Kalecia, You are such a brave girl and I want you to know how much I love you. Keep on smiling and being the strong sweet girl that you are. We pray for you every day, and constantly send positive thoughts your way!
I just wanted to say we love you bunches, you are a brave girl and I admire you for that. Ethan and Riley say they love and miss you too! Tony sends his love as well, keep being strong and know you have lots of love and support out there! We miss you all, take care! Feel free to call or email me anytime!
xo, Rebecca and Family
((((HUGS, HUGS & MORE HUGS))))
Rebecca Denning rebeccadenning@hotmail.com Allenhurst, GA
I would like to let you know you are in my thoughts, and will be until you make a nice recovery :). I have had a friend go through something similar in the past few years and she is doing very well now, I wish you the same :).
You are such a brave little girl. I know that your positive attitude is going to help you through all this! Keep up the smiles and you'll be better before you know it! I know some days are hard for you, but remember that you have friends and family all over the world praying for you.
Hi Kalecia, We have 4 girls and we homeschool also. Our youngest daughter has a tumor in the same area as yours - so it sounds like our families have a lot in common - and we have lots of animals too. Chickens,frogs, and African tortoises to name a few. We are looking forward to reading your story that you are working on. Love, The Welch Familywww.valeriegrace.com
Hi Kalecia and Family, I've been reading about you on the PBT board. My daughter, Hadley, is 5 years old. She was diagnosed almost 2 years ago with a tumor in some of the same spots as yours. She has been on several different chemo regimens including Carboplatin and Vincristine. Her hair did thin out a little...but she's been on 8 different chemo drugs and her hair has never completely fallen out. I know it would be so hard for you, especialy at your age, to deal with that...so, I'll keep you in my prayers that you are spared that possible side effect. Ki...I know the feelings that you shared on the board quite well. They are difficult to shove aside...you are an excellent mother...it is clear that you are taking excellent care of all of your children...rest assured in your love for them and if not only your ability to care for them, God's ability to care for them. Kalecia is in His hands now just as she was before her diagnosis...He was caring for her and watching over her. Rest assured in that mama. =) I know that is hard...I still struggle with it. =) I know the first months are a difficult whirlwind of emotion and fear of the unknown. Hang in there. You are doing hard work and you are doing an excellent job. With Love and HOPE Hadley's Mamawww.caringbridge.org/ca/hadleyfox
Angela Fox foxfamilyfive@sbcglobal.net Alameda, CA
Hello Kalecia, My son Danny also has the same tumor in the same location as you do. He is 16 and is doing good. They found his tumor when he was 6, so to him it is a part of his life. I know how hard it must have been to hear that you had a tumor, especially one that cannot be removed, but from what I read in your journal, you are a very strong girl with a lot of faith. That alone will make your treatment so much easier. While Dan was on chemo, he led a very normal life. He went to school, played sports and did everything else his twin brother did. He also has two sisters and one other brother. He will be going away to a college in NJ for four weeks this summer to prepare him when he goes to college in two years. So as you can tell, things can be pretty normal for you. And that is what we will pray for. Tell your mom to hang in there. It is really hard in the beginning, but this is a very doable thing. And unfortuanely it becomes a very everyday thing. Ugh! Prayers, Kathie m/o Dannywww.caringbridge.org/visit/dannyhohman
Hi Kalecia. My thoughts and prayers are with you. I sent your mom some pictures I hope will help cheer you up. I haven't seen you since you were in Oregon. I hope everything turns out great for you.
HELLO KALICIA, I PRAY THAT GOD WILL TAKE CARE OF YOU AND YOUR FAMILY. I KNOW YOUR MOM FROM INTERNET,,,,,,YOUR PICS ARE BEAUTIFUL. KEEP GOING, DEAR, AND DO NOT GIVE UP.
Kalecia What a strong and happy girl you are. Keep up the good attitude. I have you and your family in my thoughts each and everyday. Take care..... hugs Shauna
This is your Aunt Lori. I just wanted to let you know how very proud I am of you. We love you so much and pray everyday that you will have a great day today and feel good. Always remember that you are a child of God and he loves you and will be there with you always. We will be praying for you everyday and thinking positive thoughts for you always.
It's your wishgranter! I am so excited to have met such a great girl and what a nice family you have! I can't wait for you to go on your wish and I hope it's a magical experience for you. Take care!!!
Natasha
Natasha Woodside natashaupchurch@hotmail.com Salt Lake City, UT
I spoke with your mom regarding your grandad's insurance and she told me your story. I know a 16 year old (diagnosed when she was 5 with terminal brain cancer) named Karis who is cancer free and has been for over 9 years. She went through a brain surgery and radiation therapy at age 5. She finally went to a homeopathic clinic in San Antonio, TX when the doctors at Children's Hospital in Dallas, TX told her parents that there was nothing else that they could do. There is hope. Hang in there. My prayers are with you and your family.
Know that Connor and I love you very much. We are praying for you and your family. I've asked all of my closest friends and O'Hagan family to add you to their thoughts and prayers too. I am sending their responses to your mom's e-mail address (kifive@hotmail.com) so she can share them with you. Your sweet and loving spirit is amazing and I can't thank you enough for the example of strength and courage you constantly give us. I am so happy that you got to swim with the dolphins! I hope you dream of the dolphins during your surgery and recovery. Please have your mom keep us posted on your progress. We look forward to seeing you soon.
