Journal entry by Victoria Zicafoose —
I know it’s been a little while since the last update but in between my last post and this one, there were some other things that happened. So I had to wait a while and now I have confirmation to update you all.
Friday of last week Hannah started saying she was starting to feel tingly and cramping. She also had a headache that was just not going away. I immediately called the doctors office and the nurse Noel that works for Dr. Narayan, called me back right away.
She said that Dr. Narayan wanted Hannah to get an MRI stat. So off we went back to Phoenix Children’s Hospital and we were there for about 3 hours.
They immediately called in immediately a five day dose of massive steroids, gabapentin for pain and sleep medication just in case something showed up.
They had her start that on Saturday.
I called the doctors office late mid Monday because I know it takes time for test results to be read and soon after I got a return phone call and in fact there is a new lesion in her brain. My heart just sank!
The doctor also strongly strongly strongly suggested that she start doing school from home. Now that really has upset her incredibly. That’s going to be challenging in itself because this is her last year of school, she’s bored out of her mind, and I know it’s just breaking her heart she can’t have a wonderful senior year.
She did stay home this whole week while she’s on the steroids. but she’s going to go back to school tomorrow. She only goes for four hours so she should be OK. I am not at all comfortable with this and I have left a message with the nurse Noel so I should hear from her tomorrow and see where to go from there.
We have a video appointment with Dr. Narayan on Friday. And I sure hope he really really stresses how important it is for her to really take care of her self. Right now her immune system is a bit compromised and I do not want her going back to school but she doesn’t take a lunch, she doesn’t do any school activities and she does not ride the bus anymore.
She is very religious in wearing her mask and making sure she washes her hands all the time. So we will see what the doctor says Friday when we see him.
I will keep updating as I find more information out.
Thank you all so much for your continued love, support and prayers! Love to each and everyone of you!
Victoria 🥰🙏🥰
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