Today, I got an e-mail from a Lady I never heard from but who is the Director of Special Events for the Leukemia Research Foundation. She contacted everyone who once Donated Money to Henry Declementis cause to raise money for Leukemia Research.
If you were along for the ride from the beginning of this Blog then you know Henry was Connor's first room-mate at CMH in Chicago on the Oncology Floor. There was something very, very magic about Henry as he was even at that point very sick but had the gift to make our boys laugh and even have fun. As to us as parents, Ron and I were so happy to meet Henry's Parents who were a wonderful source of information about the hospital but also showed us the true spirit of what it is like to fight along with your sick child and still have compassion for others and show tremendous composure.
Henry had a lot of set backs since we met and he had several very, very close battles. We learned that he finally found a Bone Marrow Donor Match and the Donor came from Germany. Today I also learned that there were some very intense complications after the transplant and this is one part of the message I got.
If you were along for the ride from the beginning of this Blog then you know Henry was Connor's first room-mate at CMH in Chicago on the Oncology Floor. There was something very, very magic about Henry as he was even at that point very sick but had the gift to make our boys laugh and even have fun. As to us as parents, Ron and I were so happy to meet Henry's Parents who were a wonderful source of information about the hospital but also showed us the true spirit of what it is like to fight along with your sick child and still have compassion for others and show tremendous composure.
Henry had a lot of set backs since we met and he had several very, very close battles. We learned that he finally found a Bone Marrow Donor Match and the Donor came from Germany. Today I also learned that there were some very intense complications after the transplant and this is one part of the message I got.
"Henry had a tough go of it right after transplant. He ended up in ICU on a ventilator for 2 weeks! His lungs were reacting to the donor cells and he wasn’t able to breathe, and he was having tremendous fluid build up. They used an experimental drug and dialysis and he started to respond. Unfortunately he lost a lot during those 2 weeks and is now in rehab re-learning a lot of the basics."
So once again I am asking of all of you to take a step back and look at your worries right now. How do they match up to the battle Henry is facing? How well do they compare to the worry and fear his Parents went through?
I am truly so sad and frustrated that once again an amazing, smart and bright child is suffering and fighting for his life while life goes on as normal for most of us.
We all have something we care about. The cause most likely is different for many of us but how can it be okay for children to suffer and die in our country and millions are spend on wars and paying out big bonuses to CEO's, but the money trickling in for any Pediatric Research is minor compared to other Research programs. Who really is our priority?
Looking at the debate and fight about our children's schools and education we all should realize by now it is NOT our kids who matter. I am sick of this and I know some day we will pay the price for this ignorance and detachment.
Please pick one cause that involves children and give that cause a voice. It is not always about money but we can add our voice and bring attention to it.
Hugs,
R A C A
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