Help Harley Beat A Very Rare, Aggressive Cancer

Important Update on Harley's Condition

Dear friends, family, and supporters,

We are all very sorry for the delays in reporting on Harley’s treatments, but you’ll know why we couldn’t update accurately & quickly once you read on.

We are now reaching out to share an urgent and deeply personal update about Harley's ongoing battle with cancer.

Alarming Findings

During Harley's recent PET scan, doctors discovered an anomaly in his lymph node adjacent to his bladder along with a small new growth within his bladder. Due to the treatment already underway & the risks of biopsy, these areas remain under close observation. The medical consensus leans toward these spots being non-cancerous, possibly inflammation and/or post-surgery healing processes. However, the uncertainty remains a heavy burden.

Lung Function Decline:

As mentioned in our last update, thanks to extremely generous contributions we were able to fully cover Harley’s phase 1 chemo/immunotherapy treatments, which started in December. We were also well prepared for phase 2. Unfortunately, his lung function gradually declined during his first treatment and worsened significantly after his second session on Christmas Eve. This led his oncologist, following advice from a pulmonary doctor, to cancel a treatment in early January.

Despite no improvement during that rest week, the aggressive nature of his disease required resuming treatment on January 15th. At his next session on January 22nd, the oncologist prioritized battling Harley’s primary condition and proceeded with another round, though his health hadn't improved. This decision quickly resulted in unforeseen complications.

Critical Discovery and Life-Saving Intervention:

After Harley’s January 22nd treatment, he experienced a severe cardiac/pulmonary event, including a rapid spO2 drop, breathlessness, heart palpitations, and extremely high BP, which worsened over hours. We decided at that point to seek a second opinion, which led to a referral from his original surgeon for an urgent visit to a pulmonary specialist at Farrer Hospital, where a CT Pulmonary Angiogram was performed.

The scan revealed hallmarks of persistent tachycardia, extremely high BP, and sudden, unexplained lung function deterioration unrelated to COPD or asthma. Thankfully, no tumours were found. With no signs of viral infections, pleural effusions, further embolisms or pneumonia, it was concluded that immunotherapy and aggressive combo chemo drug treatments likely triggered an augmented immune response, causing the cardiac event and lung issues which had been present long enough in his system to eventually cause his abrupt ‘event’.

As a result, all of Harley’s cancer treatments were halted for 4 weeks to administer proper heart & lung medications and a physiotherapy treatment that would stabilize his numbers back to normal. On February 24th, after a 4-week period without any cancer treatment, he began a new treatment protocol, closely monitored by his surgeon and the new team.

Phase 1 & 2 Treatments Halted - A New Approach Underway:

Due to the damage & vulnerability manifested by his heart & lung crisis, Harley will no longer have the option of immunotherapy, the one shining light we all had hoped would be curative. His original phase 3 curative option of a surgery to remove the bladder is now also out of the question. Due to the sustained damage his lungs endured it is unclear when or even if he will see his sp02 levels high enough to endure a lengthy surgery that complex in nature.

He’s now been left with a single yet hopeful treatment plan, consisting of daily radiation at Crawfurd Hospital and weekly chemotherapy administered from his original oncologist at Mount Alvernia. To be frank, we are only carrying on with the original oncologist due to the cost savings, as completing those cycles anywhere else is at least twice as expensive. His chemo protocols have also been reduced, from 2 chemo drugs down to a single chemo drug, Cisplatin.

During his new daily radiation treatment prep, Crawfurd Hospital performed a simulation with a CT scan, to zoom in on the areas in need of radiation and construct a positioning cast. From that scan the radiologist recommended a wider area of dosage than originally planned, expanding the radiation area to address the lymph node growth & the new growth in the bladder, potentially pre-empting any cancerous growth and to get ahead of any ‘worst case scenario’. This added scope & concentration has also added 2.5 more weeks to the initial 4-week treatment plan.

Financially:

The costs associated with these delays, including the steep price for his month-long lung & heart treatments, when included to the added cost of his new radiation therapy has depleted our resources significantly.

Mercifully, we have managed to secure a payment plan for his radiation treatments at Crawfurd Hospital, but with that said, any additional support, donations, or from just sharing this update to your own social circles will be of great help to Harley’s fight. Donations, thoughts and prayers will help us so much to prepare for any potential setbacks that may result from the new anomalies/growths in Harley’s bladder and lymph node.

