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Jake's Superhero Brain Cancer Fight

$41,860 of $60,000 goal

Raised by 516 people in 5 months
Jake (The Jakester as he's known!) is the sweetest 6 year old boy whose childhood was turned on it’s head mid-September by brain cancer. Jake’s Mum has been my close friend since primary school back in South Africa and we have remained close all these years. Both our families now serendipitously live nearby on the Sunshine Coast where our children have become besties too.
 

Concerned with a few random symptoms, Nicole and Paul took little Jake to their family Doctor for a checkup and within minutes of walking in the door were given a bleak report. An emergency MRI showed a 3.5cm mass deeply intertwined in his brain stem and the prognosis was grim!

 

After a 7 hour surgery, only 70% of the tumour was able to be removed with the rest in too precarious a position.  A “Grade 1 Pilocytic Astrocytoma” (JPA) which, though labelled benign, is actually a form of rare cancer that is non aggressive, slow growing and contained to it’s location. The ramifications of this cancer are extensive and will likely impact Jake for the rest of his life:

 

·      His movement and balance are affected – specifically the left side of his body.

·      Increased pressure within his brain means his brain fluid does not flow properly to the rest of his body.

·      Vomiting

·      Headaches

·      Double vision due to the pressure of swelling of his brain to his optic disc

·      Muscle weakness

·      Possible seizures

 

Though not an ‘aggressive’ cancer, JPA is just as insidious as it hijacks Jake’s childhood filling it with immediate daily and ongoing physio, speech therapy, occupational therapy, surgeries, eye specialist appointments, hospital stays and cancer treatments. All the while Nicole and Paul have shut down their businesses to become full time carers for Jake. Not only is this a huge financial burden without any income but they’ve temporarily relocated to Brisbane (an hour and a half from home) while their 5 year daughter, Jake’s sister remains with friends back on the coast - not seeing her beloved Jake, Mum and Dad for a week at a time. Neither Nicole nor Paul have any family close by, only friends who are desperate to help.

 

Staunchly independant, they've granted me their reluctant permission to creat this campaign for everyone who's expressed helplessness but a desire to help. The most practical way to help this beautiful family is to fund Jake's cancer treatment and rehabilitation costs.


These funds are desperately needed & will go a long way for them:

·      Not only covering mundane expenses like rent and the rest of their regular bills without any income

·      Cover the continual and ongoing daily out-of-pocket expenses that their health insurance will not cover for Jake’s physical requirements: Physio, speech therapy, occupational therapy, medication.

·      Fuel driving backwards and forwards from the Sunshine Coast to Brisbane weekly to see their daughter and bring her to visit her big brother.

 

Currently (24 Sept) Jake is 6 days post op:

·      Under 24/7 nursing observation.

·      His eyes are improving in strength but double vision is consistent.

·      The entire left side of his body is going to need intense rehabilitation

·      The drain in his head is being constantly adjusted to challenge the fluid pathways in his brain and body to adapt it’s ability to reabsorb. This, combined with the MRI next week will determine whether or not he will require surgery to insert a shunt from his brain to his stomach.

 

The endless emergence of new, unanticipated obstacles that lie ahead of him are constantly challenging Nicole and Paul’s optimism but they never the less remain hopeful they will get their little boy back to a fully restored health and childhood.

Childhood cancer is unfathomable but to happen to a tender hearted little boy whose response to the nurse asking him if he would like them to remove his bandage was “Yes please, if it’s not too much trouble?”

Please support our friends by donating any amount that you can to ease the upheaval and heartache this has caused their otherwise, peaceful lives.

**As per Go Fund Me's T&C's: I've been good friends with Nicole since Primary and we continue to be close friends as we live near one another on the Sunshine Coast. All funds collected are going straight to Nicole and Paul's joint bank account, being distributed directly from Go Fund Me to them. I have merely set this campaign up for them. I have nothing to do with collecting the funds. Jodi x
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Heartbreaking but hopeful update from Nicole and Paul, Jake's parents:

"It has been two weeks post second surgery. Two weeks of sleepless nights, emotional stress and evident, progressive symptoms of worsening double vision, facial paralysis and left hand tremours in our son, Jake. Paul and I have been agonising over Jake's path forward and at the last minute made a decision to postpone chemo in order to get a second opinion. Paul flew to Sydney to meet with world renowned Professor Charles Teo, whose forte is brain stem tumours. He is confident that he can resect the entire tumour and remove the three cysts using a keyhole approach. There's a good chance that this would be a permanent cure for Jake, as Juvenile Pilocytic Astrocytoma's generally do not come back. We are faced with very high risks, however, after weighing up the pros & cons of Jake's prognosis, we believe this is his best option for his life and future."

