Never Forget

September 11th, 2001 We were like everyone else--maybe more aware because we were not at work--glued to the television, watching planes hit one then the other tower of the WTC in New York City. It was a shocking event and all Americans remember what they were doing that day--the similar day for me was Kennedy's assasination, but I remember it because cartoons were cancelled the day after he was shot and that was what my 4 year old self was struck by. In addition to what everyone was feeling, I was also watching my youngest son get his last dose of chemotherapy. He had been diagnosed with a malignant brain tumor 15 months before, and had undergone surgery, radiation, followed by a grueling year of chemotherapy. I was, and remain, grateful for the medical care he received as well as the research that went on before his diagnosis to give him the chance at living beyond 5 years old, but it was the hardest thing that I have ever done. The terrosit attacks on our country cut short any sort of celebration that was planned to mark the momentous day, but in some ways that turned out to be fitting. When treatment ended so too ended the prolonged periods of compromised immunity, bloow transfusions, deadly infections, and prolonged hours in the hospital, but it began what every family who has had a family member survive cancer--the waiting period. The time is fraught with anxiety, and almost nobody gets it. The general public thinks the hard part is over, and it is true that the physically grueling part is (hopefully) behind you--but the emotionally draining part continues. So today we celebrate the 23 year anniversary of a successful end of cancer treatment.

The Surrogate Decision Maker

This is one of the last pictures I have of my youngest son before we all knew that he had a brain tumor.  It was taken in the summer of 2000 in a place that he loved, where his spirit ran free, as you can plainly see.

I just came back from a meeting of the Children's Oncology Group, where I get to lend my expertise to a group of people who are collectively responsible for the research that saved my son's life.  It is often rewarding, but not always.  Sometimes is is emotional and sometimes it is just hard to be back in that place where I feel the devastation. Things are never ever going to be the way they once were and while that has been true for many years, it can still pack a punch.  Having to make decisions for someone that you love is no picnic.  The theory is that the family makes the decision that works best for them, and that parents are the best people to do it, but it is a lot of responsibility.  And no fun at all.  Even in retrospect.

We are the lucky ones.  His treatment worked, he has grown into his 20's, and he is able to go to college.  It is complicated, no question about it, but let's face it, this is the new paradise.  But some weeks it is hard not to feel sad. 

Your Child in the Hospital by Nancy Keene

I am the parent of a childhood cancer survivor and a physician.  I have logged many an hour in the hospital both as a professional and as a parent.  You would think that with all that schooling and on the job experience that being a parent of a hospitalized child would be a relative cake walk compared to the hospital naive adult.  It turns out that is basically untrue.  The only thing that being a doctor helps with is understanding the lingo and knowing your way to the cafeteria.  The physical terrain is entirely familiar, but the emotional terrain is new, scary, and filled with land mines.

That is where this book comes in.  It calmly, carefully, and lovingly takes parents through the entire experience of having a child in the hospital.  There is some excellent and highly reproduced research that shows that when under stress patients only take in about 10% of what is said to them.  Add the stress of a child being ill enough to require round the clock monitoring and having to juggle caring for siblings and what to do about work, and it is not hard to feel completely out of control.  When my son was first diagnosed I laughed out loud when someone told me to take it one day at a time. I could not for the life of me manage more than 15 minutes at a time.  I would spend 15 minutes with him, 15 minutes walking, and 15 minutes crying.  Wash, rinse, repeat.  It was a week before I could manage anything better than that.

This book can save your sanity.  It helps with every facet of the hospital experience.  It is readable.  The advice is practical, and it comes from parents who have been there.  This is wisdom that health care professionals lack, but every parent of a hospitalized child needs.  It tells you how to get through it and how to make it bearable.  It will brighten your day when you didn't think that was possible.  

Childhood Cancer Deserves a Better Spokesperson

Charles Hemenway, MD, PhD (who speaks, by the way, not like the majority of pediatric oncologists that I have met) wrote a review of the movie "The Fault in Our Stars, based on the book by John Green about two characters with childhood cancer.  While he acknowledges that a work of fiction does not have to be accurate, what he goes on to say denegrates the cancer experience of all children who have undergone treatment, regardless of their outcome.

