12/15/2009
by Sherrie Wells Sherrie’s early morning arbitrary thoughts… Well, it’s 3:30 in the morning and I have been awake for an hour now. Brady had rolled over and the IV pump sounded. I tried to get to him in time to fix the kink but apparently I was too slow getting out of bed. So, the alarm get’s louder and beeps faster and a nurse now has to be called in to shut it off. Meanwhile, Brady still sleeps. The room seems hot and my sinuses are all congested. I wonder if a nurse or tech turned the heat up because Brady tends to throw his blankets off of himself. I go to the thermostat and make it colder in here. For those that know me, you must truly think that I am insane at this point because I am always looking to get warmer. Well, I wear thermal pj’s and lots of blankets in the hospital because we were told that if the room is cooler the babies tend to get fewer fevers. Right now, that is our goal, no fevers. I’m tempted to call Michael because I’m awake and I miss him. I check my phone. Was it to verify the time or to see if by chance I missed a phone call or a text message? Probably both I suppose. Yesterday was Michael’s turn not to be able to sleep, even though he was home. He got up at 3am, showered, and headed off to work. When I asked him, “why so early?” he said “because I had things to take care of”. Okay, seems logical enough. Brady and I had a really great day. In the later part of the afternoon my mom watched Brady and I went to the hospital resource center. I figured out where our insurance would allow him to go for a bone marrow transplant. This actually took quite a bit of time as insurance companies make nothing easy! It turns out that even though I was told yesterday on the phone that Seattle was not an option, they were on the computer list. Hum, need to investigate a bit more in the morning. Anyhow, Brady had a platelet transfusion in the morning because he was bruising quite easily and his counts were low. Thank you to the anonymous donor at the Trenton blood blank for this round of blood. Most of the time the blood comes from the RWJ blood center. But sometimes, when they run short, they get the blood from other areas. Last week Brady had a pint from Lancaster, PA. From morning until night Brady drank lots of bottles of Pediasure, a calorie supplement that he enjoys. He did not eat much solid food but that’s okay. Michael got to the hospital close to 8pm and I really did not want a big meal at that point. So, we raided the “pantry” and ate an apple, chips, salsa, and cookies. It was a lot of fun watching Brady taking an Oreo apart to lick the cream off and throw the cookie part away! Yummy! The tech just came in to do his 4am vitals a little early. His blood pressure is low, 77/29. She takes it again, 75/28. YIKES! Okay, a third time. Now Brady lets out a little cry. Not of one of pain, more of a “leave me alone I’m trying to sleep”. Normal. 91/55, now that’s a decent reading. Now it’s time for a temperature check. I hold my breath. No fever, 97.3 degrees, what a relief. The tech even manages to change his diaper without waking him. The diapers I buy are supposed to last overnight but because of the amount of IV fluid being pushed through him, he needs to be changed every hour or two. They have been great here about doing this for me at night, and I really appreciate it. Well, I am going to post this and try to head back to bed. I need to get my sleep when he sleeps! I hope everyone has a great day. Hugs from Brady…by Michael Wells Our son Brady is doing just great. He has not had a fever, his blood pressure is normal as his blood count continues to diminish. This is exactly what everyone here is expecting and so far everyone is pleased with his progress. However, Sherrie and me are trying to ascertain where do we go from here; bone marrow transplant or not? It appears as we continue our vetting process that stem cell transplantation is our most likely path. Sherrie has reached out to Dr. Jean Sanders the Director of Pediatric Clinical Hematopoietic Cell Transplantation at the Seattle Cancer Care Alliance (SCCA). SCCA is one of the leaders in the field of pediatric bone marrow transplants and Dr. Sanders is one of the foremost specialists in the world. Dr. Sanders unlike Dr. Nancy Bunin of The Children’s Hospital of Philadelphia (CHOP) flat out told us for Brady’s cancer not only is a transplant necessary but it should be combined with full body radiation. She told us leukemia with an inverted C16 chromosome is very unique and very serious. She also went on to tell us that if Brady’s cancer is not in remission his success rate even with a transplant and radiation treatment would be around 15%. With full body radiation comes a whole host of long term problems; starting with growth issues, potential damage and cancer to other major organs. We are at our wits end over this! I think tonight was the closest we came to having a full blown argument purely based on displaced anger, stress and total frustration. I snapped at Sherrie and she returned my pleasantries. Our baby is sick and there is nothing either of us can do to make him better. I truly hate this *#$@#@ disease. If this were a TV drama we would be going to a commercial but this is real life and right now it’s a bit difficult. So, we wait and continue with our consults; next up Children’s Hospital of Boston. After our consults the only other event will be the results of the next bone marrow biopsy. The results are extremely important as they will hopefully clarify our course of action and our probability of success. January cannot get here fast enough. Until then our son is as playful, loving and wonderful as you can possibly imagine. Right now he is bouncing around his crib fighting sleep and putting everything in his mouth as he is teething once again. I’m going to see if I can get him to sleep; so once again please keep Brady in your prayers, hugs and thoughts. If you have any “left-overs” maybe you could give Sherrie and me some as well… PS Sherrie and I (of course) made-up and she left for home and a chance to sleep in her own bed. Sweet dreams my lover…
“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.