Living the “stable” life
Stable is the new word around here. His MRI on August 22nd showed his tumor is still stable with no growth and some necrosis, which are essentially dead cells. His Dr at Phoenix Children’s Hospital was encouraged by the results and we are too! We are hoping his next MRI will show more dying cells but today we are thankful for stability! It’s hard to not get too excited about this because we know there is a ticking time bomb in his head that we have no control over called DIPG. Things can change in an instant so we thank God every day that Hollis is allowed to live the life of a normal 7 year old. The balancing act of tempering our excitement to reality while having arms raised in thankfulness to God is definitely difficult.
Many of our friends are now following the stories of other DIPG families on Facebook and know that we are living a blessed life. When you are given the diagnosis of DIPG, you are told that a standard 28-30 day treatment course of radiation with steroids will shrink the tumor enough to take away the debilitating symptoms for what they call a “honeymoon period” of a few months. Technically, we are in the honeymoon period with Hollis. However, last month an otherwise healthy 4 year old girl from Texas only survived 4 days after diagnosis. A quick onset of symptoms leads a family to the hospital where they are told they only have months left with their child but 4 days later she is gone. There isn’t even time to do radiation. There are also kids going through radiation and heavy steroids that aren’t seeing any benefits as their symptoms continue to exist or worsen. This is so upsetting, frustrating and confusing to us!
September is Childhood Cancer Awareness month so we have tried to do our part with that. This past weekend thousands of people from around the Country went to Washington DC for an event called CureFest. They wanted to let the Government know that the lack of funding for pediatric cancer is shocking. Research for DIPG is almost entirely funded by family foundations who have lost children to this horrible disease. We were not one of the families in Washington, but next year we hope to join them and believe that God will allow Hollis to be with us. Here locally Shane did interviews with FOX sports and the Arizona Diamondbacks to raise awareness and funds for Phoenix Children’s Hospital.
Hollis is doing quite well as many of you know. He goes to school every day, plays flag football and much to his disappointment still has to keep his room clean and do homework! I know the last part is shocking, but we still want to keep life as normal as possible for him. What’s not normal is that we are now making a monthly trip to Germany to get treatment that we pray will keep his tumor stable. He has taken it all in stride and adjusted well to the chronic jet lag of a global traveler. Please continue to keep our family lifted up in fervent prayer for safe travels, stability and most of all a miraculous healing that we will know came only from God our Heavenly Father.