Hello Everyone!!
We have an update on Sawyer. This cycle has been a little harder on him than the others, each cycle he is given a combination of various drugs. One of the drugs he had received this treatment he also had during his first and second cycles, but those were just ½ hour doses and this past cycle was two 6-hour doses. Luckily, he has been feeling well but it completely wiped out his counts and he had to go into the hospital twice, once because he spiked a fever and had low blood pressures and the second for transfusions. But he got through it like a champ. He has been able to go to school this week and has been having lots of fun playing with his friends. He is on track to start his next cycle of chemotherapy on Monday. After this cycle he will be having his surgery. We still do not know when that will be, but we will post when we find out. We want to send a big thank you to everyone who has donated to or is participating in the Move for the Kids 5K!! So far you have helped Team Super Sawyer raise over $2700 for Lurie Children’s Hospital!! This is amazing we cannot thank you enough!! Many of you have been asking about fundraising for Sawyer and our family. Aunt Bridgett had created a Go Fund Me page. You can access the page through this link: Help Sawyer Kick Cancer’s Butt or we have also added a link on the Donate page. In addition to the Go Fund Me our wonderful neighbors The Blevins’ family have offered to turn their annual summer party into a fundraiser for Sawyer. Show Up for Super Sawyer will be held on June 9th from 3-7pm, they will be preparing New Orleans style food and beverages as well as some fun activities for the kids. We have sent out evites but if you have not received one and wish to attend please email Jen at jhunter583@gmail.com and she will send and invitation out to you. It should be a great time we look forward to seeing you all there!! As always please keep Sawyer and our family in your prayers and intentions. Thank you for continued support. Until next time. Jen, Jeremy, Sawyer, & Calvin
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4/17/2018 1 Comment A Little Set Back... UPDATE!!Hello Everyone!! Just a quick update to this post. We received Sawyer’s labs back late yesterday afternoon and they looked great so we are at the hospital this morning and hopefully this afternoon they will be starting his meds. He should be able to go home by Monday. Have a great weekend!
Going through this process has made us realize how little control we have over anything in our lives. As much as we want to be able to plan, get through this, and move on we are regularly reminded that we are at the mercy of Sawyer’s cancer, something he has no control over. Yesterday we were reminded of that fact again. For those of you who have never been through or have know someone who has gone through this process essentially the stars have to align to begin a cycle of treatment, which was what we thought. Sawyer had been recovering from his last cycle beautifully. He was feeling great, playing and running around, no fevers and his counts have been wonderful, well above the threshold for him to receive his next treatment. So, we prepared all the toys, books, clothing, and everything we would need for this next cycle in the hospital. We went into clinic as though labs would be a formality, Sawyer was feeling great, everything was going to be great. Until it wasn’t. For some unexplained reason (even to the Drs.) yesterday morning Sawyer’s counts decided to drop like a brick. The only explanation we received is that possibly Sawyer caught a small virus that did not register a fever or symptoms but brought his counts down. Now, unfortunately, we are in a holding pattern until his counts return. They will take labs on Thursday and if his counts have come back up they will start his chemo on Friday. The good new is that Sawyer is feeling good. As soon as, we got home he started playing and running around just like normal. I think the consolation is that Sawyer gets a little extra playtime with Aunt Lisa. We will post an update when Sawyer can return the hospital for his next treatment. Until then prayers, crossed fingers, etc. Until next time. Thanks for reading as always. Jen, Jeremy, Sawyer, & Calvin 4/10/2018 0 Comments The Principal Gets a Haircut!We have been so blessed with a wonderful outpouring of support for Sawyer and our family as we go through this journey. Especially from the faculty and staff at his school St. Pius X. Last week at drop off the principal, Mr. Dan Flaherty offered to cut his hair in honor of Sawyer and gave him the option of helping. He was a little unsure at first but we told him he was a pro after cutting Daddy and Mommy's hair and after that he thought so too. This morning Calvin and I accompanied Sawyer to school and he helped one of his teachers, Mrs. Chromeck cut Mr. Flaherty’s hair. All the kids really enjoyed it and Sawyer was so happy that Mr. Flaherty was cutting his hair to look like him. Check out the pictures page for some great photos.
