That Time My Daughter Was On Medicaid

Health care.  Unless you live in a cave without wifi, you’ve heard the familiar rumblings of our elected officials holding the fate of every American citizen in their hands while they decide what to do about it.  I have a lot of thoughts about how something that impacts so many could be determined by thirteen white men in DC (and, yes, the fact that they are white men is relevant and worth noting), a lot of thoughts, but instead, I will share the story of my daughter being a Medicaid recipient.

Once upon a time, March 23, 2007 to be precise, my not quite two year old daughter Donna was diagnosed with a brain tumor.  My husband and I both worked at the time, he at a job he had been at for five years and me at a job I had been at for nine years.  I was thrilled to be able to transition to part-time hours after my girl was born and felt lucky most every day.  Our family benefited from generous employer provided benefits.

I needed to exit my position when it became clear that the care our girl would require would prevent me from being available to work on any consistent basis. After diagnosis and her initial surgery to remove the tumor, our girl relapsed six weeks later.  That resulted in another hastily scheduled brain surgery and the need for chemotherapy that would require hospital stays of 3-7 days twice monthy for an unspecified time.  We needed to tighten our belts a bit, but we could and did.

Many cancers are understood adequately enough to follow a treatment protocol.  If you have a boy with leukemia, you know that he will be in treatment for three to three and a half years.  A dear friend who cares for a daughter with a brain tumor learned a couple of years post diagnosis that her girl would need to receive a new regimen of chemotherapy once a week for 52 weeks. Now, none of these protocol are set in stone, as at any time, something could happen that would require changes — the cancer could return, metasticize, infection could set in, the chemo could stop working.

For the cancer my daughter had, papillary meningioma, no such treatment protocol exists.  Not enough research has been done to understand it — actually, nothing more than anecdotal studies have been published about this particular type of brain cancer and no research or funds are devoted to better understanding it.  As the docs explained, that was both good and bad.  Bad because, well, there was no plan, and good because, well, they could try what they had and hope for the best, as nothing out there suggested it would not work.  Donna’s doctors chose hope and we did, too.

Initially, Donna’s cancer responded to treatment incredibly well.  Lesions in her lungs were erased (Donna’s cancer had metasticized) and there was no sign of any returning tumor growth in her brain.  The joy and relief we felt compensated for the days of suffering Donna experienced using a chemo cocktail an oncologist friend described as a “sledgehammer.”

Each cycle required a five day inpatient stay followed by discharge to home followed by the onset of neutropenia followed by a second monthly hospitalization for IV antibiotics to combat any chance of infection setting in and wreaking havoc.  Two weeks of the month were spent inpatient, one week spent post-chemo feeling like hell, and one blessed week a month where we could enjoy relative good health and engage in things two year olds like to do — parks, zoo, playing outside.

We did this for six months, not knowing month to month if we would keep doing it, as we never knew if it would stop working or if it would become too toxic.  After six months it did.  Donna’s kidneys began to fail, hit particularly hard by the chemo.  The treatment team advised she stop the protocol, extract healthy cells via harvest, then have a stem cell transplant (or two, depending on whether or not she survived the first, and no, I am not joking) to provide what they hoped would be the final blow to her cancer.

A stem cell transplant is to chemo what a marathon is to a 5K.

Donna during her stem cell harvest in 10/2007.
Donna during her stem cell harvest in 10/2007.

All of this happened prior to the Affordable Care Act and an Obama presidency.  My husband and I, despite being grateful for the insurance we had, were running a silent tally in our heads.  Each hospital stay came with a mental CA-CHING $ echoing in our heads.  Each home health visit to access her port, each surgery, each pink plastic bowl used to catch toxic vomit  was adding up.  It was a pressure we lived with but didn’t share.  The health of our girl was consuming, so we back-burnered the worry of Donna’s $2 million lifetime insurance cap, but knew we were inching closer to it every day.

In a collective fog, we marched towards Donna’s stem cell transplant, only to come to a screeching halt when it was denied by our insurance carrier. In December of 2007 our family was lucky enough to live in a state and in a time that insurance was mandated for children.  When our employer provided insurance denied the recommended stem cell transplant and then denied our appeal, the hospital suggested we apply for Medicaid for Donna under Illinois’ All Kids program. They walked our upper middle class, naive selves through the process.