The most outrageous thing he says is that dying from a childhood cancer is not common.   Yes, getting cancer is rare for children, but once you have it, dying is not all that rare.  As a physician, a 30% mortality is nothing to minimize, and as a parent that number is absolutely heartbreaking.   These are children, after all, who have not yet had a chance to experience the things that bring joy into many of our lives, including the experience of falling in love.  The question he should have answered is "Does this happen?" and the answer is that it most certainly does--children with cancer are frequently hospitalized and attend cancer related events together, and they have many opportunites to meet each other, to fall in love with each other, and to know children who have died.  That is a reality he has apparently failed to appreciate in his years of caring for his patients. 

Next on my list of complaints is the use of the word 'cure', because for the vast majority of survivors of child hood cancer, they have significant health and psychiatric effects from their cancer experience.  In the June 2013 issue of JAMA the first article to prospectively evaluate the long term effects of cancer treatment noted: At age 45 years, the estimated cumulative prevalence of any chronic health condition was 95.5% and 80.5% for a serious/disabling or life-threatening chronic condition for adult survivors of childhood cancer.  That means almost everyone has problems from their treatment.

Finally there is his denial of the emotional trauma of cancer and the effects it has on families.  That is not as inexcusable as dismissing the children who die, but it is a close second, and it neglects the literature on the subject.  I am not saying that cancer is necessarily a different experience than other life threatening illnesses.  It is, however, life threatening, and that trauma ripples out across a family, and remains there over decades.  Cancer is no walk in the park, no matter what age you are.

I know this rant is long, but I want to close with how much I loved John Green's book, and his depiction of the emotional roller coaster that happens with serious illness and at the end of life. Don't pay attention to the nay sayers, the  joy that can be found for dying teens in his book is a ray of hope to be hung onto.  He brought childhood cancer to the attention of many and contributed to dimishing ignorance.  Which is more than can be said for Dr. Hemenway's reveiw.

University of Iowa Dance Marathon 19

The art of charity is a good thing to learn.  The earlier you learn it the better, and the more you exercise it the better.

I am personally invested in the University of Iowa's Dance Marathon mission, which is childhood cancer and all things related to it, that I sometimes forget that there is a broader message to be learned by the thousands of dancers who participate each year.  They have the opportunity to do two things--they are giving of themselves for the benefit of others, which is a good lesson to experience, even if you don't learn much from it.  The other is that they acknowledge that bad things happen to people, some of them children.  They get a chance to talk to families of children with cancer and hear what their experience with illness and trouble has been like.

Pictured here are two of this year's dancers.  On the right is my youngest son, himself a childhood cancer survivor.  This year is his 13th Dance Marathon as a survivor, but it is his first year as a dancer.  He raised a reasonable amount of money and he usually stays up all night anyway, so I don't think the experience of dancing will have the impact that it does for many participants.  On the right is my daughter in law--she has danced before, and she has a long standing relationship not just with her husband, but with the whole family, so the impact is not so great for her either.

There are many college students who have not had a personal brush with serious illness.  You can't learn in 24 hours what that is like, but it at least opens your eyes.  Then there is the work that the students who get involved at the leadership level do--they really work year round on the effort to not just raise and distribute money for the greater good.  They are also exposed to what it is like to be a child in the hospital, what that is like for families, and I think you can't help but come away from that experience a better person.  It is true altruism--you get as much as you give.

