Thursday, August 8, 2013

Wondering Why for a Different Reason

It's easy to wonder why Esther had to have cancer...what caused it, what could we have done differently, was it preventable? Why did Esther have to get cancer? Why does any child have to get cancer?

The last week I've been wondering a different why. Esther has done so well. Her treatment has been harsh, her lows have been low, but the cancer has died. Her surgery was far better than expected, she was disease free earlier than many kids, she has remained sweet. She has done well. She just completed her 5th round of antibody therapy.

Esther LOVES to ride her bike and is getting strong enough to do it!


She has been getting stronger and feeling better. She's had a significant amount of skin breakdown from the medicine she takes which has caused continued problems with her broviac site. Lots of tears and pain. We are leaving it mostly open in hopes it will soon heal, but after a quick trip to the clinic today, we decided we'd rather just have it take out. The constant itching and pain from needing to clean it all the time is more than she or I can take. The original goal was to remove both her broviac and port at the same time after her end of treatment scans to save a trip to the operating room, but at this point, it's just not worth it. A few specific things to pray...for no infection to develop before the line comes out, for an opening in the surgeon's schedule soon, and for Esther to remain healthy. Lydia has developed a cold which is okay now. The risk of Esther being sick now is might take her a long time to get over it, but it won't be life threatening. However, you can go under general anesthesia if you're sick, so that could delay the surgery.

Her final round of antibody therapy will be nothing for the next two weeks and then two weeks of oral meds at home. Then sometime in September, after 16 months of cancer fighting days, she will have end of treatment scans. Lord willing there will be no cancer and never again will she spend another day fighting cancer. The doctors are optimistic about her future and that is reassuring, but it's not a guarantee. The statistics of kids who relapse are staggering, more than half of kids with Esther's staging relapse.

A little girl we met at Brent's Place passed away last weekend. She finished her neuroblastoma treatment and had clean scans just a couple months ago, but the cancer came back quickly and horribly aggressive. As I've thought about her parents and brothers, I ache and just want to hold my own children so, so tight. Every moment with each of them is a gift I don't want to take for granted. Her story is different than Esther's and her treatment had many bumps. She didn't respond as quickly, but she was cancer free at the end. Please pray for her family. I haven't asked permission to share her story, so I don't want to post names. God knows, so please pray regardless.

The same day we learned about this little girl's passing, we saw an update on another young man, Justin, we've met along the way. He has been fighting neuroblastoma for seven years and had just learned that his cancer had returned for a sixth time. SIX TIMES! He told his mom he's ready to beat cancer for the 7th time. He is incredibly courageous and has been through so much. He has beaten this cancer over and over by the grace of God and research trials. He was diagnosed when he was three and is now ten. At this age, he is actively engaged in the decision making process. His mom wrote in an update on continuing with more trials

I know, I know, each day of the last almost 7 years have been borrowed time... Please don't get me wrong, I am very grateful for each and every day we have and I wouldn't change anything we have done because he wouldn't be here if we did. We have done this over and over again and managed to make each and every day count. But I am not ready to stop spending my days with him. I am not ready to give up, even though many people think I should. What are we doing to him, treatment after treatment, trail after trial...we are trying to save him, I don't know any different. We are trying to help other children not have to go through all of this. I am trying to spend every last borrowed day I have with him until he is 75.

I know this mom. I have hugged this mom. This young, brave, kind boy wants to keep fighting, but not just for himself. He wants to fight for other kids too. Here's a video of him from about a year ago.

Because of kids like Justin and doctors who won't give up on them, kids like Esther have a chance. And because of kids like our little friend who passed away last week, so much more research is needed. There's a big problem though, kids don't make pharmaceutical companies a lot of money and our government's funding for childhood cancer research is really, really sad. Here's an overall picture of the funding.

This is really not an exaggeration. There is no known cause for any childhood cancer (with the exception of genetic abnormalities).
One of the most respected, well managed places that raises money for kids with cancer is St. Baldrick's. My sister, Robin is organizing a fundraiser in September to send some dollars toward research for kids like Esther, Ali, Thomas, Taylor, Boden, Justin, Ozzy, Dillon, Isaiah, Abby, Kayla, and Collin. To raise money for the kids who will be diagnosed with cancer in the coming weeks and years.
At this point, Robin could still use a little help hosting the Shave-A-Thon and if you want to be a Shavee and shave your head to honor kids who didn't get the choice, raise some money, and create awareness for their lives, check this out... .
Over the last week I've found myself so grateful Esther has done so well. It's humbling because I don't know what makes her story different from our friend who died or from Justin's. God's kindness to carry Esther so tenderly through all of this is overwhelming to me and I wonder why does she, why do we, get to receive this gift and not a mommy who is heartbroken by a devastating loss? I want every child to get better.
We have sung loudly and clung tightly to the sovereignty of God through all of this. This is no different, but I think it's important to know. There are lots of places your time and money and efforts could go, but this is one that directly impacts Esther's life, the lives of kids like her, and the lives of the kids who will have cancer in the future. I never thought it would happen to us, but if I did, I'd want support the organizations that were fighting to give her a chance to get better. St. Baldrick's is just one of the really good ones. Over the next month, I plan to write about other ways to create awareness and support kids with cancer. So many of you already have just by sharing Esther's story. Thank you for laboring this journey with us.


  1. Being grateful to God during the good times and the tough ones is a daily prayer for us all!

  2. Ive wondered OFTEN why Taylors cancer was found before it spread, and not others, why us? (though I am SO GREATFUL)! I hate how little funding goes to kids. They are KIDS for goodness sake!

  3. Ha! I love Justin :) What a funny kid :) Keep up the fight Justin!!