A visit with a "notorious" patient

A few weeks ago, I had the opportunity to meet a special patient, Zach Guillot. The 7-year-old is notorious, as his mom says, around the hospital because of the “antics” he’s involved in on the floor where he is undergoing chemotherapy and waiting to receive a second bone marrow transplant.

Zach was readmitted to Children’s Dec. 16 after relapsing from his battle with acute myeloid leukemia.

One of his antics includes riding his Big Wheel around his impatient floor at night. And he's recently found fame among Children’s employees for the videos he and his Child Life specialist have recorded.

Among the 14 videos on his YouTube channel, there’s a legendary lightsaber duel between Zach and his “Sith Nurse” caught on camera, animated shorts and adventures as Indiana Jones and Ironman.

When I walked into his room, he introduced himself with some playful meowing. Being a bit of a kid myself, I thought it was hilarious. But I really had to hold back from laughing when he welcomed his doctors to his room by hissing.

Zach’s mom Julie said she and her husband Jeff have appreciated how the staff at Children’s has allowed Zach to be himself during his stay in the hospital.

“There’s more to recovery than medicine,” Julie said. “The staff keeps it lighthearted and play with him. It really helps with the whole experience. It’s the little things that can make a kid feel better.”

I certainly saw that's the case with Zach. It’s so encouraging to see a young child being himself, in high spirits, playing Wii and meowing at guests, while going through something as challenging as chemotherapy.

If you’re interested in helping kids like Zach, join the bone marrow registry or participate in the Be a Match Bone Marrow Drive held at Children’s annually on Valentine’s Day. For more information on times and locations for the drive visit marrow.org.

Back in the game

September is National Childhood Cancer Awareness Month. View a gallery of photos of children with cancer called “For The Moment” that showcases a day in the life of cancer patients and their families – whether at home, their struggles in treatment and through recovery.

Matt Burpee, 7, is enjoying first grade and playing soccer with his team, The Alligators (a name Matt chose), and that’s pretty amazing. You see, after the onset of what initially seemed like a virus, Matt was diagnosed with medulloblastoma, the most common form of malignant brain tumor in children. Matt’s neurosurgeon said the little boy from Heath, Texas, might not be able to run after his cancer treatments were completed. But thanks to a combination of early detection, neurosurgery, radiation and chemotherapy and a great medical care team, Matt is doing well and has returned to the sport he loves.

The Burpee family first became worried about Matt last October when, during one week, he developed severe headaches and vomiting. The family’s pediatrician referred the family to Children’s Medical Center at Legacy in Plano, where Matt received an MRI that helped diagnose the tumor in his brain. From there, the family went to the Children’s downtown Dallas facility, where Matt had surgery the next day.

“It was quite a shock,” said Matt’s mom, Staci Burpee. The surgery, performed by Dr. David Sacco, was almost emergency in nature due to the large build-up of cerebrospinal fluid in Matt’s brain. That is what had been causing his headaches. Dr. Sacco successfully removed all but one small spot of tumor that had spread to another part of Matt’s brain and Matt then spent two weeks at Children’s, whose Center for Cancer and Blood Disorders is the only National Cancer Institute-designated pediatric oncology program in North Texas.

Radiation therapy
After 6 weeks at home, Matt began the next stage of his treatment: 31 radiation treatments. The treatments went on 5 days a week for 6 weeks and were completed after the New Year.

Radiation was tough on Matt, said Staci. He had to be sedated for each procedure — the patient has to remain absolutely still during treatment, tough for anybody, but especially a small child — and he would wake up fighting, she said. Plus, he got an extra dose of radiation directed at the small spot of tumor left in his brain that couldn’t be removed during surgery.

Additional treatment
But Matt’s treatment wasn’t over yet. To ensure the best possible outcome and to rid his brain of any remaining cancer cells, Matt had to have 6 months of chemotherapy. His schedule was two weeks on treatment and two weeks off. Chemo wasn’t as bad as radiation, said his mom, because Matt loved the playrooms at Children’s, where he could do arts and crafts. “He’s a very creative kid.” His treatment was led by his neuro-oncologist, Dr. Laura Klesse.

Matt’s next big day is in November, when he will receive an evaluation by his neurology team and the oncology team. It’ll be a full-scale assessment of where he is in his process of recovery and will include his neurosurgeon, Dr. Sacco, his neuro-oncologist, his neurologist and Children’s School Services, among others. Said Dr. Klesse: “The assessment gives us a good team approach to Matt’s care. If any issues arise, we will deal with them there.”

The next step in Matt’s care is an MRI every 3 months to see if his brain remains clear of cancer cells. That will likely continue for the next two years. After that, he will continue to have periodic MRIs and clinical assessments.

But to Matt, the most important things are the right here and now, playing with the Alligators. His dad, John Burpee, is the coach. Thanks to the dedicated care team at Children’s, Matt’s back in the game.