What a week. Highs, lows, and everything in between. If you follow me or Team Danica on Facebook, you know that we lost a friend earlier last week. Beautiful little Reagan was one of Dani’s playmates at the hospital. She relapsed from AML, had to have a bone marrow transplant, and went on to develop complications and infection. This was the first “close” childhood cancer loss we’ve experienced. And it really rocked me.
Because what you also know if you follow us, is that Dani has done remarkably well throughout her treatment. Despite her high-risk, more-intense protocol, she’s really thrived. I’m sure that’s due to a combination of things…some we’ve had control over, and some we haven’t. But regardless of why…and regardless of how our lives have changed because of this thing called “childhood cancer”, we’ve really settled into it. So sometimes I forget the serious weight of what we’re dealing with. We go through our days and of course watch her nutrition, are careful about her exposure to illness, administer her meds, head in for chemo treatments and procedures from time to time…but she also runs, jumps, eats, sleeps, plays, dances, throws fits…all like any other 2 year old. It’s just become our new normal. And as the last year has worn on and I’ve continue my research, learned how to help her, felt empowered by the education I’ve found, and watched her do so well…the intense fear and anxiety I started this journey with has really dissipated.
But then, a little over a week ago, I got the news. Reagan was not doing well. I reached out to her momma…followed Facebook…stayed in touch with the rest of the “cancer mom club” for updates…prayed my ass off…hugged my babies as much as possible…counted my blessings…had uncontrollable bouts of tears…and time seemed to sort of stand still. Because as much as my heart was breaking for Reagan and her family…of course, I couldn’t help but find myself overcome with fear once again.
Reagan passed peacefully from the arms of her parents to the arms of her Father last Monday. The news of her passing was hard…but it was most certainly not lost on me that I was the lucky one…I was the one who still had my daughter with me.
Regardless, it was a reality check that we’re not out of the woods and that despite how well Dani has done or how “normal” life feels right now, this is still a big damn deal. And I need to treat it as such.
The statistics of pediatric cancer are staggering and they’re not getting better.
(*graphic courtesy of Max Love Project)
There are several schools of thought on why things are the way they are. Why diagnosis rates continue to rise, why we’re seemingly not able to get ahead of this but just keep having to put a “band-aid” (i.e., chemo, radiation, surgeries) on the problem, why many hospitals seem uninterested in supporting integrative and alternative therapies. I’m not an expert in the field and certainly don’t feel qualified to comment on that in any helpful or meaningful way. So in the meantime, I’m doing what I can to try and make it better.
For me, that’s been working with my dear friend, Season Johnson on the KICKcancER Movement. Many of you have followed our stories, our friendship, and the development of this Movement…and for that, I’m so grateful. The way God brought the two of us together…and reinforced to us time and time and time again that THIS is what we’re supposed to be doing…it’s honestly one of the most clearly divine interventions of my life.
The amount of crazy…and I mean CRAZY similarities between us is absolutely insane (leukemia diagnoses, adoptions, exact same wedding date…honestly, it’s a long and almost erie list). And don’t even get me started on our personalities. This is a woman who seriously gets me. We’ve laughed together, cried together, prayed together, laughed MORE together. She’s the kind of person who can literally finish my sentences. God totally did this.
But the real beauty is not in our similarities…it’s in our differences. We come from two different schools of thought on many things and yet want nothing more than to learn from each other. Neither of us “has to be right”. It’s about moving forward and working together to find common threads of truth to help support our own kids and any others we can as well. For me, it’s been a true example of cancer mommas sticking together, respecting one another, learning from each other, and helping each other navigate this nasty disease, regardless of any differences we entered into this with. It’s a beautiful friendship and I’m so grateful for it. And our goal, our FIGHT is not just about our own kids anymore…
Because while our kids seem to be doing so, so well, we know many others who are not. And while cure rates have improved and many of these little fighters WILL survive, conventional treatment as it stands has proven to bring with it awful long-term effects. Things like higher rates of secondary cancers, early onset osteoporosis, brain damage, learning disabilities, loss of hearing and/or sight, seizures, heart disease, infertility, permanent hair loss…and the list goes on and on. It is our goal at KICKcancER to help parents feel empowered to have some control in what feels like such a powerless situation.
Does that mean that eating healthier, learning about ways to detox, and incorporating holistic therapies will have the exact same effect on each child? No. Does it mean we have the answer to “what caused this”? Of course not. Does it mean we’ll put an end to childhood cancer? I sooooooo wish.
But we have to do something. And what I CAN tell you is that the things we’ve done with our own children, and what many, many, many others have also implemented with their own kids…when used alongside conventional cancer treatments…has shown only to improve that quality of life for these children. So our perspective is…why not try? Why not research? Why not make an effort to share what we know, what’s worked for our kids, and spread the word to help other cancer parents who are in the same quest to know better…and do better?
So for those of you who are so kind to keep asking what you can do…for us, for the cause, for other children who aren’t handling treatment as well as Dani or Kicker…besides lifting them all in prayer, I’d ask you to also consider sharing our Movement. From what we are learning, parents want, need, CRAVE this information and are searching for ways to navigate all of this so they can help their children are in the fight of their lives. And that’s what KICKcancER is all about.
I normally post my blogs on Friday mornings but this past Friday…it was just too much. I had been working on this post for days but just didn’t feel I had the emotional energy to do little Reagan justice. That morning, I hugged my kids a little tighter, climbed into the car and headed to Reagan’s funeral. It was one of the most beautiful events I’ve ever had the honor of being a part of. What a celebration of life. Watching her pictures scroll across the screen, listening to several relatives and both of her adoring parents share their memories, hearing the sounds of some of my favorite Christian artists, feeling the Holy Spirit permeate my heart in a way I’ve rarely felt before. This.little.girl.was.loved.
It took the majority of the weekend to really let the experience really sink in…remembering how it felt to hug her brave momma, to sit in that sanctuary with tears rolling down my cheeks, hold my husband’s hand in complete silence for most of the hour and a half drive home, just lost in thought and prayer.
I prayed for many things, but most of all that we are are able to learn from these precious little children who endure so much so that others may not have to suffer in the future. And THAT is what drives me to keep on going, helps me focus on HOPE, and once again replaces my fear mentality…with a fight mentality.
So I’m FIGHTING…and I beg you to do the same.
I beg you to fight for Dani…and for Reagan…and for Kicker…
…and for Nora, for Ava, for Emma, for Delainey, for Paige, for Adalyn, for Dorian, for Avery, for Laken, for Morgan, for Kylie, for Zein, for Dawson, for Mason, for Beckett, for Annika, for Cecilia, for Max, for Connor, for Ana, for Kyle, for Ben, for Asher, for Zach, for Sammie, for Brian, for Sam, for Sophie, for Valiente, for Hannah, for Carly…
…and for ALL the other cancer kid warriors I haven’t had the pleasure of meeting.
It’s up to US to help make a difference in the world of childhood cancer…and we’d be HONORED if you’d join us in the fight.
For more on what we do at KICKcancER or to donate to these amazing families, please visit our website at www.kickcancermovement.com.