Monday, February 4, 2013

Day 97 - Homeward Bound

The last few weeks have been a whirlwind of tests, meetings, classes, and consults to prepare us for the more than year long chapter of our story that will be termed "long term follow up".   After more than four months we will officially leave the care of the yellow transplant team, the SCCA clinic, and the Pete Gross House and head home to the care of our Georgetown team and, of course, our family and friends.  While we couldn't be more excited to transition to this next phase of recovery, it brings with it a number of new complications and continues to require quite a bit of medical management.  We're learning firsthand that this recovery will be slow and are coping with the "new normal" life after transplant.  Dan takes tons of pills, tires easily, requires a nap a day and suffers from aches and pains on a regular basis.  Every few hours there's an IV to pump,  a medication to take, or a temperature to log and he is encouraged to exercise twice a day to rebuild his deteriorated muscles (we want Dan to get back to his beefy self!).
For at least the next 3-6 months, Dan will continue his current regimen of medications, weekly doctor visits, bloodwork, daily IV magnesium, and special diet with immunosuppression precautions. We're getting the "okay" to go home, but not much will change right away regarding Dan's medical status.  We will closely monitor symptoms at home for possible graft-versus-host disease (GVHD) complications until Dan is off immunosuppressant medications that currently keep the peace between the new and the old Dan.  Right now, he and his donor continue to invade each others' space (recall the sandbox analogy) so decreasing his immunosuppression is very delicate and way too complicated to explain in a paragraph.  While the drugs keep his immune system suppressed, Dan is much  more susceptible to getting sick, hence the excessive hand washing, isolating from crowds, avoiding sick people, and following a special diet.  Naturally, we'd like him to be off these medications, but the risk of his body flaring in severe GVHD (an epic sand fight) is too large so our team is recommending we continue the medications for the first year.  
In other news, my parents came for a quick visit this week to celebrate the good biopsy results and lug home a few checked bags of our stuff back to PA.  We gave them the clinic/hospital tour, ate some great meals, visited a few tourist attractions, and made plans for the transition to our new "regular" life at home.  It was a great visit and geared us up even more about heading east.
a day at the clinic
We're experiencing a lot of emotions about going home that include excitement, joy, and relief, but we'll also scared, anxious, and overwhelmed at the thought of this going on for at least another nine months and likely longer.  The transplant took a toll on every part of Dan's body and the repercussions of that are lifelong.  We are blessed and always grateful to our medical team for safely getting Dan to this point, but we have a long way to go and many risks ahead.  We thank God every day that the leukemia is gone and ask for strength and endurance to continue safely to the finish line.  We can't live our days afraid of relapse or obsessing over signs of GVHD.  What we can do is live and love fully, find little joys every day, love our family, cherish our friends and take care of Dan today.  We've learned a lot about that in the last three and a half years and even more in these 100+ days, but we will continue to remind ourselves of our blessings to muster up the courage we'll need in the future. 
The leukemia is gone.  We got what we came for, but this journey is not over.  Dan's progress is slow and the difficult task of getting back to normal is just beginning.   Through our faith, our family, and our friends in addition to the advancements in the research of this disease we have the strength, courage and endurance to stick with this.  We will win and ALL will be well. 
AHH OMG!! We're going home!   

1 comment:

  1. Know that we will all continue to support you both. Whatever you need. Love you.