The latest on Kayla

January 9, 2007

Looking beyond Kayla's memorial service in Reno, a non-profit organization, The Kayla Nebeker Karhohs Foundation (KNKF), is being organized to continue carrying out Kayla's goals and provide a means for everyone to honor Kayla's memory through volunteer work and charity. KNKF will promote public awareness and raise money for innovative research of brain cancer, specifically glioblastoma multiforme. It will do so by conducting fundraisers like the upcoming 2007 Gala for Kayla benefit concert in the fall. KNKF will also work on developing an online resource for GBM patients, their caretakers, and researchers that will stay updated with the latest treatments around the world, what doctors are on the cutting edge, and forums for visitors of the site to leave feedback on all of the above and support each other. If you are interested in helping please contact Kyle Karhohs by email or phone. Please continue checking this site periodically to learn more about KNKF as it develops

Kyle Karhohs
email: kyle.karhohs@ieee.org
ph: 775-846-6108

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December 27, 2006

There will be a memorial service for Kayla in Reno, Nevada:
Saturday January 13th at 11:30 A.M.

The location will be:
The Church of Jesus Christ of Latter Day Saints
1309 Buena Vista Way, Reno, NV 89503

Map

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December 14, 2006

After a courageous battle, Kayla passed away December 12, 2006. Funeral arrangements are as follows:

Monday, December 18, 2006
11:30 a.m. (time changed from 10:00 a.m.)
The Church of Jesus Christ of Latter-day Saints
470 S Wasatch Dr., Salt Lake City, UT 84112
Map

Graveside services will follow at:
10600 S 1055 W, South Jordan UT 84095
Map

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November 7, 2006

Kayla has made a very speedy recovery from her surgery. She was able to have her 41 staples removed just last week. Her pain has been kept to an all time low. In fact, since recovering from surgery she has not experienced any severe pain. Recently, Kayla was able to consult with her oncologist at Huntsman (Dr. Ali Choucair). He seemed to be really concerned with her blood counts after receiving chemotherapy treatments previously. The concern was that her counts would drop to dangerously low levels if he was to continue her on any of the clinical trials offered at Huntsman. Dr. Choucair suggested that Kayla consult with Dr. Howard Fine at the National Institute of Health (NIH). Kayla is always one step ahead of everyone and had already contacted NIH and scheduled an appointment. Kayla flew to Maryland today, and will have her consultation tomorrow (11/08/06). If accepted as a patient at National Cancer Institute (NCI), Kayla will travel between Utah and Maryland for treatment. I will post an update as soon as we find out the results of the consultation, as well as the clinical trial that Kayla will begin.

Just over a week ago a benefit concert was held on Kayla’s behalf. Kayla’s very dear friends in Reno, Nevada spent countless hours planning and preparing for the “Gala for Kala”. Their hard work paid off, and the concert was a success. Over 300 UNR students attended the concert, which raised over $5,000. Thank you so much for all of your efforts. Kayla is very appreciative and loves all of you dearly!

As for insurance, Utah Medicaid has already been approved which is great news. Kayla continues to need financial support as the $602 per month she receives from social security is hardly enough money to support daily living expenses. Your continued financial support is greatly appreciated.

And now for the BIG news…..

Kayla and Kyle are getting MARRIED this Saturday, November 11th at the Salt Lake Temple where they will be sealed to each other for time and all eternity. Kayla and Kyle are very excited, and their love for one another is truly a beautiful site. I look forward to attending their sealing and spending some time with them this week. Kayla has been very busy (as you may imagine), picking out a wedding dress, and getting all of the wedding details in order in such a short period of time.

Kayla’s new Utah address is:
1449 University Village
Salt Lake City, UT 84108

The following are links to Kayla’s wedding registry.

