03/05/2010
by Michael Wells Our “Typical” Day… Michael and Brady are up at the crack of dawn. They start a pot of coffee and get the table ready for breakfast (Brady gets the filter and puts it in). Around 6am Brady will come and get me up to join them, he’s very persuasive when he says “ma ma”. We relax, look out into our snow covered backyard and enjoy our morning together. Brady likes licking the jelly off of the toast. Then Michael is off to work around 6:30 as Brady and I stand at the door and wave goodbye to “da da”. It’s now back to the leukemia business. After breakfast, Brady takes 2 or 3 oral medicines, depending on the day. He is so cute and so good about this. He sits on the kitchen floor, says “medicine”, and opens his mouth for me. Then we go to his changing table to inspect the dressing site and to flush his lines with saline and heparin. He now enjoys pushing the medicines into his catheter lines to help me and he is also is great with the preliminary cleaning of the caps with alcohol wipes. We do a quick change out of his pajamas, a clean diaper, and okay, it’s play time. Our energizer bunny now has the run of the house, all of his toys, stuffed animals, balls, books, and his hideaway tent. I really can not do too much productive work because with Brady being a typical toddler, he’s always under my feet trying to “help”. Mr. Curiosity should be his new name as he does not miss a beat and is into everything. When it’s time for lunch Brady let’s me know by signing “eat” and by saying “breakfast”. Time concept is tough to teach! He eats almost whatever you put in front of him. His appetite has really shown significant improvement since we have been home. Grandma is here by now to “Brady sit” so we all have lunch together. Brady’s favorites are; cheese, grape tomatoes, yogurt bites, and whatever we are eating/drinking! Play time again! Brady loves to read his books, watch Baby Einstein DVD’s, and play with all of his numerous toys. He is just a playful, happy, fun, and loving boy. He tires himself out by the time afternoon rolls around and falls asleep in front of the TV with his bottle. He could nap for one or two hours, just depends on the day. When he wakes up, he is re-energized! We try to wait for Michael to come home to have dinner as a family. Some nights are tough though. After Brady eats, it’s time for his nighttime medicines. Last night Michael fed Brady ice cream some time after 9pm when he got home from work and then ate his own dinner at 10pm. We just want to spend every possible moment together. I have mentioned in the past that we have a “no crying” rule for everyone when they are around Brady. Well, last night, it took all that was in Michael not to break that rule. Brady looked at his daddy and said “I love you”. Michael hugged him and said “I love you too Brady”. Then Michael walked into the kitchen, where the “pollen” seems to be worse, and wiped his eyes dry. It was a very touching moment. Brady then had a bottle (with a powdered medicine in it) while lying in my arms and fell fast asleep. Michael put him in his crib and Brady then slept through the night. Now that is a beautiful day… What we have been doing in our spare time… Of course, it never quite seems to be this serene as life has a tendency of throwing some curve balls at you. We have been interviewing painters to paint the inside our home while we are at CHOP. This way, everything will be clean of any potential dirt, bacteria, and mold when Brady comes home. I had the plumber stop by to fix our kitchen faucet. Three times now, in the past two weeks, a repair person has been out to fix my washing machine. The engine was replaced yesterday but we are still waiting on two computer board parts to come in. But at least now I can catch up on my laundry! Michael has been looking into getting an apartment for my mom and me to stay at because we think that the Ronald McDonald House is going to be full. UGH! This just throws a huge monkey wrench into our “perfect” plan. It means renting on a monthly basis, taking taxis or shuttle buses, and staying alone. We will know Monday at 10am if the Ronald McDonald House has any availability. In the meantime, I keep telling myself not to sweat the small stuff. And, in the scheme of things, this is miniscule. I have been attempting to pack. We already have emergency bags packed and in the car just in case Brady spikes a fever and we have to go to the emergency room (I am in the habit of kissing his forehead on a regular basis to confirm his temperature). However, packing for CHOP seems to be more difficult. Every time I try, I stop. I wonder if I avoid packing, can Brady just not go then. Hmmm… On the medical side of the equation… Yesterday my mom helped hold Brady down while I changed his dressing over his broviac catheter. This is a somewhat easy process as long as your patient stays still! Today she kept him occupied while I changed the caps at the ends where the medications go in. On a daily basis we flush his lines to make sure that they are working properly and to avoid having any blood clots form. Michael and I had a one hour “preparations consult” with CHOP one evening this week; the days are all a blur to me. And once again, they scared us so bad with the hard facts. Every time they talk to us they go into more detail as to what we can expect. I guess they do this gradually so that the parents don’t have nervous breakdowns. Needless to say, when Brady went to sleep, we had some wine. I won’t go into any detail as they are just too horrific. So, to sum things up, we have a lot going on right now. So, if we don’t call or write, please understand, we’re just running on autopilot at this point. Michael is putting in a lot of hours from home for his job and I am trying to keep up with a baby that has so much energy! We are physically and emotionally drained. Our fun Goal… It would be really nice to have every person that reads this to sign Brady’s guestbook before the weekend ends. We would be grateful for anything you have to say! Also, I wonder if we will reach 10,000 visits before then as well? Belated Thank you… Aunt Peggy, your cookies were scrumptious and finished before I could zip up the ziplock! Aunt Shirley, the stuffed shells were just delicious! Brady liked his special chicken sandwiches. We plan on having your home made pot pies for dinner tonight, yummy!“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.