Saturday, September 2, 2017

9.2.2017 : Relapse

It has been a very overwhelming 24 hours digesting the devastating news of Sammy's relapse. We just were not expecting this news so soon. While we knew this was a very definite possibility, we just thought we would have more time before having to fight again.
The truth is about 3 months ago, I found Sammy's pathology report when looking for documents in his medical records online. This pathology report confirmed his medulloblastoma diagnosis, but it also sub-typed his tumor. Medulloblastoma has 4 sub-types. WNT, SHH, Group 3 & Group 4. Group 3 and Group 4 would be the least desirable sub-types, as have basically a 1 in 2 chance of 5 year survival, or just about that prognosis. Sammy's tumor was sub-typed as Group 3 with 70% confidence, with a few markers for Group 4. So for the last few months we have been processing and really coming to terms of what that means for Sammy. Not putting much weight into statistics. But knowing that the chances of him fighting again were almost certain. Especially since we chose a chemotherapy only treatment plan. Which we still feel was the absolute right decision for his treatment, despite the outcome. It gave us time.

Sammy's cancer has returned and with vengeance. It has spread to the lining of his brain, his spine and a spot near his pituitary gland. I do not know how much is there, only where. From our understanding it is not a solid mass (like when he was first diagnosed), but a diffused spread. This will lead to a very difficult fight. We do not know our options yet. We will be seeking what is possibly available, most likely looking at Phase 1 and Phase 2 protocols. We are meeting with Radiology from Mayo Clinic tomorrow (Sunday) to discussion the possibility of Radiation. We would only choose this route if the quality of life is worth the risk. Radiation comes with a lot of sacrifice to quality of life. But it is an option we have to explore, as radiation is the most effective treatment for medulloblastoma. Our hospital has tumor board on Wednesdays, so they will be discussing Sammy's case in depth at that time to come up with our options. We will be meeting with his team on Thursday to discuss these options and come up with a plan.

In truth, any treatment we do will be a dart in the dark. No guarantees on anything we choose. Not that there are any guarantees when cancer is involved, especially childhood cancer. Sammy is entering a fight for his life. And we need all the support and prayers for our family, as we make some of the toughest decision any parent will ever have to make. We will be taking time as we move forward to cherish the time we have ahead with Sammy. Making the best of the time he is feeling his best.

As of right now, Sammy is being discharged tomorrow (Sunday). There is no reason for us to stay inpatient, as he is feeling okay and we do not have a current plan. We all agree that going home and back to normal life is best for him. We as a family are quickly planning a trip to Disney for a week from now to spend time making some memories. To give Sammy some time to be a kid. Several members of our immediate families will be joining us, so that we can celebrate life together with Sammy. Our families will be traveling across the country to join us, as none are local to us. We would be beyond blessed to receive any assistance in helping towards the cost of our Disney adventure. Our chance to have a magical time with Sammy while he is feeling his best.
Please surround our family in prayer. We have a very hard road ahead. We have faith knowing that God can do miracles, and we very much are hoping for a miracle. But we also know God already wrote Sammy's story, he already knows the final period. His will just may not be the desires of our hearts. And that is very hard to understand. But we are trusting that God will carry us from one minute onto the next for where ever the journey ahead takes us. God has a plan. I know that Sammy's life has a purpose and we have already seen the impact of this short life on those around us. These things are easy to say, but are going to feel impossible to live. Our lives are filled with a pain and heartbreak that only God can heal. Sammy is special and his fight is not over. Cover us in prayer. Share our journey.
Picture is from this evening. Our friend brought Logan, and her oldest son (who is Sammy's best friend) to come spend some time with Sammy tonight. It was absolutely wonderful to see and hear.