Guest Blog – Kristen: Until there’s a reason

*****I have had this blog for awhile. I have been saving it. I think because its just simply so powerful to me. It embodies the biggest message I am trying to get people to really allow to absorb into them. 

Don’t wait .. get involved now. All in. Both feet. And be brave. Get your loved ones to jump in with you. Because you truly never know what tomorrow will bring.

For me the title of this guest blog says it all. ******

Until there’s a….reason

I have read Jennifer’s story almost from the beginning.  I do not remember exactly how I stumbled across Libby’s page, but I found myself anxiously awaiting the next post to see how Jennifer was doing, always hoping for good news.  I was so devastated when I read that Jennifer had moved to Heaven.  Libby’s powerful words were so personal and raw, I felt like I was there with them.  It felt like I hurt alongside Libby, Tony, Jonathan, Nicholas and Charlotte.  I too am a mother and I could not imagine losing my baby (I say baby, but he is almost 13.  He will always be MY baby).

I continued to read and pray.  I wanted this family to find peace, to be able to keep moving forward.  Learning that Libby was expecting another baby was so joyous and again I checked the blog often to see how things were going and waiting to hear about the gift that Jennifer had sent from Heaven.  It was Bridgette!

As much as I was moved by Libby’s words and felt a connection to Libby and her family, I was able to stay on the sidelines.  My son was good, heathy and thriving.  It was easy to be content just reading about the Kranz family and then close the webpage knowing that my family was safe.  I didn’t need to worry about cancer.  My biggest worry was how to financially take care of my son as a single mother in this crazy expensive area.

But he was ok, I was ok, we were OK.  Sure, cancer had made its way into my family, but it was always the older people, my grandfather or grandmother.   I made financial contributions when I was able to St. Jude’s, UCSF and other cancer organizations.

That was good enough right?  I did my part. Wrong, it wasn’t enough.

Drake and his mama
Drake and his Mama

On March 29th of this year the world as I knew it changed.  My 8 year old nephew, Drake, was diagnosed with Medulloblastoma.  My family was no longer safe.  I watched as this sweet, Lego loving, chocolate eating boy underwent very long BRAIN surgery to remove about 90% of the tumor that had invaded his body.  I watched as he has had almost 30 radiation treatments.  Seven rounds of chemotherapy are next.

He is kicking ass but he shouldn’t have to.  He should be excited that it is summer and planning play dates with friends instead of radiation treatments.  I have watched my amazing sister, Kathy, step into a role that she never wanted.   She has bravely assumed this role, no questions asked; Drake is the number one priority.   Kathy, her husband Scott, and Drake should be taking day trips and enjoying the months before third grade, but instead they are planning for hospital stays.

THIS IS NOT FAIR AND IS NOT ACCEPTABLE.   This is not how Drake’s childhood was supposed to be.  I should not have had to tell my son, Elijah, that his cousin has cancer.  The devastation and fear in his face and hearing his sobs when I told him completely broke my heart.  He too is a rock star; he recently shaved his head to be like Drake and is ready and willing to do anything for his cousin.

Kathy, my hero, and I
Kathy, my hero, and I

Suddenly, I am no longer content to just sit on the sidelines.  Our kids deserve so much more.  I am very embarrassed by my lack of involvement until my family was directly affected.  So many people have stepped up since the diagnosis.  Offers of help and money have flowed in.  In a world where we see so many negative things, it was uplifting to see others, many of them complete strangers, step in to help my family.  It still brings me to tears.

Drake and Elijah in 2013
Drake and Elijah in 2013
Drake and Elijah June 2016
Drake and Elijah June 2016

I am at a loss as to why pediatric is so underfunded.  We fight so hard for many other things related to our kids.  Why not cancer?

36 kids a day are diagnosed (that is over 2,880 kids since Drake’s diagnosis—more than Elijah’s whole elementary school AND middle school!) and 7 die each day (over 560 kids since Drake’s diagnosis) yet only 4% of funding goes to them.

How is that possible??  We shouldn’t wait until we have a personal reason to start doing something.  These kids belong to all of us. Unravel is doing amazing work and I am eager to help in any way that I can.  I am now ALL IN.  Will you join me?

Until there’s a cure….

3 Responses to “Guest Blog – Kristen: Until there’s a reason”

  1. A great guest blog! I too met a family that had a son battle and lose a war with neuroblastoma and it moved me to action… Because donating money wasn’t enough, donating blood, volunteering at a special house for pediatric cancer patients, fluttering, prayer chains, making pillowcases for pediatric cancer kids, and most importantly talking continously to anyone and everyone I know or meet about the lack of funding is a daily mission I couldn’t bare to avoid any longer. I have been taken to my knees so many times for a child fighting DIPG… How could I as a mother and grandmother not know such a malady exists… Once you know it’s impossible to sit idle. EVERY CHILD DESERVES OUR BEST EFFORT to gain more funding, research, better treatments and to find a cure. Of all the organizations I’ve found in my quest for knowledge on pediatric cancer… Unravel is one of the Best!!

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