Category: Guest Bloggers

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Wendy Burr

Matthew has Leukemia.

I never thought I could be so matter of fact about something that awful and terrifying. My baby boy, at just 3 years old, has cancer.

What can I say? The first month is crazy scary! You know there’s something wrong. Everyone knows there’s something wrong. His grandparents, his siblings, his teachers. But every mother I’ve talked to says they went from doctor to doctor, and it always seems to take a month from the first weird symptoms to reach a diagnosis. You desperately want that, but you don’t, because what if it’s something awful? Like cancer?

This is an excerpt from the beginning of Matthew’s cancer blog. After more than two years, I now understand that some parents find out much more suddenly and traumatically, but with leukemia, it can take some time. Matthew’s first symptom was night terrors, lasting several months. An infection in his salivary gland then swelled to the size of two golf balls in under twelve hours, and all the lymph nodes in his neck were hard, like marbles.

After a month of doctors, antibiotics, weight loss, paleness, lethargy, fevers, and loss of appetite, those lumps, although smaller, would not go away. Finally, we took him to the ER at the children’s hospital. A Complete Blood Count indicated a problem. They admitted him, and started testing for leukemia. Three days later, they diagnosed Acute Lymphoblastic Leukemia (ALL) with a prognosis of 85-92%. This is about as good as it gets. We are the lucky ones.

Although cancer is awful, for me, it was also sort of a relief. I desperately wanted someone to help him. I’d been watching him die, from a simple infection, and felt so helpless. It wasn’t until weeks later that I fell apart. I’m still trying to put myself back together.

ALL treatment is long. For Matthew, about three and a half years. By the end, it will have been nearly half his life.

The first eight months included five intense phases of treatment. He lost his hair twice, experienced weight gain from steroids, weight loss from chemo, blood transfusions, and was mostly confined to our home due to low immunities. He had to stop preschool, but an amazing teacher came and taught him when he was well enough. She was his light in a dark place.

The remainder of treatment is a maintenance therapy. It’s a weird in-between place. The goal is to suppress the bone marrow, to reset it, in hopes that it will stop making cancerous blood. They check white blood counts monthly to measure success. Levels are high enough that he’s no longer home bound, but low enough that he’s still immune compromised. He can catch anything. Cold and flu season is terrifying.

Blood has a fast life cycle. So for ALL treatment, the first phase, called induction, is designed to kill all the cancer in 28 days. Matthew has been in remission since August 2011. All the illness he’s experienced since then was a result of his treatment, not his cancer. We have a real love/hate relationship with chemo. Everything we do now teaches the bones to make healthy, cancer-free blood. To prevent relapse, because ALL relapse is notoriously hard to cure.

In the 70’s, they stopped treatment after induction, and only 10% of patients survived because pretty much everyone relapsed. They’d kill the cancer in the blood, but the bones would just make more. ALL treatment has come a such a long way. Ten years ago, the survival rate was 50-70%. Today, it’s 80-90% or better. This has all been accomplished with no new drugs, because the drug companies and the government do very little to research childhood cancer. That’s why I feel so passionately about research. Matthew’s excellent prognosis has come from decades of study (one tiny tweak to the protocol at a time), and unimaginable numbers of participating children. Their parents enrolled them in studies knowing it wouldn’t help them, but hoping to improve treatment. What a gut-wrenchingly selfless thing to think about during your child’s terminal illness.

My son is living, breathing proof that it worked. If you’re one of those parents, reading this now, I want to say thank you, from the very depths of my soul, for hoping to make a difference for us. It worked. My son is a vibrant, vital reminder of that gift every day. Thank you. I can never thank you enough.

My life’s trajectory has changed. I’m studying to be a nurse, with the ultimate goal of pediatric oncology. But research remains vital. ALL treatment still isn’t perfect. If you look at the numbers, roughly 3 out of 20 kids don’t make it. Those numbers used to comfort me, until I started watching my friends’ children suffer and die. I’ve seen some good friends bury their bright and shining stars. It breaks me inside a little bit more each time, and then my resolve to act is heightened. It isn’t right.

Because ALL is the most common childhood cancer, and has the best cure rate, it weighs down the numbers, making it seem like all childhood cancers have a good cure rate, and this is simply not true. If you look at them individually, sarcomas, neuroblastoma, brain cancers (and so many more) … these cancers desperately need better treatment! Most have more like 50/50 odds, and some, like DIPG, have no chance of a cure. This is unacceptable. In a society where we claim our children come first, I cannot understand why the disease that kills more children than any other gets so little funding for research. If this ship were sinking, would we just let these little children drown? How come so few people are throwing out a life preserver?

