rhonda mccoy

Well, dear friends, I am once again sitting here with my laptop, about to give you an update on sweet Charlie. I don’t want to be typing these words right now, but you are my prayer warriors, you are my friends, you have carved out a place in your heart for Charlie. And so, I write…

As you know, we have had a 2 week breather so to speak in tests, treatments, pokes and prodding. We have been lifting Charlie in prayer continually. We have been praying scripture over her, and teaching our girls to pray, to quote scriptures, and to simply trust. Simply trust.

We are scheduled to have scans repeated on her head and chest on Monday, and possibly start as soon as next week. That is what our logic told us to do. That is what the doctors who have dedicated their lives to saving the lives of little children, have told us to do.  So, with our minds….we scheduled. With our hearts…we simply trust.

So, tonight just after giving Charlie her bath, I was getting her dressed and she was being her silly self. Laughing, giggling, and being squirmy as usual. In the middle of one of her biggest laughs, I saw a lesion on her top right gum. (One of the telltale signs of LCH). At first, I thought it was something in her mouth….then we played the “say ahhhh” game, and I was silently punched in the gut. I am guessing some angels were dispatched immediately as they saw my shoulders droop, and ever so gently they took hold of my elbows and began the task of lifting my arms until the strength had been renewed.

I immediately sent word to Everett, who was not here at the time, and then we were able to talk and lift each other’s faith and spirits. I am so thankful for a husband who loves his family and his God so passionately. No, we don’t have answers. Yes, we are hurting. But, this one thing we are assured of. God will get, and IS getting the glory, even now! We may be on a rickety boat on a stormy ocean wave, but we have a calm, just knowing that the God who created Charlie, has His hands on the oars. Ephesians 3:20 says “Glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope”. We have dared to ask. We have hoped. And we give Glory to God!

The past couple of weeks have brought me in contact with many wonderful people who are parents, friends, etc…to a child with LCH. It has been such a blessing to talk with these moms, and friends, and draw strength and support from them. I want to share with you what a new friend (as of yesterday) :-) had shared with me tonight. It is the passage from Psalm 91. Such a beautiful passage, and one I have heard many, many times, but tonight every word had a new significance. It was as if God was writing this on my heart. A portion of it says this:

“Those who live in the shelter of the Most High
Will find rest in the shadow of the Almighty.
This I declare about the Lord:
He alone is my refuge, my place of safety;
He is my God, and I trust him.
For he will rescue you from every trap
And protect you from deadly disease.
He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.”

So, tonight I have the promise of safety. He is not only my (and Charlie’s) armor and protection, He has decided to cover us. Not with stones, wood, heavy wool blankets, or a scratchy tarp, but He has chosen feathers. It’s like He is tucking us in…pulling that fluffy feather comforter of His love right up around our chin, wrapping it under us, and whispering….”I have you covered. Do you see those wings above? They are mine. That is your shelter. You have trusted me. And I delight in that. Sleep well, little one….”.

Please keep us in your prayers. We feel each and every one of them and are so grateful for the outpouring of love and support. Love to you all tonight.

 Psalm 111:3 “Everything He does reveals His glory and majesty…”

Disclaimer: This blog entry is a little more transparent than usual. Proceed with that in mind.

I used to love rollercoasters. For several years while living in Indiana, the highlight of the summer was a trip or two to Cedar Point. I absolutely loved everything about it. The 3 hour drive there, pulling in to the parking lot, the excitement as we walked through the gate, and then the rush to get to our favorite ride. It was there we saw the sign saying “60-90 minute wait from this point”.  And then more fun….waiting, people watching, drinking a diet coke, all while slowly working our way through the line.

The best part was when you finally made it to the top of the never ending stairs and you then stood like cattle in little tiny lines, just to wait for the “right” seat. Sometimes it was the first seat, sometimes the last seat, and if you want to play it safe, you went for a middle seat. I usually made my way to the back, took my seat, felt the massive harness click in place, and then… wow. Adrenaline rush. We were chugging away from the station…tentative screams beginning. Slowly we went up the hill that seemed to reach to the clouds. I loved the view from there. You could see Lake Erie, the park, beautiful trees…..WHAM!  We were suddenly flying down a hill at a 90 degree angle, and my stomach was in my throat. The rest of the ride was total chaos of screaming, and laughing till you cried.

