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.
Tuesday, June 30, 2009
Monday, June 29, 2009
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.
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.
Monday, June 22, 2009
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.
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.
Thursday, June 18, 2009
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.
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.
Wednesday, June 17, 2009
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.
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.
Friday, June 12, 2009
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!)
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!)
Emotional
Clara is having a hard time. She is tired and in pain, but really doesn't want to be. She has been having these outbursts and they can get really out of control. Sometimes it is the littlest thing that sets it off, sometimes it is something that really shouldn't upset her at all. One minute she will be fine and then next she will be stomping her feet, yelling and crying.
Tom called Dr. Pearson's office and they told us that she is probably in more pain than we realize and that she doesn't really understand it either. We had been giving her the Tylenol with codeine at night and regular Tylenol during the day, but Dr. Pearson's nurse said to give her the codeine all the time and see if that helped. It did, but only a little.
We have also been told that brain trauma and/or swelling of the brain can cause this and that it can take somewhere up to three months to go away. Wow. Three months. That seems like forever considering that I don't really know what to do with her when she gets that way. I think that I have been handling it pretty well. I just love on her and sometimes we pray. But sometimes I just want to spank her and send her to her room!! I have talked to Lillie and Emma about it and they have been pretty good with her. But Della isn't even four yet and she doesn't get it at all. In fact, if Della is in the room and CJ starts yelling at her or at one of the other girls, Della just gives it right back to her. I am in constant prayer about this and am trying to not get discouraged. God has been so faithful in answering prayer through this, I know that He hasn't left us.
Tom called Dr. Pearson's office and they told us that she is probably in more pain than we realize and that she doesn't really understand it either. We had been giving her the Tylenol with codeine at night and regular Tylenol during the day, but Dr. Pearson's nurse said to give her the codeine all the time and see if that helped. It did, but only a little.
We have also been told that brain trauma and/or swelling of the brain can cause this and that it can take somewhere up to three months to go away. Wow. Three months. That seems like forever considering that I don't really know what to do with her when she gets that way. I think that I have been handling it pretty well. I just love on her and sometimes we pray. But sometimes I just want to spank her and send her to her room!! I have talked to Lillie and Emma about it and they have been pretty good with her. But Della isn't even four yet and she doesn't get it at all. In fact, if Della is in the room and CJ starts yelling at her or at one of the other girls, Della just gives it right back to her. I am in constant prayer about this and am trying to not get discouraged. God has been so faithful in answering prayer through this, I know that He hasn't left us.
What a week!
The past week has been long, tiring, emotional, joyful...the list goes on and on. I am exhausted. I think that I am sleeping plenty but I just don't feel rested. This week was VBS at our church. Monday morning I left Clara and Della with my mom, I dropped Lillie and Emma off at VBS and just ran some errands. Tuesday morning, and every morning after, we all went. I was able to stay with Clara and take breaks as needed. Once or twice each day we would wander off and find our way to a board game or a snack and just relax.
I want to take a minute to tell you about our VBS experience. My kids have always gone to VBS and sometimes more than one over the summer. You know, one of their friends invites them to their VBS and they love to go. This is our 3rd VBS at The People's Church. This year, when I saw that VBS fell the week after Clara's surgery, I was worried that she wouldn't be up to it and that she would be so disappointed. I was partially right, she wasn't 100% up to it, but I was there to take her off to chill out whenever she needed it. I know that I have already said over and over that I have been so blessed, overwhelmed even, by the outpouring of love that has come to our family because of this trial. And being at VBS showed it even more. I can't tell you how many people were happy to see Clara. I can't tell you how many people told us they had been praying. So many people asking how we're doing and offering to help. But all those people weren't what made the biggest impact on me this week. It was all those kids. Between 800-900 kids singing, lifting up their little arms and praising God. It had me in tears. How is it all those kids can sing and praise the Lord and not be worrying about what the person next to them thinks? But adults on Sunday morning can't? Why are we so worried about expressing how much we love God? Why is it that we are thinking about the other people in the room instead of The One that we are singing for? And the words. When I heard them singing, "I will obey every day and trust Him to take care of me" it really hit me. What an opportunity to teach Clara, to trust.
