weren't sure if it should be left alone, drained or removed altogether so they called up the surgical team for their opinion.  The thought of a possible surgery or having a drain placed in his stomach at this point was a bit much for Sam, and this morning was one of his lowest points through this whole cancer journey.  The surgical team finally got up here and told us they foresee this clearing up on it's own when he starts eating again and is taken off of the TPN.  To say he was thrilled would be an enormous understatement.  He ordered some chicken noodle soup and a grilled cheese sandwich and ate every bite.  Because he tolerated the food so well they're taking down the TPN tonight, and also lowering the basal rate of his pain pump.  Two big steps towards being sent home!     

Day +14

The good news is that Sam's wbc continues to go up.  2.8 today!  His neutrophils have finally come up too so he's no longer confined to his hospital room (though he still can't leave the floor).  The downside is that he's in a horrible amount of pain, and unable to enjoy his new freedom.  Yesterday was one of his worst days since transplant, and they've once again had to increase the base rate of his pain pump.  His doctors think it's veno-occlusive disease of the liver or VOD.  It would explain the crippling pain he's experiencing around his liver, the fluid retention, and newly elevated bilirubin levels.  This is a fairly common complication within the first 20 days, and thankfully, they have a treatment plan ready.

  

Day +13 Engraftment!!

It's official!  Sam's wbc has been increasing for the past three days, and his doctors are confident his new cells have started engrafting.  We didn't want to say anything until we knew for sure this time.

His doctors are sending up the infectious disease team since he's been spiking fevers and chilling for the past 5 days, and they're not sure why.  At this point he's feeling pretty darn miserable so the news this morning was perfect.  

Day +12

Sam's having a good morning.  He spiked a few fevers yesterday, but he's doing much better today.

My mom sent us some new pictures of Jack.  He's getting SO BIG!  And still not walking.  Fingers crossed he holds off until Sam's out of the hospital!

My Best Friend's Wedding

My best friend got married today!  Congratulations Victoria and Jason Burg!  We love you!

long distance bridesmaid

they skyped us in for the ceremony

the four of us at Christy & Brent's wedding, 1 month before Jack was born

 

 

 

 

at swamp, a lifetime ago

*In case you missed my update on Sam's white blood cell count.  The lab made a mistake.  It was still 0.1.  Not 0.7.  I'll be sure to make them triple check their numbers before we get too excited next time.  Thank you for the continued support.

Day +10 *update*

So apparently someone down in the lab this morning confused a 1 with a 7.  His WBC is still 0.1.  We were a little discouraged, but found ourselves feeling really bad for the poor nurse practitioner who had to tell us.

Thank you Atlantic Veterinary College class of 2015 for the awesome video!  Pretty hard to be bummed after watching that :)

 

Day +10

Great news this morning!  Sam's white blood cell count has jumped to 0.7!!  Thank you Lord!!  They're looking for this number to remain high for three days in a row to indicate official engraftment, but we're still really excited.  They switched his pain medication over to a constant basal rate last night since the button just wasn't getting the job done anymore.  Once his counts increase and stay up, many of those painful side effects will go away.  Keep those prayers, vibes and well wishes coming!

 
And a big congratulations to Dave and Jeanne Talbot!  They welcomed their beautiful daughter Charley into the world early this morning.  Such a good day.

Day +8

Another OK day!  His liver levels have finally plateaued with the lower drug doses, and hopefully they'll start to decrease over the next few days.  He will not be getting another round of stem cells like his doctors had hoped.  Apparently his donor had checked a box while filling out her forms that stated she did not want to be contacted about future donations so they weren't even able to ask her.  And that's OK.  She's already done so much for us.  He received the minimum baseline amount so that may mean engraftment might take a little longer.  But maybe not, who knows.  His doctors seem OK with this, so we are too.  He slept again for most of the day.  He's said he's never in his life been this tired. 

A few more fun deliveries!

a sweet and thoughtful gift bag from Val and Brian Kelly!

and a box from shutterfly with a deck of cards and a puzzle featuring photos from our wedding! thank you Leanne Dellibovi!!

Day +7

We had another uneventful day.  His white blood cell count is still 0.1.  Results from the ultrasound came back clear, but since his liver levels remain high the doctors have made further adjustments to his gvhd meds.  This initially made me very nervous.  In my non-medical mind I want him to get the strongest, fullest doses of any and every drug that could prevent gvhd.  But because his medical team took, in their words, an "all guns blazing" approach to Sam's transplant regimen there were bound to be some adjustments made along the way.  So this is where we put our trust in the doctors we've chosen.  Not always an easy thing to do, no matter how awesome they are.  And even though I have pictures up all around the room, I still have an overwhelming urge every morning when they make their rounds to remind them of our 1 year old back home who very much needs us both.

