The news I have about Clara Jean is all good! Over the last few months we have had some tests and some scans and the results couldn't be better. Clara's blood work is as normal as it should be. Her urine tests all point to her not having diabetes insipidus. And lastly, her scans are great! The place on her skull where they had to remove bone is still getting smaller. That means that it is continuing to grow back just like it is supposed to. This month, it has been a year since CJ's last chemo. It really doesn't seem like it has been that long! We have been officially changed from 3 month check-ups to 6 month check-ups!

Interestingly, Clara isn't too sure how she feels about that. I was watching her last week at her check-up and it is almost like a homecoming for her. She gets so excited to see all the wonderful nurses who took care of her while she was having her chemo. Those sweet ladies were all oooing and ahhing over Clara. Saying things like, "Clara Jean you are getting so tall. Oh my, look at Clara Jean, you look so pretty, your hair is getting so long!" And let me tell you...CJ was eating that stuff up! She couldn't stop smiling. She feels safe and loved there. And I don't blame her. I am ready to put this chapter behind us, but I don't want to forget the amazing care that was given to my daughter during her time of need by an amazing team of nurses, and doctors too!

I want to share with you a little bit about our friend Savannah. Savannah is about a year older than Clara Jean and is battling cancer for the third time. Savannah is one of those kids who you are just drawn to. She has a way about her. Her spirit, her smile, her determination are all things that you can't help but notice. I have to say, we don't know Savannah well. We would see her at the clinic and say hello. Sometimes she and Clara Jean would "chat" on their DSi(s) or chat with each other in person. Even though we don't know her well, we feel like we do. Clara loves Savannah. I think that these kids just get each other. They feel a bond with the other kids who are going through the same things that they are. They look around the room and they don't feel judged. They don't worry about what the other kids are going to think. Savannah needs your prayers. Her last set of scans were not good. Her cancer is progressing, rapidly. I don't know what else to say except please pray for her. She so wants to live and she is giving this fight everything she has. You can follow her progress at www.caringbridge.org/visit/savannahswandal.

Thank you for continuing to pray for Clara Jean and our family.

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.

ONE more chemo

(If you want to, scroll down to November 1. I wrote a post that I just added tonight. I thought that it would put it at the top, but it put it in by date.)

Today Clara had chemo. Her counts were good and things went well. We did get some GREAT news. CJ only has to have ONE more chemo. January 18th is the last treatment date. I cannot tell you how I feel right now. Oddly, I thought that all I would feel was pure joy. But to be honest, I am a little scared.

In the past I have felt relief. Relief that we made it through surgery. Relief that the pathology report wasn't cancer. Relief that her chemo was supposed to be mild. And all though each of these were good things to be putting in the past, it wasn't quite the end that I thought it would be. Is it really going to be over?

Also, I think that I have had this false sense of "safeness" from the chemo. The odds of her disease making a comeback during treatment are so low. What now, that treatment is over? Does the chemo being over open the door for the LCH to waltz back in? Medically, the answer is no. The biggest reason we did the chemotherapy was to decrease the chance of recurrence. I KNOW that. But...it feels like we're losing our safety net.

On the other hand, I cannot wait for CJ to feel good. I cannot wait for the day that she doesn't have to be stuck with a needle. I cannot wait for all the medicine to be off the counter and out of our lives. I simply cannot wait for what we knew as normal, to be here again. Where we are now isn't our new normal...it just isn't.

So, here is the plan. On January the 18th, Clara will have her last treatment. She will take her last 5-day round of steroids that week. We will schedule scans of her entire body, to make sure that there is no sign of LCH. We will schedule surgery to remove her port. Clara Jean will have to take her maintenance antibiotics for three months. She will go back for a check-up and blood work at the end of that three months. And then we won't have to go back again, for a year. All of this assuming that things go as planned.

Now, I am not expecting anything to go wrong. But from past experience, I have certainly learned that I can't count on my plans to go the way I want them to. The thing is, that from past experience I have learned that I can count on God to be right beside us. He has held us close through so much pain. Through so many unknowns. And we have been able to face those unknowns because of what we did know. That we weren't alone. That God's love is unfailing. That He has a plan for us. That He loves Clara more than we do.

MRI

Gosh, I am sorry that I haven't updated the blog since Clara had her MRI. I do have a lot on my plate, but it isn't very nice for me to post that she is having headaches and then leave you hanging! The MRI was clear. Not a trace of LCH. YIPPEEE!

