Weak Ankles and DFMO

This morning John and I were up bright and early to head to Children’s Minneapolis for his physical therapy appointment. Somehow we managed to be 25 minutes early, which is really almost a miracle. We hung out in the truck and then with 10 minutes before his scheduled appointment we headed into the building. I shut the door hit lock and my cell phone rang. It was a call from Michigan that sent me scrambling for paper and a pen…we ended up 5 minutes late. (More on the Michigan phone call a little later.)

The physical therapist at Children’s do such a nice job with John. They do such a great job of engaging him in the fun activities that will hopefully improve his ankle strength. Today the flex in his ankles (I’m sure that’s not the medical term for it!) was measured again and it is the same as a few weeks ago. One foot was an 8 and the other a 10. Again these numbers mean little to me. So I asked ideally where she would like that number to be. 15 – 20  Yikes! Chemo did do a number on his ankles and we need to be more diligent about doing the home exercises! John is doing so well..to us he seems almost completely back to how he was before the terrible diagnosis of Neuroblastoma, that it’s easy to think he’s doing great. He is doing great, but there is still work to do and when that little stinker says no to his exercises we need to keep saying yes.

I had mentioned to John’s physical therapist that John wanted to go roller blading and she told us that would be a great activity for his ankles. John couldn’t wait to lace up his blades this evening in the driveway. It has been almost a year and a half since he’s rollerbladed and the first few minutes were very frustrating. John wanted to “crossover” like with his hockey skates, he couldn’t stop, the ball kept rolling down the drive way, he couldn’t shoot the ball in pocket of the shooting tarp. Ugh! It was kind of a disaster and I was sad for John, but then he calmed down and started to relax a little.

While he was skating I was going through some things I had in the garage. I moved my school things to the truck to drop off at school and then I decided to wash the wagon our friends had loaned to us last summer. When John was done skating and went inside to hang out with Jeffrey I decide to walk the wagon over to our friend’s house. As I pulled that wagon by the handle and felt the bum-pity bump of pulling it my memory quickly flashed back to last summer. Last summer when John’s little body was beaten down from chemotherapy when he was terribly weak and nauseous. He wanted nothing to do with going outside or for a ride or getting off of the couch for that matter. I had to coax him with just a short walk down the street. I placed a blanket in the bottom of the wagon to cushion his skinny little rear, a pillow for him to lean on, and a cap to shade him from the sun. That was a very sad first wagon ride for us both, (We also had many good rides later in the summer.) but what a difference a year makes! There are no hints of that terribly sick, sick little boy around our house this summer! We are so blessed and Jon and I are reminded daily by the noisy house we live in. 🙂

Michigan….As of today the plan is for us to be there on Wednesday and Thursday next week for appointments (injection for scans, audiology test (I’m interested to see how this goes with a different audiologist.), bone marrow biopsies, CT and MIBG scans. On Thursday afternoon we will get the results of the tests and if they come back with John still being NED (No Evidence of Disease) he will be given his first dose of DFMO that day and then we are sent on our way.

How am I feeling?

Relief – that there is a plan and that John will be starting the study next week

Anxiety – that people (I’m sure are skilled and wonderful) other that the doctors and nurses we’ve grown to love and  trust will be doing the bone marrow biopsies. Will they be gentle with my little buddy? Of course they will…but I worry.

Scanxiety – Here we go! The biggest worry for all of us parents with NED kids going in for scans. We have every reason to believe that John is still NED, but in the back of my mind there’s that annoying voice reminding me that our life can change in a heartbeat.

Then this afternoon we received word that the DFMO study should be up and running by the end of September. I got out the calendar and counted out 120 days from John’s last treatment (After 120 days he is no longer eligible for the study.) and it brings me right to the end of September as well. We would love to be able to just do it all at Children’s, but what if the study at Children’s gets delayed and he can’t begin…then we miss our window of opportunity. To Michigan we will go and hopefully only once and then Children’s Minneapolis will be up and running.

Months and months ago one of John’s doctors had given me the contact information of a mother who’s son was currently enrolled in the DFMO study. I finally called her last week and we met this past Monday with the boys. She was able to share her son’s story and their experience with the DFMO (No side effects for her son!) study. They have had to travel from Minneapolis to Michigan every 3 months this past year. She is also anxiously awaiting Children’s Minneapolis to open the study. I’m so glad we were able to meet and talk and talk!

Oh! I forgot to mention that John has now went off the diving board at the pool and the shoot slide! He’s so proud…no life jacket!

We keep on keeping on!

Love, Hope & Blessings,

Shelly

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