What I Want You to Know is a series of
reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series, click here. Today’s guest posts is by Audra, Max’s Momma.
reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series, click here. Today’s guest posts is by Audra, Max’s Momma.
August 5th, 2011 is a painful
anniversary. On that day our four-year-old son, Max, was diagnosed with
brain cancer. My family was thrown into a new world. In this story I want to
convey how much alike we are, you and I. No matter who you are, we likely have
something in common simply because we read this amazing blog, we care about
issues, diverse perspectives, and parenting. And before that day in August
two years ago I knew as little about childhood cancers as everyone else.
anniversary. On that day our four-year-old son, Max, was diagnosed with
brain cancer. My family was thrown into a new world. In this story I want to
convey how much alike we are, you and I. No matter who you are, we likely have
something in common simply because we read this amazing blog, we care about
issues, diverse perspectives, and parenting. And before that day in August
two years ago I knew as little about childhood cancers as everyone else.
Childhood cancers. You’re probably thinking
that this is an extremely rare occurrence, something akin to a lethal lightning
strike. But one in 330 American kids are diagnosed prior to their nineteenth
birthday, so it’s likely that a student in your child’s elementary school will
be diagnosed. 46 kids each school day are diagnosed with cancer in the U.S. It’s
rare, but not rare enough.
that this is an extremely rare occurrence, something akin to a lethal lightning
strike. But one in 330 American kids are diagnosed prior to their nineteenth
birthday, so it’s likely that a student in your child’s elementary school will
be diagnosed. 46 kids each school day are diagnosed with cancer in the U.S. It’s
rare, but not rare enough.
This is one reason why it catches everyone
off-guard. We know it could happen, but probably won’t. Well, here’s how it
happened to us. Max started to regress a bit physically at the beginning
of the summer of 2011. He lost balance slightly and soon became fearful of
stairs. Prior to this he had a number of episodes of early morning headaches
and vomiting, but that was all explained away by a bad sinus infection or a
virus going around. Eventually that summer Max started skinning the same
knee over and over again. He was falling more, holding onto things, not making
it to the bathroom on time, and much more. He was rushed to the doctor from
school because he appeared “drunk” and couldn’t walk without falling
over. After some challenges and a scary incident where he couldn’t get up, we
got Max in for an MRI. We planned on seeing a movie afterward. I was sure
he had a sinus infection and maybe, at the most extreme end of the realm of
possibilities, he needed surgery for some related complications.
off-guard. We know it could happen, but probably won’t. Well, here’s how it
happened to us. Max started to regress a bit physically at the beginning
of the summer of 2011. He lost balance slightly and soon became fearful of
stairs. Prior to this he had a number of episodes of early morning headaches
and vomiting, but that was all explained away by a bad sinus infection or a
virus going around. Eventually that summer Max started skinning the same
knee over and over again. He was falling more, holding onto things, not making
it to the bathroom on time, and much more. He was rushed to the doctor from
school because he appeared “drunk” and couldn’t walk without falling
over. After some challenges and a scary incident where he couldn’t get up, we
got Max in for an MRI. We planned on seeing a movie afterward. I was sure
he had a sinus infection and maybe, at the most extreme end of the realm of
possibilities, he needed surgery for some related complications.
I remember being told I could come back to the
recovery room. Max was still coming out of anesthesia. The anesthesiologist
asked me to step aside into another room. He asked me to sit down. Sit down?
That kind of sit down? The bad kind? The kind of request that I’ve only seen in
movies or ER-style television shows. The doctor looked worried, all of the
nurses had gathered outside of Max’s room. I was told that Max has significant
water on his brain and had to be rushed to another hospital immediately.
Surgery was immanent to relieve the pressure on my baby’s brain. The condition
is called hydrocephalus and, at that point for Max, was life-threatening.
recovery room. Max was still coming out of anesthesia. The anesthesiologist
asked me to step aside into another room. He asked me to sit down. Sit down?
That kind of sit down? The bad kind? The kind of request that I’ve only seen in
movies or ER-style television shows. The doctor looked worried, all of the
nurses had gathered outside of Max’s room. I was told that Max has significant
water on his brain and had to be rushed to another hospital immediately.
Surgery was immanent to relieve the pressure on my baby’s brain. The condition
is called hydrocephalus and, at that point for Max, was life-threatening.
I sobbed silently and, if you’ve ever been in
that unfortunate position, you know how hard it is to suck it all up and put a
smile on your face. I walked into the room where Max was coming to, holding
back tears, shaking. “Don’t let him see your pain,” I reminded
myself. I was shaking harder. I couldn’t see straight to text my husband
who was teaching at the time. How do I do this? I stroked Max’s hair, kissed
his sweet forehead, told him it’ll be okay, even though I had no idea what was
happening. The pediatrician was on the phone. He told me it’s a brain tumor. I
ask, “is it going to be okay?” He responded that he didn’t know.
