2/27/2018 4 Comments
February 27th, 2018
Hello. 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.
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.
Jeremy, Jen, Sawyer and Calvin
2/22/2018 4 Comments
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 Years
Hello 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
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.