Tuesday, October 1, 2013

Our time in Houston in August was good, despite the eye surgery being canceled. The worst part of that experience was not finding out the surgery was canceled until we got to the hospital. I figure if the doctor was sick enough to cancel, he knew it Sunday night, and I actually would have preferred a phone call in the middle of the night telling me the surgery was canceled. That way I wouldn't have had to put Collin through the motions of getting up before dawn, not being able to eat, etc. I quickly made peace with the whole thing though, and once we were back in PA, I made an appointment with the eye surgeon who had sewn Collin's right eye partially (and temporarily) closed to allow it to heal when he had a corneal abrasion in the fall of 2010. After a consult with him, we scheduled the surgery to place the weight in Collin's eyelid for October 22.

Since returning home from Houston in August, Neya started fourth grade, and now has dance class twice a week. She also decided she wants to play the flute, and had her first lesson last week. Collin has resumed all three of his therapies at Hershey, and will soon be receiving additional therapies through the county Intermediate Unit. He is currently in the middle of his tenth cycle of maintenance chemo. He has finally grown enough that I had to buy him some bigger clothes for the first time in about 2 years.

Last week, we had the amazing opportunity to participate in a press conference at the Pennsylvania State Capitol Building, where State Representative Kerry Benninghoff discussed House Resolution 389 designating the month of September as “Childhood Cancer Awareness Month” in Pennsylvania. During the half hour press conference, Representative Benninghoff, doctors (including Collin's oncologist), and parents (including myself), spoke about the importance of childhood cancer awareness. It was an honor to participate, and we had some fun after the press conference, when Representative Benninghoff gave the group of us a tour of the capitol building.

Childhood Cancer Awareness Press Conference, PA State Capitol Building, 9/25/13

Rep. Benninghoff, and some very special doctors and parents who also spoke that morning.

Collin's beloved oncologist, Dr. Comito.

Neya and Collin being supportive during my speech.

Rep. Benninghoff teaching us some interesting facts about the capitol building and how things work.

Trying out the desks in the PA House.

Last Friday after Collin's OT appointment, we went to the building at Hershey Medical Center where the medical records office is. I needed to request a copy of some records to take to our first IEP meeting this coming Friday. I filled out the release form, and completely expected to return a few days later to pick up the records, because that's how it has always worked in the past. Well, this time it was different. As soon as I filled out the release form, we were taken back to an office where a medical records staff person pulled up the records I needed and printed them right away for us. After about ten minutes, Collin and I left with the records we needed. Then something kind of incredible happened.

As we were getting off the elevator on our way back to our car, a doctor who was going to get on the elevator leaned down to look at Collin. It happened very quickly, and I'm not even sure what drew her attention to his face, but she stopped me and asked about his facial paralysis and his right eye not closing. Most people probably don't notice the asymmetry in his face in quick passing. I explained that it's due to nerve damage following his brain surgery in 2010. She then said, "I can help him, I want to help him." She asked if we could wait for her to run up to her office for some information, and I agreed to wait. Sure enough, just minutes later, she returned with a copy of a newspaper article. The article describes how she used accupuncture to help a woman who had nerve damage to her face following surgery to remove a rare tumor from her neck. This woman had experienced terrible pain for years, and was unable to open one of her eyes due to the nerve damage. After just a few sessions of accupuncture with this doctor, her pain was significantly reduced, and she was able to open her eye again! I told the doctor that we have surgery scheduled for the weight to be put in Collin's eyelid, and she said, "Don't do surgery, I can help him." I figured we have nothing to lose by trying, and if it prevents us from having to do another invasive procedure, it will be worth it, so I agreed to call and set up an appointment.

I can't describe the feeling I had as we walked to our car. I was shaking, and I had tears in my eyes. I have always said that all along this journey over the last three years, the right people have been put in our path at the right time. I thought about the things that had to fall into place that morning to allow that encounter to take place: the amount of time I spent looking something up on my phone before leaving the therapy parking lot (which I rarely do), the 10-15 minutes it took to wait for the medical records I hadn't expected to leave witsh the same day, down to us getting out of the same elevator (out of three) that the doctor was getting into. And of course the eye surgery not taking place in Houston in August. I had a profound feeling in my soul that this whole encounter was more than just coincidence, and I had to sit in my car for a few minutes to collect myself before driving home. I am very eager for Collin to see this doctor Friday and I'm hoping and praying she can make a difference!

This past weekend was the first of three canning weekends during which Penn State Students collect donations in their big blue and white cans.  They will be out again in October and November, so if you see them, please consider making a donation. Even if it's just some spare change you have laying around-no amount is too small! Every penny raised by THON goes to the Four Diamonds Fund, which benefits children like Collin treated for cancer at Penn State Hershey Children's Hospital in so many ways! We were very excited to see some canners Sunday morning!

Also, this coming Sunday, October 6, we will be participating in the Four Diamonds 5K Run & Fun Walk for the second time. It's just one small way we can try to give back to the Four Diamonds Fund for everything they have done, and continue to do, for Collin and so many other amazing kids! If you'd like to make a donation to our team, you can go to the 2013 Four Diamonds 5K Run & Fun Walk page, click the button that says "Donate To This Event" and type in Team Kratzer. Again, no amount is too small, every penny helps!