Kera was such a trooper through this whole week of radiation. We went every day this week starting Tuesday. This was the only day off she had. She would ask me the night before, do we have to go to Salt Lake for treatments AGAIN tomorrow?? My reply always being, yes. I told her that even though it was hard, this was going to help her and make her better. And it has helped. Each day she has improved little by little, and as long as she gets some rest or quiet time in the day, she has been able to come up and spend time with the family for most of the day. I love seeing any improvement in her. And there have been many blessings so far. I know the Lord hears and answers my prayers, and also the prayers of all of you and everyone who loves and cares about our family.
The side effects of the steroids are still taking a toll on her of course,some sleeplessness and especially the constant hunger. She stuffs herself with food, but even though she is full, she wants to keep eating. She joked at dinner today that she feels like a fat hippo. Her stomach just keeps expanding. I know it's hard to have this insatiable appetite, but the doctor did tell me that once the steroids are tapered off, she may lose the hunger during the radiation, and that some kids even need a feeding tube to get them to eat during this process. I sure hope that doesn't happen! I guess I would rather see the constant hunger than no hunger at all.
We have treatments tomorrow and Tuesday, then we are off to our family reunion on Wednesday. I am praying that she will be able to have the energy and the strength to enjoy the time together with our family. :)
Sunday, July 28, 2013
Thursday, July 25, 2013
Looking up
this roller coaster ride sure is getting old! my mood and outlook is often dependent on how Kera feels that day. Tuesday was a hard day. she started treatments that day in the morning, and she felt very nauseated. driving in the car also makes the nausea worse. so she wasn't very excited to start the treatment, and yesterday she was sick most of the day. my parents and sister and her kids came over for the Pioneer Day holiday, but she stayed in her room most of the time because it was too loud and she was tired.
Last night she started feeling better around dinner time and felt well enough to come do some fireworks with us last night. :)
Today the treatment wasn't until noon, which I think works better, she was able to rest in the morning before we left, and even though she cried a little when she had to get on the table, I told her we'd go get pedicures afterwards, and that's what we are doing now. We went to Panda Express for lunch and are enjoying our pedicures right now, yay!:)
Last night she started feeling better around dinner time and felt well enough to come do some fireworks with us last night. :)
Today the treatment wasn't until noon, which I think works better, she was able to rest in the morning before we left, and even though she cried a little when she had to get on the table, I told her we'd go get pedicures afterwards, and that's what we are doing now. We went to Panda Express for lunch and are enjoying our pedicures right now, yay!:)
Tuesday, July 23, 2013
First day of radiation
Tues. July 23, 2013
Today we took Kera in to LDS Hospital for her first treatment of the radiation. Everything went well. The procedure itself only took about 15 minutes. She said she was a little nervous about it, but I think the fact that she didn't have to be in there that long helped. Her stomach usually hurts while she is traveling in the car, so that was the main problem. She took a short nap when she got home, but she's awake now and seems to be okay. She told me that it's hard for her not to think about her sickness. I know it's hard to feel normal when you're going to the hospital everyday and you just aren't feeling like yourself. I wish I could keep her from worrying, but I just keep trying to reassure her that this medicine and treatments will help and she will feel better soon.
We will be going in for treatments every day this week, including tomorrow, pioneer day, and Saturday. Next week we will go Monday and Tuesday, then we leave for our family reunion Wednesday. I'm hoping by then she will have some more energy built up and she can enjoy herself during the vacation. :)
Today we took Kera in to LDS Hospital for her first treatment of the radiation. Everything went well. The procedure itself only took about 15 minutes. She said she was a little nervous about it, but I think the fact that she didn't have to be in there that long helped. Her stomach usually hurts while she is traveling in the car, so that was the main problem. She took a short nap when she got home, but she's awake now and seems to be okay. She told me that it's hard for her not to think about her sickness. I know it's hard to feel normal when you're going to the hospital everyday and you just aren't feeling like yourself. I wish I could keep her from worrying, but I just keep trying to reassure her that this medicine and treatments will help and she will feel better soon.
