NOTE: I felt it unfair to rewrite the original GoFundMe script as our day by day seems to change so stay tuned to the updates as they will be the ‘unofficial’ rewrite.
I've matched the criteria for a unique and ONCE-in-a-LIFETIME clinical trial set in the U.S. at the National Institute of Health. The goal of this trial is to find a curative solution using CAR-T Therapy for Relapsed B-Cell Leukemia's, to which there is currently none in Canada!
Hello! That's me, Paul Idasz, post stem cell transplant relapse of A.L.L. April 2019 :) With me is my young family of 3.
My wife, Sarah (36) and I (39) have been together 12 years, married for 6. We have a 3.5 year old daughter, Mila who was sadly only 2 when this kicked off. We are an extremely vibrant and motivated, well hiked and well traveled family who really takes life to heart. We take the highs with the highs and make the best of the lows, but life would quickly come to a slowdown.
My journey started in 2017 when I started developing stomach pains. Debilitating pains that would keep me from eating or sleeping despite the many pain management options available. In September 2017 I was finally diagnosed with acute b-cell lymphoblastic lymphoma (the rare kind, less than 5% of lymphomas are of this form).
The doctors had a plan. We started with a standard but high-dose protocol of R-CHOP chemotherapy, than 5 months of outpatient therapy as doctors worked on obtaining donor stem cells from an anonymous person pulled from the international registry. That's right, I'd be getting a Stem Cell Transplant! Fortunately an appropriate donor match was found. Prior to stem cell transplant, I'd still require a top-up of chemo and Total Body Irradiation. I felt great pre-transplant, fit and sharp as a fiddle.
I underwent Stem Cell Transplant (HSCT) in April 2018. Following an arduously slow 5 week recovery in hospital, I was discharged from hospital to continue my long recovery from home.
It was a long and slow summer as I struggled with nausea and the effects of full body exhaustion. A frustrating experience unlike any I could have imagined to have to struggle through. It would take months and most of my mental/psychological ability but I had realized that naturally, patience and time was what I needed and by the end of the year I had begun to gain some energy back and started eating again! I had finally begun feeling a sense of normalcy in the start of 2019. Full of energy, starting exercise again, putting weight back on, clear headed, focused and sensing freedom.
I had almost made it one year post-transplant disease free, but in February of 2019 I started presenting similar symptoms to 2017. I had relapsed to Acute Lymphoblastic Leukemia - ALL. I was put on a life-preserving gene therapy (blinatumomab) to settle the aggressive cancer as we await final eligibility requirements for NIH Trial staging. The drug was fairly effective at keeping the disease at bay but unfortunately couldn't hold out against the disease, it almost immediately returned with a vengeance.
I spent many of the upcoming nights and weeks not sleeping, not eating and this time, feeling the life force drained out of my legs, completely sucking any life and energy, to the point I began to struggle walking 200 m to the corner store! Still nauseous with little appetite, I will need to find a way to keep the calories up.
The revolutionary therapy currently taking place around the world is truly fascinating and deserves a video search.
My specific trial will extract my original donor's T-cells. The T-cells have interceptors that can detect cancer cells, but with the aid of a powerful protein, these cells are re-engineered in massive quantities and are reinfused into my body to specifically target these cancer cells B Cell (CD19 cells) thereby eradicating the disease.
Fortunately, the NIH fully funds the treatment as far as the trial study:
CT & MRI, biopsies, nuclear medicine, the genetic manipulation of the T-Cell and of course will include the infusion itself.
That's a 1/2 million dollars in savings! We've been quoted up to $1.1 million USD in other American trials!!
So why do we need this GoFundMe?
I’ll start with currency conversion. We will automatically lose nearly 25% of funds due to the Canadian vs US dollar!
We live in Vancouver BC, Canada. The NIH trials are located in Bethesda Maryland, USA requiring my caretaker (Sarah and Mila) and myself to make the cross continent trip several times for followup visits (5 up to 8) in the 3 months post trial.
Despite managing a disability salary (for over the past 20 months) and Sarah's part time work, Sarah will be on a compassion leave of absence from work for the duration of the treatment and numerous visits, further diminishing our income.
Tests not covered by NIH -
Limited funds are available for certain tests and may be required to pay out of pocket. I’m not certain what these tests cost, nor if I will require them, but the trial literature makes it very clear that should they be required, there are no other options. Another unknown variable.
Emergency Fund -
Should I need medical attention outside the scope of the trial (ICU, ambulance, etc), this is NOT covered by my out-of-province Health Care nor by travel medical insurance. I can not obtain out of country travel insurance for this purpose as I have had a transplant and insurance is next to impossible to obtain!
This is our greatest variable as it may or may not be required and we don't know the extent of it until needed - without insurance we're playing with fire!
We are required to pay for all prescriptions required and purchased in the U.S. during the discharge period, (this is not covered by out-of-province or by my extended benefits) and can be quite costly.
We'll require accommodation for the length of my work up/eligibility, treatment, therapy and recovery at the NIH, and of course at each subsequent visit.
We'll be required to pay for all food while there (that means no hospital food, so...good for me?? lol)
I ask that you do this for my beautiful family!
For my daughter, Mila, just coming into her own world of imagination and playland, who can't physically play with her father as he rests ALL Day too exhausted to sit up or play make believe!
Please do this for my wife, Sarah, who has amazingly taken the burden of all home life responsibility and caretaking on her shoulders. Allow me to get back to providing, leading, helping and unloading that burden!
Mila told us at the end of last year's hiking season that she was "BORN TO HIKE". Let's make that happen again :)
Any gesture or contribution is truly welcomed and we are forever grateful to those of you finding a way to help when you can't in person!
Thank you to all those who have provided love and support through this struggle. It was a difficult decision for me to come clear to the world and let everyone know what my situation was and am starting to feel the love as the minutes pass by!
Together why don't we already call this a VICTORY!!
Love to all!
Note that we don't have an accurate estimate for medical emergencies, so when and if we reach our donation goal, all donations in excess of our actual cost will be donated to worthy causes perhaps a fellow Leukemia patient needing funding!