12/24/2009
by Michael Wells Brady’s blood cultures finally came back from the lab and he has been officially diagnosed with Respiratory Syncytial Virus (RSV). Here’s what the American Lung Association has to say about it: RSV is a very contagious virus and the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children younger than age 1 in the U.S. Almost all children are infected with the virus by their second birthday, but only a small percentage of children develop severe illness. RSV can infect you several times during your lifetime. After each RSV infection, your body becomes more immune to the virus, but you are never completely immune. RSV passes from person to person like a cold virus—when someone with RSV coughs or sneezes, droplets travel through the air to others nearby or land on surfaces that others will touch. It can enter your body when you touch your eyes or nose after touching RSV germs. All this means to us is; we are officially quarantined. So, Brady, Sherrie and I will be spending a very lovely (and intimate) Christmas in his room. While it will be a rather different way to celebrate a holiday done the less we are planning a small Christmas Eve dinner. Our menu will consist of shrimp cocktail and assorted cheeses for appetizers followed by I’m thinking something Italian perhaps lasagna. Whatever Wagmen’s has cooked is actually what we will be having. It should be fun!!! And Sherrie and I have set-up a couple of chair right outside our room where she and I can escape for a few moments and maybe even enjoy an unauthorized libation or two. Can anyone say; “shaken or stirred?” Speaking of food; Aunt Ellen and Uncle Frank came to hospital again last evening bearing food. This time a wonderful Italian dinner which Brady and I simply devoured; Sherrie was home tonight and I’m sorry to say, we didn’t save anything except a couple of cookies for her. Yesterday was a very eventful day as Sherrie and I were HLA (human leukocyte antigen) “typed” for evaluation as possible bone marrow donors for Brady. It seems parents and siblings are quite often the best matches for this process. The test will determine if either of us are potential donors. Very simple test just drawing about 5 vials of blood but it takes about 3 weeks to get the results back from the lab and get this; insurance does not cover this procedure. It’s a wonder how this guys actually sleep at night. On the bright side; once Brady is over the SRV we will be going home! Maybe as early as next week, then the fun really starts! We are scheduled to meet with Dr. Bunin of CHOP (with Brady) January 5th for his initial pre bone marrow transplant (BMT) examination. Then it’s back to Robert Wood Johnson for the 3rd and (hopefully final) round of chemotherapy before we start the transplant procedure some time in February. The BMT will take anywhere from 3 to 6 months of hospitalization followed by 6 months of limited interaction with people other than immediate family. This is going to be a very interesting experience. Brady woke up about an hour ago and finally went back to sleep. For the entire time he was awake, he just sat in his crib staring at me. He had the most angelic smile on his face as he just sat and watched; very, very touching. This has been a long journal entry so before I put everyone to sleep, I will call it a wrap. There is just one more thing I would like to say; we cannot begin to explain our gratitude for all the love and attention everyone has directed at Brady. I will never be able to adequately communicate the overwhelming appreciation of your concern. It has touched my soul and I believe will change me forever… Until next time; may you and yours enjoy the peace and love of the Christmas season and please continue to keep Brady in your thoughts, prayers and hugs…“8 Years Later—Still No Cure for Pediatric Cancer” is a series of posts revisiting the journal kept by Sherrie and Michael Wells during the cancer diagnosis and treatment of their son, Brady Michael. Hopefully these entires will provide an understanding of the journey families face when dealing with these horrific diseases and of the important work the Hugs for Brady Foundation does.