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 +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 +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 +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!

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.

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.

Sam's Birthday Video

In case some of you missed it, Amelia Graves and Charlotte Tripson put together an amazing little birthday video for Sam.  Thank you so much to everyone who helped make it so special.  It was a fantastic surprise!!  Click here to watch.

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.

Welcome!

Hello everyone and welcome to our blog!  Many of you have called and emailed checking in for updates on Sam and Jack so we thought this would be an easy way of keeping our friends and family in the loop.  We'll try to update as often as we can, and we look forward to hearing from all of you!

Just to catch everyone up...

Sam was officially diagnosed with Nodular Lymphatic Predominant Hodgkin's Lymphoma on February 24 at Moffitt Cancer Center in Tampa, FL.  We became concerned when just a month earlier he found a swollen lymph node on his right side under his arm.  After several tests, CT scans and one very painful bone marrow biopsy the specialists at Moffitt came up with a diagnosis and an aggressive treatment plan.  We were cautioned that chemo would be tough, but the prognosis was good and he could get his treatment right here in Vero.  We left Tampa that day feeling a bit scared and overwhelmed, but very hopeful.

Two hours after returning home that night my water broke, and Jack was born 3 weeks early on February 25.  It was a great delivery and he was born healthy and perfect, though quite small.  He may, in fact, be the smallest Tripson ever weighing in at just 5 lbs 15ounces!

Some days can be awfully tough and we're long overdue for some real fun, but we thank God every day for having each other and for blessing us with the most beautiful baby in the world.