We have had a little adventure around here though. Twice I have had to take Clara in because she was running a fever. Once to the ER very late at night and once to the clinic in the morning when she woke up with a fever. Both times, at home, her temp was over 101. Both times, when we got to the hospital, her temp was normal! Both times she got very cold in the car and I guess that is when her fever broke. Both times I prayed like a crazy woman. Both times I sent emails and texts asking for prayer. Both times those prayers were answered. God is good.

Today Clara had chemo. Her weight is down a little and her blood counts are as normal as they get when you are a chemo patient. We are in the home stretch now. We are nearing the end of our 6 months. Clara has chemo scheduled for December 28, then she will have one (or two) more in January. I cannot tell you how much I am looking forward to putting this behind us. Of course there will be check-ups and scans in our future, but that is okay.

Headaches

Oh my, Clara Jean is having headaches again. For about two weeks now she has been complaining pretty much non-stop that her head hurts. Truthfully, I was ignoring her, blowing it off. Maybe it was a defense mechanism on my part. But on Monday her teacher called me to come get her from school. CJ had been complaining about her head hurting and was feeling really tired. I told Mrs. Heep that she has been complaining of her head hurting a lot and she said, "yes, she has." So not only is she complaining to me, but she is complaining at school. I called Dr. Whitlock's office.

When the nurse called me back she told me to take her to the pediatrician and have her checked out to rule out other causes before our next chemo treatment on Monday. She also said to have her blood pressure checked. Sometimes steroids can cause high blood pressure and high blood pressure can cause headaches.

I called Nurse Molly at school and asked her if she could check CJ's blood pressure. She did and it was fine. Then I called Dr. Mangrum's office and made an appointment.

This morning we went to see Dr. Mangrum. He checked her out from head to toe. Nothing. No signs of a sinus infection, ear infection, migraines. He recommended that she be scanned again. I asked him what the chances of the disease coming back, during her chemo treatments. He reminded me that nothing about this disease, and more specifically, nothing about Clara's treatment, has been typical. Now remember, her last CT was clear. But LCH is is fast and sneaky. So that makes me nervous. Also, the scans can be clear even after symptoms present themselves. So she could have pain and a clear scan but then a month later a tumor shows up.

Please pray for her. Clara is terrified. In fact, it wasn't until yesterday that she told me that the pain is mostly right in the spot where the tumor was. She said that she was too scared to tell me. She keeps asking me these "what if" questions and I am doing a decent job with my standard answer. We deal with what we know and give the worries to God.

Holiday World

Clara Jean spent those few nights in the hospital right after we went to Holiday World. So, I forgot to share about all the fun we had. Here are some of the highlights.

While Tom took Emma and CJ on a roller coaster, Lillie, Della and I hung out.

Lillie and Della Jane, fighting over the steering wheel!

Della winning!

Yep, our car broke down, in the middle of the road!

Ahhh...free drinks!

Della trying to decide what to do next. Daddy was taking the other girls on a BIG ride, again!

She picked the canoe ride. I wish I had this on tape. She had both hands in the water trying to make the "little boat" go faster!

All four of my girls!

Clara waiting on the waves.

Can you tell they are freezing? The water was sooo cold. I took this picture right after Della took off and went down that blue slide, by herself.

Clara peeking over the railing at me!

Tom and the girls coming down the slide. They went on this about 6 times in a row!

Tom, Lillie, Emma and Clara on The Legend.

Chemo week

(I wrote this on November 1 and never posted it.)

This past week was a chemo week. I have lost track of how many treatments Clara Jean has had. And to be honest, I don't know how many she has to have, only that she will have treatments until sometime in January. And from where I am sitting, that is a LONG way off. I know that it really isn't, but the past 5 months have been the longest of my life.

With Clara having 2 weeks off now, between chemo treatments, life is starting to feel a little normal again. This last break, she felt better than she has felt since this started. One of the hardest parts for me is to watch my once rambunctious, full of energy little girl, sit and watch her sisters play. She'd tell me she was too tired. I used to want her to calm down, sit still. Now all I want her to do is run and yell and laugh. Finally, over the last break, she started to do that.

