Thursday, August 20, 2009

The Last Half of Summer

Brielle on "Red"! She looks so tiny!



Emma learning how to "lead" Red
A friend of mine invited the girls over to ride her horse, Red. They got to brush, feed, and bathe him, too! They were in heaven!

The girls at the Davis County Fair's petting farm


Riding the ponies at the Davis County Fair. Worth the 45 min wait!

My pretty girls in front of the Oquirrh Mountain Temple

it was a little windy, but we still had fun
What else screams summer like Popsicles and Snowie's?
Lagoon! We truly enjoyed our season passes this year!


Emma favorite ride this year was "The Bat" so we took a picture in front of their cage! (You can see their red eyes when it's enlarged).


One thing I learned from Nick's last hospital stay was that my kids were totally thrown off with both of us gone. I know we tried to make the best of the situation and we were very blessed to have so many family members and friends willing to take care of them for about two weeks while Nick was so critical. But once I came home, it became harder to drop Brielle off in nursery or at her baby sitter's. She was very clingy for at least a month. Emma was busy finishing the year with preschool and dance, but I know she was worried that one day she would wake up and we would be gone again. She was very leery anytime Nick had a doctor's appointment or I was going to the hospital by myself.
So, with Nick's most recent stay in the hospital, I tried to be at home with the girls as much as possible. It helped that Nick was not as "critical" and his family was very willing to stay overnight with him. I'd like to think that the girls were less affected this time. We tried to keep doing the fun things that we already had planned even though Nick couldn't be there. Here are a few things we did that I actually had my camera for!

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!