We will be going in for treatments every day this week, including tomorrow, pioneer day, and Saturday. Next week we will go Monday and Tuesday, then we leave for our family reunion Wednesday. I'm hoping by then she will have some more energy built up and she can enjoy herself during the vacation. :)
Monday, July 22, 2013
Tender Mercies
7/22/13 Monday:
I just reread my last post, and it's amazing what a roller coaster of emotions this whole process is. I have good days and bad ones for sure, even good hours and bad ones. But today I am positive because yesterday turned out to be a good day. :) Kera rested so much Saturday, and I think her symptons were worse that day because she probably overexerted herself on Friday with swimming outside, playing with her friends, and even playing the wii that day. It was also so hot as it's been the past few days, like 100 degree hot. It's taxing being out in the sun even for someone who's healthy. I did not see the same symptom problems on Sunday afternoon, and she even felt well enough later in the evening to play some games and spend time with the family. :) :):)
I want to talk a little bit about tender mercies of the Lord that I have seen occur during this whole ordeal. There have been many thoughts that have crossed my mind about this. I know that this is a huge trial, and one I wish I was not given because I feel so extremely unprepared and overwhelmed by it all, but at the same time, I have seen a difference in the spirit in our home since this whole thing began. I know that for me, reading my scriptures and saying my prayers has been such a comfort, and I have received many whisperings of the spirit and comfort by doing these things. I have read articles from the ensign and thought back to all of the lessons we have had over this past year in Young Women.
The curriculum for the youth this year is all about the plan of salvation, the Savior, the power of the priesthood, the ordinance of baptism, the ordinances performed in the temple, specifically being sealed together as families for eternity. All of these things have been preparing me for this trial. I understand that now. I wondered when I was called to the position as 1st counselor in the young womens presidency why I was called to such a time consuming and foreign calling to me. I thought it would be hard to be away from my little ones while I attend youth activities every wednesday night, and girls camp, and the pioneer trek, etc., etc etc.. But I know now that I needed to be spiritually prepared. I needed to understand the plan of salvation, the ordinances of this gospel and why they are so important, the importance of strengthening my testimony and standing in holy places and the atonement of the Savior, all of which things were focused on at girls camp. I needed to understand to a small extent the sacrifice that the early pioneers of our church made while crossing the plains and moving their families and their possessions and their whole life across the country to start a new life and all of the sacrifices they made along the trail, especially the sacrifice of having to bury their own children.
There is a missionary that just got transferred to our area, and we just found out that his sister suffered a brain tumor similar to the one Kera has. I am not sure if it is exactly the same, but he told us about the diet and juices and things that his mom would make and give to his sister to help her with her illness. This is something worth researching. Also, Saturday night while we were at the temple, one of the temple workers was a lady who used to live in the ward I grew up in in California. She told me how she is praying for Kera every day, and put her name on the prayer roll. She also has a daughter who works at the UofU, so who knows, I may need to give her a call sometime. It helped to have someone I know in the temple that night as I was definitely very emotional. So many tender mercies are occuring.
I know the Lord sees the whole picture and he knows what we need. I truly feel that I need to feel this pain and this sacrifice to understand things that I wouldn't understand otherwise, and ultimately I know a miracle can occur if it is the Lord's will for Kera and that my daughter can be healed. I know that can only happen if we have faith and if she has faith to be healed.
I talked to Kera last night about the importance of faith. I read to her from the Book of Mormon where it talks about Christ visiting the Nephites on the American Continent and how the people were so moved by his sermon and they wanted more than anything for Christ to heal their sick. He felt their strong faith and he asked them to bring their sick unto him and he would heal them. After he healed them and performed these miracles, those that were healed kissed the Savior's feet and bathed them with their tears. It was funny because then Kera said, "Eww, I wouldn't kiss his feet if Christ healed me, but I would give him a big hug. It's so funny how kids think.
After we read the scriptures together, I encouraged Kera to write in her journal. I helped her write down the words that she wanted to say in her journal, then I tucked her in to bed. It was such a special moment shared with her and I hope to continue this each night with her.
Kera of course has many worries, and it is very difficult to know how to proceed with everything sometimes. Do I give her all the information and maybe worry her more, or do I spare her some of the details and maybe lessen her worries. But she also told me tonight that she doesn't like it when I leave the room and talk about her without her being there. This scares her more, so I am going to try to not do that anymore. She also gets scared and night when she thinks about everything. Tonight she told me that she was scared that she wouldn't ever get to do the things that she used to do like gymnastics and so many things she enjoys doing. I tried to reassure her that these treatments will help her get better and she will get to do all of the things she used to do. I know she will get better, and I hope it's soon!
