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!

Still no school

Tuesday was Della Jane's first day of pre-K! They grow up fast, don't they. Some parents were walking their kids in so I asked DJ if she wanted me to walk her in, "no thanks" she says. So we drive up to the line and she is so excited she is bouncing around in the backseat. Mrs. Jeanna is our sweet preschool director, she opened the door for DJ and we started talking about Clara. DJ wasn't having any if that. She squeezed around Jeanna and ran in. Then she came back, stuck her head around Jeanna, waves and yells, "bye mom, love you." And she was off again.

Clara Jean and I went up to Vandy to have her counts checked again. I made a point to ask Dr. Whitlock last week, what her ANC had to be for her to go back to school. See, I knew that we would be dealing with different people, nurses and doctors, that all have their own opinion of when it is OK to go back to school. I wanted to know what Dr. W wanted and I planned on following it. And it was a good thing that I asked.


CJ and I got to the hospital a little early. (I know, I am never early.) Anyway, we have been early before and it worked nicely because they took us back and moved us right along. This wasn't the case on Tuesday. I guess since they were closed Monday they had all of Monday's and Tuesday's patients there. It was a lot of people. Did I tell you the story a while back about the lady, a patient's mother, who was going on and on about Miley Cyrus? Miley isn't really 16, she's much older, it is all a publicity stunt. Miley wouldn't be famous if it weren't for her dad...blah, blah, blah. So this same lady is in the lobby, on the phone, yelling. Not yelling at the person on the other end. No, more to the person on the other end. Something about the idiotic nurse and on and on. Well, I think we got her nurse. Not the idiotic part. But she wasn't in the best of moods and I am thinking maybe it was because she just got chewed out.

The nurse accessed CJ's port and did have some trouble getting the blood to flow. It took her a little while to get it moving but once she did it was fine. It was so crowded that we had to go back out to the waiting room and sit. After almost an hour the nurse came out and told me that her ANC was 640. She said, "I know Jim, I mean Dr. Whitlock, says that she needs to be at 750 but she really can go to school if it is over 500." Umm...thanks. But I think I will stick with what my doctor told me. I mean really. It has taken her 9 days to go from 220 to 640. The doc last week said that she was bouncing back slowly. So why would I send her to school before she is strong enough? Why would I put her in a situation that will likely land her right back in the hospital? So I told the nurse that I wasn't going to send her to school until her ANC was 750 and she was a little irritated. So then she says,"well, then you should just wait a day or two and then send her back. It will be up by then." Again...no. I told her that I was going to bring her back on Thursday to have her counts checked again. I'm sorry, but I am not going to take any chances with my little girl.

We'll head back on Thursday. I am praying that her counts are incredibly high. Surprisingly high. I so want her to feel good.

MRI

Yesterday we went back to Vandy for an MRI that has been scheduled for a couple of weeks. It is routine to check her the spot where the tumor was after the first six weeks of chemo. I was, again, a nervous wreck about the germs in the hospital. But CJ is a pro.

When we get back to the room to have the MRI the tech tells me that they don't have the nursing staff to access her port so she will have to have a regular IV. I tell her that they had told us that we could go upstairs to have her port accessed but that I don't know if anyone is there on Saturday. So she calls someone on the 6th floor and they tell us to come on up. Long story short, after 45 minutes and trying twice, the nurse cannot it. She thinks that she is in but no blood is coming out. What happens is after the needle/tube are in they flush it with saline and a medication to keep it from clogging. When they are flushing it they push some in and then pull back on the syringe, to pull some blood in, so they are sure that they have done it right. Well, the saline was flushing fine, but no blood. The nurse thinks that maybe her line is clogged, maybe there is some clotted blood. She thinks she it's done right because Clara isn't saying it hurts when she flushes and because Clara says that she can taste it. She always complains about the way it tastes. I ask the nurse what they will do if her line is clogged and she says that there is stronger medicine that they can push through to unclog it. So she ends up with a regular IV anyway!

The MRI went well. She wiggled a little, but overall was still and they got all the images they needed.

Friday's counts

Friday morning CJ and I head up to Vandy. I am a nervous wreck about her touching anything in the hospital! I think that I told her a million times not to touch anything! She did a very nice job of keeping her hands folded, even when she sat down, she kept her hands in her lap.

The doctor examined Clara and said that she looked good. No fever, nothing hurting. She does have a slight cold, but nothing big. I was also happy to see that her weight is going back down. I forget how high it got but she is only up about 12 pounds now. I know that she was up at least 15, so I hope this means we are headed back to normalcy.

They take blood and the numbers that come back are not what I had hoped for. Her ANC is 380. If you remember it was 220 on Sunday and 300 on Wednesday. So it is going up but a lot slower than anyone wants them to. Including the doctor who reminds me to keep her out of public places and to watch for fever. She tells me that they'll see us back on Tuesday.

