Friday, October 10, 2008

Upsetting news x 2

One of the blogs I read regularly is about a boy named Elias. He was born May 1, 2008 and because of the Vacterl Network, they found us or we found them. Michael and Katharine are his parents, and Elias is their first child. Elias has been in the NICU since he was born. They have just found out that Elias does not have Vacterl association, but Fanconi's Anemia. They are devastated, and Michael called it a "crushing blow." I'm in tears right along with them. I remember Brody getting tested for that, and being so afraid of it. I cried when they told us it was negative for Fanconi's.

As Michael said on his blog, Fanconi's anemia is characterized by physical abnormalities, bone marrow failure, and increased risk of cancers. Progressive bone marrow failure typically presents in the first decade, usually around seven to eight years of age. There is also high instance of tumors of the head and neck, esophagus, and liver. People with Fanconi anemia often develop leukemia and other cancers.

Then there is Dante. Dante is Brody's age, 2, and has been battling neuroblastoma for 10 months. And his family just learned that the cancer is back, or spread, to his eye socket and leg. He started radiation immediately. We were hoping the scans would come back with good news. Not this.

Then I look at my Brody, and I wonder if there are any children anywhere who are healthy. I can't believe I didn't have my first surgery until I was 33. How naive I was. I get updates for 9 carepages and 6 caringbridge sites. Even with Brody's medical issues, how naive I was until this week.

I cannot bear these children being so ill.

I am so angry. I am so angry right now. I don't understand. I don't understand why some children are never sick and some are always sick. I don't see what purpose that serves or what good goes into the world from that.

If anyone is reading this, please follow the links above and post a message of support to those two famliies. They received the news that no parent can bear to receive this week and need every piece of support they can get.


momoftwolittleones said...

I totally understand what you mean. There was a little girl that has been at Duke since she was born back in March, she didnt have VACTERL but she had HLHS and DiGeorge...she fought so hard...but she passed away and it just broke me to pieces. Why did that little have to spend all those months hooked up to monitors and a vent and eventually a trach and go thru two heart surgeries all in her short life...I sit here looking at my son who now has C-Diff and I just wonder why makes no sense at all. I just have to believe that God has a plan for us all and somehow, someday, we will figure it out when we are before Him.

Alina said...

I'm so sad for everyone dealing with serious childhood conditions of any sort. It really isn't fair at all. :(
I'll visit your friends blogs and offer support.

Jacque said...

It is so sad and seems so totally unfair. Recently a neighbor (in her 20s) and her daughter (6) died in a car accident. Her son (4) survived the accident. Why would this happen?? I got calls all day of people making sure we were okay because it happened so near us. I still can't get that husband and son out of mind, and I think how it could have been us. Why them and not us? How did I get so lucky to have healthy children? I constantly worry that someday the ball will drop. I pray not. Many prayers to Dante and Elias.

My Carousel of Progress said...

Thank you Christine for sharing your thoughts and Elias story. It has certainly been a tough 36 hours since finding out. Everyone's thoughts, prayers, and words have been very comforting. It certainly is not fair that so many children have to suffer. It certainly seems needless and leaves one to wonder what good can come from it. I think that if nothing else it helps us to cherish and appreciate the little things that we often neglect or simply take for granted. We just wanted to thank you again for all your support, and we hope all is well with your family.