A Miracle for Kalecia Huls
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My name is Karoline Huls, I am a mom of 5 children, two of them with different forms of cancer. This story is about my oldest daughter Kalecia.
In 2006, when Kalecia was 13, she went blind in her left eye. We took her up to Provo, and it started a nightmare we never would of dreamed of. They found a golf ball sized tumor that came off her optic nerve and wrapped around her corataid artery. She went thru Chemo treatments, then was moved to 6 weeks of radiation after it was realized that the tumor was still growing. The day before she turned 14, she went thru brain surgery to remove as much of the tumor (which had grown to the size of a soft ball) as the dr could get. They believed they got at least 75%. She recovered fairly well, then about 3 years later she started having seizure like episodes. The dr's couldn't figure out why she was having these episodes, the basic answer we got from them was "there are areas of the brain we don't understand" and "here take these pills." They had her on some really heavy antipsychotic drugs, where she couldn't even function, and was still was having seizure episodes. One night she had a two seizures back to back, and the 2nd one she wasn't pulling out of it. We had her taken to the hospital. Our local dr looked at her, and he told me, "I can't help you figure out the reason, but i will help you control them." He did help, and eventually over time they eased up. She made it over 3 years with no seizures occuring. We never did get any real answers or solutions. Then she was diagonosed with extreme vertigo, something that causes her to appear as if she is drunk, without ever actually tasting the alcohol. She has a great sense of humor about it, and we do our best to find ways to laugh. Yet again, she was told "No idea why you have vertigo, but it is something you will just have to live with."
She was a big help to me, (her mom) while we were taking care of Joshua her brother, who was going thru cancer treatments for Burkitts, in 2013. The day that he rang the chemo bell, Dec 1,2013, was her 1 year aniversary being seizure free, we celebrated both milestones that day with thankfulness.
That spring she went and lived with her grandparents in St. George and made it thru the adult high school, accomplishing some major milestones that we are so proud of her for accomplishing, getting her drivers license and achieving her high school diploma.
While there she went thru balance therapy, to learn how to live with vertigo.
This last year, there has been a steady decline in her health. Several family and friends have said they noticed it in Feburary, about April/May I started to wonder if she was starting to have seizures episodes again. In June she had a weird attack happen that is hard to explain, it had me getting her into our dr. that afternoon. He asked her if she was having seizures again, and she said "NO!" He ordered a MRI, that was scheduled a couple weeks later. That day, they called us in, and said there is something new, possibly a new tumor growing. We went home and she said she didn't want to put it on FB until some friends and family members had been told, but also so she could figure out a positive way to share her news. She did not want people to feel bad or look at her differently. The tumor does not define her. A family friend put this video together, to show Kalecia's attitude, and did it perfectly. She is such an example to me, i wish i could follow her example of "Don't worry be Happy"
We have been seeing a steady decline in Kalecia's quality of life in the last 9 months, she stays in her room in the dark more then she is out of it. Noise and light, and stimulation overwhelms her quickly. She gets to a point where she struggles to follow conversations, and walking becomes such a difficulty that makes her not even want to move. She has been having pressure headaches, and getting to where it isn't just good and bad days, but good and bad hours she deals with. We have got her into a Neurooncologist at Huntsman, and as of this last week, Oct 2016, he said there is no change in what ever showed up in her July MRI. He said to come back in 6 months. He speculates that she is having seizure episodes again, and possibly 2 or 3 late term side effects from her treatments 10 years ago. That is causing her symptoms, and the decline in her quality of life, again with no real answers just quess work. That seem to be the trend of what we have heard for years.
Her father Stephen Huls several years ago looked at Carrick centers, now named Cerebrum Health Center, feeling like they were something that she could benifit from. He contacted them this last week, and we will be sending them her records, it does not cost anything for them to look at the records to see if they can help her. When he told me he contacted them, i just shook my head, because i did not think there was a way we could do it, so why even look or try???? Her insurance would not cover it, and we have no way to do it ourselves.
He had me watch this video:
I sat there and cried, everything listed that they specialize in is Kalecia! She struggles with every single one of them. This list is things that she has been told there is no explanation why, but she has to just live with them. For example the extreme vertigo she struggles with daily. Thru in depth testing they can pinpoint the areas of her brain that is malfuctioning, and not only that but with therapys help her heal her brain. I watched many testimonials and with each one i felt a bit of hope, something that has been dying inside of me thru the years of watching her struggle thru her every day challenges.
We will have to go to Dallas Texas for the treatment. I was quoted that it could be $6,000-$7,000 a week, and she could be there 5-10 days. They do have hotels that give discounts to their patients, and have shuttles that would take us back and forth every day. The first day would be extensive testing, then after that every day would be several different therapys they would do with her.
Do I belive that it is the complete answer? Well the best answer I can give is, I believe it is a start on a road with answers that we have not been able to have with the treatments and drs we have available to us now. I am tired of hearing "we don't know why, but live with it." or "Here take this pill" A path that Kalecia is determined she will not go thru again. A quote from Kalecia is "I REFUSE to become a pill experiment again!" I so badly want to find away to help Kalecia find some normality in her not normal world.
In order to possibly achieve a miracle and find answers and help for Kalecia we desperately need financial help, If you can help even with any amount and share and pass this along, we are so thankful for any help.
