More NF Heros

Saturday I was blessed with gorgeous weather for my long run. Next weekend will be my final long run before the half marathon on June 26th. It was about the 3rd or 4th time I tried out my NF endurance outfit (tank style running top with a blue running skort matching the words "NF Endurance" on my neon yellow jersey). The weather was HOT - 85 degrees with barely a cloud in the deep blue sky. Although it sounds like the most ideal of conditions, such bright days enhance my vision impairment making my visual perception more distorted and double vision more intense. As a result, I had to look mostly at the ground in front of me. With my difficulty seeing and the long grass on the side of the trail, I completely missed one of the mileage markers and ran a mile and a half further than I was supposed to (10.5 miles instead of 9). In addition, I am not at my best in hot weather. Although my attire kept me pretty comfortable and the occassional tree shaded areas gave some relief from the hot sun, halfway through the run my feet began to feel like they were on fire. They ached and were sore but I kept pushing through the 10.5 miles thinking of my how feet pale in comparison to the trials my NF heros have endured.

Less than 2 weeks now and I will run my 2nd half marathon to inspire, and raise awareness and research funding for NF. Here are a few more stories about my NF heros that I run for:



Leah Manth

Leah was officially diagnosed with NF2 in July 2007 after a 7 month odyssey. At 10 years old she has already endured 3 major surgeries and 3 minor. She had a lesion removed from her chest and scalp in January 2007 that were incorrectly determined to be neurofibromas. So her parents spent the next 7 months preparing her for a life living with NF1. It wasn't until a MRI scan showed a huge cervical tumor and the negative NF1 bloodwork that their local neurosurgeon said she may have the rarer form of NF known as NF2. The week the blood work came back confirming the NF2 diagonsis, the pathologists at Boston informed Leah's parents that the neurofibromas from January were instead schwannomas, confirming the that Leah had NF2.
Leah had the cervical tumor removed in Dec 2008. Normally, this type of tumor lies dormant for many years but Leah's started growing and compressing her spinal cord. At the same time, another typically slow growing brain tumor known as a meningioma had grown significantly and needed to be removed in order to prevent detrimental damage. Doctors operated on the cervical tumor in her neck first with the hope of going back in a few months to remove the meningioma brain tumor. As Leah's parents prepared her for another surgery on the meningioma tumor in June of 2009, they found out that her cervical spine had collapsed. A somewhat emergent surgery known as both posterior and anterior cervical fusion was performed in early August 2009. Because of this surgery, Leah had to wear a jr cervical collar for 6 months (August 2009 to January of this year). During the time she had to wear the collar, the brain tumor kept growing causing headaches. Unfortunately, due to its critical location near the motor cortex surgeons did not want to wait until she no longer had to wear the cervical collar to operate. Thus, Leah had her first brain surgery in November 2009. Because of the complicated nature of NF2 tumors often fused to important structures in the brain, surgeons were unable to remove the entire tumor meaning it is a high probability it will regrow requiring further surgery.
In addition to the spinal surgeries, brain surgery, and removal of the schwannomas, she also had a lip lesion removed in December of 2007. Her parents have decided to chase the cosmetic lesions that bother her. Athough she has others on her body her mom says that at the age of 10, Leah is just more concerned about being a kid.

Leah is also a fellow participant with JT, Oliva, and I at the National Institute of Health where researchers are trying to understand the growth mechanisms of NF2 tumors in order to determine a pathway to treat them with theraputics.



Jeff Bristow

My name is Jeffrey Keith Bristow and I live in the UK. I am 41 and single. Although I am in a wheelchair, I live on my own and I do everything for myself. I like it that way and its good to cook or go to to bed when I like. My parents were told when I was 4 years old that I had NF1. Over the years I have had many tumors removed and many problems to deal with. In my early 30s I started to have problems in walking due to a large tumor at the back of my knee. The doctors did a test and discovered the tumor to be a high grade sarcoma cancer. I had to have my leg amputated well above the knee. So I had problems with a prosthetic leg. 3 years after losing my leg I found out I had thyroid cancer in my throat. I have now been in remission for 3 years. All is fine but I still have to go for tests yearly for both my right leg and also my thyroid cancer. So far all is well.
Although Jeff lives with chronic pain like many other patients with NF1, he spends his time helping cancer patients and volunteering with the local hospice program.

My NF Heros

On the 26th I will be running the Seattle rock and roll half marathon for the Children's Tumor Foundation NF Endurance team. I am running for everyone affected by the disorder Neurofibromatosis.

See Rebecca's Rock'N Run

The pictures above are some of my "NF heros" who inspire me to keeping pushing when I am tired, my legs hurt, I can't see straight from double vision, my feet are blistering, and my glute and hamstring are aching due to tendonitis. Personally, I feel my trials pale in comparison to what they have been through already in their young lives. Their incredible attitudes of perseverence in spite of challenges, hardships, and tragedies motivate me to continue to fight for this cause even when I am physically as well as emotionally tapped. (Truthfully, fundraising can be as trying as the physical if not more at times.)

