Day +101 More Good News

We just met with Dr. Sauter. By this time next week, we will be home!! We have an appointment at Moffitt for follow-up care on the 25th, and we may have to temporarily relocate to Tampa for a short while, but if that's the deal, we'll take it. We are beyond excited to finally be coming home.

Day +80

Remission!

Finally!

Praise God!

 

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.