40th Bone Marrow Transplant Reunion

The City of Hope has been doing Bone Marrow Transplants for 40 years.  They are the only center with a better than average success rate the last 5 years.  Every BM transplant patient gets an invitation to attend a reunion.  We attended our first.  Talk about an amazing event!  Like everything else COH does, this event was run like a fine tuned machine.

At check in, nurses ask how long it has been since you had your transplant?  They write that number on a huge button for you to wear so you can see how long everyone has been post transplant.  There was an opportunity to have your picture taken.  They gave us a picture and another one was hung on a tree.

Our daughter surprised us and came in that weekend so she was there as well making this event even more special.  Tons of food, a Beatles tribute band, free food, a comedian performed, more food and there were speeches from the CEO,  and Tommy Lasorda (yep!).  Did I mention lots of food???
The comedian, a BMT survivor from COH, was pretty funny.  He talked about all the things every single person there could relate to...like all the patients carrying gallon jugs of urine at the hospital, I couldn't believe all the nurses have to do, the minute you check in they start an IV and insert a Hickman, I need a cardiac stress test???..."I have cancer, how well am I supposed to do!!!"  Some of the things he joked about I forgot we had to deal with!

There was also a song/dance number from some of the nurses and doctors.  The very first BMT patient, from 39 years ago was there!  I think how much better their process is now...that man is truly a miracle.  Honestly, every  patient there is a miracle, a modern day Lazarus.  Several people had two buttons because they have had more than one BMT.  A women at our table had multiple myeloma and is 1 1/2 years post transplant.  She unfortunately was told she would need another transplant.  Sports Illustrated had an article featuring Craig Sager (sports analyst for TNT, he covers the NBA games) who has had 2 BMT and was told he needs another one.  His son has been his donor.  I can't imagine doing this again, much less 3 times, but we will do what we have to do.

And can you believe it rained!  The only thing they weren't able to get done was the massive photo of all the BMT recipients that attended.  This was definitely an event that we will try to attend every year.  It's a club you don't want to belong to, but if you do, it provides humor, camaraderie, hope and success.  

Day +190-Day +203

4/26/16-There is a man next to us getting instructions from a nurse…"you will get 3 shots of Neupogen three days in a row and then you will come in so we can harvest your stem cells".  He looked uber nervous as the nurse continued, "we are not taking your bone marrow under sedation like we used to"... This man is a bone marrow donor and is in the process of giving new life to a lucky recipient.  I reflect on how humble and grateful we are for Steven's new bone marrow.  He is doing really well!  There is nothing like good Midwestern stock and an excellent HLA match!  We are almost 7 months post transplant and so much has happened and there is so much more that needs to happen.  We now know why COH gave us information in small amounts... this is the most overwhelming process we have ever experienced.  Even in small amounts, this has been daunting, joyous, depressing, confusing, and awe-inspiring, all at the same time.

I wait in the patient/caregiver library while Steven is getting his blood drawn.  Several anxious couples are waiting for their first of many classes.  Today is a bone marrow class for all new patients and their caregivers.  It seems like yesterday that Steven and I sat in that class.  They have no idea what they are in for but have taken the same leap of faith that we did, that it will all work out for the best.  You have no choice and have to work through it.  It's been a year since Steven's diagnosis and the reality of how fragile life is.  Unless you have walked in our shoes, it is hard to imagine how consuming this has been.

Lazarus…I mean Steven, has had his blood drawn and we are waiting for clinic.  He experienced hives over the weekend and had to take Benedryl.  It could be graft vs. host disease.  They are slowly reducing one of his anti-rejection medications, Tacrolimus.  It is exciting that they are reducing this but nerve racking at the thought of GVHD.  Mouth sores don't seem to be an issue anymore but rashes are.

The lab results are back and his hemoglobin is 10.1 g.dl, WBC 3.1 and a normal ANC.  We are living large!  Our doctor said that Steven is doing really well.  How well?  Steven has been working 2 days a week.  This is huge considering when we started this process, our doctor said he recommends his patients do not go back to work for a year.  Although, he is pretty exhausted when he gets home and usually takes a nap. It is just another reminder what his body has gone through.

Steven has started physical therapy twice a week.  Between the loss of muscle mass and neuropathy, he is working hard to regain what he has lost.