by Michael Wells
It’s after 2:00am and what a surprise, I can’t sleep. Brady’s temperature just hit 103.4° and I just gave him some Tylenol. It’s extremely difficult to stay off what my sister Kathy calls, “the pity potty” as all I can think of is: WHY?
We had 72 days of Brady in his most wondrous glory. He is just an absolutely amazing child; bright, personable, loving, and quick; way beyond his age. His mannerisms are just endearing. He says “thank you” and “please” at the appropriate times. In fact, to add impact, he will also “sign” the word “please” as he speaks it. We actually had to start spelling words such as “walk” because if we said that word a loud, Brady would respond with “shoes” and be off to get his shoes and insist on going for a walk. He started learning the few French words I know and his sign language skills continue to flourish. The French I am responsible for, the signing it’s all Brady and Baby Einstein videos.
He is my shadow! I cannot go to the bathroom, I cannot work in the yard, and I cannot take a shower without him at my side. He has to (wants to) participate in everything I do. On Sunday mornings he insists on having his high chair moved into the kitchen to help me cook breakfast and he will get very upset with you if he is not allowed to put the coffee filter into the coffee maker. I don’t mean to sound braggadocios but he is just a remarkable baby who deserves a shot at life.
During our many walks, Brady started to learn our neighbors’ names. He could say; Tony, Miss Alice, Mr. & Mrs. Pagan, Aunt Ellen & Uncle Frank as well as the names of virtually every dog insight. I will miss our walks more than imaginable.
Nurse Mary just came into our room and told me to go to bed. More accurately sternly instructed me to get some sleep. Right now sleep is not a very high priority. Sherrie went home tonight with her parents; she needs to pack our “long term stay” supplies. Brady’s Grandparents’ Jan & Gary (as you would expect) took the news very hard. I had my sister Doreen inform my 91 year old Mom and I am not looking forward to talking with her later today.
I don’t know what to say. The odds are so awful; the path ahead is so long and treacherous with no guarantees of the outcome, it’s really difficult not to go to “the pity potty.” That said, I will try my best to keep this journal focused on Brady for it is he who will be enduring the pain, it’s just so difficult to watch.
Until next time, anything that can help our baby is more than appreciated. Prayers, hugs and good thoughts are always welcomed but a donation to any pediatric group to find a cure is the absolute BEST way to honor Brady.
It’s been a rather tough Saturday. Brady continues to spike fevers (101 – 102.5) and his blood count has headed into transfusion range. He’s currently sleeping and he has just not been our Brady. He is now receiving morphine (intravenously) and we do not need to have a clock to know when it’s time for another dose. This disease has accelerated at a pace which is just mind-boggling. Brady has been in and out of pain all day. He is battling his leukemia and the Roseola virus. Roseola is an acute disease of infants and young children in which a high fever and skin rash occurs.
It’s overwhelming to see our baby go from what apparently seemed to be a healthy child to his current condition. He is just so ill, all he does when he is awake is call; “Mama, Mama” over and over again. It’s just heartbreaking to see your baby in such distress and not be able to do anything but hold him.
Brady is as sick as we have ever seen him. He will be getting a blood transfusion tonight. Well, Brady just woke up and I need to help Sherrie attend to him. I’ll write again soon…
“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.