Cael, one of the Bravest, Kindest, Most Courageous, Cheerful, and Faithful young boys you will ever meet...
It is with great reluctance that we 'put ourselves out there' to all of you, no matter where you may be, to ask for help.
When you are battling something so scary and heart wrenching as watching your child facing life or death, as a parent, all of a sudden you feel to immediately put your personal pride and inadequacies aside. The hesitancy comes when you realize that others might judge you for asking for a "hand out", or that your effort is so bold. Again, when its your child... and you are facing uncharted territories...
With that, we are exposing what may be the most personal trial we will ever face ~ to anyone and everyone. We have a great hope and a great need, to ask for you, to help us help our son who is battling an inoperable Brain Tumor. Thank you for reading and sharing "our story". We hope that this avenue will help us reach our goal and allow us to relieve some of the stress and the financial burdens of obtaining unrestricted care for our son.
(Cael was the youngest "Difference Maker" in the Rick Hanson Relay in our leg of the Man in Motion Tour in 2012 - age 9)
Cael is an eleven year old boy, full of life, health, energy and extremely fortunate to have been blessed with that "knack" to pick up whatever he tries and be great at it! He is also the youngest of ten children and an uncle to two.
In a routine eye exam, it was learned that Cael had an inexplicable grey optical nerve in his right eye. One that you would not see in a young child, but in that of a 70-80 year old. This had impaired his vision but posed no other symptoms. Cael's family and family Doctor(s) were completely unaware of any impairment, as Cael had completely compensated for his vision and demonstrated no issues; no dizziness, didn't bump into things/exhibit uncoordination, didn't complain, tracked with both eyes, did well in school and sports, looked perfectly fine etc. In short, he was asymptomatic. It was agreed that Cael's family should get in to see as many eye specialists as possible to determine the cause of this issue. This was done beginning in 2013, when Cael was ten years old.
After nine months of meeting with Eye Specialists for testing; mapping; field testing (shown here); ultrasounds; and all that goes along with that in up to five hour eye appointments, finally ...Cael had an MRI. What started as an eye issue, was diagnosed as a: Pilocytic Astrocytoma involving the Optical Chiasm on March 4, 2014. Translated: Your son has a Brain Tumor.
To the Neurosurgeons great credit, Cael quickly underwent a biopsy on March 18th, 2014.
As Cael's tumor is right on top of his optical chiasm (the point at which the left and right optical nerves cross), and involves vessels, arteries as well as his pituitary gland and hypothalamus gland, the tumor is inoperable.
The biopsy was performed, to confirm the type of brain tumor Cael had, just 14 days after being diagnosed.
Only 10% of the tumor was able to be removed during the biopsy. The tumor was diagnosed as being 4cm x 2cm. Tragically, during the biopsy, what vision Cael had left in his right eye (primarily peripheral - but enough that no one would know he had any issues), was completely compromised, rendering him completely blind in his right eye.
Post operatively, Chemotherapy was recommended on March 28th, 2014. This would entail Cael having a central line put into his chest on the right side just below his clavical (a CV) and being injected via the CV with Chemotherapy every Monday for a year and a half.
Cael's family requested medical evidence as to how the tumor was behaving, as well as to ensure Chemotherapy was their only option. As the Neurosurgeon was resistant to doing any imaging to ensure that Chemotherapy treatments were necessary at that point, until after Chemo treatments had started, this seemed unnecessary. Yes, Cael has a Brain Tumor, but unfortunately, as the Hospital had only met Cael on the 4th of March, there was no baseline in his MRI's. Moreover, the Neurosurgeon had not met Cael until the day of his biopsy. With all things considered, this simply did not make sense. Asking for a post-operative MRI nearly one month after the biopsy surgery also didn't seem to be an unreasonable request.
MRI vs. Chemotherapy
Surely Chemotherapy is more expensive than an MRI.
When it was recommended by the Neruosurgery Team to go along with the Oncology Team in proceeding with 80+ courses of chemo, until the end of 2015 the family felt very cornered. What would the outcome of this bring?
As Magnetic Resonance Imaging is considerably less intrusive, and the Lead Oncologist clearly advised that the failure rate (with Cael's type of tumor) was 57% that it would not shrink the tumor, which would then take Cael to the next step of untargeted radiation of his brain, Cael's family felt desperate to seek a second opinion.