That was then. I haven’t been on a roller coaster in quite a while. Not because I don’t want to …I just haven’t had the opportunity. As of late, I have been on a roller coaster of a different kind though. I call it the Emotional Magnum (in honor of my old favorite ride). :-) I have to say, that this one is not near as fun. I feel like I just ran through the gate, found our ride, and just saw the sign saying “WAIT….from this point”. No time limit. It just says WAIT.

So, I am very slowly making my way through the line. It seems each day I look and see someone else waiting in the same line. Every now and then I get a glimpse of someone who is cheering and screaming as they just got off the ride. Soon I will climb the steps, with the hand of my husband and the tiny hand of my youngest daughter, and we will choose our seat, feel that harness click in place, and then we will be off for the ride of our life.

I have decided that along the way, I will show Charlie the beautiful blue skies, we will look at the lakes, and the trees, we will scream and laugh until we cry. Her daddy will take her fishing this summer. She will hold on tight to the chains of a swing and giggle as we push her higher. She will dump water on her sister’s sand castles. She will go swimming in the heat of the Alabama summer. She will curl up on my lap after a long day, and drift off to sleep. She will snuggle close to her Daddy’s chest as he carries her to her bed.

Am I in denial? No, I am in acceptance. I accept the love of our Heavenly Father. I accept the Truth of His Word that says He will never leave us. I accept His gift of healing. I accept the promise of Nahum 1:7 ^“The Lord is good, a strong refuge when trouble comes.  He is close to those who trust in him”.

Although today, I may have butterflies on this here ride called the Emotional Magnum, I am hanging on for dear life, ready to burst forth with laughter and squeals of delight. Because that’s what you do on rollercoasters, isn’t it?

When I hear the words “life is a journey”, I usually think of a slow, lazy trip that one is taking with interesting little twists and turns along the way.  Our journey as of late has been like being stuck on the Verrazano Bridge at 5:30 pm with no A/C in the middle of July, with hungry kids screaming in the backseat, my Diet Coke all gone, a migraine, and the gas tank pushing well below “E”. I think you have the picture!

It’s not really that bad, to be honest. But I think to best describe it, we are just walking.  One foot in front of the other…the cool down, so to speak.  I thought I would try to keep everyone updated on Charlie’s journey, by keeping up blog entries when there has been a new development or change in plan, etc.

We want to thank each and every one of you for your many, many prayers, concerns, talks, listening ears, wisdom, and most of all just being there. The one thing we have learned in such a short time these past few weeks is that there is still a lot of good in this world. There are compassionate eyes, and open arms. There are shoulders that still do not mind if you cry on them. There are strangers who become close to your heart in an instant.

Yesterday,  Charlie has her skeletal survey done. Basically, a full body x-ray to look for any holes or lesions in her bones. We later met with her oncologist, Dr. Watts, at Children’s Hosptial here in Birmingham.

He informed us that the gum lesion that was biopsied in December had been re-evaluated and it was also LCH (Langerhans Cell Hystiocytosis). He then let us know that there were at least one, and maybe 2 holes that showed up on her skull from the skeletal survey. These three things combined put her in the “Multi-site, high risk” category.” Multi-site”, because of all 3 locations, and “high risk” because of a major organ (lung) involvement.

He explained the recommended treatment (combination of steroids and IV Chemo) which is a national protocol that all of the doctors follow when treating LCH. We were all in agreement to wait a couple of weeks, repeat the Chest CT, and a full Head CT. He is recommending we start the treatment at that time.

We know that the God we serve is a Healer! Please continue to hold our precious Charlie in your prayers. God will get the glory, regardless of which way the road twists or turns in the days ahead. No matter what path our feet walk down, God will have gone before us, paving the way.

His Hand will be evident. His Arms will be constant. His “Grace” will be sufficient.