As a friend suggested to me, after what we have just gone through I should write down everything I’m thinking and it will help me clear my mind and help me remember everything that has happened over the last few weeks to our little girl. No one may ever read this, but I know it’s here and I can always come back to it to reflect on the shock of everything. "Pilocytic Astrocytoma:? Never heard of it, can hardly say it. This is my thoughts and feelings and what has happened to Sarah. If someone reads this I know it may jump from thought to thought, today that’s how my mind is working. Please excuse my typo's as I'm sure there will be ones I will not catch.
October 9th, 2010 was the most shocking day of our life. I am a mother of three and the oldest is 19 and my youngest is 14. Not to leave my middle one out she is 18. We have been blessed with three beautiful, talented children that have been nothing but loving, and caring to myself and their dad there entire life's. Not always to each other, but to us they have been. We have been married for soon to be 20 years on December 16, 2010. Siblings are not always pleasant to each other, I mean they do love each other but others may not see it, until recently. October 9, 2010 was a day that changed us all and will have changed our life forever.
Our youngest Sarah has always been a shy sweet girl and was always kind to her family and friends and we never had any complaints about her or from her. Just an occasional gripe about not having new jeans or a new pair of shoes to wear. But she always ended up with "ah, never mind I don't need it, mommy". She has always been so sensitive to others, especially her grandparents. She has softness about being around senior citizens and keeping them company. She had always done okay in school, her grade were not always A's and B's but she passed. We knew she would struggle when she entered into High School so we placed her in a Charter school here in our home town where she would get more one on one teaching. We knew this was the best thing for her and until last year she loved school. Something was beginning to change for her this school year of 2010 but we weren't sure what was going on. Puberty, boys, school in general but something was changing, I don’t know what but I know something’s just not right with her.
A little information about our children:
All three of our children were always special in their own way. Our one and only son was home schooled and taught himself to play guitar. Now he is in a successful band, Indian City Weather, that will soon have their first Demo CD out to distribute to recording studios and we know they will be successful. Our oldest daughter has always had great grades and will be going to college soon to get a degree in the area in which she has always wanted. She has wanted to be Vet ever since she was a little girl and could hardly say the name. Sarah wants to be Chef or something in Culinary Arts, more than likely in Pastry and Design. She actually wants to learn to play guitar herself and Jonah has taught her a few things. She has the same long fingers that he has so who knows.
When the kids were all little our first two were so close, actually only 14 months apart in age! He was only 4 months old when I found out I was expecting again. They were like two little bear cubs and were always together, everywhere. When they were both still in diapers they were just like twins! One night I was bathing them before bed and I always got my daughter out first because she was the youngest and my son played with his toys as I dried off his sister and dressed her. Then he would be out next, he loved to watch the water go down and would help push is down the drain to “get the water all gone" he was afraid to let his toes get too close to the drain because he thought they would fall down the drain.
The day I stopped them bathing together was when I took his sister out first and he had a funny little look on face and asked me this question: "Mommy, how come sissy don't have no pee pee, she just has two butt's". Well he noticed the difference and that was the end of bathing together. It was a sad day in a way because I knew they were getting a little older. Of course his sister didn't notice a thing she just wanted to play in the water. There is an age difference between the two of them and Sarah; she is four years younger than her sister so it was like having a baby again for the first time.
Sarah had her little routine every day!
When she was just a little girl she had her funny little rituals that she did every day. When her brother and sister waited for the school bus to come to our driveway Sarah would hurry and put on her little black dress shoes with no socks on, then she would run out the front door. We had three trees in the front yard. Sarah would run around each tree one after the other, three times around each tree and then run back in the living room plop down on the floor and watch Barney. “Every Morning”. It was like clockwork for her. She would also and still is attached to my hip, she needs to know where I am and then she gets comfy in her room or playing somewhere. But she has to know where I am first.
She would also whisper this little thing to me all the time, it started when she was about 2 years old. She would say "mommy, I want to tell you a secret” she would whisper "pit ta pi tal" I have no idea what this meant and not even sure how to spell it but this is close. She did this for years, and then one day just stopped. I'm so grateful to have so many memories from our childrens childhood and love sharing the funny little stories and laugh at the silly little things they did and will of course one day tell their children the same little stories. I am so glad I have so many great memories of all three kids because I need them to get through what I went through beginning October 9th, 2010. Saturday morning we woke up to not knowing the worst day of our lives.
Sarah, our little girl
She is 14 years old; she had been having headaches that were first diagnosed the end of September 2010, as a muscle strain in the back of her neck. This didn't get any better and I received a call from her school nurse Jennifer because she was concerned about Sarah complaining about headaches and was concerned that maybe Meningitis she had symptoms with headaches. She had already had her shot for Meningitis so she thought it would be rare for her to have this but it would be better have her checked than not. Knowing Sarah like she does, it's a small school; Jennifer knew something wasn't right with Sarah. It's rare to find a person like this that goes above and beyond their job responsibilities. The next day, I called Sarah's family doctor and made the appointment. Her doctor was not available but she was able to see another doctor from the office and I took her in. Her second diagnosis was for Migraines this was on October 4, 2010. She was given two medications one for pain and one to help her sleep at night.
She did sleep but as soon as she woke up the headache was back again. It had gotten to the point that it was confusing to understand where she was hurting, in the back of her head, on the top of her head, on the side? It moved from side to side and was sharp then dull aches. Was it a headache, her sinuses? She was sleeping more and more when she came home from school had no appetite at all. She had already lost about 10 pounds in just a week and a half and was not feeling well. She was not talking to her friends, not on her phone and not on the computer and when she did try to talk on Face-book it hurt her eyes and she would go and lay down. She was irritated and fussy and just hateful which was just not Sarah at all. We thought maybe she needed new glasses, maybe the strength was not strong enough although we just got them in August 2010 right before school started and it was October 2010 so that would be far fetched if so.
So our lives was about to change forever and we didn’t even know it. I cannot explain and may never understand why this happened, it’s not even what the doctor tells you it’s what they don’t tell you that you have to listen too. Sarah is my baby and this Blog will serve as my therapy and information for awareness for others that may cross paths with me. She is an angel sent to us and I know she has already changed lives and will continue to do so.
Saturday October 9th, 2010 Sarah woke up with a horrible headache at about 4:00 a.m. and her top to the middle of her back was hurting her. I put a heating pad on her back and I gave her medicine and she fell asleep only to wake up around 11:30 a.m. and told me "Mom I can't stand the pain any more, please take me to the hospital". By 1:15 p.m. Sarah and I were at Methodist Hospital in the Emergency Room in Indianapolis, Indiana. This is where is all began. We had the E.R. doctor come in to talk with Sarah about the pain she was having. Oddly enough, the doctor's name was Dr. House.
She went through Sarah s entire history of the headaches when they began, how they felt and her pain level. She asked me if Sarah had ever had any imaging done. I told her no, so she began ordering a series of test for her. From when we first got to the hospital Sarah was taken straight back to a room because of her pain and they started giving her pain medication. It started with Tylenol, then Ibuprofen then Tylenol Three with Codeine and then Morphine. All within 2 hours her medication changed from one to the other and then I was given the news of her CT scan. I never expected to hear what Dr. House was about to tell me, it was like I was watching a movie on Lifetime T.V.
Okay, here comes the shock;
When Dr. House came in shortly after the CT scan she sat by Sarah on her bed and asked how she was doing? Sarah didn't answer she just laid on her bed in pain, the light was dim in her room and Dr. House began to talk to me about her test. She said the good news was that Sarah's neurological areas were working fine but they did find an area that they were concerned about and someone from Neurology would be down to talk to me soon, his name I kid you not, is Dr. Wilson.
