I had meant to give a little update before we even left Hastings for Michigan, but it just didn’t happen. I was busy that evening running errands and packing. Jeffrey called from his friends’ house that he had planned to stay over for the night, but I got a call to come pick him up at 11:00 that night. He wanted to come home. When I asked him why he said he wanted to see us before we left. I picked him up and then both he and Michael were up late with me talking about really nothing. I gave up on attempting to journal and went to bed.
I know we are all a little nervous. Earlier in the day I talked with all three of the boys (separately) about why we are going. Both Jeffrey and Michael know it is to enroll Mikko in the DFMO study, but we talked about why Jon and I feel it necessary to do it and that hopefully it improves the odds of the cancer not coming back. When I attempted to at to Mikko, he gave me a grumpy, “I know Mom!” and I decided to end the conversation for the time. It’s a lot of all of them.
After the hospital had told us that siblings are not allowed to come to the appointments we decided to leave the kids at home rather than in a hotel room unattended. So the three of us hit the road on Tuesday morning. A friend loaned us her ipass card that allowed us to drive through the toll booths around Chicago (8 of them), saving us time. The trip took a little over 9 hours and it wasn’t bad. Mikko didn’t sleep a wink that entire time. He watched a few movies, played on the iPad, and kept his eyes peeled for yellow cars.
We got to our hotel around 6 pm. When we pulled up Mikko was surprised we were parking our own car and when he peeked out our room window he cupped his hands together and “booed”. I guess the parking lot view stinks in comparison to the beautiful ocean front view from our last hotel stay! 🙂 I told you we were spoiled by Make A Wish!
This morning we woke up ate, a quick breakfast and headed to Helen DeVos Children’s Hospital. What a beautiful facility that is! It opened on 1-1-11 and it is pretty amazing. The pictures of Mikko are from there. Jon and I were very pleased with everyone we met today, even the audiologist! ( She even looked in Jon’s ears! 🙂 Tomorrow Mikko will be sedated for scans and bone marrow biopsies and then we will meet with Dr. Sholler. We didn’t meet her yet today and I’m looking forward to it. Parents from all over the world bring their children to receive treatment under Dr. Sholler’s care.
Today was the easy day for Jon and Me. Nothing too scary today….all of Mikko’s blood counts were great. He was a trooper through the IV placement and it took 2 tries. He loved the playroom and continued his new love of snapping his own pictures. Tomorrow will be more stressful for us.scans in the morning and results around lunch time. Could the bone marrow results be back so soon?! Our guts tell us the results will be clear, but there is always that fear. It isn’t called scan-anxiety for nothing!
We have absolutely nothing to complain about. While we are at this hospital for a positive reason (our son is NED (power of positive thinking …right?!) and hopefully will start taking medication tomorrow that will keep the nasty crap away. At the same time there are 2 families I’ve been following that are in the same hospital fighting for their children’s lives. Both had been NED..Both are around the same age as Mikko….Both families are living the nightmare of stage 4 high-risk Neuroblastoma. Christopher and Brooke are in need of prayers from Team John.
Tomorrow afternoon we will begin the trip home, stopping somewhere along the way for the night. Hopefully we will have a 3 month supply of DFMO with us.
Thank you for your endless love and support as we continue on this crazy journey we call life.
We keep on keeping on!
Love, Hope & Blessings,