Updates

It has been a long time since I have updated the blog. Things have been going smoothly and I just didn't have much to share. We had a nice summer and the girls have settled into school nicely. Della Jane LOVES kindergarten, Lillie and Emma are doing well at Spring Station and CJ is doing well in the 3rd grade. So, like I said, there just hasn't been much to report...until today.

Monday we went to Vandy to see a new doctor at a new clinic. Dr. Esbenshade is an oncologist who studied under Dr. Whitlock. He works in the clinic but he also works across the street in what they call the survivorship clinic. The survivorship clinic isn't anything like the onc-clinic. It is quiet, calm and it isn't busy - at all. At this point in Clara Jean's journey the emphasis has started to change from getting rid of the disease to watching for late effects and recurrence. That is what the survivors clinic does. They also focus on the emotional needs of the patient and the family. Dr. Esbenshade ordered some blood work, a urine test and an x-ray series.

The nurse called me today to tell me that the x-ray series looked good. She told me that there weren't any new lesions and that the lesion on her skull hadn't changed. Wait....what???? The lesion on her skull? She doesn't have a lesion on her skull!

The next phone call was from Dr. Esbenshade. He said he thinks what they mean is the place on her skull where they had to remove some bone hasn't changed. Great. He thinks. I asked him if he planned on verifying that and he said yes.

The next thing he told me was that that results of CJ's iron study aren't great and that she has to go back on her iron supplement. Ugh. This isn't that big of a deal but iron supplements cause upset stomachs. And upset stomachs cause CJ to be very grumpy.

Lastly, Dr. E. shares with me that the results of CJ's urine test aren't great either. Because she had LCH she is at a pretty high risk of developing diabetes insipidus and the urinalysis indicates that she may be developing it. I blogged about DI way back in the beginning, so I won't go over the details now, but let me just say that this isn't a fun disease. If she has DI, it will be a lifelong issue. It can be controlled by meds but it has to be closely monitored or it can cause some very serious, even life threatening problems.

My dad reminded me today that CJ isn't mine. She belongs to God and He loves her even more than I do. In my head, I know this. But my heart still aches. More than anything in this world I want her to be healthy. I have to remind myself that God doesn't promise us that our lives will be easy, but He does promise that He will never leave us.

One Year

Early on in one of my blog posts I wrote about how much difference a week can make. It was a week before Clara Jean's first surgery, her big surgery, and I was anticipating everything that was going to happen because of the "bump".


Well, now I am thinking, "what a year". It has been a year ago this week, that the bump showed up. A year ago this week that changed our lives. It was a Sunday night that Clara said she had a bump on her head. Monday the pediatrician looked at me with a puzzled look on his face. Wednesday there was a CT scan and Thursday the phone call that I can still hear. "It is a tumor."


Since then Clara Jean has had 3 surgeries, two more CT scans, 5 MRIs, countless x-rays, 13 rounds of chemotherapy and has taken medicine at home more times than I can even count. We have spent 6 nights in the ER and spent just under a week in the hospital, back in the fall. We have also seen the endocrinologist 3 times, the pulmonologist 4 times and the pediatrician lots of times.

Right now, my baby girl is in remission. There is an 80% chance that she'll never have to go through all this again. There will be check-ups and scans. But she's an old pro when it comes to that stuff. And so am I.

Clara Jean finished this school year (having missed 50 days and having 25 early dismissals) with a fabulous report card. She worked so hard all year. Not just on school work, but on getting well and getting on with her life. That is one of the amazing things about kids. They don't give up. They keep on, keepin' on. And Clara Jean has done just that. I am so proud of her.

Back to normal?

I guess we have a new normal. I mean, we have all been profoundly affected by what we have been through over the past, almost, year. Clara has made huge strides toward normal. She is losing weight and laughing a lot. She is running around like crazy and being too loud! She wears me out and I LOVE it.

The rest of us are still adjusting a little. It is strange because I guess I thought that when it was over, it would be over. But it looks like it may never be over. I feel like I am still changing every day through this. God has shown me so many things and continues to reveal Himself to me. When I think back on the support that we had during the really hard times, I am amazed. The people that God placed in our lives to come along side of us and support us and hold us up with prayer, just blows my mind. The people that crossed our lives because we were in the hospital that we were able to then pray for also, has been such a blessing. The way that I have learned to trust God. I mean, He really showed up. He really held my hand.

As I write this I can think of so many people who are hurting. So many people who are dealing with illness, job loss, marriage problems, uncertainty in their future. And I just want to reach out to them all, to pray for them and to share with them the peace that can only come from giving up our hurts and fears to God.

I am so thankful for my family. I am sooo thankful for my husband. God gave me a real life partner and we really leaned on each other through this process and it has only brought us closer. I am thankful for my good friends, the ones I can call in the middle of the night. But I am also thankful for the people that I have come to know and grown to love, probably only because Clara was sick.

Trust in the Lord.
Take time to be thankful.
Count your blessings.
Reach out to someone.

This is the end...

On January 18, Clara Jean had her last chemo. What a day. There were times when I really thought that it would never get here. Dad, Lorri and Abby were all in town for the big event! The treatment itself went smoothly. The nurses sang to her and gave her presents and everyone in the infusion area clapped and cheered!! I only cried a little! (Lorri and Abby only cried a little too.)

The song that the nurses sang was so sweet. To the tune for the Oscar Meyer song..."Our patients have the cutest s-m-i-l-e-s. Our patients have the sweetest h-e-a-r-t-s. We love to see you every day...but now it's time for us to say...Pack your bags head out the door, you don't need chemo anymore!!!


We were all going to go out and have a celebratory lunch after chemo, but it took so long and we were all so hungry, so we opted for the Vandy food court instead. I have had many meals here and even though it is a food court, there is something comforting and nostalgic about it. Tom came over from work and joined us and it was just about perfect.

Friday the 12th, Clara was scheduled to have a bone scan, an x-ray series and a CT. It was a really hard morning for her. She has asked me over and over what will happen the scans don't come back clear. Friday morning so kept refusing to get dressed, she had a meltdown about her boots, she was talking like a baby, she kept snapping at Della and then she almost hyperventilated in the car. She couldn't catch her breath and I was honestly afraid that she was having or was going to have a panic attack.

To make matters worse when we got there they told us that Clara didn't have anything scheduled. That she had, but someone cancelled it. After over an hour of trying to figure out what happened, she had her x-ray series and we left. We had to come back over the weekend to have the MRI.

On Sunday the 14th, Clara's 8th birthday, she had the MRI. The MRI that told us her LCH was gone. The MRI that makes me tear up every time I think about it. The MRI that told us it was time to move forward.