I'm sure my eyes were as big as a half dollar when I hear Dr. House say “We found a Mass” Sarah didn't notice she had a cold towel over her head to keep the light out of her eyes and help with the pain. Dr. House said that they found a mass approximately 3 cm. in size in the back of Sarah s head and she would need to have something done about it. “A mass, what did that mean? Tumor, Cancer what is going on? My heart fell to my stomach and I felt weak in my knees and later noticed I almost stopped breathing. I just couldn’t comprehend what the doctor just said to me, this can’t be it’s a mistake, it’s got to be; What? My daughter has a mass in the back of her head, What! This is just what was going through my mind. I remember thinking, what did you just say? Can you tell me again, slowly please? She said they would have additional testing to do and would be back to us soon. Sarah also had swelling on her brain which was causing the pain they called it hydrocephalus.
Once Dr. House was done talking, I asked her if Sarah would be going home or what will happen next? She said they would more than likely keep her but once the Neurology team came in to talk to us they would explain more. I looked at Sarah and told her I needed to go call her Daddy, he was home putting breaks on one of our vans. He would need to be there with me, she said “okay mommy, hurry back”. Dr. House walked out in front of me and waited in the hallway for me to walk out. She looked at me and asked me if I was okay and if I needed something, I didn't say anything I just cried. She said do you need a hug and the next thing I remember, she was hugging me as I just cried on her shoulder.
She told me "you’re a mom, you knew something was wrong and your brought her in, that was good” You did the right thing she said, although I felt like I should have had her there way before then. We thought it was the glasses! Why did I wait so long to bring her in? Why does she have this? Where did it come from? Is this because I had her later in life? After a few minutes she asked if I needed something for my nerves and I told her I needed to call her Dad, she told me where to use the phone, in the quiet room so off I went to try and relay the news I just got to my husband as calmly as possible. I called my husband, her daddy Steve, as soon as I heard his voice, I just lost it.
I told him he needed to get Jonah and Rachel up here as soon as possible, I didn’t know what to do or think all I could do was cry. They got there shortly after but it seemed to take hours of course. When I called her brother and did not get an answer I panicked. Then I called her older sister and as soon as she heard my voice she began to cry and ask Mommy, what's wrong? Mommy what’s wrong with my sister, what’s wrong with Sarah? I told her it was bad, Sarah had something wrong and I needed her at the hospital. She asked where her daddy was and I told her home working on breaks, she said she would call him to see if he needed a ride. Then right, before hanging up Jonah called in and said his usual; “eh, did you call?” I was crying and had to tell him the same thing, he was with his girlfriend Jory and he said mom in such a grown up way “mom, listen to me; she’s going to be okay, calm down we are on our way”.
It was hard to breathe, I couldn't even feel my heart beating!
It was hard to breathe, I couldn't even feel my heart beating!
I then began calling my sisters, I have four of them. Teresa, Helen Carol and Sheila. I called Helen first she lives close to the hospital and she said she was on her way, Teresa then she said they would be right there. Carol was in Chicago visiting her son and I didn’t have a way to reach her yet and Sheila is my youngest sister she was called by Teresa. Teresa is the oldest and her and Bryan her husband were the first to get there. I was then back in the MRI waiting room waiting which they had decided to do to make sure what they saw on the CT Scan was in fact a Tumor. Sarah was is such pain that she hated the MRI it was loud and it hurt her head. She had to go to the restroom during the test, so they had to stop it and start it again when she came out. She was really kind of mad at them because it was loud and hurting her head. Now, she said she will never have another MRI again.
I was so glad to see one of my sister’s get there; I was talking to one of the housekeepers when she and her husband Bryan got there and we sat down and talked about what had happened. I could even tell Teresa was in some way shocked because you would never believe something like this is happening. She hugged me and told me not to worry Sarah would be okay. I just cried I was in shock I couldn't believe what was happening. It's like you hear it but it doesn't sink in yet. We did not tell her grandparents until she was settled in her room and we need she was somewhat stable. My husband broke the news to them as gently as her could.
She was taken back to the E.R. room where they were getting her admitted for Childrens CCU. Once we walked back to her E.R. Room my husband was there waiting for us as well as Jonah and Rachel and their boyfriend and girlfriend was with them. My other sister Helen was there and she just hugged me and wanted to know where Sarah was so we walked back to her room Sarah was really not sure what was going on and did not know why everyone was there. I told her that they found a spot on the back of her head and they wanted to take it out but not to worry she will be fine. Thinking to myself, “Oh my God, what is happening to her” I told her I would not leave her and I stayed the entire time with the exception of leaving for about 4 hours for a doctor's appointment.
The Neurologist, Dr. Wilson came in to talk to us “all of us” and explained that Sarah was going to be admitted immediately and that she had a mass on the lower part of her head right above her neck. The Mass was about 3 cm. in size that would need to come out as soon as possible. The pain she was feeling was due to pressure and fluid buildup on her brain. She was in a lot of pain. Surgery was set for Monday morning and if the pressure became worse they would need to place a tube in her brain to drain off the fluid to stop the pain and swelling immediately. She would be watched in CCU around the clock and her vitals were checked every hour.
We never expected this. I thought maybe she needed a stronger pain medication, not brain surgery. She is only 14 years old, she does not need to go through this she’s too young. During the rest that day Sarah was moved to a room with another patient, her name is Mykayla. By then it was early evening I think around 5:00 or so.
We saw little Mykayla her every time I got up to help Sarah though out the night and seen her peeking through the curtains in the room. The next morning it was early around 6:00 a.m. and Mykayla was standing by the nurses’ station, I smiled and she smiled. I said, I think my daughter is you new roommate, she said "well I think she is" she is such a sweet little girl and so tiny. After talking with Mykayla and introducing her to Sarah later in the morning, we found out a lot about her. She was actually 16 years old and a sophomore in High School. She is learning Braille she will be losing her vision soon due to a Tumor located near her Optic Nerve that cannot be removed.
During the 1½ days we were with her in that room she calmed Sarah and myself down quite a bit. She told Sarah all about her surgeries and what she will be going through in the operating room and how quickly they will put her too sleep and when she wakes up the surgery will be over. You see, Mykayla has been fighting cancer ever since she was 1½ years old. She has had 3 Brain Tumors and one that cannot be removed. Mykayla is a Christian and she has such a calming peacefulness about her that no adult I have ever met has. I fell in love with this child the moment she spoke to me. Her sweet little voice was so innocent it was like she was an angel sent there for Sarah.
After the second day, a private room opened up and Sarah's headaches were getting pretty intense so they moved her to a room where she would have more privacy and “quiet”. The first room was right by the landing area for the Lifeline Helicopter and it was a very busy weekend. We told Mykayla to come down whenever she wanted to see us, Sarah was restricted to her bed and Mykayla was able to come and go as she pleased. She did come down a few times to see us and we exchanged Facebook addresses and phone numbers and we have kept in touch with her and will be lifelong friends with her and her family. Mykayla has a Brain Tumor, "Pilocytic Astrocytoma" Grade 1, located near her optic nerves that cannot be removed, she will go blind and she has accepted it.
