Hello Everyone!
Last week Sawyer went for some updated scans and tests in preparation to start his Stem Cell transplant on Wednesday (8th). On Monday we had a meeting with his Drs. to discuss the results. The good news is that everything is diminished and there are no new spots, in fact some spots are gone completely. However, the larger mass along his spine and throughout his chest has not diminished enough for his stem cell treatments to be effective, think of a melting snowball the exterior is dying off, but the interior is still active. We do not want to put him through such a strenuous treatment if it’s not going to yield the results we want. Thankfully his Drs. have come up with an additional treatment plan which will consist of a combination of chemotherapy and immunotherapy. His schedule will be more like his chemo schedules have been where he will only be in the hospital for a week and he will have a couple weeks at home and then go back. He will have 2 rounds of this treatment and then they will assess him again. If all looks good he will have another 2 rounds and then Stem Cell transplants. There is the possibility that his Drs. may change is his treatment schedule more but its all about finding what is best for him and what is going to be the most effective. He will start the first round of this treatment on Monday the 13th. As always, we will keep you posted! Thanks for reading! Please continue to keep Sawyer and our family in your prayers. Until next time! Jen, Jeremy, Sawyer, and Calvin
2 Comments
Hello Everyone!
Sawyer was able to come home last Tuesday. He did not have an appendicitis or intestinal inflammation. They have attributed his fever to neutropenia and sores that developed in his lower GI Tract. He has been on antibiotics and is feeling much better. He’s been playing and enjoying the beautiful weather we have been having. He had a lot of fun celebrating his brother Calvin’s 2nd Birthday. We were able to have our meeting with Sawyer’s stem cell Dr last week. On Tuesday (7/31) he will be having updated Echocardiogram, EKG, and Audiology tests and then Wednesday (8/1) he will have CT and MIBG scans as well as an updated bone marrow aspiration. I never thought in a million years I would speak so matter-of-fact about my child undergoing procedures like this but here we are, this is our life now. As long as everything checks out with his scans and his Drs. are happy with his progress he will be begin his first stem cell treatment on August 8th. He will be given high dose chemotherapy for 7-8 days. A couple of the drugs he has had before but he will have at least 1 new one. They will be in much higher doses then he has had before. After the chemo he will receive his stem cells. He will be very tired and more than likely will develop mouth sores (~90% of kids do) which will require a feeding tube because it will be too painful for him to eat. About 15-17 days after he receives his stem cells his counts will start to recover, and he will start to feel better but for about 3 weeks he is going to be feeling pretty terrible. Please continue to keep Sawyer and our family in your prayers and intentions especially as he begins this part of his treatment. Thank you for your support and for taking the time to read our posts. Until next time!! Jen, Jeremy, Sawyer and Calvin UPDATE: Well we are back at the hospital. Sawyer spiked a 101 fever yesterday (7/19) afternoon and Jeremy brought him in. They are unsure of the cause of the fever. Initially it was thought that he might have an appendicitis or intestinal inflammation but the tests they have done are inconclusive. Right now they are treating his fever and monitoring his abdominal pain. At this point we do not know when he will be discharged.
Hello Everyone! Last week Sawyer completed his 6th and final round of chemo!! He was there from Monday to Wednesday and everything went very well. He even got a mini break on Monday. There were quite a few admissions and Sawyer couldn’t get a bed until the afternoon, so he and Mommy got to take a bus ride to Navy Pier to have lunch and ice cream and a little bit of boat watching. Apart from some tiredness Sawyer has been experiencing very few side effects. He’s amazing! We are so proud of him!! As long as he doesn’t have any fevers (fingers crossed) he should not have to be admitted until he starts stem cell treatments. We will be going to the hospital on the 23rd to meet with the stem cell team and go over all the details. On the 31st Sawyer will be going in for the day to have and updated MIBG scan (meta-iodobenzylguanidine), CT scan, and bone marrow aspiration to check his progress. If everything looks good he will begin his first transplant sometime in the beginning of August. As of right now the timeline we have been given for transplant looks something like this: Sawyer will be admitted he will be given medication to prime him for receiving his stem cells for about a week. He will be given his stem cells and will be monitored in the hospital for 3-5 weeks. Then he will be discharged to the local Ronald McDonald house for a couple of weeks. He will return to the hospital for his 2nd transplant which will have the same 4-6 week timeline as the first one he will then go to the Ronald McDonald house for another couple of weeks and then will be discharged home. This is just an overview of the stem cell time line. We will know more Monday and keep you all updated as things progress. As always please continue to keep Sawyer and our family in your prayers and intentions. Thank you for your support and for taking the time to read our posts. Until next time!! Jen, Jeremy, Sawyer and Calvin 6/20/2018 0 Comments Fundraiser!!Hello Everyone!