Day Three

I am a little behind...sorry. Monday night and Tuesday night Tom spent the night at the hospital with Clara and I came home and stayed with the girls. Then in the mornings after Lillie and Emma had gone to school and I had dropped Della off with a friend, I would head up to the hospital.

We were frustrated because we kept getting different information. We thought the ANC (absolute neutrophil count) had to be 500 to go home. Then we thought that there had to be two tests, both showing an increase in numbers. Then we heard that she had to be fever free for 48 and have two tests with increasing numbers. Clara had been fever free since the middle of the night on Sunday, so we were happy about that. But her ANC was only 220 on Sunday night and they hadn't checked it again, so when Wednesday morning rolled around, I had no idea what to expect.


Wednesday at about 11 the nurse came in and told me that her ANC was only 300. She didn't come out and say it, but I don't think she thought they would let us go home. Then an hour or so later the doctors come in and say, "so, do you want to go home today?" I was surprised but they said that we could. Then it got a little weird. I asked when we needed to come back and have her checked again and they said that we didn't. Ummm...OK???? So they tell me they'll get the paperwork ordered and they leave.


Clara Jean wanted to go down to the playroom so on our way down the hall I asked if our nurse could come down there and talk to us. We were playing Connect Four, Clara was beating me for the third time, when she came in. I asked the nurse when Clara Jean could go back to school, she said when her ANC was 750. We talked for a minute about neutropenia and how many kids it effects. Then I asked her how long it would take before we could leave. She said, "well, that still depends on her numbers." Then I realize that she doesn't know we've been released. I told her and she was surprised, "really???" she says. I told her that the doctor told me that we can leave and that she isn't planning on checking her again and that I am concerned about knowing when she can go back to school, if they aren't going to check her counts again. She tells me she'll be back in a few and leaves.

When she comes back in she tells me that she has talked to the case manager, a lady over in oncology. They have scheduled appointments for Friday and Tuesday to have her counts checked. If her counts are good enough on Friday, they'll cancel the Tuesday appointment and Clara can go to school.

Later, after we are home, I am worrying. I don't understand all the conflicting stories and I am feeling unsure about her being home. So after talking to a friend or two about it I decide to call Dr. Whitlock and talk to him. He calls me back pretty quickly and does a nice job of explaining the decision to let CJ come home and the risks that we are still facing. No school, no public places, lots of hand washing and Lysol wipes.

Day Two

Clara Jean is still in the hospital. Her best case scenerio is going home tomorrow. I thought that they were going to check her counts early this morning and tomorrow morning. We were told that if they went up both times that she would be able to go home tomorrow. Well, they didn't check her counts today. I don't know why but I am going to ask the doctor when he comes in.

Clara is feeling OK. Not good, not bad. She isn't really eating and mostly just stares at the TV. She really likes to watch TV, so she is in TV heaven. Non-stop, all the kid channels!

More later...

Unexpected Ups and Downs

Chemo number 6 went off without a hitch. Dr. Whitlock said that Clara Jean is doing well, her counts were good and we were in and out of there in no time. I can't even tell you how excited I was that we were down with our six consecutive treatments and that we were going to have two weeks off. No chemo, no steroids. We had one trip to Vandy planned to have a follow up MRI. Routine, no big deal.

We are still dealing with some side effects. The biggest one being that she is tired and that leads to her being cranky. She isn't staying at school all day. I go pick her up a little early and on most days she crashes when we get home. Her appetite has gone down some and I think that she has already lost some of the weight that she gained. The swelling is starting go down on her face.

So, two weeks off, right?? Umm...not to be. Saturday we went to Holiday World. We had been trying to go all summer but we just couldn't pull it off. So we had the chance on Saturday and we took it. We had a ball! It looks like Della Jane is going to follow in Emma and Clara's footsteps and be a "ride dare devil." Last year Clara wasn't tall enough for the roller coasters but this year she was and she wanted to ride them over and over. After one of the rides Tom told me that, "Clara isn't afraid of anything." And she proved that again, on Sunday night when we had to go to the ER.

So, Sunday Clara was kind of blah. She didn't eat well and she just laid around a lot. Tom and I thought that it was because she was tired from the trip. And we weren't really worried about her eating either. Dr. Whitlock had told us that after she stopped her steroids she wouldn't have an appetite. So we just assumed that was the reason she wasn't eating much. Well, we were wrong. Right before bed I just didn't like the way she was acting, so I told her to take her temp. It was 100.6. No big deal if you are an otherwise healthy child but a big deal if you have a port and you are on medication that suppresses your immune system. I called the on call number and we were told to take her to the ER to have her counts checked and to also check for infection.

When we got to the ER we saw that the waiting room was full of people and I was a little nervous that we would have to wait. As soon as I told them that Clara was a chemo patient they put a mask on her and whisked us back. We were quickly surrounded by people with masks and gowns on. They had IV antibiotics started in about 15 minutes. It was pretty overwhelming. Clara's eyes were huge, but she didn't complain once.

