September 26, 2012- Whew, barely made it through Summer!

Just the Facts-- Almost to the 1 year marker for GVH of the skin. Recurrence of GVH of the Gut and Mouth through the summer.  Blood levels are up, up, and away!!!

So, it has been some time since I last wrote about B and our adventure.  February to be specific.  Since that time we have had a daughter get married, then get pregnant, and a niece get married.  Life has such a way of continuing even if it has slowed down for some of us.  This is my second summer of not getting in the ocean.  Hard to believe it now that I am reflecting on it.  It's not so much that I cannot, but I would feel really guilty because that is all B is dying to do and he still cannot.

Earlier in the year B starting to work a little, only about 1 or 2 small jobs a week.  I have to say that this was nice to get a little extra income, since we have been living on a squeezed budget for the last 2 years.  Just as B was getting a rhythm, the Docs decided to try to lower some of his meds.  For a few weeks this seemed to be successful.  He was experience severe joint pain to the point of possible considering a wheel chair.  This pain was a direct result of some of the chemo meds. They changed that out and he started to feel relief almost immediately.  Then after a few weeks of lowered immuno-suppressants, we begin to see the skin rash kickup, and it begins to go through its courses of redness and internal fire, then peeling and tenderness.  Then we notice his stomach having some fits and before we realize his mouth is full of GVH.  In case you have forgotten, (wish I could) GVH is Graph versus Host and is common in transplant patients.  The graphed cells are fighting with the hosts cells and are embattled in a type of war.  For cancer patients this is good as it tend to fight away the tumors.  But for B, he doesn't have cancer or tumors, so the Docs are baffled by the length in which he has suffered with this.  So after the rise of various GVH symptoms, up go the meds, which is exactly what we are trying to avoid.  It even got so bad that they had to put B back on "steroids".
This was scary for me.  Fortunately we have not has a recurrence of any prior steroid activity. Thank Goodness!!

So we are now on the eve of another phase of recovery and a new treatment.  When you think of it all this stuff is a bit sci-fi.  For the next 6 months he will be having his blood treated with UV rays.   It is quite a process and commitment of time and hiding from the sunshine but we are told they have had great success.  So it is with this in mind that B will subject himself to hours hooked up on both arms to a apheresis machine while it draws blood out and separates it, treats one part of it, then UV infuses it and finally mixes it all back together and puts it all back into him.  He will be highly sun sensitive and cannot drive while being treated on those days.  He has to give up some freedom now, to gain some freedom in the future. 

Some people say we have been through a lot.  And in reflection I would certainly agree.  However, I never really stray far from the thought that B is here.  He walked his daughter down the isle and will soon see his first grandchild, he attended his nieces wedding and is seeing our youngest go to college.  He would not have experienced these events if we had chosen a different direction.  So for that I am grateful. If you think of B and his new bionic blood, would you take a moment to keep him in prayer? This is what got us through that first very difficult year and we would so appreciate that kindness from you all.

Until next time,
Hopeful Believer.

PS, photos are before, during and after treatment!

February 12, Day 1.16, Getting on with it!

"Just the Facts"-- Blood levels continue to hold.  GVH rash is hanging on and being stubborn, using high levels of chemo meds to abate the rash.  Tired, still immno -suppressed, and still have a pic line.

Wow, January has always been a blur of a month for us.  We celebrate several birthdays, an anniversary and being in accounting lots of year end reporting to complete.  Not to mention planning for an upcoming wedding in the near future.  Even though the month has blown by, we did not miss the significance of January.  We quietly celebrated 1 year since B's Bone Marrow Transplant.  I reflected on all that went on during this past year, while B was wishing he was further along and is pressing to move forward.

I have reflected back over the year because I am thankful for the fact that B was here to celebrate both his new and real birthday, our anniversay, other family birthdays.  I am also thankful for the fact that we have all survived by the love, grace and support of so many.  It's been a wild ride and I don't want to forget, that strength was provided when needed, food was provided and continues to show up, financial support has been provided in many ways. Care and concern has shone up over the year in so many ways and in a constant form. The abundant prayer that has been presented to our King is beyond counting and it continues today.  I choose to not forget where we have come from and how far we have come. I want to stay in that state of thankfulness and reliance on what the Lord will do in our lives.

B, on the other had, has trouble with recall of the past and doesn't want to entertain thoughts of what he has been through.  He want to focus on going forward and to recapture his health, re-establish his work capabilities and enjoy this new lease on his life.  I can understand this about him, as he has been through a tremendous amount of issues.  Even though he is struggling with his third round of GVH rash, and suffers from the burning of his skin from the inside out, he is focused on getting back to work.  He has been writing (stenography) for the last 3 months for periods of time each day.  This builds speed and endurance all of which is required for tasks on the job.  The past week was one to mark on the calendar as first, he visited his office and said hi to all the folks there for the first time in a year.  Then he sat in on a depo as a backup and ended up staying the entire day.  Tired but confident he made it home and rested through the weekend.  It is very possible that this new week he could take a job for the first time in over a year!!!!   All this while he is on the highest level yet of chemo for the rash.  He can't take steriods any more. (thank goodness).  So we will continue this course of medicine and see what the doctors determine as they watch him carefully.  What he had was so rare that they really don't know exactly what to expect and are cataloging what the recovery process is so that they can record this in a medical journal.  All we know is his blood is holding and we are so very happy about that.  Each new day brings hope and excitment for what the next step will be.  If you are lead to pray for us, please pray that the rash would begin to retire and we could come off the meds slowly this time.  We thank each of you for your care and concern for the adventure we have been on. It has been a wild one and we are very thankful we didn't have to go it alone. Bless you.
Until next time,
Hopeful Believer.