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
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.
Please continue to keep Sawyer and our family in your prayers.
1/8/2020 1 Comment
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
11/7/2019 2 Comments
Hello all sorry for the delay. We wanted to wait until we had some more information to post an update. Here goes. Unfortunately, the new nodules are new Neuroblastoma growth. When they took a closer look at the cells they looked like they had been treated (differentiated). This means that they developed probably while he was getting immunotherapy or earlier.
So as of right now they are not recommending more treatment for Sawyer. He will have another CT scan in 1 months time and they will assess again. In the mean time they are sending the tissue samples off for genetic sequencing to determine if there are any differences in his baseline and if there are any drugs that are compatible in terms of possible treatment in the future should he need it. This should take a couple weeks. Please continue to keep Sawyer in your prayers. Thank you as always for reading.
Until Next Time,
Jen, Jeremy, Sawyer, and Calvin
10/27/2019 4 Comments
Coming to the end...Hopefully?
Hello Everyone! I want to thank all of you for following along with our journey through Sawyer’s treatment. It has not been easy to say the least but I realize I haven’t updated in a while so I wanted to fill in everyone.
Sawyer had his last inpatient stay the last week of August. He did very well. He received the dinutuximab antibody and had the typical side effects like fevers and pain. The staff was so sweet and gave him a wonderful send off. Sawyer is very excited to not have to spend more time in the hospital. He officially completed frontline treatment on October 13th taking his last dose of retinoic acid.
On October 16th and 17th Sawyer had updated CT, MIBG, MRI, Bone Marrow aspiration, Echocardiograph, and EKG. The results were mixed. Sawyer’s central mass along his spine and the masses along his lymph nodes are smaller his Curie score is still stable at a 3. But his CT showed that there were some nodules in his lungs. They cannot determine from the imaging whether the nodules are just an infection like pneumonia or new cancer. They are less than 5 mm each and did not show up on the MIBG but imaging said that at that size they wouldn’t show up on the MIBG even if it was new disease. Therefore, this Wednesday 10/30 Sawyer will have an appointment with IR (Interventional Radiology). They will use real time imaging to extract the necessary nodules and send them for biopsy. We are trying not to get to nervous until we know more but we could use some extra prayers this week.
Thank you all for your love and support! We will update when we know more about the results.
Until Next Time!
Jen, Jeremy, Sawyer, and Calvin
6/30/2019 6 Comments
Immunotherapy Cycle 2 & Starting 3
I apologize for not posting this sooner. Sawyer finished his second week of Cycle 2 the week of June 2nd -8th and unfortunately it was a lot harder than we thought it would be on him. In case you were unaware the lower organs (intestines, colon, etc.) are very sensitive to any kind of treatment. Sawyer especially so because of the shifting of the organs during surgery and the intense radiation that portion of his body received. After his second day of receiving the CH14.18 Antibody and IL-2 combination he developed some severe abdominal pains. The doctors put his treatment on hold, sent him for imaging (X-ray and ultrasound), and consulted with his surgeon. The imaging indicated that he had a significant blockage which his surgeon thought was at least partially due to some scar tissue build up from the surgery and radiation as well as the side effects from the IL-2 and the pain meds. His team determined that he would not need days three and four of the antibody, they stopped his treatment and shifted the focus on getting him to pass the blockage to prevent the need for surgery. It was hard on him; he was not allowed to eat or drink anything and had to have an NG tube inserted in his nose to suction the contents of his stomach and relieve the pressure in his abdomen. In addition to having the NG he also needed to walk the halls regularly, he was very uncomfortable and it was very difficult, as you can imagine, but he did everything the doctors and nurses asked of him and as a result he was able to pass everything on his own and only had to be inpatient an extra day.
Sawyer was much better when he came home. He started feeling better, eating better and has been putting on some weight. The week of June 17-21 he was able to attend a special camp here in Lombard called TLC Camp. It is designed for children in the area age 5-13 who are cancer patients, survivors, and their siblings. It was a fun week jammed packed with lots of activities and outings that culminated with a trip to Six Flags Great America. He really enjoyed it!
Last Monday (6/24) was very exciting Sawyer got to meet his favorite baseball player number 44 Anthony Rizzo!! Thanks to the Anthony Rizzo Family Foundation Sawyer and Jeremy were able to go out onto the field to meet Rizzo and Sawyer was even able to go into the dugout. We were also treated to dinner and games at Sluggers and tickets for the whole family to the baseball game that evening. Sawyer was very excited that the Cubs came away with a win that evening. It was a very fun night for all of us!
This week (7/1) Sawyer is back in the hospital to start his third cycle of immunotherapy. He will just be receiving the CH14.18 antibody and knowing how he reacted last time we should hopefully be able to anticipate his needs and adjust his medications accordingly. He is scheduled to receive the antibody for 4 days and discharged on Friday.
Thank you so much for your support! Please continue to keep Sawyer and our family in your thoughts and prayers! Thank you all for reading!! We will continue to update with Sawyer’s treatment.
Until Next Time!!
Jen, Jeremy, Sawyer, & Calvin
5/31/2019 2 Comments
Hello Everyone! I’m sorry for not updating sooner the last month has been pretty busy for us. Sawyer has started his immunotherapy treatments and is currently in the hospital starting his second cycle. The immunotherapy consists of 6 cycles cycles. 1, 3 , and 5 are the same where he will be inpatient for 1 week each time he receives the antibody (CH14.18). Cycles 2 and 4 are the same and he will be inpatient for 2 weeks but will get to go home over the weekend in between. The first week he is inpatient he receives an immune booster Interleukin-2 to amp up his immune system and prepare his body to accept and utilize the antibody to target the neuroblastoma cells. In between the cycles he receives another immune booster (Gm-csf) which is administered via injection. Lastly the treatment consists of retinoic acid which is taken in pill form. The last cycle (6) he will not have to be inpatient.