Remember a few weeks ago when Clara couldn't start school because her counts were low. Well when we say counts, in this case, we mean neutrophils. Neutrophils are a vital part of her immune system, fighter cells. Well, when they were low before they were 650. They have to be 750 to have chemo and to be allowed to go to school. Last night, they were 220. At about 2:30 a.m. we were given a room on a floor in the hospital that is sterile. They pipe in their own air. Right now we are just waiting. She continues to get antibiotics. Her fever is down, so that is good news. But the results from the other blood work is not. They are looking for bacteria, either in the form of an infection or bacteria in her line. They also did a flu swab. They will check her neutrophils again this afternoon.

Thanks for all the prayers and offers to help. I have already gotten phone calls and emails from so many people offering to help. I appreciate it more than you can imagine. Please pray for her counts to go up, way up. Please pray for the antibiotics that she is getting will wipe out whatever the problem is. Please pray for us to get some rest. Please pray for Lillie and Emma to feel peace.

LCH on TV

On Saturday at 4 o'clock Discovery Health channel is showing an episode of Mystery Diagnosis. In this episode the little girl has Langerhans cell histiocytosis. Even though I have read everything I can get my hands on, I learned some things from this show. If you get the chance, watch it. It does a great job of capturing what the parents are going through and has some interesting details about the disease itself.

Clara Jean went to school for her second day today, yesterday was her first day. Each day she has only stayed for half the day and each day she has gone right to sleep when we got home. Her teacher, Mrs. Heep, tells me that she is doing well at school. She hasn't been emotional and I think that she really likes doing her work. The summer wasn't exactly filled with intellectual stimulation. Mrs. Heep also emailed to tell me that "The rest of the class just loves having her back. It is just the sweetest thing!!! This truly warms my heart. I have spent some serious time in prayer for Clara and the kids in her class. I have prayed that the kids would be happy to see her and not tease her because she has gained weight or because her hair looks a little funny. I was hopeful that at this age, they wouldn't really notice those things. And it looks like they haven't. Add another item to the list of answered prayers!

Fifth chemo

Clara Jean is an expired license plate police girl!! Every where we go she spots expired license plates. It is crazy. I was so surprised at how many people are out there, driving around, with an expired tag. Her favorite time to look is when we go to Vandy. As we drive through the garage and when we walk to the elevators, she is on the look out. Every week, she sees about five, this week it was more like eight. She gets the biggest kick out of it! This week, CJ wanted to increase her patrol. So, I had to look right and she would look left. She instructed me to look for blue stickers, those are the '09 stickers and then look at the month. If the sticker is orange, there is no need to look at the month, because orange stickers are '10. Oh my, she has a system!

Since CJ's counts were down last week, I was a little nervous waiting on this week's results. So when the nurse came over and said that her counts were "beautiful" I felt so thankful to God for answering our prayers. They administered her chemo and we were on our way.

Since we missed a week and we were on a 6 week plan, we had to add one to the end. So this week should have been week six, but it was really week five. I was really hoping that we would be done with the weekly treatments right after school started but now we have to hang on, just a little longer. I can't tell you how much I am looking forward to our two week break. It feels like I am about to go on a vacation! Right now, CJ gets up to go to the bathroom several times in the night. Sometimes she gets up in the middle of the night to eat. Sometimes she gets up just because she can't sleep. All of this is because of the medicine she is on. I am praying that over the two week break, some of this will decrease and CJ and I will both get some sleep.

Week Five

Today was supposed to be CJ's fifth chemo. It didn't exactly go the way I had expected it to. Every week they do blood work. They have to check her counts to make sure that her immune system is where it should be. Last week one of the nurses actually told me that she doesn't really worry about counts with the drug that Clara Jean is on. Vinblastine just doesn't normally cause any trouble. Well, we aren't exactly normal now, are we??

After they draw the blood they run it through some type of electronic testing machine. If the numbers are borderline then they send it down to a real lab, with real people. That is what happened with Clara Jean today. Her numbers were borderline so her blood was sent to the lab and we waited for the counts to come back. Turns out they were actually worse than the first reading. Don't get me wrong, they weren't awful. They just weren't great. So, no chemo this week. No school this week. (School starts on Thursday.) No McDonald's Play Place this week. (We don't go to McD's every week, but you get the point.) We have to be very careful about the germs CJ is exposed to. The thought is that with a break from the chemo for a week, her numbers will bounce back and next week we'll pick up right where we left off. I was so glad that CJ was going to be almost done with her weekly chemo treatments when school started, but now we may be adding a week.

Speaking of school, Dr. Whitlock told us today that he doesn't see Clara making it even a half-day at school, much less a full day, for a little while. He said maybe a few hours! Oh, it just keeps getting more and more fun.

