Alaynas medical expenses for a tumor in her brain

In October of 2021 our then 6 year old daughter, Alayna, started to get sick with constant headaches, throwing up and fevers. We took her into the doctors and they ran tests and said that it was some kind of bug. She kept getting worse and we kept taking her in and they kept saying it was a bug and to wait it out with children’s Tylenol and Motrin.

On the night of March 12, 2022 Alayna’s right eye crossed in towards her nose and she was saying she had a really bad headache. We had a medic look over her and he suggested that, with everything the doctor was saying, to take her back into the doctors on the next Monday. Monday morning we got an appointment right away and went in. The doctors office refused to see her because we were in the middle of switching over her insurances. We made the decision to go see her eye doctor, because her eye was crossing. When they look behind the eye they seen a bunch of fluid on her brain and optical nerve. They told us we needed to get to urgent care right away. They called urgent care and let them know that we were on our way and they were sending the images to them. We got there and that doctor took one look at her and said she needed to get to the ER right away so we left and headed there. When we got there they did a CT scan to see the fluid on the brain and they didn’t waste any time transporting her via ambulance to the nearest children’s hospital about 4 hours away, by then it was almost the middle of the night. They did an MRI the next morning and they found a tectal glioma on her brain stem which was causing blockage of her first, second and third ventricle. They told us that the tumor could not be operated on or even biopsied because it was on her brain stem in a place that it was just too dangerous to touch. On March 16, 2022 they did brain surgery to release the pressure off her brain from the fluid. She was released from the hospital March 18, 2022 with plans for more MRIs and further follow up on her glioma. During our hospital stay our two boys, her brothers 12 and 10 years old, had to stay with their aunt while we both were with Alayna. They had a very hard time and were having break downs at school. After Alayna’s hospital stay she has been having night terrors and waking up in the middle of the night shaking, sweating, convulsing and crying.

Fast forward 6 months for her first follow up appointment for the glioma. The MRI was first thing in the morning where they had to have her be asleep for it so she wouldn’t move around. After that appointment we seen the neurologist. She had told us that the tumor had grown a “ significant amount “ but wouldn’t really say how much. She sent off a couple of referrals for followups. We then seen her oncologist who said that it had grown as well and that they would do another MRI in 6 months and check it again.

Both my husband and myself feel that we needed a second opinion because they were not really giving us the full story we felt and so we asked her doctor to send a referral to Phoenix Children’s Hospital and her local doctor did and so we are waiting on them to get in contact with us. We are asking for help with travel expenses and medical expenses, not just for Alayna but also for the whole family to be there with her when she has to go out of town/state for medical appointments. From what the doctors are saying she will have this tumor the rest of her life and as it continues to grow she will have to undergo chemotherapy and even then that is not guaranteed to get rid of it. Anything truly helps.