He is receiving the same antibody that he did before when he was going through bridge therapy. So we know kind of know what to expect with that, mainly an achy pain in his lower back, headaches, and fevers, to name a few. There aren’t many side effects from the immune boosters but the retinoic acid, which is an acne medication, causes him severe dryness, lethargy, loss of appetite, and upset stomach. The good news is the symptoms subside once he is off of them.
Sawyer has been doing very well with all of it considering. His hair is growing back in and he shouldn’t lose it again since he is done with chemotherapy. Sawyer and Calvin are enjoying the better weather and getting outside and playing. Speaking of getting outside we recently participate in the Lurie Children’s Move for the Kids 5K. Thank you so much to everyone who came to the walk and all of you who donated to Team Super Sawyer!! Because of you we were able to raise over $5,000 for the hospital!! Thank you to all!! Please check out the pictures page for photos from the event!!
Thank you all so much for your support. Please continue to keep Sawyer and our family in your prayers and intentions.
I will try to update more frequently.
Until next time!!
Jen, Jeremy, Sawyer and Calvin
4/10/2019 0 Comments
End of Radiation!!
On Tuesday (4/9) Sawyer had his last day of radiation. Cutting his expected treatment time in half! This was because they were able to radiate Sawyer’s entire field, chest and abdomen, at once. In many cases, like Sawyer’s, they must radiate the chest and abdomen separately because many of the kids can’t tolerate the radiation, their counts bottom out, and they must break the treatment up. This is why we initially received an estimate of 4-5 weeks but as usually Sawyer keeps rocking it and they were able to get everything done in 2 ½ weeks verses the 4-5. His Dr. called him a Rock Star!!
Sawyer is very happy to be done with his treatments, I think because he doesn’t have to get up so early in the morning anymore. The nurses were so sweet yesterday, they gave him and Calvin each a toy and a donut from Do-Rite. Sawyer put his handprint on the Hands of Hope Tree and rang the gong signaling the end of his radiation treatment. We are so proud of him! He handled everything very well and has had little to no side effects from the treatments. Sawyer is done for the rest of the week. He will have a clinic appointment on Monday (4/15) where we will start to talk about next steps in his treatment.
Thank you so much for your support! Please continue to keep Sawyer and our family in your thoughts and prayers! Another reminder about the Lurie Children’s Hospital Move for the Kids 5K on May 19th if you would like to join our team and fundraise with us, we would love to have you if not please consider donating through our team page. Here is the link: Team Super Sawyer. Thank you all for reading!! We will continue to update with Sawyer’s treatment.
Until Next Time!!
Jen, Jeremy, Sawyer, & Calvin
4/1/2019 3 Comments
Hello Everyone!! Sawyer started his second week of radiation today. He has 7 am appointments Monday-Friday at Northwestern Memorial Hospital (which is connected to Lurie’s) and lab appointments twice a week at the Lurie’s HemOc clinic to monitor his counts. So far, he has been doing very well with his treatments, Sawyer has not needed any transfusions for either blood or platelets. He is not happy about having to get up so early and neither are we, but we are happy he doesn’t have to be inpatient right now. We do not have a definite number for how many sessions he will need but his radiation oncologist initially estimated that he would need between 4-5 weeks of treatment. Hopefully we will know more later this week
We also wanted to make sure everyone knew that Team Super Sawyer will again be participating in the Lurie Children’s Hospital Move for the Kids 5K. If you can walk and fundraise with us, we’d love to have you if not please consider donating through our team page. You can access it through the link here: Team Super Sawyer Move for the Kids 5K. We cannot say enough about this wonderful institution that truly is saving our kids lives! If you are able to please be generous!!
Thank you as always for your support! It means the world to us! Please continue to keep Sawyer and our family in your prayers and intentions. Have a wonderful day! We will keep updating as Sawyer progresses in his treatment.
Until next time!
Jen, Jeremy, Sawyer, and Calvin
Hello Everyone! Happy St. Patrick’s Day!! Sawyer is completely done with Stem Cell!! He transitioned to the Ronald McDonald house on February the 21st and received the all clear to go home on February 27th. We were very happy with how everything went with Stem Cell and we were sad to say goodbye to Sawyer’s stem cell team, but we are glad to be able to progress with his treatment. He is officially over the hump! Sawyer’s next steps will be to proceed with radiation. They will radiate the larger mass that is remaining in his abdomen and chest. We have met with the Radiation Oncologist and Sawyer has had his planning session already. He is scheduled to begin his treatments on March 25th. He still has to go into the oncology clinic for labs until he starts but other than that he has been able to stay home.
The radiation process will require him to go to the hospital for daily treatments Monday-Friday but the good news is that he will not have to be admitted. Each appointment will last approximately 20-30 minutes. He will have to be sedated each time because he must be 100% in the exact same position for each session. He should not have too many side effects, but his counts will be monitored on a regular basis to make sure everything is okay.
Thank you as always for reading. Please continue to keep Sawyer and our family in your prayers and intentions. Have a wonderful day! We will keep updating as Sawyer treatment progresses.
Until next time!
Jen, Jeremy, Sawyer, and Calvin
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.