Yes, I am still here!!!!!

OK, so first of all I am still here. I was doing some reading about having a blog and one of the first things mentioned was that the writer needs to be consistent in putting up new posts. Obviously, I have violated that rule! I WILL UPDATE THIS AT LEAST ONCE A WEEK FROM NOW ON.

Here is a quick recap of what has happened in the last year. For most of 2014 I had multiple different types of chemotherapy that had initial success in treating my tumors. As soon as the chemo would stop the tumors would begin to grow larger.

In a search of other treatment options we decided to have another biopsy done in September. The biopsy results showed that my cancer had been misdiagnosed. As a child I had a pediatric cancer called Wilms’ Tumor. The treatment at the time was removal of a kidney and chemotherapy. The new biopsy confirmed that this cancer had recurred 32 years later. I must also say that they still would not have diagnosed it correctly if Sandi had not insisted to my surgeon that the pathologist check for certain tumor markers that are present in Wilms’ Tumor. These markers had not been checked in the previous biopsy and would not have been checked in this one had Sandi not insisted.

There are a couple of important lessons to be learned from this experience. Cancer treatment is totally based on what a pathologist diagnoses. If they make a mistake the treatment received will not be correct. Everyone else involved in the treatment is assuming the diagnosis is correct.

The second lesson is that it is very important to have someone fighting for/with you. If Sandi had not insisted to my surgeon that he have certain markers checked by the pathologist they still would have made the same mistakes.

From everything we can find this diagnosis seems to be very uncommon (although there are many Wilms’ Tumor survivors out there that are starting to age into adulthood, so this could change). Wilms’ Tumor has not been known to come back this long after the initial outbreak. This made treatment options hard to find. I had a new chemotherapy starting in October that seemed to initially help reduce the size of the tumors but eventually they began to grow.

Ultimately we made the decision to travel to MD Anderson Cancer Center in Houston. It is regarded as one of the best Cancer treatment hospitals in the United States. Sandi and I made the trip about four weeks ago in the beginning of March. We have been very happy with the results so far. I met with multiple doctors including a Pediatric Oncologist. It had been impossible for me to get an appointment with a Pediatric Oncologist previously because all of them questioned the diagnosis. They did not believe that a 37 year old could possibly have this pediatric cancer after 32 years cancer free.

She laid out a plan for Chemotherapy, for my Oncologist in Indiana, that has been successful with other patients. I started the new therapy two weeks ago. It calls for treatment with two drugs for five days straight, then two weeks off. I will have one more round next week then I will get a scan. Next, two more rounds of the chemo and another scan. After that scan we will be going back to MD Anderson to determine the next step. Fortunately the chemo can be done in Indiana.

The ultimate goal is to reduce the size of the tumors to a point where they can be surgically removed. We are still unsure what exactly the treatment will be after the four rounds of chemotherapy.

I would like to thank all of our friends and family for being so generous with their assistance. You have been more generous then we could have ever asked you to be. Sandi and I can not express how thankful we are.

The biggest thanks I have is for Sandi. She has always been next to me (even when I told her she didn’t need to be) and always keeps fighting! Without her I am not sure where I would be today. Thanks and I love you.

If you would like to contact me please send an e-mail to jdmorse78@gmail.com .