I have a friend who said you should write about what’s going on it could also help other parents. And it’s also difficult for me to write because it’s too real, but when I paint it’s removed enough in a way.
And I decided I was going to paint birds. It’s a French title “…..”if it was translated it means birds in all their states and it means that you’re really upset.
Again, taking one step at a time and right now Suleika has improved with her treatment and they tell us there is a 40 to 50% chance of success and that means that we could be there and that’s what I have to hold on to.
I know it’s a very difficult, risky procedure but we have no choice. I worry a lot actually about him because he’s now the only life-line to his sister, so I worry about his health so it’s kind of like a double-worry. We take our strength from her, we feed on her sense of optimism and hopefulness.
In good days when she’s feeling really well I forget all about it. But it has been constantly on my mind. I still feel dazed or distraught sometimes I wake up in the morning and say “oh my god this can’t be happening to us, it can’t be happening to her”.
I don’t want to spend my 24th birthday in a hospital. Suleika, it’s going to take a while to get your to come back normally. I’m convinced that I’ve been sick since my sophomore year.
I’m nervous, but I’m not nervous for me, I’m nervous for her because I understand that chemo is going to be tough. They do everything but kill her and so she has nothing left. And then they use my bone marrow and re-grow her immune system.
I feel helpless too because I didn’t to do anything to help her, it’s just genetics. If I could make sure that she was going to be alright with my bone marrow then I would be doing something. But just the possibility that it’s not going to work makes me feel helpless just as much.
When it comes to my brother it’s complicated, I think he feels a mix of why her and not me? The same time he feels very responsible for what happens to me both because he’s my brother and he wants to protect me but also because he’s my bone marrow donor and it’s his bone marrow that going to give me my one shot at a cure.
So that’s pretty heavy. I have a difficult time feeling optimistic about the procedure and feeling like it’s actually going to cure me. When the odds seem stacked against me or at the very least even I still don’t see the light at the end of the tunnel, far from it.
On April 11th, Suleika Jaouad received her brother's stem cells.