Collaborative Corner

“This Is Us” by the Kyle Daniel Kerpan Foundation

Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors.  If you would like to share your story as a guest blogger, please email communications@cbttc.org

By Joan Kerpan, Kyle’s Mom & Founder, Kyle Daniel Kerpan Foundation

This is us…

I started to write this blog this evening…I struggled with the right words, so this is a mixture of new and old original entries of the writings I have done over the many years of my brain tumor journey…it is shown here as it was originally written…untouched…unfixed…

As I watched the recent episode of This is Us when Jack died, there were many poignant lines but the one that struck at my heart was Rebecca when she arrived home after Jack had died and she told Miquel to be strong

… “I have to go into that house and tell my kids something that will ruin their lives forever”…flashback to the morning that Kyle died. He died at the hospital very early in the morning, as my husband and I drove up to the house I knew I had to go into that house and tell my daughter Tessa, Kyle’s twin that he had died. I remember walking up the steps and opening her bedroom door but the rest I have no memory of other than to know that I told her and yes it did ruin her life forever. How could it not? This is us at the end of our journey.

Kyle was just two and a half years old when he got sick…his safe and sweet little childhood gone forever…this is us then as it all began.

They took Kyle from the little wagon and handed me his blanket which now was tainted forever with all the vomiting that he had done. They placed him in a crib with big steel bars and so began our new world, there were doctors and nurses flying everywhere, there were tubes there were beeps there was Kyle still sleeping…I had to call Allen, he was home with Tess, Oh God, what do I say…..where is a phone..Kyle does not have diabetes, he has a tumor in his head, I remember that now, that word,”brain tumor” had not entered our world yet…he came and he was dressed like he was meeting with the highest of highest, he was ready to face these doctors…….I was so cold, it was summer somehow shorts and a T shirt with nerves about to pop did not cut it, they offered me a yellow nurses’s gown, I remember putting it on and stuffing my hands into one pocket and putting Kyle’s baby safely in the other, my hands were like ice, I stood over Kyle and a baby in the crib next to him had a lullaby playing, I wanted him to be home in his crib listening to his lullaby…..God what are we doing here…it is the middle of the night and these bright lights shining on him, shining on us, we need to be alone with all of this……

I had to leave, I can’t do this, this can’t be real…..I walked to a quiet place free of the all the noises and stress and I just stood there and took deep breaths and tried to stop shaking, there were no tears yet, just trying to tell my body to go on…………I came back, we need to relieve the pressure with a temporary shunt, we are trying to get in touch with the on call Attending….he is out to dinner…..we will watch Kyle very closely and we will wait…..would you like some cookies and tea…….no I can’t eat, still no attending but there is a resident neurosurgeon mentoring Kyle……what’s happening…it is a seizure….we will put him on Dilantin, we can’t get in touch with the Attending the resident will do the temporary shunt….he begins right in front of us to drill a small hole in the side of Kyle’s head…he tells us he is going to do it and we, I know now being in shock stand there and begin to watch….begin to cry….we are whisked away……..no, I have to be with Kyle………..the pressure is relieved, kyle begins to come around…..there is a moment of calm in our new horrible world……there is a rocking chair to sit in and I finally sit down……..the nurse is changing his diaper, suddenly my baby is now in the hands of total strangers, they let me hold him…be careful of the tubes……..the next step is unknown, it is now some time during the night of this painstaking day……..I take Kyle’s blanket and I wash it in a sink, he needs his blankie…….we dry it in a blanket warmer I give him his baby…….his sweet little life forever changed…..the brain tumor beast has entered the room………..

And in  between there were so many fears, emotions, disappointments, fun times, sad times…always searching…always hoping…this is us as we fought the good fight as they say.

And as you dare to travel on without them…written four years after Kyle died…

When I really miss Kyle as I have been doing a lot lately I come here to my safeplace…where I can say how I really feel…where I know my friends are who will listen…where I have come to for so long now…when I was shoveling snow today I thought back to Kyle’s radiation…it was this time…oh my God…four years ago…how could that be…off we went each day in the sub freezing cold…we got there each day no matter what…we followed all the rules…we did everything we were told to do…fearful if we didn’t …now I don’t know of what…I lived each day…each time that that door would close with an unimaginable hope that he would somehow be cured…that his brain and his spine would somehow be cleared of the beast that lived within them…it was that hope that carried us back and forth each day… I can almost define his life as before radiation and after…two distinct beginnings and two distinct endings…I think for him it was always the same…he just went to each new step…fearless and forever trusting of the outcome…sometimes I wonder if he is mad at me now…for with that trust came no belief for him and perhaps for me either that his tumor would ever take him away…I’m sure he somehow knew…he had heard it…he knew that kids had died…I saw his wheelchair folded up in the garage as I was bringing in the shovel…and for that brief moment I felt myself saying…Ky, I’m so sorry I couldn’t save you…I felt angry…I wanted to come in from the cold and see him off for a snow day just like everybody else…but just that folded up chair with no one in it…I could still see him in it…always smiling…always telling me that it was OK about his legs…they would get better…I always told him…sweetie they may not…and somehow he was OK with that too…there are many children with that same beast within them now…for some the beast rests…for some it is again waking up…their parents like me…forever moving on to that next step…I am left now with that same unimaginable hope for them…I know in my heart that Kyle could never be mad I think it is just me being mad for him…and for all these kids…this is us in the days and the weeks after Kyle…

And this is me now continuing that unimaginable hope that the CBTTC WILL save our kids…

This is us never ever giving that hope up…

 

For additional information about the Kyle Daniel Kerpan Foundation, visit http://www.kylespeace.orgemail kerpana@verizon.net or connect through social media on Facebook

 

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