Sawyer is doing extremely well this cycle. His counts have remained great. We have not needed to make any extra trips to the hospital for transfusions. We will be going to the hospital on April 16th for his 4th cycle. This will be the last cycle where he will be introduced to new drugs. As always, we will keep you posted with his progress. Please keep Sawyer and our family in your prayers and intentions. Thank you as always for continued support. Until next time. Jen, Jeremy, Sawyer, & Calvin 3/27/2018 4 Comments Cycle 3/ Our New FriendHi Everyone!!
Sawyer has completed cycle 3 of his chemotherapy. We were a little concerned how he would respond to the drugs this cycle because he had never had them before but as usual he did amazing. He hardly had any side effects, mainly tiredness but no nausea. I even remarked to one of the nurses that I was wondering if they were giving him his medicine because he was doing so well. He was up walking around multiple times a day and regularly went to the playroom. He even added a couple new LEGO sets to his growing collection. Sawyer made a new friend this visit. Out of respect for her family and their privacy at this time we will only say that she is a little girl the same age as Sawyer. They just recently came to the hospital and are in the process of determining a final diagnosis. While we do wish that we had met her and her wonderful family under different circumstances, we do hope that our friendship will help in some way as they go through this trying time. It was not that long ago that we were in their position and sometimes it helps to have someone to talk to that knows what you’re going through. All too often we forget just how much strength our children have, throughout this entire process Sawyer regular shows us his. Most of you know that we don’t hide Sawyer’s illness from him. But we do try to explain it to him in ways he can understand (with a little help from the Child Life Specialists at the hospital). He knows that he has a sickness called cancer and that it made the tumor in his back and we go to the hospital, so he can get the special medicine that will eat the tumor. The medicine is to help him feel better and make the tumor go away forever. Well the other day Jeremy and Sawyer were in the playroom when his new friend and her parents came in. While they were playing Sawyer started telling her about his tumor and she said that she has one in her belly. Then he helped her to understand that the special medicine will eat her tumor too. Well she told her sibling exactly what Sawyer told her and then they told their cousins. We were so proud of how he helped his new friend and her family understand what was going on with her. We know that you don’t know them but please keep this family in your prayers and intentions as they go through this difficult process. Sawyer does not have any scheduled procedures before his next chemotherapy cycle which is slated to begin April 16th. But we will keep everyone updated as always. Thank you all for your continued support and prayers! They mean so much to our family. Thank you again for reading! Until next time. Jen, Jeremy, Sawyer, and Calvin Hello Everyone!!
When Sawyer started to lose his hair both Jeremy and I kept telling him that we could cut our hair to look like him if he wanted us to. Well about two weeks ago he asked us if we would do it. So last Sunday (3/17) we invited our neighbors over and did just that! He was so excited, and we were so happy to do it for him. I will post some pictures in the photo section. As for Sawyer’s recent procedure his stem cell collection went very well! The medicine they gave him to release his stem cells caused him to have some aches, especially in his back, but doses of Tylenol helped him to relax and sleep. It brought up his white cell count so high that the chemotherapy may also give him some relief. They analyzed the stem cells they collected from his first day and they needed to collect 2 million per kilo. Sawyer produced 21 million per kilo!! His Drs. were surprised that he was able to produce that many cells, given his age and size. They got all he will need and more from his first day that he only needed to be hooked up for half the day to get some extra cells. If all goes well he will be starting his 3rd cycle of chemo this evening (3/23). We will keep all of you posted with how he does. As of right now he will be going home late Tuesday afternoon/evening. Thank you all for your continued support and prayers. We appreciate them so much! Until Next Time!! Jen, Jeremy, Sawyer, & Calvin 3/18/2018 5 Comments Just a Quick Update...Hello Everyone!
