Sawyer Update: A False Sense of Normalcy

We were recently looking at Sawyer’s page and we were so surprised that we had not updated it in over a year!  So, we thought we would fill everyone in on where we are with Sawyer’s treatment. 

In our last post we informed everyone that Sawyer would be starting the Ensartnib clinical trial.  The trial consisted of Sawyer taking one capsule of the Ensartnib daily.  For the first 6 months he had weekly labs and once a month he would go to clinic for an in-person examination so he could receive his medication for the month.  He was able to get his labs at a facility near us, which meant that he only had to go to the main hospital downtown once a month.  After 6 months he no longer required weekly labs just monthly ones with his clinic visit.  But the best part was we were getting results.

After two months of being on the Ensartnib exclusively Sawyer had his first set of images and for the first time since before he started his Stem Cell transplants, we saw a reduction in disease.  His Curie score moved from 3 to a 2 and we saw lightening of active areas in his MIBG imaging.  This is pretty much the way things stayed for 2020.  He never had to be inpatient, his CT was always read as stable and a MIBG Curie score of 2. 

We settled into a routine of normalcy, as much as we could in 2020.  Sawyer was participating in remote learning and doing very well.  He has been receiving high marks in his classes.  He put on weight, was eating well and was just being a kid.  He was going to clinic every month for his medication, his labs were completely normal and every three months he would go in for imaging.

At the end of January, Sawyer was approaching the 1-year mark of being on the Ensartnib trial and he was due for regular imaging.  We had no reason to suspect that his labs and imaging would not appear like they had previously, he was energetic and healthy.  But when we took him for his clinic appointment to receive his monthly medication Sawyer’s doctor informed us that his recent MIBG showed a reoccurrence of disease behind his right lung.  Because Sawyer was participating in a clinical trial, the trial dictated that when any new disease is observed participation in this specific trial must end.  The end of the trial meant an end to the sense of normalcy, we had become so accustomed to.  This also meant that Sawyer must undergo a new form of treatment. 

Now treatment gets even more complicated.  At this point there is no roadmap, no plan, we must determine Sawyer’s next course of treatment based on the options available, the amount disease, and the advice given.  After speaking with our team at Lurie’s, we have decided to move him to Comer Children’s Hospital which is associate with the University of Chicago because of the treatment’s he may potentially require.  The Neuroblastoma program at Comer’s is headed by Dr. Susan Cohn who has been studying this disease for more than 35 years.  She was previously at CHOP (Children’s Hospital of Philadelphia) and at COG (Children’s Oncology Group) where she helped develop the current roadmap used in frontline Neuroblastoma treatment.

After meeting with Dr. Ami Desai, a member of Dr. Cohn’s team, we decided to start with new imaging and a bone marrow (3/10) to determine Sawyers baseline at Comer.  The new imaging, which is a combination of the CT overlaid with the MIBG, showed progression in the 7 weeks since his last imaging at Lurie’s on 1/22.  This confirms that Sawyer has officially relapsed.  He has new soft tissue disease in his chest and abdomen and his Curie score has risen from a 2 to a 4.  However, his bone marrow is negative this combined with imaging leads the doctors to believe that the progression is just in the soft tissue and not his bones. 

Given all this new imaging we made the decision to proceed immediately with treatment.  On Friday afternoon (3/12), a PICC line was placed in his left arm and he started combination therapy.  This treatment combines chemotherapy and antibody treatment.  It is commonly administered as the first step in cases of relapse.  It is a form of treatment he has seen previously and responded well, we are hoping Sawyer will have another good response.  He will have 2 cycles of this therapy and then a new set of imaging.

Given everything he has been through Sawyer is doing amazingly well.  After being without inpatient stays for a year and a half he is still getting used to it again.  He has asked lots of questions and we are happy to answer.  Since he is still remote learning, he is able to join his Zoom meeting and complete most of his work with the rest of the class.  Between Zoom, Nintendo, Legos, Spongebob, and the Chicago Bulls, he has been able to occupy his time.  He really gets a kick out of beating Jeremy at Super Smash Bros.

Thank you to all of you who have reached out with messages of love and support.  They mean so much to us.
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Please continue to keep Sawyer and our family in your prayers.