We went to South Carolina over fall break to visit my parents. Lillie turned 12 while we were there visiting! We celebrated by going to a corn maze/hay ride/pumpkin patch/zip line/rope swing place. (There was even more stuff than that, but I can't remember it all.) Anyway, the girls all loved it! Heck, the adults loved it. It was so fun.

Isn't it wonderful to sit back and watch your kids play? Do you ever do that? I know, we're busy and who has time to sit, right? Life is too short to spend it working and cleaning and cooking and doing laundry. I know, all of those things have to be done. But your kids are only kids for a little while. Play with them, while they still want you to. I found a chair near the rope swings and watched my kids swing and laugh, over and over. Not a care in the world. Even Clara. That girl had bruises on the inside of her thighs from the ropes! It was so wonderful to see the smile on her face and the twinkle in her eye.

Clara

I know that a lot of you don't know Clara Jean personally, so I thought that I would tell you a story or two about her. A story that will show, a little bit better, who she is.

Clara was an easy baby. She was content and entertained herself. She was always moving and exploring, but was so easily entertained. Her favorite thing was high heeled shoes. That girl could walk in heels better than I can at age 2. I am not kidding.

One Thanksgiving we were with some of our extended family having breakfast. Clara was about 20 months old and I think that it was the first time that she had spent time with my grandparents. They live in Florida and we don't get to see them as often as I would like. Anyway, Clara had on her little nightgown and a pair of her grandma's high heels. The floor was tiled and she was stomping all around in them. My grandma (remember, CJ really didn't know her) was sitting on the couch with her breakfast plate. Clara walked right over to her, grabbed the bacon off of her plate, stuck in her mouth and pranced off. It was a riot!

A couple of years later I was sitting on the couch in our living room. Clara and I were the only ones at home at the time and I heard her talking, coming down the stairs. As she came around the corner I saw that she was talking on the phone. Now I hadn't heard the phone ring, but I could have missed it. So I asked her who it was. "It's Bob" she says. So I ask her, "who? who is Bob?" She leans in, points at the phone and whispers, "it's this guy on the phone." And I ask her again, "WHO??? Who is Bob??" She leans in again and whispers, "Bob is the guy who is going to give me Cinderella checks." WHAT!!?? I take the phone away from her and ask the man on the other end, Bob, who he is. He gets a little mouthy and tells me that he is selling checks to that woman and that I better give her the phone back. I tell him that that woman is my 3 year old daughter and I hang up. Clara is gone. I go and find her, in her room, crying with a flyer from check.com. Sure enough, she had dialed the 1-800 number and told Bob that she wanted Cinderella checks! She was crying because I hung up on Bob and now she wasn't going to get the checks that she wanted.

How we're doing

I just wanted to share a little about how Clara Jean has been doing. And the rest of us, for that matter. CJ is amazing. She is doing so well in/at school. The last week that she had chemo was the week before last. On that Tuesday, for the first time all year, she told Mrs. Heep that she wasn't feeling well. I went to pick her up and she came home and crashed. On Wednesday she did the same thing. Then last week she went every day, all day! And she felt good the whole time! I was so excited. Her ANC was very high at her last treatment, almost 5000! No wonder she feels good. I mean, it was 220 the night she went into the hospital.

And at school she is doing so well. Her grades are great and she is controlling her emotions so well. She isn't getting into any trouble, at all. Not even for talking too much! She is still struggling a little at home with her emotions and her temper. I think that she works so hard at school that by the time she gets home she is just done. But even here, things are improving.

Monday is a chemo day. My sister, Kylie, will be here from Indiana visiting. CJ asked me if Aunt Kylie can come to chemo with us. She said, "I want Aunt Kylie to see how strong and brave I am. She is going to be so proud of me." Just precious.

The rest of us are doing pretty well. Tom is working two jobs and is hardly ever home. That is pretty hard on my girls and on me, but we are dealing with it. He has been working two jobs for a while but he started a new 2nd job about 6 weeks ago that is a lot more hours than the one he had before. And when I say a lot I mean he went from maybe 8 hours to 20-25 hours a week. Oh' and he did start working on his MBA again, so that is good.

Lillie is doing well in middle school. Straight A's. Boys. Make-up. New cell phone. You know, all the things that make 12 year olds tick.

Emma is also doing well in 5th grade. Ditto the above except the make-up and the cell phone. She has to wait a little while longer for those to kick in.

And of course Della is as cute as ever. She loves preschool and is just a little ray of sunshine. She truly is the happiest kid I have ever been around.

