Friday, August 26, 2011


It's hard to celebrate this first milestone when you are in the hospital and Amaey is not feeling up to it. He has been constantly complaining os stomach pain, aches, nausea, he throws up and is generally blah.
Not sure if it is the new marrow coming in that is causing all the pains. Not sure if he has liver GVHD. Not sure if this is his body's way of working inside out. But whatever it is is a bit hard.

Knowing Amaey it will have to come from him. He is the only one that will be able to change his mood and say, ok I'm ready to move on.
We have arranged a special buddy time tonight and tomorrow and we are hoping those will bump his mood numbers up.

We know he wants to get out of here, and he is worried about everyone starting school next week and becoming busy and he will be by himself. He was hugging Arjun and crying his heart out yesterday. I'm glad he cried. He was holding it inside for so long. He really needed to do that. I'm reading a Simple Path by Dalai Lama and he says that, unless you know you're suffering, the desire to be free from it will not arise. Consequently I heard an interview on NPR about a top coach who found out she has alziemars and she said something simple yet profound, it is what it is but it will become what you will make of it.

I think all of us need to let him be and let him come to terms with everything he has been through. Over the last 4 months it has felt like a fast paced run. Now that he is tapering off he and we will feel the pain and fatigue.


kat said...

Hi Purvi,
I wanted to let you know that I was blessed to see two BMT survivors this week. One little gal who is Matthew's classmate. She was diagnosed 4 months after Matthew. She is THRIVING! Mom reported that it took about 100 days for her to feel some what "normal". But she has returned to school and looks great. Also my dear friend Rob (AML)He had his transplant in the spring the first few months were very hard, but to see him today such a more healthy person, enjoying his family going on vacations this summer is wonderful. Lots of healing prayers for Amaey. we are thinking of him all the time.


Purvi Shah said...

Kat, thanks for the note. It's wonderful to hear about these positive stories. Thanks so much for sharing them!