Kera has been much more tired in the mornings, but like last night she had more energy in the late afternoon and around dinnertime. So today after I got back from Walmart, and I brought her home some cheerful flowers as per her request. Actually she made a list of all of the foods and things that sounded good to her, so off to the store I went to purchase those items. Before I left I asked her if there was anything else she wanted, and she said flowers, and she wanted them to be yellow, cheerful ones. ;) So i picked up some yellow stargazer lilies and she loved them. I also got her some Mr. Sketch scented markers like the ones she uses at grandpa's house that she can use while we're driving to salt lake city everyday and while we're waiting for her treatments. After I got back from the store she was feeling well enough, so we went to chuck e cheese for family night. Oh and by the way, we are starting Kera's treatment now tomorrow, and we will do the treatment on Wednesday, Thursday, Friday and Saturday. They want to fit in as many treatments as they can before we leave for our family reunion next wednesday. I'm anxious to start the radiation treatments tomorrow. I will give an update on how all of that goes later.
p.s.-I know many of you who are reading my blog may not be LDS, and if there are questions that you have about any of the things I am discussing or if you want to learn more, please feel free to check out www.lds.org. You can type in your questions, watch videos, learn more about the plan of salvation and eternal families, or anything at all. It is a great website with so many valuable tools and resources. I know that the knowledge I have that the Savior lives and my testimony of the gospel is what is getting me through all of this.
I just reread my last post, and it's amazing what a roller coaster of emotions this whole process is. I have good days and bad ones for sure, even good hours and bad ones. But today I am positive because yesterday turned out to be a good day. :) Kera rested so much Saturday, and I think her symptons were worse that day because she probably overexerted herself on Friday with swimming outside, playing with her friends, and even playing the wii that day. It was also so hot as it's been the past few days, like 100 degree hot. It's taxing being out in the sun even for someone who's healthy. I did not see the same symptom problems on Sunday afternoon, and she even felt well enough later in the evening to play some games and spend time with the family. :) :):)
I want to talk a little bit about tender mercies of the Lord that I have seen occur during this whole ordeal. There have been many thoughts that have crossed my mind about this. I know that this is a huge trial, and one I wish I was not given because I feel so extremely unprepared and overwhelmed by it all, but at the same time, I have seen a difference in the spirit in our home since this whole thing began. I know that for me, reading my scriptures and saying my prayers has been such a comfort, and I have received many whisperings of the spirit and comfort by doing these things. I have read articles from the ensign and thought back to all of the lessons we have had over this past year in Young Women.
The curriculum for the youth this year is all about the plan of salvation, the Savior, the power of the priesthood, the ordinance of baptism, the ordinances performed in the temple, specifically being sealed together as families for eternity. All of these things have been preparing me for this trial. I understand that now. I wondered when I was called to the position as 1st counselor in the young womens presidency why I was called to such a time consuming and foreign calling to me. I thought it would be hard to be away from my little ones while I attend youth activities every wednesday night, and girls camp, and the pioneer trek, etc., etc etc.. But I know now that I needed to be spiritually prepared. I needed to understand the plan of salvation, the ordinances of this gospel and why they are so important, the importance of strengthening my testimony and standing in holy places and the atonement of the Savior, all of which things were focused on at girls camp. I needed to understand to a small extent the sacrifice that the early pioneers of our church made while crossing the plains and moving their families and their possessions and their whole life across the country to start a new life and all of the sacrifices they made along the trail, especially the sacrifice of having to bury their own children.
There is a missionary that just got transferred to our area, and we just found out that his sister suffered a brain tumor similar to the one Kera has. I am not sure if it is exactly the same, but he told us about the diet and juices and things that his mom would make and give to his sister to help her with her illness. This is something worth researching. Also, Saturday night while we were at the temple, one of the temple workers was a lady who used to live in the ward I grew up in in California. She told me how she is praying for Kera every day, and put her name on the prayer roll. She also has a daughter who works at the UofU, so who knows, I may need to give her a call sometime. It helped to have someone I know in the temple that night as I was definitely very emotional. So many tender mercies are occuring.
