Stephanie Chavez

DIPG Interview- Kristine Wetzel

Imagine walking into the doctor's office because your daughter has been sick. She has
been throwing up, having fever, and losing her balance. You think she has the flu. Then the
doctor tells you she only has a few months to live because she has DIPG, a rare disease
caused by a cancerous tumor in the pons of the brain. You dont know what to say or think. You
pinch yourself hoping this is all just a dream, but its not. You start crying. You take your
daughter to another doctor, hoping that the first doctor had made a mistake. The second doctor
confirms the diagnosis. What do you do? How do you react? This is only the beginning of
Kristine Wetzels story. Kristine was the mother of McKenna Wetzel who was diagnosed with
DIPG when she was only 7 years old. After McKenna eventually passed away, Wetzel
decided to start a foundation to raise awareness, raise funds for further research, and to give
hope to families.
DIPG (DIffuse Intrinsic Pontine Glioma) is a tumor found in the pons of the brainstem,
which is the part of the brain located in the upper part of the brainstem that controls a lot of our
actions such as breathing, swallowing, hearing, and balance. DIPG is said by scientists to be
most probably caused by a mutation in a gene named H3F3A. Of the 50 DIPG tumors included
in this study, 60 percent had a single alteration in the makeup of the H3F3A gene. When the
mutated gene was translated into a protein, the point mutation led to the substitution of
methionine for lysine as the 27th amino acid in this variant of histone H3 protein. Another 18
percent of the DIPG patients carried the same mistake in a different gene, HIST1H3B, said
Wetzel. Despite these indications, the cause of DIPG has not been found. It continues to take
the lives of children aged 0-14 years old. The reason why it is only found in children is not clear
at this point. There is no cure to this disease; therefore, DIPG has a zero percent survival rate.
The treatments that are offered to help expand the lifetime of the children are radiation and
experimental chemotherapy.
Doctors usually give a patient with DIPG approximately 9-12 months to live because the
tumor expands very rapidly and takes the child's ability to breath. Wetzel said, McKenna
handled her diagnosis with grace and courage. She was frustrated and angry by her loss of
mobility. She fought every day to be as normal as she could be. She insisted on going to
school, even after radiation treatments. Just like many other kids diagnosed with DIPG,
McKenna wanted to feel like everyone else. Wetzel did everything she could to help McKenna
go through this difficult diagnosis. She said, Our primary role was to give our child the best
quality of life possible and to do everything in our power to make sure that we had investigated
every possible treatment around the world. As a parent, Wetzel had no choice but to do the
best she could to enjoy time with her daughter before she passed away.
After McKenna passed away, Wetzel wanted to find a way to help look for a cure for
DIPG. She started a foundation named the McKenna Claire Foundation. We are learning new
things every day (some of which I can't talk about yet), but it seems the more we learn, the more
complexities we discover and we realize just how much work has to be done, said Wetzel. I
think that it will take a multi-pronged approach to cure this disease. That being said, I'm not sure
that DIPG will ever be cured in the traditional sense. It is my personal belief that it will be treated
more as a chronic illness. Either way, the cure is many years in the future.
The reason why it is so hard to find a cure is because, The tumor is infiltrated

throughout the pons,which controls all of our vital activities like heartbeat, breathing, etc. Most
doctors would not operate or biopsy the tumor when the child was diagnosed. These prevented
research from moving forward on the disease for over 50 years. The reason why is because
the tumor grows in a very delicate place. This makes it hard for doctors to operate. Aggressive
surgery would cause severe damage to neural structures vital for arm and leg movement, eye
movement, swallowing, breathing, and even consciousness.
There is a lot of current research happening around DIPG. Researchers are now
working to understand how mutations in H3F3A and HIST1H3B impact cell function and
contribute to cancer. The funding for the research is mainly from foundations like Wetzels that
donate all of their funds to further research. Wetzel said, The most difficult thing about running
this foundation is becoming close to the children and families who continue to be diagnosed. We
relive our nightmare every day in the hopes that someday the next child diagnosed will have a
chance at hope. Also, the slow rate at which the clinical trial process works and the fact that for
everything we learn about the disease it only seems to raise more questions about treatment is
extremely frustrating. We know that children diagnosed today still don't have a chance at
survival.
Our goal for this foundation is to give the next child and family hope. When McKenna
was diagnosed, funding for research into this disease was almost non-existent. It is because of
family foundations like ours that progress is being made. We collaborate with other foundations
to coordinate funding, and it is our hope that all of us working together will eventually be able to
piece together a multi-pronged approach to treatment that will, at the least, allow the child to live
with this as a chronic disease.
There are still about 300 children in North America dying every year because of this
disease. The only ways to stop all these deaths from happening is by spreading awareness
about DIPG and/or donating to help expand on the research. No more children should die
because of this. Its time to do something. The future of our children should not rest on the
shoulders of families and friends who have lost their beloved children, nor on the kindness of
strangers who feel their pain. We need our leaders to understand that the future success of our
nation depends on their willingness to invest in the health and well-being of our children now
before it becomes too late.
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University School of Medicine. "Diffuse Intrinsic Pontine Glioma: Clinical Features and Ongoing

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2.

"What I Learned From My Daughter's DIPG Diagnosis | St. Baldrick's Blog | Childhood Cancer Stories &
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3.

Mwmosier, and Jenny Mosier. "Current Research - Michael Mosier Defeat DIPG Foundation."Michael
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4.

"COVER." The Connor Man Foundation. N.p., n.d. Web. 09 Dec. 2016.

5.

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Optional - Greco Roman Bouzakis. N.p., n.d. Web. 09 Dec. 2016.

6.

"Mackys Story." McKennaClaire Foundation Mackys Story Comments. N.p., n.d. Web. 09 Dec. 2016.

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"Brain Tumor Center." Brain Tumor Center | Treatment Options. N.p., n.d. Web. 09 Dec. 2016.