Thanks

I wanted to thank everyone who has donated a book or some money for our special bookcase at the clinic. These books mean a lot to the children who come to the clinic and every time I go in to straighten the shelves and add more books, the staff tells me how much the books help and has become important to the children. Cindy, the nurse pictured below has told me there is one little boy she really has a hard time getting to sit still so she can take his blood pressure. He is really into construction equipment and she uses the books we pick especially for him to bribe him to sit still. I remember when Karl was into that and wanted to be a bulldozer operator when he grew up, so I can identify with this kid. Cindy also tells the kids that the books come from the “Book Fairy” which is a title I am proud to wear.

We appreciate the grant we received from the Sunshine Lady Foundation and all of you who have mailed in money. Some times we will receive a book that is part of a series and I like to be able to go and buy—and it is often at a used book store, to finish out the series. That way the child has all the books to read. Living with Karl, the big reader, I learned how important this is. We all want to know what happens next in the story, don’t we?

So, a special thanks to all of you who have helped me make this possible for these kids who need this form of escape so badly.

My love, Kathy the Book Fairy

Kayla and Cats

One week day this past summer I was up at the clinic putting out new books and straightening the shelves. Hardly anyone was around. I always try to go after clinic hours because the clinic is very small and I could easily be in the way. A young woman came up to the books and said to me how glad she was the books were there. After we talked for a while she found out that I was the one bringing them, and she thanked me. I thought she was a patient’s sister, but it turns out she is Kayla’s mother. Kayla had just gotten out of the hospital where she had been staying for 2 ½ months and she was in a back room in the clinic in isolation receiving her day long treatment. The books were a wonderful distraction for her and her mother told me Kayla especially loved books about cats. She has a white cat at home and I know she is glad to be out of the hospital and able to go home to her. I went back and met her from the doorway. 6 years old and looking small, bald and tired. I waved and told her I would look for more cat books. Because she has been sick she has not been able to start school. These hospital rooms have been her school. I went to the store and found a small, soft pink backpack and put one of Sue’s white cat Beanie Babies and some small cat books in it and took it to the clinic for her the next time she came in. The nurses told me later she was thrilled with her gift. Later this summer I was in again and Kayla was there looking much healthier and happier and she left the clinic with her pink backpack on and another cat book under her arm. She is another special friend and lets me know how important these books are.

Our 17 year old cat, Alice, died in June. She used to love to sit with Karl and knew how to get his attention by sitting on the comics or book he was reading. Dr. Gold’s cat died that same week. Our friend Margaretta lost her 20 year old cat, Marmalade, recently and I like to think that Karl has some good cat company now. He wrote in his 7^th grade journal at school: “If I had to describe myself as a dog person or a cat person I would probably say a cat person. It’s a tough decision for me since my family has 2 dogs and 3 cats. I chose cats because dogs get smelly and cats hardly ever do.”

Cats can be a comfort and a pain. Our cat, Purple, brought a live bat into the house last night at 3 AM and it is still trapped in our hall bathroom. Catching it will be another story.

Phil Holmes, the principal at Ephesus Elementary School where Karl attended for 6 years is having a book drive for us Oct 17-24. We thank him for his help and interest.

Thanks for your support.

Love, Kathy

Zach

On one of my first trips to the clinic with bags of books to restock the shelves, I met a 13 year old boy named Zach who loves to read. He was disappointed that day because all of the books on the shelves were “too young” for him. He has remained in my thoughts and every two weeks I take a special bag for him in hopes that there will be something to help him escape into the world of reading. As I arrived one day later in the summer one of the nurses yelled out to me, "Zach is here today!". And there he was looking a bit off color, bald, hooked up to the IV receiving his treatment (I think he has leukemia, but that's certainly not what I want to talk to him about). He was very intent on a pencil drawing and I sat down with him and we talked about books. I had brought him the new Harry Potter book that Fran Schaefer had given me, and he told me he had already finished it. The nurses spotted that special book and put it in there "Birthday Box". So, he took home the Artemis Fowl books instead. He was there with his mother and sister--they drive up from Wilmington. While I was putting out the books I discovered an old issue of National Geographic Kids magazine that was Karl's and I said here is something else for Zach to read. By now he his lying down feeling extra crummy, but when I looked over at him there he was with his head in the magazine. All of a sudden--just like Karl used to do, he blurted out "Did you know that they invented parachutes before airplanes?" He had a huge smile on his face--the first I had seen. It totally transformed his face. At that moment I wished I'd had my camera. Seeing him again really helped my day.

