Mayson’s Fight

07/30/2024

Update: very short version…. I am unable to go into anything more.

I’ll provide you a short description of Maysons Journey.

Mayson was born September 13, 2007 at 28 weeks gestation. He was premature and started his life out with the biggest fight to live. He spent only 45 days in the NICU and was able to come home. The challenges he faced and still faces began then. Throughout his life he’s faced many many illnesses and hospitalizations for multiple illnesses and conditions. He’s been fragile his whole life.

He was diagnosed with Autism and autoimmune disorders at 18 months old. We fought hard for him to receive every treatment and therapy possible and he successfully managed to overcome most of his challenges and was able to participate and be an average child for many years.

In 2018 he had some oral surgery on his teeth and that’s where the more complex issues began. After multiple specialists were seen and multiple treatments and medication and therapies he was diagnosed with Kleinfelter Syndrome ( xxy) and vasculitis( GPA) which he began multiple treatments and seen many specialists and we sought multiple second and third opinions.
He was not getting better. In 2020 we were referred to Phoenix Children’s Center for Cancer and blood disorders which we saw an amazing Dr who specializes in rare genetic disorders and was interested in maysons complex care. After a multitude of tests and pokes he was diagnosed with MYELOFIBROSIS- myelofibrosis is a rare bone marrow blood cancer. It is classified by the World Health Organization as a type of myeloproliferative neoplasm, a group of cancers in which there is activation and growth of mutated cells in the bone marrow.

He is only the 3rd or 4th known pediatric patient to ever have Myelofibrosis as it’s exceptionally rare in children.

He was then immediately set up with the Hematologist and Oncologist and began treatment which consisted of immunosuppression meds, chemotherapy treatments and much more.

He was not recovering and it was decided that in order to prevent him from dying from an infection that his body could NOT fight or his body creating a secondary cancer ( leukemia) which is possible with his case. He needed a bone marrow transplant. We immediately began the process and on 4/10/2024 he received a non related bone marrow transplant.

We have been in Phoenix since February 26th 2024 fighting for his life and praying that the BMT is his cure. It has been very hard and difficult. He’s experiencing multiple side effects and complications from his transplant such as Graft vs Host disease in his liver and skin. He’s been diagnosed with steroid dependence t diabetes and now possibly Renal Gland insufficiency. We are waiting for his post 100 day biopsy results and aspiration tests to see what is next. He’s going through ECP light therapy 2x a week and clinic 2x a week and much more at home nurse visits and other specialist appointments as well.

We are not giving up on his miracle to live!!!

Here’s some photos of the journey so far!

01/02/2024

Update on Mayson!

2024 will hopefully be the year of transplant, recovery, healing and rebirth!

He is scheduled for multiple appointments next week Tuesday-Friday. We will literally be gone for a whole week. We tried stacking the appointments but it just didn’t work out this time and We were informed that the Ronald McDonald House has no availability this trip and we are now going to have to stay at a hotel or STR. As many of you know these can get quite costly and I am doing everything I can to afford the multiple travel costs that come with living 5 hours from his treatments.

It’s right after the holiday’s, business Season is slow and his fundraising is delayed due to many factors out of our control. So 2024 is looking like another financially difficult year for our family.

I was informed that if people want to donate or send cheer but are unable or uncomfortable doing so online through his COTA link they can give gift cards and gas cards and stuff like that to him and to us.

So I’m going to provide a mailing address for him for anyone who wishes to send cards or anything that may help us through. We appreciate everyone’s support and prayers.

I’m not going to lie, the expenses are starting to pile up and we are already receiving medical bills too.

Our business relies on tourism and STR bookings here in Page and as everyone knows winter is slow season. Im being honest with everyone when I say we’re financially struggling and going into debt. Statistically medical debt is the number one cause of bankruptcy and homelessness in the U.S.

I will continue to work as long and often as I possibly can before we head to Phoenix for his long term care and transplant. Once we are admitted in PCH for transplant, I will no longer be able to work as I will be with my son inpatient and bedside. My 17 year old son will be continuing the business here as much and as best as he can while I am away, the business pays our monthly expenses here in Page that hopefully we can maintain and keep for us to come home too.

My 20 year old plans on being in both places as much as possible and plans to travel back and forth if possible and necessary. As of right now if it’s not possible for him to travel back and forth he plans on going with us to Phoenix so he and I can rotate hospital shifts and such.

We’ve been told to prepare for that and that the hospital will not allow me to stay with him bedside 24/7. Eventually they will kick me out for a while for a break (I’m not happy with this) but I know it’s necessary.

Things during pre-conditioning and transplant and recovery can all change so fast and they are adamant about me being able to get a break! I will have to do it but I’m not happy about it. Nobody said this was going to be easy. They keep saying it’s a marathon not a sprint and eventually the race is over but it isn’t going to be a fast one! More like a slow crawl race! God help me as I’m very impatient when it comes to medical care and healing especially when it is my kids!

Adjusitng is going to be hard so please pray for me to be patient and strong enough to get through this difficult time.

Sincerely;
Mel & boys

I am scared of everything else but I am trying to take it minute by minute and appointment by appointment. The unknowns is making me nervous and I thrive on structure and scheduling which none of this is anything of that nature.

I will do whatever it takes to keep my home here as it’s so close to being paid off and mine! The fact is I’m proud of that. It may not be a huge house or a house at all to many people but it’s what I call home and it’s what I’ve worked hard for all these years too.

So anyway if anyone wants to send cards, letters, or anything else to cheer him up or us up or to help with the expenses that keep coming. Here’s our mailing address.

Melody Salter
Care of Mayson Conley
PO Box 4984
Page, AZ 86040

If you would like to donate through his fundraising website it is http://www.cotaformaysonsmiracle.com/

I also have Venmo but you will need to Pm me for that.

We appreciate everything and here’s to 2024 being the year of my son’s healing journey and our family being able to see the light at the end of the tunnel!

If anyone over 21 and not living in our household wants to coordinate a fundraiser such as a Navajo Taco sell, a dinner, a bake sale, t-shirt sale, a 5k run, anything like that please reach out to me and I can get you in contact with his COTA coordinator for support and assistance with it. I am unable to fundraise for him and so are my son’s.

Please feel free to contact me with any questions.

Here’s a a successful 2024 and God bless you all!

On September 13th, 2007, Mayson was born 10 weeks early via emergency C-section and weighed 3lbs 1oz. His mother had suffered Placenta Previa and had started to hemorrhage, although he was healthy and lungs developed enough to avoid breathing support he spent the next 45 days in the NICU learning ho...

10/27/2023

http://www.cotaformaysonsmiracle.com/

The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-nee...

09/07/2023

Just got off a teleconference with Maysons Hematologist and immunologist and it was ALOT to process.

Bottom line is Maysons been referred to Bone Marrow/ Stem Cell Transplant Clinic.

His case is extremely complicated and complex but the drs were extremely blunt.

“ without the transplant, he will die” it’s not optional. Therefore we were told to prepare to be relocated to Phoenix for a minimum of 4 months but most likely much longer.

The details of this are still in preparation but for now it will be mayson and I relocating to Phoenix temporarily in a few weeks. I will still be able to work remotely and communicate with Guests and Trystan. If you choose to allow us to continue working with you.

We are in the process of getting fundraising figured out as this is going to be a financial struggle for us.

Stay tuned and please pray that we get through this together!