Monthly Archive: July 2016

July 1, 2016 – Morning

Good Morning!

So sorry for the delayed post, we played with our friends until late last night trying to squeeze out every last possible moment with them. By the time we made it to our room this mama was wiped out. I tucked Kayleigh in and crashed myself. Thankfully, Tim powered through and stayed up until the wee hours of the morning getting our lives from the last 7 weeks packed up and crammed in the car. Actually two cars, we had to get mom to come help us get home. Wow, we can accumulate a ridiculous amount of stuff in that amount of time!

Today is so bitter-sweet for us. We are SO thankful for how well Kayleigh has weathered radiation. It hasn’t diminished her shine, not one single iota. Honestly, she is probably shining brighter because of the amazing people that have been loving on her and investing in her here at St. Jude. I just don’t have the words to describe how wonderful this place is, and if you’ve been following this blog long you know I have plenty of words :)!

So this morning’s post is our thank you post. I don’t usually use names because I feel the need to protect people but today I have to. These people have made a difference in our lives every, single, day that will stay with us always.

Ms. Jenny, thank you for always greeting Kayleigh by name and being ready with a sweet word and a smile each morning when we checked in.

Ms. Gina, on our first day she was our tour guide. She made what could have been an overwhelmingly stressful situation comfortable. Escorting us from appointment to appointment making sure we didn’t get lost and making sure we had our feet under us. After that day she always had a big smile for us anywhere we saw her.

Ms. Diane, she was in charge of Kayleigh’s MRI in the very beginning. That was a scary day but she was bright and upbeat. Even weeks later she had a hug for all of us, she had not forgotten us 💜!

Ms. Jo Ann, our awesome triage nurse that is excellent at lab draws and keeping Kayleigh smiling even when being stuck.

Our Child Life Family
Ms. Ashley, thank you for making the scary things not so scary. For talking about losing hair and not feeling good. For talking to Grace and Cole too, knowing it’s hard for them to be left behind and that they don’t understand everything, giving them a safe place to talk. You were Kayleigh’s first safe place at St. Jude. When things were scary she would say “it’s ok, I can talk to Ms. Ashley”. Just knowing you were there if she needed you was enough.

Ms. Amy, thank you for always being a bubbly bright spot. We always look forward to seeing you and sharing all of our amazing radiation exploits with you. Thank you for thinking of nerf guns, they have give us some very fun memories and made radiation even more fun for Kayleigh.

Mr. Shawn, thank you for showing up at just the right moments to keep Kayleigh laughing and being sassy, even during the not so fun part of getting stuck. We’ve very much enjoyed sparring over our respective SEC teams. You’ve been just as wonderful for Tim and I as you have been for Kayleigh. For you and only you this Roll Tide girl will say “Geaux Tigers” – but just this once, and not out loud!

Our E-Clinic Family
Ms. Jackie at the desk, thank you for always greeting us each day with a smile. You’re always friendly, ready to laugh, making us feel at home and just sarcastic enough to appreciate us :). I promise I won’t use the word “quiet” around you ever again!

Heather, our awesome nurse, thank you for always being in a good mood, for being patient to answer questions and always being helpful.

Nicole, our NP – I don’t have enough words. Thank you for being amazingly competent but compassionate at the same time. Kind and soft spoken but sassy enough to appreciate the princess that is Kayleigh. Good natured and funny – watching you do an ear exam upside down while hanging off a hospital bed because Kayleigh was tired and didn’t want to get out of her wagon was one of my favorite days. Thank you for always being steady which made us feel safe.

Dr. Robinson, our gifted neuro oncologist that is never in a hurry. I know he has many patients to see each day but he always made time to answer our questions thoroughly (and boy do I have many questions). This diagnosis is a terrible one and he knows that far better than us, he’s talked honestly with us about treatment and different trials. He has encouraged us to look at all the information and make the decision WE think is best for Kayleigh. No pressure, No expectations, just for us to make the decision we think is best. From the very first day Dr. R’s confident, calm and steady personality have been exactly what we needed.

Our Radiation Family
Ms. Dee Dee, thank you for always scheduling us so we could have as much time at home as possible. And for never fussing if a called asking to change something.

Mr. Chance, Ms. Olivia, Mr. George & Ms. Jenny – you four wonderful people made radiation Kayleigh’s favorite place in the hospital. She talks about you all in every day conversation like you are her very best friends. You guys have taken a treatment that could have been scary and made it into the highlight of all of our days. Guys, thank you for laughing when she shot you with nerf guns and used you as punching bags. Girls, thank you for loving on her and braiding her hair back each day. You cannot know what you all mean to us or how incredibly thankful we are for you. We are going to miss you all so very much!

Valerie, our radiation NP, thank you for always smiling and being in a good mood. We owe you a huge thank you for our Muddy’s addiction. Those peanut butter bars might be the death of me. It’s probably good I’m going home!

Dr. Merchant, our amazing radiation oncologist. On our first visit, we as parents felt helpless and out of control. Dr. M and his team restored calm instantly. He didn’t have a magic answer or a cure but he had a plan. He is quiet and unassuming but radiates confidence. He is also an incredibly brilliant. We are so thankful that Kayleigh is under his care.

As you can see we have been blessed with nothing but amazing people on the journey. God has guided every step. He has assigned the perfect people that match our personalities and needs to care for us. As I sit and reflect on just how good God has been it fills my heart to overflowing. Not a single detail went unnoticed. God granted us this amazing team for care and precious new friends for support. He has enlisted an army to pray for us every day. Our every need has been met and we are so thankful.

As we leave our safe bubble of St. Jude we have no idea what the future holds. And yes, that is a little scary. But if God can orchestrate the last 7 weeks so perfectly I am quite certain He can handle the future. It is our job to continue to be faithful. To cover our girl and family in prayer every day. To love life to the fullest and tell of God’s greatness at every opportunity.

Our journey is far from over, it is just turning onto a different road for now. And you know what? I’m looking forward to it. I can’t wait to see the miracles God has in store for all of us, not just Kayleigh. I am expecting HUGE things.

Thank you all for traveling this road with us. For praying. For encouraging. We love you.

Until tonight,

Late night funimage

Hanging out in the craft roomimage

Our awesome radiation teamimage

Saying good-byeimage

The McClendon & Fera crewimage