Saturday, March 29, 2014
March 29th 2014
March 29th 2014 I should write more often so my blog doesn’t get so long. But I just can’t find the time to sit and write. Our friend Nick who is a senior this year is going to have a bone marrow transplant and do t-cell therapy along with it. It is his third bout with cancer and once you have had Leukemia you have to take a different route to get rid of it. He had the chemo and radiation and that is probably what caused his second and third cancers because it actually started with a brain tumor like Kathryn. Nick had a bone marrow transplant years ago when he was first diagnosed with Leukemia. We are with him and his family. His friends are very supportive and he and his family are positive people which all helps. Scott and I went to a piano concert the a few Friday nights ago. The choir and band teacher gave me the tickets. It was a religious concert that I was really glad we went. The pianist is about 62 and can really rock the piano. He was a child prodigy at 10. He is amazing. But his story is even more amazing. One song was about thanking God for closing doors. We all think about doors opening for us and giving us opportunity but he was thanking God for closing doors. I get it! The doors that closed would have changed our lives and not always for the better. I couldn’t think of changing any thing in my life. It is mine and if I had walked through another door I wouldn’t have had Kathryn and wouldn’t have Richard and of course that would mean not having Scott either. My children are who I am and they are part of me and I love what I see. This man also talked about the power of our words. Words are stronger than we think and they can never be taken back. You can’t undo what you have said. Once those words come out and are heard they are there forever. My dentist had a poster on the ceiling that read, “I chose my words to be soft and sweet, for I don’t know the ones I may have to eat.” This piano man talked about the last two words his Dad ever said to him. His Dad was a mean drunk and had threatened to kill his mother and siblings many times. One night he missed the garage and drove the car right through the wall of the bedroom he and his brother were sleeping in. His Dad looked at him and glared into his eyes and told him “You’re Worthless.” Then his dad put the clip into his handgun and put it between the boys eyes and said he was going to kill him. That night and those words were with him for years. He felt and lived his life as though he was never good enough. Even though he was and accomplished piano player and songwriter and one of the best, he never felt good enough. He found God and prayed to be able to forgive his father. Instead he was given an image of a little boy who was crying and scared. It was his father and at that moment he was not able to forgive but to love his father. To love him as he was just a child himself who was not given a happy loving home. His father who was never good enough. Now he understood his father and was able to love him. As I child I was always taught that sticks and stones may brake my bones but words could never hurt me. Not so true. Words had caused this man a great deal of suffering for years and years. As cruel words hurt many people everyday. I also had a dream about Kathryn. It must have been when she was first diagnosed with cancer. We were in the locker room of the “Y” and I was getting her dressed after swim lessons. There was another Mom there too and we were discussing the girls throwing up and getting sick from chemo and what would help them feel better. Even though we were having this conversation I was brushing Kathryn’s long blonde hair. She never had that long blonde hair after cancer. Back to words hurting or not understanding a person’s situation. At a conference I was at in one of the classes this teacher shared a story with us. There was a boy in her class who stopped doing his homework and she inquired about it. Well, he said it is getting darker outside and we don’t have any electricity so I can’t see to do my work. She also shared about a woman who was always just a little late to work. Every day she was 15 minutes late to work. Everyone in the office just couldn’t understand why she was always late but had the time to go by Starbusks to get her morning coffee. When asked she explained that she and her husband only had one car that they shared. He would pick up the coffee on his way home. It was the only time they had to talk to each other since they worked opposite shifts. She was late because she didn’t’ have her own way to work and had to wait for her husband to pick her up. The piano man also had a story about misunderstanding. He and his siblings would sometimes have to escape from his drunk father. His mother actually left the keys in the car and had a code word for the kids, which meant to get to the car. They would take off long enough for the drunk man to pass out. Sometimes they would just sleep in the car all night. So, the next day when Mom dropped them off at school they had no supplies, no books, no homework and were wearing their dirty play clothes. Of course they got in trouble and were marked a problem children at school. But, no one at the school knew the truth. They were told never to tell anyone about the problems they had at home. So, the children kept quiet and took the punishment at school. Last Sunday I went to Michaels to learn how to make these new rubberband bracelets. There were 5 or 6 little kids there with me. I was having a good time. The little boy who made the big long chain of these for cancer awareness came up in conversation by one of the boys. He told me he had a friend who was dying from cancer. I told him my daughter had died from cancer. We made a little connection. It was sweet. He said he was so sorry to hear about my daughter. He was a great kid. Well, they all were. We were helping each other and comparing where we were in our process. What a fun couple of hours. I really smelt Kathryn that day. It was amazing! Our cabin is rented by two families over the winter. They have been a blessing and they love the cabin. Of course one room is Kathryn’s and has her touches in it. They are so respectful. They wrote us a note telling us how much they enjoy the cabin. They have done this a few times. Most recently Scott talked to one of them and it made Scott comment that “It is a happy cabin.” It is! We have had some great times there. Just a few facts. Did you know that only 3.8% of funding for cancer research goes to pediatric research? Sad – that it is such a low amount. It is only because kids don’t have the access or knowledge of how to voice their concerns. One in every 285 children get cancer. That is so high. It isn’t rare. That means it happens a lot. That sucks! I had heard of pediatric cancer before Kathryn was diagnosed but I never knew how close it could get. I actually did fundraisers with my math