Dearest Kalecia, Bina, Charles and Xaphya send you the warmest of best wishes and prayers that you come through your surgery and later the recovery healed and whole. Karoline, biggest of hugs to you for being such a brave MOM. You know where to find me if you need an ear to ramble on at anytime. Your friend, Bina (aka TattingBina) http://www.paradisetreasures.com
Bina Madden tattingbina@gmail.com Everett, WA
Oct 25, 2006 3:21pm
Hi Ki I hope all goes well for all your family. Kalecia has a big part of your heart, as do the others, and I am sure all will go well for her so that she can keep filling your heart with love.
hey lil sister you are strong an i am proud to have known you for a short you a beautiful spirit who shines like a star in th morning lite my prayer is you will see your future!!!!!!
I am your father's Aunt Dana Huls Hardy. I live in Kentucky. What a beautiful picture of you with the Dolphin!!!
Prayers are being sent out in the AM and PM each day for you to be able to handle the challenges you are dealing with. Also for your Mom and Dad -- because of how much they love you, this is hard on them too. An extra prayer will be sent out on the Smoke from Sage and Feathers in my dawn greeting prayers.
Blessings to you and all whom love you,
Great Aunt Dana
Great Aunt Dana Hardy danaghardy@sbcglobal.net Louisville, KY
I have been looking at all your pictures from florida. It looks like you all had lots of fun. I would love to swim with the dolphins. I hope everything goes well with the surgery on Monday. I wanted to tell you Happy Birthday also.. I know it is early. but Happy Birthday anyways..
Prayers continue to be sent to you and your family for all of your Highest Good from Our Creator. Hoping all has gone well with the surgery! You remain in my daily prayers..
Your
Great Aunt Dana Hardy
Great Aunt Dana Hardy danaghardy@sbcglobal.net Louisville, KY
I just want you to know that I have been thinking about you all day, and pray that all went well. I sent your Birthday present to your house, so it will be waiting for you. All my love and well wishes.
I wanted to send a happy birthday thought. And tell you are prayers are with you and we love you. A Special Day Today is a special day more special than the rest because this day brought you to earth my very special friend ! Rex Anne Echeverria
Rex Anne Echeverria echeverria_ink@msn.com Cedar City, UT
I wanted to send a happy birthday thought. And tell you are prayers are with you and we love you. A Special Day Today is a special day more special than the rest because this day brought you to earth my very special friend ! Rex Anne Echeverria
Rex Anne Echeverria echeverria_ink@msn.com Cedar City, UT
Dear,Kalecia i hope you are doing fine. i have been really woried about you. you and your family are the best friends anyone could have VerdaKay Pullman
Connor and I heard the wonderful news last night from Grandma Huls! We are so happy that surgery went so well. We've been praying for you and continue to send you all of our love.
We hope you have a wonderful birthday tomorrow. We are sending you something special.
Just wanted you to know I've been keeping you all in my thoughts and am so glad Kalecia's doing okay. Will continue to check this web page for updates!! I'm glad he was able to get 50-60%, now I just hope for a speedy recovery for Kalecia.
Natasha
Natasha Woodside natashaupchurch@hotmail.com Salt Lake City, UT
This is the first time that I visit your website. You are such a gorgeous girl. And so is your family. Today is your 14th birthday and I wanted to wish you so much happiness. I know that you have just had a serious operation and will be in quite a bit of discomfort for a good while, but once you are feeling better I hope that you will be blessed with lots of smiles, love, and good health. Many special hugs & kisses, Denise ~ ChemoAngels
Denise Yates
Nov 5, 2006 10:28pm
Dear Kalecia,
I am so glad that the surgery went well. We just wanted to let you know that out thoughts and prayers are with you. It won't be to long I hope that we will get to see you soon. We love you and think of you often.
Hi Kalecia, I am so glad that everything went well with your surgery. I am glad that you are feeling better and just wanted to wish you and your family a very Happy Thanksgiving. Much Love
I will keep your family in our prayers. May God continue to watch over you as he as done. You all have a wonderful Christmas and a Happy New Year. It is good to see that God is still working miracles.
Hey Kalecia...this is neato that you have this place..i never knew they had this place her..hugs to u from cassiandra..hope u get better soon praying for u...cassiandra
Hi Kalecia, nice site you have here. hope you are feeling better. Heard you can't keep you nose out of the books now :-) . Just wanted to stop by and say hi
HIIIIII kalecia...i hope everything is going well..i am praying for u...hugssssss to u and kifive..miss talking with u both..hehehe i hope u two have fuN ROFL...i am thinking of u two!!! Kalecia...keep strong in god..he'll kick away anything that is in ur path!!! stay strong sis!!! luv cassiandra
I've known your mom for a few years now, she's a great person, and I'm sure you are too if you're anything like her. I'm sorry to hear that you're having problems, and I hope you get to feeling better soon. I've heard this in the past and I believe it with my heart, God never puts anything in your path that you're not great enough to overcome.
