06/11/2010
by Michael Wells Yesterday, Brady’s blood counts continued to diminish. He is extremely neutropenic and I never thought I’d be saying I couldn’t be happier. You see, the very first step in Brady recovery must be the destruction of all his bone marrow blood cells. The chemo must kill all his red, white and platelets which in turn hopefully mean his cancer will be placed in remission. So, Brady becoming extremely neutropenic (Neutropenia is an abnormally low level of neutrophils in the blood.) is a positive step in his recovery. Yesterday also brought us a little bit of “hospital” humor. Brady’s for the past several days was let’s say “backed-up”. Well, last night while sitting in his high chair and having a prayer said to him by Reverend Maltby (a life long friend of Sherrie’s family) he literally exploded and I do mean exploded. I never thought a baby could have a projectile vowel movement but Brady managed to get this “stuff” over half the room. Now granted I did have a choice, I could have waited for Housekeeping to clean up this mess or I could have helped Sherrie with Brady. Well, I chose the “manly” job of cleaning and after 2 complete tubs of disinfectant wipes, a half dozen towels and nearly vomiting several times I got things cleaned. What a mess, but Brady as he sat with a smile on his face, sure felt better. On a much more serene side of hospital life; we are now once again going for our evening wagon rides. Brady really loves to get out of his room and he is so weak and hooked up to so many pumps the only practical way is with his wagon. Well, on our way back to his room, we stopped outside the hematology/oncology unit and sat for a while. The unit is located on the 2nd floor and from the elevator to the unit’s entry you walk along a balcony which faces the main entry of the children’s hospital. The front wall of the main entry is constructed entirely of glass and faces west. We just sat there and almost simultaneously, Sherrie and I looked at one and other and said, “Isn’t this nice”. It was a moment of peace, a moment of calm, a moment of almost normality. It was as if we were home, sitting on our patio after one of our nightly walks; it was beautiful… Now back to reality; with Brady’s neutropenia comes the significant risk of infections of all sorts and to make things worse this time he appears to be in more pain than ever before so he is on a morphine drip and we are very quick to administer a bolus when necessary. He is sleeping most of the day and appears to be getting weaker as each day passes. Make no mistake, our baby is critically ill. Brady, more than ever, continues to need all your prayers, hugs and good karma. I am tremendously confident Brady will beat this disease and lead a meaningful life but right now he will take all the help you can give him. Please continue your efforts and one day you can say you were part of a miracle.Where to begin? Friday has turned out to be another day of waiting for blood testing results, and just waiting in general. Brady’s blood counts are all headed in the right direction and this is a very, very good sign. We are cautiously optimistic about the results and hope they continue until June 23rd the scheduled date for Brady’s next bone marrow test. Brady is in virtual pain as leukemia has the nasty effect of making a person’s body feel sore all over. However, he is now able to tell us when he hurts and this while it is extremely cute to hear him say, “boo boo” is also extremely important to let us know when to give him a bolus of morphine to ease his pain. A bit of somber news today; Christian (a 15 year old boy) passed away. He had a rare form of rhabdomyosarcoma a cancer that forms in the soft tissues in a type of muscle called striated muscle. Rhabdomyosarcoma can occur anywhere in the body. In Christian’s case the cancer manifested itself into inoperable brain tumors. We met Christian in the fall and he became a friend of Brady and his dad Ray became a friend of mine. Sherrie and I mourn his loss. Brittany a Pediatric Care Technician who works on the 5th floor and met Brady the very first week he was here, continues to amaze us. Recently, Brittany ran a half marathon in honor of Brady and now she is sponsoring a SUPER 50/50 Raffle. She does this in her spare time and somehow managed to get accepted to Med School. She will make an excellent doctor and we are just overwhelmingly proud to call her our friend. If you want to participate in the raffle, here’s what Brittany posted on Facebook: Hugs For Brady SUPER 50/50 Date: Saturday, August 21, 2010 Time: 12:00pm – 12:30pm Description It is the perfect time of year for a 50/50. This summer, we are raising money for the HUGS FOR BRADY foundation with a SUPER 50/50. The winner will be drawn on August 21, 2010 – Brady’s 2nd Birthday! Tickets will be sold for the following prices: ticket – 1 dollar 3 tickets – 2 dollars 20 tickets – 5 dollars if you would like to buy tickets, but won’t see me before 8.21.10, please e-mail [link removed] and I can tell you where to send money and who to make the checks out to *HUGS FOR BRADY is a foundation started in honor of Brady Michael Wells who is battling BAL (Biphenotypic Acute Leukemia). All of the money raised by the foundation will be used for treating and curing pediatric cancers* Finally, Donna, Brady’s Nurse Practitioner just left for the week-end and told us to make sure we were still here come Monday. She also instructed us to tell Dr. Drachtman (who is on-call this week end) not to “break” Brady. One last thought, prayers, hugs and good thoughts are working a miracle; pass the word to all your family members, friends, coworkers and neighbors there is still time to become a part of the Brady Miracle. All they have to do is pray, think good thoughts or hug someone in Brady’s honor.
“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.