Day +365!!

Wednesday, April 3 marked one whole year since Sam's stem cell transplant at Memorial Sloan-Kettering. Though our vision for the day (relaxing somewhere beautiful with Jack) and the reality of the day (long and grueling with plenty of pokes and prods) could not have been further off, it's A-OK because we just got the news that everything looks GREAT and Sam continues to be disease free!! And...as if that wasn't enough. We were also given the paperwork that will put us in contact with our donor! The National Marrow Donor Program prohibits donors and recipients from meeting until at least a year post-transplant. We are beyond excited to have the chance to personally thank the woman who's done so much for our family. And thank you ALL for supporting us every step of the way.

Remember this? What a difference a year can make.

Day +76 Moving Forward.

We spent the majority of last week sorting through the apartment. Pack? Donate? Toss? We made our way through seven months of stuff. It was far more emotional than I ever imagined. The cake pan used to bake Jack's first birthday cake? Pack. That winter coat that kept him toasty in Central Park all winter? Donate. reluctantly. A small forgotten bag of breast milk in the freezer? Deep breath. The last ever? Toss? God give me strength. It went on like this for several days. A necessary downsizing and reorganizing of our temporary city home. We had been putting it off for too long. Each delay in our departure date would lead Andy and Alison,our NYC angels, to cancel potential renters. Renters who write checks for a 4 day stay that equal 5 months of mortgage payments back home. Their compassion and kindness is extraordinary, but we couldn't keep letting them do this. It's just the two of us now, and tying up such an expansive space seemed silly. There were whole rooms we no longer ventured into.

Besides, we really don't know how long we're going to be here. Sam's counts haven't rebounded like they should have since his last hospital stay. They've talked about possibly giving another dose of donor cells. From the same donor or wait for a new one? We're not sure. It's out of our hands. The endless worrying, grasping for control, and yearning to be home with Jack have left me exhausted and miserable. My prayers have changed. When I hear a new departure date of sometime after the 4th, I breath in. I give thanks. Thanks for my worn, but still breathing husband sitting next to me. Thanks for the highly skilled and very cautious medical team keeping him that way. Giving thanks keeps me present. Giving thanks keeps me grounded. Giving thanks keeps my hands from lunging at the doctor's neck.

Sam has a PET scan scheduled for Wednesday. Until then we're settling into our new home across town at Hope Lodge. It's a different world over here. Definitely not the upper east side :) More posts to come.

Day +69 Out of the Hospital!

Sam has finally been released from the hospital. Leaving the floor, he caused quite a stir since it's a rare occurrence for a patient to be directly discharged from the ICU.  He's feeling much better and we'll be spending the week prepping and packing for our move across town to Hope Lodge. We are excited since it's one more step towards home.

Please keep the Lindsey family in your prayers as Lynn undergoes surgery this week for a rare and aggressive type of breast cancer. Like so many of you, they are an incredible family who have been our champions from the very beginning. Though we're saddened by the news, we have no doubt Lynn will come through this journey with a clearer mind and stronger body. Many prayers for healing and peace.

Day 5 in the ICU

Sam's new PICC line (Peripherally Inserted Central Catheter)

Two of the many IVs they had going. No fun at all.

Day +64

Sam is still in the hospital, but he's feeling much better. No more fevers, his blood pressure is stable, and he's eating and drinking again like a champ. He's the youngest, healthiest patient the ICU team has seen in a long time. We continue to wait for a transfer to another floor, but it's not looking very promising since the whole hospital seems to be full. Our trip back home is going to have to be postponed since they want to monitor him a little while longer, and have him complete at least 2 more weeks of antibiotics. I know it's just a few more weeks, but being so far from Jack, it feels like they said a few more years. It's most definitely an exercise in faith and patience. When I really start feeling sorry for myself I go sit in the ICU waiting room with families who won't be taking their loved ones home with them. Kind of puts everything back into perspective. We'll be moving over to Hope Lodge on the 15th which should be a new adventure. Keep you posted.

a few favorites from last year...

Day +62 Back in the Hospital

Sam woke up early Sunday morning with a high fever and chills. He had an infection that made its way into his bloodstream which caused him to be very sick. He spent the night in ICU where they took out his port (a possible source of infection), put in a new temporary line and gave him broad coverage antibiotics. Actually, they did all sorts of things to him, but those were the main things I remember.  The ICU is by far the strictest place in this hospital and I kept getting booted from the room.  He made a complete turn around during the night and is feeling much better today. They're even talking about transferring him off the floor so hopefully we'll be discharged within the next few days.

We're Still Here!

Hey ya'll. It's Sam.

I want to first say that I'm not sure I could have done any of this without my wife by my side.  She is a rock, and it's impossible to thank her enough.  And to my mother-in-law who thought she'd escaped the treacherous north 22 years ago. I know many men complain about their mother-in-laws, but I am truly blessed. And, of course, my son. Everyone always says they don't know how Kristen and I managed between my treatments and raising Jack, but we say thank God we have him! He's a constant reminder of what's really important in life. 

