Category: Childhood Cancer Stories 2013

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 Ellen Ochs Tillem

On Rosh Hashanah [it] will be inscribed and on Yom Kippur [it] will be sealed…Who will live and who will die. Unetanneh Tokef from the High Holy Day Liturgy.

During the fall of 2011, we sat with our daughter between us during the Jewish High Holy Day Services.  We were fresh out of treatment and in the early, halcyon days of remission.  As we sat and recited these words, we were so sure, so full of HOPE that we were among the lucky ones.  As fate would have it, Yom Kippur of that year was also Kyla Rae’s sixteenth birthday.  It seemed as if the stars had aligned to make everything right.  We recited those words with such confidence.

Fast forward six weeks, and our world came tumbling down.

It was the Monday after Thanksgiving.  We were all still living in the realm of HOPE.  We had resumed our annual post-Thanksgiving party which that year also served as a celebration of Kyla Rae’s remission and a thank you to some of the many people who had supported our family during the previous year.  My daughter came to my room after getting dressed for school.  I was stealing a few extra minutes under the blankets before getting up to go to work.  “Mom, I found a lump in my breast while I was getting dressed.”  CRASH!!!

I hopped out of bed and told her to lie down so that I could feel it.  I still remember telling her that it was probably nothing, but it was a LUMP.  I kept reassuring her that I really didn’t think it was anything but that we would call the team as soon as clinic opened and go straight down just to make sure.  I didn’t let her eat breakfast in the hope that we could get an emergency PET scan that day in order to reassure her that all was fine.

We were in the clinic by 10 AM.  The doctor on call reassured us that the location of the lump was a very unlikely sight for reoccurrence but that he felt multiple lumps…in both breasts.  By noon, Kyla Rae was having a PET scan.  “Smart mom,” I heard, “not letting her eat breakfast.”  By 3 PM we were back with the doctor and our favorite nurse practitioner.  The doctor told us that indeed there was something there as well as something in her sacrum, but that it was probably not cancer.  LIAR!!  One look at the tears coming from the eyes of the nurse practitioner told us that this was not true.  We were sent home with the promise that we would hear the next day about scheduling a biopsy to determine what the “lumps” were.

A few hours later I received a call from Kyla Rae’s primary oncologist.  He asked me what we had been told earlier that day.  After relating the conversation that we had with Dr. LIAR, he told me to forget what I had heard.  The cancer was back, there were multiple tumors, and our only option was palliative care.

But wait.  Rhabdo doesn’t show up in the breast.  Isn’t that what Dr. LIAR told us?  Rhabdomysarcoma is a muscle cell tumor.  It can show up any where there are muscle cells I was reminded.  We discussed plans to return to the clinic on Thursday and the call was ended.

By this time, my daughter, my husband and my son (our other daughter had returned to school the previous day believing as we all had, that her sister had beat the monster) had followed me into the living room.  I looked at my daughter and she said to me, “I am going to die, aren’t I.”  No parent should EVER have to hear those words from her daughter let alone have to confirm them.

Five months later on a rainy day in April, we buried our daughter:

Kyla Rae Tillem, Forever Sixteen. Dancing with the Angels.

Update:  Today marks seventeen months since our daughter lost her battle with cancer.  My husband and I have both returned to work full-time.  Our two older children have continued their college studies.  Zara, our oldest daughter will graduate from Syracuse University with a Bachelors of Architecture next June.  She has managed to stay on track despite the loss of her sister/best friend and as she said in her eulogy for Kyla Rae, her future maid of honor.  Our son, Benjamin finished at the local community college in June and has since transferred to the Park School of Communication at Ithaca College.  He has also made connections with people at both NBC and the Office of the Mayor of New York City so that other teenagers with cancer can attend special events.  We couldn’t be prouder of the way these two have managed to continue on despite the loss of their “baby sister.”

My husband and I are now officially empty nesters.  Kyla would have graduated high school this past June and also would have left for college this fall. Somehow this empty nest feels emptier.  There was no freshman orientation, roommate drama or convocation for  us to attend this time around.  Despite all of this, we are making a life for ourselves and trying to live each day in Kyla Rae’s light.  We continue to shed tears and miss her in a way that is beyond description.  Tears continue to flow at the most unexpected and inopportune times, but we made her a promise to find a way to continue on and so each day we try to live up to this promise.  Our other children deserve at least that much from us and so much more.

Kyla Rae was a dedicated ballerina and danced intensively for ten years prior to her cancer diagnosis.  We have established the Kyla Rae Tillem Memorial Dance Scholarship at the Ballet School of Stamford where she danced, so that young dancers that otherwise could not afford to, can take ballet class.  Donations can be made via their website linked above, but please indicate on the donation form that it is for KRT Dance Scholarship.

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 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.