rhonda mccoy

Today we went in for Charlie’s 5th week of Chemo. I have to say that little Charlie girl is SO smart and is getting used to all of the poking, proding, stretching, cold tables, blood pressure cuffs, “noodles” coming out of her chest, and the list goes on. The nurses each week comment that they cannot believe she doesnt make a sound when they access her port. She is a brave, brave girl.

Dr. Watts had ordered a chest x-ray today, just to see how she is doing. I was dreading this because it took 3 people to hold her down for it last time. She actually layed on the x-ray table and immediately put her hands over her head! The only other time she puts her hands over her head is to say “Hooray” or “Hallelujah”! About 1 minute later, we were done!

Dr. Watts met with us later and said that instead of going to the maintenance protocol in 2 weeks, we would most likely be repeating the initial phase of 6 weekly chemo treatments again, just because of her lung involvement, and other organs. He then said 4 beautiful words in regards to her chest x-ray today…..”It cleared up some”! That was music to my ears. The lungs are one of the slowest organs to show healing!

God, You amaze me! I thank You for guiding the doctors, the researchers, the nurses, the lab techs. I thank you for placing this passion on their hearts. I thank You for Your Word that declares Charlie’s healing. Thank You for using a sweet 18 month old angel to bring smiles to so many sad faces at the hospital today.

Thinking back to Charlie’s x-ray, I think she knew…. it was her first “Look at me, Momma!” Hooray!! Hallelujah!!

Last week we got the ok to travel up to Indiana for my niece Brittany’s wedding. It was a great time and Charlie had so much fun playing with aunts, uncles, cousins, Nana and Papa, and friends of Mommy and Daddys!! I have tried to be so cautious about her being exposed to alot of kids at once, as to keep her from catching a cold or virus.

Would you know the second night we were there, her own two sisters were up all night vomiting and with fevers!!!! Charlie slept through it all, never got sick, and when we got home and had her fourth treatment on Monday, all of her counts were good!! Thank you Jesus, for your Hand of protection!

Dr. Watts said he wants Charlie to have a chest x-ray this Monday, “just to see where we are”. I am hoping, praying and believing that “where we are” is the at the beginning of many “Miracle Mondays” to come!

I have been unusually anxious (not directly about Charlie) lately, and I am refusing to allow discouragement take up residence here. I read a womens devotional yesterday, which happened to be on the topic of becoming who God wants you to be. We often get lost in doing for others and pleasing everyone else, we forget to ask God who HE wants us to be. He had a plan in mind when He made each one of us. For me…I always wanted to be a mom. I am thanking God today for the opportunity to be mommy to 3 fabulous little girls!

The scripture that went with yesterdays devotion was…”I will praise You for I am fearfully and wonderfully made.” Psalm 139:14

This is the scripture that I had written in colorful magic marker and stickers and hung on the wall at the end of Charlie’s bed while she was in the hospital. What a great reminder that He has it all in control.

Sweet Charlie, you were WONDERFULLY made!!!!

Thank you to all of you who have prayed, supported, cried with us, sent cards, made phone calls, and given hugs. We love you all!

Flying Pacifiers

Charlie had her second chemo treatment last Monday, and she did great! We recieved a bit of bad news at the visit. The results from her biopsy the week before showed that she also has LCH in her bone marrow. We are to continue with the treatments as the protocol recommends, and at the 6 week mark, will repeat all scans and another bone marrow biopsy. At that point, if changes need to be made, we will find out then.

This news had the potential to freak me out a bit, but a heart to heart with my patient husband helped me out. Bottom line. We knew Charlie needed a miracle. She still does. That hasn’t change. There is no need to worry. It does nothing to solve, heal, restore, or uplift. So we pray…and we follow the doctors advice…and we wait for our miracle.

Charlie is doing great with her treatments! She had her third one today. Blood counts are good! The only side affect we notice is she is cranky and strong willed. We were told its the Prednisone. Thank you Prednisone, for making my sweeter than icing little girl into pickle juice! It’s not really that bad, but today at clinic, she was throwing pacifiers, sippy cups, and slapped the nurses hand when she was doing vitals. Oh, my dear Charlie….this will get better, I promise!

After her treatment, we went for Chinese food, and her fortune cookie read “Time heals all wounds. Keep your chin up.”

How fitting. For my fellow Alabamians suffering from the recent storms…keep your chin up. Our precious baby girl Charlie….keep your chin up. We love you and you are the bravest fighter I know!

Always Good

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.

Yesterday afternoon, Charlie Grace and I pulled into the now very familiar parking deck at Children’s Hospital. We were here to get the results from her lung biopsy that was done about a week and a half ago. I have to be honest. I really and truly expected more of the same. “Negative, negative, negative”. 

So, the doctor comes in and asks me how much they had told me when we were discharged from hospital a week before. Hmmm, that doesn’t sound promising. She then tells me that Charlie has been tested positive for a condition called Histiocytosis, and then sums it up by saying “its’s not really cancer, but treated like it, with chemo, etc”. We are to get yet more blood work, and then see the oncologist down the hall.

We grabbed our yogurt, bag of Sun Chips and pretzels, and headed to the lab. It was there that I once again had a glimpse of love. As I have mentioned before, Charlie doesn’t do well with getting her blood drawn. She has very tiny veins that love to collapse. This time, I decided to say to her over and over a phrase from a song I made up and sing to her a lot. So I am saying “Happy girl, good girl”, and through her screams and tears, she cries out “Happy dirl, dood dirl!” I just squeezed her closer and said “yes, baby you are a good, good girl and it’s gonna be ok!!”