Karin's story (in the purple shirt with her dog Amber)

Hi! I Have NF1 and Pseudarthrisis of the tibia. My leg broke at 8 months old in a cast. It was placed in a cast to protect it. With this condition associated with NF once the leg breaks it never mends. Amputation was suggested many times to my parents but they rejected. I was put through many failed bone graphs and orthopedic operatons. Back and fourth from a long leg brace to a cast. I was in a long plaster cast for 3 years for each operation, then back to a long metal leg brace, pins, rods, fixaters, and operation after operation it never mended. My shoe size was 4 size differences and 3" shorter in leg length. Just 7 years ago I developed a major bone infection due to all the failed operations. I had no choice but to loose the leg in the long run. I still have tons of pain 24/7 and major phantom pains. I have no idea what life is like with no pain. I manage OK and get by OK. I'm a part time teacher's aide and enjoy working with kids. I have a womderful husband and a nice home. I feel lucky compared to some people with NF.

Note: Karen and her husband have chosen to not have children due to the 50% chance of passing on this genetic disorder to each offspring. Karin does not wish to put a child through the pain and constant operations she has been through. Many others with NF feel the same. With the tumor load many with NF2 have in the brain and spine, a pregnancy is very harsh on the body and is believed to encourage sudden rapid tumor growth.

JT's story (center in the blue t-shirt)

JT is a very wonderful 7 year old little boy and a budding endurance athlete running in children's races for his friends in the Children's Tumor Foundation. JT lost his grandmother to NF2 shortly after he was born when she was only in her early 40s. His mom Olivia (who is another hero of mine and motivates me to do these runs....I try to keep up with her! lol) is also an NF endurance athlete with NF2 and team captain down in LA. Olivia has endured SEVERAL spinal surgeries as well as radiosurgery for tumors on her optic nerves, cervical area of her spine, and in her brain. Although JT looks normal and has a fantastic smile just like his mom, he also has a tumor on his optic nerve and is blind in one eye. His saga with NF2 is only just starting. That is why what his mom and I are doing for our cause is so important so that we can provide hope and a chance for children affected by NF.

Devon's story (during group storytime in the hospital)

Devon is 8 years old currently but his journey with NF2 began 3 years ago. Since then, he has already had multiple brain surgeries and spent lots of time in the hospital but he always manages to have a winning smile on his face! He is another budding athlete who participates in children's marathons in Canada. Here is what his mom Kim wrote about him:

Devon is a spontaneous mutation (meaning it was not genetically passed on to him from parents or grandparents). He was diagnosed at age 5 because of the devastating effects of a large meningioma compressing his brain stem. At the time of diagnosis, he also had 4 other tumors and was blind in the (r) eye from one of them.
Devon has had 3 surgeries, 2 when he was five and one when he was six, all for the same tumor. He had a meningioma next to his brain stem involving the 5th-9th cranial nerves. When diagnosed, it was the size of a baseball. The residual tumour is now very small but it was a very aggressive one and they could not remove it all (it is "stuck" to a major artery in the brain). They decided it needed to be radiated or it would grow back and the opinion was that they could not operate anymore. So he had 6 weeks of daily radiation, 5 minutes per day.
He has also had a few smaller surgeries for post op complications. He developed a Meningocele after the 3rd surgery that required inserting an external ventricular drain into his spine and 3 weeks of bed rest.
In the fall the MRI showed enhancement (growth) on the 8th cranial nerve indicating the start of bilateral vestibular schwanomma's (the tumors which cause deafness, loss of balance, and facial paralysis). He is currently 8 yrs old and living life to the fullest! He is an inspiration to me!

Back To Work

Just a short post here as I need to head in for a makeup session with my trainer that I missed yesterday. Last week the GI doctor wanted to perform a test to investigate for gastric (internal) bleeding as the source of my anemia before I ran the half marathon and could possibly do damage if there was a problem. Distance running is quite a strain on the body and gastric bleeding problems are common with runners.

FORTUNATELY I recieved good news! While the search and pokes to find a vein for an IV was sort of a drama, the colonoscopy and endoscopy procedure was cake compared to the things I have gone through! I was a little unprepared that it is actually a full medical procedure in which one is prepped just like any other surgery - gown, in a medical cot, IV, etc.. But after the IV apprehension, I barely remember the hour and a half procedure even though I was under conscious sedation. I do not even recall them putting any kind of tube down my throat.

Everything looked great! No internal bleeding problems so I can commense with training and happily run the half marathon in full glory!

The Scare

So I last left you with the story of my increasing fatigue and difficulty functioning. 4 weeks ago I emailed my general internist on a friday about the issue and he ordered me to get a blood test that weekend. When Saturday rolled around, I did not think it was THAT urgent of a problem so I did not get the blood test until in the early evening because I had to drive to a different town.

