Category: Guest Bloggers

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 Anita Wagner

Ryan Dustin Wagner was diagnosed with lymphoma on September 29, 2010.  Exactly 10 months later to the day he would be gone. He no longer lives in this house on Robison Lane, but I feel him everywhere. He lives in our hearts now. I watched my beautiful radiant shinning energetic loving boy live a beautiful life, then I watched Ryan wither and fade away, then I watched Ryan die.

Ryan did well on the chemotherapy regimen for a while, but it didn’t take long to stop working and the giant tumor in his chest was re-growing through the chemotherapy. Sometimes I think we were doomed from the start.

A bone marrow transplant was to take place soon. Ryan’s brother was a perfect 8 out of 8 bone marrow match! Bridge chemotherapy was needed until we could get the tumor under control, but Ryan almost died from the  it. He had a seizure and could no longer be given the main component of the bridge chemo called ICE. We had to try a modified version, it was our only option and we were still hopeful.

We would literally go from packing to fly to California for our bone marrow transplant to save him to being told to stop packing, he wasn’t going to make it. The bone marrow transplant was off the table, there were no further treatments for Ryan, he was going to die.

Just like that, all the hope fading and almost gone, but I wouldn’t let go, and Ryan wasn’t ready to go either. I could see it in his eyes, that spark.  His will to live was still there. We had to try something. We had to fight. We found a clinical trial at the City of Hope in California. We were air evacuated on a medical flight from Oahu to City of Hope. We would be there six very long weeks trying to save Ryan.

We tried three different chemotherapy regimens there. None of it was working. Ryan had these pleural infusions the entire time he was there. So he had two chest tubes inserted in his chest which drained into two large containers. I measured that fluid everyday hour by hour in hopes it would slow down, in hopes it would stop, but it didn’t.

Ryan would be intubated two times at the City of Hope in order to save him. Twice was enough and I could not allow him to be intubated again. A third time I believe would have killed him. We tried and we tried to save him. We held on to the hope that one of these chemotherapy drugs was going to be the one.

One night Ryan seemed to be breathing very heavy, it was labored. I was up sitting beside him, holding his hand. It was dark in the room except for the lights from the machines that pump his meds and antibiotics and nourishment.  With all the lines plugged into him, he looked like a tangled mess.  He was breathing hard and sweating and he said to me “I feel like I am in a Jacuzzi.” I hold his hand and think this is it, he’s going to die right now and I feel so sick that I am just going to let my baby die here, I feel so hopeless. Ryan made it through that night but in the morning I realize something. We can’t let him die here. Not in the hospital. It is time to go home.

I call my sons pediatric oncologist from Hawaii. He had us all on a medical flight home that evening under the terms that I was accepting hospice care and ending treatment. They said Ryan probably would not make the flight home, but we had to try. I signed a Do Not Resuscitate (DNR) order, and it would be a long five and a half hour flight back to Hawaii.

Ryan would make it through the flight. When we brought Ryan home to Hawaii, he seemed happier, more alert, more alive. He could no longer walk, and he didn’t look so good, but he was feeling better I think to just be home. The doctors gave him two weeks to live. We took Ryan to see a beautiful sunset at the beach one night, He wanted to go to the Japanese Buddhist temple with koi ponds that he use to love going to, so we took him. We did what we could with Ryan to keep him happy. Inside though, it felt like we were all dying.

Ryan would die exactly two weeks after we brought him back from California in my arms at home in Hawaii. We sat out on our patio with him, and I talked to him and I told him somehow in a trembling voice, “We are so proud of you.  You have been so strong and I know you are tired Ryan, you can go now.  I will always love you! We will always love you! You will always be with us Ryan, always!”  We cried, and there were horrible screams that came from Ryan’s then nine year old brother, Cameron, my middle son. He screamed like he was on fire! Screamed like his baby brother was dying “Ryan don’t go! Ryan come back!”

The screams would come from me days later and they haven’t really stopped.

I use to scream so loud and cry that my throat would become raw, so sore until I couldn’t scream anymore. Crushing pounding waves of grief knock me down flat on my face sometimes. I still struggle with accepting that Ryan is gone. I still scream sometimes. I still see him running on his beach, I still hear his little voice laughing. I know I will always feel sorrow.

Sometimes I want to fast forward time so I can see my baby boy again, but I remind myself of all the things I would no longer get to do when I die. I will no longer get to live for Ryan when I die, and then I take a deep breath and try and be brave and just get through the days.

We laugh, we cry, we hurt immensely for what we lost. We have sorrow but we have joy that we had Ryan. He is our light now and forever. We have the hope that our children will have beautiful lives and somehow they will use the past to guide them. I tell them to live for Ryan now, he will be in our hearts forever.