Honest, at least. I signed papers and more papers. We were escorted into the
ambulance with a chaplain on hand for comfort. Max is still out of it, I
sob quietly up front. I texted my husband after what seems like an eternity of
handling the news alone. He asked me what’s going on I respond with only one
word, “tumor.”
that unfortunate position, you know how hard it is to suck it all up and put a
smile on your face. I walked into the room where Max was coming to, holding
back tears, shaking. “Don’t let him see your pain,” I reminded
myself. I was shaking harder. I couldn’t see straight to text my husband
who was teaching at the time. How do I do this? I stroked Max’s hair, kissed
his sweet forehead, told him it’ll be okay, even though I had no idea what was
happening. The pediatrician was on the phone. He told me it’s a brain tumor. I
ask, “is it going to be okay?” He responded that he didn’t know.
Honest, at least. I signed papers and more papers. We were escorted into the
ambulance with a chaplain on hand for comfort. Max is still out of it, I
sob quietly up front. I texted my husband after what seems like an eternity of
handling the news alone. He asked me what’s going on I respond with only one
word, “tumor.”
We moved from the ambulance to the PICU to
brain surgery immediately in the morning. We spent days with our
intubated son, post-surgery. He then learned to talk, walk, and use his
hands again. We got a crash course in critical care management, our
health care system, and cancer. Max had a direct line port-au-cath
implanted. We started a 1 ½ year chemo protocol three weeks later. People
tried to help, telling us about every option, every alternative clinic they’ve
every heard of. We received all of the forwarded emails about there being
a cure to cancer but the media and government won’t tell us about it (blah
blah). If you can avoid sharing this stuff with cancer families, I recommend
it.
brain surgery immediately in the morning. We spent days with our
intubated son, post-surgery. He then learned to talk, walk, and use his
hands again. We got a crash course in critical care management, our
health care system, and cancer. Max had a direct line port-au-cath
implanted. We started a 1 ½ year chemo protocol three weeks later. People
tried to help, telling us about every option, every alternative clinic they’ve
every heard of. We received all of the forwarded emails about there being
a cure to cancer but the media and government won’t tell us about it (blah
blah). If you can avoid sharing this stuff with cancer families, I recommend
it.
The most striking thing we learned being
confronted head-on (so to speak) with cancer is that cancer is the #1
disease killer of American children. Worldwide, a child is diagnosed with
cancer every three minutes. We had no idea. One in five children diagnosed
in the U.S. die. Half of all children diagnosed worldwide die. Again, no idea.
Childhood cancers have not been
cured. Far from it.
confronted head-on (so to speak) with cancer is that cancer is the #1
disease killer of American children. Worldwide, a child is diagnosed with
cancer every three minutes. We had no idea. One in five children diagnosed
in the U.S. die. Half of all children diagnosed worldwide die. Again, no idea.
Childhood cancers have not been
cured. Far from it.
These diseases are incredibly violent, borne
of our own mutated cells that kills by rendering our internal organs, whichever
are most affected, incapable of sustaining life. Scientists and doctors don’t
actually know what causes kids’ cells to mutate into cancer. That’s not
hyperbole. They literally do not know! We asked, why Max? We were
told that no one knows. Could we have prevented this? We don’t know. Why do we
know so little about the #1 disease killer of our kids? This we know.
of our own mutated cells that kills by rendering our internal organs, whichever
are most affected, incapable of sustaining life. Scientists and doctors don’t
actually know what causes kids’ cells to mutate into cancer. That’s not
hyperbole. They literally do not know! We asked, why Max? We were
told that no one knows. Could we have prevented this? We don’t know. Why do we
know so little about the #1 disease killer of our kids? This we know.
We know so little because we devote the bare
minimum of federal research dollars to childhood cancer research. 98% of the
U.S. National Cancer Institute’s cancer budget goes to adult cancers, leaving
2% for children (and that’s for all 12 forms of childhood cancers). Does it
trickle down, you ask? No, unfortunately we have learned that childhood and
adult cancers are different and, when kids are treated with adult answers, the
results can leave children in bad shape. 3 out of 5 childhood cancer survivors
suffer late-effects of their treatment, which include secondary cancers, learning
delays, organ failure and sterility. I had no idea, until I had to.
minimum of federal research dollars to childhood cancer research. 98% of the
U.S. National Cancer Institute’s cancer budget goes to adult cancers, leaving
2% for children (and that’s for all 12 forms of childhood cancers). Does it
trickle down, you ask? No, unfortunately we have learned that childhood and
adult cancers are different and, when kids are treated with adult answers, the
results can leave children in bad shape. 3 out of 5 childhood cancer survivors
suffer late-effects of their treatment, which include secondary cancers, learning
delays, organ failure and sterility. I had no idea, until I had to.
Here’s where our hope lies: WITH YOU!
Yes, you can help. We cancer-families often feel invisible, cast
away to battle this disease on our own. No one talks about childhood
cancers perhaps because it’s tough to even think about a child suffering from
this disease. We have no major celebrity backing or visibility. It’s
easier for many people to turn away and remain silent, changing the channel
when the small bald headed child asks for support. But at the same time, there
are many who choose to join us. They take our hands and won’t let go. They
stand with us, showing up when we need them the most. And that is precisely
what we need. We need allies who will stand with us.