We have been so busy with Sawyer’s surgery we didn’t get to do a post about the fundraiser. On June 9th our neighbors threw a wonderful fundraiser for Sawyer and our family. We were blessed with an absolutely beautiful day, we had rain in the morning, but it stopped about lunch time and then sun came out. It was a great day filled with friends, family, food, and fun! I’m pretty sure everyone had a great time especially the kids! We are so thankful to everyone who came out and showed their support, but we want to take a moment to thank all of those who made the day possible. A big thank you to the Blevins and Mann families! Jen, Jason, Ben and Becky thank you so much for your organizing, cooking and you support. You are amazing! Everything was perfect, you guys definitely knocked it out of the park! We do not have words to fully express how grateful we are to have you in our lives. Your friendship has meant so much to us. Thank you for all your help. We love you! Thank you to all our silent auction contributors!! Especially to Theresa Lokatis for the beautiful gift baskets. Everyone loved them!! Hanane thank you for the items you donated and all your help. You’re the best! Another big thank you to our neighbor Jenn for the delicious cake you made! Thank you to all our neighbors and friends who let us borrow items. All of you have been so wonderful we could not have asked for a better neighborhood. At the fundraiser I shared a story about when we first came to the ER at Lurie Children’s Hospital. The ER Dr. confirmed our pediatrician’s initial thoughts that Sawyer did have cancer and he used the word Neuroblastoma. This was the first time I had ever heard this word so after he left the room I got on my phone and I typed the word in and it popped up with the search results and underneath the word Neuroblastoma was the phrase “very rare” and I was taken back for a second because something is only “very rare” until it happens to you and then it becomes “very REAL.” In an instant our lives changed forever. There was hardly any time to process everything before we were thrust into dealing with this very new reality: in and out of the hospital, multiple surgical procedures, chemotherapy drugs that we can’t even pronounce, regular nurse visits, daily line flushes and all while dealing with the regular occurrences and necessities of life. We realized very quickly that we were not going to be able to this by ourselves. Thank you to all of you who have really stepped up for us! All your help with childcare, with meals, check-ins it has meant so much to us. We love you all!! Sawyer will be going back on the 9th to start his 6th round of chemo. As always please continue to keep Sawyer and our family in your prayers and intentions. Thanks for reading. Jen, Jeremy, Sawyer, and Calvin P.S. Don’t forget to check out the pictures page for some fun photos from the fundraiser. 6/20/2018 2 Comments Surgery UpdateHello Everyone, we wanted to post an update about Sawyer since his surgery. Thank you for all your prayers and support Sawyer is doing amazing! We can’t believe that just a week ago Sawyer had a major operation. When he was initially sent to the PICU he had an intubation tube down his throat, an NG tube down his nose draining from his belly, a chest tube, a belly drain, a foley, an arterial vein IV monitoring his blood pressure, and two additional IVs in each arm. As well as a hockey stick incision which runs along his left side past his belly button up to just under his nipple line. We have slowly been monitoring his progress by when his tubes are removed. He was having fevers the first couple of days which did require some extra pokes and a little bit longer stay in the PICU, but all of his cultures came back negative and the fevers subsided. He has been moved off the PICU floor and is currently in Acute Care with only his belly drain remaining. All his surgeons and his team are very happy with his progress. He has been able to eat whole food for the past couple days, is having normal body functions and has not been having any issues with nausea (thank goodness). Hopefully they will be able to remove his drain tomorrow but either way tomorrow we will be going home. Sawyer is an amazing little boy, he completed a big hurtle and we are so proud of him. He will be starting his last round of chemotherapy in about 2 weeks. Thank you all again for your prayers and support! Until next time! Jen, Jeremy, Sawyer and Calvin 6/13/2018 6 Comments Surgery DayHello everybody, today is surgery day! Sawyer just went back to the OR. Surgeons called us in a bit earlier than expected but still anticipate the surgery lasting around 6 hours. We will try to update this post when we get updates.
Update 12:30 PM- The surgeons have started the procedure and are starting to move towards the tumor. Thing are going well and we should expect to hear more in 1-2 hours. Update 2:40 PM- We were just informed things are going well. The Doctors are slowly making their way through to remove parts of the tumor that they can. Will probably be in surgery for a bit longer. Update 4:40 PM - Doctors are still working on removing the tumor. They have mainly been working in his abdomen, but now are moving to remove what they can in his chest. They estimated it taking a few more hours . They said he is doing very good. Will do another update in a few hours! Update 5:45 PM One of the surgeons just came in to the waiting area, they are done removing the tumor and closing up his chest and abdomen. She said the removed at least 50% of the tumor and was happy with the results. He will be transferred to the ICU when completed, and will likely keep the breathing tube in overnight as a method to reduce pain he would experience. They are unable to do an epidural block due to the location of the tumor along the spine. We are waiting for them to finish closing up the incision, before heading to post op, them ICU. Update 7:00 PM Sawyer is out of surgery and being transferred to the ICU. The surgeons were pleased with the results of the surgery. Jen and I are waiting to be called to the room to see him. He will have the breathing tube in for at least tonight and maybe tomorrow which means he will be asleep. Total surgery lasted nearly 8 hours. Update 6/14 9:15 AM. Hello everyone. Sawyer is doing well, and he had a good night. He is still on the ventilator be to let him rest today and limit his movements. He has such a large incision they do want to give it time to start to heal. He also did receive a lot of fluid which is pushing a little on his lungs, he is rather puffy and swollen he needs time to let those fluids absorb into his tissues. He is being given various drugs to keep him medically paralyzed as well as controlling his pain. The Drs. just rounded and it sounds like if he keeps progressing the way he has been they will be taking him off the ventilator tomorrow.. Hello Everyone!! As most of you know our wonderful neighbors are having a fundraiser for Sawyer tomorrow Saturday, June 9th. If you have not yet RSVP’d please do so. This will be combined with our neighborhood block party so from 2pm until 8pm S School St will be closed from E. Madison St. to E. Washington Blvd. Please check out the enclosed map for parking suggestions. It should be a wonderful day! We can’t wait to see you all!! Don’t forget to wear your Super Sawyer shirt if you have one!!