Childhood Cancer Awareness Month 2012

September is Childhood Cancer Awareness Month, and it is also the anniversary of the end of chemotherapy for my childhood cancer survivor--he got his last dose of chemotherapy on September 11, 2001, literally as the World Trade Center collapsed in New York City. Before I had a cause to champion, something that was much closer to me personally than my other causes, like Recycle, Reuse, Reduce or Renewable Energy--things that are still near and dear to me, but are born out of wanting to do the right thing, and the passion of youth rather than first hand pain, I didn't realize the process of getting a month 'named'. Now I do. Here is the proclamation by the President of the United States: Every year, thousands of children across America are diagnosed with cancer an often life threatening illness that remains the leading cause of death by disease for children under the age of 15. The causes of pediatric cancer are still largely unknown, and though new discoveries are resulting in new treatments, this heartbreaking disease continues to scar families and communities in ways that may never fully heal. This month, we remember the young lives taken too soon, stand with the families facing childhood cancer today, and rededicate ourselves to combating this terrible illness. While much remains to be done, our Nation has come far in the fight to understand, treat, and control childhood cancer. Thanks to ongoing advances in research and treatment, the 5 year survival rate for all childhood cancers has climbed from less than 50 percent to 80 percent over the past several decades. Researchers around the world continue to pioneer new therapies and explore the root causes of the disease, driving progress that could reveal cures or improved outcomes for patients. But despite the gains we have made, help still does not come soon enough for many of our sons and daughters, and too many families suffer pain and devastating loss. My Administration will continue to support families battling pediatric cancer and work to ease the burdens they face. Under the Affordable Care Act, insurance companies can no longer deny health coverage to children because of pre existing conditions, including cancer, nor can they drop coverage because a child is diagnosed with cancer. The law also bans insurers from placing a lifetime dollar limit on the amount of coverage they provide, giving families peace of mind that their coverage will be there when they need it most. And as we work to ensure all Americans have access to affordable health care, my Administration will continue to invest in the cutting edge cancer research that paves the way for tomorrow's breakthroughs. This month, we pay tribute to the families, friends, professionals, and communities who lend their strength to children fighting pediatric cancer. May their courage and commitment continue to move us toward new cures, healthier outcomes, and a brighter future for America's youth. NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2012 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer. IN WITNESS WHEREOF, I have hereunto set my hand this thirty first day of August, in the year of our Lord two thousand twelve, and of the Independence of the United States of America the two hundred and thirty-seventh. BARACK OBAMA

50/50 (2011)

This movie is billed as a comedy, and there are definitely laugh out loud moments, all of them attributable to Seth Rogan--no surprise there. But it is essentially a very serious story told by a man who faced his own mortality in his mid-20's and retained a sense of humor about the ordeal. Adam (Joseph Gordon-Levitt) is a writer for Seattle public radio. He has some nagging back pain, which he seeks care for and finds out that he has a neuro-fibroma-sarcoma-schwannoma. Not only is it a mouthful to say, no one knows what it means, but when he looks it up on the internet, he finds out that at best his chances are 50:50. His girlfriend is initially supportive, but a few too many nights of vomiting after chemo, and she is sleeping with someone else. She stays out of pity and guilt, and when Adam's best friend Kyle reveals her true colors, he kicks her out. She did get him a rescued greyhound, which was a good move, because the dog is definitely a comfort to him as he slogs through chemo--which doesn't work, and he needs to have surgery as his last chance at cure. Throughout the experience he is in therapy--with Katherine (Anna Kendrick), who he quickly susses out to be a rank amateur, and gets her to admit that he is her third patient ever. She makes every mistake i the book--including getting personally involved with him--so not a good example of therapy and what it can do, but a good source of hope for Adam. The mom is Angelica Houston and she is not a particularly sympathetic character here, but as the parent of a childhood cancer survivor, I did feel her pain. There were several tear jerking moments, but I have reason to be hit hard by them--others might sail right through them unscathed, but this is about the most uplifting movie about cancer that you could ever see.

It was 11 Years Ago Today

I love this photo design project that Lisette Gruelke did with a photo she took of Ethan and a poem he wrote.  It was when he was 11, and today it has been 11 years since his medulloblastoma diagnosis.
You may be able to lower your odds of bad events occurring to you, but you cannot eliminate them, and so it is what it is often.  No going backwards, no 'what if's".  So as we continue into the second decade post-cancer, ot would be nice to look forward more than we look backward.  Easier said than done, I am afraid.

