August 20, 2017

Tonight we returned home from Houston, one of many trips this summer. Today Mason's checkup was what we expected, but still not easy to digest. Much the same way you feel in the path of a hurricane coming. You prepare but never are prepared. Masons brain tumor, (the one in his front right ventricle) is growing. It is about 2.3 centimeters. It is growing but not as fast as it would were he not using his current investigational medication. He will continue on it but only as we make preparations for his next treatment ahead. Through good fortune and a huge effort, Mason's case will be reviewed at City of Hope. Mason will absolutely be getting surgery in order to debulk the tumor. When and where that will happen is going to be determined in large part when we meet at City of Hope next week in Duarte, California. There, we will see if he is a candidate for a new Tcell trial that we have been waiting for 7 months. Trying to prepare financially for this next endeavor we will be having a fundraiser this Sat at our house. Next week we will find out exactly how much City of Hope is going to cost us, we have been denied coverage from our insurance many times, we pray this is approved.

As always I'm humbled both by Mason's (and Nikki's) will to live. Happily. On the other side the support from family, friends, charities, and our doctors. All of whom have made it clear that a cure and our comfort is a top priority.

On a personal note; All of this overwhelms me. I have a young wife and son with cancer. I have dropped all of my own pursuits. The concept of self isn't even a current consideration. Nor do we have any semblance of a long-term outlook, we live week to week. Nikki and Mason have had a true heroes attitude toward their battles, scared and exhausted but staying on course. I keep their freedom of choice my top priority. Mason hopes others will benefit from the vast amounts of research gained from each time he engages in a new study. Nikki is equally heroic. She gives of herself withholding very little. Even sickly, at times, she never disengages. I can never accomplish the level of care for the children that she can. My motivation is far more selfish. All I want is to have my whole family healthy. Including our rock, Madisen. Her role in our family is huge, she has taken on so much for a young girl her age and I can't imagine how all of this effects a young girls psyche.

We are almost ready to submit to the unfortunate pressure of feeling hopeless at times. But Providence keeps a light shining on our course to follow. And loving people help make it easier with their selfless support. Thank you all as always, Jesse

February 26, 2016

Update from mom:

As parents, we are carefully guarded with our excitement over the news. The results from Mason's MRI today show that the disease is stable, no shrinkage but no new growth. This is good news for such an aggressive type of cancer. Mason's doctor is ecstatic over this kind of news. Essentially in his words.... you have to stop the river before you can change its course. So his treatment is effective! Dr. Zaky gives us HOPE after being told by doctors in Arizona there was nothing they could do. I'm grateful for his dedication and time he puts into Mason individually and in the fight to find a cure!