Yes, you can help. We cancer-families often feel invisible, cast
away to battle this disease on our own. No one talks about childhood
cancers perhaps because it’s tough to even think about a child suffering from
this disease. We have no major celebrity backing or visibility. It’s
easier for many people to turn away and remain silent, changing the channel
when the small bald headed child asks for support. But at the same time, there
are many who choose to join us. They take our hands and won’t let go. They
stand with us, showing up when we need them the most. And that is precisely
what we need. We need allies who will stand with us.
Today, just over two years later, Max has been
off treatment for over eight months. We’ve been attacking this with all we
have: chemotherapy, nutrition, acupuncture, Traditional Chinese Medicine,
physical therapies, and other complementary therapies. We can do this because
we have a community supporting the extra costs, and organizations like Lucy’s Love, Kai’s Village, and Gabe’s Chemo Duck. Because of all this, Max is doing well and
the residual tumor(s) have just now started to progress again, so we enter a
second phase of his battle. You can follow his journey on Facebook. He’ll get this, but science needs to catch
up to ensure that he can win this battle for good. You can help push science
further by advocating and raising money for a great childhood cancer research
organization, like the St. Baldrick’s Foundation, the McKenna Claire Foundation, Max’s Ring of Fire or the Ty Louis Campbell Foundation .
off treatment for over eight months. We’ve been attacking this with all we
have: chemotherapy, nutrition, acupuncture, Traditional Chinese Medicine,
physical therapies, and other complementary therapies. We can do this because
we have a community supporting the extra costs, and organizations like Lucy’s Love, Kai’s Village, and Gabe’s Chemo Duck. Because of all this, Max is doing well and
the residual tumor(s) have just now started to progress again, so we enter a
second phase of his battle. You can follow his journey on Facebook. He’ll get this, but science needs to catch
up to ensure that he can win this battle for good. You can help push science
further by advocating and raising money for a great childhood cancer research
organization, like the St. Baldrick’s Foundation, the McKenna Claire Foundation, Max’s Ring of Fire or the Ty Louis Campbell Foundation .
You are empowered to support hope, today. Max’s
continued healing has been inextricably linked to his access to complementary
therapies, what is called integrative medicine. Without aggressive nutrition
therapy, acupuncture, massage, physical activity, healing narratives, and the
therapeutic resources we mentioned previously we know Max would have endured a
much tougher course of treatment, higher associated risks, as well as earlier
post-surgical cancer progression. To extend these essential healing therapies to
all kids thriving against the odds, Max’s dad and I and a group of wonderful
friends started a nonprofit organization, MaxLove Project, as well as a social entrepreneurship
initiative to support the nonprofit, MaxLove Brand. Please join us on Facebook and learn more about how non-toxic and
natural remedies support children in treatment and beyond. We need help
advocating for integrative protocols for all hospitalized children.
continued healing has been inextricably linked to his access to complementary
therapies, what is called integrative medicine. Without aggressive nutrition
therapy, acupuncture, massage, physical activity, healing narratives, and the
therapeutic resources we mentioned previously we know Max would have endured a
much tougher course of treatment, higher associated risks, as well as earlier
post-surgical cancer progression. To extend these essential healing therapies to
all kids thriving against the odds, Max’s dad and I and a group of wonderful
friends started a nonprofit organization, MaxLove Project, as well as a social entrepreneurship
initiative to support the nonprofit, MaxLove Brand. Please join us on Facebook and learn more about how non-toxic and
natural remedies support children in treatment and beyond. We need help
advocating for integrative protocols for all hospitalized children.
Please be an ally. We need for you to know
that when those water cooler and play date conversations go down, you can help,
your voice matters. Read this post and mention that cancer kills and hurts our
kids. Share on Facebook and Twitter. Raise awareness, one friend at a time. Advocate
for one of the wonderful organizations I mentioned when your PTA send out calls
for service opportunities. Host a neighborhood lemonade stand or a charitable
garage sale. Don’t look away. When you see us, take our hands. When you see a
child facing cancer in your child’s school, be relentless in your support.
Build a community of hope. Together we’ll make a difference. Together we’ll
change the odds for all kids facing life-threatening illness. Love heals.
that when those water cooler and play date conversations go down, you can help,
your voice matters. Read this post and mention that cancer kills and hurts our
kids. Share on Facebook and Twitter. Raise awareness, one friend at a time. Advocate
for one of the wonderful organizations I mentioned when your PTA send out calls
for service opportunities. Host a neighborhood lemonade stand or a charitable
garage sale. Don’t look away. When you see us, take our hands. When you see a
child facing cancer in your child’s school, be relentless in your support.
Build a community of hope. Together we’ll make a difference. Together we’ll
change the odds for all kids facing life-threatening illness. Love heals.
Thanks for your time and opportunity to share
what I’d most like for you to know.
what I’d most like for you to know.
Audra, Max’s Momma
