×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor The Harthorn Clan with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

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

David's Radiation Starts Today!!

Hi all - 

David's radiation starts today and will happen every weekday for 6 weeks! They create a mask for the treatments so that they radiate the same exact area every time. They also have him wear mouth guards during the procedure and wear fluoride mouth guards at home. It helps keep his mouth as healthy as possible. Mouth and throat pain appear to be the most difficult side-effects from this radiation treatment. David will very likely be on narcotics for pain and will need to eat very soft things after the first couple of weeks. If the pain gets too bad or he starts to lose too much weight, a feeding tube is a possibility. Evidently, the radiation builds on itself so the first couple of weeks are not that bad and then it gets more difficult. He will also be very tired...which is already an MS Symptom...so not looking forward to that one either! Some of the negative side-effects will last several weeks after the treatment. So, it will be about 10 weeks until David is feeling well again. But 8-10 weeks of some pretty rough side effects will hopefully = cancer-free as an end result.

On a family note, our kids are learning to cook their own breakfasts. David has been the amazing short order cook dad for breakfast and he doesn't much like anyone in the kitchen with him. Charlie (just turned 10) is now pretty proud that he can make pancakes! David is a great cook and does most of our shopping and cooking. Oh...in case anyone wonders...I'm a good cook too but just don't have the time with kids' athletics etc. once I get home from work. So, when I need to cook, it is usually something like scrambled eggs or grilled cheese or take-out! Our poor kids think that is all they will be eating for the next two months although they are going to try to start cooking too! A number of friends have offered to start the 'Meal Train' for us.  We will see how it goes and decide about the Meal Train idea within the next couple of weeks!

Please feel free to sign the guest book and wish David well! HUGE thanks to everyone!! The support has been overwhelming!!

heart
1 person hearted this

Comments

7 Comments

Jill Gilgosch
By Jill Gilgosch
Thinking of you all...just hoping the radiation treatments are manageable for David and also praying that he is being strong and resting when needed and taking in nutrition as that is key..protein protein! Keep me posted and please let us know if you need anything. HUGS from the Gilgosch Family
Barb Uschold Anderson
By Barb Uschold Anderson, St. Joe's Pastoral Care
Keeping you in prayer, David!
Colleen Moore
By Colleen Moore
Know you are thought of often and praying for the whole family. I am willing to help set up a care calendar that can help with meals or the kid/husband shuffling. You have a huge family and friend support. WE are all here to help. God Bless
heart
1 person hearted this
deb gnotke
By Dave and Deb Gnotke
thinking of you all thru the weeks ahead. Positive thoughts and hugs and prayers to you all.
heart
1 person hearted this
Carol Pepin
By Carol
David,,, Sending you tons and tons of well wishes... stay strong and hang tough
heart
1 person hearted this
Laurie Kielbasa
By Love Auntie Laurie
Thinking of you all and sending lots of love your way. Big hugs to David! Hang in there!!
heart
1 person hearted this
Tom Oscanyan
By Tom Oscanyan
I wish you and your family much strength and many blessings!
heart
1 person hearted this