What would you do as a parent if you found out your first grader had brain cancer? What would you do if less than four years later, after several successful surgeries to remove the tumors causing the brain cancer, you learned a new tumor had formed, even closer to the brain stem than the previous ones, and this new tumor was deemed inoperable?

After the initial shock, fear, despair and anxiety, how would you go about advocating for your sick child, making sure you’ve exhausted every possible remedy while trying to take care of the rest of your family and yourself? 

Thankfully, those are questions most of us will never have to answer. But for Jennifer and Doug Patchin of Creve Coeur, who last month learned their son Drew’s cancer prognosis is dire, making as many memories together as a family is now a way of life.

To help achieve this goal, they have turned to social media. Both Jennifer, 42, and her sister Debbie “Aunt Bebbie” Schultz, 44, have a near-daily presence on Facebook where they keep the 1,000-plus member “Drew’s Crew” community up to date on his medical condition as well as the various fun adventures they are having while Drew is now asymptomatic.

“The oncologist said he definitely recommended planning travel, and everything Drew wants to do while he can,” wrote Jennifer in a recent Drew’s Crew post. “I can’t even believe we are working on a bucket list for my baby who is almost 10 (on March 20). We are scrambling to plan everything we can think of for this spring. It’s going to be a challenge enjoying these things knowing why we are cramming them all in like this.”

Cram, says Jennifer, is an understatement. Consider that in the past couple of weeks, Drew, a fourth grader at Bellerive Elementary School, along with his 5-year-old brother and best friend Tyler:

• Attended the home opener of St. Louis City SC where prior to its start, the two got to sit on the bench with some of the soccer players
• Shook hands with Kansas University basketball Coach Bill Self, and received his autograph, as well as visited with some of the team’s players in the locker room after enjoying the game in primo seats
• Practiced basketball skills with members of the St. Louis Billikens
• Signed “contracts” along with others on the University of Missouri St. Louis Tritons baseball team, which last year “adopted” the brothers as honorary teammates
• And toured a Domino’s pizza facility, where in addition to making pizza, they rode in a new electric car and left with bags of swag including fun pins, personalized tumblers and a Domino’s Lego set. 

Oh, and come noon on Saturday, March 11, Drew will be honorary chairman of the 2023 St. Louis St. Patrick’s Day Parade, leading floats down Market Street from his perch atop the back of a stretch convertible limo, decked out in a custom-tailored, Shamrock-green sports jacket and matching tie. Also riding with him will be Tyler, his parents and Aunt Bebbie while friends in his cub scout pack walk behind them, joining other Drew’s Crew supporters cheering on “Super Drew” and “Super Sib Tyler.”

Most of these opportunities came about because of Jennifer and Debbie’s social media posts and people reaching out to help. People like Sara Frieberger Brooks, a self-described “nice Jewish girl from Olivette” who has been volunteering with the St. Pat’s parade for 12 years. 

“Drew loves parades and mascots. And Jennifer asked for ideas for his bucket list,” said Brooks, who lives in Chesterfield. “That motivated ‘this nice Jewish girl with a German maiden name who works with the Irish parade’ to do whatever possible to give Drew a memorable experience – and to give his family a special memory to hold onto in the months and years to come.”

If all this activity sounds overwhelming, Drew and Tyler seem to thrive on it. At Sunday’s Purim carnival at Temple Israel, where the family belongs, both boys dressed in Pokemon costumes darted among the various attractions, stopping for a minute at one, then zooming off to another. 

Drew’s cancer journey, as his family refers to it, began in 2019 when intense, vomit-producing headaches led to a diagnosis of Anaplastic ependymoma, which required two surgeries totaling 29 hours at St. Louis Children’s Hospital to remove the brain tumor. That was followed by 30 rounds of radiation. 

For the next two years all seemed fine, until a routine scan in the fall of 2021 detected a new, much smaller brain tumor. Drew had surgery at Children’s to remove it and then went to St. Jude’s Children’s Research Hospital in Memphis for another 30 rounds of radiation. Jennifer, a health coach, stayed with him for the six weeks he was there, in St. Jude’s sponsored housing, while family members visited frequently.

Then last month another routine scan delivered devastating news. Doctors noticed a spot in a slightly different, more dangerous location than Drew’s other brain tumors. Both doctors at Children’s and St. Jude’s agreed that the tumor was inoperable, and they no longer advised radiation as an option. 

Next week, Drew will start a regimen of oral chemotherapy. Its intent is to slow or stop the cancer progression, but it is not curative. It won’t shrink the tumor, though it may keep it from growing bigger.

“One thing about the chemo, it won’t leave him immunocompromised so he can still go to school, and continue with Ninja classes, basketball, Cub Scouts and horseback riding lessons. And Tyler can continue at pre-school (at TI)” said Jennifer, adding that the family is proactively seeking second opinions from neurosurgeons around the country as well as information about clinical trials or protocols for which Drew might qualify. 

Once again, Jennifer’s social media posts have helped in this regard. After reading about Drew’s plight on Facebook, a Parkway Central High School friend of Jennifer’s who is now a physician in North Carolina connected her with Duke (University) Cancer Center Brain Tumor Clinic, where she and Drew are seeing doctors this week to see what, if anything, can be done. A college friend who also saw her social media is helping to broker a visit to MD Anderson Cancer Center in Texas, one of the most renowned brain tumor treatment and research centers in the world.

More than anything, say the Patchins, they want Drew to enjoy life, laugh and have fun for as long as he can. And while they’re also concerned about the impact Drew’s cancer has on Tyler, they want him to have as many lasting memories with Drew as possible. To that end, the family went on three separate Disney adventures last year (two of them had been postponed because of the pandemic). This year, they have planned a Disney cruise in Alaska. 

“Some of these trips have been funded through cancer organizations, as well as friends who have donated hotel points and the like, and some we are paying for,” explained Jennifer. “Even with the ones that are funded, there are still extra expenses.” 

When Jennifer and Doug, who is an engineer at Boeing, told Drew that his cancer had returned, they knew he would be anxious. He takes medicine for severe anxiety as well as ADHD and has been known to run away on a few occasions.  

“He is flight or fight when he is anxious,” said his mother. “His anxiety has increased every step along the way. He has a lot more anxiety around IVs than he does his cancer.

“When we told him his cancer was back, we explained the fight will look much different,” Jennifer continued. “He’s going to take a lot of pills and have a lot of blood draws and IVs and because of that, we want to do fun stuff for him. People want to do things for him because they want to show they are supporting him in his cancer fight.”

It takes a village. It takes Drew’s Crew. Nobody understands – or appreciates – that better than this family.

If you’re interested in supporting Drew and his family in their fight against recurrent brain cancer join the Drew’s Crew Facebook page. In addition, a family-friendly fundraiser is planned for April 23rd from 1-4 p.m. at Temple Israel to help the Patchins with medical and other related expenses. Click here to register.

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