On the night Ryan died, I told my son that was screaming, “Cameron he is gone now.”  He screamed back at me, “You are wrong,  Mommy! He will always be with me, he will always be with me!”  Cameron was right.  Ryan will always be with us. We miss you baby boy more than all the grains of sand in all the beaches of the world, more than all the stars in the universe, to the moon and back, times infinity! We will see you again Ryan, someday, over that rainbow.

Ryan Dustin Wagner Feb5th, 2005~July29th,2011

Favorite song -Eminem, Not Afraid. Favorite color – orange. Favorite food – homemade pizzas, tacos, bananas, honey buns. Favorite games -Angry Birds, Zombie Farm , and Monopoly.

We fund a music therapy program here in Hawaii for children with cancer called Ryan’s Light.  Please read more about the foundation and Ryan.

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.

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 Rachel Keesey

October 12, 2012.  This is the day that my now twelve year old daughter, Maya Elisabeth, was diagnosed with cancer.  High Risk Pre-B Cell Acute Lymphoblastic Leukemia to be exact.  I felt as though the world had stopped turning.  My sweet, active, social butterfly of a girl had turned into a shadow of herself seemingly overnight and the beast of cancer had entered my family’s life.  No one can prepare you for this nightmare.  Most of us never believe or understand that it can happen to absolutely anyone, until it does and it happens to your child.

My daughter was living the life of a sixth grader.  She was loving school, spending time with her friends, joining school activities and participating in volleyball and pommies.  Her carefree existence stopped abruptly, and whether or not it will ever fully return is not a question I can answer.

Life as you know it comes to screeching halt with a diagnosis of cancer.  You and your family are thrust into a world of new vocabulary, new people and places, vast amounts of information and endless worries that are unfamiliar to you.  Over the last ten months, I have often looked around and thought to myself that I just don’t recognize the life that I am living.  And I had no idea that there was so much waiting to be done in my lifetime.

This entire journey began for us with blood test results that we waited 18 hours for.  I somehow knew in my gut what that phone conversation with the doctor would be, but even looking back now, it all still seems so unreal to me.   Leukemia is aggressive and they begin treating it immediately, but it is an extremely long process with specifics that you cannot imagine.

Over the course of the last ten months, we have watched Maya go through unimaginable experiences that no child should have to experience.  Her bravery and ability to find the good has been astounding.  We have spent countless hours waiting for results from blood tests, from spinal taps, and from bone marrow aspirations.  I cannot begin to describe to you the special kind of hell that waiting for results that will tell you if it is likely that your child will live or die provides.

We have had five such occasions to deal with the intense hours between a procedure and learning the outcome.  Cleaning and listening to my child quote inappropriate lines from a popular Youtube video through belly-laughs are my top picks for ways to pass the time. I will always be tremendously thankful for everyone who tried to make those hours easier on us, as well as for Maya’s oncologist who fast-tracked the pathology results from her last bone marrow aspiration when we finally had something to celebrate.

When Maya’s chemotherapy treatments began, I spent a lot of time waiting and watching for side effects to start.  The doctors and nurses can give you an idea of what to expect, but we quickly found that truly every child reacts differently and there are many little quirks and unexpected “surprises” in every new phase of treatment.

The first month of extremely intense treatment, we spent a lot of time at home, each of us just trying to get through the day the best we could.  At some point, my initial state of shock wore off and I began my quest to interrupt the waiting by helping Maya continue to living life.   It became clear to me that although she has cancer, this is still her life and she deserves to live it and live it fully.  So although there are still all kinds of waiting–for fevers, for anti-nausea drugs to kick in, for mouth sores to erupt and then to go away, for her hair to fall out and then for it to grow back, for the next phase of treatment to begin, and for traffic every time we drive into Chicago for treatment–at least we are doing something to fill that time meaningfully and with so many loved ones joining us along the way.

Maya has done a lot of living in the last ten months.  She has done more living in between her treatments than any of us would have believed possible.  Some of it is the life she would have lived without cancer like going to school, hanging out with her friends, taking trips to Door County and dancing.  Some of it is the life that she is living because she has cancer, like speaking on Fox Chicago news about her diagnosis, raising awareness and money for St. Baldrick’s, supporting Cal’s Angel’s wish organization, attending a week at camp for children with cancer, spending tons of time in Chicago and making a new close friend with brain cancer.  Either way, we have embraced it all and we are busy creating memories and enjoying life together instead of sitting around and waiting.

I would like to tell you that Maya’s treatment is almost over, but we have at least another year and a half left if all goes as planned.  However, Maya is looking forward to being on a less intense treatment schedule for her seventh grade school year.  Her pommie season has started and she is out there dancing up a storm despite the physical challenges she deals with as a result of her treatment.  She has long-term goals for her future to attend college and work in the fashion industry or medical profession, and she is always brainstorming new ways in which she can give back to the “cancer community.”

