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KibbyOnline.com |
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stories(AT)kibbyonline.com The helplist has been retired, but your messages of love and encouragement will continue to be important to the Clayton-Sanders family... |
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This website is for the many friends of the Kibby Clayton - Dave Sanders family, to help keep us informed as Kibby battles a brain tumor. It will answer some of our basic questions, and assist us in coordinating efforts to help Kibby & Dave wherever and whenever they may need it over the coming weeks and months of 2003. Use these links on a regular basis:
Please refer other friends of Dave, Kibby, Mark & Warren to WWW.KIBBYONLINE.COM for information! |
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FAQS |
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| What happened? On December 13, 2002 Kibby Clayton was taken to the St. Thomas emergency room because of problems with poor balance and slurred speech. The preliminary diagnosis was that she has a tumor on her brain stem. Because of it's location, the tumor cannot be be biopsied nor surgically removed. |
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| Are they sure that it is a brain tumor? They are as sure as they know how to be at the moment. Because the tumor is at a very critical and deeply embedded part of the brain, it is too dangerous to biopsy. Kibby has undergone a CT scan, MRI's, a PET scan and a spinal tap in order to try to verify that it is a tumor, not an infection or encephalitis. The results point toward a tumor, but the only way to be 100% sure would be to do a biopsy. |
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| Where did the tumor come from and how long has she had it? Many different things can cause a tumor (look below for some links to reference info on brain tumors). It has been estimated that Kibby's tumor has been present for two years. |
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| How large is it? At initial diagnosis it was measured at 5 cm (about two inches). |
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| When did she start feeling the effects? Considering that Kibby won an age group award at the Big South Fork 17.5 mile trail run in October, it is safe to say that there was little effect until very recently. However, she did have minor problems with balance the last few years which were treated as a seasonal inner ear problem. |
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| What are the effects 3 weeks after diagnosis? The effects have been quite immediate and striking. Kibby's vision, speech and balance have all been very seriously affected. Reading and TV are not really an option right now. The right side of her body has a more noticeable lack of control than the left. She can walk some with a walker and some help, but tires easily and is generally bedridden. She is interactive and can manage to quote Shakespeare if she needs to, but conversation requires a lot more concentration now and can be tiring. |
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| Is Kibby's tumor cancerous? Without a biopsy it is hard to tell. But there are some important indicators as to the nature of the tumor. Brain tumors can either start strictly in the brain (a "primary" tumor), or they can arise secondarily when cancer from another part of the body has migrated to the brain. If cancer has spread from another area, there is usually be tell-tale inflammation of lymph nodes. Upon initial diagnosis, Kibby's lymph nodes were not inflamed. That is positive news. The shape of the tumor is also important. A benign tumor tends to have well defined borders, while malignant tumors tend to branch out into surrounding tissues, making them harder to find and treat. Kibby's tumor appears to have well defined borders. That is also positive news. However, it is no guarantee that the tumor is not cancerous; and in fact even if it is not, it could become so later on. And a tumor at such a critical part of the brain as the brain stem is quite dangerous, whether or not it is malignant. |
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| What kind of treatment will she receive? Upon initial diagnosis Kibby started receiving strong doses of steroids to try to hold the tumor at bay while more tests were being done. An unfortunate side effect of these steroids that it can affect one's awareness somewhat, but she will need to continue taking them throughout treatment. She has started chemotherapy, which can last as long as a year. But the key weapon is radiation treatment, which starts on 01/02/03, happens 5 times a week, and lasts for 6 weeks. After the first 3 weeks of radiation treatment she will have another MRI to see how the tumor is responding. |
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| What kind of radiation treatment will she receive? When a tumor is in the brain it is important to irradiate as little healthy tissue as possible. Thankfully, there are now treatments which can isolate very specific locations in the body. Because of the location of Kibby's tumor however, there is no choice but to let radiation pass through some healthy tissue on its way to the tumor. Doctors have specifically mapped Kibby's brain and cranium to determine where to aim the radiation and from what angles. In her case they have mapped out several more paths than they would normally. This will allow them to minimize the amount of radiation that any one area of healthy tissue will be exposed to. |
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| What is Kibby's prognosis? There is no way to know until she has undergone sufficient treatment to see how the tumor is responding. As Kibby says, "They haven't told me I've only got so long to live, so don't go building a bench in the park for me yet!" |
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| How has this changed the Clayton-Sanders' daily life? This is now a 24/7 issue for them. Dave will be spending a lot of time away from work and has made plans for such with his boss and those who work for him. Warren has put off looking for a house and Mark is moving back home. You can still walk in the door, crack a joke, grab a beer, and chat about football - it's just that they have a lot more on their minds these days. |
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| What help will they need? Their needs will change as time goes on, and hopefully we can help with that. Sometimes it will be little things like taking out the garbage, shopping, preparing food, cleaning the house, mowing the lawn, cleaning the cat box. Those types of needs are easy to predict and will be easy to help with. Other needs may be harder to anticipate; time will tell what they may be. You can imagine that it would be good for Dave to occasionally be able to catch his breath and go do a workout out while someone watches things at the house. |
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| What is the best way to get in touch with Kibby and Dave? Dave and Kibby know we're thinking about them and really want to keep in touch with us about what is happening. They do take phone calls, but I know that some days the phone rings itself off the hook. It's gotta be difficult to recite the same information over and over. That's why I created this web site. Dave can share what is going on when he gets the chance. We all can use this site to read his entries and stay close to things without calling all the time. And we can use this site to coordinate any activities which might help them. |
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Where can I find more information on brain tumors? |
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What you find here is the web page that was started in January 2003 to help Kibby Clayton and her family tell the story of her progress in fighting an agressive brain stem tumor. Kibby lost the battle on May 5, 2003. However, to say that she "lost" is not quite accurate. As you will begin to see from the original content below, the number of lives that she touched was incalculable. So many people knew Kibby, knew each other because of Kibby, or found enthusiasm for some new endeavor through Kibby, that it is fair to say she truly cheated death...