Monday October the 11th, 2010 finally came it seemed to take forever. Sarah was scheduled for surgery at noon and most of our immediate family came in to see her and pray with us before she was taken down to the operating room. She was scared; I could see it in her eyes. So many times I made excuses to go to the bathroom because I just couldn't hold back the tears anymore. Finally Sarah caught me and said "Mommy if you keep crying I'm not going to have this surgery". I told her I just couldn't help it, I knew she would be okay but it just hurt me to see her go through all this and if I could, I would take it all from her and go through the surgery myself. I promised her I would not cry anymore (in front of her anyway). When her nurse came in to take her vitals before noon, Sarahs heart rate was about 65-68 beats per min. then after the nurse stepped in another person working at the nurses' station came in and told her that she had a call from O.R. and Sarahs heat rate jumped to 125 - 128! We laughed with her and calmed her down.
As the Transporter came to pick Sarah up, the family there which was about 15 family members, my sisters, her brother and sister and others they stood outside her room and lined up both sides of the hallway and as Sarah was wheeled out, everyone held up their hands and wiggled their fingers "cheer fingers" and cheered her on, she laughed out loud and so did everyone else. As we turned the corner one of the Nurses sitting at the Nurse's Station in the CCU stood up and told Sarah she was a cheerleader in high school and she gave Sarah the waving cheer fingers as well. We were able to take the elevator down with Sarah and stayed with her until the anesthesiologist came in to ask questions. This was her first surgery. Then we were separated as Sarah was taken down another hallway and her Dad and I were able to walk with her, the other family members met us on the 2nd floor surgery waiting room. It was the hardest thing we had to do, let her go.
We kissed her and we did not say good-bye, we said we will be waiting right outside this door for you. We told her how much we loved her and that we would see her soon. I whispered to Sarah; don't forget Grandpa John will be with you holding your hand the entire time. My Dad passed away May 2003 and Sarah was very close to him although she was only 6 years old when he died, she still remembers so much about him. He would make homemade bread and Sarah loved it. Whenever she was hungry for
his bread she would call him and say "Papa would you make me some bread to I can come over and eat it?" He would laugh and tell her come on over Babe, I'm working on it. Even when Dad was feeling his worse, we knew that if she called she really wanted it and he would get up and make it, it actually made him feel better.
One day Dad kept Sarah for a few hours for me and he was laughing when my older sister Teresa came in and he said "Lord, I'm glad you got here, this little girl has been talking for 45 minutes straight and I didn't think she was ever going to shut up" they laughed and of course he loved Sarah so much he really enjoyed it. She has always just been a talker, and if she talks to you and you look away for any reason, Sarah will wait until you look at her and begin talking where you left off. She has always been that way. Others have had this same experience with her, her big round blue eyes would just stare into yours and she would talk and talk as long as you would listen to her. If you turned away to do something and not look at her when she spoke to you she would just stop talking and wait for you to look at her and then she would start talking even if it was 20 minutes. Once I looked back at her, she would start talking again right where she left off.
The surgery took about 3 hours which seemed to take all day! It was very scary waiting for her. When the surgeon, Dr. Young came out he told us that everything went great and he was able to get most of it. But then he said, we found another tumor behind the one I just removed but it’s in an area that I want to watch for now. He said she would be in recovery for a short time and that we should go up to her room she would be there before too long. We were so happy that it was over, yet still shocked when he said he got most of it. We didn't understand that part we thought he would be taking it all. Of course when you’re in a room full of people and basically still in shock from the entire process you just don’t think of asking any questions. That part came later.
When we arrived in her room we found her awake, looking beautiful and you could not tell she had just had brain surgery! She had a small tube in the back of her head coming out the top which was draining the fluid from her brain to reduce the swelling. This actually almost made me pass out when I seen it, I have such a weak stomach it’s not even funny. She was still groggy from the surgery and rested the remainder of day. The next morning she had gotten her appetite back when her Dad and I were eating brunch in her room. We knew if we started eating she just might as well, and she did. Sarah had a drainage tube in for the next three days, they were monitoring the amount of fluid draining from her head that had been building up for who knows how long, every two hours they came to check the amount draining. Sarah called this her
“brain juice” , Dr. Young was watching to see if the fluid stopped because that would mean the tube in her head was working properly. If it did not stop it may require an additional surgery. The longer the tube stayed in the higher her risk of infection which was not good.
“brain juice” , Dr. Young was watching to see if the fluid stopped because that would mean the tube in her head was working properly. If it did not stop it may require an additional surgery. The longer the tube stayed in the higher her risk of infection which was not good.
Dr. Young came in on Wednesday, October the 13 and said that he really wanted to see that she would be able to drain the fluid herself and if not he would do surgery again on Friday the 15th, 2010. This time was to place a Shunt in her brain that would be a bypass for the fluid to drain properly. Thursday afternoon he came in with his team and decided that she would need the second surgery. This would be scheduled for Friday and as soon as they had a time someone would let us know.
The day after her first surgery I had to leave to go see my doctor, I see a pain management specialist each month for my back and my knee. I was unable to reach them on the phone that morning after her first surgery which was Tuesday morning so I had to go. I was so hard to leave; her daddy was with her though so I knew she would be okay. When I arrived at the doctor and walked in it took everything I had to hold the tears back. Once I checked in and the nurse seen me I asked her if I could just pick up my prescriptions today because I have a daughter in the hospital and I need to get back to her.
The nurse called me back to her office and talked with me. I explained what was going on and that I just really needed to get back to Sarah. She asked me if my medication was working okay if I needed them to change anything, and I told her you know it’s so odd to be sitting here waiting to see my pain management doctor for pain medicine for my back and knee and right now; I can’t feel anything, nothing but my heart and it’s breaking so hard inside me I can hardly breathe!
Shortly after I was out leaving and another patient was sitting waiting to be seen and she rudely said to the nurse “Well If I knew I could see the nurse as well I’ve been here longer she just walked in” It took me a second to think that Sarah needed me more than that lady needed me telling her off. I’m sure the nurse took care of it.
During the entire stay at the hospital Sarah kept asking me to pray with her which is something she never had done before. I always prayed for her at bedtime she would come in and ask me to tuck her in, which I knew was come pray for me. But for her to be so afraid that she would say “Mommy, pray for me and we did”, she felt better. She told me that after meeting Mykayla, and with everything she had been through and made it, then she would be able to have one more Brain surgery, because she is so little I know I can do this. She was not able to get out of bed the entire time and her hair was beginning to drive her crazy not being able to wash it. She has always been very particular about her hair and her appearance.
Friday came which was October the 15th and we were completely shocked and terrified with what happened next. We expected to see her in the same shape after her second surgery as the first but nothing could prepare us for what was about to happen next. When Dr. Young came out for the second time and told us everything went great and he was able to place a small tube in her head and not do the Shunt we were so happy, he told us that again Sarah would be in her room soon and could meet up with her there. When her dad and I walked in to see her, we were completely shocked, I felt like my world was ending as I knew it and I knew something was very wrong, very wrong with Sarah.
I looked at her dad and I could see the same fear in his eye's that I felt in my heart. Sarah was lying on her bed which was completely straight back. Her eyes were wide open and she had no control of them at all. They were moving around at will and she was not able to close her eye lids at all. Her left side of her body was paralyzed and the Doctor thought this was just a temporary thing and it would be fine in a few hours. During this surgery when they placed the tube in her head for the bypass, they had to flush saline through the new tube. This would show them that the tube was working properly and he felt that it may have gone right by her Optic Nerve and caused the reaction she was having.