I know the Lord sees the whole picture and he knows what we need. I truly feel that I need to feel this pain and this sacrifice to understand things that I wouldn't understand otherwise, and ultimately I know a miracle can occur if it is the Lord's will for Kera and that my daughter can be healed. I know that can only happen if we have faith and if she has faith to be healed.
I talked to Kera last night about the importance of faith. I read to her from the Book of Mormon where it talks about Christ visiting the Nephites on the American Continent and how the people were so moved by his sermon and they wanted more than anything for Christ to heal their sick. He felt their strong faith and he asked them to bring their sick unto him and he would heal them. After he healed them and performed these miracles, those that were healed kissed the Savior's feet and bathed them with their tears. It was funny because then Kera said, "Eww, I wouldn't kiss his feet if Christ healed me, but I would give him a big hug. It's so funny how kids think.
After we read the scriptures together, I encouraged Kera to write in her journal. I helped her write down the words that she wanted to say in her journal, then I tucked her in to bed. It was such a special moment shared with her and I hope to continue this each night with her.
Kera of course has many worries, and it is very difficult to know how to proceed with everything sometimes. Do I give her all the information and maybe worry her more, or do I spare her some of the details and maybe lessen her worries. But she also told me tonight that she doesn't like it when I leave the room and talk about her without her being there. This scares her more, so I am going to try to not do that anymore. She also gets scared and night when she thinks about everything. Tonight she told me that she was scared that she wouldn't ever get to do the things that she used to do like gymnastics and so many things she enjoys doing. I tried to reassure her that these treatments will help her get better and she will get to do all of the things she used to do. I know she will get better, and I hope it's soon!
Kera has been much more tired in the mornings, but like last night she had more energy in the late afternoon and around dinnertime. So today after I got back from Walmart, and I brought her home some cheerful flowers as per her request. Actually she made a list of all of the foods and things that sounded good to her, so off to the store I went to purchase those items. Before I left I asked her if there was anything else she wanted, and she said flowers, and she wanted them to be yellow, cheerful ones. ;) So i picked up some yellow stargazer lilies and she loved them. I also got her some Mr. Sketch scented markers like the ones she uses at grandpa's house that she can use while we're driving to salt lake city everyday and while we're waiting for her treatments. After I got back from the store she was feeling well enough, so we went to chuck e cheese for family night. Oh and by the way, we are starting Kera's treatment now tomorrow, and we will do the treatment on Wednesday, Thursday, Friday and Saturday. They want to fit in as many treatments as they can before we leave for our family reunion next wednesday. I'm anxious to start the radiation treatments tomorrow. I will give an update on how all of that goes later.
p.s.-I know many of you who are reading my blog may not be LDS, and if there are questions that you have about any of the things I am discussing or if you want to learn more, please feel free to check out www.lds.org. You can type in your questions, watch videos, learn more about the plan of salvation and eternal families, or anything at all. It is a great website with so many valuable tools and resources. I know that the knowledge I have that the Savior lives and my testimony of the gospel is what is getting me through all of this.
Sunday, July 21, 2013
Sunday July 22, 2013-
Yesterday was a difficult day. Kera was not feeling well all day. She was very irritated with little things. If her brothers came in the room she would scream at them to go away. Noises are distracting to her now. She doesn't want to listen to music, she really can't read books and anyone reading to her is hard for her, I think because she is having a hard time processing things. The sensory parts of her brain are affected with this tumor as well. It seems like the steroid pills have helped with her eye tracking and her dizziness, but now the cognitive abilities and balance, depth perception, sensitivity is getting worse. She is also having a hard time swallowing her food as well, and that is scary, because the doctor said the swallowing could get worse and is weakened, so food could travel down to her lungs instead of her stomach and she could asperate. We need to watch how she's eating and make sure she eats very slowly.
I was feeling very hopeful starting out yesterday, but after seeing how things have gotten worse, it's so hard to continue being so positive. I am scared!!! I just thought we would see improvements with the steroid pills, not worsening symptoms. I am calling the doctor this morning. I feel like I have so many questions. Before I had none because I didn't know what questions to ask and I was in shock. No I feel like I have so many questions.
