Connor B. - Quilt Finished in 2008
Born: August 23, 2004
Illness: Hypothalamic & Spinal Pilomyxoid Astrocytoma,
Diabetes Insipidus, Hypothyroidism
A Thank You From Connor's Family!
July 21, 2008
We received the quilt today. Connor absolutely loves it!! He told me to "try it" out. It is soft and very beautiful. He has been sitting with it around him since it arrived! Here are a few pictures of him with his quilt. We will be taking it to clinic on Friday so he can sleep while we are waiting for chemo.
Connor loves it and I love it too!!!
Thank You SO Much!!
Cheryl and Connor
Connor B.'s Story
Written by Connor's mom in May 2008
Connor was born while his daddy was deployed to Iraq in August 2004. He lived a very happy and healthy life. During my husbands 2nd tour in Iraq Connor started showing signs of illness. At first it was almost unnoticable, drinking a lot of water and urinating a lot - approx 100 oz of only water (no juice) and urinating approx 100 diapers a week. Then he started vomiting and it became more and more frequent until it happened every 24 hours. He lost weight and his bones showed.
His pediatrician sent him to a doctor who thought we were the cause of his illness so they hospitalized him. After many needle sticks and blood tests nothing came back so they said they would do an upper GI w/ a lower bowel follow through and a head CT. On May 27, 2006 they came back and told us that he had a mass right in the center of his brain and scheduled an MRI for the following Monday, he was 20 months old. They came back and told us it was a tumor and they needed to operate the next morning since it was approx 2 cm in diameter.
On May 28th he had brain surgery that lasted over 8 hours, the surgeon told us they got about 95% of it out but the rest was in the brain tissue and could not remove it without causing harm. He spent a week in the PICU because he had issues controlling his sodium level - it had eventually caused a seizure. We were in the hospital for 5 weeks when they decided to do another MRI of both head and spine to make sure it had not traveled anywhere down the spine since the pathology showed the tumor as a pilomyxoid astrocytoma - a very aggressive low grade tumor.
The MRI showed the tumor was wrapped around his spinal cords and they didn't want to operate. So they started his on chemo June 22, 2006, carboplatin and vincristine & temodar. By this time they had placed a portacath and a g tube so they could feed him and help him gain weight. He weighed 16 pounds after the brain surgery and was released when he weighed 21 pounds. He did 18 months of carbo/vincristine and temodar regimin. He stopped chemo December 2007.
His next MRI in February 2008 showed growth, we went on his Make A Wish trip to Disney World/Give Kids the World then came home to begin and experimental chemo treatment. He is now taking a high dose of celebrex and cytoxan (in a low dose)and will have an MRI June 23, 2008 to check his progress. His sodium is never stable but now more understood. He weighs a whopping 66 pounds and is 3 1/2 yrs old. He had a lot of nerve damage from chemo and relearned to walk recently. He cannot speak normally either. The type of tumor he has is so new that there is no set treatment and no "cure". The only thing they can do is treat the issues as they come up and hope we have minor growth. He is doing very well now. He still has a brain and spine tumor and other health concerns too, that will most likely not change, but he is a very happy little boy and enjoys having fun.
