The End of Swim Lessons & the beginning of DFMO

20130718-232408.jpgToday was John’s last day of swim lessons and he successfully passed to the next level(Fist pump for normal childhood victory!). In the picture he is holding his evaluation, certificate and Smarties candy. Fin, as we’ve called him the past 2 weeks, absolutely LOVED going to swim lessons! It was a great way for us to start our days. It is crazy how his confidence in the water has increased in such a short time. This week the 2 of us even spent time in the deep end of the pool. No life jacket!

This afternoon we went back for more pool fun with our friend Maria. While we were there we ran into one of my former students and his cousin whom I’m going to have in class this year. We had fun playing several games of Marco Polo and splashing around. It was a great afternoon for the pool.

Jon and I were commenting the other day how John’s body has healed so well from his surgeries. Most obvious, to me, is the scar and lighter skin from all those months of that hickman bandage on his upper chest. Then there is his scar to the upper left of his belly button. Straight up from his belly button is the initial biopsy scar and then the long horizontal one when the tumor was removed. If you click on the picture it will enlarge and you can get a better view. He’s lookin’ good. ūüôā What is amazing to me is that not one child has asked Jon what his marks are. I would expect it because he runs around the pool without a shirt and kids are honest…saying what they see. He’s been waiting….waiting so he can tell his superman story. You know…deflecting bullets and all that good stuff.

20130718-234200.jpg*Sigh* I went for a MRI of my foot the other day because I’ve continued to limp around even after I was trying ¬†to convince myself I wasn’t and Jon reminded me I was, while the other John did a mom¬†impersonation¬†dragging one foot behind himself…It appears that there is a stress fracture in my foot. B-O-O! (Picture me cupping my hands and giving a big ol’ too long of a boo..) Hawaii…it’s just how it is. I know life could be much worse than having to wear this stupid boot. I have permission to not wear it at the pool or beach and I can hobble around the hotel room. On the positive side I can wear one cute flipflop! I’ve been stuck in tennis shoes since May!

How did I get this stress fracture? Training for a Marathon? That’s what the¬†pediatrist asked..I guess this type of injury is seen with intense workouts. This is not my case. Did it start when I was the dancing fool at our friends wedding in May, the same wedding where I sprained my ankle? Maybe… This is what I do know. Once my ankle started to feel better I wanted to begin a light exercise routine to get beach ready for Hawaii…work on shedding the nearly 15 lbs I’ve gained. After scrolling through the exercise options on Comcast ONDemand, I chose a walk a mile in 15 minutes. Basically marching in my living room. I think it was geared towards the¬†elderly…and the next day my foot hurt. How pathetic is that?!¬†So I got over the goal of losing weight. I just wanted to be able to take a normal stride on the beach. Neither goals were met! *Sigh*

Awesome News! Today I received a call from Dr. Giselle Sholler from the Van Andel Research Institute in Grand Rapids, MI. She had received all necessary information about John’s treatment just today from Children’s (Huge shout-out to Cindy! Thanks!), reviewed it, determined that he is eligible for the DFMO clinical trial, and is ready to get the ball rolling! Dr. Sholler mentioned that Children’s Minneapolis will be a DFMO site, but it may take a few months to get final approval so we will start in Michigan an then YES, we will transfer John’s DFMO treatment to Children’s Minneapolis. Based on the end of John’s treatment she would like to begin within a month and is looking at the weeks of either August 12th or 19th. The first visit will be three days long with bone marrow biopsies and scans. This has to be done at the start to make sure John is NED as you need to be NED to be on this trial. At that time we will be given a supply of DFMO, sent home and hopefully back at Children’s for care. I was a jumble of emotions when I got off the home. I was excited, relieved, and even a little¬†teary-eyed.

When Jon and I talked about this turn of events this afternoon I learned he felt the same way. It is a huge relief to know that this is actually going to happen in the time it needs to happen. If we didn’t attempt to enroll John in the study or missed “the window of opportunity” and his nueroblastoma came back…how would we live with ourselves as parents? I need to know,not only know..but do, ¬†everything possible to improve John’s chances of not relapsing. There are no¬†guarantees, but we have hope.

I saw a quote that another mother wrote about Dr. Sholler. This nueroblatoma mom said “Dr. Sholler is a badass pioneer who will change the face of this disgusting disease.” She sounds like the perfect person to be on our team!

Wow! This has turned into a super lengthy post! Tomorrow we learn about John’s Make A Wish trip. We are all so excited!

Love, Hope & Blessings,


Thank you for the donations to our CureSearch Walk page!!

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