Mission: Curing the Incurable

March 8, 2023 by Chris Millroy
Here is the livestream link for Sean's Celebration of life this coming Saturday March 11th @ 1pm.

https://youtube.com/live/kunyQdOOFxA?feature=share
February 4, 2023 by Chris Millroy
1/23- Sean passed away.

He was our hero & a champion for all children & young adults with cancer. Thank you to everyone for supporting him & following his journey. We will continue his mission. His legacy will live on through all of us.

Onwards!

Sean Christopher Millroy
August 1, 1991 - January 23, 2023
February 4, 2023 by Chris Millroy
1/10- We completed the MRI. The MRI found a mass behind my right eye and signs of Leptomeningeal disease, which is cancer of the lining of the brain. It is a more severe disease associated with terminal cancer. My doctors felt they had to share that information but still want me to pursue my goal which is what I want. The treatment choices are radiation to the eye to relieve symptoms or radiation to the whole brain to try to eliminate the disease. I choose five session of radiation to the whole brain.
February 4, 2023 by Chris Millroy
1/5- Ommaya treatment #7 , also known as dog day , we got cuddle time with Kidd.

1/7- After a three day break from chemo (and I wasn't feeling so good) we stuck in another PT and managed to work on transfers , leg exercises and one stand . Bryan always says if we are moving we are doing something. So getting that stand in felt like another step in the right direction.

1/9 - I was unable to do chemo due to low platelets and a bulging right eye. At my regular scheduled appointment Dr. Anderson recommended I get admitted to get these issues addressed. Upon being admitted they ordered an MRI of the brain.
February 4, 2023 by Chris Millroy
1/4- Another productive PT. Session where I was able to stand unassisted with the walker. It was a very important milestone to take towards walking again. Grateful for Bryan's help.
December 2, 2022 by Sean Millroy, Organizer
So I didn't plan for this to be the most harrowing update thus far, but when emergency surgeries get thrown into the mix, you've got to adapt the Facebook post...buckle up for this one - and make sure you have plenty of time to read

What has happened in the last month?

11/7 - I received a second dose of Pembrolizumab, an immunotherapeutic drug that targets the PDL1 inhibitor.

11/10 - my recent brain MRI showed growth in a mass behind my
left eye. My radiation oncologist moved quickly to schedule a treatment the next day to stop the growth.

11/11 - my medical oncologist decided to switch to a new chemo regimen for the upcoming week (Irinotecan + Temozolomide), which brings more side effects but has good data as a relapse protocol for Rhabdo.

11/13 - my pain started to worsen in multiple areas, and endured a few sleepless nights, so we scheduled an appointment with the palliative medicine doctors to get on some stronger pain medications.

11/16 - I started using a pain patch to address the increased pain. It provided almost immediate relief relative to the pain levels I was dealing with.

11/17 - we met with my radiation oncologist to schedule the next round of scans to determine what needs to be addressed moving forward. while the pain patch seemed to be working, I was having more issues walking and had a significant breakthrough in my pain that lasted through the night.

11/19 - I woke up and had even more trouble walking, needing assistance from my mom just to make it to the bathroom. My bladder function was impaired as well. My mom called an ambulance and I was shuttled to the ER.

We did an immediate MRI of the thoracic spine, and found a tumor between t4-t8 of my spine that was causing compression of the spinal cord. the spinal surgery team recommended an emergency debulking procedure where they would remove the bulk of the tumor to relieve symptoms and treat the rest with radiation.

11/20 The debulking surgery went ahead successfully, with Dr. Clifton (pictured with me below) discovering that the two masses were actually one large tumor that they were able to remove in full. There’s still residual pieces left over, but they’ll be able to treat those with radiation, and the procedure gave me immediate improved sensation in my legs and control of my bladder. Thanks for all the visits, Doctor - they gave me a real boost.

11/21 I continued to feel small improvement in the function of my lower extremities. This setback was a bit shocking, but we still were focused on getting back on a chemo regimen to treat the systemic disease. Dr. Anderson met with us and discussed plans to administer a more intense chemo this week that would have more effectiveness in treating cancer that penetrated the central nervous system. He also planned for an Ommaye catheter to be implanted in my head to deliver chemo that could treat the brain and spine if we had any issues In those areas moving forward.

11/28 - I made it through the Ommaye catheter procedure with no complications!

11/30 I was able to stand up for 15 seconds. After another day of rest and therapy, we were approved to be transferred to the Beachwood Rehab facility for 2 weeks, where I will continue my physical therapy and bring my walking back up to 100%. The challenges keep coming, but we continue to bounce back.

12/2 - I’ll be discharged from the hospital tomorrow to begin rehab at Beachwood. We also received a nice surprise this morning from Dr. Anderson - the full genetic sequencing of my tumor (done by the Cleveland Clinic). The sample is on its way to CARIS, which will develop full exome sequencing of the tumor and identify potential targets for novel therapies.

