12/27/2009
by Michael Wells Yesterday was an exciting day as we were able to have Brady unhooked from all IV pumps for about 3 hours. While we still could not leave the room, we did play on our bed and soon all 3 of us were sound asleep. We slept over 2 hours and then had a dinner of leftovers and watched the end of the Pittsburgh football game. I left the hospital around 8:00pm and unfortunately when I spoke with Sherrie around 10:00pm Brady was once again experiencing extreme vomiting and diarrhea. It’s very difficult to explain exactly how awful this disease is and the total havoc it causes. It’s like the little Dutch Boy trying to stop a leaking dike; put your finger in one hole and water starts flowing out of another hole. All the meds Brady has been receiving causes various reactions with one another and add to this a little RSV virus and a little C-Diff and you’ve got yourself a total mess. I was completely naive about all of this before Brady was diagnosed with leukemia. What else can I say; Brady is without a doubt a super kid who is fighting for his life and it’s just beyond words to explain what it’s like to watch. The debilitating aspect of an infant with leukemia is just simply awful and Brady’s “one of a kind” type makes it even more disturbing. I know I am not the first parent to experience this and I know I am not the only parent going through this either but believe me that knowledge doesn’t make it any easier to experience. Brady is so fortunate to have Sherrie for his Mom because she is there for him 100% of the time and she is always at his side making him as comfortable as possible. She’s just a terrific Mom and I truly envy her courage and strength. I’m home catching up on the laundry so let me get back at it. Until next time; make sure you add Sherrie to your Bray list of prayers, hugs and thoughts as I think she could use a little help right now…A Game Plan… We just met with Dr. Drachtman (Brady’s lead physician) and we have a game plan in place, as long as Brady remains “healthy”. This coming Wednesday Brady will have a bone marrow biopsy to see how well the second round of chemo went. Then, he will hopefully be discharged on Thursday, New Year’s Eve. Brady will have four entire days to be home and run free! On Tuesday, January 5th, Brady will see Dr. Bunin at CHOP for bone marrow transplant preparations and testing. We will be returning to BMSCH on Thursday, January 7th to begin Brady’s third round of chemotherapy. By that time, we will know the critical results of the bone marrow biopsy done a week prior. Thank You to… Kathleen Michalsky, Aunt Ellen’s Columbiette sisters at St. Augustine’s, for the home cooked dinner, complete with all the fixings! Yummy! Ellen and Frank Gambatese’s Columbiette friend (Michael didn’t get her name) for what Michael described to me as “a dinner I should not have missed” due to the amount of cheese and homemade chocolate chip cookies involved! Rutgers Dance-a-thon for the stuffed animal and the Mr. Potato head. Brady thinks it’s funny to try to wear the small plastic hat. I hope the dance raised a lot of money for the LLS! Thank you to the former anonymous patient (a 22 years old male that is doing well) who quietly delivered toys to all the hem/oc kids. I brought your gift home because I thought it would be nice to surprise Brady with a Mickey Mouse stuffed animal when we go home next week. You are truly treasured for having such a big heart! Brady is sure to love his new Mickey. Anna Simonitis for the donation via the marathon runner, Brittany, for the Leukemia and Lymphoma Society*. George Ciottone for the donation to Caring Bridge. John and Marion Wells for the donation to the Leukemia and Lymphoma Society. The Gymboree art teacher, Sandra Gatsch, for having a ton of Christmas cards sent to Brady. The cards from the kids brought tears to our eyes. Brittany Hertis for the reindeer and the hand made t-shirt that simply states, “If you think my nurses are HOT you should see my PCTs!” We love it! Jacklyn, Lori, and Brian for Brady’s first scooter! He is sure to be running circles around me when the weather warms up. I’m sure that the entire hem/oc unit was just as surprised as we were for the gifts from the Ceraola family. To everyone that participated in the BMSCH 2009 Toy Drive. Trust me, the families here are grateful for your presents much more than words can express.
*The Hugs for Brady Foundation will ALWAYS be in support of other foundations who allow people to donate blood, platelets, plasma, or register to become a bone marrow donor. However, we no longer ask supporters to donate financially to ‘The Leukemia and Lymphoma Society’ as their focus on childhood cancers does not coincide with our foundation’s mission.
“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.