It has been 1 year. One very long year. I just went back and read some of my old posts. If I had known a year ago that we would still be on this roller coaster ride, I would have probably lost it.
One year ago today @ 1:40pm the school called to tell me Joshy was ill. I picked him up and headed straight to the hospital. After an eval in out patients we were then ushered to the 4th floor and put into an much of a reverse isolation room as our local hospital has.
Loads of tests, trial & error drug withdrawals, blood transfusions, just to list a few, followed 1 on top of the other. Six weeks later we were transferred to the Cancer Center in Niigata city where we ended up staying for just over 4 months. <We are still on a weekly checkup schedule, too>
When I first heard the work Aplastic Anemia,<you can find the new Aplastic Anemia & MDS newsletter here> I was thankful it wasn't cancer. Now as I look back, I know that they are both just as bad cancer just has more treatment options.
Where are we today.
I still find myself in "hold my breath" mode. I never know when a little sniffle is going to send his precariously balanced blood counts over the edge & into the abyss, landing us back in the hospital.
I find myself wanting normal, but unsure what normal is any more. I know we have all changed. I am not the same person I was a year ago.
I still find myself waiting for each new test, hoping & praying that his blood will show a good response. <It is responding, but very, very slowly and he is not transfusion free yet. Not out of the woods by a long shot.>
Today also found us at the local hospital for PT. The 1st time Joshy has had a regular PT session in a year. Joshy was thrilled to be on the trampoline, 1 of his favorite things. Again, he hasn't been on a trampoline in over a year.
As I said a year ago, and many times in between, Joshy needs prayers. Thank you for praying. Please keep the prayers coming!
Joshy will have another bone marrow exam on Oct 23rd., Joshy's 5th or 6th in one short year. His last bone marrow test (6/26) showed that his bone marrow has rebooted, however, with his counts still being low it is obviously that his AA has not gone into remission. There is also the possibility that he has decided that AA is old hat and has moved on to something more exciting, like MDS <line above has info>.
Where will we be in another year... Only the Good LORD know. All we can do is keep on keepin' on and cling to the Truth!