We all hear not to take life for granted. We all hear that our lives can be changed in a split second, in a minute, over an hour, over a day. But right now, what is on my mind, is one week. One week ago, today, my life changed. One week ago today, Dr. Mangrum called me to tell me that my precious 7 year old, my baby, had a tumor on her brain. One week ago today, we went to Vandy's ER, not knowing if they would rush her to surgery, admit her, send her home...we just didn't know. One week ago today, we found out that the tumor had not penetrated her brain, and we praised God.
Now, here I sit looking ahead, one week. One week from today, Tom and I will get up while it is still dark outside. We will wake CJ up and take her back to Vandy. One week from today, my little girl will be prepped, given meds to make her sleep, have the side of her head shaved. One week from today, my little girl will have surgery on her brain. One week from today, our lives will change again.
A lot can happen in a week.
I cannot even begin to explain the way that I feel right now. The way that I feel when I look at Clara Jean. They way that I feel when I get another email or another phone call from someone telling me that they are praying for us. Asking me what they can do to help. I can tell you that I feel God's arms around my family. I feel His presence. I feel protected and safe. I am scared. I don't want my daughter to have to go through this. But "If God is for us, who can be against us?" - Romans 8:31.
Thursday, May 28, 2009
Wednesday, May 27, 2009
Bald Barbie Dolls
Let me start with some history. When we were at Vandy last week and CJ was about to have her MRI, she was scared. Something very cool happened. They brought in a doll to be CJ's patient. She was able to put an IV in her arm and make a "plan" for the doll that would help her not be scared of the IV. This exercise was very good for Clara. She really soaked it up and when it was time for the IV, she started to protest and then she said, "Oh, I remember, I have a plan."
Yesterday morning, CJ and Emma were playing in Emma and Lillie's room. I stuck my head in to check on them and found them playing Barbies. CJ was cutting off the Barbie's hair. I wasn't sure what to think about it. I mean, kids do that kind of stuff, right? Was it a coincidence that Clara was going to have to have her hair shaved for the surgery? I hadn't told her yet, but she is a smart little girl and the tumor is mostly under her hair.
Later, Emma told me that Clara knew. It broke my heart. My baby is going to have to endure so much. Then I remembered the doll from the ER. Clara had too. Somewhere inside Clara Jean knew that the doll had helped her deal with her fears and she used that to deal with the fear of having her head shaved. I think that she is smarter than I am! I am already amazed at her strength and her courage. She is amazing.
Yesterday morning, CJ and Emma were playing in Emma and Lillie's room. I stuck my head in to check on them and found them playing Barbies. CJ was cutting off the Barbie's hair. I wasn't sure what to think about it. I mean, kids do that kind of stuff, right? Was it a coincidence that Clara was going to have to have her hair shaved for the surgery? I hadn't told her yet, but she is a smart little girl and the tumor is mostly under her hair.
Later, Emma told me that Clara knew. It broke my heart. My baby is going to have to endure so much. Then I remembered the doll from the ER. Clara had too. Somewhere inside Clara Jean knew that the doll had helped her deal with her fears and she used that to deal with the fear of having her head shaved. I think that she is smarter than I am! I am already amazed at her strength and her courage. She is amazing.
Tuesday, May 26, 2009
Tuesday, May 26
Today I spoke with Dr. Pearson's (the neurosurgeon) nurse and Dr. Mangrum. They both told me some things that we consider good news. First, Dr. Mangrum told me that he saw the MRI and that the tumor didn't have any malignant indicators! Praise the Lord! Dr. Pearson's nurse told me that the surgery is scheduled to be only an hour or so long and that if all goes as planned CJ will only have to spend one night in the hospital...amazing. She also told me that we could let CJ play softball! I was so excited about that. We really need the distraction and the normalcy. And let me tell you, CJ really needs to get out some of her energy!
Tonight was CJ's teams first tournament game. Her team hasn't won very many games, but they have come a long way. CJ's first at bat she got a big hit and started a big rally! It was great. The girls hit well and fielded as well as they have all season. CJ played in the outfield and, just in case, she wore a batting helmet the whole game. And they won!!! WOOHOO!
After the game I looked out on the field to see our team and the team that we played against all in a huddle, praying. Turns out the coach from the other team, which is a Franklin team, had gotten an email from a friend, who had gotten an email from a friend that has kids at CJ's school. This email was sent just to ask people to pray...for Clara Jean, for my family. Wow. The coach from the opposing team, brought the two together, to pray for my daughter.
What can I say? We serve an amazing God. A God that brings people together, through a heartbreaking circumstance and makes us better people. A God that heals and that will heal CJ, because we ask Him to and we believe that He will. A God that has brought my family peace, even though we are facing a long, hard, scary road. A God that deserves all the glory!
And, Chapman's Retreat, you rock. We are so blessed to be surrounded by people that really care. Thank you so much.
