May 3, 2013

Well friends we’re mostly through day one, round one.  Sorry this is such a long post, but my phone’s been blowing up with folks wanting to know what is happening.  I’ll do my best to explain it.  It’s about 1130pm, Garrett and Jessi have both finally fallen asleep; Him in his hospital bed and Jessi in the recliner next to him.  She won’t leave his side.  Kathy is sleeping in a family sleep room across the hall and I now have a few quiet moments to jot a note or two. It's been a long several days, fighting the good fight.

Today was like drinking from a fire hose.  We got up at 0530 and headed to Denver.  Because of the storm, we got stuck in the parking lot called I-25.  When we finally made it to Children’s, we met with his transplant team and they told us what we are up against.  In 2010 when Garrett was admitted because he got sick from a very nasty rejection episode, our backs were against the wall.  We learned things about  B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humeral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocytes, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppressant, chemotherapy, plasmapheresis......................the list goes on and on.  He was very sick.  We took a particularly aggressive approach to fighting the rejection and he got sick from the treatments.  Since then things have changed and we’re hopeful this time will be easier.

We had to go into the O.R. today to surgically implant picc lines.   A PICC (peripherally inserted central catheter) is a real long tube that goes directly into his heart.  Last time they had to be put in his neck.  Since then they’ve found that using the veins in the upper arms on older kids works better.  Because Garrett’s active and has been doing lots of pushups, his veins are big and open so it was a slam dunk.  He was extremely scared, though, and so they made an exception to the rule of the operating room and suited me up.  Because they did not use a general anesthetic, Garrett was awake.  His anxiety level was high, but he wanted me in there.  We’ve practice our ‘tactical breathing’ for years and today I was his coach.  He looked up at me and we talked our way through good breathing exercises while they put the lines in under a local.  It worked well and they were able to get both of them in easily.  The whole process only took about an hour.

Right now Garrett’s one hour into a six hour infusion treatment with IVIG.  He’s already had one round of photopheresis, which is similar to the plasmapheresis treatments three years ago when he had the last severe rejection issue.  It’s similar to dialysis and is basically a high-tech oil change that uses UV rays to bombard the lymphocytes.  That takes about three to four hours per treatment, then a two hour infusion of a steroid treatment, followed by the IVIG.  The IVIG blocks the antibody receptors on immune cells, leading to decreased damage by these cells. 

All of this is focused on T cell lymphocytes.  They’re a type of white blood cell.  We all have them but in Garrett’s case, he’s got a band of nasty little Al-Qaeda cells (that’s what he and I call them) and they’re trying to kill his heart.  The treatments are a form of chemo therapy designed for T cell lymphoma patients, but they’ve found it works to help heart transplant recipients fight rejection when they’re T cell driven.  Aside from a nasty little rash that broke out earlier tonight and has since dissipated, he’s comfortable.

The good news is that Garrett’s PRA (Panel Reactive Antibody) numbers are lower than three years ago.  That’s good!  A high PRA can cause immediate rejection of a transplanted heart, in spite of powerful anti-rejection medications available right now.  Last time we were fighting a high PRA and a zero reactive T cell score.  This time we’re fighting a lower PRA, with a higher T cell score.  Basically, he has an acute rejection caused by bad lymphocytes.  Follow so far?  Me neither.

He’s got to go through about 6 weeks of this.  In July, he’ll have another biopsy surgery to determine how successful we’ve been.  The emotional roller coaster ride has been pretty tough but he’s a remarkable young man who does not have an ounce of quit in him.  I wish we weren’t here right now, but feeling sorry for ourselves isn’t going to make it go away. 

Garrett’s pretty upset that his baseball season has been interrupted again, but he’s keeping a positive attitude and I’m proud of him. He constantly thinks about his cousins Levi and Noah and his Uncle Doug....they help motivate him to stay strong.  But taking baseball was a pretty hard blow.  He loves his sport so much and now can’t play for at least a couple of months, if all goes well.  By then his current league will be done, so hopefully he can get picked up by a summer club.  They’re more expensive but I think he’s earned it, don’t you?

All of these challenges we all face have glimmers of hope behind them if we look hard enough.  One email I received today reminded me of the beautiful passage in Romans Chapter 5.  It reminds us that there is glory in our suffering because we know that suffering produces perseverance; in perseverance, character; and in character, hope.  Hope is that magical term that gives us great expectations of wonderful days ahead.

We look so forward to those wonderful days ahead. Your support and prayers help more than we can express, and I'm very grateful.   We will never give up the fight.

God bless you all,

JD