Each month a little slip of paper came in the mail that allowed Donna to access her oncologist recommended treatment.  It was her Medicaid slip that held the particular sequence of letters and numbers that acted as a key to her potential health and well being.  It was used exclusively during the time of her stem cell transplant and recovery, as our insurer made clear nothing related to a stem cell transplant would be eligible for coverage.

Donna’s single stem cell transplant cost well over $600K.  We were grateful that Medicaid covered the transplant for a couple of reasons — 1) simply because it would be paid for without us losing our home or financial stability, and 2) because that $600K+ would have taken Donna dangerously close to her $2 million lifetime insurance cap.  The short period that Donna was on Medicaid acted as a reprieve to our worries about Donna maxing out her lifetime insurance cap before reaching the age of three.

I remember the day the Affordable Care Act passed and the day the Supreme Court upheld it.  While it no longer impacted our girl who died before it was passed, I celebrated for the hundreds of children and families I knew who lived with pediatric cancer and its devastating impact, both emotional and financial.  I celebrated that these kids lucky enough to survive their cancer could never, ever again be denied for having had the misfortune of having a pre-existing condition.  I celebrated that they would be allowed to enjoy their parent’s insurance coverage until age 26.  I celebrated that they would be relieved of the burden of a lifetime cap.  These are good, important measures for quality of life that have nothing to do with whether you vote red or blue.

While Vice President Pence extols the virtues of “personal responsibility” and Kellyanne Conway advises people to get a job with employer provided benefits rather than rely on Medicaid, too many Americans know the reality of why that approach to health care does not scratch the surface of reality.  That approach deems to separate the “deserving” poor from the “undeserving” poor.  That approach does not take into account the reality of average Americans living with catastrophic illness, working jobs that do not provide a living wage, let alone health benefits, or the often random nature of illness, unemployment, and falling on hard times.  My upper middle class, white lady, married, respectable, employed self needed and benefited from Medicaid when it covered our daughter after our for profit insurer denied her.

We are at the cusp of moving backwards on health care in America, dangling over a proverbial cliff that will put so many fellow Americans in harm’s way.  Medicaid benefits vulnerable people that you know and love — parents and grandparents in nursing homes, veterans, children, 50% of every baby born here, people living with mental illness, people living with addiction, people living with catastrophic illness not covered by their insurance.  You may never have used Medicaid yourself, but you can never claim you will never need it because, well, life.

Call your senators.  Today.  Now.  You can find their number HERE.  Tell them Donna sent you.

Have You Ever Met a Refugee?

This morning I had the opportunity to drive three little girls to their dance lessons.  They happened to be Syrian refugees who live in my neighborhood. Two of the girls are sisters and while we waited for the third girl to get to the car, they told me their stories, totally unsolicited, and with joy and laughter.

The sisters are in Kindergarten and 4th grade. We giggled that all of our names start with the letters “Sh.”  The 4th grader loves school, but her sister finds it boring and wants to switch to the school her friends go to because it is more fun.  They looked a lot like twins, despite having a few years between them.

The younger sister told me they have lived in Chicago for two years and before that, they lived in five other countries after leaving Syria. Their father died when the girls were one and five. They miss him. The older girl, who was four when her dad died does “not really remember him.” They knew that he had eyes that turned green in the sun. They wished their brown eyes did the same.

A few minutes later, the other girl came down with her mom who didn’t speak a lot of English, but gave Chicago a thumbs up. This little girl recently relapsed with cancer.  I wanted to explain to her mother, the woman sitting next to me with the kind face and gentle eyes wearing the hijab, that I understood, that I, too, once mothered a daughter with cancer, but I didn’t. I couldn’t.  Her English was much better than my Arabic, but it still wasn’t enough for us to share such specific intimacies.

I dropped them off at the dance studio where my own daughter danced so many years ago.  Officially, the main studio has been named after our girl, and there is a plaque and photo of Donna above the door as you walk through.  After the girls went in, I pointed to the photo and said, “My daughter,” to the mom I had just met.  She smiled and said, “Oh.”