I want to take a minute to tell you about our VBS experience. My kids have always gone to VBS and sometimes more than one over the summer. You know, one of their friends invites them to their VBS and they love to go. This is our 3rd VBS at The People's Church. This year, when I saw that VBS fell the week after Clara's surgery, I was worried that she wouldn't be up to it and that she would be so disappointed. I was partially right, she wasn't 100% up to it, but I was there to take her off to chill out whenever she needed it. I know that I have already said over and over that I have been so blessed, overwhelmed even, by the outpouring of love that has come to our family because of this trial. And being at VBS showed it even more. I can't tell you how many people were happy to see Clara. I can't tell you how many people told us they had been praying. So many people asking how we're doing and offering to help. But all those people weren't what made the biggest impact on me this week. It was all those kids. Between 800-900 kids singing, lifting up their little arms and praising God. It had me in tears. How is it all those kids can sing and praise the Lord and not be worrying about what the person next to them thinks? But adults on Sunday morning can't? Why are we so worried about expressing how much we love God? Why is it that we are thinking about the other people in the room instead of The One that we are singing for? And the words. When I heard them singing, "I will obey every day and trust Him to take care of me" it really hit me. What an opportunity to teach Clara, to trust.
Saturday, June 6, 2009
June 6, 2009
Today went well. I think that everyone slept pretty well last night and CJ was feeling even better. I love to see her smile.
She and I napped together again today. I feel worse today. I am so tired and I have cried a few times. I keep thinking that all I should be feeling is joy. I mean, my baby girl just had brain surgery and is at home recovering beautifully. The docs are 98-99% sure that the tumor is benign. This is all great news. And yet, I just feel blue. Like right after you give birth.
This evening CJ was much better than she was last night. She was smiling and up running around. Running around to the point that I had to make her stop. This evening I was able to wash her hair and wash her incision with baby shampoo. She didn't like it very much, but was a trooper. I think that after she was all clean, she felt better. No more goop in her hair has to feel good.
At dinner, the girls were arguing a little about who should get to sit next to Grandmoo (Tom's mom). Clara Jean said, "How about the girl who just had surgery gets to pick." Hmm...I think she is starting to feel like herself again.
She and I napped together again today. I feel worse today. I am so tired and I have cried a few times. I keep thinking that all I should be feeling is joy. I mean, my baby girl just had brain surgery and is at home recovering beautifully. The docs are 98-99% sure that the tumor is benign. This is all great news. And yet, I just feel blue. Like right after you give birth.
This evening CJ was much better than she was last night. She was smiling and up running around. Running around to the point that I had to make her stop. This evening I was able to wash her hair and wash her incision with baby shampoo. She didn't like it very much, but was a trooper. I think that after she was all clean, she felt better. No more goop in her hair has to feel good.
At dinner, the girls were arguing a little about who should get to sit next to Grandmoo (Tom's mom). Clara Jean said, "How about the girl who just had surgery gets to pick." Hmm...I think she is starting to feel like herself again.
June 5, 2009
The girls and I got to the hospital around 10. CJ was sitting up in bed watching tv and chatting with her visitors. My grandma, her husband Charlie, my aunt Carrie, my sister Kylie and my mom were all there. (It is so nice to be surrounded by family in times like this.) Tom told me that we were going to be discharged soon! I was so excited! I thought that we would be there all day but the doc had already been in and said that she looked great and that we could go home after breakfast. And that is exactly what we did. I think that I smiled all the way home. We stopped to get some lunch and CJ ate and ate. That made me happy.
When we got home CJ and I laid down together and took a much needed nap. She was still trying to protest that she wasn't tired as her eyelids fell.
In the evening Tom's mom arrived and Coach Todd, Beverly, Joy and Jeff came by. CJ was happy to see them, but was still so worn out.
