Kyla Rae's Story: When Hope Was Lost

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.

Kyla Rae with Mom and Dad

Kyla Rae with Mom and Dad

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.

Dancing Kyla

Dancing Kyla

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.  

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