Deacon's Defenders - Next Steps

Hi, my name is Emily Brown and I'm organizing this Go Fund Me for my amazing (warrior) nephew, Deacon (15) and his incredible family, the Orlowski's. For those of you who have been following and faithfully praying for Deacon throughout his almost 3-year long battle with cancer, THANK YOU! Words can't express the Orlowski's (and all of Deacon's extended family's) depth of gratitude for your continuous prayers. I'm going to give a quick recap of the events that have unfolded over the last month or so; for those of you who don't know Deacon's story, I've shared a brief history further down in this post. Thank you, thank you, thank you for taking the time to read this, pray, and if God lays it on your heart, donate financially to this wonderful family.

On Tuesday, September 7th, Deacon was scheduled to begin a new chemo regimen - a new plan that wouldn't be so hard on his body, to give him a chance to keep working to fight the cancer but not cause him to need so much downtime between treatments for his body to recover. On that day, however, Deacon's team of doctors requested scans to be done based on the swelling in Deacon's face. He had an MRI done on Thursday the 9th and a PET scan on Monday the 13th; by the next day their family received very difficult news - the MRI and PET scans confirmed that the tumors had expanded, and there were a few new small spots on his ribs and vertebrae. Deacon's amazing team of doctors quickly began exploring the possibility of immunotherapy, after determining that long-term chemotherapy options had been exhausted. After two very anxious and heavy weeks, Dr. Kitchen confirmed that Seattle Children's Hospital has two immunotherapy clinical trials that align with Deacon's diagnosis and the possibility of him being a candidate for therapy. There is a lot of data that the medical team is still in the process of reviewing on Deacon's medical history and candidacy, but it is looking favorable that he will be accepted as a participant in one of the two trials for treatment. The challenge right now is time, as both clinical trials do not begin until November. With the aggressiveness of his cancer, Deacon underwent 1 more round of chemotherapy, and will undergo 1 more round of radiation beginning this Monday, as bridge treatments until he and his family can get to Seattle. Bridge treatment is considered a treatment that will help 'bridge the gap' of time to get to the next step; in this case, it is immunotherapy treatment for Deacon. To clarify, Deacon's submission is still in the process of being reviewed, so there are still many unknowns at this time, but as Kori has shared, "we have a plan, and we still have hope."

Many people have reached out to Kori and Aaron asking how they can help; fervent prayer for their family and Deacon's medical team is the number one priority, but there are also going to be many continued expenses, especially in this new phase of the journey with Seattle and all the accompanying travel, housing costs, etc. Please consider blessing this wonderful family with a monetary gift of any amount to help offset these expenses; it is a privilege for us all to help carry them during this incredibly challenging time. They have been, and continue to be, faith-filled warriors - thank you, from the bottom of my heart, for continuing to join us in defending our superhero, Deacon.

The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them. Psalm 145:18-19

Deacon's Story:

In December of 2018, Deacon Orlowski had surgery to remove what doctors thought was a benign tumor in his jaw. After the tumor removal and 11 biopsies, the tumor was STILL thought to be benign. It wasn't until January of 2019 and a special lab process that Deacon was diagnosed with Rhabdomyosarcoma, a rare form of pediatric cancer.

Following the diagnosis, Deacon endured 57 weeks of chemotherapy and radiation treatments. After those 57 weeks, in June of 2020, Deacon went for his final appointment and rang the bell as he left. He came home and celebrated with family and close friends, but 2 days later his parents got a call that Deacon's final scans showed that his cancer had returned.

Deacon immediately started "bridge therapy" with a high potency chemo. During this time, they did a biopsy on Deacon's tumor to gene map it - the plan was to start targeted gene therapy as soon as the results of the genetic mapping came back. The chemo ended, and transitioned immediately into the targeted gene therapy.

A couple days into this new treatment, Deacon noticed that his tumor (which was quite large and visible) had softened and gotten smaller. It continued this trend over the next couple of weeks, and it seemed that the bridge therapy did it's job and killed the cancer.

The months of August and September of 2020 were spent doing gene therapy which entailed 5 pills a day. Deacon was feeling great, as the pills for this course of treatment caused little to no side effects (unlike the chemo). In early October of 2020, however, Deacon started to have pain in his jaw and noticed his cheek was beginning to swell again. On October 6th, it was confirmed that the tumor had returned.

So once again, after almost 2 years into the journey, the Orlowski’s were forced to change course. Deacon began chemo and radiation immediately; radiation entailed trips down to Beaumont, 5 days a week for 6 weeks (on rotation), and chemo required 5 day infusions every 4 weeks at Mott Children's Hospital. After several months of intense treatment, the Orlowski’s received encouraging news from Deacon’s scans at the end of January, 2021 - the tumors had shrunk significantly. Deacon began a new targeted therapy drug and outpatient chemo treatments, but at his next scans in April, it was discovered that the tumors were growing again.

Since April, the Orlowski’s and their team of doctors have had to make many tough treatment decisions and frequently shift course based on how Deacon’s body reacted to the now necessary, higher doses of chemo. They’ve had to navigate treatments, hospitalizations for infections after treatment, low counts with multiple blood and platelet transfusions, finding a happy medium on a treatment schedule and dosage, and the physical, mental, and emotional toll that this journey has taken. Scans in early July revealed that the more intense chemo treatments were making an impact; the tumors had shrunk by approximately 25%. On July 19th, Deacon went in for his next round of chemo, this time with reduced dosages, with the hope that the chemo would keep doing its job against the cancer cells while giving his body a chance to recover, and hopefully out of the hospital so often. The last couple of treatments had been very hard on Deacon; his body began taking longer and longer to bounce back and recover to levels suitable to start chemo again, even with drugs that helped boost his bone marrow production. Due to low counts every time they were checked, prior to his next scheduled chemo treatment, his next treatment had to keep getting pushed back; the 5-day inpatient chemo treatment the week of July 19th ended up being his last full chemo treatment until the bridge therapy he just completed at the end of September.

If you would like to follow Deacon's journey, here is the link to his CaringBridge page:

https://www.caringbridge.org/visit/deaconorlowski