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.