by Michael Wells
It’s Saturday morning (early) in the “Man-Cave” and thanks to all of your actions Brady is sleeping like the beautiful baby he is. The Rituximab drug was administered yesterday and other than a vomiting episode last night Brady is doing as well as can be expected. I think his vomiting was more to do with me than that nasty drug; he more times than not has hurled on me! I wonder if there is a (not so) subconscious message going on here???
Sherrie and Grandma are home for the week-end. Anyone in the Franklin Park / Kendall Park area please feel free to drop by and say hell-o to 2 of the most “wonderful” women I know. You should stay for lunch or dinner or maybe even borrow some money; tell them I said it’s payback for their laughter regarding Brady’s nurse they’ll understand. Inside joke – no more details!
Anyway; we are getting to Day +8 and we could start to see some white cell development as early as Sunday or Monday. I think Palm Sunday would be a very appropriate day for Brady to start showing positive results from his transplant. So far he is proceeding exacting as expected and with each plus-day I get more and more anxious. Hopefully, by Easter Sunday Brady will be producing enough white cells to no longer be neutropenic.
Once again; my sincere thanks to everyone for all your prayers, good thoughts and hugs. A very special thank you to everyone who signs the guest book; your messages, prayers, kindness and humor have enabled us to tolerate this journey; Sherrie and I could not get through this without your support and love; it would just be impossible. Also, thank you Lilly for the delicious cookies; they’re incredible!
Finally; please continue to pray, think good thoughts and hug someone special; they are working wonders…
Saturday morning and a new thing to contend with: nose bleeds. I hate this disease more than ever. It’s just relentless in busting your chops until you just want to scream. Today, Brady has a platelet transfusion scheduled as his platelet count is down to 12,000. So, we’re waiting for platelets and then it’s bath time followed by an hour of play room. Hopefully after play time it will be nap time, we shall see. This is our Saturday morning and all and all it’s really not that bad. I’m with my son Brady, playing with his toys, trying to teach him how to say red, blue and yellow in French. So far, he’s got rouge (red) down cold. It would be a perfect Saturday morning if my other 2 children were here to share in my happiness.
We just got back from the playroom; it’s 12:30pm and it’s been a rather tough morning in the man-cave. My poor Brady is spiking temperatures 100.5° nothing too dramatic except it’s accompanied with intense vomiting and continued nosebleeds. He’s sleeping now and I hope he takes a really long nap as the pollen count in this room is getting just out of control. I just am so infuriated! I hate this disease it’s just so ruthless. I really don’t care WHY just stop hurting him!!!!
1:00pm – Great news! Brady’s temperature has dropped to 97.9°. Hopefully, he was just exhausted from the nosebleeds, platelets, bath, and play time. Anyway, he’s sleeping and the pollen in the room has cleared up. Once again this emotional roller coaster ride continues at its own out of control and unpredictable demonic rate of speed. Pediatric cancer is just the essence of pure unadulterated evil.
Brady woke up from his nap around 3:00pm and he seems to be in good shape. He was sitting in his high chair enjoying a saltine cracker when we had the nicest surprise visitor: Nurse Sue from Bristol Myers Squibb Children’s Hospital. She was in Philadelphia visiting her son and stopped by to see “her boys, Brady and Jimmy.” What a great gesture on her part. While the staff here at CHOP is excellent I personally believe the BMSC hematology / oncology team just sets a standard which is in a class all by themselves. Sue also brought Brady a gift which Sherrie and I are so grateful for; “Butt Paste.” Yes, I know it sounds gross but that’s what it’s called and it’s a special formula that BMSC has come up with and is the only thing that works on Brady to prevent diaper rash. BMSC should patent this, they could make a fortune. Thank you Sue and please say “hi” to the rest of the gang. Great to see you!!!
Brady has been in and out of pain since he awoke from his nap. His nurse Cheryl believes it’s a result of mucositis which is a painful inflammation and ulceration of the mucous membranes lining the digestive tract. This mucositis is a by product of the chemotherapy Brady received. Does anyone wonder why I hate this damn disease? Nurse Cheryl administered a bolus of morphine and it seems to be working. Brady has settled down is watching another episode of Baby Einstein.
Well, the length of this entry is getting out of control; so until next time please continue your prayers, thoughts and hugs for Brady; he needs everyone’s support during this trying time.
“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.