Later on, while driving down the interstate,  I would cry out to God, and it probably sounded to Him a bit like Charlie’s cry to me. Full of anguish, a little hard to understand, but you know what? He understood and at that moment, I felt Him squeeze me just a little tighter and say…it’s gonna be ok!!

I love how God lets the little things, the ordinary, become so monumental just when we need it. Yesterday was full of ups and downs emotionally.  Last night I was lying down with Dakota, our 2 and half year old, and thought she had fallen asleep. Thoughts from the day took over and with my mind and body being weary, I began to cry. It was then I felt her stir. She reached over and put her arm around my neck and said 3 precious words…. “Pray…Mommy sad”, and then leaned over and gave me the sweetest kiss on my cheek.

I am thankful for the moments when fear fades, and is replaced with hope. I am now living out the words of a famous phrase.  Love conquers all. It really does.  It was love that saw 3 beautiful little girls, picked us out to be their mommy and daddy, and put within us the strongest love you can imagine. 

Dearest Dakota, Addison, and Charlie Grace….these days are a little topsy turvy, but know that we love you more than we will ever be able to express.  You have a Heavenly Father whose love for you makes ours pale in comparison. So never fear, baby girl, love always has and always will conquer all.

“You have taught children and infants to tell of Your strength, silencing your enemies and all who oppose you“. Psalm 8:2 (Thank you to my brother David for sending this scripture…)

Almost 2 weeks ago, on a Monday morning, our 16 month old daughter Charlie and I made our way to Children’s hospital for some blood tests. We had gone in the week before for a CT scan of her jaw to make sure a small cyst that had been removed in December was in fact still gone. It was ok, but because she is tiny, part of her lungs showed up in the image. There was concern as there appeared to be spots in the top of both lungs. This caused the radiologist to call the surgeon to call our pediatrician who called us. (Whew! Lots of calls made that day!) We needed to go to see a Pulmonary doctor at Children’s.

So…back to our Monday morning. Here we are getting blood tests as a preliminary to our appointment on Friday. About an hour and a half of waiting, and nap time, by the way, we were finally called back. Charlie looks over at the empty vials and starts crying. I guess she remembered the collapsed vein from a couple of weeks back.  Ok, not a good start. 7 vials to get today!  For 10 minutes I sang Elmo’s Song, ABC’s, Jesus Loves Me….you name it! I am holding this child so tight, and let me tell you, she was fighting!! I glance over to see…..no blood coming out. Great, another collapsed vein.  We move to the other arm, and the wailing, twisting and fighting begins. It was then that a song from years back came to mind and I started singing in her ear “I Feel Jesus….I feel Jesus…I feel Jesus in this place….”. I was almost shocked at how still Charlie became. She just laid her head back on me, and rested for 10 minutes as they continued to draw blood. She rested!  With her tears and my tears flowing….I sang and she listened. It was a God moment if I have ever had one.

I left that day wishing that I could let every single person who doubts, has been disillusioned, or whose faith is low, that there is a God. His name is Jesus, and last Monday He was at 1600 7^th Ave South, in a small back room of the lab.

My husband Everett, and I took Charlie back to Children’s that Friday to meet with the doctor and also had a new chest x-ray. This confirmed what they had suspected. There were lesions, spots, holes, and fluid throughout both lungs and this was urgent that we find out what is causing this. We were to admit her for extensive testing the following Monday. That brings me to 4 days ago.

First of all, I never knew before that 4 days could feel like 4 weeks. It seems that church last Sunday was months ago. They have run numerous tests, a Chest CT scan, put us in isolation for 2 days, released us from that, and just in time, I might add. This morning I was eating Starburst jelly beans like popcorn and marching around the room for exercise .  Stir Crazy isn’t even an accurate enough description!

With so many of the tests being more blood work, you can imagine the stress level. Our poor sweet Charlie girl! I have watched her though, and been amazed at this precious 16 month old. She is so brave. When they come to draw blood, she starts crying, and fights her way the whole time, sometimes screaming “Mommyyyyy”, but as soon as they are done? She smiles at them, sometimes gives them a high five. And she always curls in my lap after.

This really had me thinking. I think when Jesus said in Matthew 19 to “let the children come to him”, this is one of the reasons. There is nothing….nothing like the faith of a child. To be hurt over and over and over, and not hold a grudge. Still smile. Still give a high five. Still search out a lap for security, and arms to hold close when they feel bad. Now that is faith. That is saying I trust you. I know you love me. I don’t know why this is happening, but I know whose arms I want right now….my mama’s or my daddy’s.

As this week is coming to a close, they have decide to do a lung biopsy on her tomorrow morning to just go right to the source and hopefully have answers for us soon. I wish she didn’t have to go through this. As a parent, it breaks my heart to see her in any pain, and understanding risks and complications, of course makes me worry for her. But the worry fades because  of a look between a mama and her baby girl.

I look into Charlie’s big beautiful brown eyes, and I see nothing but love and trust. She taught me something this week. No matter what I am facing, or how much this is hurting my heart, I too know where to turn. I look to the heavens and smile. I hold no grudges….God is not my enemy….His arms are my refuge. I know He loves me, and He loves Charlie even more than I do. We have no doubts and nothing to fear. Jesus is walking the halls 1600 7^th Ave South tonight where He is surrounded by brave little hearts and faith so strong, that He is going to move some mountains with it!