Tuesday, April 10, 2012

Autopsy Results & Grief Wish List

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
(Author Unknown)
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.


Team Brennan said...

thank you for sharing this. my 2yr old grandson is near the end of his fight with neuroblastoma and sarcoma.

Rosanna Diaz said...

I am following brennen's journey too...there are no words...my heart is criying for Brennen and your family. Hugs

Rosanna Diaz said...

Thank you for sharIng your update I appreciate and am compassionate about what you are going through. They say grief is a process but you're right I don't think a parent can ever heal from this but please know that you have supporters behInd you. I will never tire from seeing pictures of your amazing baby or hearing about you and your family. I thank you for sharing him with us.

Jewels said...


Honestly, I'm...shocked that someone - anyone - would tell you to stop mentioning Tyler's name. The idea is abhorrent! I only knew sweet Tyler from his CB and FB - from what you chose to share with us - and *I* think of Tyler often. Perhaps not daily - but several times a week, certainly. Whenever I see something to do with Disney's 'Cars' or 'Cars 2', I see Tyler in my mind's eye. What comes to mind is that picture of him surrounded by the 'Cars gift box' he got, just a bit before transplant if my memory serves me.

So if I - a total stranger who only knew him online - think of him that often...how often must you think of him? If I remember him five months later, and think of you and your hubby and Dawson and Gabriel, hoping that your day is going well, wishing that he had survived, then how long is is "supposed" to be before you move on?

Good grief - he is your SON - your middle child - your baby boy whom you carried in your body for nine months, and in your arms for 2 1/2 years after that. Why would you *want* to forget him? What rational person with even a modicum of empathy - or even of sympathy (since some people are incapable of empathy) would expect you to just go "Oh well...he's gone. Time to move on." Good grief!

In short...please know that some of us DO think of Tyler often - and DO remember him - and DO think of you - and WILL listen to you any time you want to talk about him. He was a darling little boy who should have lived a long and happy life - and he will NOT be forgotten!

Jewels said...

P.S. Happy Birthday, Gabriel! I can't believe he's already a year old...and that Dawson is almost five now.

Erin said...

Never, EVER, stop talking about Tyler!!!
I know that you wouldn't, I can't believe someone would suggest that......
We continue to read your blog faithfully, thank you for giving us a " peak" inside your lives.
Very glad to hear that Daniel got a job!!!
You and Daniel and the boys are ever in our thoughts and prayers
Big Hugs! Erin Hackett

Mommytothreeboys said...

Cancer sucks horribly! You have went through and ultimately lost one of the most important people in your life and while I don't know first hand what its like ( and I thank God everyday) but I have seen someone go through this too and I know you will never truly be whole again. Please ignore those people who feel selfish enough to tell you something so stupid as to stop talking about him. And remember those who have prayed for you and Tyler and who are still praying for you.

Angelica (Dennis' wife) said...

I can't imagine the pain your going through. My son has had reoccurant intesiception since he was 5 months old. We were terrified that we were going to lose him several times. Watching all of the pain and surgeries that he was going through was so hard. And the fact that so many doctors were telling us... oh he looks great! Even though he was in so much pain he was still a happy boy. The first surgery that they did they found 4 of them going on at once and had to reduce 3 out of the 4 of them. They said that one hurts so bad that it would bring a full grown man to his knees. It's amazing what kids can put up with. Intesiception is if you will imagine a collapsible telescope... the intestine collapses into its self and pinches off. If it is left pinched off for too long then the bowel begins to die and will perforate and kill the child/person. He is now 3 years old and has not had many episodes with in the last year. We are very thankful for that. We never lost our son. I can't imagine what that must be like. Thinking about it agonizes me. I am so sorry for your loss. He looks like such a sweety! You will be in my prayers and I will pray that God gives you strength to get through this and just remember that God is always on your side. Your baby boy is with him and is no longer in pain, but dancing in Heaven!

Anonymous said...

Stephanie, thank you for sharing and never stop talking about him....what he nah be thinking when something happens....wondering what he might be when he grew up....anything make him a part of your everyday. Happy or sad I'm here.

Museousky Family said...

Stephanie, although we've never met, I think about you guys so often. Your blog was one of the first I followed and little Tyler was the first baby that I followed that earned his angel wings. Unfortunately there have been several more since then and it just breaks my heart.

My son was diagnosed with AML last July. He was 20 months old at the time. He's in remission and doing well now but sometimes when I look at him, he reminds me so much of the pictures I've seen of Tyler. I am SO SORRY that you won't get to see your little boy grow up. It brings tears to my eyes every time I think about it. It's so unfair and I so wish that a cure could be found so that we could quit losing our babies to this awful disease.

This fall we are participating in a Light The Night fundraiser for the Leukemia & Lymphoma Society. Little Tyler will be one of the angels that we will be walking for that night. Please know that he (and your family) will never be forgotten.