I am glad to hear about you doing so well...I hope that things get better for you and continue to stay along the course of god's will being done inside of your life!!! God bless u kalecia
Kalecia, this is your Great Aunt Dana whom currently resides in KY., I knew your father as a very young child when he was living with his birth parents in Washington. I am a very spiritual person and send out prayers and Reiki Universal Healing Energy to you every Sunday at 2 pm EST... I love the picture of you with the Dolphin. The Whale and the Dolphin are very evolved spirits from our Great Grandfather God.... May you continue to heal and realize the reason for your current experiences.... they help us all evolve...Blessings to you, AUnt Dana
Great Aunt Dana Hardy danaghardy@sbcglobal.net Louisville, KY
heya kalecia!!!! I am SOOO proud of you for hanging in there and being a trooper hon. I hope we get to talk again sometime soon. I am always praying for you to get better. I also put your name in the temple. I pray you are healed of all things. Much love
What a beautiful name you have!! I am your Great Aunt Dana from Ky...who continues to say prayers for your Highest Good. I am registered as a Native American Cherokee... Have you registered as a Native American? It is a wonderful feeling to have that connection in the physical world as well as the spiritual world!!
It is so wonderful that you continue to walk this pathway inthis lifetime. Blessings to you...someday we may meet...I suspect it will be int he spirit world..as I doubt I will travel again out West...
Hi, Kalecia -- glad to hear the migraine headaches are better controlled now! When I was younger I had migraine headaches so I know how miserable they can be. Are you glad to be back in school? Kaylee and Jace were here today after school, and they are happy to be seeing their friends again, and they both like their teachers. They are 5th and 1st grade - 10 and 6. Jessalyn is a junior in high school -- says she "loves" school -- so far!
We'll be saying a prayer that the MRI next week is all negative for any changes except for the better! Will be checking back for an update!
It is wonderful that you are attending High School. That has to be fun for you!!! What is your dog's name? Do hope the MRI shows a good report for you!
Love and Blessings,
Great Aunt Dana
Great Aunt Dana Hardy Louisville, KY
Sep 28, 2008 9:43pm
Hi kALECIA,
I am very glad to hear that you are doing well. It sounds like things are going well for you. I don't know if you remember me but I was your chemp Angel a while ago, and it is so good to hear you are doing well. Take care of yourself and know how loved you are. talk to you later.
So happy to hear about the good MRI report. Also that the doctors are paying attention to the "little" things like early morning headaches ("little" in comparison to the tumor, I mean), before they weigh you down with worrying about them! Hope the Excedrin does the job. Hope you are all enjoying the beautiful fall ... our love to you all ...
Kalecia, wishing you and your family peace and comfort,, hoping you get completely healed from this cancer..I never knew this cancer existed til your mom told me, I am educating myself on this.
HI Kalecia, I am glad to hear that you are doing well. WOW a sophmore in high school! thats awesome, and that means turning 16 ! take care of yourself and may god continue to bless you and your family. Love Angel Robin
Kalecia! I love your prom pictures. How fun they let the daddy have the frst dance. You look like a princess! I am so glad to see your doing well. Hope you have a great summer :-)
Hi, Kalecia -- glad to hear you are doing well, were able to attend the Big Dance, and had a fun time! Wonderful! Keep up the good work -- this time next year you'll be dancing again as you pick up that Diploma! Love, Aunt Bette and Uncle Bill
The last two days of Febuary we discovered that Kalecia was blind in her left eye. The eye was fine, so they knew it was something behind the eye. We got her in for an MRI, and could see ourselves on the scans, something that we knew didnt belong there. We had to wait tho for the Dr. to call back with the results. At that point he told us they suspected a optic nerve glioma.
Kalecia has been great and positive thru the whole thing. I have been so amazed with her. She is more concerned about me being upset, then for herself.
On 3/09/2006 we met with a NS at Primary Children's, and was told he was giving our case to an Oncologist. My heart dropped. I was hoping for answers then. I was praying he would say "lets get that out now!"
The opthamologist doctor had told me the possible steps will be to do surgery, radiation, or just to observe it. Which none of those sounded good to us.
After we walked out of the NS office with an appointment for the next day with an oncologist. I wanted to cry. Kalecia turned to me and said "my prayers were answered mom, they are going to do something, they arent going to just observe it." What faith! While i was wanting to cry because of the meaning of being sent to an oncologist, meant Cancer! She is thanking Heavenly Father because she was concerned they wouldnt do anything!
The next day i was trying not to cry, and be strong for her. She came and put her arm around me and said "Smile Mom! There isnt anything we can do but make others feel better." So i have done my best to put a smile on :)
The oncologist told us the diagnosis, and even today i am not totally sure yet, what it all means or is exactly. But i will put in what the nurse told me was written somewhere in the paperwork. A optic pathway hypothalamic tumor.
They don't even know where it is originating from. She said they can not tell if it is off of the optic nerve or from the hypothalamic area.
But because of that area, they do not believe they can do a biopsy, or surgery. So they started her on Chemo.
They put in a port on tuesday 3/14/2006 and gave her her first dose of Carboplaten at 3:00 am.