Sam slept for most of the day.  Day +7 through +11 are supposedly the worst, though Sam's doctors told him he was the best Day +7 they'd ever seen.  After that he humored me with a few exercises and even put together a little lego model.

Thank you for all of the continued love, support, prayers and thoughtful care packages.  We love reading your words, and the staff here is blown away by all of our supporters.  Toccoa Graves- that box was insane!!  Thank you so much!

Sam's project for the day...

which he finished in 5 minutes :)

 

Day +6

Sam's liver counts have been elevated for the past few days so his doctors have been keeping a close watch and trying to bring them down by adjusting some of his meds.  They sent him down for an ultrasound this afternoon so we should have some answers by tomorrow.  

Other than that, things have been pretty uneventful since the night of the transplant.  He's just dealing with the after effects of all of that radiation and chemo and, of course, the exhaustion of his body rebooting itself.  He has all sorts of crumby side effects, but thankfully, with the help of some very powerful drugs, he doesn't have to fully experience them.  They monitor his blood counts daily.  Hopefully those new cells are busy setting up permanent residence in Sam's bone marrow.  This phase, called "engraftment", will likely start 2-4 weeks after transplant, and is signified by a white blood cell count of 0.4 K/mcL.    

Here are his counts so far.

Day +5

Sam's having an OK day.  His mouth pain is getting worse (completely normal and expected) so he's finally made peace with his pain button.  We got to spend part of the day with Jack and the rest of our families back in Florida via Skype.  It's been so hard not having Jack here with us.  Actually some days it's nearly unbearable.  I know he's more than fine with my mom, and it makes me so happy to think of him out in the beautiful weather enjoying the beach or the park.  But I'd be lying if I said it didn't break my heart to not have him with me.  Obviously, things are pretty intense here and Sam is my priority.  We're a team, and we're going to get through this together.  It's just a very strange feeling to have your child so far away.

Hope you all are having a wonderful holiday weekend.  Tomorrow starts Week 3 for us!

Jack, 1 year ago today

Day +3

Sam had a good day today.

they added a patient controlled pump for his pain meds- now if we could just convince him to push the damn button

getting pretty crowded up there

we finished a puzzle today

our sweet care package from the Hathaways- thanks Robyn and Doug!!

Day +2

Sam's having an OK day.  We got some morning exercises in, but for the most part he's been in bed resting. 

they decided to hang some liquid nutrition.

big thanks to the Waldens, Charlotte and the Starrs for all of the fantastic dvds!! 

Day +1 Morning

Sam is doing much better this morning!!  His doctors came in as he was eating a cheese omelette and they were completely blown away.  They really just stood there and stared at him for a bit.  And, of course, you know Sam- "So how are ya'll this mornin'?" 

His blood counts have completely bottomed out (this is actually a good thing) so he won't be leaving his room for a while.  We got in some exercises and he peddled for a bit on his bike.  He'll be getting some blood and platelets later on.  Thank you so very much for all of the love. 

Transplant Day 0 Stem Cell Transplant Video

Finally!  The day we've been praying for.  It started off rough.  He woke up covered in hives, started vomiting and spiked a fever, but by noon things had calmed down and he was able to get some rest.  They waited until 5pm to start the transplant and by then he was feeling a little better.  The process itself wasn't incredibly exciting, but I recorded it anyway for friends and family who couldn't be with us.  

As it turns out, they didn't receive the quantity of stem cells they were hoping for so they're going to see if the donor would mind giving just one more round.  It would be the perfect amount for an average size person, but obviously, Sam's not your average bear.

   
A few hours later all hell broke loose, and Sam was bombarded with every side effect they had warned us about earlier in the day.  Nurses and doctors are in and out, and I've never in my life felt so useless.  Please keep Sam in your thoughts and prayers tonight.  He's the strongest man I know, but this is some rough stuff.  

On tonight's soundtrack: The Weary Kind, Ryan Bingham   

Transplant Day -1

Refer to my last post.  The same exact thing happened.  More equine ATG, more hives, more Benadryl.  The day ended well though.  Looking forward to tomorrow!

Transplant Day -2

Sam received an infusion of equine ATG (anti-thymocyte globulin) today.  This is basically a horse-derived serum that will suppress his immune system and create a friendly environment for his new stem cells.  It comes with a long list of side effects, but he slept through most of it thanks to some good drugs.  They just had to pause the infusion after 9 hours because he broke out in hives.  They're running some Benadryl and hopefully he'll be finished before midnight.

the equine ATG came in a cool glass bottle

hives!  they were everywhere!