Just wanted to do a quick update. We haven't posted recently because Sawyer has been doing very well the past couple of weeks! The week before he was able to start back at school. Sawyer has been doing half days instead of our usual full days, but he was able to go all three. He only went one day last week because of appointments and scans. He is so happy he can go to school and play with his friends! I went with him the first day and we read the story Marvelous Marleigh to his classmates. It is about a little girl who also has cancer. They seemed very receptive and did not ask me a single question about Sawyer's cancer, so I know it's not a big deal to them. We finally have dates for Sawyer’s upcoming procedures. He will begin his stem cell harvest on Thursday (3/22). It will last 2 days so he will be there Friday (3/23) as well. Then Sawyer will be admitted Friday evening and will start his 3rd round of Chemotherapy. If all goes accordingly he should be able to come home Tuesday evening (3/27). Sawyer has asked Jeremy and I to change our hair to be more like his. We are having a little party at the house tonight so stay tuned for that update!! Thank you all for your continued support and prayers! We love you all! I will post some recent pictures in the photo section. Until Next Time. Jen, Jeremy, Sawyer, & Calvin 3/4/2018 2 Comments Stem Cell Harvest & TransplantHello everyone! Sawyer is finishing his second cycle of chemotherapy he had one more treatment today. This is the only cycle he can have outpatient and he has been happy about being able to go home every night. He has been doing very well, not too many side effects, mainly just tiredness. We wanted to share with all of you some more information we have been given about Sawyer’s treatment. Specifically, what will happen with Sawyer’s stem cell harvest which will take place sometime before cycle three as well as more of what stem cell transplant will look like.
After Sawyer completes his chemotherapy treatments he will be having two Autologous Stem Cell Transplants. These transplants will utilize his own stem cells which will be harvested and given back to him after he completes his last cycle of chemotherapy. What are stem cells? Stem cells are immature cells that can grow into different types of blood cells including white blood cells, red blood cells, or platelets located within the bone marrow inside the bone. Sawyer’s chemotherapy will not only destroy his cancer but also his stem cells that is why he must have the transplants to restore or rescue the bone marrow function specifically the production of red blood cells, white blood cells, and platelets. Stem Cell Harvest Over the next couple of weeks Sawyer will be given a specific drug which will cause his stem cells to move out of his bone marrow and into his blood stream. His blood counts will be monitored very closely and when they reach the appropriate level he will come to the hospital. There he will be attached to a specialized machine which will pull out his blood take the stem cells out and then put the blood back into him. (Think donating platelets, but more intense.) This procedure will not hurt him and will utilize the existing line he already has. The only thing he may suffer from is boredom. The process will take two days, eight hours each day and he will not be able to leave his bed. The good news is he will be able to come home at night in between. After the cells are harvested he will begin his third cycle of chemotherapy. His chemotherapies will be increasing in intensity from this point on, cycles 3 and 5 will be the same and cycles 4 and 6 will be the same. Each require him to have a large amount of fluids which is why he needs to be admitted. Stem Cell Transplant While we are just beginning to learn all the details of what transplant will entail we do know that it will take place between August and October which is not during flu season luckily. Each treatment will take between 4-6 weeks which Sawyer will have to stay in the hospital for the entire time. He will be able to go home in between but we are not sure when that will be and for how long. But during this time, he will be extremely susceptible to illness and infection. We want to thank all of you for your help thus far, all of you have been so wonderful! But we don’t want to burn all of you out now because it looks like transplant is when we are going to need a lot of help. Just a reminder about the Lurie Children’s Hospital Fundraiser 2018 Move for the Kids 5K Walk/Run don’t forget to donate to Team Super Sawyer!! http://foundation.luriechildrens.org/site/TR/MovefortheKids/MovefortheKids?team_id=36786&pg=team&fr_id=1780 Thanks again for reading our posts. Please send good vibes and prayers to Sawyer and our family. We love you guys. Until next time! Jen, Jeremy, Sawyer, & Calvin 2/27/2018 4 Comments February 27th, 2018Hello. We had such a fantastic weekend with family and friends celebrating Sawyer’s 4th Birthday. We would like to thank everyone who came to celebrate with us. Sawyer was so happy to see everyone of you. In addition thanks to everyone that has sent boxes full of stuff. Sawyer has so much fun opening the boxes and seeing all the fun and activities inside. I especially like helping Sawyer build all the new Lego sets we got this week. Something really therapeutic about building those Legos.
