There are so many emotions. Today I find it hard to be joyful at my son’s progress when I know one of his fellow fighters is going home on Hospice. I guess this is why we fight for more exposure, funding and answers.
Its so true. Even being on the nonprofit side now funding research, it’s still constant. It’s these huge wins and even bigger losses all the time. And everything reminds us of Ezra and our story… so we wind up proud of the work being done, angry it’s not fast enough, and crushed when someone relapses or dies. I see my son, myself, my wife in every family. I hate knowing what we felt, and then knowing that so many other people are feeling it too. It’s just not fair.
I just have to kick myself so many times telling myself to not think about odds and so on. I also have plenty of non great days despite Shalev being NED since the operation and recovering excellently. Totally feel what you are feeling.
Kyle…those words. Right to the heart. Exactly.
I can completely relate to this post. We have been inpatient for most of the last 7 months. We got released after 5 weeks of hell for BMT #1, thiotepa and cytoxin. Horrible and I was so very happy that we would get a 2 week break (in isolation) at the RMH in Cincinnati. I have never been so thrilled to be getting a 2 week break! Is it possible? we haven’t had that long of a break in long time! Then I hear about some other families that lost the battle that very day. Here I am in the happiest moment with the biggest smile and someone else was in mourning. I felt so horrible but couldn’t stop smiling!
I understand completely.
I am having some mixed feelings today.
We are going to get Shalev’s hearing aids today.
On one hand I am delighted that Shalev is going to have an easier time hearing. On the other hand I am super bummed that these platinum based drugs took away his normal hearing.
I echo Dawn’s reponse…