The fight for baby Zion, news no parent should ever have to hear

tment

When Kelly and Marlie took their six month old baby Zion to the hospital in Palmerston North they never imagined the horror that would unfold...

One week before rushing baby Zion to the hospital he was diagnosed with bronchitis giving him medication for the diagnosis he was not improving. Christmas Day came baby Zions first ever Christmas and all he wanted to do was sleep, mum and dad left him thinking it'd be best to let him rest. Boxing Day the day after Zions first Christmas he worsened paralysed down the left side of his body, rushing him to hospital the doctors realised it was something more serious...

All in a day...

Instead of Zion playing with all his new Christmas presents he was in hospital multiple test being done unfortunately the equipment at the Palmerston North hospital wasn't enough to get a diagnosis so Zion and his mum were flown to starship.

On arrival Zion had to have an MRI where a mass was discovered attached to his brain stem surgeons knew they had to act fast.

a few hours later Zion was taken through for what would be his first surgery.

Surgeons managed to remove 2% of the mass unfortunately it wasn't enough to determine what type of mass it was all they could say was that it is a malignant tumor.

6 days later New Year's Day Zion was taken back into theatre this time surgeons managing to remove 95% of the tumor being enough to make a diagnosis...

10/01/2016

Kelly and Marlie were given their sons diagnosis, 3weeks earlier their son who was nearly crawling who had the most infectious smile now had one of the biggest fights any one could ever go through.

Zions cancer is rare and usually affects babies under 3, it's called AT/RT for short a malignant metastasising cancer with the full name of Atypical Teratoid Rhabdoid Tumor with a survival rate of only 7% in New Zealand.

Given two choices Zions parents had to decide if they take him home to enjoy his last remaining months alive or to give him chemo which has a 1% success rate, the news no parent should ever have to hear pressured into making a decision by medical staff the couple were numb with grief and desperate for some form of hope however/whatever it could be.

After many conferences with specialist teams and hours of research the decision has been made that Marlie Kelly and Zion will relocate to Auckland Zion will undergo chemotherapy with hopes that he makes it till he is 3 which is the age when he can undergo intense radiation, while we are waiting for him to turn 3 we are also hoping to get accepted into a medical trial held at the Dana Farber cancer and blood disorder centre in Boston I will attach the link below. We pray baby gets accepted as the survival rate in Boston is 8% more then in Nz.

http://www.dana-farber.org/Health-Library/Childhood-AT/RT---Atypical-Teratoid-Rhabdoid-Tumor.aspx

http://www.danafarberbostonchildrens.org/conditions/brain-tumor/atypical-teratoid-rhabdoid-tumor.aspx

http://blog.dana-farber.org/insight/2012/03/atrt-how-my-son-faced-a-rare-cancer-and-beat-the-odds/

http://www.danafarberbostonchildrens.org/second_opinion_request.aspx

As of the 22/03/2016 Baby Zion no longer has chemo MRI scans show that it hasn't helped specialist have said all they can do is medicate his pain away.

Being told to love him and enjoy him while he is still Mum and Dad are besides themselves Kelly heavily pregnant at 8 months is to scared to embrace the thought of having a baby knowing that at any moment Zion could be taken.

It is the most unimaginable pain knowing you will one day be planning your child's funeral.

So we need to get baby to Boston even if there is nothing they can do at least we done the most we could we don't want to be planning a funeral, call it dreaming or denial but we just cant accept it not till we have done everything in our power to try and heal this baby 8 months is to young to go.

Kelly Marlie and zion have been living in the ronald mcdonald hoise since december not wanting to leave their sons bedside they lost employment they have a few days to find appropriate housing and rebuild their life as much as possible until we have the approval and funds to go to Boston money raised will help with all of this