Today our family and my extended family is fasting for Kera. We are going to all end our fast at 5 p.m. with a prayer. I know prayers will help her, and I know that I need to continue to be faithful. I just hate seeing her like this!!
Yesterday was a difficult day. Kera was not feeling well all day. She was very irritated with little things. If her brothers came in the room she would scream at them to go away. Noises are distracting to her now. She doesn't want to listen to music, she really can't read books and anyone reading to her is hard for her, I think because she is having a hard time processing things. The sensory parts of her brain are affected with this tumor as well. It seems like the steroid pills have helped with her eye tracking and her dizziness, but now the cognitive abilities and balance, depth perception, sensitivity is getting worse. She is also having a hard time swallowing her food as well, and that is scary, because the doctor said the swallowing could get worse and is weakened, so food could travel down to her lungs instead of her stomach and she could asperate. We need to watch how she's eating and make sure she eats very slowly.
I was feeling very hopeful starting out yesterday, but after seeing how things have gotten worse, it's so hard to continue being so positive. I am scared!!! I just thought we would see improvements with the steroid pills, not worsening symptoms. I am calling the doctor this morning. I feel like I have so many questions. Before I had none because I didn't know what questions to ask and I was in shock. No I feel like I have so many questions.
Today our family and my extended family is fasting for Kera. We are going to all end our fast at 5 p.m. with a prayer. I know prayers will help her, and I know that I need to continue to be faithful. I just hate seeing her like this!!
Saturday, July 20, 2013
The Phone call that changed everything
Before I begin this blog, let me first say how much we have appreciated the support we have received from family and friends thus far. It helps a lot. Especially all of the prayers. We need a miracle for our little girl, and I have faith that, god willing, she will be healed. Let me also say that Kera is a very bright girl, she does not miss much at all, and when we were in with the doctor at primary children's, she heard the doctor use the term incurable, and it really upset her. We have since tried to reassure her that she is going to take medicine and will be doing treatments to make her better, and she will get better. I want to spare her the details, and so we are asking that you all use discretion when discussing Kera's illness with your children. We are not using the term cancer or tumor with her or any of our other children, in hopes to spare them of extreme worry and fear until it is absolutely necessary to tell them. We want her to feel as normal as humanly possible during all of this ordeal. Thank you!
Tuesday July 17, 2013-
This is the day that changed our family's life forever. I took Kera to the pediatrician on Tuesday because she has been complaining about dizziness for the past 5 weeks or so. She fell off our swing set right after school got out, around the 8th of June. She was sitting on the trapeze bar and she fell off backwards and hit her head. I didn't see her fall, but we were all outside for Family Night playing ladder ball. She came over and told me she fell off the swing, but she was crying terribly. I remember her telling me a day or so later that she got dizzy when she laid down. She also complained about getting dizzy after doing her gymnastics. We took her out of her tumbling class for a break back in May, so she wasn't doing that at the time. But she still would tumble around and jump on the tramp.
A few other symptoms starting popping up throughout the summer. She seemed more tired during the days, and she was also short tempered, and whinier than normal. She would complain about chores more than normal, and fight more with her brothers. About a week ago I also noticed that one of her eyes was not tracking normally and the eyelid drooped, and she just looked tired. Also her speech was a bit more slurred than normal. She's always been a mumbler, but this was more severe. So back to Tuesday. I took her in to our pediatrician because I thought she may have gotten a concussion when she fell off the swingset, and this is why all these symptoms were occuring. At the check up the pediatrician agreed that she may have suffered a concussion, just the eye tracking was what worried him so he ordered a ct scan. He called and the clinic close to that office was available, so I drove her over there to get it done. It sounded routine, and we were pretty sure that we wouldn't see much. Well, about an hour or so after we got home, Dr. Owen the pediatrician called to tell us that he got the results back from the scan. He told me it wasn't good news. He said that they found a tumor on her brain, and it was at the brain stem. Not in a good location.