We had to wash her incision again before bed. Again, she cried. And again, so did I. It is so hard to see your child in pain. It is so hard to watch them cry and not be able to fix it. For two days we had to wash it with water/peroxide and put ointment on it, and I knew that this was the last time for that. Knowing that made it a little easier.
The other thing that she was complaining about was her right eye. It was so swollen and red. The doc had told us that she may end up with a black eye, but I wasn't prepared for how swollen it was. We put ice on it and she feel asleep. Her whole head is still pretty swollen. She doesn't like that very much. She was feel ingwhere the "bump" was when we were still at the hospital and it still feels like it is there. She asked me why she still had a bump and said, "I thought they were going to take the bump out! What are we even doing here??"
When we got home CJ and I laid down together and took a much needed nap. She was still trying to protest that she wasn't tired as her eyelids fell.
In the evening Tom's mom arrived and Coach Todd, Beverly, Joy and Jeff came by. CJ was happy to see them, but was still so worn out.
We had to wash her incision again before bed. Again, she cried. And again, so did I. It is so hard to see your child in pain. It is so hard to watch them cry and not be able to fix it. For two days we had to wash it with water/peroxide and put ointment on it, and I knew that this was the last time for that. Knowing that made it a little easier.
The other thing that she was complaining about was her right eye. It was so swollen and red. The doc had told us that she may end up with a black eye, but I wasn't prepared for how swollen it was. We put ice on it and she feel asleep. Her whole head is still pretty swollen. She doesn't like that very much. She was feel ingwhere the "bump" was when we were still at the hospital and it still feels like it is there. She asked me why she still had a bump and said, "I thought they were going to take the bump out! What are we even doing here??"
June 4, 2009
As you can imagine, the past few days have been a bit of a blur. It seems like so much has happened in the past few days! I will start with the surgery news, sorry if I am repeating myself. When Dr. Pearson came out after the surgery he told us that the tumor had infiltrated more of her muscle and more of her skull than they had anticipated. He said it was just a bunch of goo and that he had to scrape quite a bit out of her muscle and that they removed a good amount of her skull that had been "infected". Most of the skull will grow back on its own. He also said that after the pathology comes back (7-10 days) that he will decide the next step. If it is LCH they may send us to an oncologist to do a full body bone scan. If they find anymore masses she may have to have treatment that is similar to cancer treatment, but in very small doses. If it isn't LCH, well...I don't know.
We were in recovery all day. From about 10:45-7:30. CJ just could not get past the upset stomach. The first few hours they were concerned about her vomiting and the pressure that it would put on her incision. So they gave her a few different types of meds, trying to keep her from throwing up. It was successful, for a while. She ended up throwing up, but it was pretty late in the day and it had been long enough that they weren't too worried about her incision anymore. CJ wasn't complaining of any pain. She wasn't crying. She wasn't whining or fussing. She was just lying there, sometimes sleeping, sometimes not. That girl barely let out a whimper all day.
After we finally got a room the nurse upstairs washed her incision and while she was doing that, Clara Jean cried. (And so did I.) It was almost 9 o'clock at night, she was exhausted and I think that her pain meds were wearing off a little. But once we got through that, she was fine and ready to sleep. She kept telling Tom that she wasn't tired and that she wanted to watch tv. But the lights had only been out about 2 minutes and she was out. Tom stayed at the hospital and I came home. It was really hard for me to leave. But I knew that I would be better for CJ the next day if I got some sleep. I also wanted to bring Lillie, Emma and Della up to the hospital in the morning, so my being at home made that easier.
We were in recovery all day. From about 10:45-7:30. CJ just could not get past the upset stomach. The first few hours they were concerned about her vomiting and the pressure that it would put on her incision. So they gave her a few different types of meds, trying to keep her from throwing up. It was successful, for a while. She ended up throwing up, but it was pretty late in the day and it had been long enough that they weren't too worried about her incision anymore. CJ wasn't complaining of any pain. She wasn't crying. She wasn't whining or fussing. She was just lying there, sometimes sleeping, sometimes not. That girl barely let out a whimper all day.
