7/8/2021 6 Comments
Hello all! We hope everyone is having a wonderful summer so far!
Thank you all for your continued support! We wanted to update all of you with the status of Sawyer's treatment. Thank you as always for reading!
Sawyer completed his second cycle of combination therapy at the beginning of April and had updated imaging done at the end of April. The new imaging showed that his Neuroblastoma disease had not progressed any further but it had not improved. His Curie score remained a 4. After consulting with his team at Comer, we were told that a spot had opened up for Sawyer on NANT clinical trial 2015-02 in Experimental: Cohort B2. We felt that this would be the best course of treatment and decided to proceed with the trial. One of the reasons we transitioned to Comer Children’s Hospital was so Sawyer could have access to more treatments and participation in this trial was not available at Lurie’s. NANT (New Approaches to Neuroblastoma Therapy Consortium) trial 2015-02 consists of taking orally, Lorlatnib, a third generation ALK inhibitor in combination with 2 chemotherapies: Cyclophosphamide and Topotecan. The trial is in 28-day cycles, Sawyer takes the oral medication everyday and on days 1-5 he goes to the clinic to receive both chemotherapies, he is not required to be inpatient for these cycles.
He has had these chemotherapies before when he was first diagnosed but even though the dosage is smaller for this trial than those he received during his initial frontline treatment, they really bottom out his counts and he has had to have some unscheduled hospital stays. During the first cycle he was in the hospital for a week and a half after he and Calvin both contracted a case Parainfluenza, a common respiratory illness that primarily occurs in infants and children. Calvin recovered fairly quickly but because Sawyer was neutropenic (low counts), he had nothing to fight the virus and ended up having very high fevers that were hard to get under control. Once his counts were able to recover, he started feeling much better. He has also had to have frequent blood and platelet transfusions because of low counts.
However, we are hopeful that he will have good results with this treatment. We have heard from other Neuroblastoma families about the effectiveness of the Lorlatnib medication and the results it can yield. You may remember that Sawyer had previously been on a second generation ALK inhibitor, Ensartnib, and had good results.
Sawyer will be transition from his PICC line to a Port on the 12th. He is very excited about the freedom this will give him. His next set of imaging will be completed this week.
Please continue to keep him and our family in your prayers and intentions. It means so much to us!
Again thank you as always for reading.
Until Next Time!
Jen, Jeremy, Sawyer & Calvin
7/9/2021 04:32:05 pm
So happy for the port, and that you are getting to be in the trial for the drug. I pray you have only awesome results! Much love to all of you. Theresa
7/11/2021 09:21:19 am
Thank you for sharing this update. It makes my heart so happy to see his smiling face, he is looking so grown up here. Sending you all so much love 💕
7/11/2021 04:58:55 pm
I’m so grateful for the update Jen. You all are never far from our thoughts and always in our prayers!
7/15/2021 10:14:50 am
My thoughts are with you all as you battle this dreadful disease. Sawyer is lucky to have such parents. Really. I love you guys. Would love to see you. Take care of that boy. And yourselves.
8/13/2021 09:50:36 am
We love you Sawyer! Stay strong, we are thinking of you every day!
9/27/2021 06:06:55 am
I’m so sad to read this post. I’ll be thinking of you guys as you are over at Comer. Happy to still see that cute smile of his and how big he’s gotten, stay strong Sawyer ❤️
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We are Jeremy and Jennifer Hunter, the loving parents of Sawyer and Calvin(Sawyer's little brother). We firmly believe that it family always comes first and would like to keep everyone updated through this site and this blog on the treatment and care of Sawyer during his fight against Neuroblastoma.