To that end, I raise funds for research with a group of cancer moms in Utah. We walk for CureSearch because it has very little overhead, therefore a high percentage goes to actual research, sent on to Children’s Oncology Group (COG), the uniting research organization for all of North America. Last year, our walk earned $170,000, 100% of which went straight to COG. For more information about this year’s walk on October 5th, visit our website. If you’d like to walk with Matthew’s team, physically or virtually, visit his individual page.

We still have another year to go. Another cold and flu season. Kindergarten. Relapse is the scariest word I know, and it’s most likely to happen during this time. There’s an 8-15% chance, and it would change everything. We put this at the back of our minds, and try to live in the now. Right now, he’s relatively healthy. He’s happy, smart, funny, witty, and so very empathetic. When this year is over, we’ll take some baby steps back into real life. Someday, this will be in the rearview mirror, and Matthew will be a strong, contributing member of society. He’ll never be the same, but in many ways, I believe he’ll be better. Stronger, for what he has endured. More empathetic and kind. It has made him who he is.

“When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history, it becomes more beautiful.”

~ Billie Mobayed

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Stewart Goldman, M.D.

It is hard for me to explain the dread I feel when at a social gathering a stranger asks me, “What do you do?” It is not that I am shy, or ashamed. With every part of my soul, I am proud and honored to be a pediatric neuro-oncologist. I am thankful in ways I cannot adequately express that I was given the opportunity and privilege to  follow this path. So I can’t really articulate why I feel this discomfort.

The usual response received after I state my career  goes one of three ways:

1. “OH, you must be an angel!” Not true, just ask my bride.
2. “My God, that must be tough.  I couldn’t do it — I like children too much to hurt them.” This implies I don’t like children and don’t mind their suffering, which just hurts my feelings, and makes me mad.
3. “That must be so sad, so hard, how do you do it?”

Unfortunately, this last response, which I hear frequently, has a simple answer, but one I cannot, nor do I always want to explain in a social setting.

First of all, let’s state the obvious:  cancer sucks, cancer is unfair, cancer in the brain is wrong, and the devastation it causes is horrific.  Going further, cancer in a child, well, that is the ultimate wrong.

Let’s not forget how wrong brain cancer is in a child. Let us not forget the pain and suffering they experience from their tumors, surgeries, chemo- therapies, and radiation.  Let’s not forgot that we lose way too many of these children, nor the devastation it brings to their parents, siblings, friends and community, or the loss to our world of these special children, whom I believe would make it a better place.

Yet in my daily life, I get to meet wonderful children, who happen to have a brain tumor.  Not people who feel sorry for themselves, but children who want to be normal, play, grow up, and experience the love of their families. I see parents re-prioritize their lives to focus on their family.  In a way, I think in our hectic complicated lives, we all lose at least a little of this focus.

In some strange way, I benefit from this reminder to realign my priorities, as I lose sight all too often. I see siblings, who themselves suffer in so many ways, develop a sensitivity, kindness, maturity  and compassion that goes beyond their chronological age, and an energy they will extend to others for years to come.

In my days, I see the best in people.  Yes, being a pediatric neuro-oncologist is hard.  It is our job to console and support the families and staff and not to fall to pieces ourselves.  There are times when the pain I feel over our inability to cure every child can be overwhelming.  Sometimes the responsibilities feel too much, but the joy to be involved and to feel part of the lives of these children and their families makes any negatives seem trivial.

This career is not difficult, it is a privilege.

Maybe that is why I feel so comfortable around other pediatric oncologists and oncology staff.  They get it; we don’t have to explain it to one another. Once when asked, “ How do you do it?,” I answered that I get more than I give.  This is the truth, but in those social settings, I normaly answer, “ I am a pediatrician.” Maybe not a complete description, yet still true, and then we can move on to the weather.

When Mary Tyler Mom asked me to contribute to her blog, I was not sure what to write about.  She said, “Tell some stories, not facts about childhood cancer, some stories.” So here goes.

