Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: December 4, 2002
The Stark/King/Olsen Family Update
As many of you are already aware, the above family (S/K/O Family, for future reference) had a year of many ups and downs; Robert’s second bone marrow transplant being the biggest event of the year.
In February, Robert stopped taking immuno-suppressant medicines and soon after his blood counts began to drop. A follow-up bone engraftment study showed that he was losing his engraftment. This was confirmed in early March and his unrelated donor (we now know as his guardian angel, Bob Heinis) was contacted and asked to donate again. Bob readily agreed and our Robert was back in UCSF by March 25th starting radiation to prepare him for his second bone marrow transplant. As many of you know Robert’s first bone marrow transplant (BMT) was a walk in the park versus the second transplant even though he was in much better physical shape at the beginning of the second BMT. We could see a difference in Robert physically and mentally after the first transplant. Unfortunately, the last few weeks before he went back into the hospital, we could see his walking and balance worsening.
During the second BMT, we were able to really learn the value of life, family, friends (new and old), altruism, prayer, God and our belief in the here after.
Life is a true joy especially with the people that matter. On the day Robert almost died, his Grandfather Fred and his Grandmother Jody were there to alert the right people that Robert had stopped breathing. Uncle Tim and Aunt Margie took the other four children allowing Mark and I to get to the hospital within one hour. All of our family spent the next ten days being our support and working to keep life normal for our other children. Family and neighbors brought dinner over many nights (one of the nicest things you can do for a family in need). Our new friends, Brian, Brenda and Somphit were there anytime we needed a break or a cup of Starbucks. The nurses, aids, and doctors are truly angels put on earth to help us survive and as Father Jim would put it, “They will go to heaven in a Lexus when their time comes”. Mark and I took turns in the ICU, making sure one of us would always be awake with Robert, keeping an eye on his intubation tube, his many lines, and the medications he was receiving. Can you believe “Three’s Company” is still in re-runs at 2:00 a.m.? I hope we never really wore clothes like that or were that promiscuous.
E-mail was a true lifesaver! When we could not find Robert’s “Men” and were panicky, we sent out an emergency message on e-mail and my sister Judy drove 300 miles, holding “Will Smith” in her hand all the way, two cousins found more “men”, a Head-Start group in my aunts area found one and Brian Bender even found one in the treatment center toy box. There is not a day that goes by that I do not bless each person that sent us one of Robert’s favorite toys.
For Robert and our family, there were many of the quiet heroes; almost every family member on each side did something to help without even making us aware of it. My brother, Dan and my mother, Rita did something almost everyday to try to make our lives a lot easier. They haven’t stopped yet and we quietly hope they never will.
And our priest, Father Jim, and our parish prayed for Robert at each mass. Most of you were adding your prayers as well; thank you.
The rest of the kids are doing great. They do miss having their friends over to visit and sleep over (we have to avoid this until Robert is healthier). Robert’s twin, Matt has started kindergarten and at first he felt he should lead his class and that his teacher should do what he wanted. Fortunately his teacher, Mrs. Cook or Mrs. Cookie, the name the kids have given their teacher, is part teacher, part saint, and part actress. She is the first person I know that has been able to break through Matt’s charm and get him focused where she wants him to focus. If anyone wants to see a dream team led by a dream teacher, just visit Matt’s class. Matt has also just lost his two bottom front teeth and talks a little funny. He has his future wife picked out from his classmates and his grandfather has already given his approval.
Marie, Allyssa, and Nick are doing very well. Marie is working very hard to keep her grades up; she doesn’t want to go to an all girls’ high schools, our plan if her grades slip. I keep talking about the cute uniforms but she does not see the humor in this. All three are out of braces and into retainers and if Nick does not stop playing with his, I am going to make him eat it. Homework each night is a real challenge but Mark and I crack the whip. Allyssa and Marie are very fast on instant mail and like to spend free time with a phone in their ear and their fingers on the keypad. Nick would rather turn the house into a gymnasium, amphitheater, or stadium.
I am still working on the hospital and enjoy the encouragement I receive from each of you. Mark is traveling more but looks great, having lost a lot of weight after returning home and leaving behind hospital food. He is training for the Napa Marathon in March and hopes to qualify for the Boston Marathon. I am attending more night meetings and I will be sworn in as a Saratoga City Council Member next week. We are all looking forward to the February visit of Robert’s donor, Bob, his wife, and two of his sons.
We miss some of our friends and family who are no longer with us; not a day goes by that my siblings and I don’t ask our father, Jerry, for advice and make ethical decisions based on our belief that our decision would match the decision he would make given the same situation. We miss JoJo (I look at his picture everyday) and his father Jonathon. I still miss my friend, Barbara. I often read a quote that I read in the newspaper after Flight 175 crashed into the World Trade Center’s south Tower. Brian Sweeney left a message to his wife, Julie, on their answering machine. “Hey, Jules, it’s Brian. I’m on a plane and it’s hijacked and it doesn’t look good. I just wanted to let you know that I love you and I hope to see you again. If I don’t, please have fun in life and live your life the best you can. Know that I love you, and no matter what, I’ll see you again.
We pray that Joanne and Chatra will get better and that a cure will be found for leukemia in our lifetime.
We thank you for all your love and support and request that you continue it even after Robert is healthy and completely recovered. As Father Jim would say, the second two most important words to say in the English language, are “Go 49ers” and the most important two words we can use in our vocabulary, are, “Thank you”.
Love from the S/K/O Family
