Tuesday, August 18, 2009

Detour

So we were riding along on Nick's road of recovery last month (and we were bragging about how things were getting back to normal) when we hit a DETOUR!! I had spent the night in Park City with my girlfriends when I get a call early Saturday morning that Nick has a fever of 102*. We knew this could mean rejection or infection so we took him to the ER. The doctor's tested for things like blood clots, pneumonia, or blockages to his liver. Every thing came back negative. They drained a liter of fluid from his lungs. They placed a drain in his abdomen to drain off any residual fluid that might have gotten infected. They did another liver biopsy (#3). They did another bone marrow biopsy (#3)! Then, his transplant doctor's started telling us about a rare (2%) post-transplant disease that could affect his lymphatic system.

Post-Transplant Lymphoproliferative Disease (PTLD): a wide spread spectrum of viral disorders associated with the Epstein Barr Virus that may range from a self-limiting mononucleosis ("mono") to a type of lymphoma. PTLD is a complication of a suppressed immune system.

From the liver biopsy they could tell that Nick had PTLD. They moved him to Huntsman Cancer Institute for a PET scan of his whole body. Later that night, they came up and told Nick they had found lymphoma in four different places! We were shocked and devastated. How could this be when he was doing so well? He had almost gained back all of this weight and had talked about going back to work the next week. We were very discouraged. They started chemotherapy immediately. Even though they told us that lymphoma is a very curable cancer to treat, they admitted that they don't see a lot of transplant patients to compare him to. His treatment was going to be very individualized. Their plan was to administer chemotherapy every 2 weeks for a total of 6 treatments. After 4 treatments, they would do a CAT scan to see what progress had been made. So, Nick stayed at Huntsman for 5 days after his first round of chemo. He endured it really well. He has had no nausea or vomiting. Overall, he just feels very "worn out". He has had some muscle soreness, but that is a side effect from a shot thats given to build up his white count. He has yet to lose any hair (although it sounds like that will happen.) He had another round of chemo last week which went really well again. After his first round, the doctor's were "extremely happy" with how much improvement they saw on his blood work. They have been very encouraging and caring.

So, we are ending the summer with a *bang*...... just like we started summer with a *bang*! We are very thankful for the two months that Nick had to gain his strength back. I know that has helped him in going through this new trial. We are grateful for all of our family and friends that have been willing to help us with babysitting, doctor appointments, dinners, and their overall concern for Nick and our family. I still feel strongly that everything will work out and Nick will able to regain his health and overcome this new diagnosis. He is an amazing man! He is working hard to fight this and move on! His body has been through so much this year, but we have also been blessed in numerous ways. We will continue pressing on!

4 comments:

Jylaire said...

Rachael! How on earth are you dealing with all of this? I can't even imagine! We're planning on attending the 5K in a couple of weeks. Please let me know what else we can do to help. ANYTHING! We're keeping you guys in our prayers!

Stacie said...

We've been thinking about you guys and praying for you.

The Tracys said...

You put things so clearly Rach. Everything always makes more sense when I hear it in your words. You are always so strong. So is Nick. I am glad you have been able to stay so optimistic over the past 9 months. You are inspiring! I don't know how you've handled everything so well. I truly look up to you. I am so thankful Nick has you! We're always here if you need anything at all! We love you guys!

The Boyles said...

Rachael,

You are stellar. What a Rock for Nick, I'm so glad to hear it from you, it sounds much better. We will try to attend your 5K in a few weeks... anything we can do to support!

-K