Things are moving fast now, and we’re moving right along with them!
I want to thank all the special people who've sent messages, letters sat on Facetime calls, gifts, and good vibes over the last month (especially in the last week)...while this is technically my mission, this is easily the most difficult chapter thus far, and your support is quite literally keeping it going through the hard times. So thank you, thank you, thank you for doing your part to help bring my vision a bit closer to reality.
In the words of a close family friend, we don't know where this mission will take us...but we do know it's going to make for one hell of a story.
Onwards,
Sean Millroy
November 5, 2022 by Sean Millroy, Organizer
I've been slacking on the updates, but that doesn't mean we haven't been busy pushing the mission forward...here's what I've been up to since my last post:

10/14 - I underwent a procedure called Cryoablation on my right hip in which they extracted cancerous tissue from my body for testing, then froze and cut off the rest of it to kill the diseased tissue.

Note: This tissue showed that my cancer may have mutated from Embryonal Rhabdomyosarcoma to Alveolar Rhabdomyosarcoma (PAX-FOXO fusion positive). This is a more aggressive variant, and uncommon to see, but it can happen, and brings us a little closer to knowing what targeted treatment might be suitable for me.

10/15 - I was briefly hospitalized for a neutropenic fever (a fever caused by low platelets/blood counts). Luckily I didn’t have an infection, so I was just monitored for a few days.

10/17 - A chest CT showed excess fluid in my left lung, so I underwent a procedure called a thoracentesis to drain the fluid.
10/19 - I was having pain in my left side of my chest, so I received one SBRT (radiation) treatment to alleviate symptoms.

10/20 - I received another SBRT treatment on my femur where there was a hotspot on my last scan.

10/27 - I was unable to do chemo due to low platelets.

10/31 - Platelets started to rise, so I was scheduled to have a Pleurex catheter installed to drain fluid from my lungs. The fluid will be sent for genetic testing at the Cleveland Clinic and Caris.

Slowly but surely, we're getting things under control, but you'll have weeks like this where chemo is postponed, you feel stuck, and it's always 2 steps forward, 1 step back. Still, we're moving closer to our goal, and it'll all be worth it as I get healthier and pinpoint the more targeted treatments that could cure me. That's what this is all about.

Onwards,
-Sean
October 13, 2022 by Sean Millroy, Organizer
So it’s been a while since I’ve posted an update…and that’s because this chapter of the mission has thrown me even further into the fight…

Here’s what’s happened since my last update-

9/22 - I started having double vision and some restriction in my speech on the left side of my side of my face. I did an MRI of my brain and they found two new masses on the left side of my skull base and an area called the sagittal sinus.

9/23 - I met with my medical oncologist to discuss the results of my PET scan, which showed growth in other lesions and masses in my chest and hip, which meant the chemo we used was not working. We decided to start a new course of chemo + immunotherapeutic drugs the following week.

9/24 - 9/25 - Over the weekend, my throat started to get more sore, and I began to develop mucositis, which made swallowing food more difficult.

9/26 - I went into the Taussig Cancer Center to start a week of Gamma Knife radiation for the new head and neck masses, but couldn’t complete the treatment because of the mucositis.

9/27 - Luckily, I was able to get through the Stereotactic Radiosurgery for a tumor on the spine, but my mucositis (and swallowing issues) continued to worsen.

9/28 - I had a day off in between treatment, but I lost my voice completely and could not eat any food.

9/29 - I convinced the Gamma Knife team to let me try another treatment, and completed 90% of it, but had to be transferred to the ER due to dehydration and they gave me a breathing treatment.

9/30 - I was transferred to the head, neck and throat unit, where they installed an NG tube into my nose to start feeding me intravenously.

10/2 - I was told by a visiting surgeon that the damage to my 10th cranial nerve would likely have me unable to talk or sing permanently.

10/4 - I completed my first full radiation treatment to the head and neck masses.

10/5 - after the second radiation treatment, I had an episode that brought my heart rate to over 200 bpm, had to be given meds by the response team, and spent the entire day on a heart monitor.

10/6 - I completed my 3rd stereotactic radiation treatment.

10/7 - I completed my final SBRT and noticed my voice starting to regain strength. That afternoon, I had a procedure to remove the NG tube and install a Peg tube through my stomach.

10/8 - I started feeding through the stomach tube without any issues.

10/9 - I was discharged from the hospital.

10/10 - I finally started the new course of chemo and immunotherapeutic drugs (with support from Lucy )

10/11 - I sang the first verse of “Hey Jude.”

I'll post more videos on Facebook and the YouTube over the next few days, so stay tuned. Special thanks to the Cleveland Clinic for all their incredible work over the last few weeks...I feel nothing but gratitude for their tireless service in my recovery, and the last few weeks are further proof that we are on our way to doing something special here.

Onwards,
Sean Millroy
October 9, 2022 by Chris Millroy
(See recent anonymous donation Oct 9th) Thanks to our wonderful neighbors and friends (@PWC/BF) for all of their time and effort organizing/volunteering and attending last weekends fundraiser for Sean. What a great success and what a beautiful day to eat, listen to music and be part of something so special! Our family can't thank you enough for everyone's time and effort. Be well!
August 19, 2022 by Sean Millroy, Organizer
The mission continues...