He said he made us an appointment at Primary Childrens for the next day with oncology/hematology. I just about flipped out even hearing the word oncology. My heart still races as I write this and think back to that moment. I started to lose it on the phone and I told Jacob to run and get dad who was downstairs. Jacob told him that I was crying on the phone and he just knew it was something bad. The doctor kept talking and I was numb in shock, so Dave got on the phone and he explained things again to him. I ran to my bedroom and curled up in a ball just saying over and over "I don't know what to do, I don't know what to do". This had to be a mistake. He was obviously confused and maybe he had us mixed up with someone else's scans. When Dave got off the phone we just cried together and held one another. He started to look up information on the ipad, and we also called our parents. There are no words to describe the pain I felt that night while thoughts raced through my mind about what we just heard and what was going to happen and what we would be told the next day. That was the longest night of my life. Dave and I did our best to hold it together. I finally was able to come out of the bedroom and be with the kids for a little bit before they went to bed. I finished watching an American Girl movie with Kera and the kids and I just had my arms around her the whole time. I slept so little that night and my mind raced through endless thoughts and emotions. I went downstairs to check on Kera around 3 a.m. and went to our craft room and read journals Kera has written and looked through photo albums. I think I slept for a for hours.
The next day we spent taking pictures, taking video, we played games as a family, and we asked Kera where she wanted to go for lunch. She chose Golden Corral, one of her favorite restaurants. We had such a fun time together, Dave and I were fasting so we really got to focus on the kids and watching them enjoy their meal and the cotton candy, and laughing at Ryder as he got food ALL over him and ice cream in his hair and everywhere. We laughed at Kera's cotton candy moustache and at Jacob's 10 desserts, and Michael's insisting that he eat every dessert and to see how many times he could go back to the chocolate fountain. It was wonderful, but I had that pit in my stomach the whole time. And I couldn't help looking at other people and families with envy. Why does my daughter have this sickness and you are able to sit there looking so carefree?
We left and my parents were at our house waiting to watch the kids. We didn't want to spoil anything, so we told Kera and the kids that we had to take her back to the hospital today for more tests. She was so sad and didn't want to go, but we got back to the house, Dave and my dad gave Kera a blessing, we packed some things and we left.
When we got to the oncology lab we met our dr., or fellow, Dr. Fair. He did a check up on Kera similar to the one our pediatrician gave her the day before. We had been given a cd of the ct scan we had taken the day before, and gave it to him. He returned a little while later with his attending doc. She was very factual about the results of the scan and confirmed what the technician wrote in his notes. She had DIPG, a rare brain tumor in the pons region. Like I mentioned above, Kera was in the room at the time, and the doctors found it best to allow the child to be informed, but I do wish she had not heard that term incurable. She started to cry and then one of the nurses took her out. The attending doctor said she may not fully understand the term uncurable, but Kera is no dummy, she knows what that means. Since that time we have tried to do our best to explain to Kera that yes she has a sickness in her brain, but she is going to be getting treatments to make the sickness and the bad symptoms go away. Which we believe that with the steroids and the radiation, this will happen. The doctor as well as the radiation doctor that we met with yesterday, Dr. Hunter, have both told us that in almost all cases this radiation with improve the systems and will shrink the tumor. The tumor is so aggressive and invasive that there is no way to do surgery on it. The vital nerves are intertwined with the healthy ones and they cannot risk being damaged. In most cases after a period of time the tumor will come back, and at that point there is no second radiation, and chemotherapy has not proven to make any improvement at all, it just makes you sicker and suffer those last months.
The radiation therapist that we met with yesterday (Thursday)Dr. Hunter, was amazing. He knows his stuff and we feel very confident in his abilities. He showed us the scans of her brain. He pointed out the location of the tumor, and it was a large mass covering most of the brain stem. He also fitted her for a mask that she will wear during treatment that is made specially for her. The treatment itself will only be about 10 minutes long, they will aim the laser, or radiation treatment, right at the tumor to shrink it down over a course of 6 weeks. She will start the treatments next Thursday. She started taking the steroid pills Wednesday night, and we have already seen improvement in her eyes today and some of the other symptoms, like the dizziness, have decreased. Her balance and depth perception have been a little off, but I think that is from the steroids doing their job and her body trying to adjust. She also has had a lot of nausea and tells me often that her stomach hurts, this could be from the affect of the steroid pills as well. She is also taking prevacid with the steroids to protect her stomach.
