(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.
Monday, December 28, 2009
Monday, December 7, 2009
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.
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.
Wednesday, November 11, 2009
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.
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.
Wednesday, November 4, 2009
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.
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.
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.Sunday, November 1, 2009
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.
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.
Wednesday, October 21, 2009
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.
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."
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."
Friday, October 9, 2009
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.
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.
Tuesday, September 29, 2009
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.
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.
Saturday, September 12, 2009
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!
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!
Wednesday, September 9, 2009
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.
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.
Sunday, September 6, 2009
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.
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.
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.
Friday, September 4, 2009
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.
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.
Tuesday, September 1, 2009
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...
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...
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