She actually was unable to move her left side at all, her arm she could not raise, her leg the same thing. We do believe she had a stroke during surgery. She was able to talk to us although it was just like she was a little girl all over again. She was talking a little like a baby and although it was sweet to hear her it terrified us as well. Her nurse was also concerned about her, Sarah was her nurse’s name as well and the two of them just hit it off from the very beginning. She was watching Sarah closely and was seeing that indeed, something was wrong. She was not responding how they had expected.
Sarah did not look good at all, both of her eyes were completely wide open and she wasn't able to control them. They were glassy due to the liquid tears they had to use in surgery and she was lying flat on her back. Not even a small tilt to her bed. She couldn't see us when we came in, she heard us and then said "Mommy, I can't see you yet, the doctor told me it would take a while for the medicine to wear off". My husband and I looked at each other and knew something was wrong. We were both standing on either side of her I was on her right and her Dad on her left. For a few days after this surgery if you stood on her left side, she could not see you at all. She would have you stand or sit on her right side.
Although Sarah was in bad shape that night after her 2nd surgery, the presence in the room was different, that part of it was so peaceful, almost heavenly. I could feel something in her room that I have only felt one time in my life before; and that was when we took my Dad off of life support. I knew heaven was waiting on him
Sarah's nurse kept coming in checking on her because the medication they had given her in the O.R. had worn off and her eyes were still as wide as could be and we had to place a wet wash cloth on them so she could sleep. I felt such a fear come into her room, just completely the opposite of which I felt earlier that day. It was also getting dark outside and everything began to look just that “darker”. I called my husband he had just left to take our son home and told him to try to hurry back up because I felt like something was wrong, I called my sisters and asked them to begin praying for Sarah. Her nurse had a funny look on her face and keep working with Sarah to get to talk and try to move her arms and checking her eyes. She “the nurse” looked at me and said, she shouldn’t be acting this way still, I’m calling her doctor and letting them know we need a doctor her to check her.
'When we thought we could finally breath again..,
'When we thought we could finally breath again..,
They were already planning a follow-up MRI in the morning to make sure the swelling was going down but due to the way she was acting so she contacted the on call Neurologist and they did a MRI “STAT” because of her vitals and her reaction to the surgery. She even knew something was wrong. Sarah was taken down to the X-Ray department and I followed with her. My family was texting me and calling to let me know they were all praying and everyone was calling everyone they knew. My nephew sent me a text that said "Aunt Becky don't worry, we are at a cookout and there's like 20 of us here, we all stopped eating and began praying for Sarah and she will be okay". After the results came back the swelling was going down and everything seemed to be okay they were just going to watch her very close through the night. I don’t remember her nurse hardly leaving her room unless it was to get something to bring back in. By morning, her vision was the same; she was able to lift up her left arm half way and then giggled when she did. She knew she was trying to raise her arm but it just wasn’t going to go up.
We noticed that her left hand started turning in toward her body as well as her left foot and each time we seen it we just straightened her hand out for her. Once she realized what we were doing, I would just hold her hand and she would tell me she loved me. Over the next few days she was slowly getting her movement back with her arm and leg the only issue we still had was her eye’s she could not see single vision and she could not look down or up just straight ahead. The doctor seemed to think again that this was some type of reaction after the surgery and would go away. You know in your child's life you expect to be there to protect them. In Sarah's case we would make sure not boy would ever break her heart, but this thing that was attacking our little girl we were helpless against. I know her daddy felt so helpless not being able to make it all go away and this made us feel horrible as parents. I always knew how to make her feel better when she had a fever or was sick, he always made her feel safe. This time we didn't know what to do.
The next few days, Sarah was so happy and loving. She was actually blowing kisses to people, and I don't mean just family. Her nurses and the doctors, the housekeepers, she was telling them that she loved them and made a heart shape with her right hand and would have them put the second part of the heart with their hand to complete the heart. Then she would tell them that she loved them. She honestly had nurses come in just to hear about the sweet patient on that floor and they all left with a smile on their faces.
She touched many people's lives and will continue to do so; I have no doubt in my mind about that at all. We eventually got moved to the next floor down and she was monitored every 4 hours and was eating and sitting up and finally got to go to the restroom. That was the next step before she went home she had to go to the restroom. One nurse told her that she would not believe how happy they get when a patient potty’s because it’s so important. They even had a potty dance that they do. Sarah loved that.
Sarah’s daddy started working cross word puzzles with her, she enjoyed the time with him and I was able to rest a little. She felt comfortable and close to us both and didn’t want us to leave her at all; she wanted all of her family up there with her. Back on the first day we were in the E.R. when Rachel Sarah’s sister got to the hospital, her and Jonah was walking back to her room with me and I hugged them both and told them, this is your sister I know she drives you crazy sometimes that’s what siblings do, but this time, this time please be nice to her and tell her you love her. I asked them if they heard me, they both said yes so I said it again she’s sick tell her you love her. It’s not that they are mean to her, their just typical teenagers and they just like to annoy each other.
When they walked in her room still Sarah did not understand why everyone was there, and Rachel said, because you’re sick dummy, of course teasing her because this is what she was used to. It’s what all kids do and how they treat their siblings. Sarah said “haha no kidding” then Rachel bent over and hugged Sarah, and she told her she loved her. Then, Sarah realized something was wrong if Rachel did that, she said Mom did you see that? Rachel said, yeah, well don’t get used to it. To this day, they all tell each other they love each other and that will never change.
The next day she was transferred from CCU to the Childrens floor where she was able to take her first shower in 10 days and was able to come home the next day which was the 19th. This has truly been a test of Faith for us and it's so scary to think of what she still has ahead of her. Her first MRI is Jan. 4, 2011 and she will have them every 3 months to watch the growth of the tumor she still has. If it's aggressive they will treat it the same way and possibly with Chemotherapy.
We do not know what is going to happen in January or April or July or the rest of the year. We know that she was sick; we know that part of the Tumor was removed. Now we wait to see if the Tumor she still has is aggressive or not. Brain Tumors are Cancer, they just go away or they keep coming back. We are praying this one goes away and never comes back.
When talking with Dr. Young, and ask what should we plan to do? He said let’s wait until her MRI and we will know what action to take then. We asked what if she gets sick again, he said to watch for high fevers, headaches or seizures and if that happens? Take her to Methodist or St. Vincent. He said St. Vincent this is where his office is and he will be closer to her. We just happened to get him the weekend we went to the hospital and he was on call.
October 25, 2010
We took her to see Dr. Young because Sarah started getting a rash on her neck, shoulders and back. He did not know what it was so we were sent to her family doctor which then it was treated with an antibiotic and is clearing up now. This has been so hard for us all, mostly Sarah of course. I look back at her photos that we have online and she went to Homecoming this year. Just two weeks later she was in the hospital for brain surgery. It breaks my heart when I see her happy smiling face and now seeing her lonely and sad.
We took her to see Dr. Young because Sarah started getting a rash on her neck, shoulders and back. He did not know what it was so we were sent to her family doctor which then it was treated with an antibiotic and is clearing up now. This has been so hard for us all, mostly Sarah of course. I look back at her photos that we have online and she went to Homecoming this year. Just two weeks later she was in the hospital for brain surgery. It breaks my heart when I see her happy smiling face and now seeing her lonely and sad.
I know my daughter has many friends and some have come to see her, but she is 14 and she is lonely and that breaks my heart for her. Her laughter is still with her and she is still as sweet as can be and each day will just be a new day of not knowing. I pray for her all the time and remind family to do the same. She wants to go back to school soon and once her strength is back she will. Until then, like my husband said "I believe your mommy has you re-attached to her umbilical cord Sarah, you might not ever get away from her" He's right; I'm keeping her close and as close to my heart as possible.
