Yes…it is here, the night before my returning to work. How am I feeling? Relieved and excited to be looking forward to beginning a much more normal school year than last year (Knock on Wood, fingers crossed, salt over the shoulder.(.is there such a thing?). I’m excited to work with my first grade team and be a contributing team member. They have taken such good care of me and I am so grateful for them.
It has been a busy week here. All three boys stated hockey and they have it 2 times a week. It was nice to see that John is physically much stronger than when he skated towards the end of last season. He has expressed a little frustration with some of the drills and coming in toward the back of the pack. He likes to be first. He had one station today where they were playing a little 3 on 3 game. I noticed that one of the boys was making a point to trip the other kids with his stick. He made the mistake of tripping John. He was knocked down and the hockey stick started swinging in attempt to get the kid back. No Luck. He got up ran that kid down and cross checked the tripper with his hockey stick (Which totally would be legal in a high school lacrosse game….not so much in a mite hockey skills clinic.). Of course we talked about it….I hope the kid doesn’t trip him again! We have been working in on toning down the feisty spirit just a tad.
On Wednesday I took John to Minneapolis for his weekly physical therapy session. I was thrilled to learn that his flex in his ankles improved from 10 to 12 on one and from 8 to 11 on the other. We continue to work towards the goal of 15 – 20. Skating should help his ankles.
After physical therapy we stopped by the Star Studio in the hospital. This is where they broadcast the kids clubhouse shows for both Minneapolis and St. Paul Children’s hospitals. John spent a lot of time enjoying these shows (playing bingo, calling in to the show to answer questions) when he was a patient. On this day he got to sit in the audience. The Dude (the host of the show) was excited to see John and told him he’d been waiting to give him something special. He had a hockey puck signed by the WIld mascot Nordy and by Brad Bombardir. John was so excited! The Dude also gave John a WWE wrestling guy. We stayed and watched the whole show. They do a daily poll between 2 different things. It could be songs, shows….on this day it was characters. “Who do you like best The Cat in the Hat or Curious George?”. John and I just looked at each other like, “Oh George!” Still no word or signs of John’s beloved Curious George. He is handling it well. Tomorrow I am going to try and get a hold of the Child Life Specialist that worked with John in Michigan see if she’s seen him.
Today was the last day for Hastings pool to be open. John and I went one last time. The two of us have spent a lot of hours together there. Today we both hit all of the slides several times. We went fro that pool over to our friend Jodi’s pool for even more fun. Perfect fun for a hot day.
I have special prayer requests that are needed from Team John. One is for a Lilah who is 14 months old and was just diagnosed in July with stage IV Neuroblastoma. Jon and I know too well what her parents are experiencing right now. We pray her little body responds to treatment as well as John’s did.
The other prayer request is for Christopher and his family. I learned the other day that there is nothing further that can be done for Christopher. His family flew him from Michigan home to Vermont. Tomorrow on what should be his first day of second grade….Christopher begins Hospice care. His mother Kristen has been so strong. They have fought like crazy, traveled to many places, sought after the best of the best in doctors….they did everything they possibly could for their son. I am absolutely heartbroken for this family.
I haven’t followed too many children with neuroblastoma. There are just too many sad outcomes and when I read them, they put me in a deep funk. I found Christopher’s site and I was drawn to his mom and how she wrote from the heart. If she was furious she wrote it. If she was happy…she wrote it. She is a fighter and come hell or high water…she was going to go anywhere and do anything to save her son. And she did everything she possibly could. I hope she can find a little peace in knowing that. We started corresponding via email and it was from Kristen that I learned of the hope of DFMO. It was she that encouraged me to look into it and Dr. Sholler.
Huge prayers for comfort and peace.
Each and every day is a gift.
Love, Hope and Blessings,