Our financial situation is not insurmountable yet, only thanks to the miraculous donations & benevolent efforts offered to us in November & December, but we are now acutely aware that the unpredictable nature of this battle can never be underestimated, and looking at the future with these bills alone leaves us very concerned, should his new treatments fall short of their curative goal.

Our Renewed Call for Help

As of this update, we still need help to continue Harley's fight. The hope was that he would be well enough to travel back to Canada to receive his curative phases of treatments, thus offsetting any massive costs quoted to us from Singapore hospitals. That option is now off the table, & with that new reality, any donation, small, medium or large sent now will add to Harley’s arsenal of options and his ability to keep fighting back.

Please know that if you have donated previously, it was YOUR contributions and care given that allowed us to be fully prepared for the emergency that occurred through January/Feb. It wasn’t merely a medical intervention that saved him folks. It was the direct result of everyone who contributed to our original plea in the not-so-distant past … and that solidarity combined to become the singular ray of hope which literally provided the means for us to even seek secondary help… & receive the proper care. As mentioned, combined with the skills of Singapore’s doctors, this GoFundMe & his fundraiser in November at Hero’s Bar most likely saved Harley from suffering complete heart failure and potentially premature death.

There is a new fundraiser taking place this coming weekend for Harley at Blackbird, which was organized quickly when Harley’s band mates & friends heard of his treatment detours and the costs of his emergency issues. You can see more info on the upcoming show below, and even watch the live stream. There’s an auction happening as well, so if you’re watching on live stream and see something you’re keen to bid on, contact us and we’ll find a way to add yours to the bids.

The bottom line for us now is that Harley’s abrupt treatment changes added to the cardiac emergency is significant, draining, and hangs over us all when we look towards the future costs, as financially it’s even more obvious now than ever before that we need to be prepared for any eventuality. Despite these heavy challenges, Harley faces his treatments with immense bravery and a bold, strong resolve that he will see the end of this upright and healthy again. His heart and lung medications remain crucial in stabilizing his organs throughout the process, and with the specialist team involved now very carefully monitoring his condition & treatments, we all hope to see his respiratory improvement continue, to avoid the need for more radical & costly interventions for fighting his cancer.

Join Us in the Fight

This update is our own heartfelt effort to let everyone who blessed us with your time, efforts, donations, and work, know that Harley is still fighting hard, and to let you know that any way from which you can contribute moving forward will be considered sacred. Donations of any kind are a great help to us & help Harley in more ways than words can describe, even just by sharing this news on social media you are opening doors for help that might otherwise remain closed.

We remain hyper-focused on this, his remaining curative option now while preparing for any eventualities that may lie beyond; to gather & solidify any & all resources needed to fight against whatever this insidious, wretched disease presents. Your empathy, solidarity, and generosity rallied now will help us immensely, as it already has. At this crucial moment anything offered could provide a critical boost to the assistance we need now, and facilitate our preparedness for the weeks and months to come.

Again, every one of us involved thank you dearly for your unwavering support, along with our own prayers that this will be the last time there is a single word of bad news to report.

With love and regards from Harley & Genevieve, John Whynot, Stephanie, the entire GoFundMe Team, and all of those involved in the upcoming Blackbird fundraiser.

Hi everyone, my name is John and I am fundraising for a dear friend who needs our help in his time of need. *Please direct your attention to the latest update for some very timely and wonderful news. Some would say a Christmas Miracle!!! :)

Our Updated, but Still Relevant Petition:

Dear Family, Friends, Muzos, Amigos, Amigas, and Supporters,

It is with a heavy heart but unwavering hope that we reach out to you today. Our dear friend, musician, and multi-talented performer/songwriter Harley Warren (Umphrey) has recently been diagnosed with a rare form of cancer. It is known as ‘sarcomatoid carcinoma’. It developed in his bladder. The prognosis of this type of rare cancer ranges anywhere from 10 months to 5 years. If given the best treatments and those treatments being immediately available this prognosis can improve by months and possibly years.

Due to the painful complications of a tumour found on an emergency CT scan, Harley has already been forced to undergo an emergency surgery procedure to have the large cancerous growth removed, in order to relieve him of some of the worst symptoms. The procedure was completed in Singapore, where he and his wife Genevieve Monteiro live.