If you are not able to attend but wish to contribute Sawyer’s Aunt Bridgett has created a Go Fund Me account for him. Here is the link Help Sawyer Kick Cancer’s Butt . Thank you all so much for your support for Sawyer and our family! Love to you all!! Jeremy, Jen, Sawyer, & Calvin 6/6/2018 3 Comments Field Day/Sawyer's Next StepsOn May 25th Sawyer’s school, St. Pius X, hosted their annual field day. Calvin and I joined Sawyer and his class. They participated in lots of fun activities: bubbles, hula hoops, sidewalk chalk, dancing, and free play. All the kids had a blast and Calvin acted like he was one of the kids in the class, we’re pretty sure he’s ready for school in the fall.
The field day was very special for us because the Student Council sold T-Shirts as part of a fundraiser they had for Sawyer. It was so wonderful seeing all the students and faculty in their yellow shirts showing their support for Sawyer as he goes through his treatment. Another big thank you to the St. Pius X community for everything you have done for Sawyer and our family it has been so wonderful!! Please check out the photo section for some fun pictures! We have some new information regarding Sawyer’s treatment. On May 29th we took Sawyer to the hospital for an updated CT Scan in preparation for surgery. Last Friday Jeremy and I had a meeting with Sawyer’s surgeons to discuss them. Sawyer’s tumor has not reduced in size much, but it has stopped growing and has not spread anymore, so he will be having surgery as planned. His surgery will be on June 13th and will be approximately 6+ hours. They will be going in threw his abdomen and remove what they can from his abdomen and chest. They will not be able to remove everything, but they will be removing more than 50%. He will be in the hospital for 5-7 days after surgery. Neuroblastoma wraps around the blood vessels which makes it difficult to remove all of it surgically. Surgery is just one piece of the puzzle and the remainder of the tumor will be removed during the rest of his treatment. This is a big hurdle for Sawyer so please keep him in your prayers and intentions!! Until next time. Jeremy, Jen, Sawyer, and Calvin 5/30/2018 0 Comments Chemo Cycle 5/ Move 4 The Kids!!Sorry Everyone!! I’ve been a little behind lately. Sawyer completed his 5th cycle of chemo the week of the 14th and he was amazing! He did not get sick and had no significant reaction to the medication (just fatigue and crabbiness, but I can’t really blame him). A big thank you to Grandma and Baba Williams and Aunt Lisa who came up to help and spend time with Calvin while we were at the hospital. Now we will be preparing for surgery which is tentatively scheduled for June 13th. We will keep all of you posted as we get closer to that
day. Team Super Sawyer participated in the Lurie Children’s Move for the Kids 5K on May 20th. Thank you so much to all of you who came from near and far to support Sawyer and all of the kids who are treated at this wonderful institution. Sawyer was even able to participate in the kids dash he was so proud of himself! In typical Chicago fashion the weather did not want to cooperate it was cold and began raining right before the race started but many of you stuck with it and ran or walked. We are so thankful to all of you who supported Team Super Sawyer we were able to raise over $3,000 for the hospital!! Please check out the photo page for some great pictures. Thank you all for your support. Please continue to keep Sawyer in your prayers and intentions. It means so much to us. Thank you again for reading! Until next time!! Jen, Jeremy, Sawyer and Calvin 5/9/2018 1 Comment We've Got T-Shirts!!UPDATE: We have SOLD OUT of Medium size shirts. We still have youth XS, Adult Large, and X-Large available but we’re not sure for how long. So get your orders in soon!!
Happy Mother's Day, we hope you all had a wonderful day!! We just wanted to let you know that Team Super Sawyer T-Shirts are here!! In addition to the fundraiser for Sawyer we are selling the shirts for $15 and we have them in Youth XS (equivalent to kids 4/5), Adult M, L, and XL. They are in the grey color that Sawyer is wearing. If you are not able to purchase one from us in person we will be taking payments through PayPal there will just be an additional charge for shipping. Please email Jen at jhunter583@gmail.com and she will be happy to send you the link with instructions. Thank you all for your support! FYI If you are registered with Team Super Sawyer in the Move for the Kids 5k our team has qualified for free t-shirts. These shirts are in addition to those. |
Sawyer's Parents
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. Archives
July 2021
Categories |