We have been home for a week and a half now. And she is doing great.
Only one day had a hard time, because she found out they will be needing to get blood every week. That is not what she wanted to hear! She hates needles!
Havent written in here in a few weeks. Her blood counts are good for the last two weeks. Kalecia has been happy to be able to go back to church and to the youth activities. We take her back for her 2nd dose of chemo next wednesday. We are all hoping she will handle it as well as she did the first dose. They gave her the stuff to keep her from getting sick, and hour before they gave her the treatment. Because she was just a few hours out of surgery. So this next week will be a first for us, in not having done this part before. And we will know what to expect after.
Kalecia has been sleeping alot. Not sure if that is part of the chemo, the tumor. Or a way emotional response.
We talked to the eye dr yesterday, (i have to get glasses :P) He is the one that first found the problem and sent us to a specialist. He explained to me that the tumor is coming up from under the eye. Pushing up on the nerve. For some reason i had an image of it right behind the eye, or coming from the top. And just couldnt imagine why they couldnt do the surgery! But after he showed us his eye diagrams, and explained the area, i UNDERSTAND! It is deep in there, and would be effecting alot of areas to get to it.
The last few weeks we have had trouble with her port. They are going to put a stronger anti-clotting agent into it. To see if that fixes the problem. They did get blood, but it was really hard to get it out, and to put the saline/hepburn back in. We will see what they say when we go for the chemo. Kalecia has been really good about it. The first time she was nervous, but i think that after that, she realized it wasnt as bad as them having to stick her 5 times looking for a vein that would work. Will be sure to write more often, keep this up to date more.
Written Apr 18, 2006 11:32am
Kalecia had her 2nd dose of chemo on wednesday, april 12 th. She did great. And we got to meet the social worker the hospital has assigned to us. She is really great! She had tried to find us the month before, but with the back up in the surgery area, kalecia didnt get in to her surgery till 7 pm. The book and information she had for us, i needed last month so bad! But that is ok we have it now. And i feel better about our decisions.
Kalecia handled the chemo treatment well, her grandmother had taken us up for it. And we stayed around Salt lake. So we would know if she would get sick or not. After her treatment she got a treat and got to meet a very special person. Pres. Hinkley, the president of our church. And we got a picture of her with him. Her grandmother had asked a friend of hers if it was possible, but we really didnt have the faith it would work. We were all so shocked when it did!
She did good till the next day when almost home. she got sick in the car. And while cleaning up mom and grandma joined in! :)
The last few days she has been fine. She is wanting to go spend some time on the farm. They deaccessed her port today. We will have the results of her blood counts this afternoon.
Kalecia is excited because yesterday she got the news that next month the orthodontist will take impressions, along with her last adjustment. And then in June her braces will come off, and they will fit her with a retainer with a false tooth to fill in that gap! She was almost dancing to the car, and didnt fuse (to much) about having to wear her mask) to go into the grocery store afterwards.
Her next appointment will be may 10th. And they will do a MRI, i cant believe it has been 3 months already!
It seems like time has stopped, yet i turned around and it has flown by!
More later :)
Today we went up for her 3rd chemo treatment, and her mri. The first since the beginning. It is so hard for me to believe it is 3 months already!
Kalecia has an awesome attitude, other then being sick a little, and tired alot. She continues to act and behave like her normal self.
Today we took the two boys with us up, while the other two girls were in school. I wanted seth to see why he was being asked to babysit. He will be 15 next week. I was kind of hoping with the waiting and everything, they would get bored. Then next month he will say "i dont want to go" :P
Of course Primary Children's spoiled him and Josh. They loved it. After the MRI, we went into a room to wait. And Kalecia had her nurse hooking her up on an iv for fluids. Mean while seth and josh had their own nurse, making sure they were happy, and had things they were intersted in doing. They brought in a tv and a playstation and a big thing of games. And showed them a closet full of snacks, said "take what you want" So now of course they want to go back next month.
The dr looked kalecia over good. Then went and looked at the mri scans.
She came back to tell us that it has changed and is bigger. She thinks it is cystic tissue, not tumor tissue. But wants several other dr.s to look at the scans, and consult together. She is thinking that kalecia is a canidate for radiation. She said that cells of the tumor die and become like liquid, but they usually just take up the space they were in, not grow. But she wanted to get the mesurements looked at for sure. She never did give me exact details. We will hopefully hear in a day or so. Because they might change her treatment, they didnt give her her chemo treatment. We sat there going so do we go home or what? I waited till 4 pm, and hadnt heard anything, so i decided to bring the kids home.
Kalecia is excited, because tomorrow is her appointment to get her impressions done for her retainer. Next month is the big day! Her braces will be removed, she cant wait! I thought about moving the appointment, but Kalecia, is anxious to get this done, i dont blame her.
The big debate on the way home was who would be eliminated tonight on American Idol. Of course i was right who would be in the bottom 2 *big grin* But we are all shocked that it was Chris!!! all i can say is GO TAYLOR, seth says, Kat will get it, and Kalecia just says that Elliot guys bugs me. So you can see we are big American Idol fans!
Running out of things to share for today, will sign off
Had the wrong date in my mind for her orthodontist appointment, i must be going nuts here. She has to wait another week for that.
