Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: December 4, 2003

The Stark/King/Olsen Family Jumps for Joy!

The 2003-year was an uneventful year for the S/K/O Family, no bone marrow transplants, no near death experiences for Robert and only one hospital stay.

In February, Robert’s lifesaving donor, Bob Heinis, his wife, Kathy, and two of their three sons, Michael and Bobby came to visit us during winter break. We were able to take the Heinis family to Cayucos with us to enjoy some 70-degree weather while at their home in New Jersey; there was about four feet of snow falling in one day. We had a wonderful time and at the end of the week, we got to show off the Heinis family to all our friends at UCSF. Bob told us all, that the giving of his marrow to Robert, was one of the most important events in his life and that at the time of his giving, he had the same feelings as he did on the days his sons were born. We were all teary eyed. During the week we found out how much we were all alike and I have listed a few similarities below:

Bob=Robert

Twin=Twin

Bob has three sons=we have three sons

Bob’s wife is Kathy=we have a Kathleen

The Heinis family is Catholic=the S/K/O family is Catholic

Bob likes to talk= the whole S/K/O family never stops talking

We are hoping the Heinis family can join us during Spring break in 2004. Last year during April, the three men were hiking the Appalachian Trail. They started their trip in March and completed all 2172 miles by the end of August.

Onto what is happening with each of us. This was a year of learning to live all together again. Robert has gone one full year without spending one night in the hospital. This is remarkable because this is the first time in his whole life that he has been hospital free. He now takes one medicine a day vs. twenty a year ago. At one point after the bone marrow transplant his weight was as low as 26 pounds and he had to have intravenous feedings. Last week, Robert weighed over 50 pounds.

In fact this year, our big stay in the hospital, an eight-day stay, was with Marie. Marie complained about a stomachache one night and within 24 hours, her pediatrician diagnosed a ruptured, abscessed appendicitis. This little event earned Marie and I eight days in the hospital. Mark had knee surgery just after Marie went into the hospital and it felt like old times for our family. The other major stay in a hospital was our own physician, Mark’s dad, who almost died and spent about 12 weeks in the hospital. I have never seen anyone with a tube down his throat try to ask so many questions. Fred is on the mend and he is helping the family go through some other medical issues.

After the appendicitis, Marie went on to her freshman year of high school and her first year of cheerleading. She tries to fit in her homework after cheerleading practice and cheerleading competitions. “Mandatory” is the favorite word in the vocabulary of a cheerleading coach.

Allyssa has just discovered that it is pretty nice to be beautiful and have hair that looks like it is spun out of gold. She has the nicest friends and seems well adjusted to middle school.

Nick has found sports or I could say, all sports have found Nick and it is true love. He placed 8th in the county two-mile cross-country meet with a time of less than twelve minutes. And his soccer team, the Maggots, came in second in their age group.

Matthew, now what can I say about Matt? He has more charm and charisma than any child should have. Matt has learned that he must read twenty-eight books to earn a $31 toy and sometimes tries to accomplish this task in one sitting. Negotiations with Matt are time consuming and they absolutely wear me out.

There are still a few issues with Robert, time will tell how much damage has been done to his cognitive abilities and how much we might be able to expect of him. We take each day one at a time and continue to pray that at some point he will catch up to his peers. He is a joy to behold and there are constant reminders of the advantages of Bob Heinis’ marrow running through his system. The miracle of Robert’s health continues to catch us by surprise each time we look at him.

We do have a new member of the family, Bagwell. He is a six-year-old dog we are working on adopting. Bagwell is, part lab, German Shepard, and terrier. He likes to herd people and the kids are trying to train him to break this habit. Allyssa and Nick are responsible for their new pet and they are learning about sharing in a big way.

Mark is traveling a lot, at least a week a month. We miss him terribly when he is gone and Robert pines for Daddy. I have learned to fix the printer, recycle, etc. But darn those running toilets, they have to continue running until Mark gets home.

Mark is still running marathons and fishing. Right around his birthday, he caught a 25-inch long halibut and ate it for lunch.

My life is full of the children’s hospital, city council work, dentist appointments (eight appointments in two weeks), doctor’s appointments, etc., etc. If you want to know more about the children’s hospital, you must read the newsletter and I know each of you are on the mail list. If you want to know more about the city council meeting, you can move to Saratoga and watch it on channel 15. If you don’t want to move, I can send you last night’s tape with all 51 people speaking three minutes on why we should or should not put in a trail through Saratoga.

We have truly been blessed with wonderful friends and family. My brother Dan, “Uncle Dan” to all of you and my mom continue to help us out. Lillian, Jennie, and Marianne (not all at once) try to keep things moving well in the house while I escape into outside tasks. Father Jim continues to remind us that we have a loving God in our lives.

We lost another young friend this year and we think of her and her family everyday. I wish I could share many of our special milestones with my father and I often stop during the day to tell him about them. He continues to encourage me to do the right thing and it is my fault that I am not always listening.

I wish I could write something in this letter that was a fascinating or unforgettable quote but all I can think of is:

Wash your hands as often as you can and never eat off someone else’s plate or drink out of someone else’s glass. And if you are healthy, try to jump for joy.

Love from the S/K/O Family