Advocating for Cael's Survival
This took the family on a lengthy journey where they were able to secure a timely MRI-image. After travelling to obtain an MRI from a very reputable Radiologist and his Team In May of 2014, Cael and his family were very grateful to report that Cael's tumor was in fact stable. At that time, had he have gone forward with Chemo, likely - and sadly - the 8 Chemo treatments he would have had by that time, one has to wonder...would the Chemo have been credited for the stability?
It is recommended by a medical professional that Cael should receive a private MRI every four to six weeks for the next three years at a minimum depending on the behavior of the tumor.
It is important to note that Cael's family is not refusing medical care in anyway, but rather are advocating for his health. As this does not 'sync' with the Neurosurgeons' opinion, Cael's family sought another proficient Nuclear Radiologist who is committed to extensively monitoring the tumor for as long as it takes.
As well, an Neuro-Opthamologist has committed to overseeing his eyes.
Additionally, Cael's family is taking preventative measures in making changes to diet, etc. to do all they can do at home.
Serial Imaging/Monitoring is Critical at this time
As Cael's tumor is nearly filling his third ventricles, it is imperative that serial imaging is taken often enough such that if there is any growth in his tumor - even minute, that Cael's family can act.
Rather than compromise what appears to be a perfectly healthy boy, and live with the statistical outcomes of his prognosis, which are grim, they need to be vigilant. With the pressure in his ventricles the Neurosurgeon suggests that Cael could tip into hydrocephalus in a moments notice. Note: This can not be prevented by undergoing Chemotherapy.
This means that Cael and his family will need to bear the expense of travelling to seek timely Serial Imaging throughout his care to ensure there is no growth.
This also means that Cael's family, while monitoring his Brain Tumor with consistent MRI imaging, will be looking for a Doctor who will assist in alternative care ~ if there is anything available that is potentially life saving. This may require planning for next steps in the event that the Tumor grows.
Conquer Cancer Fund
All money raised through this effort will go directly to funding the travel and expenses associated with obtaining the care Cael needs at this time. If, with your help, and by some miracle Cael beats this, or the financial goal is met that exceeds the medical needs for Cael, any additional proceeds will go to a Conquer Cancer Fund set up for other children and their parents to gain access to much needed MRI imaging and other treatments that may prove successful.
Auditing of this fund will be transparent and require receipts etc. for all expenses. This will be done to ensure that every penny donated to this cause, goes to this cause.
Where does your donated money go?
Just so you know where your money/donation goes:
One trip to obtain an MRI takes approximately three days, and breaks down to cost:
$600.00 in fuel
$300.00 in Hotel/Lodging @ $80-120/night depending on 'season'
$300.00 in Food @ $100/day for Dad, Mom and Cael
$2700 approximate *cost of MRI -which includes a thorough 2+ hour consult with tge Radiologist - which is not available to us here. As well, If we pay in cash we receive a 30% discount. This equates to $1890 / MRI
$3090.00 total cost per trip in US dollars.
This does not include the MRI or copies of all imaging for Cael's Doctors where we live. These come at no cost to us, but at a limited frequency which is not optimum for monitoring Cael's tumor. *This very generous Doctor (who has asked to remain anonymous), did not be charging us for the initial MRI's until he was no longer able to provide this tremendous service. As such we now need to factor in the cost of an MRI costs.
If we follow the plan of an MRI every four weeks with a cost for an MRI factored in, this equates to:
156 weeks divided into 4 week intervals = approx 40 MRI trips.
40 MRI's x $3090.00 = $123,600.00
(not including any incidentals/other medical care that may become necessary)
If you feel so inclined, please‚ donate what you can. Every little bit helps!
You may specify what amounts you donated and allow us to know who you are so we can thank you, or you can keep your donation anonymous. As we are not a non-profit organization, we will be unable to issue you an official tax receipt.
It goes without saying that as a family, this is a difficult position to find ourselves in. No one ever wants to become a "cause" or to have to ask for help from others - especially monetarily. For this reason we sincerely thank you for your compassion and kindess.
Thank you in advance for thinking of our son, for caring enough to make a difference, and for helping us get him the medical care he needs at this time. Without the generosity of people such as yourselves, the success of Cael's outcome would not be possible.
It takes a village to HEAL a child!
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