Kalecia recieved her hat and hug wig, it looks really cool! she loves it. She told me today she has been losing quite a bit of hair each time she brushes her hair. She still has alot tho! It does seem a bit thiner, but not a big difference yet. Hopefully wont lose it all, but now she has a wig that will help.
Written May 13, 2006 1:36pm
Going to start this entry off with a funny story. We live in a house that is rented. When we moved into this house we couldnt bring our cats or dogs with us, we had to leave the cats on our property, and the dogs went to a friend's farm.
There is a stray cat that was here when we moved in, running around. I asked the owner about her, and was told it had been abandoned a while back by some neighbors. SOMEONE kept feeding her, but NOONE would admit to it. But i know it was Kalecia.
Three weeks ago my husband found her in the family room with 3 kittens. One died the next day. We don't want them to become wild, so we broke the rules and put her in a box in the corner of the living room. She messed a few times so we moved her out to the porch. She left them there for 3 to 4 days before taking them somewhere else.
That next night our ducks out in the yard, in a little pen the kids made, were killed. There were not feathers all over, so we are pretty sure it wasnt a dog, maybe a mink.
The next night i was playing a game, and i heard this sound on the porch like a kitten mewing, loudly! Looked out, and in the flower pot (with no flower just dirt) is a little kitten crying, eye still not open. Momma not to be seen. Kalecia and i waited a little bit, and sure enough here comes momma cat with the 2nd kitten, and puts it in the flower pot. Then proceeds to get in and try to get comfortable to nurse, i wish our camera had had batteries!
We moved her into a basket under a chair on the porch, she seemed happy. Looked at me like "thank you" now i wonder if it was "just wait" lol!
It has been so nice, we have been leaving our doors open. So the next day the kids tell me "mom the cat moved her kittens" I thought great, we will have to find them again. Last thing we want is them to be wild. They told me "Under your bed!"
Sure enough there she was under my bed with those two kittens. We left them there for a week till their eyes were open. And moved her back out onto the porch, because we really are not to be having her in the house.
Today i have the house to myself for a while, Steve and the boys are at father son's campout, the girls went to the park. I have left the door open for the air.
The momma cat and i keep having discussions of where she wants her kittens, and where i think they should be.
It makes me think of how we want to move ourselves and be places. And where we want to put our children. And the lord moves us back, saying no not there.
please read entry before this one first, it was to long and had to do in two sections. (part 2)
Ok now for the serious stuff. This next week, at least the first few days is going to be packed.
I got Kalecia's ortho appointment moved to monday. She is so looking foreward to this, i couldnt take it away from her, and tell her she had to wait. Also we dont know what will be going on, or when we would be able to reschedule. So monday the impressions happenYEAH!!! Will juggle next month to make sure she can get the braces off. She is so excited because her retainer will have a false tooth, and take up that space that hasnt had a tooth for years.
Dr called, i had a hard time understanding alot of what she said with her accent. But the gist of it is, we need to meet and have a consultation. Tuesday at 9 we meet with the Radiologist, then at 2:20 we need to have her in provo, for her eye exam for her good eye. The dr is concerned that her good eye might be effected by this new growth.
I asked her how much it was grown, what the size was. She didnt give me dimensions. She said the growth wasnt a great amount of growth, but due to the fact the tumor is so large already, that any mm of change is not good and dangerous. She said that it doesnt look like the chemo is working so we do need to take anouther course. Either a different chemo, or radiation.
I am considering checking around for a 2nd opinion, just seems so hard to even go thru it all. And i dont want them to think we dont have faith in them. I know they are great doctors. So teetering not knowing what is right to do. And not really getting any when praying about it.
Hopefully will have more answers on tuesday or wednesday, and know how things will proceed thru the next few months.
Kalecia is doing great, she is so awesome. So positive, i sit there and think she has to be scared and worried. We ask her, she says "no what will happen, will happen"
I have to take a step back and try to not inject my worries onto her.
I have to take a step back and try to not inject my worries onto her. I know i am worrying enough for all of us! EVEN MY MOTHER INCLUDED (yes you mom!) one of the greatest worriers i know! LOL!
So today taking a deep breath and trying to relax and continue my gentle argument with the momma cat that knows her kittens are safer in the house. And know that my baby will be safe in who ever's hands the lord puts her. Even if i cant feel i am getting an answer, i know it must be there.
HI, another report in the works. Sorry ahead of time if i ramble.
We had decided to go ahead and see about a second opinion. Another member of the yahoo group i belong to, offered to help me. And she contacted a Dr. from St. Jude. I was shocked when he answered my email with in like 5 to 10 min, asking for my phone number. Dr. Merchant called and got ahold of me monday night at my sister's house, and talked with me for a long time. He didnt pull any punches, and let me know what we were basically facing, and could face. What did make me feel good is he knew Dr. Watson, the dr. assigned Kalecia's case. We were to be meeting Dr. Watson the next day for the first time. He gave him high reccomendations.