Still to this day, I feel shocked, I find myself just staring at things and people. I talk to small children all the time and I've told many people about my Sarah. I've told them to listen to your children, not only what their saying but what they’re not saying. It can save their life. I think after all this I will try to form some type of awareness letter to distribute to schools. So many people find problems with their children changing from school to school and thinking maybe drugs are involved. Maybe it’s not that, maybe ADHD is not as severe in students today as people think. Maybe it's tumor! or worse, just don't assume.
The same symptoms are those of Sarah’s Brain Tumor, Pilocytic Astrocytoma Grade 1. This is also the same Tumor her friend Mykayla has that cannot be removed due to the location. If a child is having a headache or falling behind in school now I know to tell a parent listen to your child. It’s not always drugs or someone being mean to them at school, in Sarah’s case it was a Tumor. We are praying so hard for a miracle for Sarah that this one is not like that, or better yet that it’s gone.
After research, it looks like this tumor is found in approximately 1 in 100,000 children per year in the United States and most of them are boys usually between the age of 9 and 10 years of age. This is a tumor that is usually found in a child that has had a head trauma and is getting a CT Scan and that’s when it’s found unless like Sarah’s she began to have severe complications.
Sarah wants to return to school and we have a meeting scheduled with her school leaders and teachers as well as her school nurse to discuss a 504 program that may help her get back into the swing of things and not fall behind. Her date to return is Wednesday November 18, 2010 if we have no complications. She misses her friends and they miss her and she’s very excited to get back to her life. It scares me that I can’t be there to watch her, I know she will be okay but it’s still scary. I want to do everything I can for her and her brother and sister these next few months. Sarah will have Thanksgiving then Christmas and then her birthday and then the New Year. They have had a pretty bad few years, we don’t know what will happen this time next year and I want to whatever I can do make this one a great finish of this year.
November 17, 2010
Today we had a meeting with her school today to return to school part time. She has a return to school letter from her doctor with restrictions of only part time, no PE classes, no sports and extra time for the homework and testing due to her double vision and handwriting.
Today we had a meeting with her school today to return to school part time. She has a return to school letter from her doctor with restrictions of only part time, no PE classes, no sports and extra time for the homework and testing due to her double vision and handwriting.
November 18, 2010
Sarah started back to school today just part time and it wore her out. She loved seeing her friends and her teachers and missed them and they missed her. The first person she went to was the school nurse; Jennifer and she hugged her. Jennifer has been a great support person for us, she warned us that something wasn't right with Sarah and that we should have her checked and then when returning to school she has been my eyes and ears for me making sure Sarah had a safe place to come to during school if she needed it. They spoke for a few minutes and then I talked with her and thanked her for watching out for Sarah. We spoke a few times while Sarah was in the hospital and I’m feeling much better knowing that she is there and Sarah can go to her anytime for anything.
During all of this, I see a side of her that I never noticed before. I think she had someone at school that she cared for like a boyfriend although she knows we would not allow her to date at her age. But you know your first crush and I just have a feeling there is someone here at her school that she has really really missed.
During all of this, I see a side of her that I never noticed before. I think she had someone at school that she cared for like a boyfriend although she knows we would not allow her to date at her age. But you know your first crush and I just have a feeling there is someone here at her school that she has really really missed.
January 4, 2011 will be her MRI date and next appointment with Dr. Young for a check up on the tumor. We will get the results of the MRI that same day and we are praying for a miracle and that this tumor is the same size which means non-aggressive or better yet that it’s gone completely. She’s practicing her handwriting now and colors every night is a large coloring book that my sister Helen bought her. She has only a few more pages in it and my sister Teresa is bringing her another one. She loves to color and it’s keeping her from being so bored. Also its great therapy for her left hand and she needs it.
November 23, 2010
She has been to school 4 days now and today is Tuesday and they are having a program at the end of school. Her principle just called me and invited me to come in they will be giving Sarah a gift that they all pitched in for her. So today after school Sarah was called up at the end of the day and today by the way she was in school all day! When the principle called her up in front of everyone, he told her that while she was in the hospital and had no way to talk to her friends and they knew she would want something for that so they all pitched in and took care of it. Sarah was so embarrassed she did not know what to expect so she went up quietly and then he had to dismiss the school to go home.
Sarah opened her gift in front of others that stayed like her teachers and friends and she opened a new Laptop so if she had to go back to the hospital she would have a way to keep in touch with everyone. This would help her with homework and the typing is easier for now than writing. We both were thrilled and felt so thankful. We had our Thanksgiving and had plenty to be thankful for mainly Sarah’s health but also a year ago we were all living in a one bedroom house because I lost my job and we lost the house we were renting. We are now in another house, 3 bedrooms still small but plenty big enough for our family.
Wednesday, December 1, 2010
Today is Wednesday the 1st of December and Sarah is in school she missed Monday and Tuesday because she was sick, but back to school today. She is now counting down the days until her birthday which is December 29th which she will be 15 years old. I feel old.
Thursday December 2, 2010
Today is Thursday and Sarah isn’t feeling well she is home today she also missed Monday and Tuesday this week with a sore throat. We were scheduled to have her tonsils removed mid-December but with everything she has gone through this year the tonsils will wait.
I just walked into Sarah’s room to check in on her it’s about 9:30 p.m. and it looked as if she had been crying, I asked her if something was wrong and she told me mom, you remember that boy that goes to the middle school that had that wreck? I told her yes, she said I think he died.
His name is Travis and he is I think 13 or 14 years old. He has been on life support after having a dirt bike accident and this was early November of this year. Sarah did not know him she did not actually go to school with him, but because he had brain damage and brain surgery I know this shook her up and upset her. I can only imagine what the family must be going through.
December 9, 2010
Today is Thursday, the first day I have had to sit and write. This past Saturday we were invited to a Christmas party the girls and I went and had a great time. Sarah still talks about a magic trick she saw and still trying to figure it out. We are looking forward to the holidays the first time in a long time! Even my son said “Mom, I’m really looking forward to this Christmas”.
I’ve noticed that Sarah is getting a little quieter than usual and had one day that she had a headache which scared me. She is in school and trying to get herself caught up. I’m a little concerned that she getting a little over tired, I’m glad the holiday break is coming up. She needs the rest and I want to spend time with her.
Although we are not sure where money will come from this year for presents we all know already that we have the most precious gift of all, life. God has brought us through some pretty terrible times but this surgery with Sarah has been the worse. We still have Jan. 4th, 2011 hanging over us like a big black rain cloud but we’re trying to stay positive and keep praying that she is going to be fine. Until next time, got to go pick the girls up from school.
January 14, 2011
Sarah had a great Christmas with the help of family and donations from a local company and was back to school feeling better for the first time in a long time. Her first follow up MRI was January 4, 2011 then we went straight to her surgeon for the results. Her last check up in his office was fine and we were expecting to hear that she was good to go or maybe the tumor has grown a little and they will check it again in 3 months.
We thought we would hear come back in three more months or it looks like it might be growing some we will check again in a month, not what he told us. To see the look on his face when he and his assistant walked into the room for the results we knew, something was wrong again. Her tumor had grown to the full size of the first one and would require surgery as soon as they could schedule it. He was surprised as well that the tumor grew so quickly we could tell it was not expected at all.
