UPDATE (11/10/24) So a lot of people have reached out and had some questions about what Cayden’s next step in treatment is. Although his scans are coming back clear we have to finish this aggressive treatment plan and the last part of it is proton radiation therapy. We are doing this at the Pediatric Radiation Oncology center connected to CHOP in Philadelphia. His treatment plan will be 30 total sessions of radiation. This will be weekdays for about the next 6 weeks. We will be staying at the Ronald McDonald House during the week and come home for a night or two over the weekend. Because of Cayden’s age and how exact the radiation needs to be administered he will be put under anesthesia every time. They typically do the children who get put to sleep first thing in the morning so we have to be close by. We will not have close access to our vehicle and will be shuttled to and from the hospital from the Ronald McDonald house everyday. With him getting his radiation in the morning this should allow us time to explore and find some activities to keep us occupied. The Ronald McDonald house has a lot of activities and sometimes tickets to museums or football games and such so hopefully we’ll be able to see new things! But financially it’s going to be rough, lots of fuel, vehicle maintenance, food/groceries, and public transportation (which if anyone has any advice for ways to get around Philly, I’ve never really used subways or buses so this will be a huge learning experience for us). It’s going to be a long six weeks but if all goes according to plan and there are no delays we should be done by December 23rd. Praying so hard that we can get through this and be home together for Christmas and enjoy being done with treatments!! (HOPEFULLY!)

We are leaving tomorrow to get checked into the Ronald McDonald house (if they have a room available, if not a hotel room was reserved for us and will be available until we can go to RMH). His first day will be Tuesday and hopefully everything is ready to go and will go smoothly. Jesse is going to be working part time so he can be there Mondays and Tuesdays with us. Those of you who know Cayden know he is a ball of energy and we’re gonna have a fun time keeping him occupied! Please keep us all in your prayers, safe travels, safe treatments, peace for everyone, JayLynn as she’s goes through so much also, missing me and her brother a lot. Everyone’s lives is such a roller coaster but the end is in sight and we just have to keep pushing! Thank you so much to all of our family and friends who have loved and supported us in so many ways through Cayden’s battle. We love and appreciate every single one of Cayden’s supporters! once I have room information I can provide an address if anyone would like to send cards! They brighten our days!

UPDATE: We are now at the beginning of his 3rd cycle which began his high dose chemo and bone marrow transplant. The side effects will be slowly starting but he has been having a lot of nausea already. We are expected to be here 28 days each cycle if all goes well. The side effects are going to be much more serious and he will be very very sick again. It’s going to take some time for his body’s counts to recover from this high dose chemo. And he has to do it three times. He has many diet restrictions and isolation protocols that we have to be careful with. The cycle start dates as of now are June 28th, July 28th, and then August 28th. We already had to push the start date back because one of the scans he was scheduled for showed he had blood in his brain where the tumor was resected from. Thankfully it was old blood and there was no signs of infection or current bleeding. But that still meant a second surgery with two incisions and a nice big panic attack for us as parents. He made it through that like a champ and had a few good weeks at home before his next cycle started. So here we are again watching these medicines make him extremely sick and full of sores and in pain. It’s heart breaking. But it’s his best shot at living a full happy life and he’s a fighter and he’s gonna get there! Thank you so much to everyone who has donated, it means so much to us! Thank you to everyone who shares our story and reaches out to us to see how we’re doing! We have a long road ahead still but we know we’re not alone!

Our story begins on March 11th when after complaining of headaches for a few weeks and losing his balance more often and losing his appetite we took Cayden to the emergency room. They ran labs and did a CT scan quickly and they soon came back with the news that they could see a 5 cm mass in his left frontal lobe, about the size of a golf ball. They immediately called children’s hospitals to see who could take us and we were shortly flown to UPMC in Pittsburgh. They had him in surgery within 24 hours of us landing. They were able to remove the entire mass and believe they got everything. The surgery went great and Cayden quickly healed from that. The next day the oncology team came to meet us. They brought unfortunate news that the tumor is cancerous.

Then on March 20th, we got a call with his official diagnosis. He has an Atypical Terratoid Rahbdoid Tumor also known as ATRT. It is a rare and very aggressive brain cancer. The odds are about a 50/50 chance that he’ll live the next 5 years. He is going to have to have very aggressive treatment (ACNS 0333) which includes 5 different cycles of chemo followed by 30 treatments of radiation. This will take about 6 months in total to complete.

Right now the chemo isn’t causing many awful side effects, so far just mild things we’ve been able to manage. The 3rd-5th cycles of chemo are going to be awful though and we will likely be admitted to the hospital up to 3-4 weeks at a time, back to back so we will be lucky if we get a few days at home this summer. He is going to have to isolate a lot during that time and that is very hard for a four year old to understand. Then 30 treatments of radiation that we will complete at the Children’s Hospital of Philadelphia, that will be 5 treatments a week, Monday thru Friday for 6 weeks if all goes well. We have been delayed already a bit due to counts not being where they needed to be so hopefully we can be all done in the time we’re expecting.

We have this go fund me set up to help with all the different expenses that go along with living in a hospital and traveling back and forth. We’ve already had one unexpected 9 day stay between cycles and it is definitely hard on everyone. Fuel, food, vehicle maintenance, bills, and everything adds up and we have a long road ahead of us. If you can’t donate please share the link! The easy part of his battle is done and now it’s getting hard. Keep the prayers coming and keep an eye out for any events we might be doing for him. Thank you all so much for all of the love and support so far. We are going to need our army behind us for this.

#caydentheconquerorstrong