So the next day when we went in for the consultation i felt alot better. He answered all our questions. The bottom line is, we have to kill the tumor. He did answer my question about them assuming that the tumor is a low grade slow growing astracytoma, is more then likely wrong. The fact that it grew the way it did in 2 and half months is not slow. BUT and a big but, is that the only reason to do surgery is if they can remove the whole tumor, and that isnt possible. Why put her thru surgery, when it won't change the treatment plan. I would like to know what kind of monster we are facing, but i cant put her thru more pain on top of what she will already have to go thru.
He said if the tumor isn't killed he wouldnt give her 2 years before she goes blind in her right eye. Along with so many other issues of other areas of the brain being pushed on by the tumor.
He was very nice and assured Kalecia that they are a needle free zone. She was happy to hear that. He showed her around the place, and the mask they will use. Told her she can have it painted any way she likes. She said no she didnt want to, but who knows down the line. LOL
We had great news from the opthamologist, no damage to her right eye is showing right now! YEAH!!!!
Next week she gets her braces off, another YEAH!!!!!
Then thursday she will have another MRI, without the contrast because her braces will be off. It sounds like they are wanting to plan the next week after that to start the radiation.
That will be tough, it will be monday -friday, 5 to 6 weeks long. We will all just have to take it one day at a time, and be greatful for that time.
Kalecia is in good spirits, and feeling good.
Just a short note to let you know we did the catscan and mri, and markings for her planning for radiation, yesterday.
She is all set up now to start june 5th. She will be going mon-fri for 5 to 6 weeks. We will be staying in Salt lake, at the ronald mcdonald house.
We took alora, and she got to meet alot of new people and see Primary Children's hospital.
Later that evening Kalecia's aunt joy, and grandma and i went to meet a lady, who is going to help us work on My grandma's music. She is so awesome! a great muscian, we cant wait to see what she does with the music.
Kalecia gets her retainer next wednesday. Other then that, this next week will be relaxing ( i hope) and just getting the house and laundry in order (as much as i can that is)
Haven't updated in a while, last week was her first week with radiation. It went well. I was amazed at how well she seemed after it. I didnt know what to expect that first day. She came out smiling, said all done, lets go.
The next several days were the same way. Friday tho, she had fatigue and seemed to be wobbly when walking.
The dr looked her over after her treatment. and said he didnt think it was anything to worry about. Just the side effects of the tumor being aggrivated by the radiation.
She started seeing weird lights in her blind eye when her eyes are closed. He said that could be the tumor pulsing from the aggrivation and putting pressure on the optic nerve. sending impulses into the brain. I find it interesting, that it is her blind eye, getting the lights, not her good eye. He said with her seeing it when her eye is shut. means it is behind the lense. But thought it was very interesting also.
Going to start for another round of radiation this week. will up date more later. when i have time.
Havent updated this for a long time, because we have been up in salt lake. And i havent had access to my computer. Maybe i will teach my husband how to update, and have him do them.
Or not.... LOL
We have 5 sessions left then she will be all done with radiation. Will just be the waiting game for 4 weeks till her next MRI.
Kalecia is doing good. When she is tired she will get wobbly walking, which makes me nervous. But she really has been handling it well. She says she loves radiation because you just lay there! Hates Chemo!
Hopefully they will be removing her port this week. She is so excited about that. She has alot of anxiety about it, because it is painful for them to access it. They say it shouldnt be, but for some reason, each time they access her, it hurts more then the last time.
Last week she had a nightmare about it, and woke up with a panic attack. I talked to her radiologist, who told her dr it needed to be removed. Since it isnt being used but to be flushed once a month. She was so relieved to hear that, because she would have to be accessed this week.
I believe that the pain is real with her port when they access, but i dont understand why. But i am also thinking that she has been dealing everything so well, and has such a good attitude. That alot of her anxiety about the port is more then just the port. But the problems with the port, gives her something to focus it on. Which is fine, at least it is an outlet for her.
Will be all done next tuesday. Tomorrow is the 4th of july holiday, Kalecia is looking forward to it. We have our friends from oregon coming to spend the day with us.
Hope you all have a good and safe holiday. will update next week, when all done.
Written Jul 19, 2006 12:51pm
I was reminded nicely today, i hadnt updated yet. Yes i know i havent, and kind of been putting it off.
Kalecia is doing good. She needs to sleep alot, but that is normal, the dr said.
He gave her permission to sleep any time she wanted. Wouldnt that be nice to be given permission to do that!!!
We ran out of gas on the way home. Because of road construction at the place i usually get gas. MY BAD!! Tow truck came and wanted to charge me $167, for 5 gallons of gas!!! He kindly lowered it $30.00 and said i could make $5.00 payments. AFTER i went off on him about my daughter just finishing radiation. And that she needed aircondtioning fast! Come to find out an officer was on his way, and would of helped us. I didnt know i had the right to refuse his service. LIVE AND LEARN!
Kalecia was very offended. He had been very rude to me, till i informed him of her condition. She said "mom he should not of been rude to you, then changed his tune, when he found out i was sick" She is so mature for 13!
I was planning on telling steve "one day.. sometime... soon... " I really meant to...