classes at Mason for St Jude’s Children’s Hospital. Not knowing what was to happen in just a few years. Richard’s graduation ceremony was Saturday the 22nd. We went up on Friday night (to Bellingham). They (Richard and Bee) had prepared a beautiful dinner for us (Scott, Myself and My Mom). The ceremony was very nice. I didn’t think I would be taken by emotion but I was. I cried! I’m so proud of Richard. I also watched one of Kathryn’s friend walk across that stage. Kathryn should have been there. She would have graduated at this time too. I’m so sorry that the world will be missing out on such a beautiful person. She added so much to all of the lives she touched. After the ceremony we took a few pictures and then went to lunch at a cute place. It had a Marti Gras theme. The food was different but really good too! I had another dream about Kathryn. It was so real. It was her in the present time. We had our house all decked out for Christmas. Of course I would dream it was Christmas – her favorite time of year. She was decorating her bedroom door. I was probably dreaming this because I was thinking about her door with all the stuff on it. What to do with all of it someday. Whenever. Well, she was asking me about a second door and if it would work putting it on hinges like this and that. We tried it and it was like a secret door because you had to open one to get to the next. She had it all decorated with stripes of ribbon. Different ribbons that went across horizontally and stuck out away from the door. they didn’t lay flat. Beautiful and colorful ribbon. She was talking to me and it was so real. I told Mooselips about it at a Wine Auction meeting. He said, “You must hate waking up from dreams like that.” I do hate waking up to the reality. But in the same time I love having those dreams. It keeps her close and alive. Friday the 28th – In my 6th period class one of my students commented on my t-shirt. I was wearing the rain cloud one that says “Let a cure rain down.” I said Kathryn had designed it. They were impressed. I said the new ones have a printed statement of her dates and that she designed the shirt. Then we got off on the cancer talk. We talked about how there are different types of cancer. Some are very easy to cure and people go on living. Others are a death sentence the moment they are found. One girl shared how her Dad gets cancer every year. She said his body secretes something that causes cancer to grow but they are able to get rid of it each year. I never heard of this. I told them how Kathryn’s first cancer now has a 90 to 95% cure rate. But, her second was incurable. They actually told us that they were only doing paliatative care and I explained to them what that meant. I also told them how we were told we would be lucky to have her a year and we almost had her two years. One girl said, You showed them. Her reaction was just like mine. I appreciated her feeling the same as I did. We did show them. But in the end they were right. There are only a hand full of people (if that) that have survived this beast. We went on to how doctors have to be so emotionless when talking to patients. We discussed how they have to. They couldn’t possibly handle getting emotional about every case they work on. I then started to tell about Kathryn’s doctor and could not hold back my own emotions. They asked if they could give me a hug? I said, “No, It’s ok I can do this.” I choked out the story of her oncologist breaking down after seeing Kathryn in the ICU. He had to go into another room and just cry and cry. The nurse said she had never seen anything like it. No doctor had ever cried like this. It had to be hard for him. He loved her so much. His daughter was Kathryn’s friend. Kathryn talked him into volunteering at Camp Goodtimes. He had to tell her she was dying. He had to tell her she only had 3 to 6 months left to live. That must have torn this man apart. Scott and I were talking about it and he said that Dr. Morris’s PA also cried. She cried the day we knew what it was. Why, because everyone knew what it meant. Then we talked about Dr. Morris. I said he was always so cute with Kathryn. After her surgery she had to stop driving for 6 weeks –regular protocol. At the 6 week visit she asked him if she could drive. He asked her, “Well, do you think you can drive?” She said, “Yes.” and he responded with, “Then you can drive.” It was the same type of question and tone when she asked him when she was 8 years old, “Do you have to shave my head?” He responded with, “Do you want me to shave your head?” of course she said NO! He said, “Well then I won’t shave your head.” You couldn’t even tell she had surgery. He took out a very tiny sliver of hair. She had very long beautiful hair that was all gone in just a few weeks after starting chemo and radiation. I thought he handled her so well. She took a liking to him as he did to her. He is a very serious kind of guy but our family got him to smile several times. The class discussion had to go back to math. We probably could have shared cancer stories for an hour or two. The kids had a lot to say. It was good for me and good for them to share. So after school I went to visit Nick. He was part of our school conversation too. He is into cars or should I say his truck. He showed me a video of doing a burn out in his truck. I just saw dollar signs as I thought of his tires burning the rubber off of them. I also thought of how he has found such joy in such a simple act. When I went into his hospital room it was decorated with posters from his friends and he had three friends there. The two boys were something else. They were joking the entire time. They are good for Nick. He was on an IV pump just getting fluids at the time. His chemo was coming shortly. Five days of intense Chemo. He is a senior and I was wondering how this is going to work for him as far as school goes. He will be getting a bone marrow transplant and will need to move to Seattle to be close to the hospital. He has three months that will put him into July that he will either be hospitalized or living in Seattle. He didn’t look too happy about that. But when this three months saves his life, it will all worth it and the time is just a blip of time. He has a bone marrow donor all lined up. He will also have t-cells taken at the same time as the blood or bone marrow is taken. I didn’t really get that part completely straight. He is taking it as something he just has to do. As do all of the kids and many adults do when they have cancer. You just have to do what you have to do. It was a good visit. I think Nick will be coming back to camp in 2015. He wants to bring his two friends too. We even talked about camp names. It would be great to have the three of them at camp together. That’s it. I am off to try to find discounted flowers or even better, free flowers for the wine auction. I’m also going to see if I can get a sponsor and some free pens. Wish me luck.