Tonight was CJ's teams first tournament game. Her team hasn't won very many games, but they have come a long way. CJ's first at bat she got a big hit and started a big rally! It was great. The girls hit well and fielded as well as they have all season. CJ played in the outfield and, just in case, she wore a batting helmet the whole game. And they won!!! WOOHOO!
After the game I looked out on the field to see our team and the team that we played against all in a huddle, praying. Turns out the coach from the other team, which is a Franklin team, had gotten an email from a friend, who had gotten an email from a friend that has kids at CJ's school. This email was sent just to ask people to pray...for Clara Jean, for my family. Wow. The coach from the opposing team, brought the two together, to pray for my daughter.
What can I say? We serve an amazing God. A God that brings people together, through a heartbreaking circumstance and makes us better people. A God that heals and that will heal CJ, because we ask Him to and we believe that He will. A God that has brought my family peace, even though we are facing a long, hard, scary road. A God that deserves all the glory!
And, Chapman's Retreat, you rock. We are so blessed to be surrounded by people that really care. Thank you so much.
Saturday, May 23, 2009
Friday, May 22
First thing, we heard from the neurosurgeon. They have her scheduled for a consult on June 1 and surgery on June 4.
After they remove the mass it takes 72 hours for the preliminary pathology. This will hopefully tell us if the tumor is benign or malignant.
Please continue to pray for Clara Jean and our family. Pray that the tumor is benign. Pray that the surgery goes smoothly and that the doctors are able to remove it with ease. Pray for Clara Jean to not be afraid. Pray for Lillie, Emma and Della to feel peace. Pray for Tom and I to be able to stay strong for our children.
After they remove the mass it takes 72 hours for the preliminary pathology. This will hopefully tell us if the tumor is benign or malignant.
Please continue to pray for Clara Jean and our family. Pray that the tumor is benign. Pray that the surgery goes smoothly and that the doctors are able to remove it with ease. Pray for Clara Jean to not be afraid. Pray for Lillie, Emma and Della to feel peace. Pray for Tom and I to be able to stay strong for our children.
Going home
They send us home with specific instructions to, in my words, watch everything that she does. The ER doc says, "anything that isn't 100% Clara, is an emergency." To be perfectly honset, this makes me very nervous. I have 3 other children. How can I watch every move that she makes? He lists things off that only Clara will know, numbness, light headedness, tingling sensations, change in vision. How do I explain this to my 7 year old? Then he lists off things like vomiting, talking funny, walking funny, too tired, too hyper, (Clara is always hyper!) confusion. And my head is spinning.
Let's go home and sleep...yeah, like I am going to sleep.
Let's go home and sleep...yeah, like I am going to sleep.
Friday, May 22, 2009
Vanderbilt ER
An hour or so after the initial call from the doctor, Tom talked to him again. He said that if he couldn't get us in to see a Vandy neurosurgeon that day that he wanted us to take her to the ER at Vandy Children's hospital. Dr. Mangrum felt like this would, in a way, force their hand. This is what we ended up doing.
We got to the ER a little after 3 in the afternoon. After in and out doctors and nurses and lots of, "did she bump it?" they decided to do an MRI. Now, at this point the neurosurgeon has looked at the CT scan. He is optimistic. It has indicators of being benign. But he has no idea what it is.
The ER doc tells us that they plan to sedate CJ for the MRI. He said that it would take about an hour and that it is hard for a 7 year old to sit so still for an hour. Hmmm...and this is not any 7 year old that we're talking about. This is a child that just days before had said to me, "but Mom, I am just not a sit still kind of girl!" Yes, sedation is a good idea.
When the ER doc comes back he explains to us that they don't have the staff to support sedation for an MRI that they aren't going to act on right then. He wants to try it without sedation. He said that if she holds still, great, if she doesn't then we'll have to come back the next day for the sedation. They had goggles for her to wear, that show a movie, very cool. Tom and I both tried them on! The MRI was a success, she held perfectly still and I was so proud of her. They got all of the images that they needed and we just had to wait for the neuro-radiologist to read the results.
The news is relieving. The mass is mostly on the outside of her skull. There is a hole in her skull that the mass has gone through and it is up against her brain, but it hasn't penetrated her brain! Praise God! The MRI doesn't give us anymore news about what the mass is, but the fact that it hasn't penetrated her brain and the fact that it hasn't attacked her skull more than it has are both very good things.
We got to the ER a little after 3 in the afternoon. After in and out doctors and nurses and lots of, "did she bump it?" they decided to do an MRI. Now, at this point the neurosurgeon has looked at the CT scan. He is optimistic. It has indicators of being benign. But he has no idea what it is.
The ER doc tells us that they plan to sedate CJ for the MRI. He said that it would take about an hour and that it is hard for a 7 year old to sit so still for an hour. Hmmm...and this is not any 7 year old that we're talking about. This is a child that just days before had said to me, "but Mom, I am just not a sit still kind of girl!" Yes, sedation is a good idea.