Apparently, they can get results back fairly quickly. I imagine the friendly technician was also took extra care in the urgency of the results as I had explained I was having a significant fatigue problem and difficulty with my endurance training.....the tech is also an athlete and competing in his first triathalon. I also mentioned in our conversation that I was a blood cancer survivor and had brain tumors on top of that! Therefore, I am sure he was anxious to analyze my results and that my history raised some concern. I went home happy with the pleasant phlebotomy experience and relieved to get it taken care of, not expecting to hear anything back until the next weekday.

Around 10:30 or 11 pm, Harley gets a call on his cell phone. I wondered who could be calling him and he seemed rather serious. When he finished the call, he signed to me that it was the doctor who could not reach me. My results were not good and he urged us to go to the emergency room. It was an on call doctor from my general internists office who left several messages on my VCO phone. People VERY RARELY ever call me so I am not in the habit of checking for messages regularily. Hence, the late evening call.

I was severely anemic with a hemoglobin count of 7.5 which was only 0.1 higher than when I was diagnosed with cancer. I had periods of slight anemia following my first surgery in 2007 but nothing ever serious which raised the attention of doctors. The hemoglobin is the oxygen carrying capacity of your blood and mine was so low that it is no wonder I was struggling to breath after 15 minutes of running. The hematologist we saw later was surprised I even managed to run 3 miles and to keep up my activity level as long as I had.

So it was late at night, I was tired, and I just wanted to go to bed instead of sit in an emergency room for who knows how many hours. My last experience there was right after I came home from brain surgery where I was so ill that when they finally called me into the office, I started bauling because I could barely wait to get a bed and an iv to feel better. After my blood test, I had stopped to workout at the gym and had yet to shower. Having spent my energy reserves for the day, I so badly wanted to go to sleep instead of sit in the waiting room of an emergency room.

I pleaded to stay home and wait for morning to go the hospital. But the doctor informed Harley of the potential seriousness of the situation and the urgency that I come in to get further tests taken. This scared me. I have never been called in like that for anemia before. While I showered I became more amd more disturbed and frightened.

To make a long story short, after several hours at the emergency room and another IV, I was finally released after my tests came back clean. Phew! There were still additional results to come in but the important ones and chest xrays I passed. The ER doctor was reluctant to tell me what they tested for as she did not want me to worry unecessarily. She said it was a long list of like 40 things and my vitals were actually great, unlike the time I had severe anemia at my cancer diagnosis. After speaking with the hematologist, the ER doctor instructed me that there was no immediate danger and that I was to have an appointment with the hematologist at the Cancer Center monday to discuss an iron infusion treatment.

What a HUGE relief! - both physically and mentally!!! It was a little psychologically difficult at first to get my first 2 infusions because I had to get them at the same place that patients recieve chemotherapy. I HATE needles and getting an IV. Going through the drama of finding a vein, warming the veins, and pumping stuff into me reminded me of chemo which gave me an unsettled feeling. When having an IV after surgery, I was too drugged up and sick to care so it did not affect me the same. Now however, I was not drugged up or sick where I was desperate for them to pump medicine into me. My IV time was drastically shorter than each chemo treatment I had! Each infusion was a half hour or less instead of ALL day! Further, instead of making me feel like total crap afterward, each infusion made me get stronger and stronger where I craved more so I could have the energy to take on more activity.

My treatments were twice a week for 3 weeks. The second week my mother-in-law was here and accompanied me to each treatment. Visiting with her while we waited for an IV nurse and for my veins to warm up so they can find one, eased my anxiousness about being poked. I tolerated it quite well and found going back very favorable as each treatment allowed me to return to running/training and go further. I actually slightly missed that treatment ended after 3 weeks as each gave me a boost. At the end of 3 weeks my blood chemistry was re-evaluated which improved remarkably but still slightly anemic. At the end of last week I was getting tired again so on friday another blood test was taken and I was given half of a dose. This time my blood chemistry was nearly normal but the hematocrit at the low end so my body is probably "deconditioning".

So now why did this happen in the first place????

Well we really do not know. It is possible that I am experiencing gastric bleeding which is common with runners. Today I met with Gastroenterology and the doctor wants to investigate to make sure I do not have an ulcer or something causing intestinal bleeding. We are doing the test before the half marathon because if I am having gastric bleeding, it could become compounded by the strain of the upcoming half marathon.

Another possibility but extremely rare is that I could have an intestinal schwannoma which has been found in NF2.

So although I am doing great, in the back of my mind there is a litte tiny uneasiness as my grandfather had colon cancer in addition to blood cancer - not exactly favorable family medical history in relation to this test. I am hoping it is nothing too serious that would need any kind a procedure which could hinder my training and event. So send me good vibes! :D