My daughter Morgan had been sick off and on for about a year. She started with a string of ear infections and illnesses to include being diagnosed with viral gastroenteritis for 3 consecutive months. She would be ill, and then she would be okay for a while.

In August of 2012 she was having belly pain off and on AGAIN. One evening it was bad enough to go to the ER. When they looked at her x-rays they felt that she had constipation despite the fact that she had been having what seemed to be regular bowel movements.

Things took a turn for the worse and as a parent I began to demand for a better answer. I just knew something was not right. On the evening of Sept. 4th, during a CT, a mass was discovered in Morgan's abdomen. As a former CT tech, I watched in absolute horror as the images popped up on the screen. Nobody needed to tell me. I had to collect myself and walk back into that room and act like everything was okay while fear felt as though it was squeezing my heart into my throat.
I decided we would buck the "wait until we call you tomorrow" system by the referred surgeon that evening- we went to Akron Children's right away and she was admitted to the oncology unit from the ER at somewhere between 3 and 4 AM. By that same afternoon at 4PM she was in surgery for an endoscopic (just little holes) biopsy of the mass, a bone marrow biopsy and a port placement. It was obvious the mass was cancer, but we needed to find out what kind. She was very sick, endured some surgical complications and we were very scared. No words can describe that week and the weeks to follow.

They had some ideas of what they thought it might be. However it seems that when rare little girls get cancer it can be rare too. Little by little they ruled out each one on the list. Samples had to be sent out to another facility for a little help with the determination.

During the week and half that we had to wait for the answers that they were able to give us there was a lot going on. There would be many answers we would have to come up with on our own. During the CTs, MRIs. EKGs, blood work, blood transfusions and overwhelming concern from family, friends and the community we had to figure out how to tell her and come to grips with what we were about to endure. When the answer came, we decided that we would not ask for a prognosis after they told us just how rare the cancer was. We needed to stay positive and focused and not daunted by statistics that weren't necessarily significant and DID NOT INCLUDE OUR DAUGHTER. Besides, would the decisions be any different knowing that information? No.

Morgan is still in treatment, but has completed 6 rounds of chemo, surgery to remove the mass that responded EXCEPTIONALLY well to the chemo treatments and 28 radiation treatments. At this point her scans are "clear" and we are thankful for all of it.

So, why would I join this crusade if MY daughter is doing so well?

You see, our battle does not end when treatment ends. Don't get me wrong- we WILL celebrate BIG when Morgan completes treatment. It will be the end of a major part of the battle and we will be grateful, thankful, joyous, ecstatic.... well you get the idea. But it isn't JUST about research for treatment and to find a cure.

This is going to sound really strange, and it is NOT supposed to be insensitive although it could seem that way to those who have lost loved ones to cancer. Childhood cancer usually has better "odds" for survival, but it is still the NUMBER ONE disease killer of kids. In addition, while survival rates have increased over the years, so have the number of diagnosed cases.

Sadly, part of the problem is that these kids often suffer from things secondary to treatment. And, unlike adults- even after 5 years out- while "cured" of the original cancer they have to be followed for life because they have an extremely higher risk for secondary cancers DUE TO the treatment for the first. That risk peeks in the 20s and 30s. Kids have a long row to hoe after this. That is part of the research needed. Do you know that in recent history only ONE new chemo drug has been approved for kids versus TEN for adults?! So guess what- kids are experiments because of lack of research. They use some of those adult drugs anyway (they got nothing else) and deal with the consequences later. Only 4% of National Cancer Institute funding goes to ALL pediatric cancers. The rest goes to adult cancers. That is why St. Balderick's and Children's Oncology Group is so important. The lack of research for treatment AND secondary issues is VERY poor.

Somehow, all the families that we have met and become close with were not the "lucky ones" to get to deal with the secondary effects. That is why I feel sooooo sooo strongly that we need to turn this around and be advocates. I guess "survivors guilt" can be turned into something productive.

This is my long way of saying THANK YOU for making our battle yours. It is also my way of asking that this support that you have so generously shown this year doesn't end when our battle is perceived as ended with treatment. Not just for Morgan either, but for all families that have and will have to experience this.

With Gratitude,
Morgan's Mom