For December, we are sharing Mckensie Jay. Her particular story highlights the sometimes very difficult struggle there is in getting a diagnosis for your child. It is often complicated as you are the voice for your child. You know your child the best, and it’s important to fight and advocate for them. Rachel, Mckensie’s mother, shares their emotional journey.

Mckensie's story starts February of 2021. She started becoming very clingy and downright crabby a lot. Very easily irritable. I took her to the doctors, and they said she’s just a toddler and it may be her personality. Then in that summer, she began to vomit within minutes of waking every few days. So back to the doctor to be told she has acid reflux. They put her on medication. Then the vomiting became more often. They said it was allergies, and the mucus was making her sick. By the fall, she started getting really odd headaches. She would cry and try to open her eyes but they would roll in her head like a migraine. In the meantime i was steadily taking her to the doctors. Towards the end of October, she started vomiting every morning. Car rides became a problem. She had a really bad day, and her balance started becoming a problem. I took her to the ER. They did a chest xray and blood work with urine test. She had mild pneumonia probably from vomiting and an uti. They sent me home with antibiotics and nausea medicine. Three days later, I took her to the pediatrician who refered her to a gastrointestinal doctor. She started running her own tests. I asked the pediatrician to send her to neurology, and I was told 1 specialist at a time. By the end of December I had had enough. I called the pediatrican and cried if they wouldnt help her she would die soon, as a mother your gut tells you something is off and had been for a long time. He sent me to neuro. I had to wait to get a sedated MRI until March 2022. They took her back and 2 1/2 hrs later they came to tell me they found something and I needed to wait for a doctor. Her neurologist came over from his office, and the head of oncology came. I sat down. I knew. They wouldn't tell me what they thought it was, but i knew. They ambulanced us to John Hopkins because the fluid in her brain wasnt draining as the tumor was so large it cut off the canal. Four days later, she had a 10 hour surgery by Dr. Cohen (probably one of the best doctors i have ever met). The tumor was formed on her brain stem, but he removed all that was visible. I lived at the hospital until transfered to Kennedy Krieger for her therapies to relearn everything again. We were told her treatment plan would cause her to have some disabilities as she grows. We finally left Kennedy to come home for one day to go back for a G tube, spinal tap, and port placement. Went home from there and had one day off before radiation was supposed to start then they found her port was infected so she had to go under to get a pic line to start radiation the next day. Every weekday afterwards it was an hour and a half drive to chemo. Then I had to drive to radiation where she was sedated. My whole day was spent in my car for 30 sessions. During that time my house came down with covid so as radiation protocol stated i had to stay in my car most of the day. We got six weeks off to do a MRI, hearing test, blood work, and clinics. We are now in cycle three of six 30 day cycles. Each cycle starts with inpatient week, then outpatient week, and the last 2 weeks are tests. Most of the nurses, doctors, and child life therapists have helped in ways i will never be able to thank enough. No one ever talks about the stress on the parents. The emotional draining, weight gain or loss, that i have watched several families go through. I’ve lost friends, and some family avoid me because they can’t relate or don't want to hear about it. My saving grace was my church family, bringing food, helping with gas cards, and just being an ear while I cried. The support groups having been inspiring hearing others stories and I thank God for them. I am not saying i have it worse than my child, by no means. She is the ultimate priority but my poor son and me and her dad have suffered too. I only pray for all families having to go through what we have gone through to have God's peace. I continue to worry about her future, but i trust that God will bring her through.

At this time, McKensie does not have a support page. If you would like to send them something or words of encouragement, you can send them to us directly and we will forward them along.