• One of my patients was raising cows for a 4H contest.  He named these calves after his medical team. He made a big poster with pictures of the cows with our names under our namesake cow. I was so confident that Dr. Stew was the best and strongest cow.  I hung this poster proudly and called attention to it for everyone to see.  A few months later, the boy came to the hospital all proud and excited.  It turns out Monica, a black and white Holstein (named after his favorite nurse), won the best in show.  When I asked what happened to the cow named Dr. Stew, he just rubbed his stomach and said, “ He was delicious.”
• I am a die hard White Sox fan and had a running ‘Sox versus Cubs’ banter going with one of my patients.  One summer when I was out (with the aid of some accomplices), this patient located my car and address.  While I was away, he decorated my car and home in Cubs paraphernalia.  He denied for 6 months any knowledge of this prank, but  come the next Christmas I was given a present of a picture of him smiling while defacing my car with an “I Love the Cubs” license plate. This picture of him, with his giant beaming smile, remains on my shelf and is truly the only Cubs logo seen within a mile of my possessions.
• During my Oncology fellowship in the late 1980s, I was caring for a 17 year old who was the only child of two holocaust survivors.  His cancer had recurred, and after years of fighting he was now slowly dying. He was a tremendous young man, mature beyond his age.  The kind of young man whose only concern was how his parents would survive without him there to care for them. I trained at a center that had the pediatric hospital connected to the adult hospital. During this time, my own mother was in her terminal phase of breast cancer, and I would spend nights  in her hospital room. One evening, I left her room to go back to check on my patients.  When I went to see this 17 year old, he and his family asked if they could pray for my mother. More than 25 years later, I am still in awe of the depth of kindness and humanity of this family.  How could this young man and his family, despite all the suffering they had seen, still be so giving to others? It is this type of compassion for others I see almost daily in the children and families we are so honored to care for.

Part of my job is to raise awareness of our cause and money for our research.  We even have a Facebook page. One day recently, we featured a picture of a three year old boy, happy and smiling in his hospital bed. This photo, true as it was, stirred deep emotions and even anger for some who know firsthand that childhood cancer is not all smiles.  I was reminded we should not ever, in any way, under emphasize the realities of cancer in children.

Having a brain tumor is not all smiles and fun.  Kids suffer.  Kids receive tremendously difficult treatments.  Kids endure horrific side effects.  Kids feel pain.  Kids die, and their loved ones die a little with them.

The realities of childhood cancer never go away.

My goal is to have these kids live as normal a life as possible, while providing treatment that leaves them with as few lifetime challenges as possible. My goal is a life for these kids, no matter how long or short, that is filled with as many smiles and as much joy as possible.

Despite the pain, these children and families persevere.  I marvel at my families (a little presumptuous on my part, but I do think of them as ‘my families’), how even in the worst of times, even with the loss of a child, they reach out to each other, or create foundations to raise money for research, or serve other families.  They want nothing more than for no other child and family to experience what they have.

This courage and the love of our patients, their families, and communities, motivates our team to push on, to fight harder, to find better answers. We owe that to the children and families we have served, and those we will serve in the future.

One of my instructions was to keep my blog under a 1000 words — guess that didn’t happen.

So maybe if we ever meet at a social gathering and you ask me what I do for a living, you’ll understand why I give you a one word answer, “pediatrician.” Now how ’bout those Cubs?

Dr. Stew was our daughter Donna’s neuro-oncologist at the former Children’s Memorial Hospital, now known as Lurie Children’s Hospital of Chicago.  He said something in the midst of her treatment that really helped pull us though, “Donna may have a brain tumor, but she is not a sick child.”  He was right.  Through his efforts, Donna was able to live her brief life with the best quality we could have hoped for, enabling her to know joy for many of her days.  We are indebted to him and it is not too much of an exaggeration to say I would take a bullet for this man.  He is that important to so many vulnerable children.  We love him dearly.  

You can support his research by making a donation here.  Under “Gift designation” in step 2, please make certain to designate the “Brain Tumor Research Fund.”  It looks a lot like this:

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Shannon Anderson

December 18, 2011 . . . The Bears were playing Seattle.  My husband and I had been gifted tickets to a game and were so excited to be able to share the tickets with one of my husband’s best friends and his wife.  I remember vividly that it was a gorgeous December day . . . bright, sunny and very unusual for Chicago.  I had just begun my Winter Break from teaching sixth grade and I was thrilled about the possibility of spending more time with my two children Leah (6) and James (2).  My husband and I had already decided we would not be traveling over the holiday and would be spending Christmas at home.  I relished of all the things I could do with my two children over the next week that I was off before Christmas.  My husband, a life-long Bears fan, could not have been happier that day.  He was in his glory, as many men in Chicago would be.  In my mind I remember thinking . . . does life really get any better than this?