Maya has developed a tremendous sense of empathy for other children and families going through the nightmare of cancer, even while she is still enduring it herself.  She is often more worried about how we are doing than she is about herself.  She has taught not just our family, but our friends and our community many valuable lessons about the precious nature of life.  We are so very proud of her.

We have found that not only does the world keep turning when a child you love has cancer, but life continues in a way in which you feel the passing of every minute. You recognize that how you choose to spend each of those minutes and who you choose to spend each of those minutes with matters more than anything.

Maya is doing well currently, but relapse is always an unspoken fear and something we are waiting on. We are also waiting for the day that treatment is over and for the day that we can breathe a little easier because enough years have passed to declare our girl “cured.”  Raising awareness for the lack of funding for pediatric cancer research has become something I am very passionate about.  No child and no family should have to experience this.

It is a long road with no guarantees and because of that, or maybe in spite of that, we will continue to live our lives with purpose, with joy and with hope every single day, no matter what we are waiting for.

Maya’s family supports three different charities that have helped them during her treatment.  One is Cal‘s All Star Angel Foundation (do you remember reading Cal’s Story earlier this month?), another is St. Baldrick’s, the number one private funder of pediatric cancer research in America, and finally, One Step Camp for children with cancer.  

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.

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 Rebecca Silton

When I first found out I was pregnant, I was working as a postdoctoral fellow for the neuropsychological consultation service at Seattle Children’s Hospital. We worked closely with kids who were diagnosed with brain tumors to help evaluate changes in cognitive function related to tumor growth, chemotherapy, radiation, and related surgical procedures (biopsy, resection, shunt placement and revisions, etc.).  We attended brain tumor rounds: the meeting where the most challenging cases were discussed by the brilliant medical team. My supervising neuropsychologist kindly told me that I could skip attending rounds while I was pregnant.

I did not realize it at the time, but I was clearly flirting with fate when I told him that learning about fatally ill children did not bother me. And so, I continued to attend brain tumor rounds, gaining an invaluable education about intractable pediatric brain and spinal cord tumors. I still carried with me a sense of my own idealism and lacked a sense of my own mortality, which also transferred to the baby in my uterus. I felt untouchable and unfazed.

When I was about six months pregnant, my husband’s grandfather passed away. Someone reminded me of their superstitious belief that pregnant women should not attend funerals.  Being extremely fond of my husband’s grandfather, I had no plans of missing the funeral because of silly superstitious beliefs. Plus, I was still doing headstands in yoga despite being quite pregnant. I was untouchable.

We moved to Chicago and I was teaching a graduate course on neuropsychology.  I was scheduled to lecture on pediatric brain tumors the week that our 10-month-old son was diagnosed with an inoperable, irremovable, infiltrative spinal cord tumor (diffuse fibrillary astrocytoma). My armor shattered and I have been vulnerable and exposed since then.

While my son carries an optimistic prognosis, there is still a lot of medical uncertainty intertwined with his prognosis, and there is no magic bullet cure for his spinal cord tumor. Frequently feeling psychologically undressed and vulnerable, I have latched on to superstitious and magical beliefs: no scheduling routine MRIs on Friday the 13th or September 11th for that matter either.  If the chemo protocol is working, then we go at the same time and same day for treatment, no exceptions.

When Eli was at risk for needing a blood transfusion due to low hemoglobin counts, I donated blood to Red Cross for good karma. I have small veins and the Red Cross attendants did not want to take my blood. I refused to leave until enough blood was drawn for donation. My karma plan worked. Eli’s hemoglobin counts rebounded, and has not yet needed a blood transfusion.  Since it’s hard for me to donate blood regularly, my husband has continued to do this.  While he has his own aversion to needles, DJ has veins the size of the Mississippi.  Also, his own transformation at the hands of Eli’s tumor has made DJ less queasy with all things medical.

In the face of medical uncertainty, I have learned to live in the present, day-by-day, moment-by-moment. Lacking a developed prefrontal cortex, it turns out that toddlers are little zen masters who only care about the present moment in which they are living, so I do my best to follow Eli’s lead. When my mind rambles too far ahead, I do my best to direct it back to the present and to simply focus on enjoying the moment and creating memories for the future. This slight of mind does not decrease the daily awareness of the closeness of mortality for all of us, but allows me to live in peace with this awareness.

Grateful thanks to Rebecca for sharing Eli’s story.  Eli is treated at the same hospital that treated Donna.  His family supports a few different charities.  One is the Young Associates Board — they host the annual run where Team Dancing Donna wears those famous tutus and donate all their proceeds to the pediatric brain tumor program at Lurie Children’s Hospital of Chicago.  Another is Project Violet that encourages individual to “adopt a drug,” a new approach to funding research for children’s brain tumors, that are often ignored by pharma companies.  Finally, the American Red Cross, as so many children treated for cancer require frequent blood transfusions.   

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.