Written Mar 25, 2006 1:06pm
Written Apr 18, 2006 11:32am
Written Jul 19, 2006 12:51pm
Written Oct 24, 2006 11:07pm
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!
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!
Written Mar 25, 2006 1:51pm
This CaringBridge site was created just recently. Please visit again soon for a journal update.
Written Apr 6, 2006 2:30pm
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.
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 :)
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 :)
Written May 10, 2006 10:02pm
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
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
Written May 11, 2006 7:24pm
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.
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.
Written May 13, 2006 2:26pm
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.
(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.
Written May 19, 2006 12:49pm
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.
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.
Written May 26, 2006 9:27pm
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)
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)
Written Jun 12, 2006 12:52am
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.
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.
Written Jul 3, 2006 9:59am
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.
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.
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.
Written Sep 10, 2006 5:04pm
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!
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!
Written Oct 18, 2006 9:53pm
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!
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
Written Nov 10, 2006 3:59pm
Written Jul 2, 2007 10:27pm
Written Nov 16, 2007 6:54am
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
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
Written Oct 31, 2006 9:42am
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
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.
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.
Written Feb 27, 2007 1:48am
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.
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.
Written Jun 26, 2007 5:15pm
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.
Written Jul 28, 2007 12:22pm
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.
Written Oct 22, 2007 5:19pm
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.
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.
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.
Written Sep 2, 2008 12:52pm
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.
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.
Written Sep 28, 2008 3:48pm
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.
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.
Written Aug 22, 2009 5:24pm
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.
Written May 16, 2010 7:06pm
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!!!
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