The good news of this all was Dr. Young told us about a new MRI that was being installed at Methodist Hospital and explained how much easier this will make it for him to remove the tumor and not touch the good cells. Her surgery was scheduled for January 17, 2011 and today I received a call from Dr. Young’s office stating that the MRI will not be ready, her new date will be February 2, 2011. Her doctor does not want to wait longer than this due to the growth of the tumor already; we never expected it to get this big so quickly.
Family is praying for her and we will all be with her the same as before, she has already touched so many life’s and does not even know it! I will write more later.
January 20, 2011
Today Sarah was over tired, and running a low grade fever. It has been going away with Tylenol but if she gets one and I can't get it down we will be taking her to the hospital. The things we are watching for are Headache, fever, vomiting and sever problems with her vision or balance. Although she has had double vision in her left eye since her 2nd surgery it would need to be worse to take her in. February 2, seems so far away when your waiting for a surgery and yet when I look at her and watch her fix her hair it breaks my heart all over again to know what she will be facing.
It just isn't fair that our children are the ones getting sick and it really makes me angry not only as a mother but as an adult that we do not have any say so when it comes to medical decisions when it comes to research. How can they just tell us they don't have enough information on this tumor? Enough study's have not been researched yet, why? No-one knows, if we could only find out maybe we could stop them from growing and taking over our child's life. Today is an angry day, I see her slipping into how she was acting right before the headaches started and yet I have to wait and watch her, it's so hard. I don't want her on that table and have her operated on again but it's not a choice for me to make.
I trust her doctor but still you have that fear deep inside your gut and it just keeps sneaking up on you; tapping you on the shoulder reminding you that it's still here. I hate that! I will update again later, I'm really feeling sad and angry today, maybe not the best time to write.
Today Sarah was over tired, and running a low grade fever. It has been going away with Tylenol but if she gets one and I can't get it down we will be taking her to the hospital. The things we are watching for are Headache, fever, vomiting and sever problems with her vision or balance. Although she has had double vision in her left eye since her 2nd surgery it would need to be worse to take her in. February 2, seems so far away when your waiting for a surgery and yet when I look at her and watch her fix her hair it breaks my heart all over again to know what she will be facing.
It just isn't fair that our children are the ones getting sick and it really makes me angry not only as a mother but as an adult that we do not have any say so when it comes to medical decisions when it comes to research. How can they just tell us they don't have enough information on this tumor? Enough study's have not been researched yet, why? No-one knows, if we could only find out maybe we could stop them from growing and taking over our child's life. Today is an angry day, I see her slipping into how she was acting right before the headaches started and yet I have to wait and watch her, it's so hard. I don't want her on that table and have her operated on again but it's not a choice for me to make.
I trust her doctor but still you have that fear deep inside your gut and it just keeps sneaking up on you; tapping you on the shoulder reminding you that it's still here. I hate that! I will update again later, I'm really feeling sad and angry today, maybe not the best time to write.
January 24, 2011
Today, Monday Sarah is back in school and she knows surgery is coming up. February 2 a week from this Wednesday is coming so fast. I want to get over this so she can get on with her life and stop the worrying. I don't know how to stop. I've prayed! Every single day multiple times a day. I tell her I love her every time she leaves the room and then I see her in another room. It's gotten so bad that she has said "Mom, I know you love me, stop saying it all the time".
I have a call in to Dr. Young's office and waiting for a reply, we want to check and make sure everything is still on schedule for her surgery and they had also mentioned giving her some type of test to check her motor skills and things that I'm sure they will be checking for after surgery. Just now I heard from Dawn, the scheduling nurse for Dr. Young and she told me that we would not be doing the screening for Sarah because she would not need it since her surgery is at Methodist instead of St. Vincent.
She did confirm that the surgery is still scheduled for Feb. 2 as long as the IMRIS is up and working properly, that this week is the actual first week they are using the machine and that Dr. Young did say he would not wait past Feb. 7th and if so she would be sent to another hospital in another state. So for now we are at the mercy of this new machine working properly because he will not do the surgery without it. So now we begin praying for IMRIS and making sure he/she is up and working properly for Sarah.
I will write more later. Please pray for Sarah and IMRIS, this of course with God's will is what will save her life! Information on this new MRI is located at this site, Just copy and paste this on your address line online:
http://www.canada.com/edmontonjournal/story.html?id=0e10140e-bbdd-404b-8f3f-1b5019386178
January 26, 2011
Today is Wednesday, 1 week away from Sarah's surgery, she had more pain today she said it felt like someone came up behind her and hit her in the back of the head! That's what is tumor is like, it just sneaks up on you and hits you before you even know what happened. After that she felt numbness on her left side of her back and arm. I called her doctor and they told me to watch her close and let them know if she starts a bad headache. It's hard not to take her straight to the hospital and have them check her, if it gets worse I will. I can't stand the thought of her suffering and not being able to do anything for her. She's taking a nap and it's 6:37 p.m. which is normally her time to talk to her friends and we hear her laughing, now she's quiet.
We will just keep praying for her to stay well until she can have the surgery she needs.
February 2, 2011
We arrived at Methodist Hospital for Sarah's second Tumor removal and this surgery took 9 hours! This was the hardest yet on her and she is very sick. She is running a fever and throwing up a lot. It's going to be a long night for her. The morning after on the 3rd, Dr. Young has scheduled her follow up MRI to see where she stands with how much was removed. As of last night her felt her was able to get 90% of it but was not sure. Not until February 5th did we find out that she tested positive for the Flu, what else can this child take on.
After reading the results we found that she still has part of the tumor left and will need further treatment. It has been a roller coaster ride for the last 20 days, we have now been at Methodist for 20 days and she may get to go home on Tuesday the 22nd. We have been in rehab since the 9th. This has been horrible for her and us we almost lost her due to a Hugh drop in her sodium for God's Sake! She didn't even know who we were and could not talk to us. She developed a condition called Cerebellar Mutism which is common after this type of surgery which would have been nice if someone would have warned us! More later when I have time to put my thoughts to words, there's just been so much!
From her rehab for 15 plus days it has been so hard to stay away from my other children but cannot see leaving Sarah alone in the hospital. The days were long, she worked hard to get better. She started talking again, walking again and slowly we knew she would get better. Sarah and I watched Lots of shows together, everything positive. Funny things that took our minds off of what she was going through. We love watching Ellen, she always makes us laugh. We stayed as possible as we could but it was so hard.
After her meeting with Dr. Young after her 2nd surgery he told us that we will be meeting with Dr. Goodman a Pediatric Neuro Oncologist and Dr. Leagre with Radiology. They together will have a plan when we meet with them on March 2, 2011 at 9:30 a.m. Chemo or Radiation or both we will not know until then. Sarah is resting at home and I'm working with her on basic homework pages and exercising with her to keep her moving. She is very quiet and seems sad and lonely. I hate this part for her especially, I know she's confused and not sure what or how to ask. We talk to her openly about everything and she seems okay with the honesty and handles it well.
I will update the blog after our meeting on March 2nd. Until then Sarah will be taking Outpatient Speech, Physical and Occupational Therapy at Methodist Hospital. It's time for her to have a break, she's been through enough.
March 2, 2011
Today we met with Sarah's new doctors for Oncology and Radiation Oncology and her daddy and I both feel good about them. They took the time to talk with us and answer all of our questions. The plan will be that they will be reviewing her MRI's from October 2010 and compare them to everything up to now and see what they feel her best treatment will be. We should hear from them the first of next week and to also schedule another MRI here very soon.