Today we met a mom and her daughter in the chemo "common area". The mom's name was Robin and the little girl's name was Savannah. Savannah is nine. She has no hair, she is pale and she had a smile on her face pretty much the whole time. Savannah is battling cancer, for the THIRD time! The third time. Wow. She first had cancer when she was five. Right now she does chemo five days in a row and then has a couple of weeks off. I was wondering today how the doctors decide something like that. How do they know how much and how often? I was wondering why some little kids get cancer, some over and over. And some live full, healthy lives? I was wondering why some cancer patients are treated, get well and continue to live full lives and some get sick again. I was wondering why Clara Jean has to go through this. Why does my daughter have to be sick? And why has my daughter been spared? She's sick and she's been spared. It could have been so much worse.

Tonight I have mixed emotions. I am heart broken for Clara. I feel guilty for feeling so sad, when my child is going to live. I feel apprehensive about what is ahead. And then, a smile comes across my tear streaked face. A smile because I know that God is here. He has answered our prayers. He has taken care of us, probably in ways that we don't even realize. Psalm 91:1-2, He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust."

Just over Half-way

(I wrote this last week, but never posted it!)We are in the middle of week four in a six week process. Week four hasn't been fun. The medicine builds up more and more in her system with each day and with each day she becomes more tired. Clara Jean has now gained right at ten pounds. This is because the steroids are causing her to be hungry - ALL THE TIME!!! If I told you what she is eating in one day, you may not believe me! CJ is also retaining water. So her little hands and feet are swollen, as is her face. Her sweet cheeks are all puffed out. Her belly is also bloated, and it is making it somewhat hard for her to breath. Her breathing sounds labored, most of the time. Her hair is thinning a little, but it isn't all that obvious. Almost every afternoon she takes a nap. Today she kept saying, "but I'm not tired!" Then she climbed into my bed and slept for three hours.

School starts next week and I have to tell you, I am pretty nervous about how she'll do. She has been attached to me all summer. I have been the constant in her life. Now, more than ever before she looks to me. Looks to see if I am sad. Looks to see if I am scared. I am her rock. I am the thing that hasn't changed. And to be honest, I am going to have a pretty hard time keeping a smile on my face when I have to leave her at school. Not to mention the constant eating and need for a daily nap. How is she going to do that, at school?

I am hoping that after the six week round of chemo ends, she will start to feel a little more like herself and maybe start to look more like herself again. I just don't know if a two week break will make that much of a difference. After the six weeks are over, she will have a chemo treatment and a week's worth of steroid, every third week. I don't know how she'll feel through that, but I have to think that she'll feel better than she does now.

Side effects

Monday was Clara Jean's third weekly chemo. The process itself isn't that big of a deal. Especially since she knows what to expect now. But it seems like there is always a surprise. Monday it was that Clara has gained 5 pounds since our last chemo, a week ago. The steroids make her hungry and she is eating non-stop. The other surprise was that Dr. Whitlock is back to being worried about the diabetes insipidus. Clara Jean goes to the bathroom all the time. That is one of the big signs. So, they are running more tests and may go back to doing the water deprivation test. UGH!


All week, she has been tired. It seems like she doesn't sleep well the night that she has chemo. And I can hardly keep up with her eating, she wants me to feed her all the time. School starts in a couple of weeks and I am worried. Clara will be almost done with her weekly chemo by then, so hopefully after that she will start to feel better. As much as she is sleeping and as tired as she still gets, I don't know how she is going to make it through the day.

Thursday seems to be her worst day. She is worn out and easily frustrated. I can see it coming on, she gets a very worried look on her face and usually ends up in tears. I am doing a better job of diffusing the situation before it gets out of hand. I guess I have learned what usually works and what doesn't. Sometimes nothing works and I just have to let her cry it out. One of the doctors told me that her reactions to things would be more like a preschooler's than a 2nd grader's, and he was right. I know that a 7 year old isn't at the age were they can truly reason, but her sense of reason seems to be completely gone. The medication and the stress from what she has had to endure has made her scared, clingy and unsure. Life isn't all fun and games anymore, like it should be when you're seven. And like it certainly was for Clara Jean. She didn't have a care in the world, she was a happy, active little girl. Now she is nervous. Now she is worried.

My sweet friend Debbie sent me an email in the last week or so with the verse that she had been praying for Clara Jean. Joshua 1:9 says, "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Clara and I have read and talked about this verse. I can tell you that she absolutely has been strong and courageous. But she has also been afraid. I have been afraid. Our entire family has been afraid. But we are learning. We are doing everything we can to remember the last part of that verse. That God is with us all the time.

Port surgery and chemo pictures.

Nurse Ginger working on CJ's IV. This was right after the surgery and, as you can tell, CJ wasn't feeling that great.

Taking Clara Jean from her port surgery to her first chemotherapy.

There are two small incisions, under the heart bandages, for the port. Under the larger heart, you can kind of make out the bump. That is the port.

The nurse let Clara Jean push some of the meds herself. She thought that this was very cool.