Sawyer was seemingly back to his normal self the past week while we were at home. He enjoyed playing with his toys, soaking in Netflix on the couch, and most importantly sleeping in his comfy cozy bed. Yesterday Sawyer had an outpatient procedure done to place a central venous catheter into his chest. This catheter is more long term than the peripheral inserted catheter he had inserted in his arm. It lasted about 2 hours total, and he was quite upset when he woke up due to some discomfort but was able to calm down. We were discharged in the late afternoon and he was very excited to get home. He said to me last night, “Daddy, I’m starting to get used to the hospital.” I wish he didn’t have to, but glad he is more at ease with taking trips to the hospital. As Jen mentioned in the previous blog post round two of chemo starts this week! This one is outpatient so we will be able to sleep in our own beds for this round. This year on May 20th there is the Move for the Kids 5K Walk/Run. Jen’s sister Bridgett has started a team, and we would like to invite anyone to join us in the walk/run. If you are unable to participate please you can support by donating to our team. Join or donate here. foundation.luriechildrens.org/site/TR/MovefortheKids/MovefortheKids?team_id=36786&pg=team&fr_id=1780 Thanks again for reading our posts. Please send good vibes and prayers to Sawyer over the next couple days as he goes through more treatments and be sure to check-out the photo page for awesome birthday pics. Thanks, Jeremy, Jen, Sawyer and Calvin 2/22/2018 4 Comments Home Again...After 8 additional days in the hospital Sawyer came home on Tuesday! The fluid was no longer building up around his tumor and he was breathing significantly better, so they removed his chest tube on Monday. His counts were good, and he had no fevers, so he was cleared to come home. He is very happy to be home, he has been eating well and playing with his brother. We are so happy that he will be home to celebrate his 4th birthday! Sawyer is very excited for his birthday party. We have many things to celebrate this birthday. On Monday he will go to the hospital for the day, he will have a procedure to remove the PICC in his right arm and have a CVC put in his chest. Then on Wednesday Sawyer will begin his second cycle of chemotherapy. We are continuously astounded at Sawyer’s strength and we know that he will get through this process amazingly. I know a couple of you have asked about Sawyer’s treatment plan (roadmap) it is laid out something like this and will be the better part of a year and a half. Chemotherapy (6 cycles, each cycle 21 days) Approx. 6 months-->Surgery in between cycles 5 & 6-->Stem Cell Transplant (Using his own cells) Approx. 2-3 months-->Radiation Approx. 2-4 weeks-->Immunotherapy Approx. 6 months We want to thank all you for your prayers and well wishes!! They mean so much to us during this difficult time. A big thank you to our village for all your help. We have no idea how we would get through this without you!! Until next time. Jen, Jeremy, Sawyer, & Calvin 2/17/2018 6 Comments Never In A Million YearsHello everyone. Welcome to the blog and thanks to everyone that has helped us through these first few weeks after discovering the most shocking news we have ever received. It has been a long journey so far and will continue to be, and we are fortunate to have such a great support system to aide us through these early days.
