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.