In October of 2018 we took Peyton, our 8-year-old daughter, to her pediatrician due to quite a bit of sudden weight gain and also signs of early puberty. We got blood work done and she had hormone levels way out of normal range.
We ended up getting an MRI a few weeks later and got a phone call hours afterwards by her endocrinologist referring us to a pediatric oncologist.
Our insurance approved us to see a doctor from PCH and we were happy because we didn’t think they would due to them being out of network. When we called to schedule the doctor saw her file and said to go to the emergency room that day.
We left right away and spent the next 6 hours in the emergency room trying to get admitted only to find out our insurance wouldn’t approve a stay there, but just to see their doctor.
We ended up being transferred around midnight to Thunderbird Hospital. We spent the next 4-5 days there prepping for surgery to remove a tumor and her adrenal gland on her right side.
The oncologist told us this should be fairly simple to go in and remove the tumor and no chemo would be needed. The day before surgery the surgeon called us in a small room to go over the new film they got in from the CT scan. He showed us that the tumor was completely surrounding the IVC which is the main vein returning blood to the heart.
He said they did not have the equipment there to do a heart bypass on her and would need to add a children’s vascular surgeon to the team. We then had to go home and wait for a spot to open up at Cardon Children’s Medical Center in Mesa.
We had about 4 days in between so we took all the kids out of school and did a “Peyton week”. We went anywhere she wanted to eat, to play, did BBQ’s with friends and late night fires in the driveway.
We finally ended up at the hospital and what was supposed to be a 3-4 hour surgery ended up being 10 hrs. The tumor had invaded the IVC much more than they knew.
She kept bleeding during the surgery as they removed the tumor due to it being so vascular. They ended up cooling her body with ice and stopping her heart and all blood flow for 25 minutes to complete the surgery, but as they warmed her body back up and restarted her heart, the vascular surgeon was removing the bypass when he noticed a lump in her heart.
Before he could grab it, it moved through to her artery towards the lungs causing a pulmonary embolism. He was able to retrieve the piece eventually but due to the tumor spillage they assured us that microscopic pieces of it moved through her body.
They ended up removing a tumor that weighed just under a pound and she set a hospital record for the most blood used during surgery (they actually ran out and had to switch to O+).
They closed her up except for her stomach because there was too much swelling. They taped a sponge over it with a low pressure vacuum to remove the fluids that would build up around the area they did surgery.
Peyton had tubes in each side of her chest between her ribs to drain fluids from the chest and heart. There were so many IV’s and different medications it was a very scary time.
She was sedated and they planned to leave the breathing tube in for 3-4 days to let her recover from the tremendous stress her body went through.
The surgery was completed Thursday night and by Saturday morning she started to twitch a bit and when I asked if she could hear me she nodded her head. They were surprised because she was still on medicines to paralyze her.
She was trying to tell us something but could barely nod or shake her head. We played 20 questions and figured out she wanted a pencil and her note pad. She tried to write but could barely move. They decided to lessen her meds so she could move but she still couldn’t talk because she was intubated.
She could finally write and drew a heart and wrote PB&J for Peyton, Britt and Jake.
They decided to remove the breathing tube later that day and the first thing she did was turn to me and tell me “I AM SO HAPPY.” Needless to see she melted our hearts.
The next day they removed her chest tubes and by Monday she was walking to the playground. The surgeon was beyond amazed at her recovery and said she was surpassing his best case scenario for healing. We all went home a little over a week after surgery and she has been home recovering since.
We have been doing all the natural things we can to help her heal and have agonized over the thought of doing chemo or not. She believes she is healed and wasn’t to keen on chemo either but said she would do whatever we thought was best. After two long conversations with the world specialist on this in kids we decided to try chemo.
She was scared and had tons of questions on the way to the oncologist, but after the appointment she decided to make the best of it and was starting to get excited about all the different color wigs she was going to buy.
Through all of this she has never once complained or been angry that she has to go through this. The odds are against us but that doesn’t matter to her or us as we believe everything happens for a purpose.
Peyton heard me (dad) and her mom discussing a bill we got for Phoenix Children’s Hospital emergency room that wouldn’t be covered by insurance. She came over to me and put her head down to say she was sorry. It broke my heart and I told her she didn’t have to worry about the money stuff, but to just focus on getting better.
She came to me hours later saying she had an idea to help with bills. She said she wanted to sell her paintings. I told her she didn’t have to do that. She begged me to post it on Facebook and I decided it might be good to let her feel like she could contribute. I posted it and had a great response! She decided later she would start a website to take donations for her artwork.She wants to use a portion for her medical bills, a portion for fun stuff (bucket list), and a portion for other kids going through cancer.
This little girl is my hero and has taught me so much!
She is currently going through chemotherapy treatments that involve a 5 day stay in the hospital each time. She is about to start a drug called Mitotane which is made from the pesticide DDT. For some reason it's known to kill adrenal gland cells but it's also very toxic to the body.
Please continue praying for her ❤️ some people have wanted to know an address to send things to her, if you want to it is: 20403 N Lake Pleasant Rd. #117266, Peoria, AZ 85382
Also I have nothing but praise for all the nurses and doctors at Cardons Banner Mesa children’s hospital, they were awesome! I highly recommend this place if you have kids.