Chemotherapy and side effects

I didn't post anything last week because, truthfully, I just wasn't sure what to say. Chemotherapy is hard. Last week, was hard. The side effects are pretty overwhelming. Clara Jean is exhausted and irritable. She is having a hard time controlling her emotions. Things that aren't really a big deal, are. She gets all bent out of shape and cries, yells, runs and hides. She is starving and eats and eats, then has no appetite.

The steroid is a real pain. It is a tablet that she can't swallow. It dissolves too quickly. After much trial and error we have figured out the best way to get her to take it. I take a medicine cup, you know, the kind that you would give a child a dose of Tylenol in. I put the tablet in it, smash it up with the end of a chop stick and then add a few teaspoons of apple juice. I stir and stir, then let it sit for a few minutes, then stir some more. Once it is all dissolved, I call for Clara. She comes in the room, then realizes why she is there and starts telling me how good she feels and how she doesn't need any medicine. Sometimes she argues with me, sometimes she runs out of the room. CJ ends up holding her drink in one hand and her nose with the other. I pour the medicine in her mouth. We do this twice a day.

That was last week. That was after one treatment. This week has been even more eventful. CJ has been harder to deal with. Her behavior and her emotions have been all over the place. One morning this week she got upset and ended up in my lap crying and yelling the same phrase over and over. I couldn't calm her down. I had to just hold her close and let her get it out. This wasn't the only time that she was this upset. I could tell you story after story. But I think you get the idea.

CJ is also very clingy. She wants me all the time. Yesterday was her follow-up appointment with Dr. Pearson. (He said her incision is healing beautifully.) Tom met us there and then CJ rode home with him. I beat them home by only a few minutes, but when Clara came in she ran into my arms and started crying saying that she missed me so much. I said, "honey, I was just with you at the hospital." And her reply was that that was a long time ago and that she never wanted me to be away from her for that long for the rest of her life!

Summertime!

This summer hasn't been all hospitals and doctor's offices. Check out some of the other things we have done.

We've been swimming!

We've been to the library.

Della Jane turned four!

We went to meet our new cousin Cicily! (And cousin Kelsey, but my camera batteries died before we got there!) Emma can't believe Cicily has all that hair!

My lovely ladies playing poker with Grandpoo!

So, we have been doing our best to have some fun. We are planning a trip to Holiday World soon! Clara Jean is so excited to ride roller coasters. She wasn't tall enough to ride them last year, but she is now! Look for pictures soon.

Port surgery and chemotherapy

Clara Jean had surgery scheduled for 8 to get her port for her chemo and then chemo after. The surgery went well. They put the port on the left side of her body, on her upper chest. It is completely covered and just looks like a bump under her skin. The port itself has a tube that is connected to a vein.

We opted for CJ to have the medicine before the surgery that would calm her down a little. Last time she didn't have it, and she wasn't scared, until after the surgery when she was telling me about how the gas made her feel. So, this time, since she knew what was coming, we thought that the medicine was a good idea. It made her a little loopy and then after the surgery she didn't remember anything. Actually, when she woke up the first thing that she said was, "where am I?" She told us that she didn't even remember rolling down the hallway.

The doctor explained to us that she had two small incisions. One where the put the tube through and one where they put the port in. He also said that they left it "exposed" for the treatment that she was going to have afterward. This means that the port had been accessed during her surgery, the needle was in it and a tube was hanging from it.

Recovery went well. She watched tv and drank some Sprite. Then she had a frozen coke. After we were sure that she felt well and wasn't sick to her stomach, we discharged from there and rolled her upstairs in a wheelchair to oncology. The nurse that called us back had to weigh and measure Clara. When she stood up from the wheelchair she was dizzy and started to get upset. Next thing we knew she was throwing up. Luckily she only threw up the one time and the put us in a small room with a bed for her.

Dr. Whitlock came in and we talked about the plan and the meds she would be taking. Six months of chemo, once a week for six weeks, then every third week after that. She also has to take a steroid, twice a day for four weeks and then tapering off the last two weeks. And an antibiotic two days a week to hopefully keep her from catching an infection. When the six weeks is over she will take 5 days worth of the steroid, the week that she has the chemo. Dr. Whitlock explained the possible side effects and told us which ones that are most likely to occur. Tiredness, wakefulness, irritability, weight gain, minimal hair loss.

The nurse came in and drew blood, so they would have base line counts on CJ. Then came back with three syringes. One with the vinblastine, the chemo drug. One with a medicine that keeps it from clotting and one with saline to flush it threw. That was it. Not too bad, at least the process won't be too hard. I think that it will be the side effects that will be harder to deal with.

More surgery and chemotherapy

This week we have played some phone tag with Dr. Whitlock's office. It is a long story and I don't think that I can even remember how many phone calls and how many different people that I talked to.

I did eventually get someone to tell me that her CT and her bone scan were all clear. No lesions anywhere! No LCH in her body. YAY!

