Sorry I haven’t sent an update in the past week. I just needed a break from my so called blogworthy life and unplug from the digital matrix inclusive of work, emails, phone calls, facebook, my blog, etc. and just enjoy some time with my family to be frank, just in case…
My vacation time has been spent at hospitals this year and this past week was the last time that we were able to spend some time together prior to Coleson’s admittance to the hospital. Amongst, X-rays, EKGs, Echos, consults and the rest, we sprinkled in a trip to the mall of America, some pool time, some walks around a nearby lake, and some play time at a park nicknamed “Chutes and Ladders” for the numerous rope walls, slides, tunnels, etc.. The weather has been beautiful our entire trip; we were fortunate to leave AZ just before the record breaking heat. Our drive here wasn’t as bad as one would think. We ended our road trip with a stop in Clear Lake, Iowa and were fortunate to stumble upon a lake and park which reminded me of Grand Haven for you Michiganders. We stopped for 2 hrs to enjoy the sun and the beach and some live music in the park. We have not gotten into the RMH yet and looks like there is a bit of a wait list so we are staying at a hotel about 10 miles from the hospital. We did stop there one night for dinner to meet up with another Hurler family that was in town for a 2-year checkup and to discuss participation in a new trial for post-BMT ERT. It was really beneficial to meet another family and it gave us hope and inspiration. I have been communicating with the father since receiving the diagnosis and he has been very helpful.
We got the green light to proceed with the BMT and we signed the consent forms but not before we were told no less than 3 times of the risks, possible complications, side effects, and review all the drugs: Immunosuppressant, chemo, anti-nausea, antibiotics, antihistamines, antiseizure and pain reliever (do you think he might need this last one!). I’m sure I’m forgetting some. The doctors said something that really resonated with me about BMTs for Hurlers kids. It’s different than other BMTs as Hurler kids appear “Healthy” and you purposefully make them sick in order to make them better, whereas most BMTs the kids are already sick. Not that either situation is easy but it is difficult to think we are purposefully giving a “healthy” child chemo. Don’t get me wrong, we don’t really have a choice it’s just hard to think that in just 2 days he will go from being a vibrant little boy to a very sick one.
Lastly I turned a year older yesterday. It wasn’t the best birthday I’ve had but we did have lunch at my close grad school friend, Nicole’s house and Peyton got to play with her 2 girls. She even got me a birthday cookie. Then we had to drop Peyton and Grandma off at the airport and I had to say goodbye to my little girl for 2-3 weeks until they return before BMT day. I missed her instantly and don’t know how I will make it for that long of time with her. Not to mention having Grandma around was nice too. She takes good care of us.
Lastly if you are still reading this we has some excitement at the hotel last night. We had some noisy neighbors right below us for several nights and after getting a glance at them and their decked out hummer with gold bling we were convinced they were dealers… and not the blackjack kind! Well, after I awoke at 1:00am to the sounds of yelling and up and down the stairwell right beside us I hear a police bullhorn say “Put your hands up and get out of the car”. We witnessed the arrest of 6 people and saw the cops pull some baggies (white not green) and guns out of the hummer. We are not in a bad part of town or a bad hotel but I guess they have the money to stay in nice places! Needless to say, I hope next year’s birthday is a lot better. In fact, I could use a much better year!