I left and returned as the class was ending.  The teacher invited me in saying the dancers needed to get used to having an audience. Would I mind watching?  I was honored.

The music started and within moments I felt tears welling up.  There were a dozen dancers, probably eight to ten years old.  Some had blond hair, some had black hair, all were beautiful.  The choreography was gorgeous and involved the dancers huddled together at times, protective and nurturing.  Other times they danced in formation, powerful and graceful.

dancers

These girls, in their pink and purple lycra, were bonded.  It didn’t matter that some have fled war across oceans, or others were born not three miles from where they still lived.  It didn’t matter that some worship in a church and others in a mosque.  None of that mattered to any of them.

As we were leaving, the girls laughing again and holding hands, happy to get outside where they could run along the sidewalk, I noticed another photo of my daughter in the lobby of the studio.  In this one, Donna is bald and concentrating on her dancing, focused.  I pointed again, to my fellow mother and said, “My daughter.”  Again, she smiled.  Did she make the connection?

In the car riding home, the three girls laughing and going in and out of English and Arabic, I asked the mom if she had other children. Two other daughters, she said, one ten and one nine months.  It struck me in that moment that she was the mother of an American citizen. She asked me the same, “You?  How many children?”

Answering this question is complicated on the best of days, but today, with the language barrier and the bond of cancer between us, it was especially hard.  “I have two boys,” I said, “Eight and three years old.”  “And your daughter?,” she asked.  “She died,” I offered, “She is gone.”  I think she got it.  I don’t know.  Does it even matter?

A lot of people want you to believe that we should fear Syrian refugees, that they are somehow a danger to our way of life here in America.  I am not afraid.  I refuse to fear three little girls giggling in my back seat.  I refuse to fear a child that carries a purple backpack with colorful cats on it.  I refuse to fear a nine year old in the midst of a cancer relapse.  I refuse to fear a mother who left her home in search of something better for her children, one of whom is an American citizen.  I refuse to fear another mother who lost her husband in civil war and fled with a young child and infant, hoping for safety and peace.

Fear is a powerful tool.  It can easily be leveraged and manipulated, exploited for political gain.  It is easy to fear that which you don’t know or understand. Today I met four Syrian refugees.  There was nothing fearful about them.  They were lovely and sweet and very much like our own daughters.

Cubs Star Anthony Rizzo Is Already a Champion to Chicago’s Childhood Cancer Community

Tonight, the Chicago Cubs are on the cusp of history — game seven of the World Series.  The pressure could not be more intense, yet there is a joy in the air, a sense of hope, and happy anticipation for some of their most vulnerable fans living with childhood cancer.

Ball player Anthony Rizzo is no stranger to hope.  Diagnosed with Hodgkin’s lymphoma at age 18, the young ballplayer was successfully treated and eventually found his way to Chicago.  Teammate Jon Lester is also a cancer survivor.  Their bond is strong (you can read about it HERE or watch a story about it HERE) and captures a side of these Chicago Cubs that many fans don’t see, but that those in the childhood cancer community are well acquainted with.

A frequent visitor at Lurie Children’s Hospital of Chicago, Anthony Rizzo is a symbol of hope and possibility for children and families coping with a childhood cancer diagnosis.  He visits frequently, spending time with patients, posing for photos, gifting baseball caps and tickets along the way.

For the families and patients who have come to think of Rizzo as one of their own, his support and recognition means the world to them, as they draw on his example of perseverance, coming out the other side, and defying expectations no matter what comes your way.  All important lessons for a child or teen coping with cancer.

A few patients and families treated at Lurie’s for cancer shared their photos and experiences with me.  File these under “inspiration” and enjoy.  And let’s all hope that tomorrow we’ll be flying that W.

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Joe meets Anthony Rizzo

Joe absolutely loves Rizzo. Joe was going through a really tough chemo where he would go weekends at a time with no food … his mouth full of sores and his taste buds shot.  When the cereal RizzOs came out we were in the hospital on one of those endless weekends.  My mother-in-law got Joe a couple boxes of the cereal and brought it to the hospital, and guess what??? He ate a couple bowls of it!!!

