Sequencing Results...Update

Hello Everyone!  We hope all of you had a wonderful holiday season!! We were so happy that this year Sawyer has been feeling well and was able to be home and celebrate Christmas and New Years with friends and family unlike last year.  Both boys had a wonderful holiday and received everything they wanted for Christmas.

With the new year we have had a new change in our family.  As many of you know last year before Christmas and before Sawyer started his first Stem Cell transplant, we had to say goodbye to our beloved dog Jack.  He had been a member of our family for over 12 years and as you can imagine it was very difficult for all of us.  But we are happy to report that with the new year comes a new addition, we have adopted and 8 month old lab/hound mix named Zane.  He has a lot of energy but is very loving and playful.  All of us are very excited!!

I did want to update everyone about where we are with Sawyer’s treatment.  Sawyer received an early Christmas present from his Drs.  On December 11, 2019 after 1 year 9 months and 15 days he was able to have his central line officially removed.  He was very excited and is all about taking showers now and playing in the water this summer. 
 
As you may recall from our last post, we found out that the nodules in his lungs are in fact Neuroblastoma growth.  Sawyer’s team sent samples of the nodules to the Children’s Oncology Group (COG) for 1) sequencing to determine whether this is a known Neuroblastoma mutation and 2) is there a medication either part of a trial or on the market that can treat this mutation.  We have finally received information about both.

The mutation that Sawyer has is called ALK R 1275.  So, what is ALK? It stands for anaplastic lymphoma kinase.  This is a gene that tells your body how to make proteins that help cells talk to one another.  This gene exists on the exterior of cells.  Quick little cancer biology lesson.  One of the reasons that cancer is so hard to kill is because the mutations usually exist within the cell itself.  Therefore, medications must penetrate the cell to kill the cancer and really the only way to do that is to give medications or treatments that kill the entire cell.  It is really difficult to just kill one type of cell that’s why medications that kill cancer cells also kill good cells too.  Which is why you have side effects like hair loss, development of mouth sores, GI issues, etc.  

Because this ALK mutation exists on the exterior of cells medications are more targeted and will not necessarily have the same side effects as chemotherapy medications.  We have recently heard from COG that the medication they are recommending for Sawyer is an ALK inhibitor called Ensartinib.  Variations of adult cancers such as lung and lymphoma have ALK mutations as well so ALK inhibitor medications have been in trials for a while.  This medication is currently part of a phase 2 clinical trial testing the medication on pediatric cancers such as Neuroblastoma.  It is an oral medication that Sawyer can take at home and we will be able to receive it from our home hospital meaning that travel should not be required.  

I have posted a link to the Clinical Trial here. 

Sawyer will hopefully begin taking the medication soon.  There are some logistical issues that need to be worked out before he can start. But we will keep everyone posted.  He is scheduled to have an updated CT the end of January.

Thank you again as always for reading.  Please continue to keep Sawyer and our family in your prayers and intentions.

Until Next Time,
Jen, Jeremy, Sawyer, & Calvin