Kayla and Kyle's Amazon.com Wedding Registry

Kayla and Kyle's Amazon.com wish list

Kayla and Kyle's Target Wedding Registry

Scott

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October 17, 2006

Quite a bit has happened since the last update. After a routine visit to the oncologist, which included a blood draw, it was discovered that Kayla’s platelet counts were dropping. The doctor stopped her Temodar treatment and she was given a platelet infusion over the weekend. After having infusions, Kayla’s platelet levels continued to drop. Approximately a week later, Kayla’s white and red blood cells dropped as well. The following day Kayla had a headache she could not get rid of. Completely debilitated by her pain, Kayla was taken to the ER for fear of cranial bleeding. MRI’s revealed her tumor had continued to grow and was now posing a serious threat. The doctors determined the previously inoperable tumor had to be partially removed before any other treatments could continue. The bottom line was the doctors felt the standard treatment for GBM’s was not working and that she should be with her family. Her pain was so great she had to be on powerful pain medications throughout the day.

Before anything could be done, Kayla’s blood levels had to return to an acceptable level. They changed every medication she was on and performed a bone marrow biopsy to rule out leukemia. A toxic reaction to one of her medications was a likely cause. With little left that could be done in Reno, she was transferred to the Huntsman Cancer Institute located in Utah where the majority of her family resides. The doctors at Huntsman seemed to be quite a bit more proactive and hopeful about Kayla’s treatment. After a week of rest and infusions, and with the help of various other medications, her blood levels recovered to a level the surgeons felt was acceptable for surgery.

I must mention the latest Medicaid debacle. Great care was taken to ensure that Nevada Medicaid would pay for the treatment Kayla would be receiving in Utah. After several phone conversations with the social workers at Washoe Medical Center (now known as Renown), we felt very comfortable with her coverage being transferred. It was quite a shock to all of us when we learned that a referral was not made by Washoe, and now Nevada Medicaid is refusing to pay for her treatment in Utah. We are in the process of applying for Utah Medicaid.

Today Kayla underwent a de-bulking surgery which went very well. The surgeon, Dr. Fults, felt very good about the procedure. It is estimated that they were able to remove approximately 60% of the tumor. A more precise percentage will be determined with a post-op MRI. The de-bulking will relieve a lot of pressure the tumor was applying to her brain. The doctors said the tumor was so large it actually was shifting the brain to one side of her head. The last two weeks for Kayla and her loved one's have been a rollercoaster ride to say the very least.

Kayla will require a couple weeks of rest before her team of oncologist’s begin to treat Kayla with a clinical trial. The exact trial has not yet been determined, but we will update the website as soon as we know.

At one point in time a doctor told Kayla she only had weeks to live (he forgot to mention that was if nothing was done). We are all very thankful that Kayla did not give up as some of her the doctors had. It has been a very stressful month, but the Huntsman Cancer Institute has given Kayla and her whole family new hope.

Scott

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September is flying by! Radiation treatments and chemotherapy were started on August 31st. I've finished 19 radiation treatments as of today, September 27th, leaving me with 17 rounds of radiation left. The chemotherapy treatments are oral medications that are taken daily. I am glad to have an oral medication rather than a chemotherapy that is administered intravenously. The chemotherapy I am taking is called Temodar and has not given me many side effects at all so far. The dose of Temodar during radiation is only a small portion of what the chemotherapy will be after radiation. Everyone responds to the increased doses of Temodar differently, but I am optimistic my side effects will be minimal and manageable. Most of my hair has fallen out and the rest will be gone by the end of my treatment. I still don't have motor control of my left side. I still have trouble typing and I can't write and just last week I rolled my ankle when I took a misstep. However, I am learning to write with my right hand and am still able to do most things on my own. I've had a couple awful headaches. The steroid medications I am on have had to be increased to counter all the swelling in my brain. The steroids have been my greatest source of frustration. They are the pills with horns. Unfortunately, the swelling has been so great that I've been on the maximum dose of steroids. I'm really looking forward to stepping down the dosage.