So sunday at church, Brother Dopp, who happens to be married to my step-dad's cousin. Came up and said i heard you had some problems this last week.... Well someday happened! (HONESTLY i even was going to tell him the day before, but didnt find the right time) Steve is like HUH? Brother Dopp said "oops" and walked off with a grin, leaving me to explain i was planning on telling steve, just didnt find the right time!
Kalecia is glad to be home. But we are both spoiled now. Been living in an airconditioned building, and come back home to none! It has been some hot days!
We will know sept. 5th if the radiation worked. That is her next mri appointment.
We are all looking foreward to august. That is when she will have her make-a-wish trip. She is so excited she can hardly stand it. It will be fun.
Will update more when i have more info.
It has been a long summer, and now summer is over. We got good news this last week with Kalecia's MRI. They said in all but one dimension the tumor has shrunk a little bit. And the inside is looking more cyst like then tumor tissue. Which means the cells on the inside are dying and turning to liquid. They want to see her in 2 months for another MRI.
In August she got to go swim with dolphins for her Make-a-Wish. That was a trip of a lifetime for everyone!! We all had alot of fun. And loved staying at Give kids the world. They are so awesome, and great with the kids. Our kids thought it was awesome, because Give-Kids the world has a icecream shope that is opened at 7:30 am till 9:30 pm.
The kids got a kick out of the fact that the photographer made a deal that their dad was taller then shrek.
We got to watch the dolphins and the killer whales from the underwater viewing. That was so awesome!!!
We put kalecia's chair up next to the window, so she wouldnt have to stand up, she was so worn out. She and i put our hands on the window, and this HUGE Killer whale came over and was rubbing herself up and down the window right in front of where kalecia was sitting. That is an experience that was awesome for me! It was cool for Kalecia to, but she said she thought they would be bigger.... go figure!!!
Kalecia is doing good, her spirits are uplifted with the MRI report. Also with the fact her best friend is moving to town. Having her friend DJ here has really helped her emotionally i think.
We are all getting back into the swing of life. School has started for two of my kids. I have started small stuff for the other three kids who are homeschooled. With plans that now the MRI is behind us, and life is almost back on an even keel (as even as it can be), we will be hitting it this week!
Has been a while since i have written here. Kalecia's next appointment is nov. 6th, 6 days after she turns 14. She has been having headaches. Today said when she stands up, her head pounds. We have alot of stress and family stuff going on around us. I am hoping that is why she has been having more headaches.
We are going to try to buy a house this week. We were in Dallas for my father in law's funeral... came home after a interesting week there. To be told the house we live in (rent) has been sold. We have been knowing it was coming, just not so fast or soon. So the STRESS is on!
Today is Joshua's Birthday (kalecia's little brother) He got a bike, and is so exited. We will never see him now! He wants to go visit our friend's all the time! Thank goodness we live in a small town that we don't have to worry about traffic. We go walking down the middle of the side roads all the time.! LOL
So the next few weeks will be really busy, getting a place, moving, then kalecia's birthday, and MRI hitting...No rest!
Written Oct 24, 2006 11:07pm
Kalecia was having bad headaches, I called them last thursday, saying "when do i worry" The moved her date up to monday this is the results.
The tumor grew. The nerosurgeon said "well we threw the book at it, now time for surgery"
He did not initially want to operate. Because of the dangers of the area the tumor is in and around. But chemo didnt work, And now it isn't responding to the radiation she had during the summer.
The operation will be Monday 10/30 sometime. They expect one day in ICU, then 3 to 5 days in the hospital after that. So she will be spending halloween and her 14th birthday in the hospital (11/1).
Here is the numbers that we were given today. They pretty much speak for themselves. Thank you everyone for your support, and concern, and prayers.
Feb/march 2006-3.1 x 2.5 x 2.5 cm
May 2006 (after 2 doses of chemo) 3.4cm,3 cm (only numbers they gave me for that one)
after 6 weeks of radiation, and 2 months of nothing
9/2006 2.8 x 3.1 x 2.7 cm
Today's numbers are 3.5 x 3.2 x 3 cm
Written Oct 27, 2006 11:24pm
Surgery will be monday at 11:15 am, they think it will be 4 hours. We will see.
I have a friend that did this video for me, on Kalecia's Make-a-wish trip. I hope you enjoy it as much as i do.
Thanks Vannessa! http://www.youtube.com/watch?v=xnFlrCpDf5M
Letting everyone that is checking here know. She came thru the surgery good. The dr. said he got a little more then he thought he would be able to get. Maybe 50 to 60%. She was in pain some last night, but they were doing their best to keep her comfortable.
They will be doing another MRI today at 1:00. We haven't seen her yet, but will be on the way soon.
Last night i asked her if she wanted her dad or i to stay with her. And she told us no, go and get some sleep. She was aware of us, and everyone around her. Enough to say "i don't want a guy nurse dressing me!" LOL which i don't blame her one bit!
Will update more when possible
Written Nov 10, 2006 3:59pm
A week and a half after surgery, and Kalecia is doing great! She looks good, and acts like she did before all this happened.
The dr told us when they released her from the hospital, they got 90%! He got alot more in the surgery then he first thought he had.
Waiting to hear back on the recommendations of what to do next, wait or follow up with a run of chemo or radiation.
Kalecia is doing good. She has had no obvious side effects from the sugery. We are so blessed!
