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The Harthorn Clan’s Story

NEW HARTHORN UPDATES - DAVID & CHARLIE (age 9)

Welcome to our CaringBridge site. The Harthorn Clan has some new significant medical issues...and continues to face some old ones. David has been diagnosed with Stage 4a Salivary Gland Cancer (Mucoepidermoid Carcinoma) and Charlie (our 9 year old) has just been diagnosed with a degenerative cornea disease (Keratoconus) that causes blindness. We are reviving our CaringBridge site. Please feel free to pass the site along to anyone you think might be interested. Visit the journal tab for more details and send a message to David and Charlie in the guestbook tab. Thanks for all of your thoughts and prayers!!


Pre-2012 Info

David's MS Info

David was diagnosed with MS in 1999. MS is a disease of the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses. In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. Wherever this happens in the CNS, the function controlled by that area is affected.

Symptoms that David has experienced for weeks, months or permanently include;

BlindnessArm and leg numbnessDifficulty walking and balancing Vertigo (dizziness) Extreme fatigue Tremors Depression Irritability Short term memory issues Attention Organization Decision making Problem solving Personality changes

David's MS worsened in 2005 when he became immune to his self-administered injection medication (Rebif). He is currently on quarterly chemotherapy treatment (Novantrone) and will finish the two year course this fall. He will then start a newly introduced infusion (given through an IV) medication called Tysabri. Tysabri went on the market for a very short time and then was taken off of the market since some people died while using it. They think they figured out why and it is now back on the market....but it still makes me nervous. David's chemotherapy treatments have helped. He has recently started to work and is currently working a few hours per week at a local golf course.

Connor's CP Info

Connor was born with his CP but it wasn't diagnosed until he was about 1 1/2 years old. Connor was 7 weeks premature and was hospitalized for 10 days and on a respirator at birth. He has had several surgeries and intensive physical and occupational therapy. His surgeries were at the ages 4 (6 weeks in the hospital for a spinal cord nerve surgery), age of 5 (orthopedic surgery with 6 incisions on legs/feet to correct muscle and bone issues including cutting and turning femur bones to help align his legs) & age of 6 (another orthopedic surgery to cut and turn tibia bones to help align his legs). Each of the surgeries required a wheelchair and lots of therapy. At age 7, he broke his back (a vertebrae in his spinal cord) and was in a wheelchair for the 4th winter in a row. Since that time, he's been a pretty average, active kid with lots of trips to the doctor and some accommodations at school. We've just found out that he'll need a knee surgery in the next couple of years...one more winter in a wheelchair. Connor says he can't do it in the summer since it's no fun to be in casts in the summer if you can help it!!

Other Family Stuff

David's disease has greatly affected our family. Along with all of his terrible symptoms, David has gone from being a dad who goes to the park, plays in the yard, coaches t-ball and has great fun with the kids to a dad who often doesn't make it through dinner with the family. He frequently goes to bed exhausted by 6pm and is often unable to attend kid's activities due to the fatigue related to MS. However, in spite of his disease, we still work hard to do fun family activities together and to allow our kids to develop their talents and abilities through extra-curricular activities.

We've become involved with the MS Society and have gone on a number of MS Society 'getaways'. We also attended a Camp Courage Family Camp last summer. It's really awesome that there are great organizations to support families with disabilities. It's also nice to connect with other families who are living with similar issues.

From an activity standpoint, the kids keep us very busy. Connor (age 13) focuses on music and golf. Connor has been asked to sing at the opening of the MS Society Annual Convention in Minneapolis this fall!! Go Connor!! Colin (age 9) plays hockey and lacrosse. Maddie (age 6) and Gabby (age 5) have started a cheerleading class (yes, we gave in to cheerleading) and want to learn to ice skate this winter. Charlie (age 2), along with the rest of our kids, loves swimming at the YMCA! The kids also develop their swimming skills at grandma's lake and we love visiting with grandma in the summer!! This summer they even learned about insulating...as we helped to insulate grandma's new 'bunk house'!

THANKS to our Caringbridge Sponsor!!

Gillette Children's Specialty Healthcare is Connor's primary clinic and hospital for his Cerebral Palsy. We've included them as the Caringbridge sponsor since David (thankfully) hasn't yet needed hospitalization with his MS. Gillette Children's has provided outstanding care and set high expectations for us in health care providers.

Latest Journal Update

Yeah! Great news for David!!

Hi all - David's PET scan shows that his salivary gland cancer has not spread to other parts of his body!  He will be starting 6 weeks of daily radiation early to mid January.  He will not receive the chemo boost that is often used with this kind of radiation due to his multiple sclerosis (MS). The 2 kinds of chemo they normally use to give the radiation a slight boost cause neuropathy...think about the worst tingling/pins and needles possible when your arm or leg starts waking up from being asleep. Since MS also causes neuropathy and the pain can be extreme, the oncology docs feel that the slight boost from chemo is not worth the pain. This kind of radiation affects the mouth and throat and often causes issues with eating/swallowing. About a third of the people need a feeding tube. Pretty much everyone needs pain meds. David already has some issues with remembering to eat and not feeling hungry due to his MS so we will be watching that carefully. I'm thinking DQ malts, mashed potatoes and gravy and other soft stuff. Ensure (protein/meal shakes) will be on back-up although David is already resisting that idea!! It will be a long haul but the good news is that after 6 weeks plus another 3 weeks or so of recovery, he is very likely to remain cancer free!!!

About Mucoepidermoid Carcinoma (self check-ups are important here too) - It is rare to have a tumor in the salivary gland but most are benign. So, it is VERY rare that salivary gland tumors are malignant....and even more rare that they are a high grade cancer. They do not know what causes this cancer but it is not an oral cancer and is not caused by smoking, drinking and HPV (which are typical to oral cancers). This cancer was diagnosed due to an MRI for his MS. Dentists may also check for this cancer which can present as a harder lump in the salivary gland. Once we knew it was there...we could feel it externally!  So, check your glands (behind your ears) periodically!!