After we finally got a room the nurse upstairs washed her incision and while she was doing that, Clara Jean cried. (And so did I.) It was almost 9 o'clock at night, she was exhausted and I think that her pain meds were wearing off a little. But once we got through that, she was fine and ready to sleep. She kept telling Tom that she wasn't tired and that she wanted to watch tv. But the lights had only been out about 2 minutes and she was out. Tom stayed at the hospital and I came home. It was really hard for me to leave. But I knew that I would be better for CJ the next day if I got some sleep. I also wanted to bring Lillie, Emma and Della up to the hospital in the morning, so my being at home made that easier.
Friday, June 5, 2009
Hmm...
Hot sure why yesterday's post that I wrote right after we talked to the surgeon isn't showing up?? It is on the side, so you can click on "after the surgery" and see it, but it isn't showing up on it's own. Wierd.
More later...
More later...
Thursday, June 4, 2009
After surgery
Dr. Pearson came out and told us that he is now 98-99% sure that it is LCH. He said that the surgery went well and that he got it all out. He did have to remove some of her skull, but she won't have any repercussions from that. She is resting in recovery and we are waiting for a room.
June 4, 2009
We got up at 3:45 this morning so we could leave for the hospital at 4:40. We were supposed to be here at 5:30 and we were right on time. But the admission people were not. No one was here. The lights weren't even all the way up! They arrived shortly after and we registered and waited. Clara Jean was a little would up, but seemed to be doing pretty well. They took us back at about 6:30, took her vitals and talked to us, again, about what they planned to do.
We met the anesthesiologist, the nurses and we talked to the surgical resident again. Then Dr. Pearson came in and talked to us some more. We really like him. Clara Jean picked watermelon for her "smelly medicine" and seemed to be looking forward to it. When they wheeled her down the hall she was chit-chatting with the nurses. I only cried a little. Clara Jean is so brave and I am so proud, so blessed to be her mom.
Coach Todd brought us McDonald's for breakfast and we headed down to the cafeteria. Todd, Tom, my dad, Lorri and I had just sat down and started to eat when we looked up and saw Dr. Pearson coming out of the faculty lounge with a cup of coffee! Now, I don't know about you, but when my daughter is in having brain surgery, I would like the surgeon to be on the room! He was headed upstairs, so that eased our minds. I guess even a brain surgeon needs their coffee before they start working.
Thanks for your contined prayers and all of your support. I would not be able to be sitting here typing if I didn't have God's perfect peace right now. I don't know how people get through life without God, much less hard times like the one we are going through now. I would be curled up on the floor, a complete mess, right now, if I didn't have God.
We met the anesthesiologist, the nurses and we talked to the surgical resident again. Then Dr. Pearson came in and talked to us some more. We really like him. Clara Jean picked watermelon for her "smelly medicine" and seemed to be looking forward to it. When they wheeled her down the hall she was chit-chatting with the nurses. I only cried a little. Clara Jean is so brave and I am so proud, so blessed to be her mom.
Coach Todd brought us McDonald's for breakfast and we headed down to the cafeteria. Todd, Tom, my dad, Lorri and I had just sat down and started to eat when we looked up and saw Dr. Pearson coming out of the faculty lounge with a cup of coffee! Now, I don't know about you, but when my daughter is in having brain surgery, I would like the surgeon to be on the room! He was headed upstairs, so that eased our minds. I guess even a brain surgeon needs their coffee before they start working.
Thanks for your contined prayers and all of your support. I would not be able to be sitting here typing if I didn't have God's perfect peace right now. I don't know how people get through life without God, much less hard times like the one we are going through now. I would be curled up on the floor, a complete mess, right now, if I didn't have God.
Wednesday, June 3, 2009
June 2, 2009
This morning I left my girls with my mom and went to meet with the wonderful ladies in my bible study. I have been so blessed by these women over the past year or so and even more so since Clara Jean's "bump" appeared. We caught up, talked about CJ, prayed for CJ, our family, CJ's doctors and more. I left feeling peaceful.
