Tuesday, May 29, 2012

Cocktails and Remission

First of all, Happy Memorial Day to everybody.  It was a beautiful weekend and I hope everybody got to spend it with family and friends, but, most of all, we should all take time to remember the heroism of those soldiers who were never able to come home.  We owe them a debt of gratitude that can never live up to their sacrifices.  Thank you to all who serve and have served in the armed forces.

So, I will start with some great news.  On Friday, Dr. Broome let us know that the chemo worked amazingly and that my cancer is back in remission....where it belongs.  This was a piece of great news because it was a fear that I would never be able to return to remission.  When leukemia relapses after an initial remission, it is much more difficult to get into a second remission because the leukemia cells develop immunities to the chemo and are often difficult to kill.  So, the first round of chemo worked and my cancer is officially gone and out of my system.  The unfortunate thing is that there is an extreme likelihood that since I relapsed once, I would relapse again without further treatment.  This is why they can't just let me go even though all the cancer is gone.  The best bet for a long term cure is a bone marrow transplant.  The remission was critical, though, because a transplant will not be successful unless the leukemia is in remission.  This means that we can finally look toward the next big step, which is getting the transplant at the Fred Hutchinson Center in  Seattle.....I have already broken out my 1995 Pearl Jam/Nirvana mix tape in preparation!  The transplant center should be contacting us this week to set up a consult in the near future where Hanna and I will fly out  and make a plan for this 100 day process. I will likely receive another round of chemo here at Georgetown to make sure I stay in remission while the Seattle people find a donor and set things up.  The news of achieving this remission was a fantastic way to start the weekend and was the best we could have hoped for after only one round of chemo.

On another happy note, four of our amazing friends organized a happy hour fundraiser to help Hanna and I with many of the extra bills and expenses that this ordeal has brought.  Justin, Alison, Trisha, and Jodi went way beyond expectations with Cocktails for a Cause.  It was a happy hour at a local bar where so many of our family and friends were able to gather and support us financially, emotionally, and just with good company.  It was overwhelming and inspiring to be surrounded by such love and goodness and we cannot begin to thank the  four of them and everybody else who attended or supported the event.  It was yet another reminder of our extreme blessings and the strength that time with loved ones provides. 

Hanna and I were also able to make it home to Pennsylvania this weekend which was healing in its normalcy.  We visited with our family and friends, swam in the neighbor's pool, barbequed, watched sports, and just enjoyed being home for the long weekend.  It was the most active I have been since recovering from the infection I had and, for the most part, I was able to hang in there and be myself and almost forget about all of this cancer nonsense for a few days. 

Now we are waiting to hear from the Fred Hutchinson Center to plan the next steps of this journey.  The past week has inspired us with the continuing outpouring of love and energized us to face what is next.  Thanks you for the love and prayers.....they are what keep us going and make us certain that...

ALL Will Be Well

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival."

Wednesday, May 23, 2012

A Trip to the ICU

It has been a very eventful month since my last blog.  Cycle II took about 5 days with tons of chemo, but caused minimal side effects other than fatigue and more hair loss.  I was sent home to recover until a biopsy a few weeks later after my body had time to recover.  On May 3rd, I had a regular check-in with Dr. Broome and went home, only to go right back because I had a temperature of 101.5 (I’m instructed to call and head to the hospital if its over 100.5).  I was pretty bummed that I had to be admitted, but not worried (I needed a break from the hospital meatloaf).  This “neutropenic fever” happened twice before and meant spending 4-5 days in the hospital on antibiotics.  That evening, I got extreme chills that I was unable to shake even with a zillion heated blankets. Quickly, there were about a dozen nurses and doctors surrounding the bed.  My blood pressure fell drastically, my heart rate climbed dangerously, and my temperature spiked to over 105 degrees.  The medical team acted quickly, but they remained calm and reassured us that I was going to be fine.  Our friends Dr. “Jimmy” McCloskey and Mary Ellen, who work at Georgetown, both happened to be there visiting with us at the time and sprung into action with the rest of the team.  They were so helpful and added to our peace of mind.  Luke happened to stop by for a visit and was able to stay with Hanna.  It made everything much less scary to be surrounded by our friends during those horrible moments.

Later that evening, I was transferred to the ICU where they gave me medication to increase my blood pressure.  I spent Friday-Monday there and found out that my infection was “sepsis” (bacteria in the blood) and I had experienced septic shock. Shana, my mom, and Hanna’s parents came for the weekend to support us and made everything feel much more manageable. I spent another week on the "regular unit" with familiar nurses, doctors, techs, food service people, and ministers, who all seem like family at this point.  I was much more comfortable and things were less tense.  Hanna went back to work and visited me each day after school.  My blood counts recovered and I was fighting the infection like it was Apollo Creed so they sent me home on IV antibiotics for another 10 days.  After a few rough nights hanging the drugs at 3 am, we learned how to care for the infection at home and spent over 100 hours of the next week hooked up to the IV.  The antibiotics seem to make me extremely tired (not to mention recovery from the infection) so I've been sleeping and resting a lot.  I've also been enjoying Books 2 and 3 of the Hunger Games on my new Kindle as well as copious amounts of daytime television and an emotional over-investment, with little payoff, in the Phils, Sixers, and Flyers.

That pretty much brings us to yesterday when I had a bone marrow biopsy to see how effective the first round of chemo has been.  Since I can't have a transplant until the cancer is in remission, the results of this biopsy are crucial.  Dr. Broome said the marrow looked clear and promising, but we won't have the official results until later this week.  Please say a few extra prayers that the results come back as remission so we can make plans to head to the west coast in a few weeks.  We are planning to re-locate to Seattle, Washington for about 100 days to have the bone marrow transplant at the Fred Hutchinson cancer center.  They specialize in transplants for ALL and have some of the best success rates and most experience in the country....a nurse told us that the Princess of Saudi Arabia had a transplant there so it must not be too shabby.  We are very blessed to be able to consider this option and look forward to taking this next step on the journey to a cure.

I know I have said it before, but I have to mention again that everyone's thoughts, prayers, and kind words and gestures have truly inspired us to put all our effort into this fight.  Not gonna lie, this has been the scariest leg of the race so far, sometimes leaving me to wonder how I am going to get through this. But those moments are overshadowed by moments of hope, inspiration, and love brought on by the kindness and love of everyone on this journey.  With the help of our medical team, our strong faith, and the outpouring of support from family and friends (and friends of friends we don't even know), we know that we can do this.  and we WILL do this. And no matter what......

ALL Will Be Well!

"Hope is a good thing, maybe the best of things.  And no good thing ever dies."