This past week when my friend Donna and I went in with a new load of books, I noticed that the special Zach bag was still in the nurses station. Cindy told me that he came last week and was in and out of the clinic so fast (and she was probably very busy) that she never had a chance to give him the bag. That was good news to me. That means he is doing better and more than likely enjoying 8^th grade.

Zach will always be special to me. He let me know that this book project is important and that Karl wasn’t the only one who loves to escape with a good book.

Thank you for your support.

Love, Kathy

Compassion

Yesterday, after she read my entry, Lessons Learned, my good friend Blythe said to me that I needed to add what people can say that will be helpful instead of just saying what not to say after I have told them my news about Karl. I thought about this after our conversation and the answer came to me on a walk in Duke Forest.

Little Bear and I were on our return trip to the wooden bridge and met a group coming toward me. I realized it was Adam Abram and his family. I worked for Adam part time 20 years ago as an office assistant in his commercial real estate firm while I was getting my plant nusery started. I stopped them and introduced myself. We have been distant neighbors all these years and our paths just haven’t crossed. They said they think of me often as they turn the corner and pass our nursery sign. I told them we had decided to have a “Going Out of Business” sale next spring. It was time for me to move on. They were full of good questions and I explained about Karl’s death and my need to do some sort of work around children. I also explained about our UNC book drive and they were most interested. I felt myself tensing up for the typical sharing of another’s medical story and to my extreme relief it didn’t come. The only thing that was brought up was of interest. Their handsome son explained that his college roommate had lost his mother to cancer and he had started a similar book drive in her memory.

I came away from our encounter feeling good. The words sympathy and compassion were running through my head. That is what I need as a response to my sad news of Karl’s death. They genuinely cared about how I was doing and did it in a way that didn’t leave me crying, but feeling good about the work I was doing in Karl’s honor.

So, compassion is what you should give. It doesn’t have to be long and wordy. Just real. Thank you Abram family for helping me find my answer and for your compassion.

Love, Kathy

Bookcase History

When we started going to the UNC Pediatric Oncology Clinic 3 ½ years ago, there was a wooden bookcase in the hall and usually there were some new books on there and we were told if we were interested we could take them home. Karl and I always looked, but usually didn’t find much of interest. The bookcase donations were started by a woman who had been an educator for years, loved children and she too was being treated for cancer. The books were from a publisher and were pre-proof copies. At some point this nice woman died and the flow of books stopped. For a couple of years those shelves have held the odd assortment of magazines that often end up in a doctor’s office.

A couple of weeks after Karl died in March, Chink and I agreed that we would like to do something for the clinic. They had been so kind to us and we were thinking there must be something we could buy for them. Dr. Gold suggested we put books on the shelves again. He knew how much Karl enjoyed reading and he daily saw those empty shelves. I thought it was a great idea and took it on as a project. I contacted our loyal friends who had supported us for three years and many of the local ones wanted to get involved. I asked Valerie to be a drop off point and we got the word out that we wanted new or gently used children’s books—preschool to early teens. Many people donated books their children had out grown and that got us started. The main difference between this supply of books and the ones that used to be on those shelves is that these are books our children have loved and read.

The clinic staff is so pleased to have these books for the young patients they care so much about. They tell me it has become the first place most of the kids head to after they have been checked in. They want to find a book. Dr. Gold is amazed how popular the books are even though it was his idea in the first place. The children can read the books while they are in the clinic or take them home if they want to. They have a lot of boring waiting around time—in the clinic and in the
car ride home. The books give them comfort they so desperately need.

Since I've been a mom and go to the clinic every two weeks to restock the shelves, I can see and have a good feel for what the kids will like. New preschool boardbooks and new releases are needed and I'd like to have the money to buy these. I can get discounts from local bookstores because I am buying books for the hospital and have ordered online and gotten good deals. This is why we are asking for money donations.

Thanks to those who have helped me make this possible.
Love, Kathy

Lessons Learned

Three and a half years ago it was very hard to tell people that our beautiful 10 year old son had a BRAIN TUMOR. Our hearts were bleeding and our souls were exposed. We expected sympathy and a hug if we knew the person and we always got that. But, what often followed was a story of their own---someone they knew or had heard of, who also had a brain tumor or had died of one. I used to stand in disbelief that this person thought I would want to hear this. Chink and my mom also experienced the same situations. I am not a psychologist, but it didn’t take me long to figure out that this must be some part of human nature to feel like sharing—almost by sharing they were letting us know they could relate to our pain. This is a lesson the three of us have learned. If some one tells you something like this, be a good listener. Give them sympathy and understanding and close your mouth on the stories that will probably pop into your head. They DO NOT need or want to hear them.