One doctor did say she would find and eye specialist for Sarah because her vision is on only double in her left eye she also has blurry vision in her right eye. The right eye comes and goes although both eyes stay dilated most of the time. We realize that we still have a long way to go and that Sarah has so much more to go through also she has also came so far. She laughs a lot and smiles as well which we love, I will be so glad when we see that she understands what is really going on and is able to communicate with us.
Sarah's school has been in touch with us and will be ready for her when she returns and she want too, we just want to make sure she is ready. It will be 1/2 day in the mornings and she will do much better when she is around her friends again. For her to go through all this, I am so glad she is where she is and has the support she as well as us have through the school, her school nurse and her friends.
March 15, 2011
This past weekend was a hard one for Sarah after a month from her surgery, her scar has become inflamed and we took her to the ER on Friday night to have it checked. They did a CT Scan and blood work and found that she has some type of infection but other than that to keep an eye on her fever and if she has any other problems bring her back in. The doctor felt that since she had been through so much already instead of putting her in the hospital he would send her home. Saturday morning we woke up to find that she was doing about the same, no fever just the tender spot on her head.
Sunday morning however was a shock. We woke Sarah to find that the inflamed area ruptured and she looked like someone had sneezed in the back of her head. The area had opened and started draining infection out. We called the on call doctor and since she was not running a fever we were to just watch her keep the area clean and call her doctor Monday morning. All went fairly well the rest of the weekend and on Monday morning we called her doctor and he felt that since she was seeing him on Wednesday that unless she had other systems she would be seen then.
Tomorrow is Wednesday, she has an MRI scheduled which will be six weeks out from her surgery and she will go then to see her Oncologist and Radiologist to see if the tumor has grown. Later in the day we meet with her surgeon. I will update more tomorrow.
March 23, 2011
As of today, Sarah has had several therapy classes and will begin all three OT, PT and Speech next week one Tuesdays and Fridays. She is talking more and her laughter is still wonderful! She still has the vision issues that will be addressed on April 5, 2011 and she still has weakness in her left hand and arm. I've noticed she's back to just dropping her left arm and not using it as if she has forgotten it is there. So we will begin forcing her to use her left hand per her doctors to get her back to what she was doing before everything started in October.
I really wish there was an awareness group for parents with children with Brain Tumors like hers, there's not enough information on them and the doctors only tell you what they want you to know. Maybe I need to do this myself and post it as many places as I can to help others that may not have to go through all the shock we have. I know that Sarah and I will volunteer at the hospital when things are better for her. Like herself many teens that are going thru this can't really talk to their own friends because they are afraid they will be judged and looked at differently and as much as I want to believe differently I know she's right. We talked about volunteering after she's back on her feet and go to let her talk to teens that were in she shoes and I can talk to parents being able to get things off your chest is really important. It's a way of healing and we all need it.
Sarah has more appointments coming up over the next two weeks to check her eye's another MRI and a visit with all doctors so she will be a very busy young women. Yesterday we were at Methodist and as I pushed her around in her wheelchair I noticed how many people will just stand in your way, not offer to help hold a door and they just stare at her. One of these days' I'm going to say something and I hope the lobby is full enough that people will hear me say; she's a young girl that has been through more than any of us ever will! would it kill you to step aside, open a door, smile at her and maybe even say hello to her? It's just makes my blood boil! I can't believe how rude and uncaring they can be.
March 30, 2011
Yesterday, we took Sarah in to see a doctor, her's is on vacation. She has an infection in the back of her head Dr. Young said it looked like an infection and would be testing for it. She has a CT Scan tomorrow we will see.
March 31, 2011
Today we took Sarah in for her CT Scan, her doctor will be on vacation until next week so we do not expect to hear anything until then. Of course, we asked the tech that helped her and they cannot comment on what they may have seen or not seen. This is the hard part, waiting just to hear it's okay.
April 2, 2011
After we returned home with Sarah after her CT Scan, she had two friends come over, it was so wonderful and music to my ears hearing her laugh with them while they sat in her room catching up on everything missed over the last few months from school. She has an exam on Tuesday the 5th with an Neurologist / Optometrist to check her double vision in both eye's. This should tell us if this is a temp. or perm. condition with her and if it can be corrected with new glasses or surgery.
I miss her so much being her, and often I think of how she would take an hour to put her makeup on her eyes that she wore a lot but just the right amount to bring her beautiful blue eyes out in the almond shape that she got from one of my sisters. She looks just like my younger sister Helen when she's sleeping. I would hate to think of her not being able to see again the way she did before all of this. But then I remember that we still have her! God answered our prayers already! We prayed that he let her live and he has, and she's getting better every day.
To hear her talking to others melts my heart because I will never forget the day that she stopped talking to us and how I longed and begged God to let her come back to us, that we will be better parents and that we loved her so much! He gave her to us to take care of she is a blessing to us from God and I know myself I just felt like such a failure as a mom to her not being able to give her the things I want to give her and seeing other kids her age going on vacations and owning their own home. Knowing that we were homeless and ending up with 5 of us living in a one bedroom house. At one point before that the girls stayed with their grandparents our son with a friend and we stayed with in laws. Sarah would call me every night and talk to me before she went to sleep as if I was right there with her. This of course was the times that I didn't stay with her until she fell asleep.
Things that parents take for granted is unreal! God gave us children as a gift to take care of for him, and to see all the mistreated babies and children in this world just breaks my heart. Sarah now gets on me because I tell her I love her several times everyday, now she reply's with "I know". I told her it's because I just love her so much I never want to be without her and I'm sorry for what has happened to her, she just say's Mom it's not your fault" but I still feel like I missed signs.
When I can, I read what I can find on her tumor and why it happen and how it happened and then I run across information on the American Cancer Society website about different types of cancer and find her tumor and what the statistics of living are and it scares the life out of me! Be careful what you read on line because it's not all true and each tumor is different way. Sarah's is Slow-growing "right" but they grade tumors of benign or cancer by the way the cells look. Her first surgery the cell separation was 1 % and the second part of the tumor was 2 -3 % separation. Once the cell separation gets to about 10% they will raise the grade of the tumor which then changes the type of tumor. I kind of understand what they are telling us and still miss so much of it.
Now is when I wish I had payed more attention in Science class! This has differently been a crash course on sickness of a child, how to deal with stress of it and how to take care of them! Its so so very hard but you just don't think about it at the time, there's no time for that you just do it. She has a lot coming up, her eye appt. she has the results coming back from her CT Scan to check for brain infections and she will have another MRI in May. She want's to start back to school as soon as her rash clears up on her face and when she of course can see so she can walk better.
It's been hard, looking back at everything. This blog helps me, so much has happened that I haven't mentioned believe it or not! It's just so much. I know how much we love her, I know we will take care of her all the time no one else will have too, I know that we still have a long road ahead of us to travel and we have met some wonderful people. I know that it has opened my eye's and heart in a way I never knew I would feel or see and I do honestly know now that this is all for God's reason's and he knows already where we are going to be and what will happen each day from here on out.
I'm afraid just like any parent would be but I will never never ever give up on my daughter! We are signed up for Relay for Life this June and when I get more details I will share them and add a link to our webpage. So far she has not needed Chemo or Radiation but we have met friends that have and if one day this would happen we know we will have the help she needs. I asked Sarah to think of a name she would like to use for our team and she didn't know what to use so I picked it. She informed me that she did not agree to it, but I told her it fits her perfectly, "Sarah Smiles". She smiles and laughs through all of this now and is as happy as she can be, I know she misses her life as a teenager, we will get her back to that with God's help. I will now use for my title instead of "Mommy, I can't see you. We are in a new phase of her healing and each day will be a new beginning. Pray for us.