My question would be answered a lot sooner than I thought and with an answer I never expected.  Later that day my children came home from their grandparent’s house.  Leah’s eye looked funny.  It was slightly droopy and her pupil appeared to be enlarged.  My husband and I called her doctor and were told to bring her in the next day.   After seeing one doctor after another over the next three days we ended up with our daughter in an ER at 2 A.M.  A shaken ER doctor approached us and told us, “She has a mass in her brain.”   What?  Impossible.  Not my child.  I just went to her conference a month ago and found out what a gift she was in the classroom.  This can’t be happening.  The news would only get worse.  After arriving at Children’s Memorial Hospital in Chicago we would learn that not only did Leah have a mass in her brain, but also her chance of survival was virtually impossible.  We were four days from Christmas and looking at a ten percent survival rate for our oldest child.

Leah, an amazingly empathetic girl and out of this world big sister to James, lived for less than a year from that Bears game.  We never spent another Christmas with her.  She endured two brain surgeries, countless MRI’s of the brain and spine, two different chemotherapy treatments, six weeks of radiation, several hospital appointments; ER visits, and was eventually put on a clinical trial.  She did all of this with a grace and style that is hard to even put into words.  She finished kindergarten and even began first grade.  She truly LIVED, even with everything she was going through.

We lost Leah on 12/12/12.  That’s a hard date to forget.  It’s ironic how we (my husband and I) thought at the time that living through her treatment was rough.  Now we KNOW that that time was a drop in the bucket compared to our lives now.  Nothing in this world can compare to the life we live now.  A life without Leah.  Leah died three days after her little brother turned four.  He never even knew it was his birthday.

We have managed to survive one Christmas without Leah.  My husband and I have no other choice; we have to help an innocent four year-old boy navigate a world without his beloved older sister.  Leah is the first thing we think about every morning and the last thing we think about before we go to bed.  As of late, with the beginning of a new school year, my mind has been overwhelmed with thoughts of her.   This school year should have welcomed our Leah into the second grade with her 8th birthday quickly following.  But that is not to be for our family.

I started back to school this month and was having a difficult time doing so.  I found myself thinking about Leah constantly as she loved to come to my school and help me get my classroom ready at the beginning of a new year.  I saw her writing her name on my chalkboard, drawing myself and other colleagues pictures, and forcing James to play school with her.  It was tough.

That same day during a faculty meeting one of my colleagues shared a story with our entire staff.  He read aloud a quote from one of his favorite books.  This is the passage from the book Bird by Bird by Anne Lamott that he read:

“Thirty years ago my older brother, who was ten years old at the time, was trying to get a report written on birds that he’d had three months to write, which was due the next day.  We were out at our family cabin in Bolinas, and he was at the kitchen table close to tears, surrounded by binder paper and pencils and unopened books about birds, immobilized by the hugeness of the task ahead.  Then my father sat down beside him, put his arm around my brother’s shoulder, and said, “Bird by bird, buddy.  Just take it bird by bird.”

That’s it.  Bird by bird, day-by-day, hour-by-hour, sometimes minute-by-minute.  Life without Leah is bird by bird.

We never know what life is going to throw at us.  It is completely unpredictable.  I NEVER would have believed that my seven year-old daughter would be diagnosed with not only a brain tumor, but also one that is inoperable in our day and age.  One where we would be faced with literally no treatment options, but a diagnosis of almost certain death and all we were left with to keep us going for almost a year was hope and hope alone.

Life can and will change in an instant sometimes.  Mine did in December of 2011, along with my husband’s, my son’s, and most importantly, Leah’s.  For the rest of my life, the holidays and special days Leah will never get to attend (Christmas, her birthdays, the first day of school each year) will be hard.  I will get through them bird by bird.

The Anderson family has established a foundation to honor Leah’s memory and help both raise awareness for pediatric cancer and fund research.  You can learn more about the L.E.A. Foundation and the work they do here.  Grateful thanks to Shannon for sharing her daughter’s story today, Leah’s would be/should be 8th birthday.  Kraft och omtanke.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.