12/09/2009
by Michael Wells It’s around 2:00am and I can’t sleep. Brady had a simply tremendous day. While he needed a blood transfusion his overall health is excellent and his temperature remains normal. The blood transfusions are getting to be a matter-of-factual event in his life which is something I don’t think 2 months ago I could have ever imagined. After his completed his transfusion, he was disconnected from his saline drip lines, pumps and all the other hardware he’s hooked up to and allowed to run free. It also allowed Sherrie and me to attend what we are calling “an adult off-site parental conference.” Before you all get the wrong idea, we walk into town (New Brunswick) and had a cocktail while Sherrie’s Mom tended to Brady. We’ve done this a couple of times and it is truly a much needed break. New Brunswick is an interesting city; anchored by the headquarters of J&J and the Rutgers University it manages to survive and in some areas actually flourish. The downtown area is only a couple of blocks away from the hospital and it was a nice brisk walk to a local restaurant for an hour’s break and I think a well deserved cocktail. We returned to Brady still running around the toy room having a blast. After saying goodnight to his Grandparents we returned to his room and played on his make-shift trampoline (Sherrie’s Aero Mattress) where continued to have the energy of a nuclear reactor. Running, jumping and being tickled as he laughed and laughed; as I said it was a tremendous day. Around 7:30pm Brady started saying Ma-ma Ba-ba which translated means he would like his Mom to get him a bottle. It was just beautiful to watch him lay next to Sherrie holding his bottle as he fell asleep. By 8:00pm our wonderful, exhausted and very happy baby was fast asleep. Sherrie and I ate the remainder of Brady’s dinner and I left the hospital well before 9:00pm; it was a wonderful day. So, why in the hell am I awake at 2:00am? Dr. Nancy Bunin from the transplant team at Children’s Hospital of Philadelphia (CHOP) still has not finalized her analysis of Brady’s bone marrow biopsy. While she has been in almost daily contact with us she is still awaiting additional information from the pathology department at Robert Wood Johnson University Hospital but the bottom line is: “Brady’s case is complicated and unique.” This is what is causing me to lose sleep. I want “simple and ordinary” not complicated and unique. I have ranted in several journal entries how much I hate this disease and believe me I do. It is extremely frustrating to be so helpless to sit by and watch your child suffer as Brady has. But perhaps I can do a little something. Tonight when I came home I turned on my TV and watched a couple minutes of some college basketball game on ESPN. It was the Jimmy V tournament for cancer research. Well, it sort of dawned on me as Sherrie said yesterday: “Please help the Leukemia and Lymphoma Society find a cure for this horrible disease.” Understand, I am somewhat of a cynical person and I cannot stand Jerry Lewis type “betatrons” but I think my feelings are changing. Having seen this disease my new battle cry is: Donate, Donate, Donate! This horrible thing must be stopped for no child deserves to ever experience it. One less Christmas present, $5.00, or do what my coworker Anna (and her husband Pete) is doing; donate a pint of blood. Anything you can do to help will not only help find a cure, it will help me feel like I’m doing “something” to help Brady. Donate to whatever organization you prefer, do whatever you can do but PLEASE do something! Help Sherrie and me make some sense out of this… Until next time; your prayers, thoughts and hugs continue to work so please continue to keep Brady in them…I remember when I was in the Navy aboard the USS Shangri-La CVA38 standing watch on the bridge in the middle of the night and the captain would come out of his quarters and his marine guard would shout; “Captain’s on the bridge.” This was immediately followed by the captain shouting; “I have the con.” Well, I may only be the First Mate of the USS Goodship Wells but tonight I do indeed have the con! And tonight our ship is sailing smoothly across a tranquil sea. Brady is doing just wonderful: normal temperature & blood pressure, no vomiting or diarrhea. He was once again let off his leash of mechanical crap and was able to play, run, laugh and explore like a “normal” toddler. It’s fun to see him developing into a little boy. I just called Sherrie to say good night and Brady grabbed the phone and said “hi” and started blowing kisses. As I said, it’s just wonderful to watch him develop. Speaking of developments; we still no word from CHOP regarding Brady’s bone marrow testing. This is getting to be incredibly frustrating. Hopefully, by the end of the week we will have some numbers to digest. Thank You’s: please forgive us if we fail to mention everyone but here are a few people we would like to single out: Thank you to Christine Van Beveren for your donation to the Leukemia & Lymphoma Society’s (LLS) Team in Training. Brittany has now received 12% of her goal amount! Thank you to Mrs. Jill Calandruccio for the Caring Bridge donation and for writing the sweetest note: “In honor of the most beautiful little boy, Brady.” Thank you to Nancy at RU for the bubble machine. Brady is going to love it! Thank you to a sweet woman from Las Vegas who gave Brady a handmade fabric book, its great! Thank you to everyone who has passed along Brady’s story to others and have had church masses said in his name. Thank you for logging in to read Brady’s journal almost 3,500 times! And a special thank you for those of you who have now signed Brady’s guestbook 225 times! Finally; please, instead of sending us a Christmas card, sign the guestbook. I know for some people this is an emotionally difficult task. But, good news! It can be anything you want; short, long, serious, funny, witty, or just your name! We look forward to reading the entries every evening when I get to the hospital. We would really love to hear from you! Until next time; the First Mate is about to call it a night in hopes the smooth sailing continues. So enough of the old seafarer metaphors; PLEASE continue to keep our son in your prayers, thoughts and hugs! And while you’re at it, donate a pint of blood!
*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.