In November of 2007, Brenda began to notice that she would have indigestion anytime she would eat. This was the only sign that she had at the time that something was wrong, something that would later be the biggest change in her life, which I will get to a little later. Before I discuss this, I think it is important that you know who she is, and where she came from.

Brenda was born in the mid-1950’s as the youngest child and only girl with 3 brothers. The brothers all loved to “pick on” their little sister, but were very protective of her. When she was just 5 years old, her father was diagnosed with a rare form of cancer (at the time), Multiple Myloma. Later that year, he lost his battle and passed away before her 6th birthday. Brenda’s mom took over farming to provide for the family while going to cosmetology school. In 1963, the family moved out of the country to the “big” city of Cordell with a population of about 2500. The brothers took care of Brenda after school, until their mom remarried. At this point, the family grew from a family of 5 to a family of 11 with all brothers! Now she had 8 brothers to help look after her. So with all of those brothers, “little” sister grew up being pretty tough and able to hold her own under almost any circumstance.

After high school, Brenda was off to college where she decided that was not for her. She decided to go to cosmetology school and learn to fix hair, just like her mom had done after her dad had passed away. After fixing hair in Oklahoma City and Cordell for a few years, she decided to follow two of her brothers and move to South Fork, Colorado. This was her chance to get away from beautiful Oklahoma! While living in South Fork, she met Russ, a hardworking, quiet sort of guy. Russ was handling maintenance on the heavy equipment used at the local mines. Russ passed “inspection” by the two brothers, and was given the OK to date Brenda even though he was from Nebraska. Russ was hard working, loved to hunt and fish, and had a motorcycle. What else could you ask for? So you guessed it, they got married in South Fork.

When worked slowed down at the mines, Russ and Brenda headed off to the bright lights of Las Vegas where Russ handled the maintenance on the heavy equipment for a local construction company. Russ and Brenda bought a house and soon had a beautiful baby girl named Kelli. Kelli was a quiet little girl. She did start to crawl a bit later than expected but she appeared to be doing well. Between one and two years of age, Brenda and Russ figured something was not right. Kelli never learned to walk or say any words. The doctors kept trying to find out what was wrong, but could not place their finger on it. When Kelli was about 2 ½ years old, Brenda and Russ finally heard the words, “Kelli has Rett Syndrome”. (See details of Rett Syndrome here.)

Rett has four disorder stages: the early onset stage, the rapid destructive stage, the pseudo-stationary stage and the late motor deterioration stage. Kelli seems to have gone from the rapid destructive stage to the late motor deterioration stage very rapidly. Kelli has all of the symptoms of Rett Syndrome (some children do not have all of the symptoms) except rather than cry, Kelli laughs. Again, Kelli has never walked, talked, or pretty much done anything like a healthy young lady would do. Brenda and Russ decided early on that they would not place Kelli in any type of care facility. They are very thankful for the many teachers, therapists, doctors, friends, and family that have helped Kelli. Kelli is now 19 years old and weighs about 90 pounds or so. Brenda and Russ still carry Kelli wherever they go. Either Brenda or Russ pick Kelli up to put her in her wheel chair, to load her in the car, to place her in the bath, or where ever she needs to be.

After reading about Rett, you will see that a family with one Rett girl has about a 1% chance of having another Rett Syndrome baby should they decide to have more children. Brenda and Russ decided to have another child. Lindsey was born almost 13 years ago. She is a healthy, beautiful, bright and talented young lady that is full of love for her family and big sister, Kelli. (Read more about the family here.)

In November of 2007, Brenda noticed that she was having indigestion anytime she would eat. Throughout December she continued to have issues with eating, but held off going to the doctor because of the holidays. In January 2008, she finally went to see a doctor, who prescribed some medicine and sent her home. When that didn’t work she was given even stronger medicine, which did not show any improvement. In February, Brenda went back to Cordell to help take care of her mother who was ill. While visiting her mom, she discussed her problems with her brother Scott who was also having stomach issues. They both decided that they needed to find out what was wrong and agreed to going to see the doctor again. Scott found that there may have been an issue with his liver, but a biopsy proved to be negative. Brenda goes in to get some tests done, and has a CAT scan performed. The scan showed some type of growth on her liver. After a biopsy was performed, the growth was found to be Spindle Cell Sarcoma, but the type of Spindle Cell was not identifiable. By May, doctors from the Mayo clinic and MD Anderson had taken a look at her results and still had no idea exactly what type of Sarcoma they were dealing with. All of the markers for the different known types of cancer were coming back negative, but everyone was sure that a 15cm X 7cm tumor on the liver was not a good thing. As usual, Brenda kept a great attitude and decided that she would give a name to her new addition, and called it “timmy the Tumor” with a special emphasis on the little “t”.

After exhausting her options in Las Vegas, Brenda learned of a doctor in Nebraska who had a good record with liver cancers, and decided to see him. At this time, Brenda’s brothers Scott and Randy both decided that they really ought to get checked up and both went to see their doctors. Scott’s liver problem seemed to be attributed to medication he was taking which made everyone feel better. When Randy went in to have his liver checked out, the doctors said that his liver was fine, BUT he did have a large tumor on his kidney. So now their were two members of the family with cancer. Brenda was on her way to Nebraska to meet with Dr. Botha, and Randy was in Texas with Dr. Shaw. Both doctors decided that the best treatment would be removal of the tumors and Brenda and Randy both went in for surgery over the next month and had the tumors removed. Randy had one of his kidneys removed, and Brenda had a large portion of her liver removed. Both kidded around comparing stories and trying to determine who was the winner for biggest tumor!

On June 17th 2008, Brenda flew home to Las Vegas from Nebraska after being given a clean bill of health. Everything seemed like it was going well, she was recovering from the surgery very well. In August, Brenda went for a check up where the CAT scan and MRI showed large lymph nodes in the abdomen, and again the doctors decided they needed to come out. So on September 12th, Brenda was back in Nebraska for surgery. Again, everything seemed great. On November 7th, Brenda sent the following text message:

I’m sitting in my truck crying tears of joy. It’s the first time in 228 days that all current tests state “no evidence of recurrent tumor or metastatic disease at this time”. Amazingly sweet words to read, I tell ya. : )

We were all extremely excited, and felt very blessed. Even today, this is an amazing thing.

Things did not stay so joyous for long. In late January of this year, Brenda had another MRI performed. Two tumors were found that had not been there in November. The doctors are not sure what the next step is, and everyone is concerned about Brenda’s health. We would like to make it possible for her to make a decision on treatment based on quality as opposed to finances. The insurance company will not cover treatment at some of the hospitals that have better success rates, and the expense to go there is very high. We want to take this out of the equation for Brenda and her family.

Taking care of Kelli would seem to be really tough for us folks that do not have a special needs child. We cannot imagine the pressure, stress and love that go into make this a happy, ongoing family. Even with all of these pressures, Brenda has lead a very healthy life, she is a non-drinker, non-smoker, who actually completed a half marathon 2 years ago at the age of 51! When Brenda found out last year that she had liver cancer, she told her doctors that they just had to help make her healthy again. She has a family that is so dependent on her and she does not have time to be unhealthy or die.

Brenda and Russ are certainly our heroes.

Love,

Randy and Bryan