Our amazing boy Zeke needs your help

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Update 2: Merry Christmas everyone. I never expected to update this Christmas day but I wanted to share our miracle. Zeke shocked all the doctors with his recovery and so they released us from the hospital yesterday for Christmas

Still a long road ahead, and we’ll meet with Oncology in January to discuss starting chemo, but he is doing better then we ever dare to hope for.

Sending our love and best wishes to each and everyone of you.

Update: So Zeke did fantastic with his surgery, better then we ever expected. He breathed well on his own all night and in the morning they first removed his drainage tube in his head because he hadn’t used it all night. Then he was doing so well they started removing other tubes and wires one by one.

By 3pm he was running around his ICU room his normal Zekey self and they let him leave the ICU and go back to his room upstairs. He did well overnight besides ripping out one of his IV’s, and even got a special phone call from Santa today

It is with a heavy heart that we have decided to reach out for some help, that is not something we are use to doing, but we’ve had many people reaching out asking to help so we have decided to set this up for anyone that wants to.

Anyone who has ever met Zeke has had part of their hearts stolen. He is an adorable, active, loving, and very social 4 year old little boy. He has Neurofibromytosis, aka NF1, and they have been monitoring an area of activity in his brain for 2 years but til now it had been defined. Then about 2 months ago he started getting sick.

For most of November he was sick on and off every other day it seemed like, everyone chalked it up to him being in Preprimary and all the virus’s going around.

On November 24th he had his first ‘episode’ he became incredibility lethargic, threw up, and that went non responsive and we couldn’t wake him- that was the scariest 10 minutes of our lives up til that point. He was rushed to Valley Regional and found to have an ear infection, they figured it was a febrile seizure he was given anti biotic and sent home.

Nov 30th it happened again. This time we were told that when he when he had a CT in March they found a Glioma, a type of brain tumour, this was the first we’d heard of it and we freaked out to say the least. We got ahold of all his doctors and since he was due for a follow up MRI anyway our paediatrician was able to rush it and put him on a cancellation list. At this time Christa went off work and onto EI because one of us had to be available at all times when the lethargic episode starts and for days he couldn’t be in school, most days he started coming home early.

In total it happened 4 times. Our responses from the doctors ranged from the extreme ‘he needs to be checked now’ to ‘his a kid, kids get sick don’t worry so much’ but we pushed and refused to just accept this was normal.

On December 20th he has his follow up MRI at noon. Then at 5pm we were almost home when we got the call that he needed to come back to the IWK the next day, and to be prepared for admission and possibly a surgery

The 2nd MRI showed that was the ‘area of activity’ had expanded greatly and is now a diffused tumour. It is causing pressure, and fluid to build up in his brain and complete close of one of his ventricles. Now today he requires two brain surgeries. The first to fix the ventricle and allow for drainage of the fluid hopefully done through a small incision. He will have a drainage tube in his head for a few days during his stay in the ICU. The second then to relieve the pressure and take out as much of the tumour as they can means removing a piece of the skull so they can have a ‘window’ into his brain. The tumour will then be sent and we wait for biopsy results which can take up to a month.

This will not be a quick recovery, we are looking at 5-7 days in hospital assuming there are no complications we can then go home for a 4-6 week recovery. They are expecting numerous trips back and forth to the IWK, and because the tumour is diffused most likely some form of Chemo or radiation will follow but we won’t know for certain till we have the biopsy results.

Patrick is currently off work, we aren’t sure yet when during this process he will return. Christa will be off the entire time until things can go back to ‘normal’.

It has been suggest we also add that people can etransfer to us at [email redacted] just make the Zeke the answer to the security question.

Thank you all