So it has been quite sometime since my last blog…I love to write, but to be honest- I am not skilled enough, nor have I learned to share my heart on paper without hedging at the thought of the unknown.. what people might think…I am a work in progress. It is however therapeutic…it soothes my own soul to get things down on paper- I think I am funny so I make myself laugh, it feels great to laugh especially at ones self. I try daily to do ridiculous things to make myself and my children laugh, I am blessed to have a wife who still thinks I am amusing and has patience when I cross the line of funny and annoying…(this happens more frequently than I will probably admit). This isn’t that kind of post however……My beautiful 6yr old princess is fighting the battle of her young life and its the most heart wrenching, terrifying, and often helpless feeling imaginable. If you know us, you will know that Keren and I have a big faith in our God- our faith has been tested the past 7 months, but through it we have grown stronger not weaker. It has been difficult- I attempt full transparency when I write- so please know our faith isn’t built on circumstance, but on a God whose promises are still true. Daily I battle doubt, fear, and the questions of an unknown future- but we trust EVERYTHING is made perfect in its time.
Last October Kiara started having headaches, severe headaches….we took her to the ER and she was given IV’s and blood tests which disclosed nothing. On Halloween she struggled to keep her balance when she was out and about trick or treating- the next day we took her in and discovered she had a golfball size tumor at the base of her brain stem. On November 4th she had surgery to remove the tumor which was discovered to be cancerous, and 10 days later we discovered the cancer had metastasized and spread aggressively to her spine…the punches just kept coming. In addition to the cancer diagnosis(officially Medulloblastoma) Kiara developed a serious case of Posterior Fossa Syndrome following her brain surgery. She went from an active 6yr old who did ballet, soccer, taekwondo, loved running (she actually participated in our run club), and just doing what 6yr old kids do; to having almost no motor skills in the span of 8hrs (length of her surgery). Kiara didn’t talk from November 4th 2014 until January 31, 2015- it was the longest, hardest three months of my life. We were blessed to get accepted into a clinical trial for treatment at St. Jude in Memphis, TN. This has been our “home” since the Sunday before Thanksgiving of 2014. We spent a month in Baltimore at Kennedy Krieger after 6 weeks of radiation treatment at St. Jude. At Kennedy Krieger Kiara had intensive inpatient rehab, this is where she was first able to hold her head up on her own, sit up, start completing basic tasks painting and drawing, etc… and this is where she regained her speech.
Fast forward to today- 7 long months into this process which has felt like the longest and at the same time, shortest 7 months of my life. Keren and I have learned to administer medications, flush double lumen hickman lines, re-insert a feeding tube, basic speech; occupational; and physical therapy. We have become professional barf bag responders- all of this way past any capacity we could have imagined for ourselves…Kiara had scans last week which showed “stable” at the tumor site (basically no sign of tumor regrowth) her lumbar puncture came back negative (no cancer cells) and the spine looks clear on the MRI. All of this is praiseworthy news, a deep exhale for parents looking to get on the other side with their princess….
We have seen and experienced so many miracles and divine connections during this time- I heard it once said that “our praise is never richer, than when it is pressed down and costly” this is true- I praise God for walking us through step by step always bridging the gap between what we can handle and that space He had had to carry us over. I have grown to despise the sayings: “God never gives you more than you can handle” False- He gives us so much more, it allows us to recognize our need for Him…and my least favorite “God only gives His strongest battles to His toughest warriors” you cannot convince me that God gave my princess cancer…that He looked down from above and decided she could handle it…don’t try- it won’t work…I do know that Romans 8:28 is a verse we hold on to- “…all things work together for good to those who love God…” We believe He is using Kiara to tell a wonderful story…but we refuse to believe that He caused this.
Even with a strong faith, I wish I could say doubt never creeps in…but that isn’t the truth; my thought life can be punishing…there is still such a long way to go. Parents of children with cancer have to make the most difficult decisions- the medicine that is used to save Kiara’s life has the potential for crippling side effects- in fact we were told regarding the radiation treatment- it is not a matter of will she get side effects or not, but how severe will they be…we make decisions on care praying that 10, 20, 30 yrs down the road Keren and I can look Kiara in the eyes and honestly tell her we did everything in our power to do….this weight doesn’t allow for much peace or rest. Kiara is still learning to crawl, walk, write, read, so many things that we took for granted before. Her chemo treatment finishes in September but the long road ahead is daunting…everyday we see parents return to St Jude with their children whose cancer has returned- I would be lying if I said these fears didn’t creep in often…
So often we get the compliments of being strong parents through this- I am the farthest from strong…Keren is a rock, but I feel so inadequate to lead through this. The burdens get heavy and to be honest it is so difficult to unload because few people really understand what we are going through….Some days I am so angry…watching Kiara suffer with no one to take it out on…the daily rollercoaster is difficult to ride- emotions wanting to take the wheel, fighting to make sound decisions when the physical and emotional exhaustion has taken its toll…
We have been supported through this by the best families, friends, strangers, people have come out of the woodwork to love us. That has helped more than anyone could ever know. The text messages of support, the cards, the giving, the phone calls…the community of support we have has done so much- we are blessed. If you know someone who has cancer- don’t ask what to do- just do something. We are so blessed to be surrounded by friends and family who just “do”…it makes all the difference.
I don’t know what the point of this post is….words on a screen out into the googleweb for who knows to read. I feel better, maybe thats the point…sometimes I just need to write it all down- it helps gain perspective and I hope it doesn’t come off as complaining…
If you would like to follow Kiara’s fight we keep a Facebook page updated for her: Prayers for Warrior Princess Kiara please follow along. And if you pray- we ask that you join us in believing for full healing and restoration for Kiara..she also has a big brother Jameson, and little sister Kylie who will gladly take some prayers as well.
Love “The Grindrod 5”