I know it's been awhile since the last post, but don't be alarmed. We are surviving with lots of love and medication.  I was released from the hospital on April 27th, and the adjustment back to home life was much more difficult than I had imagined.  I became so dependent on the nurses and doctors and I became anxious about leaving when I realized the care would now be placed solely on my family and myself.  It is definitely different living at home and having so many restrictions. Wearing a mask really bugs me. I know it sounds funny but just being able to walk around is hard enough, and then this embarrassing mask that makes you look like a SARS patient. But I know it keeps the construction dust and germs out of my lungs. Then there's the food restrictions. Everything has to be cooked, no fresh vegetables and hard to wash fruit (berries, cantaloupe, and such). And no restaurants for the 1st 100 days post-transplant. It's impossible to trust strangers to handle your food when you have no immune system. Anything I eat is cooked by myself or my wife. Let's be honest, mainly my wife. But, of course, I know these are minor things, and I am truly happy to be alive. But I thought they were worth mentioning, especially if anyone stumbles across this blog whose going through the same thing. I think it's normal to feel anxious and frustrated when you've been through so much and you're so close to the end.

I am happy to say that I do feel better everyday.  It was quite an experience with the transplant, and April 3rd (day of transplant) is a day I will never forget. Some say it's my new birthday, but having recently witnessed the miracle that is childbirth, I don't feel quite right taking that honor away from my mother. But there's no doubt, I have been given a second chance, and I am not going to waste this opportunity. I'm inspired more than ever to be a better husband, a better father, and a better man. When I started this adventure I weighed 298 lbs. As of today, I am 238 lbs. Of course, I do wish I lost it under different circumstances, but I must admit, the chemo/transplant diet sure does get the job done!  I lost a lot of my muscle mass while in the hospital and I've been gradually trying to build it back.  I know it will take some time.  I am also pleased to say that we will be moving back to Florida soon! Probably by the 2nd week in June.  There is a great transplant doctor at Moffitt in Tampa who completed his fellowship at Sloan Kettering and knows my doctor well. My wife has been lobbying to get me transferred south for follow up care since before I was even admitted so it seems her persistence has finally paid off.  If you can believe it, they still haven't confirmed that I'm in remission since I still had signs of disease going into transplant. I have a PET scan scheduled for June 4th and I pray we'll finally be able to hear those words.

Well, I guess that's all I have for now. Thank you so much for the continued love and support you all have shown to me and my family.

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 +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 +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!!

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.

Home

Sam went in for his third round of Augmented ICE on Tuesday afternoon, and was released last night around midnight.  Everything went very well.  He's been pretty tired all day, but we were able to get out for a short walk.  He has another scan scheduled for February 1.  Until then we're just here, hanging out.  Like many of you, we have given our pantry and fridge a complete overhaul.  Stay tuned for some healthy, feel good recipes.

And thanks again to everyone who made my birthday so special, especially Alison and Andy Brettschneider.  I've been telling Sam for years that I wanted to spend my 30th in NYC.  The lengths he'll go to keep me happy...

Here are a few pictures from the day.   

Hospital Life

Sam's doing better today, and there's talk of him being released tomorrow.  His appetite is back and his platelet and hemoglobin counts are up.  Fingers crossed for no more nose bleeds or fevers!  Our thoughts are with the Soud and Morton families back in Florida tonight.  Lori was in a terrible car accident and is in the ICU at Shands.  Many, many prayers for healing and strength! 

Here we go

We scheduled an early appointment with Dr. Matasar this morning to discuss our game plan before our flight home. The doctor was very concerned by the results of the pet scan, and squeezed Sam in for another lymph node biopsy this afternoon since the last one was inconclusive. It doesn't look like we'll be coming home any time soon, and if all goes as planned we'll be spending Thanksgiving in the hospital. This has been an exhausting trip for Sam, much different from our last trip to the city. He hasn't been able to walk around at all, and I have to force him to eat. They were hesitant to even do the biopsy since he's running a fever of 103.8, but thought postponing it would be worse. He's in very good spirits though and continues to charm his way through the nursing staff. These nurses up here get quite a kick out of his size and accent. I'm sitting right outside his door as I type this and can hear he's got them giggling. Lord only knows what he's saying since he's slightly sedated. He most definitely is his father's son.

We are absolutely heart sick that we'll be missing not only the benefit, but Jack and Carrie's wedding as well. Sam wanted me to let everyone know that he sends his love and can't wait to catch up with everyone when he's better. And a big thanks to Amanda Nettboy for letting us stay in her super sweet East Village apartment. It's so comforting to be surrounded by books, gator stuff and baking supplies. just like home. only much more organized. Thank you! you saved us a bundle.