One piece of making lemonade out of lemons for me has been a small non-profit that my friend Nancy and I have to publish four books on how to cope with childhood cancer and survivorship (http://childhoodcancerguides.org/). Major pediatric treatment centers have long purchased our books for newly diagnosed families, but not everyone is treated in such a setting, and as the information related to challenges faced by childhood cancer survivors related to their treatment increase, we hope that the books can be more generally available.  Our first attempt at disseminating this information toa wider audience began with getting a table at the American Library Association's annual meeting, and between ourselves and three of our children, we spread to word to anyone who would listen.  And it felt good.  We heard from all sorts of people, some of whom had very sad stories to tell, but it was really heartwarming to hear that we had helped them.  In a perfect world, no one would have to walk in the shoes that we have walked in, but second best is helping those who follow with information and hope that it is survivable.

And Then There Were None

September 11, 2001. A day we had been waiting for and dreading at the same time had finally arrived. Our up close and intimate relationship with childhood cancer was about to take a turn for the better. After 15 months in active treatment, Ethan would get his very last dose of chemotherapy, and he would enter what is called the 'surveillance' phase of his illness--the period of time that follows active treatment, where we watch for a return of his cancer. Where we look for something we hope never to find.
In his case, the stakes were high. There was not a treatment regimen for relapse that worked very well, so no 'standard treatment' option. That is bad news for kids who need a second chance, so we were left not only with waiting and watching, but also knowing that Ethan's best shot at living to adulthood had already happened. As a physician, I knew his fix was in, but as his mother, ending treatment also meant that we stopped actively doing anything about that, and I had very mixed feelings.
He was, as always, happily propped up in his bed as the cytoxan coursed through his IV, watching Mulan for the dozenth time and loving it just as much as he always did.

While Ethan was in one bed, my husband and I were in the empty bed next to his, watching what everyone across the world watched unfold that morning. First the plane hitting the World Trade Center, watching CNN to learn more about it. A plane hit a building? How could that have happened? And then the other tower getting hit--No, that could not be a coincidence, what was going on? And so on. The terror, the destruction, the disbelief, the loss of life, we watched it all unfold.
The nurses on the pediatric oncology floor dutifully presented Ethan with a cake that afternoon, and clapped when he left, bravely putting his important milestone ahead of all the fears that abounded that day. But even now, nine years later, it is hard to face the anniversary--and even now, I do not know how much of it is what happened to my country that day and how much of it is being emotionally unraveled by what had appened to us.

University of Iowa Dance Marathon

The 16th University of Iowa Dance marathon weekend, and our family's 8th Dance Marathon, is upon us. Sigh. On the upside, this is an incredible fundraising machine. There is the event itself, which is a twenty-four hour extravaganza of college students, childhood cancer survivors, and their families, all trying to put their best foot forward in the fight against something awful. Almost better than that is the group of college kids who do service projects at the Iowa Children's Hospital throughout the year, all in the name of Dance marathon, which provides what money has trouble buying, which is enthusiastic youth for the inpatient unit. Ethan was hospitalized at Boston Children's Hospital a couple years ago for neurosurgery to remove a radiation-related problem, and he commented on how much more poorly equipped the pediatirc unit was in every way compared to the amenities at the Iowa Children's Hospital. His hypothesis was that this was a public institution whereas the Iowa Children's Hospital was a private one--actually, the opposite is true, and in great part, the luxury he noticed and benefited from was provided by Dance Marathon dollars and volunteerism.


The sadness stems from the very fact that we are a Dance Marathon family. That we have a dog in the fight against childhood cancer. Luckily, the sadness I have around this event is not shared by my family. Not at all. They commune with their fellow childhood cancer survivor and their sibling friends, Best Buy provides an incredible game room, local food puurveyors provide snacks and meals, and it is an all out party for them. It is also a chance to commune with those who know what life threatening illness can do to a family, and celebrate that what they have at the end of it all. Not all bad. There is a little good as well.
This year, I have a dancer! Abe is dancing, and will be the first Kline boy to do so. He has done an excellent fund raising job, and is still accepting support, should you be so moved: http://www.kidsmiracles.org/abekline
Go Abe!

