Monday, October 31, 2016

More Delays in saving funds, need A Miracle for Kalecia...

More delays in the saving of funds for publishing this book.

https://www.gofundme.com/a-miracle-for-kalecia-huls-2u2e885w



17
17

A Miracle for Kalecia Huls


$650 of $20k goal

Raised by 15 people in 18 days

Karoline Huls  Central Valley, UT
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.
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Monday, July 25, 2016

Reviews of Book One

Book reviews of Book One "Twin Lakes"

These are people who read a copy of book one that my son has.
They are associates of his. I do not know these people personally.


4-10-2016
Mr. Huls
I have read your wonderful book "Twin Lakes" and I thoroughly enjoyed it and I admire the fact that you have found the chance to start chasing a life long dream of yours.
So in short, I hope to one day to sit and share your stories and your dream as a truly talented writer. I cant wait for the rest of the books.
Thank you for taking the time to bring joy to this world of more downs then ups.
God Bless your family.
A truly wonderful rollercoaster ride cant wait for book two, love the Nemekans.

Justin Wheeler
Lovington,  New Mexico


05-16-2016

Dear Stephen Huls,
Thank you for sending your book its a very fascinating well made book. I've talked to your son about the theories you added to the book and they are all very interesting. I must say you lit a good fire underneath me and I hope you send parts of the second book. A little slow to start but once it gets started you can't put it down. Keep it up.

Sincerely
Mario Sandoval

Lovington, New Mexico

 

Whats been happening of late?

Well just a little insight into whats been happening.

Sent book one info off to 2 publishers waiting to hear back.
Still may need to find a way to go the Bookbaby self publishing route. Not sure.
Have to save up or presale enough books or ? to get the 3,000 needed to start the final process.

Book 2 is slowly coming along when I can write.
My wifes recovery is slow but she is getting better from her back surgery.

My eldest daughter Kalecia has once again been found with a new tumor in the same location of the last one, most likely cancerous they say. Still looking into Drs etc. at this time as its only been a few weeks since discovered. Drs thus far are not too positive talking about how to extend her quality of life stuff, for me that is the wrong answer, as I desire to find a way to fight these tumor / cancer and hope to help my daughter beat it again. She is now 23yrs.

Other issues, working hard in construction and the drama's there.
Planning on publishing as soon as I can figure out the finances or a publisher.

That's my little update for now.

Stephen Huls

Monday, January 18, 2016

Wife finally had back surgery and finally got her home.


January 14 at 7:55pm
Update: my wife finally had her back surgery this week. we are expecting my daughter to bring her home from up north by tomorrow night. All seems to have gone well.
I have also been able to fix some other drama's and things in our lives at least for the moment.
In time I hope to be able to re save the monies needed for publishing this book series. Only time will tell. and lots of hard work, extra evening construction jobs as they come, so hopefully but 2017 I can make enough and save enough to finally start this next step.... publishing book 1.


January 16 at 5:59am
New update, they did not allow my wife to leave hospital yesterday, due to oxygen issues... my daughter says they will release her today, I am preparing to leave to go to Provo Utah a few hours north to pick them up today. Sounds like we will be stopping every 20 min or so in order to let her walk for a few minutes on the way home, Drs orders, as she will have to sit in reclined van seat for this journey... as her new remolded back requires this for the journey home. So I hope in the next 2-4 months of recovery this whole things is worth it and she will finally be able to live with out the pains of the last 2+ yrs. Well time to go warm up the frozen van. We got snow storm yesterday 4 inches in valley roads were.. well interesting for driving yesterday, today just looks all frozen, but hey its warm this am, in the 20's !

January 18 evening.
Finally got my wife home. Saturday night,. now to start the long road to recovery, they fused 3 lower vertebrae and 6 screws are in place. so now dealing with the results for the next few months to a year. Remodeled the bathroom with metal bars by toilet and shower for her to use for safety this week end as well. still working hard during the days, and will start more evening work for a while to help with medical as well as repair vehicles... So life is about the same as always for us.
That's the update.

Book on hold as for publishing goes..
I will figure out how to add my paypal acct to this blog so in the future I can try a self fundraiser for the book. Just an Idea.  Or ?. I will figure out something someday to succeed at this.

Stephen

Saturday, December 26, 2015

Update on whats happening Dec 2015

Well good news was not a hernia, but a bunch of scar tissue with a faty growth that is causing the issues.. so no surgery for me.

 Wife will have new insurance next year so her back surgery is scheduled for Jan 12 2016, that will put her down for next 3+months.

 Working extra evenings/weekend construction jobs to help fund our copay for her surgery. No time to write with life, and all the drama happening at this time, no way yet to return to saving for the publication of Book ...1 at this time, we shall have to see what summer of 2016 brings.

Getting burned out on construction as maybe getting too old and broken to keep doing what I have done for over 22yrs now. Not that young anymore... such is reality. 

 Well thats the current update, hope all had a Merry Christ-mas... Live your dreams, work hard, study hard, and never give up....


 Some day the book series will be published, for I will never give up on this dream.

Saturday, December 5, 2015

book update

Not much happening yet on this project.
Life happens...working on finding new insurance for wife so she can have a back surgery, then I became injured at work, facing possible 2nd hyrnia surgery...in a few weeks..
interesting how life tosses trails at you.
But some day, some how, I will finish this project. never say never always keep striving to achieve your goals, eventually you win..as long as one never quits.


as time permits (which is limited) I am working on book 2 in the series. The story really is getting interesting now.

S. Huls

Sunday, October 25, 2015

When will Book 1 be published?

Just another update

I maybe looking at next summer before I am able to fund myself the needed 3 thousand for the basic needs of self publishing as stated in other postings.

With work, business and other issues any extra funds I can earn will need to go towards these issues 1st. Priorities are a fact of living.

Eventually I will be able to earn the funds on my own, will just take a good while it seems before book 1 is published.
Book 2 in in the works, but been on hold a while due to the above issues of lifes needs.

To have a dream is good, to work it as best we can is important and needed. However when life hands you trials and issues one if forced to deal with 1st then the dreams have always been put aside to deal with the realities of life.
This does not eliminate the goal nor the dreams however life does have a way of postponing them.


I look forward to being able to finally self-publish some day in the future. That is an eventuality that will happen for sure. Just not sure when.