We were planning on seeing Dr. Whitlock again on the 20th. We were waiting that long because we had to wait for the water deprivation test. But since the endocrinologist canceled the water deprivation test, I was hoping that we could see Dr. Whitlock sooner. There were some calls made back and forth so try to settle on a time. Yesterday I was thinking that we had to see him again so we could decide when she was going to start chemo, ask questions about chemo and so on. So when Vandy called this morning, I thought they were calling to set an appointment for this coming week. I was so wrong.

The voice on the other end told me that she was calling to schedule surgery for Clara Jean to have a port for her chemo out into her chest. This is a minor surgery compared to the last surgery she had, but it is still surgery. I was a little caught off guard by the call. I wasn't expecting it to happen so fast. I wasn't expecting it to happen before we saw Dr. Whitlock again.

I sat trying to take it all in. I prayed for strength, for Clara and for me. I cried.

The next call that came was from Dr. Whitlock himself. I was surprised. How often do you get a call from the doctor? The first thing that he said was that he wanted to make sure that I knew that the scans were both clear. He said that he was happy to hear from the endocrinologist that she doesn't have diabetes insipidus. He said that he was ready to move forward with the chemo, as we had talked about at our last appointment. Then, he said that she would have her first round after her surgery on Monday! Um...ok.

Now, I have been saying that I want to just get this going. I have been saying that I want her to start chemo as soon as she can so she can get several weeks out of the way before school starts. I have been saying that the sooner she gets started, the sooner it will be over. But today, I wanted to say, hang on, I'm not ready. I need time.

To be completely honest, I was pretty much a mess all day today. I just could not pull myself together. Everytime I thought about surgery and chemo, I started crying. I got tears in my eyes about a million times today. I would start to pray and just end up in tears. As the day wore on, I decided to just embrace my fears. Embrace my sadness that my daughter is going through this and just be sad.

Trusting God doesn't mean that we don't feel. My feelings, don't mean that I have stopped trusting. They just mean that I am a mom. I ended the afternoon giving my feelings to God. Asking Him to help me feel all the emotions and to keep my trust.

Please continue to pray for us. Please pray for Clara. She is scared. She doesn't understand. Please pray for her surgery to go smoothly and for her to have chemo without side effects. Please pray for Tom and me to continue to have strength, peace and trust. Oh, I could go on and on, but I think you get it.

We don't like needles

Tuesday night Clara Jean had a bit of a meltdown. She was very upset and there were a lot of tears. So much so, that she had me crying right along with her. She kept saying that she didn't like "all the stuff that is happening to me." I could only agree with her. I could only tell her that I didn't like it either. I told her that I didn't understand why she had to go through all of this and that I would take it all away, if I could. I told her that I was going to be right by her side. I told her how proud of her I was and how much I loved her. I reminded her how much God loves her and that He will always be by her side too. She just kept crying.

I asked her several times to talk to me about what she was afraid of, what had her so upset. Her answer every time was that she couldn't talk about it, because it would only make it worse if she talks about it. So I asked her to make a deal with me. I asked her if she would tell me one thing that upset her, in the morning. (It was bedtime.) I told her that she could think about it.

The next morning I asked her if she had thought about it. She said yes and that she wasn't going to tell me anything. I said that it was okay. She burst into tears and started talking 90 miles an hour about how scared of IVs she is. How much they hurt. That she hates them and she never, ever, ever, ever wants to have another one. Well. What could I say to that? Not much. She is going to have to have another IV, possibly several. All I could do was love on her some more and tell her that I understand. That it is OK to be scared.

Pictures

Clara Jean telling her Dad about her IV.

CT scan.


CJ and her Dad, waiting on Dr. Whitlock.


CJ playing with the train in the lobby at Vandy.

July 6, 2009

Clara Jean picked out this new snazzy background for the blog. We had so much fun scrolling through all kinds of backgrounds and trying to decide which one to use. Of course, I kept picking the ones that had pink and Clara kept reminding me that she isn't a "girly-girl".

This morning we left before 7 to go up to Vandy. It was supposed to go like this. At 8, the injection for the bone scan, at 8:30 CT scan, at 9 appointment with endocrinologist and then back to imaging at 11 for the bone scan. Well, everything went in that order, but not quite on time.

The injection for the bone scan was actually putting in an IV and then pushing the radioactive material through the IV. They tried her left arm first. No good. I hate it when they don't get it on the first stick, but keep digging around in there. I know that it hurts. Clara cried and cried. Finally, she decided to move to the other arm. Well, Clara was not cracked up about that. In fact, she screamed her head off. We had to hold her arm down. Then when the nurse told her that her screaming made her vein "pop right out", she started to giggle. The bone scan was later, but I will tell you now that it was uneventful, it went well. We should have the results for the bone scan and the CT scan in a day or two.

The CT scan was fairly uneventful. They used the IV to put in the dye. She laid still, they got the images that they needed and we were on our way. We headed upstairs to see the endocrinologist.

