We got a call from the transplant Dr today. I knew the number when I saw it and hearing his voice was as familiar as if we were just there yesterday. He apologized for taking 5 months to call me. He's a very busy researcher but he still felt bad about it. The report wasn't ready for a while and then he'd forgotten about it. I'm getting a copy of the results in the mail as well. They checked for Leukemia and none was found. They checked for Adenovirus and that was gone also. The primary cause of death was VOD (Veno-Occlusive Disease) which is liver failure. It was more severe than we all realized. He had fluid around his lungs, which we knew and is a side effect of the VOD. The only thing they found that we didn't know about was bleeding in the lungs. He said it's common for people on ventilators for a long time.
He said there was nothing we could've done. We made all the right decisions and it all just comes down to Infant Leukemia being very difficult to cure. Since Tyler died, I've known of 4 other Infant Leukemia kids who have died in the last 5 months. It's not fair at all. To suffer through treatment is horrible enough, but to have no reward for all that and to have to live without them is so much worse.
It all just sucks! Getting that call just brought me right back to where we left off in the hospital. It was weird getting an update and knowing this is the last update I'll ever get. This is how it ended. I hate how bad everything got and I just hope he was on enough meds not to feel any of it. It still feels like a bad dream sometimes and I get those sudden moments of realization that he's really actually gone forever and it all hits me like a brick wall all over again.
I found this on another grieving mom's caringbridge site. It's all so true!. It's tough to deal with people who don't try to understand. I know that it's impossible to truly understand, but some have just lacked compassion and even told me to stop mentioning him. I sure hope they never have to truly understand this pain. I don't need a pity party, but sometimes I just feel the need to post a pic because it feels good to see his face and talk about him. I share things in hope people will gain understanding and know what we are going through. He is still part of our daily life. What we talk about, have to explain to Dawson, have to wonder about, the things we miss. There isn't an hour that goes by without thinking about him. Thank you to all who have stood by me through all this and been so supportive. The things people have done for us will never be forgotten and have truly made our lives much easier!
A Bereaved Parent's Wish List
I wish my child hadn't died. I wish I had him back.
I wish you wouldn't be afraid to speak his name. He lived and was very important to me. I need to hear he was important to you also.
If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. His death and absence is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
Please don't remove his pictures, artwork, or other remembrances from your home. It helps me to know you want to remember him too.
Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.
I need diversions so I do want to hear about you: but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about him, often my favorite topic of the day.
I know that you think and pray for me often. I also know that his death pains you, too. I wish you would let me know these things with a phone call, a text, a card or note, or a real big hug.
I wish you wouldn't expect my grief to be over in six months. The first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.
I am working very hard on my recovery, but I wish you could understand that I will never fully recover. I will always love and miss him, and I will always grieve that he is gone.
I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time.
I don't want a "pity party", but I do wish you will understand when I have to grieve. Sometimes you have to hurt before you can heal.
I wish you would understand how my life has shattered. I know it can be miserable for you to be around me when I am miserable. Please be as patient with me as I am with you.
When I say, "I'm doing okay," I wish you could understand that sometimes I don't feel okay and I often struggle daily.
I wish you knew that all of the grief reactions I'm having can be completely normal. Depression, anger, hopelessness, and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.
Your advice to "take it one day at a time" is excellent advice. However, a day is sometimes too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.
Please excuse me if I seem rude sometimes; it is certainly not my intent.
I wish you understood that grief changes people. When he died, a huge part of me died with him. I am not the same person I was before he died, and I will never be that person again.
I wish very much that you could understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never have to understand.
9/19/2011, 4 days after transplant and 4 days before he was sedated for the rest of his life.