Aside from the many side effects from my cancer and treatment, September has been a great month of love and support. So much has happened in the last two months it has been unbelievable. It has only been two months since I left the hospital, yet in that time more has changed than ever in my life. Through it all, there has been a tidal wave of support from my friends and family. So many people have rallied around my cause and organized and participated in fund raising events. There has been a work-out-a-thon at the UNR gym, a Party-Lite party, and a miracle minute at my old high school. All have been a great blessing and have gone really well. Truly, the most amazing event to happen to me during this whole time was a benefit dinner held in my honor at Washoe Medical Center (Renowned Health) where I once worked. Everyone I knew showed up! I want to thank everyone who came and especially all those that made that magical night happen. The dinner was an enormous success and never have I felt such an amount of love in one place.

Everyday it seems that I get a donation from someone across the nation who I don't even know. It seems like everywhere I turn, people just want to help. Even the smallest sign of care has strengthened my resolve beyond measure. Amazing still, even after a month of tremendous support there is a concert to be held on my behalf called "A Gala for Kayla" on October 26th on the UNR campus. I can't wait. I want to thank everyone who has been with me through this difficult time. I can't thank you all enough. The best thing I can do right now is enjoy the fall season and care for myself and those around me. I'm really looking forward to Halloween and Thanksgiving with my family and Kyle. Everyone have a good month and you'll hear more from me later.

Love,
Kayla

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A lot has happened since I wrote Kayla’s Story a month ago. There have been many highs and lows as Kayla has battled through a variety of road blocks. The pathology report was completed, and we received the news that the tumor is a Glioblastoma Multiforme (GBM), stage IV. GBM’s are very aggressive tumors, and it was recommended that Kayla find a way to UCSF for surgery in the immediate future. This proved to be difficult as Medicaid was not going to be approved very quickly since Kayla was working and had an income well into the month of July. Nevertheless, Kayla was referred to a very well known surgeon at UCSF (Dr. Mitch Berger), and we were determined to get her there. A huge blow came when Dr. Berger determined that Kayla’s tumor is not operable at this time. He suggested that radiation therapy along with chemo treatments of Temodar be started immediately. This could not happen without insurance, as the cost of Temodar alone is nearly $5,000 per month. Kayla applied for free medication through Commitment to Care, which is company located in San Diego, CA, and was approved. On Thursday, August 31, 2006, Kayla started her radiation and chemo treatments. There will be 36 rounds of radiation therapy, which will occur Monday thru Friday until complete. The radiation is 3D Conformal and will probably cause significant hair loss by the 3rd week of treatment. The MRI updates won’t occur until several months after treatments are over. This is due to the tumor being inoperable, and the images won’t show improvement until well after the rounds are completed. Kayla handled the first treatment fairly well, with only a little nausea. These treatments will continue weekly, and I will keep you posted with her progress. In the meantime, Kayla is battling with severe numbness in her left arm and leg which is caused by pressure from the tumor. We are hopeful that the treatments will decrease the size of the tumor, which will in turn make her left side more functional. On a good note, the supplemental security income (SSI) was approved on the 28th of August. This means that Medicaid will finally be approved, but not until the very hard working government employees at the local welfare office have utilized the 45 days they have to process the application. At least we know it will finally get done in the next month and a half. They are on a deadline now!

I, along with my family and Kayla, would like to thank all of you who have contributed your thoughts, prayers, and donations to Kayla. The University of Nevada, along with Washoe Medical center has set up fund raisers, which will be very helpful. Last night, (August 31, 2006), the workout fundraiser at UNR generated over $1,000. Thank you so much for all of your support.

Despite the long road ahead, and all of what is unknown, Kayla has a lot to look forward to. Kyle, who is Kayla’s long standing boyfriend, proposed to Kayla on August 24, 2006. They have plans to get married sometime this Fall/Winter. Kayla continues to have plans to attend graduate school beginning in January, 2007.

Scott, her brother.