I left and headed to Costco to buy snacks to take to the hospital. I talked to Tom on the way and he said, "You cried like a baby, didn't you?" No, I didn't. I didn't feel the urge, need, whatever, I didn't feel it. I felt God's perfect peace. I felt His arms around me. I felt...fine. Well, let me tell you! I think that because this is a high stress situation, like it or not, sometimes our emotions get the best of us.
I was in a snack aisle looking at granola bars when I wave of emotion came over me. I was in this aisle, all alone, it seemed so quiet and I suddenly felt like I was drowning. Do you know how many different kinds of granola bars they have at Costco??? Seriously? Was I crying because I didn't know what kind of granola bars to buy? I called Tom, crying. "What kind of granola bars do you want? Do you want the chewy ones? The girls don't like the peanut butter and chocolate. Or do you want crunchy? Do the girls like crunchy? I can't remember, why can't I remember what kind of granola bars my kids like?"
Now, I have to tell you. My husband was a champ. He talked me down calmly and quietly. He told me which kind to buy and didn't seem irritated in the least bit that I had just called him at work to ask him about granola bars. He helped me see what I was really crying about and we talked about it. He was amazing. I don't know what it was that made me, at that moment, freak out a little. Maybe it was the fact that I was buying snacks for the hospital. That makes it pretty darn real. Maybe it was the fact that I felt like I could feel the minutes ticking away, taking us closer and closer. Maybe it was the fact that sometimes, we just need to cry. I don't know. But I can tell you that after I was done with my cry and I composed myself, I was back to feeling good. Strong. Peaceful.
I left and headed to Costco to buy snacks to take to the hospital. I talked to Tom on the way and he said, "You cried like a baby, didn't you?" No, I didn't. I didn't feel the urge, need, whatever, I didn't feel it. I felt God's perfect peace. I felt His arms around me. I felt...fine. Well, let me tell you! I think that because this is a high stress situation, like it or not, sometimes our emotions get the best of us.
I was in a snack aisle looking at granola bars when I wave of emotion came over me. I was in this aisle, all alone, it seemed so quiet and I suddenly felt like I was drowning. Do you know how many different kinds of granola bars they have at Costco??? Seriously? Was I crying because I didn't know what kind of granola bars to buy? I called Tom, crying. "What kind of granola bars do you want? Do you want the chewy ones? The girls don't like the peanut butter and chocolate. Or do you want crunchy? Do the girls like crunchy? I can't remember, why can't I remember what kind of granola bars my kids like?"
Now, I have to tell you. My husband was a champ. He talked me down calmly and quietly. He told me which kind to buy and didn't seem irritated in the least bit that I had just called him at work to ask him about granola bars. He helped me see what I was really crying about and we talked about it. He was amazing. I don't know what it was that made me, at that moment, freak out a little. Maybe it was the fact that I was buying snacks for the hospital. That makes it pretty darn real. Maybe it was the fact that I felt like I could feel the minutes ticking away, taking us closer and closer. Maybe it was the fact that sometimes, we just need to cry. I don't know. But I can tell you that after I was done with my cry and I composed myself, I was back to feeling good. Strong. Peaceful.
Monday, June 1, 2009
Tooth Fairy
I am wondering how much money the Tooth Fairy would bring to a child that has just woken up from brain surgery and lost two teeth while she was asleep??? CJ has two teeth that are about to fall out. Breathing tubes and loose teeth do not mix. So, those teeth will be pulled out after she is under! The nurse told CJ to remember that the Tooth Fairy always knows where kids are, even the hospital. I guess the Tooth Fairy better hit the atm. I am thinking that this is going to be a big one!