After a busy few weeks, I got to wind down in between treatments in one of my favourite places - Pittsburgh!

Since Pittsburgh is so close to Cleveland, Dr. Anderson let us spend our time off here, where we feel more at home...

And although we’re in a bubble, it’s nice to be here and squeeze in a few socially-distanced visits with close friends. A real full-circle moment for us in our ‘tour for the cure…’

Thanks to Rachael Dudash & the Dudash family for your unwavering support for the past 3+ years, especially the cards and unofficial medical consultations!

Finally got to meet the legendary Stephanie Rose of Young Adult Survivors United, who was nice enough to stop by and brainstorm ideas for the mission…so excited to collab with her and the other badass young adult survivors on some cool stuff in the months ahead…stay tuned.

And an extra special thanks to my extended family Jimmy Craig and Beth Craig, who are letting us crash at their house for as long as we need. You are amazing friends, and I’m in a much better place to Cure the Incurable thanks to your generosity.

In other news, we found out that there were no tumor cells in the tissue they tested from my recent bronchoscopy (which is great!), but that means we’ll have to find new tissue to test to determine the best targeted treatments to potentially cure me.

That will likely happen in the next few months, but for now I’m catching up on sleep, exercise, and quality time with old friends in preparation for the next round.

Onwards,
-Sean
August 6, 2022 by Sean Millroy, Organizer
We made it to Cleveland!

It's been a crazy week: with radiation on Monday, a flight on Tuesday, doctor's appointments on Wednesday, labs on Thursday, and chemo on Friday...

But cancer doesn't take a day off, so neither do we.

I met with my new medical oncologist, Dr. Peter Anderson, who's even more interesting in person than over Zoom.

Although I consulted with many other talented, capable oncologists, I felt the most comfortable being treated by him due to his out-of-the-box approach and his emphasis on more personalized, targeted treatment.

I felt even more assured once he had me starting a new chemo regimen less than 48 hours after our first appointment.

We're about to embark on a long, challenging journey to find my cure...

And once we find it, I'm sure he'll have played a huge role in getting us there.

The mission is entering a new phase, and I couldn't be more ready for it.

But in order to complete the mission, I have to be patient...

That means staying calm, and focusing my energy on what we're doing now, fighting the urge to seek relief from uncertainty.

In my experience, consistency beats intensity every time.

So for now, I'm crossing my fingers for another good response to chemo. We'll see what the next few months bring.

P.S. Thanks for all the birthday wishes (and donations!)
August 1, 2022 by Sean Millroy, Organizer
Today’s my 31st birthday…and I’m celebrating with some radiation.

This is the last treatment I’ll have in Montréal. I won’t miss this mask I have to wear for treatments to keep me in place - but I will miss the wonderful doctors and caregivers who have treated me here.

Funnily enough...on my 30th birthday last year, I was getting stem cells sucked out of my neck through a catheter to prepare for my transplant, as you can see in the photo below. No matter what befalls me in the years ahead, I will never forget these two birthdays

These weren't the birthday experiences I necessarily wanted, but if it’s what I need to do to put this chapter behind me, I’ll do it with a smile...

...and while I don’t know what my 32nd birthday will bring, I’m grateful to have these birthdays (and my good health, for the most part), as unusual and unique as they are. Not every cancer patient is as lucky.

In other news, we're going to Cleveland - more specifically, the Cleveland Clinic - for phase 1 of my ‘Curing the Incurable’ tour! I’ll be meeting with Dr. Peter Anderson, a rhabdomyosarcoma expert and all-around wonderful guy to (hopefully) start a chemo regimen that gets me into a ‘good remission,’ and prepares me for whatever clinical/experiment treatment I will need to be cured.

The next few months are full of uncertainty, but that’s how life goes, right? At the very least, it won't be boring.

I’ll keep you posted on how things go in the weeks ahead - see you in Cleveland!

Sean
July 15, 2022 by Sean Millroy, Organizer
$10,000 raised in 2 days! That's exactly the energy we need to "Cure the Incurable."

Here's a picture of me after my bronchoscopy yesterday. In order to do more genetic testing on my cancer, they needed to go into my esophagus and lungs to grab some new tissue to test. As you can see, I'm pretty thrilled about it!

Soon, we'll be using a portion of the funds donated to get full sequencing and genomic testing done to find targets for personalized treatment that could have the potential to cure me. Will let you all know as soon as we have those results.

In the last few weeks, I've consulted with sarcoma experts at Dana Farber in Boston, Memorial Sloan Kettering in NYC, and the Cleveland Clinic. I should be making a decision on where I'll go for phase 1 of my 'Curing the Incurable' tour very soon. Even though life is a bit crazy, I'm still very excited about teaming up with some new doctors to tackle this next round of treatment.

Until then - thanks to everyone for helping me get one step closer to my goal. Keep spreading the word about the mission, and keep going, no matter what you're dealing with! You have what it takes to survive.

-Sean