A Christmas Tale

This movie covers the emotional territory that I was looking for in My Sister's Keeper. And it is really not a Christmas Tale at all. It is a dysfunctional family tale that takes place at Christmas time. The story starts decades before, with a family of four, with one on the way: a mother, a father, and two children, a boy and a girl. The boy, Joseph, develops leukemia and he needs a bone marrow transplant, but alas, none of the family is compatible. So the hopes and fears of the family focus on the unborn child, a boy, Henri. But alas, Henri is not compatible either. Joseph gets sicker and sicker still, then dies. Baby Henri goes from savior to scapegoat, shunned by his mother almost as soon as he entered the world. One additional child is born after Joseph's death, and he goes on to fill the family 'sick' role.

Fast forward to the present. Henri has been banned at family gatherings after repeated bad behavior, but a new crisis has arisen. His mother, Junon Vuillard (flawlessly acted by Catherine Deneuve) has a blood disease for which she requires a bone marrow transplant. All relatives get tested to see who might be compatable. Lo and behold, while she does not like Henri and makes no pains to hide her dispassion, he and the son of her daughter are the best match. So the daughter seeks redemption for her lack of compatability to Joseph through her son. Henri, who has lived the life of the damned, cannot play the role of savior with any sort of elan, though he takes several stabs at it. It is an homage to the reverberations of trauma across generations.

My Sister's Keeper

I felt that I needed to see this movie. I have a childhood cancer survivor, and when we were in the midst of our 15 months of surgery, followed by radiation and then chemotherapy, I was intensively involved in the community of parents whose child has cancer. I met a woman there whose eldest son had a third relapse of his leukemia. None of her other children were compatible bone marrow donors for him, and she openly considered the option that is the basis for this movie--to choose genetically compatible fertilized eggs and select to have a child who can be a donor for your cancer child. Before I had a child with cancer, I would have found the concept repugnant, and even though life was far from normal at that point, I could still remember the person who would shudder at the thought. But a small part of me saw that it would be a big battle for me to retain perspective if my child needed something we couldn't offer him. We did avoid donating blood to him, having a close family friend be his designated donor, so that if in the future he needed an organ we would all be eligible donors, so we have faced difficult choices and painful realities.
But surprise, surprise. The movie was not really all about the emotional experience of a child who has been conceived to be a donor for her sibling. Abigail Breslin does an amazing job of depicting the "it is what it is" experience that the donor child is relegated to. The movie is instead more about a parent who cannot face her child's death. The mother in this story is so far into denial that she is planning to have her healthy daughter donate a kidney to her dying daughter, when everyone but her knows it is futile. And the only ones trying to stop her are her children. Her cancer kid is ready to die, but doesn't know how to break it to her mother. Sobering. I have seen people go this route, so I have thought about this, but I have seen some parents do an amazing job of bringing their dying children home and making the most of their time left. I hope my life doesn't take that path, but if it does, please let me be merciful.
Did any of this make the movie easier to watch? No, it did not. My second son came home while I was watching it, tears streaming down my face. His immediate response was of concern--but I assured him, it was the movie. "I am never watching that", he said. "I lived it. That is enough."

Childhood Cancer Guides

I just got back from Seattle, where we had our last board meeting of the 2009 year for the non-profit I am on the board of. It is very emotional, because the reason I am involved with Childhood Cancer Guides is that I have a child who had and survived childhood cancer. It would of course be worse if I had a child who had not survived, but that is hard to imagine. So it is a labor of relief rather than a labor of love. Relief that I had them when I was going through my son's treatment, that there were people who had managed chemotherapy for over a year and come out of it with not just their sanity but also good humor. The stories I gathered nine years ago were full of cold hard realities, but also hopes, solutions for the inevitable bumps in the road, and dreams for a future. They taught me how to negotiate the path I was dealt rather than the path I would choose. In other words, they did not offer false hope, but real hope. Obtainable hope. It might be easier to leave the experience behind, but I can't. One of the reasons to continue with it is to try to contribute, to offer someone else a life line. That's what these books were for me, and long may they live.