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Last night we attended the Children’s Cancer Center annual Board of Directors meeting. We took our kids. Maybe not our brightest move, but once there it seemed wrong to make them sit in the car all that time. But in mingling, albeit loudly mingling, with the people on the Board and those who donate to make the Children’s Cancer Center a reality, it is a great chance for them to personally meet some of the kids and siblings who benefit from their wonderful contributions.

Survivor row, with Rachael thrown in for good luck, Dana Bertoch (Lymphoma survivor), Adelaine and Peyton…and if you look closely, you’ll see the “I tricked mom” pink cowgirl boots!

The cutest twosome ever!

The girls yukking it up during the loooong speeches

Peyton and Cody Bertoch…can you just smell the future wedding in the air??

For those of you who don’t deal with pediatric cancer, I’m so thankful that you will never have to cope with what we do. I wouldn’t wish it on my worst enemy. My grandmother passed away from cancer the spring I was pregnant with Rachael, my mother is a breast cancer survivor and I was honored to be with her through her surgery and as much of her treatment as I could. 15 months ago, if you’d asked, I would have told you that I had a pretty good grip on how cancer affects a family. I mean, this was my grandmother and my mom!

Nothing in my life had ever prepared me for finding out that my child, my youngest, my baby girl had cancer. This crushed me. People comment that I find so much humor and have such a great attitude about things, but those who read this blog in the first day know that it hasn’t always been that way. My first weeks and months were so overwhelmed with numbing fear and anxiety and worry. Every day I had to work to get myself out of bed just to face another day of life with cancer.

It took me a while to want to even think about going to the children’s Cancer Center, and it was after weeks and weeks of “Hey, we’re doing this neat program”, “We’d like to invite you to participate in this or that” from Sharin and Sara for me to finally decide to go. I remember the first day I went to a Little Tales meeting. I left knowing in my heart that I would never go back there again. I just couldn’t be with all those sick kids and their parents, I didn’t want to get to know them, I didn’t want to have to let them in.

Yet we went back. Week after week, and I did get to know the families, I fell in love with their kids, I grew to understand what a blessing it is to have a support group of people who truly GET what our live are all about. And I found that it wasn’t just about my fears and pain, but in getting to know all these people, it was such a blessing to be able to hug them and be there for them when their pain and fears threaten to drown them.

Wow, that sounds a little depressing, but that’s not all it is. I found my laughter again being with these people. I found my smile and my ability to see the humor of life again. There is a huge window that separates the room that the moms sit in for Little Tales and the playroom where the kids are going wild. The comment was made that it’s interesting to walk by and peek in the window because from one minute to the next it’ll be so very serious and solemn and then it’ll be the whole group of us laughing until we’re in tears. That’s just how it is. We connect, we get it, we laugh and we cry together and I am so thankful for the Children’s Cancer Center, the staff, the volunteers who’ve worked so hard to make our lives more bearable and in the process helped us to find our lives again.

Alrighty then!

For those who are following the “Peyton Hair Growth” watch…. it’s still coming in…..still all over. As my friend Basi commented, be very specific when you pray, our God has a very good sense of humor. I’m awaiting the day that we can braid her hair….down her neck….along her back….following her leg and ending with a cute little hair bow at her ankle. She may be the only girl at the prom with a turtleneck prom dress, but we’ll make it work.

Please keep those prayers for Hannah Deal coming. She’s had the vent taken out, she’s been moved from the PICU to a Hospice House. I’m unsure if this is a final move or if they are transitioning her to go home after this, but the choice was made to take her to Hospice and the family has a nice place to stay with her that they have made as homey and comfortable for Hannah as they can. Please keep her family uplifted as they continue to treasure this time and prepare their hearts. For my children, they have asked if Hannah’s all better now that she’s out of the hospital. It’s been terribly hard to make them understand that there is no getting better for Hannah, that even though she got to leave, she will leave us much too soon. Poor Rachael has had a hard time wrapping her brain around it…. I mean, I have a hard time figuring it out…. so please pray for the many children who love Hannah and for those parents who have to help them cope with the loss of their friend.

Another sweet friend is making her presence known at the PICU at All Children’s Hospital. Delaney Potterbaum is another little girl that we know from the CCC, she has a brain tumor called an Optic Glioma and it was explained as low grade and that it wouldn’t be aggressive. Unfortunately, they were very wrong and about 6 weeks ago it was found that Delaney’s tumor had taken a major leap in growth. She has been declining for weeks, but her family has held strong hope that her new treatment plan would make the tumor stop growing. Delaney is having an MRI that will tell them if the tumor has grown and is causing her symptoms. If the MRI shows growth there are no further options for Delaney. She has had all the radiation that she is allowed to have in her lifetime and there is no chemo treatment. Just keep Delaney and her family in prayers as well.

It is so hard to watch these two warriors succumb to their disease. I don’t know it is for the other parents, but I’ve lain awake at night, just wondering if I could make the choices they are being forced to make. What is like to have to make advanced funeral arrangements, what kind of flowers would Peyton want, what would I dress her in? I try to put myself in their place, but I can’t. Just like someone who doesn’t have a child with cancer can never understand what it’s like. A parent who’s not had to know their child is about to die can never truly understand that pain.. And I don’t want to, I desperately don’t want to. Its terribly morbid and I swear I haven’t been writing any poetry about it, but it has been heavy on my heart.

When you go to the Lord in prayer, please just keep each of these children and their families in your heart.

f.r.o.G…fully relying on God

ps. Dana Bertoch, our FAVORITE 19 year old in the whole world is an inspiring cancer suvivor. She has started a business called Glamour Flops, you HAVE to check these out. She’s donating a portion of all sales of her hand-beaded Glamour Flops to the Pediatric Cancer Foundation in honor of National Childhood Cancer Month.

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