This news has profoundly impacted his life and the lives of all who hold him dear. Unfortunately, added to the impact of this sudden, unforeseen crisis was the cost of the aforementioned surgery, which ended up being all of Harley’s life savings, as well as costing his closest friends and musician colleagues tens of thousands of dollars of their own money, only to cover only a portion of the total charges and overages for that surgery.

In the face of this, Harley and Gen’s perilous existential and financial challenge, we launched this fundraising campaign to support Harley's fight towards recovery and to alleviate the financial burden that comes with such a diagnosis. This journey began slightly more than 4 weeks ago.

Thankfully, we have an amazing update on our original immediate Phase 1 and 2 goals of USD 50,000.00 (CAS 70,000.00): they have been fully funded (!!!). This sudden surge of funding came just in time, as Harley was approaching two months with little hope of receiving the required treatment, despite our collective diligent efforts here and at his fundraiser. The funds arrived through a perfect confluence of efforts, which is why we now truly believe in miracles.

With immense gratitude for all the donations, the remarkable fundraiser at Hero's Bar in Singapore, and the extraordinary kindness of a single, anonymous Canadian benefactor, Harley's initial treatments are now set to commence. His treatments will begin on Tuesday, December 17th, 2024.

This heartwarming news is only made possible by the incredible generosity and love shown by everyone involved.

So amazingly, it’s a giant Goals Achieved! Again, we’d like to direct those reading to the more detailed update below so you can be better informed on how it all occurred. As it turns out, friendship, combined with outstanding/phenomenal support, and some truly benevolent, selfless souls in this world can and do truly save lives.

The total goal we have now set, considering that Phase 1 + 2 of our 3 phased goal has been reached, reflects the remaining extraneous cost quotes detailed to us by his oncologist, urologist and radiation therapy specialists, which will extend beyond this chemo/immunotherapy and the radiation stage 2 that follows. Phase 3 specifically and inevitably involves either a bladder removal surgery, or the continuation/reapplication of very costly, longer term radiation therapy treatment. One of these options is an absolute certainty, the choice will depend on his updated prognosis once these initial treatments have been completed and he’s retested. These looming future costs will undoubtedly require more than we have acquired from this amazing GoFundMe campaign’s already massive successes.

Our phase 3 goal will now be set at USD 53,500.00 (CAD 76,000.00). Again, please take the time to read our latest update, as it explains in great detail how and why we arrived at this figure. If we can achieve that last remaining goal within the time frame of his current treatments’ completion, the campaign page will remain up for further donations until it reaches a cap of USD100,000.00, and then this campaign will be archived and we can all rest assured that our friend and dear soul is being treated properly, with no more looming financial catastrophes to hinder his ability to be prepared for any eventuality.

As mentioned, any extra funds collected beyond our overage limit can quickly become crucial. Essentially, our additional support will be used as a contingency/insurance measure for costs that may exceed the estimates provided for Harley’s phase 3, longer-term treatments. Non-Singaporean citizens know that large overages and 'cost-above-quotes' are likely to occur at various points during the entire treatment plan. By maintaining this campaign until our hard limit is reached, we hope to avoid depleting the gracious donations we’ve already received, which could quickly diminish and hinder Harley's financial preparedness for the next stage of his necessary treatment. We aim to avoid putting this campaign on the back foot and prevent Harley and his family from facing further financial crises.

We are deeply grateful for your support. Thankfully, the timing of donations is now more flexible, so for those generous donors who have already given and wish to continue contributing, your continued commitment and love would be an invaluable blessing to our cause.

The bottom line is that we are achieving incredible successes by coming together to support our talented friend and colleague in his battle against a rare and aggressive cancer with the best available treatments. We cannot emphasize enough how invaluable the contributions to this campaign have been for Harley and Gen on so many levels. Together, we can continue to make a profound difference in addressing Harley's future medical challenges. By combining our hopes and prayers with any extra funds we donate to his cause, we might realistically see Harley outlive his prognosis by decades. This will not only be due to our compassionate donations but also because, as those of us who know Harley are well aware, he is fighting this battle with immense determination and resilience, refusing to let it defeat him.

We deeply appreciate your continued generosity, compassion, and solidarity.

With heartfelt gratitude,

John Michael Whynot, Harley Warren (Umphrey), Christo Alexander, Myra Vaughn, Genevieve Monteiro.

Contact us anytime through our GoFundMe email, and we will be posting regular updates on events, fundraising auctions, bake sales, group walks, picnics, etc...