When the ER doc comes back he explains to us that they don't have the staff to support sedation for an MRI that they aren't going to act on right then. He wants to try it without sedation. He said that if she holds still, great, if she doesn't then we'll have to come back the next day for the sedation. They had goggles for her to wear, that show a movie, very cool. Tom and I both tried them on! The MRI was a success, she held perfectly still and I was so proud of her. They got all of the images that they needed and we just had to wait for the neuro-radiologist to read the results.
The news is relieving. The mass is mostly on the outside of her skull. There is a hole in her skull that the mass has gone through and it is up against her brain, but it hasn't penetrated her brain! Praise God! The MRI doesn't give us anymore news about what the mass is, but the fact that it hasn't penetrated her brain and the fact that it hasn't attacked her skull more than it has are both very good things.
Thursday, May 20
I called the doctor's office around 9:30 hoping for CT scan results. I had to leave a message. The nurse called back around 10 to tell me that they hadn't received a report yet and that they were calling to find out why. We left school around 10:30 and the girls really wanted to go visit my mom. We were at her house when the call came in from the doctor. Dr. Mangrum is our family doctor. He is the one that we couldn't see, but that did look at Clara Jean while we were in his office. We have been going to him for about six years and we love this man! Anyway, I answered the phone and heard his voice...bad news. He made sure that I wasn't driving before he told me that from the CT scan it looked like the mass started in/on her brain and was coming out through her skull. He said that it could be any number of things, that they CT scan didn't give us info like, is it cancer or is it not. He said that he would call me back soon to tell me when we were going to see a neurosurgeon at Vandy.
My "big girls", Lillie and Emma, were both watching me. I thought that I was going to throw up. I had tears in my eyes, but I had to hold it in. I was able to make it into my mom's room before I broke down. I cried, she cried and then we prayed. And then, I had to tell Tom...as soon as I told him, he left work and headed home. We both made the other phone calls. The phone calls to our families and dear friends that have been waiting and praying with us.
My "big girls", Lillie and Emma, were both watching me. I thought that I was going to throw up. I had tears in my eyes, but I had to hold it in. I was able to make it into my mom's room before I broke down. I cried, she cried and then we prayed. And then, I had to tell Tom...as soon as I told him, he left work and headed home. We both made the other phone calls. The phone calls to our families and dear friends that have been waiting and praying with us.
Wednesday, May 20
The CT scan was scheduled for 11:30. Tom met us there and they let me go in with her. When we got back there the tech told us that he was going to do a regular scan and one with dye. She was scared, but they showed her that the machine wouldn't touch her and that eased her fears. The first scan went fine...then came the IV. She was so scared of the needle, actually she screamed her head off. But she didn't move her arm. Clara laid perfectly still and let him put the IV in, even though she was yelling, she did exactly what she was told I. I was so proud of her.
Monday, May 18
When Clara Jean got up in the morning she seemed fine, but the bump on her head was still the same as it was the night before. I was worried. I took her to school and had the school nurse (thank you, Molly!) look at her. I don't really know why I didn't just throw her in the car and go to the hospital. I guess because there were still no other symptoms and it still didn't hurt. Anyway, after talking to the nurse, instead of the ER, I called the pediatrician. They could see her right away, so we headed there. Our regular doc wasn't available, so we were going to see another doc in our practice.
To make a long story short, the doctors had no idea what the bump was. Our doctor and the other doctor looked at her and both of them said that they had never seen anything like it. Comforting...I know. They set us up for a CT scan on Wednesday. The doc said that because of the absense of neurogical symptoms that it wasn't an emergency and that it was OK to wait until Wednesday. So, we waited...The doctor did tell us that anything out of the ordinary was an emergency. He said to not let her run around and limit physical activity.
To make a long story short, the doctors had no idea what the bump was. Our doctor and the other doctor looked at her and both of them said that they had never seen anything like it. Comforting...I know. They set us up for a CT scan on Wednesday. The doc said that because of the absense of neurogical symptoms that it wasn't an emergency and that it was OK to wait until Wednesday. So, we waited...The doctor did tell us that anything out of the ordinary was an emergency. He said to not let her run around and limit physical activity.
Sunday, May 17
On Sunday night, I was about to put Clara to bed when she tells me that she has a bump on her head and that it hurts a little. Tom and I looked down at her to see this huge bump on the side of her head. It is over her ear, where her hair start and comes out toward her temple. We asked her if she bumped it and she said no. We thought about taking her to the ER, but we didn't. We iced it and let her go to bed. We thought that she must have hurt herself and that she would be fine. There were no other symptoms to indicate that it was a problem. She was acting normal and said that it didn't even hurt that much. Tom and I really thought that the ice would reduce the swelling and in the morning it would be much smaller.
Starting from the beginning
I know that a lot of you already know some of the details and a lot of you don't. So I have decided to post day by day, from the beginning. Please continue to pray for Clara Jean and our family. Please feel free to post questions or comments on here, on facebook, or even to call us. Last night when I got home from the hospital I had several emails and around 50 facebook posts. I cannot express how much that meant to me. Please don't think that you are bugging us.
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