Today is Friday and she woke up with a bad stomachache, and complained about the nausea and tiredness a lot. She also has been tripping and having those balance problems a bit more today. But around noon, after the zofran for nausea kicked in, she started feeling a little better, and Jacob was going to swim outside in our wading pool, and she decided to swim too. I was so glad. We took all the kids outside to swim, except Michael who was playing with a friend. She wasn't totally into it, I think she still felt a bit sick, but she started getting energy, and she asked if her friends Samantha and Gracie from our ward in Kaysville could come play. I texted them and they came right away. So Kera played with her friends and got a little tired, but had a lot of fun seeing her old friends again. After they left we had dinner, got another round of meds, and she was in bed early tonight. Tomorrow is another day. We shall see.
I do know that I have faith that miracles are real and that our Kera will get better. The treatments will work and she will be able to do those things that she used to do. She will return to school and go on family trips. We will cherish each and every day with each one of our children. Our family is eternal and I know that the Lord knows what is best for our family. He knows the whole picture. I know that we will be strengthened through this time. I have already seen a huge change in our family and the spirit in our home, even after the shock and devastation that comes in a time like this.
Tuesday July 17, 2013-
This is the day that changed our family's life forever. I took Kera to the pediatrician on Tuesday because she has been complaining about dizziness for the past 5 weeks or so. She fell off our swing set right after school got out, around the 8th of June. She was sitting on the trapeze bar and she fell off backwards and hit her head. I didn't see her fall, but we were all outside for Family Night playing ladder ball. She came over and told me she fell off the swing, but she was crying terribly. I remember her telling me a day or so later that she got dizzy when she laid down. She also complained about getting dizzy after doing her gymnastics. We took her out of her tumbling class for a break back in May, so she wasn't doing that at the time. But she still would tumble around and jump on the tramp.
A few other symptoms starting popping up throughout the summer. She seemed more tired during the days, and she was also short tempered, and whinier than normal. She would complain about chores more than normal, and fight more with her brothers. About a week ago I also noticed that one of her eyes was not tracking normally and the eyelid drooped, and she just looked tired. Also her speech was a bit more slurred than normal. She's always been a mumbler, but this was more severe. So back to Tuesday. I took her in to our pediatrician because I thought she may have gotten a concussion when she fell off the swingset, and this is why all these symptoms were occuring. At the check up the pediatrician agreed that she may have suffered a concussion, just the eye tracking was what worried him so he ordered a ct scan. He called and the clinic close to that office was available, so I drove her over there to get it done. It sounded routine, and we were pretty sure that we wouldn't see much. Well, about an hour or so after we got home, Dr. Owen the pediatrician called to tell us that he got the results back from the scan. He told me it wasn't good news. He said that they found a tumor on her brain, and it was at the brain stem. Not in a good location.
He said he made us an appointment at Primary Childrens for the next day with oncology/hematology. I just about flipped out even hearing the word oncology. My heart still races as I write this and think back to that moment. I started to lose it on the phone and I told Jacob to run and get dad who was downstairs. Jacob told him that I was crying on the phone and he just knew it was something bad. The doctor kept talking and I was numb in shock, so Dave got on the phone and he explained things again to him. I ran to my bedroom and curled up in a ball just saying over and over "I don't know what to do, I don't know what to do". This had to be a mistake. He was obviously confused and maybe he had us mixed up with someone else's scans. When Dave got off the phone we just cried together and held one another. He started to look up information on the ipad, and we also called our parents. There are no words to describe the pain I felt that night while thoughts raced through my mind about what we just heard and what was going to happen and what we would be told the next day. That was the longest night of my life. Dave and I did our best to hold it together. I finally was able to come out of the bedroom and be with the kids for a little bit before they went to bed. I finished watching an American Girl movie with Kera and the kids and I just had my arms around her the whole time. I slept so little that night and my mind raced through endless thoughts and emotions. I went downstairs to check on Kera around 3 a.m. and went to our craft room and read journals Kera has written and looked through photo albums. I think I slept for a for hours.