Good news from the endocrinologist! In one of my posts I shared with you that I was pretty shaken by the diabetes insipidus. I have prayed and prayed that she doesn't have it. The endocrinologist is so confident that she doesn't have it, that he canceled the water deprivation test! Praise the Lord!! Now, this doesn't mean that she won't develop it later, we have to be very diligent in watching for the signs, but for now, we're good. She goes back in 6 months.

Prayer works people! God has been so faithful to us through this whole ordeal. When the bump first appeared, we prayed that it wasn't a tumor. We prayed that God didn't take our daughter. He answered. When we found out that she had to have surgery, we prayed for peace for CJ and for ourselves. He answered. Clara wasn't even the least bit afraid. While CJ was in surgery, we prayed for success, for removal of the tumor and no complications. He answered. I could keep going, but I think you get the point! God is good.

Pictures

This is all of my girls at the hospital the morning after CJ's surgery. This is the only picture she let me take and as you can see, she wasn't very happy about it.

Here is one of her right after the surgery.

Right before they wheeled her back, Dr. Luke, initialed her "bump". When he leaned over her with his sharpie, she pulled away, looked him straight in the eye and said, "boys have cooties!"

This is Clara Jean before surgery hugging her new favorite stuffed animal, Hophop.

A favor

If you read this blog on a regular, or fairly regular basis, could you please become a follower?? I think it is easy to do and it will help me keep track of who knows what is going on and who doesn't. Even if you don't know us or know us very well, I would appreciate it.

Also, please feel free to post/ask me questions on here and I will do my best to answer them. I sometimes forget to include things that some of you ask me in person later. Usually I get asked the same questions, so if you ask them on here, then I can answer everyone at once.

Thanks, so much.

Our visit to see Dr. Whitlock

Today we went to see Dr. Whitlock at Vandy Children's. And let me tell you...what a guy. Tom and I both felt so blessed to have this man right down the road. He is a leading expert in LCH and so kind and humble. We were extremely impressed by his knowledge and kindness.

We learned a lot today about the next steps in the treatment process. Bear with me, there is a lot of info and I want to share it all. Please feel free to post questions, if you have them.

One of the things that sent sort of sent me reeling was that the x-ray series that CJ had that showed no lesions, isn't really the best test for this type of lesion and so she has to have an honest to goodness bone scan. She also has to have a CT of her lungs and abdomen. I have been thinking two things to be true, that are/could be false. The first one being that her bones are clear. Her bones may be clear, but we have to have the "real" bone scan to be sure. The second thing that I was walking around believing to be true is that LCH attacks either your bones or your organs, but not both. Now, at this point I am thinking that I must have made that up!! I have no idea why I thought that, but it just isn't true. So the CT scan will show us if CJ has any lesions on her lungs or on another organ in her abdomen. (If she did have one in her abdomen it would more than likely be on her liver.)

I know that you know what a CT scan is. Let me tell you about the bone scan. I believe it to be nuclear medicine. I had one several years ago when Dr. Mangrum first discovered the damage to the joints in my hips. They injected me with a radioactive material and then scanned my body with a big camera attached to a swinging arm. It wasn't very much fun, but wasn't that big of a deal either.

The other thing that I wasn't expecting today was the scheduling of a water deprivation test. I think I have mentioned that some people who have LCH also get a rare form of diabetes. We all think of diabetes as having something to do with blood sugar and insulin, but that isn't always the case. Diabetes simply means "any of several disorders characterized by increased urine production". In this case the type of diabetes we are talking about is called diabetes insipidus and it has nothing to do with blood sugar, it is all about the way the body regulates fluid. With DI the hormone that the brain releases to regulate fluid, isn't released correctly or at all. When you start to become dehydrated, your body releases a hormone telling your kidneys to "shut off the tap". This way your body hangs on to the extra fluid to protect your organs. For people that have DI, the "tap" doesn't "shut off" when it should. You know when you get the flu and you don't go to the bathroom very much?? That is because your body is storing fluid. A person with DI may continue to go to the bathroom, even though they need the fluid and can become deathly dehydrated, very quickly. Some patients that have LCH also develop DI. Usually chemo keeps it away. Here is the kicker, Dr. Whitlock thinks that CJ may already have DI. That is why he scheduled the water deprivation test, it will tell us if she does.

OK, it isn't the end of the world if she does. Yes, it is a lifelong disease, but it can be treated and treated effectively. Right?? Well, this is what Tom keeps telling me. To be honest, I am not feeling that positive about it. It was devastating news for me. A lifelong disease, on top of the LCH...I just haven't been able to put that in it's place yet.

