April 10, 2014
Good Evening,
Thank you for all of your thoughts and prayers over the past several weeks. Today was Nathan's 6 week follow up scan. Nathan's symptoms have declined over the past 6 weeks which did not give us a great deal of hope that we would see positive results today. He has had difficulty drinking, swallowing, managing excess saliva and congestion. In addition, he has been functioning on an increased lack of sleep as he is regularly up 4-6 times a night with insomnia and an inability to stay asleep for long stretches. Nathan has his good days and bad days, but works extremely hard to accomplish the tasks of the day that we so often take for granted like eating, drinking, and sleeping.
Our oncologist always wants to hear what we have to say first before giving us the results of the scan because Nathan is so good about protecting himself when he knows something just isn't right. We were thankful that our oncologist, although on medical leave, was involved in guiding his care today. Please continue to keep Dr. Jakacki in your prayers - she has dedicated her life to treating her patients like a Mother cares for her child.
Today was no exception. The results of the scan match what we are seeing clinically. The overall tumor is basically the same as it was 6 weeks ago, but there is an area deep within the medulla where they see questionable activity. The radiologist believes this activity is likely the vaccine working and treating the tumor. Unfortunately, there is no way to tell what is what based on the pictures taken today. At this point, we will hold the treatment for another five weeks and give the brain time to rest and settle. We will scan again in five weeks in hopes that his clinical symptoms improve and we can visually see shrinkage on the scan.
As the doctor stated today, this is "uncharted territory" because there is not enough data to prove anything. This vaccine study has enormous potential and we are very close to seeing positive effects, but it does not come without significant risk. Unfortunately, the questionable activity they saw on the scan today is in a critical part of the brain. It is deep within the medulla where breathing and swallowing are controlled. There is no room for growth or error.
So once again, we wait and pray that the next five weeks allow Nathan to recover from the treatments and we begin to see improvements in his symptoms. He has been on the study for seven months and we have yet to hear "it's working." That is the hardest part as a parent. Although we believe we are helping him, we don't know how far to push without damaging healthy tissue or letting him decline. We have no control, we have to trust the experts who are caring for him, and trust that God will help his body accept the treatment. It has been a very difficult couple of weeks leading up to today's results, but we have great science in our back door that is giving us a reason to have hope.
Since our last update, so many of you have had great challenges of your own. We have become a team over the past two yeas who looks out for each other and stands by one another in prayer. There have been deaths of close family members, significant health issues, and yesterday the tragedy at Franklin Regional High School that personally effects so many of our dear teacher friends and superintendents who manage our wonderful schools. When you are the parent of a sick child, you are reminded every day how quickly life can change and it is our privilege to enjoy each healthy day that God gives us. We don't take anything for granted. Our deepest thoughts and prayers are with all of you who have had to endure great challenges and pain. We will continue to stand together and get through whatever life brings us.
You are our rocks who make each day a little easier. Thank you!
Love,
Mike, Beth, and Nathan
Nathan is ready for the hospital with his special suitcase on wheels full of toys from his cousins and his new leapfrog game!!
Stay out of my way! I have toys!