June 1, 2009
Today we went to see the neurosurgeon, Dr. Pearson. He examined her, showed us her CT and MRI scans and told us what he thinks. Dr. Pearson is 90% sure that Clara Jean has a rare disease call Langerhans Cell Histiocytosis or LCH. LCH is a very rare and very strange disease. It usually starts in the bone and leaves organs alone. It is usually only in one spot, but can be on other spots throughout the body. And it usually doesn't come back, after it is "delt with", but it can. It is similar to an autoimmune disease and is sometimes treated with radiation and/or chemotherapy. Here is the weirdest part. Usually if you "irritate" it, it will go away. For example, sometimes the doc will just biopsy it and it will go away.
So, what does this mean for CJ. Well, they are going to go ahead and remove it on Thursday. If it is in fact LCH, they will order a full body bone scan just to be sure that she doesn't have it anywhere else. If she doesn't, they will do follow up scans over the next couple of years to make sure that it hasn't returned. If they do the bone scan and do find that other places in her body have been infected, she will have to go through some treatments similar to cancer treatments and possibly more surgery.
Now, Dr. Pearson said when he gets a look at it, he will have an even better idea of what it is. He will know if he was wrong and it doesn't look anything like LCH. Or he will know that he may be right and it does look like it. But, we still have to wait for pathology to know for sure. Dr. Pearson said with this case that it may take up to 10 days to get pathology back.
Dr. Pearson showed us on the scan where the tumor is irritating the covering of CJ's brain. He also showed us that there is a lot of inflammation around the sight and he said that he was surprised that it didn't hurt when she chewed. He showed us where the hole is in her skull. Dr. P said that he is going to check the outside of her brain to make sure that it is only irritation. He also told us that the skull may or may not heal itself. I was afraid that it would cause long term problems, but he said that it wasn't an issue.
Tom and I are feeling pretty positive about this. The surgery should only take two hours and CJ should only have to stay one night. They aren't going to shave her head, only cut it a little. Dr. Pearson said that it probably won't be noticable!
Tom was saying last night that he wished he knew how many people are praying for Clara and our family. It is so overwhelming to know that quite possibly tens of thousands of people. I think that we are on prayer lists at churches all over Middle TN. We are on prayer lists at churches in at least 6 states! We have received emails and even gift from people that we don't even know! We are praising God and thanking God all the time for keeping CJ close to Him and for putting people in our lives that care so much! Thank you. Thank you. Thank you.
So, what does this mean for CJ. Well, they are going to go ahead and remove it on Thursday. If it is in fact LCH, they will order a full body bone scan just to be sure that she doesn't have it anywhere else. If she doesn't, they will do follow up scans over the next couple of years to make sure that it hasn't returned. If they do the bone scan and do find that other places in her body have been infected, she will have to go through some treatments similar to cancer treatments and possibly more surgery.
Now, Dr. Pearson said when he gets a look at it, he will have an even better idea of what it is. He will know if he was wrong and it doesn't look anything like LCH. Or he will know that he may be right and it does look like it. But, we still have to wait for pathology to know for sure. Dr. Pearson said with this case that it may take up to 10 days to get pathology back.
Dr. Pearson showed us on the scan where the tumor is irritating the covering of CJ's brain. He also showed us that there is a lot of inflammation around the sight and he said that he was surprised that it didn't hurt when she chewed. He showed us where the hole is in her skull. Dr. P said that he is going to check the outside of her brain to make sure that it is only irritation. He also told us that the skull may or may not heal itself. I was afraid that it would cause long term problems, but he said that it wasn't an issue.
Tom and I are feeling pretty positive about this. The surgery should only take two hours and CJ should only have to stay one night. They aren't going to shave her head, only cut it a little. Dr. Pearson said that it probably won't be noticable!
Tom was saying last night that he wished he knew how many people are praying for Clara and our family. It is so overwhelming to know that quite possibly tens of thousands of people. I think that we are on prayer lists at churches all over Middle TN. We are on prayer lists at churches in at least 6 states! We have received emails and even gift from people that we don't even know! We are praising God and thanking God all the time for keeping CJ close to Him and for putting people in our lives that care so much! Thank you. Thank you. Thank you.
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