In 2006, when Kalecia was 13, she went blind in her left eye. We took her up to Provo, and it started a nightmare we never would of dreamed of. They found a golf ball sized tumor that came off her optic nerve and wrapped around her corataid artery. She went thru Chemo treatments, then was moved to 6 weeks of radiation after it was realized that the tumor was still growing. The day before she turned 14, she went thru brain surgery to remove as much of the tumor (which had grown to the size of a soft ball) as the dr could get. They believed they got at least 75%. She recovered fairly well, then about 3 years later she started having seizure like episodes. The dr's couldn't figure out why she was having these episodes, the basic answer we got from them was "there are areas of the brain we don't understand" and "here take these pills." They had her on some really heavy antipsychotic drugs, where she couldn't even function, and was still was having seizure episodes. One night she had a two seizures back to back, and the 2nd one she wasn't pulling out of it. We had her taken to the hospital. Our local dr looked at her, and he told me, "I can't help you figure out the reason, but i will help you control them." He did help, and eventually over time they eased up. She made it over 3 years with no seizures occuring. We never did get any real answers or solutions. Then she was diagonosed with extreme vertigo, something that causes her to appear as if she is drunk, without ever actually tasting the alcohol. She has a great sense of humor about it, and we do our best to find ways to laugh. Yet again, she was told "No idea why you have vertigo, but it is something you will just have to live with."
She was a big help to me, (her mom) while we were taking care of Joshua her brother, who was going thru cancer treatments for Burkitts, in 2013. The day that he rang the chemo bell, Dec 1,2013, was her 1 year aniversary being seizure free, we celebrated both milestones that day with thankfulness.
That spring she went and lived with her grandparents in St. George and made it thru the adult high school, accomplishing some major milestones that we are so proud of her for accomplishing, getting her drivers license and achieving her high school diploma.
While there she went thru balance therapy, to learn how to live with vertigo.
This last year, there has been a steady decline in her health. Several family and friends have said they noticed it in Feburary, about April/May I started to wonder if she was starting to have seizures episodes again. In June she had a weird attack happen that is hard to explain, it had me getting her into our dr. that afternoon. He asked her if she was having seizures again, and she said "NO!" He ordered a MRI, that was scheduled a couple weeks later. That day, they called us in, and said there is something new, possibly a new tumor growing. We went home and she said she didn't want to put it on FB until some friends and family members had been told, but also so she could figure out a positive way to share her news. She did not want people to feel bad or look at her differently. The tumor does not define her. A family friend put this video together, to show Kalecia's attitude, and did it perfectly. She is such an example to me, i wish i could follow her example of "Don't worry be Happy"
We have been seeing a steady decline in Kalecia's quality of life in the last 9 months, she stays in her room in the dark more then she is out of it. Noise and light, and stimulation overwhelms her quickly. She gets to a point where she struggles to follow conversations, and walking becomes such a difficulty that makes her not even want to move. She has been having pressure headaches, and getting to where it isn't just good and bad days, but good and bad hours she deals with. We have got her into a Neurooncologist at Huntsman, and as of this last week, Oct 2016, he said there is no change in what ever showed up in her July MRI. He said to come back in 6 months. He speculates that she is having seizure episodes again, and possibly 2 or 3 late term side effects from her treatments 10 years ago. That is causing her symptoms, and the decline in her quality of life, again with no real answers just quess work. That seem to be the trend of what we have heard for years.
Her father Stephen Huls several years ago looked at Carrick centers, now named Cerebrum Health Center, feeling like they were something that she could benifit from. He contacted them this last week, and we will be sending them her records, it does not cost anything for them to look at the records to see if they can help her. When he told me he contacted them, i just shook my head, because i did not think there was a way we could do it, so why even look or try???? Her insurance would not cover it, and we have no way to do it ourselves.
He had me watch this video:
I sat there and cried, everything listed that they specialize in is Kalecia! She struggles with every single one of them. This list is things that she has been told there is no explanation why, but she has to just live with them. For example the extreme vertigo she struggles with daily. Thru in depth testing they can pinpoint the areas of her brain that is malfuctioning, and not only that but with therapys help her heal her brain. I watched many testimonials and with each one i felt a bit of hope, something that has been dying inside of me thru the years of watching her struggle thru her every day challenges.
We will have to go to Dallas Texas for the treatment. I was quoted that it could be $6,000-$7,000 a week, and she could be there 5-10 days. They do have hotels that give discounts to their patients, and have shuttles that would take us back and forth every day. The first day would be extensive testing, then after that every day would be several different therapys they would do with her.
Do I belive that it is the complete answer? Well the best answer I can give is, I believe it is a start on a road with answers that we have not been able to have with the treatments and drs we have available to us now. I am tired of hearing "we don't know why, but live with it." or "Here take this pill" A path that Kalecia is determined she will not go thru again. A quote from Kalecia is "I REFUSE to become a pill experiment again!" I so badly want to find away to help Kalecia find some normality in her not normal world.
In order to possibly achieve a miracle and find answers and help for Kalecia we desperately need financial help, If you can help even with any amount and share and pass this along, we are so thankful for any help.
Organizer
Karoline Huls
Organizer
Monroe, UT