April 29, 2011
It's been a while since my last update, Sarah has been in Speech, Physical and Occupational Therapy this month, twice a week and it's wearing her out. She's getting stronger and better each day. She will start back to school on Monday May 2, 2011 part time, just a few weeks left of school but she misses her friends and is pretty bored at home with me. She has had rough time and still; she continues to smile :) I love her so much I want to protect her from everything and anyone that could hurt her.
She has a follow up MRI on May 17th and then we meet with her Brain Tumor Clinic Doctors to see if she has any changes. She will also have a followup with the Nuero-Ophthalmologist on May 31st to see how her vision is changing. She still has double vision in both eyes, we use paper first aid tape on her glasses and rotate it so she can see enough to get around. She is talking more, taking her own showers and making her own snacks. That's so much compared to where she was a month ago.
We are keeping up with family and friends on her health and time is flying by but yet it still feels like I am moving in slow motion and still in shock this has only been 6 months! Day to day, that's all we can do and pray for her all the time. I find myself just crying over anything now days and I have to walk away by myself for a few minutes but I'm so glad to still have Sarah with us! I love my children and I don't think I could even take another single breath without them with me.
May 7, 2011
I actually heard from another Mom this week, Mandy. She has a very young daughter that has the same tumor Sarah had. It was good to know that someone out there was able to get some information from my Sarah's story. I look forward to talking with her in the near future.
So this past week was Sarah's first week back to school and it was a bit hard on her, not only physically but emotionally she has many friends that just wanted to know "what the heck happened to you?" She smiled and told them. She will go thru the month of May and then off for the Summer but at least she was able to get back in school before the year ended. She has a long road ahead of her, but she just keeps on smiling, that girl!
It is sad to see her friends move on and she is left behind to take the year again but we will help her get through it. I have to say I'm getting a little worried about her upcoming MRI, May 17th. This will tell us if in fact she had two tumors or one big tumor. If it has changed she may have to go through the Radiation that we dread but it's better than surgery! Because this blog has become so long, I will end this part of her story with this last update and start a new one as of May 17th. That will be the beginning of a new adventure as Sarah and I call it, we make the best of it however we can. Her daddy is right beside her and here for me, he's not sure what to do but make sure that she knows how much we both love her, he calls her his "Cutie Pa Tutie" and she loves it.
Tomorrow is Mother's Day, May 8, 2011 and I just hugged Sarah and told her she smells like honey! She said why? I told her it's just because she's so darn sweet! Love your children as if you will have no tomorrow, encourage them to keep fighting no matter what and then; take your own advise and never give up having Faith!
Until May 17th, thank you to anyone that this story has helped and please let me know if it did, and I would love to hear your story as well. I too need encouragement and a friend to compare our war story's with.
Take care, Sarah's mom "Oh and one more thing, she just asked me if I loved her more than her sister and brother and I told her yes, but don't tell them I said that"! She laughed and said " I will". They both of course know I love them all the same.
May 17th!
Today we received wonderful news! No regrowth!!!! We love her so much and thank God for everything he has done for her and for us. This is the best belated Mother's Day I have ever had! A new MRI will be in August.
June 28, 2011
As of this day and month, Sarah is doing about the same. She has still slower movement with her left side and that being her dominate side is still shaky. She is doing better with talking and communication with everyone although she is still very shy and backwards. Still taking therapy classes and in August she will have her next MRI and brain tumor clinic.
August 30, 2011
We just lost my husbands father, Edwin F. Crouch passed away at home on August 29, 2011. We lost a loving and caring man and he will be missed so much. Please pray for us.
October 1, 2011
We have now been evicted from the house we were renting. With Sarah being in and out of the hospital and time was lost for work and we got behind in rent and now it has caught up with us. We will stay with someone to stay off the streets. I am grateful for this blog to keep me sane, I'm able to write my feelings down and try not to break down. Sarah still needs me and I need her.
October 14, 2011
Sarah had her MRI in late August and we got great news, NO REGROWTH! We are so happy! She is still working on speech, her writing skills and social skills. This year we are homeschooling her through a state charter school. Her attitude has been wonderful and still no complaining at all. She lost her Grandpa Eddie on August 29th, 2011 and this was a hard time for her but with everything she has been through her response was very calm and non-reacting. This is still part of her therapy. She is doing good, but we will keep praying for her.
October 24, 2011
We are working on Sarah's school online and so far so good. It's hard to keep her focused but she's doing it and really trying her best.
Have Faith.
November 11, 2011 11-11-11
Today is Veterans Day and we miss Grandpa Eddie. He always loved this day and loved the celebration's. This year we have so many things to be thankful for and with Thanksgiving just around the corner we are happy to say we found a house, and moving in on November 15th or so. So this year we will be so happy to have Sarah, have our health, have a place to live and each other.
Her next MRI will be in late December or early January and for now she's doing great and getting better every day. If anyone had to go through this, it's so hard but you can do it, just keep praying and never give up faith!
Big news today! Sarah's sister Rachel and her boyfriend Brady have become engaged! He asked her at her favorite place here, the Zoo! She had a class at the Zoo today, very cold and windy out and he found the perfect location with no-one around and asked her. We don't have a wedding date yet, no hurry she wants to finish college first.
December 9th, 2011
The MRI was today, we see her doctor next week, a little different planning this time. But we have a good feeling about this time.
December 13, 2011
MRI results today; Wonderful news, no re-growth! We were so happy to hear this now she has two in a roll that she has clean. Next MRI will be in March which will make her 1 year Brain Tumor Free! What a party this will be!
December 29, 2011
Today Sarah turns 16! Wow how time just fly's by. I can't believe it. Sweet 16.
January 1, 2012 Happy New Year!
This day will be the beginning of a new year and healthier one for our Sarah, we just know things are finally changing for our entire family.
January 11, 2012
Sarah has been complaining of neck pain for a few weeks now, not headaches and it goes away with medication but today it has actually made her cry! This was the first time I have seen her cry since her second tumor was found on January 4th, 2011. We took her to the hospital just to be safe and found that her CT Scan was clean, and it appeared to be muscle or arthritis pain. We will now need to watch for weather changes and be ready to treat arthritis for her.
I don't think I can stand to see her suffer any more with this. She never complains still she still smiles!
May 4, 2012
So far all of her MRI's have been good. Double vision is still a problem now this week we found out she has a rare eye condition called "Superior Oblique Myokymia" This will take a lot of research. If anyone has any information on this please send me an e-mail.
May 11, 2012
Sarah has has a headache and backache for 4 days now. I called her doctor and they are going to do a CT Scan next Friday the 18th to find out if something is wrong. Shes having a few things going with her and will feel better knowing all is okay.
May 18, 2012
Her CT Scan was good no new signs, I guess we are just over protective sometimes. She does have her MRI's every 6 months now and will have one in August. I will begin a new blog at that time keep up with me, and ask any questions that you want, it helps to have someone to talk to.
August 2012
Two years tumor free! Shes doing great with everything she has been through. She still has the vision issues but one day we pray they will get better as well.
October 9, 2012
Two years to the date when we received that horrible news. She is a fighter and still not complaining, she has had her bad days and things have gotten to her, but, even after all the testing surgery's and rehab she still never complained. This daughter of mine is my hero! I love her so much!.
Keep the faith!
Sarahbear, we love you so so much!
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