Mya Bees Journey
My daughter Mya was diagnosed with AML M6 back in 2017 at the age of 2 1/2 yrs old. We had no idea at the time that she even had the disease until she hit the back of her head on a sliding board in our yard. That triggered her 1st of many seizures which eventually led to finding out that she had AML which created solid tumors in her brain and spine. The brain tumor that we found out she had was removed but it started to immediately grow back right afterward, so further treatment was needed.
At that time, I worked full time, and my husband and I had an 11-year-old son in public school. We were then, told that Mya needed intensive treatment which included chemo, intrathecal chemo to her brain, and 11 radiation treatments to her brain as well as a bone marrow transplant. During her treatments, she would stay in the hospital for 30-40 days at a time and go home for 1 week, which continued at least 4 times. At that time, I decided to quit my job, there was no way that I could stay with her, go home to my son & husband and maintain my job.
I then decided to give her my bone marrow and 1 month later after all that treatment, she relapsed. After she relapsed, we thought we were going to lose her, she developed pneumonia and stayed in the PICU for a few weeks. Eventually, she got better, and was able to start chemo, intrathecal chemo, and 12 radiation treatments to her brain and spine but stayed in the hospital for 6 months.
No idea what was coming
We noticed during the end of that year, she was tired and wanted to be carried all the time, but with going through so much, we thought that was just normal. We had no idea what was coming...
I took her home in 2018 and within a few weeks she started not wanting to walk, she started crying a lot more and I spoke with her doctors and they thought maybe she needed physical therapy. She also had started vomiting on a daily basis and could no longer eat prior to leaving the hospital and we had to have a G-Tube put in to maintain her nutrition. We were also told that that was probably normal and she should come out of it eventually. Physical therapy started, but Mya only participated in 2 sessions and was too weak to continue.
Brain stem damage
One night at home, I noticed that she could no longer hold her tablet and her toys and she started with a fever. It seemed that her left side was paralyzed, so I took her to the ER. The ER didn't seem to find anything wrong with her so they released us, that morning, Mya also had an oncology appointment so I didn't feel comfortable leaving the hospital, I went to the oncology floor and spoke with them. They decided to admit Mya, she was sent to the PICU and after tests, X-rays, and MRIs, we found out that she had brain stem damage as well as damage to C1-C4. All the damage to Mya was from having so much treatment in such a short amount of time.
She stayed in the PICU for almost 9 months that year. We almost lost her several times. She caught pneumonia, adenovirus, and every germ possible, but she found through. She was eventually placed on a ventilator with oxygen due to the damage. She lost her vision; she is quadriplegic, has to be catheterized every 3 hours, and is 24/7 dependent. I eventually got to bring her home in 2019.
We had trouble finding nurses because of the level of care, she needed. We eventually found a few but had trouble with them, so we let them go. Since COVID-19 hit, we decided in March 2020, that we could handle everything.
The best care
I am her Momma, Chrissy, I have been doing 95% of her care since 2020, and my husband is a seasonal worker, so he helps when I need a break. Our son is now 16 and he helps out when needed my mom is Mya's aide.
I never imagined in my life, that I would be a caregiver. I worked at the same job for 23 years prior to her diagnosis doing paperwork. I had no idea about nursing, but from staying in the hospital for so long with Mya, I learned everything needed to care for her.
I know that I am giving the best care that my daughter deserves. I have a hard time trusting anyone because she cannot be taken off of the ventilator for more than 15 seconds or she could die.
She deserves so much more and I hope that I can make her happy as long as I have her.
She is Mya Bee Strong!
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