Dr. Teo is one of the only surgeons in the world who performs this challenging type of surgery. He is one-of-a-kind, private sector surgeon who operates from a private hospital in Sydney. The operation is very expensive (ball park figures at this stage) and will entirely come out of their own pocket, not to mention insurance excesses, MRIs, anaesthetist, flights to Sydney as well as lack of income while they nurse Jake back to health. Paul & Nicole are seeking any help & assistance in funding Jake's surgery and helping cover their basic bills while their personal business income which solely supports their family, stalls during Jake's rehabilitation.

His surgery is set for 28 February - we have 3 weeks to raise the funds for Jake to get his surgery. Are you able to help this beautiful family please?
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An update from Nicole, Jake's Mom:

"After a more in depth analysis of Jake's recent MRI, radiology has confirmed that the tumour has grown by a few millimeters and in all directions. A large cyst and two small cysts have formed around the tumour (common in this type of tumour), which are most likely the cause of Jake's recent symptoms of left facial lag, numbness in left arm, shaking in left hand and a severe headache.

We're on our way to Brisbane for Jake's surgery today. The neuro-surgeon will be doing an endoscopic 3rd ventriculostomy (creating a small hole to assist brain fluid drainage, as tumour & cysts keep blocking natural pathway) and cyst fenestration (popping of the large cyst applying pressure to important nerves affecting Jake's left side). At the same time, a general surgeon will be inserting a port-o-cath in Jake's chest under his skin - this is attached to his main artery & will assist future chemo administration.

Once Jake has recovered from the surgery and wounds are healed (about 2 weeks), he will more than likely begin chemotherapy, starting weekly over 1.5 months, and then once a month over the course of a year, giving him 3 weeks of every month to live a relatively normal childhood.

Paul & I are flooded with fear of what lies ahead, but remain strong for Jake's sake. We will fight this with him and remain hopeful that chemo will stop/shrink the tumour."
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Dearest family and friends, Paul and I are overwhelmed by your endless love, support, positive thoughts and generous donations. We simply do not have the words to express our gratitude to you. The abundance of love and combined energy has meant the world to us and carried us through the hardest time in our lives. Thank you from the bottom of our hearts.

Your collective love has shone through Jake and helped him through his recovery. He is doing so well that he will be discharged from hospital today and Paul & I will continue doing therapy with him back home, making a weekly trip back to have sessions with the wonderful team here. I cannot begin to tell you how excited we are to all be home together under one roof as a family again. Even though it feels abnormal going back home, where life continues as it did before, and it will take some time to readjust to reality again, we've learnt from Jake that we will recover together and regain our lives, slowly but surely.

The Jakester has been our hero, our teacher, our role model through this all... the sweetest, most gentle soul. Paul and I are both honoured and privileged to be his parents, to still have him in our lives. We love you Jake.

Thank you all again from the bottom of our hearts.
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Nicole asked me to post this update about The Jakester:

We had a big day yesterday... the EVD was removed and so far, so good! Jake thinks his scar is pretty hard-core (which he's totally right about) and doesn't mind me sharing a photo of it with you!

We spent over 5 hours in opthamology, with mostly positive feedback. His optic nerves are still heavily swollen and could take up to a year to heal, but there is possibility of complete rehabilitation. If not, there are surgical/prism options to consider to fix the double vision. But this is only something to consider way down the line and Jake is happy to wear his upgraded pirate patch until then - alternating eyes every 24 hours to strengthen optic muscles and for him to be able to see properly without double vision (photo attached below).

We have been moved to the rehabilitation ward and started physio today. Jake will have physio therapy, speech therapy and occupational therapy everyday. As Jake is bouncing back so quickly, the therapy consultant feels confident that he may only need to be an inpatient for another 1-2 weeks. Then we will be able to return home and proceed with fewer outpatient sessions - still commuting to Brisbane for them.

We are all excited about the prospects of returning home and being together as a family again. Paul and I are going to start taking turns at going back home to be with Bella and get her settled at home before school starts next week. She is also going to spend a night in hospital with us this weekend to be with Jake. They miss each other very much. We are encouraged by Jake's incredible progress and are adapting to our new reality.
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$41,860 of $60,000 goal

Raised by 516 people in 5 months
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