He got to meet Rizzo and Joe asked him, “How did you go through chemo while already in the MLB?”  Rizzo told him, “You are great and will overcome.  When you feel okay, get out and play ball, when you don’t, rest.”  Joe took that to heart and always had that in mind.

What Rizzo did for Joe — giving him words of encouragement — had more of an impact that anything we could have imagined. Joe has stayed positive and always looks up to Rizzo.  Flavia, Joe’s mother

 

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Maya and her mom, Rachel, on Anthony Rizzo

I will say it over and over again…Anthony Rizzo is not only a phenomenal ball player, he is an exceptional person. The amount of time, care and financial support he dedicates to children and families with cancer is truly inspiring. Not only have we come into contact with him at Lurie, but he sponsored Maya’s Water Sports camp experience through Children’s Oncology Services this past summer and he has supported events she has been a part of through the Leukemia & Lymphoma Society and Gilda’s Club, he is serious about the work he does in the cancer community and it shows.

Seeing him walk into Maya’s hospital room larger than life with that charming smile was not only a diversion from a rough treatment day or two, but he reminded us to stay hopeful. His visits gave us permission in those moments to believe in a future for Maya. There is no greater currency than hope when going through cancer treatment with your child. Anthony Rizzo is living proof that Maya’s dreams are not over just because she had cancer and that those dreams don’t have to be compromised despite the challenges she has faced as a result of treatment. Watching him play ball during the World Series only reaffirms this for us and I can’t help but think that the pure joy and enthusiasm he exudes is even greater because of his perspective on life. He is so fun to watch and we are all huge fans!

He also gave Maya the opportunity to make a great memory with her grandpa when he gave her tickets to a Cubs game during one of those hospital visits. My dad is a lifelong, diehard Cubs fan and he was able to accompany his granddaughters to their very first Cubs game because of that generous gift. That was an experience that will be treasured forever and it came at a time when making memories was at the forefront of all of our minds. I will always be incredibly grateful for that.  Rachel, Maya’s mom

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Mia and Anthony Rizzo

Anthony Rizzo is not only an incredible sports hero to our family, he is a role model. Great at his craft, yet, even greater as a human being. An inspiration on multiple levels. You can tell where he gets it from when you meet his family. They are kind to no end. Having a child like Mia – fighting cancer – it helps to have motivation, inspiration, and friendship from people like Anthony. You root hard for him on the field and even harder off the field because you know he has been there. Struggled, suffered, and overcame. We love the RIZ. #44  Lisa, Mia’s mother

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Jack with his hero, Anthony Rizzo

There is no more awkward time in this world than middle school. To be diagnosed with cancer and in treatment in middle school? Doubly bad. When every other boy is moving on, growing-up and getting stronger, you are stuck in a miasma of ick. 2 years out of treatment, our now 14 year old knows that he is mentally tougher than other kids his age and that grit sets him apart.  But he struggles to make up for the time lost to sickness, a time where his peers passed him up and passed him by. He focuses on being stronger and rebuilding his health and his mental game. But for the most part the positives are just theory and he wonders if he will ever get all the way back.

And then you walk through the doors on the oncology floor at Lurie Childrens and Anthony Rizzo is there. The living embodiment of all the good that can come from all the bad. The bigger, the stronger, the faster, the better. For a young teenage boy not sure if he will ever catch up with his peers because he “lost” years to sickness and chemo and hospitals and doctors, Anthony Rizzo is the proof. Proof that maybe it is not all just talk trying to make you feel better. It is proof that you can get there. You can catch-up, you can move ahead, you can be better. You are better.

Anthony Rizzo is a reminder that even with the worst possible odds, you can be the best possible version of you. Your had cancer, it is part of you but it does not define you. It might even help make you better than you ever thought you could be. Ann, mother to two sons with childhood cancer

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Kyler and Anthony Rizzo

I recently thought that if Kyler had survived cancer he would grow up to be someone like Anthony Rizzo. Kind, compassionate, caring, and for the cause of helping other kids with cancer, on top of being a great athlete. It made me smile. Thanks be to Rizzo.  Rebecca, Kyler’s mother

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If you would like to support the good work of the Anthony Rizzo Family Foundation, click HERE.