Brady at PT

After an hour and 10 minute commute to Rochester this morning, our little hero was in quite the somber mood for PT. The rain and the construction caused our ride to be much longer than usual. Despite his not-so-spunky demeanor, I got some great pictures of Brady and Linda working hard!

Brady sitting and watching Linda demonstrate what he will do!


Up and ready to go!


Brady had to "pick apples" by reaching up high on his tippy toes. Then he put the apple in his pocket.


Next he got to jump on the trampoline! Look at how high he was:)


Finally, Brady had to walk across the balance beam and put his apple in the bucket. Go Brady!


I wanted to share a beautiful article that was written by our friends Mark and Laurie Napoleone and published in the Batavia Daily News. Please click here to read how we can all Lend a Hand for Hope against childhood cancer. Thank you Mark and Laurie for your hard work, dedication, and passion towrads helping families affected by cancer invovling one of their children. THIS family knows how much your generosity can make a difference, and THIS family is proud to join you in the fight!

Michael's Rainbow

Tonight we went to the awareness ceremony during the Michael Napoleone Memorial Foundation youth baseball tournament. I was asked to share a little bit about Brady's story and how this wonderful foundation helped our family. I'm so honored to speak on behalf of all families dealing with cancer.

The weather this afternoon and evening was SO wild here! As we loaded the family in the van, the thunder and lighting started. Then as we drove to the event, the pouring rain started with a strange wind. Come to find out a tornado touched down in our county (very usual for our area). When we got to the stadium, the rain had stopped. About 30 minutes later, the skies opened up again and it poured. The ceremony started, the rain held off. As the ceremony ended, the thunder started again, and it rained, AGAIN!

As we were driving home, the most beautiful rainbow was in the sky. At one point we could see it stretching all the way across the stormy sky!!! I like to think it was Michael's rainbow...

Moving On...

I got a lot of answers today as to why things haven't been moving along with Brady's scans...
The answer???

My doctor never ordered them! I struggle with whether or not I should put some things on the blog related to our dissatisfaction with our experiences, but I think if I am always honest, then perhaps our story will help someone else. I found all of this out by calling the MRI department for the 3rd day in a row. My wonderful nurse friend there and I have been playing phone tag. She finally got a hold of me and told me that they haven't been able to schedule Brady because they haven't received an order from the doctor. I emailed the doctor on July 16th, and she replied that she was putting in the order the next day. Thank goodness I saved all of the emails...

I was SO outraged by this, and so many other times that we have seemingly been forgotten, that I composed myself and called the oncology department. I told them what had happened, that I had emails documenting everything, and that this is not the first time our doctor has failed to communicate with us. I explained that I could no longer trust our doctor to do what she says she will, and that I am completely uncomfortable putting Brady's care in her hands. I then asked for a different doctor. I felt a little uneasy since I hadn't spoken to Matt about any of this, but I knew he would agree 100% (and they should be glad it wasn't him calling!!) A got a call back from a NP about 30 minutes later who wanted to know the whole story. I told her about this incident, about our doctor not remembering that she had met with us regarding Brady's post-op scans, and how no one called me back 3 weeks ago when I was concerned about his belly. She asked me to forward her the emails that I had, so I did.

An hour or so later, the secretary called me with a date of July 30th for scans, and an appointment August 5th with a new doctor. I'm sad that we are starting over with a new doctor (seems to be a trend in our lives lately). However, I will never, ever apologize for expecting Brady's doctor to communicate with us and treat him as though he matters. So, one week from today we go to Strong for MRIs of Brady spine and abdomen, as well as blood/urine tests. Then we have to wait until the next week to meet with the new doctor (who by the way we liked very much when we met him right after Brady's diagnosis). I also reiterated to the NP our requests regarding anesthesia. I'm not sure what will happen on that, I have a feeling we will be hashing it out with the anesthesiologists that day.

In other "Brady News": Brady had a GREAT day at PT today. He was a willing and energetic participant in all activities! I was very proud of him!

This Saturday at Dwyer Stadium (where the Muckdogs play) the Michael Napoleone Memorial Foundation will be holding a Youth Baseball Tournament. It actually runs from Friday-Sunday. On Saturday you can come to the stadium throughout the day and enjoy free baseball, raffles, food, and free crafts for kids! There is an awareness ceremony at 6pm on the field. I will be speaking and singing (please be praying for me!). Come out and support a great cause!!!