The next day we spent taking pictures, taking video, we played games as a family, and we asked Kera where she wanted to go for lunch. She chose Golden Corral, one of her favorite restaurants. We had such a fun time together, Dave and I were fasting so we really got to focus on the kids and watching them enjoy their meal and the cotton candy, and laughing at Ryder as he got food ALL over him and ice cream in his hair and everywhere. We laughed at Kera's cotton candy moustache and at Jacob's 10 desserts, and Michael's insisting that he eat every dessert and to see how many times he could go back to the chocolate fountain. It was wonderful, but I had that pit in my stomach the whole time. And I couldn't help looking at other people and families with envy. Why does my daughter have this sickness and you are able to sit there looking so carefree?
We left and my parents were at our house waiting to watch the kids. We didn't want to spoil anything, so we told Kera and the kids that we had to take her back to the hospital today for more tests. She was so sad and didn't want to go, but we got back to the house, Dave and my dad gave Kera a blessing, we packed some things and we left.
When we got to the oncology lab we met our dr., or fellow, Dr. Fair. He did a check up on Kera similar to the one our pediatrician gave her the day before. We had been given a cd of the ct scan we had taken the day before, and gave it to him. He returned a little while later with his attending doc. She was very factual about the results of the scan and confirmed what the technician wrote in his notes. She had DIPG, a rare brain tumor in the pons region. Like I mentioned above, Kera was in the room at the time, and the doctors found it best to allow the child to be informed, but I do wish she had not heard that term incurable. She started to cry and then one of the nurses took her out. The attending doctor said she may not fully understand the term uncurable, but Kera is no dummy, she knows what that means. Since that time we have tried to do our best to explain to Kera that yes she has a sickness in her brain, but she is going to be getting treatments to make the sickness and the bad symptoms go away. Which we believe that with the steroids and the radiation, this will happen. The doctor as well as the radiation doctor that we met with yesterday, Dr. Hunter, have both told us that in almost all cases this radiation with improve the systems and will shrink the tumor. The tumor is so aggressive and invasive that there is no way to do surgery on it. The vital nerves are intertwined with the healthy ones and they cannot risk being damaged. In most cases after a period of time the tumor will come back, and at that point there is no second radiation, and chemotherapy has not proven to make any improvement at all, it just makes you sicker and suffer those last months.
The radiation therapist that we met with yesterday (Thursday)Dr. Hunter, was amazing. He knows his stuff and we feel very confident in his abilities. He showed us the scans of her brain. He pointed out the location of the tumor, and it was a large mass covering most of the brain stem. He also fitted her for a mask that she will wear during treatment that is made specially for her. The treatment itself will only be about 10 minutes long, they will aim the laser, or radiation treatment, right at the tumor to shrink it down over a course of 6 weeks. She will start the treatments next Thursday. She started taking the steroid pills Wednesday night, and we have already seen improvement in her eyes today and some of the other symptoms, like the dizziness, have decreased. Her balance and depth perception have been a little off, but I think that is from the steroids doing their job and her body trying to adjust. She also has had a lot of nausea and tells me often that her stomach hurts, this could be from the affect of the steroid pills as well. She is also taking prevacid with the steroids to protect her stomach.
Today is Friday and she woke up with a bad stomachache, and complained about the nausea and tiredness a lot. She also has been tripping and having those balance problems a bit more today. But around noon, after the zofran for nausea kicked in, she started feeling a little better, and Jacob was going to swim outside in our wading pool, and she decided to swim too. I was so glad. We took all the kids outside to swim, except Michael who was playing with a friend. She wasn't totally into it, I think she still felt a bit sick, but she started getting energy, and she asked if her friends Samantha and Gracie from our ward in Kaysville could come play. I texted them and they came right away. So Kera played with her friends and got a little tired, but had a lot of fun seeing her old friends again. After they left we had dinner, got another round of meds, and she was in bed early tonight. Tomorrow is another day. We shall see.
I do know that I have faith that miracles are real and that our Kera will get better. The treatments will work and she will be able to do those things that she used to do. She will return to school and go on family trips. We will cherish each and every day with each one of our children. Our family is eternal and I know that the Lord knows what is best for our family. He knows the whole picture. I know that we will be strengthened through this time. I have already seen a huge change in our family and the spirit in our home, even after the shock and devastation that comes in a time like this.
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