Monday the 6th, CJ will have the bone scan and the CT scan. Monday the 13th, she will have the water deprivation test and Monday the 20th we go back to Dr. Whitlock to find out when we start chemo. Yes, the chemo is a go. There is no question at this point. The only question that is left concerning the chemo is how high her dose will be. That will be determined by the results of the scans. At this point it looks like 6 months of chemo, once a week for 6 weeks and every 2 or 3 weeks after that. Dr. Whitlock tells us that it will be such a low dose that her side effects will be minimal to none. She may lose a little hair and may be a little tired. He said that probably she would go to school for half the day, come in have her chemo, go home to take a nap and be fine the next day. Amazing.

That is all for now. Over the next few days I am going to post some sweet pictures and stories about some incredible kindness and love that we have encountered throughout this process, so please check back.

Bone Scan Results

Today my friends, we are praising God!! The bone scan showed that her bones are clear. No more masses and no lesions either! All of CJ's bones look perfect. (With the exception of the hole that she has in her skull from the mass that was removed.) Wow. All I can say is that God does answer our prayers.

What does this mean? What does it not mean? It means that she is tumor free, but it doesn't mean that she always will be. It doesn't mean that she won't have to have chemo. We won't know that until we see the oncologist. It does mean that if she has chemo, it will be a low dose. Having chemo at this point will decrease the chances of a recurrence. It will also decrease the chance of Clara Jean developing a rare form of diabetes that is a "side effect" from LCH. We'll just have to wait and see what the oncologist says.

Thanks, again, for your continued prayers and support. My family has been truly blessed by so many people "loving on" us.

Bone Scan

This afternoon we made our way back to Vandy so Clara Jean could have a full-body bone scan. In her case, they just took x-rays of every bone in her body. When we were walking in from the parking garage, CJ started to cry. She didn't want to go back to the hospital. What if something is wrong and she has to stay? What if they have to "put in an IV" or "take more of her blood out?" I assured her that she wasn't going to have to stay, but I wasn't sure what they were going to do in imaging, so I couldn't make her any promises.

I have made sure that I really pay attention to what I say to her. I can't tell her that she isn't going to have to have surgery again. I can't tell her that she won't have another IV. I can't tell her that she won't have to spend another night in the hospital. I don't know. But what I do know, without a doubt, is that God is on our side. He is in our corner. He is for us, for Clara Jean. After all, He loves her even more than I do. And I know that no matter what comes next, the truth in what I know, won't change.

She was a champ in the x-ray lab. She laid perfectly still ( I know, still amazing!) and they didn't even have to redo one x-ray. These x-rays will tell us if there are anymore tumors somewhere else in her body. It hit me today, as I sat and watched, that that is a possibility. Of course, I already knew that it was, but I guess I just hadn't fully processed what that means.

My prayer today, and until we get these results, is that the x-rays are clean. No tumors. No signs of a tumor. Please join me in praying that she is tumor free.

Underestimation

Today I joined the Histiocytosis Association of America. And I cried. It makes it so real. I think that because LCH was our best case scenario that we underestimated the disease. Before the official prognosis I had only done a small amount of research. You know how it is. You go online and you see all sorts of horror stories and you scare yourself to death. I wasn't going to do that. I didn't allow myself to dig very deep, before we knew for sure. Well, now we know and I have done some digging. While I am so happy that the tumor wasn't cancer, there isn't much relief in knowing that my daughter has this disease. It is not a disease to take lightly and it very well may be something that she deals with for the rest of her life.

In just under two weeks we go to the oncologist and I am expecting him to treat CJ with chemo. From all of the reading I have done, I just am expecting it. I have focused my online research on blogs that parents just like me, created to share their stories with their families and friends. Most of these stories, include chemo. And I am having a very hard time wrapping my head around this. I think that I had a false sense of being done, after the surgery. The tumor was gone, we came home, it's all good...right? Hmm, not so much.

Pathology

Today, we got the pathology report. It is LCH, or Langerhans cell histiocytosis, which is what Dr. Pearson thought that it was. The next step is to have a series of scans and to go see an oncologist. At this point, I have no idea what the oncologist will do. I am assuming that they will do a full body bone scan, as Dr. Pearson predicted, to make sure that there aren't any masses hiding somewhere else in her body. I think that the result of this scan will determine if she has to have chemo or radiation. Although I am not positive that they won't do that anyway since the tumor was so big and it came on so quickly.

We are going to see Dr. Whitlock at Vandy. He is a leading specialist in his field. He actually specializes in LCH. When I read his bio on the website I was very pleased to see that,
"His clinical interests include the biology and treatment of acute lymphocytic leukemia and acute nonlymphocytic leukemia, the biology and treatment of Langerhans cell histiocytosis and other forms of histiocytosis."

Please continue to pray for her. I just have this feeling that we aren't over the hump yet. I can't really describe it. I feel confident that Clara will recover 100% from this. I am not up at night worrying that she won't. It is like God is whispering to me. He is saying, "I've got this, just keep holding on." It is like I know that there is more to deal with...but at some point, it will be over. Behind us. Just a memory. A story to tell.

(Wow, I just spell checked, it doesn't even recognize histiocytosis!)