The other thing that is related to this, has only happened to me. Chink is not a talker, my mother is Karl’s grandmother and most people can’t relate to the fact that she is grieving so much, so this lesson is about Karl’s mother, me. I cried about this during the days before his death. Who could I be daily friends with? Some of the best friends I have ever made are mothers of Karl’s friends. I find it hard to make good friends. For 20 years I have been self employed in a perennial nursery where the other two workers are my mom and Chink. I loved the time with nature, but there weren’t many other people around. So, through Karl, I made friends with some wonderful people who will always be my friends, but we will no longer have the kid connection. We are going to work at remaining friends, but I knew even before he died I was going to have to move on and I didn’t want to.

One of the things I’ve done is join Meadowmont, an exercise center. My good friend Kitty Harrison helped me join and encouraged me because she knew the exercise would be good for me. She has been right. I do feel better for it. I had thought it might be a place to meet some new people, but as I look around, most people are churning away on their machines with headphones on listening to their form of escape. One day I did find a delightful woman walking the upstairs track as I was without headphones on and I complimented her on her hair, she smiled, and we ended up walking our mile together talking. Of course the conversation turned to the lack of rain and I found out she lives in the neighborhood near Phillips Middle School where Karl was a student. I know the neighborhood well because I used to take my dogs and walk before it was time for the last bell to ring to end the school day. I mentioned that my son used to go to school there and she eventually asked if he was at East Chapel Hill High School. I had to say, no I’m sorry to say that he died this spring and went on to explain that I was doing this book drive in his memory. She of course was shocked and as she recovered she started sharing stories with me about her 28 year old niece who as breast cancer, and the stories continued. I came home telling Chink about it and his reaction was just don’t mention it. But, this is what women talk about. We ask each other about our families, where we live, where we work. Karl has been the center of my life for 14 years and I don’t want to cover that up. I can’t. But, what I also can’t do is hear other people’s serious health problems right now. I mean, I know nothing about breast cancer. So, what I have been practicing is right after I tell them that Karl has died, I have to tell them that most people seem to need to share some health problem they know of, and right now I can’t handle that. This is hard for me to do. Basically saying “shut up” in a nice way. I have been role playing with myself on my dog walks in the woods. Karl and I used to role play situations that were bothering him. So far, I haven’t gotten up nerve to say it.

So, once again the lesson is to be a good listener and then shut your mouth to those thoughts of sharing other stories. Mothers like me are maxed out in that department.

Thanks for letting me share. My love,
Kathy

Some of our History

It has been almost exactly 6 months since our beautiful son Karl died. He travels with us daily and we feel honored to have had him physically here with us, even if for such a short time.

My husband, Chink, and I heard about Karl's brain tumor on a Tuesday afternoon in March 2004 after Karl's first of many MRIs. That news changed our lives forever. The next morning we told our then 10 year old son that he would not be going to his 4th grade class at Ephesus Rd Elementary School, but would be going to UNC Hospitals again to hear the results of his MRI. We were more than willing to have his new doctor explain the facts to him.

That was the morning we all met Dr. Stuart Gold for the first time and I remember he was wearing pants about the same color burnt orange as this page heading. He has since become a very good friend and I know from experience that he has a heart of gold, a calming and hopeful spirit and he relates wonderfully with his young patients.

As we walked into the oncology building for the first of many times, I can remember thinking, "Does Karl know what oncology means?". In the 3 years we were dealing with his brain tumor, I never once thought of it as CANCER. We always treated him as a normal kid with a health problem and we just tried to get on with life as normally as we could. He was never a complainer. He just seemed to know this was what he had to do.

Each visit we made to the hospital--usually every two weeks, included a bag of books and his Gameboy.He didn't like to waste time and he hated being bored. He had a wonderful ability to concentrate and this allowed him to escape into a terrific world of fantasy.

With the help of drugs, radiation, acupuncture, supplements and good food, prayers and lots of love from family and friends, Karl lived a much longer life than anyone in the medical field expected. Up until the last 6 weeks, he was able to stay active and in school and he continues to be an inspiration to everyone his life touched. With the help of UNC Hospice, we were able to care for him at home--he never spent a night in the hospital. My husband, my mom, Josie, and I were all with him here at home in his comfortable room when he died. He hung on as long as he could and we told him it was time to go.

We thank you for your continued support. I plan to use this site to relate my stories about my clinic kids I've gotten to know through this very worth while book drive. I want to share what a wonderful impact these books are having on the kids who unfortunately find themselves fighting very early for their lives. A child's world should be filled with make believe and fantasy and that is what I hope to help them with.

My love,
Kathy Humphries