Her next check up is march 15th. But thinking of calling and seeing if they might see her sooner. She has been getting pale lately.
We are moving into a house we have rented on thursday the first of march.
Kalecia is in the hospital till they can find out why she is so dizzy, and unsteady. She has the dr.s stumpped at this point. She says when she stands up or is walking, it feels like the house is going to turn sideways on her. Hopefully we will find out what is causing it soon.
Written Jul 2, 2007 10:27pm
Had follow up today with oncologist. Still puzzled over her unbalance issues. They want to do a full spinal MRI to see if possibly the tumor has moved there. Or see if there is some issues going on with the spinal column. Praying that it isn't so. Home for the week, her dad and siblings sure glad to see us after being gone for a full week. Will celebrate the 4th here, then plan for next week after wards. They gave us a wheel chair to help get her around easier. She walks holding onto walls and things in the house, but the wheel chair will come in handy in stores ect.
Kalecia is doing alot better. The MRi showed no tumor, thank goodness! So i took her to a cousin who is a chiropractor.. THank goodness for him! He helped her, she stood up and walked. She still once in a while gets off balance, but is better. She has been going to physical therapy, we are hoping tht will help to keep it improving. She is excited about going to highschool this year.
A friend of mine, let me know i am slacking in keeping up Kalecia's page. I have been, and am. I told him it is called the procrastination bug, so i decided i better fight that bug, and do an update.
Kalecia for everything she has been thru in the last year and a half, is doing good. Could be worse, so we are counting our blessings.
The good news THE TUMOR HAS NOT CHANGED!
YAHOOOO! in the last year, since the surger, there has been no change in the tumor that is left. Next appointment will be in Jan, 2008.
Can you believe amost 2008 already!!
Kalecia has been fighting headaches, we are working on that now. They have put her on topamax (sp?) I think it is starting to work, at least she isn't having such bad headaches, she is on the couch all day, now. Which is what was happening before. They are not sure what is causing the headaches, But we are sure it isn't the tumor. I suspect scar tissue? or side effects from the treatments/surgery she went thru last year.
She has a problem sleeping, and we are working on ways to fix that. But i keep counting my blessings. She is with us, and for everything she has gone thru, in good health. I have heard of other cancer patients that are on lots of medications, and some of them for life. This is the first medication she has been on, that is a regular every day med.
Written Nov 16, 2007 6:54am
Kalecia is in High School part time, when she can go. She does well in her studies. Due to complications she cannot go full time.
She loves her Pack goat we got last weekend, Free from a Goat Packer in Southern Utah, and when we can get a saddle and packs and berry catcher, will be able to go on her walks with her around town and carry her things for her.
kalecia has started 10th grade. She is having more good days a week now, then bad. Which is a big improvement. We have gotten her headaches undercontrol. As long as she keeps taking her medicine, we do really good. But being a teenager.. LOL
We are now living on our property, and kalecia is enjoying having her dog, Wookie with us. along with being close to the horses, and other animals we have. Next week, monday the 8th we take Kalecia up for her 6 month MRI. We will see how things are progressing.
Kalecia had a good MRI, no tumor growth. We are so excited to hear that. Talked with her radiologist, who suggest she try excederin in the morning, or something with caffeine, to help her with her headaches in the mornings. Having an idea, and knowning what could causing her not able to get up very easily in the mornings, helps, she said. He said it could be the blood vessels in her head go into spasms when she wakes up. We will try what he suggests. I think knowing what is happening, and that it isnt more serious, takes the concern away, and she can deal with it better. She is low in estrogen, but the good news is, no sign of polycystic ovarian, like they suspected in june. We will find out more in dec about what is going on now in that area.
We will get her back into the swing of life this week, going back to school.
We got to go to a CREW party friday, I took kalecia and her two sisters up to salt lake for it. They had alot of fun.
CREW is an organization at primary childrens who host parties and get togethers, for children with cancer, and their families. This was the first time we made it to one. I think we will try to make it more often.
Written Mar 12, 2009 2:12am
It has been a long time since i have updated kalecia's journal. She is in 10th grade. Just had a follow up MRI, They said no tumor growth, and they want to see her in another 6 months. Still struggling with headaches, and dizzyness. But doing well other then that.
Kalecia is now 16, and in 11th grade prespectively. Last year she missed alot of school so as alot to catch up on. She has her next mri to be in sept or oct. We are hoping for a good report. Then we move into that awesome once a year MRI..... Which is good news. She is starting to enjoy spending time with friends and getting out more. Which i am very pleased to see, and hope to see more of. School just started this last week, and we have her going full time to start, and hope she will be able to do full time. Figure we will push her, till we know if she can handle it or not. Good things are going to happen this year, we can feel it!! I believe she is on the tail end of this crisis. Thank you to everyone for your prayers and well wishes.
Kalecia is doing good tumor wise. Still no growth since the surgery. She always has a smile for everyone. She is about to finish her 11th grade in high school. She got to go to her Prom and really enjoyed it. She didnt know if she wanted to, because she has some health issues that makes it hard for her to go out where there are alot of people. But she went and now is really happy she did. she looked like a Princess!!!
