Returning Back to Normal

Over the last year I've longed for our old 'normal', for a while we were uprooted and thrown into the cancer world. We spent days and days at the hospital. We spent hours in doctors offices, and we spent several nights inpatient. We ate more cafeteria food than anything home made, and we struggled to keep our family together. We spent 93 days inpatient in the ICS unit in 2011... 93 days is an awfully long time. We struggled during each and every one of those 93 days and we often struggled in the other 272 days that we were lucky enough to be home. But now, we are finding our place again.

Returning back to normal has been so natural in some aspects, and in other aspects it has been such a struggle. Jackson is doing incredibly well. He is getting stronger each day, and he is so happy to be 'done'. We still have visits to the hospital, but only twice a month at this point. We don't know if the chemo worked, but we are hopeful, and prayerful, and optimistic.

Jackson's body has been through a lot, and although his hair has finally grown back, his body is still recovering from the extremely harsh bone marrow transplants that it received. Jackson's platelets are still extremely low at around 20...normal levels are between 150 and 450, but they have decided to not transfuse him until he either has extreme nose bleeds that will not stop, or until he gets to 10 or below. So far his body is making a few platelets here and there, but he is not recovering they way they expected him to recover.

After a bone marrow transplant, the doctors have certain guidelines and rules that each patient must follow closely for the first +100 days. Today Jackson is on day +86... we are so close to that day +100. Around day +100, they will allow Jackson to return to a normal diet again... which he can't wait! Of all the things he is DYING to eat, he is the most excited for....get this... Cafe Rio. Yep, I guess he is my son after all... even though he looks more and more like his Daddy every day.

Day +100 is a big deal. I am so excited for April 22nd!

As far as returning to 'normal', to be honest, it has been wonderful. I love that my boy is out riding his bike again. I love that he is playing and running and laughing. I love that he is alive... what a blessing in that alone.

I have recently been in touch with a new family from Texas that has a little boy that was recently diagnosed with ATRT. My heart goes out to them and their little guy. Reading emails back and forth from them has been difficult for me, because I remember all too clearly the emotions that I felt at Jackson's diagnosis. If you have time, you can check out their blog, and I'm sure they would appreciate any prayers you could send their way.