The three of them have been incredible sisters to Clara. Don't get me wrong, they still fight like sisters do. But they have been supportive and loving. And this hasn't been easy on them. It is scary to see your little sister, who is usually the spunky one, sick. And it has been hard on them too because we never know how CJ is going to feel or what she is going to feel like doing. It seems like every time we think about doing something or the girls ask to do something the answer is always, "I don't know, we have to see how Clara is feeling."

Lung update

I took Clara to see a pulmonologist. They examined her chest x-ray and decided to do a lung function test. After the test the respiratory therapist came in and give Clara a breathing treatment. Then they did another lung function test. On the second test her lung function had improved by 10%. That generally isn't enough of an increase for the pulmonologist to think that the breathing treatment did it's job, but in this case she decided that the breathing treatment helped.

The doctor told us that there is inflammation in her lungs that is usually caused by acid reflux or asthma. So the pulmonologist decided to treat Clara for both. CJ had horrible acid reflux as a baby and the chemo/steroids often cause stomach problems. So they gave her an inhaler and put her on an acid reducer. We go back to see them the end of November so they can re-evaluate her condition. I will say that her cough improved dramatically in just a few days of the treatment and she seems to be feeling better than she has felt in a long time.

Slacking

I guess I have really slacked, huh? No news for a while. Things have been going somewhat smoothly for Clara and I have been sick, so I just haven't felt like doing an update. Here's a recap.

Chemo #7 went well. Her ANC was 3100 and we celebrated! Praising God because he is faithful. Clara has been going to school quite a bit and doing very well there. Her teacher has told me several times how proud of her she is. She is handling her emotions well while she is at school and doing well on her work.

Then there is this cough. Clara Jean has had a cough for weeks. She had it when she was in the hospital and she still has it. The oncologist has examined her and listened to her chest several times. Nothing. Toward the end of last week and over the weekend the cough seemed to be getting worse to me. Monday morning she said that her throat hurt, her head hurt and her chest hurt. So I am thinking flu, strep, something like that. I called the oncologist's office and they told me to take her to her regular doctor. So I called his office and set up an appointment for 1 o'clock.

After examining her he asked me some questions about her counts and how she had been doing with her chemo. Then he told me that he didn't really see a reason for her cough. He said that his concern was fungus in her lungs. He told me that because her ANC was below 500 for several days that she was very vulnerable to this type of thing and that he wanted to do a chest x-ray.

The chest x-ray was clear so we are going to see a pulmonologist. The problem with that is that the pulmonologist is booked until the end of December!! So we have an appointment scheduled and we are on the cancellation list. I am praying for there to be a cancellation soon. I also have a call in to the doctor to see if we should take another course of action, like taking her to the ER.

Please pray for us and this situation. We are concerned and are not sure what we should do. Clara is coughing non-stop and is miserable because of it.

Thursday's counts

I am going to start this post off with some EXCELLENT news! Clara's MRI was clean! No sign of any disease in her skull or around it! God is good.

Thursday morning I took Clara Jean back to have her counts checked again. Luckily we got a nurse that we have had before and that I really like and trust. She had no trouble with her port and we didn't have to wait too long for the result. Her ANC was up to 850! So I asked the nurse, "she can go to school, right? Since it is over 750." This lead to a discussion about her immune system. Here's the thing, and I think I have shared some of this already, the chemo drug that Clara gets is called Vinblastine. (And she is also on Prednisone.) Vinblastine doesn't usually cause the trouble that it has for Clara. Usually kids "breeze" through Vinblastine treatments. Remember way back when I told you that Dr. Whitlock said that CJ would probably be able to go to school after her treatments and she'd feel pretty good. Remember a the first time her counts were low and I told you that the nurse had told me the week before that she doesn't worry about counts being low with Vinblastine. Well, it hasn't been that way for us. Clara has struggled a tremendous amount.

After talking to the nurse, we decided to wait until CJ's ANC was over 1000 to send her to school. Because it was a surprise that her ANC got all the way down to 220. Because it has taken almost two weeks for it to go from 220 to 850. Because the flu, strep and everything else is going around so much. Because she still has a cough and isn't feeling all that great. We just decided that we'd rather not send her back before she is good and strong.

Monday is chemo #7. They will check her counts again on Monday and I am hopeful. She misses school so much!