Late in 2017 Sawyer began to complain about having some back pain. He was not acting like his normal self, was tired, always wanting to lay down and at times just lethargic. Thinking that it was highly unusual for a child his age to complain of their back hurting we saw our pediatrician who recommended we visit an Orthopedic Doctor who specializes in childhood growth issues and scoliosis. The specialist found nothing of concern with Sawyer's spine and told us to keep an eye on it. During this time we noticed a swollen lymph node in Sawyer's left armpit, we were told that it could be attributed to a small case of pneumonia Sawyer had been battling for a few weeks, but to mention it to the Dr. during our scheduled follow up appointment we had later that week. After seeing Sawyer’s swollen lymph nodes in combination with all of his other symptoms our pediatrician immediately told us to go to the emergency room at Lurie Children's Hospital because he was concerned that this was much more serious. Once in the ER they confirmed our Dr's suspicion and told us that due to location of the swollen lymph nodes and the size that is was highly likely that Sawyer had cancer. This word came as a shock, and as you can imagine our hearts and our world stopped. Here is our sweet little boy who loves riding his bike, playing with friends and watching Daniel Tiger, and now he is about to go on a fight that will affect him and us for the rest of our lives. Never in a million years did we think we would have to go through a fight such as this. The next day Sawyer under went a CT scan and biopsy. The scan revealed a tumor located in the midsection of Sawyer's back that was pushing into his spinal column causing the pain he was experiencing. The Oncology doctors immediately began to put a treatment plan together. A few days later the biopsy of the lymph node confirmed what the doctors had expected and Sawyer was officially diagnosed with Stage IV Neuroblastoma. Please follow the link at the end of the blog post to learn more about Neuroblastoma. They also informed us his form of Neuroblastoma is not genetic and Calvin does not have a higher risk of developing it. The days following the diagnosis were filled with tests to provide doctors and specialists a baseline on Sawyers, cell counts, hearing, heart health and bone marrow. A specialized nuclear scan was done to determine where the Neuroblastoma cells were in his body followed by another CT scan of his head to ensure the cancer had not spread to the brain. He began his first chemotherapy treatment on February 2nd, just one week after diagnosis. We were discharged from the hospital on Thursday the 8th two weeks after we first came in to the Emergency Room. While we were in the hospital the Drs and nurses did a very good job of explaining what the treatment would be like and laid out a tentative timeline for treatment and recovery. Jen and myself prepared ourselves for the long journey to cure our son. We braced ourselves for the concept of treatment but had yet to consider any bumps that may come along the road. Unfortunately for us, we hit a bump just three days after being discharged. Early in the morning on the 12th Sawyer was very restless and couldn't sleep, due to stomach and back pain. Upon taking his temperature we notified the Oncologist on call that he was running a fever and later that morning was told to bring Sawyer back to the hospital because his counts were low, and the doctors were worried about his ability to fight off an infection should he have one. During this visit doctors discovered that the tumor was producing an excessive amount of fluid and this fluid was compressing Sawyer's left lung causing the shortness of breath and fever. A chest tube was placed to drain the fluid. This tube is still in place today and we are waiting on word that all of the fluid is drained. Sawyer is doing much better, and is in great spirits. He has proven to be such a little fighter and is definitely our BBB"BIG,BRAVE,BOY" as Jen calls him. He understands what is going on as much as a 4 yr old can. I tell him he doesn't have to get better all at once, all he has to do is get a little bit better everyday. We are very lucky to have such a great support system around us at this time. My sister Lisa as well as Jen's parents and sister have been helping us with taking care of Calvin. Our Neighbors and family have provided food and support, and have proven that we have a great village to help us along the way. We cant thank all of them enough. Jen and I hope to be back here to provide updates as we move along in the process, so please check back as often as you would like. Please keep us in your thoughts and prayers as we will need them along the way. All of our Love, Jeremy, Jen, Sawyer and Calvin https://www.cancer.org/content/dam/CRC/PDF/Public/8758.00.pdf |
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
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