Saturday, March 29, 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.
Sunday, March 9, 2014
A couple of little surprises March 9, 2014 During the last couple of weeks we each had a nice surprise from Kathryn. I was telling Scott just how bad I was feeling and how much I missed Kathryn. I think this second year has been harder that the immediate and the first year anniversary. It is more real and really makes it sink in that Kathryn will not be with us as a person ever again. Scott told me he was really thinking about Kathryn and there it was for him, a penny. He finds pennies when he thinks alot about Kathryn and needs some comfort. In the book I read the author said that pennies can be a sign from our loved ones. Now I know what that doll I have is all about. The title of the doll is pennies from Heaven and she has her little hand out and has several little pennies in her hand. One day the last week of February I walked into the school building at the same time as my friend Sue. We started to talk and of course cancer came up. Her husband had a bought with throat cancer and she was telling me how a couple of other friends of theirs had the same thing too. I was telling her how I was told that Kathryn’s type of brain tumor GBM was usually found in 40 to 50 year old men and found in the frontal lobe. I have recently found or fallen upon a few young girls with GBMs and I told her that one of them was really ill and probably wouldn’t make it another week or two. She did pass away on the 4th of March at 18 years old. Her name was Amber and a beautiful girl full of love, spirit and life. Cancer is such a bad deal. There is also the 16 year old girl with the GBM (Catherine). I emailed her Mom about the T-Cell treatment. I didn’t hear from her for a couple of days but she finally responded and said she was looking into it. I’m glad to hear that. When we were in Houston this was just beginning and they would not use it on Patients like Kathryn. I’m very excited to say that our house is pretty much back in order. The kitchen is beautiful and I just got my couch and love seat back all recovered. They look beautiful. Simple like I am trying to make things here. Last weekend I spent the weekend pulling wallpaper and painting at my Mom’s house. It was fun because two of my three brothers were there. We had some good memories to share and some good laughs. My other brother had some serious foot surgery so he can’t help but he called to see how things were going and sent us some girl-scout cookies “Yum.” Scott’s been a big help too. When I first walked in it was pretty overwhelming but now it seems that it is coming together. Last Sunday, 3/2/14 I was given a sign from Kathryn. I had been feeling very down and asking for a sign from Kathryn. I asked God if I could please see her or have something that would let me know she was near. Well, My Mom and my brother Pat were all getting ready to leave my Mom’s house and we were in the garage. Now, I have been in the garage the last two weekends and even swept the garage and picked up down there. This day after asking for a sign there it was. On one of the hinges of the garage door was a green ribbon. I had not seen it before and I had looked at the garage door several times. I went over to it and said, “Do you know what this is?” I said, “This is from Kathryn’s 18th birthday party.” When my Mom and Dad moved out the house was empty around Kathryn’s birthday 2/9/09 and she asked my Mom if she and Cody (her BFFE) could have their 18th birthday party at her house. Well, of course she said yes. Kathryn and Cody decorated the garage and used those green ribbons to tie up balloons and such. As I was touching the ribbon my brother Pat came up to me and held the ribbon in his hand and said, “ You mean Kathryn’s little hands were the ones that tied this ribbon here. She was the last one to touch this ribbon. Then he held me as I broke into tears. Then I spotted another one and pointed it out. But Kathryn probably didn’t tie this one because it was up too high. We all laughed. The ribbons were either put there after I asked for a sign or they have been there for 5 years and through three different renters. I don’t know which is more believable. March is an interesting month. This is when cancer started for us. On March third 1999 I took Kathryn in for the second time and they did the cat-scan and found the tumor. On March 5th we met her surgeon and on the 8th she had her first brain surgery. Cancer has filled our lives every since then but it hasn’t taken our love or the life we still live. We still have so much and I know Kathryn is here. Not only did I find the green ribbon but I also went into her room and I could smell her so strong. I said, I know you are here Kathryn. I was borrowing some of her items for our spirit week. I knew she would love to know that I could use her things to have fun. Scott and I went to a camp-planning meeting on the 4th. There were many good ideas to make camp super fun this summer for the kids. On our way home we just missed a big accident. There was a jack-knifed semi in the middle of I-5. It just happened and I was able to drive around it and the other truck in the HOV lane. When we got home we saw it one the news and a huge back up of miles and miles. On the 5th we attended the Grapevine Event. This was also in Seattle. This is a meeting to invite new and old people who might want to or have attended the Wine Auction which is a big fundraiser for Camp. Every time I have attended one of these I meet new people who I just fall in love with. This time the speaker was a Mom of a little boy who attended the Drive-a Thon that Scott started. It was a track day that raised money for camp. This Mom spoke about how cancer changed their lives forever. They had to move from Alaska to Seattle to be closer to doctors and hospitals. Colin was diagnosed with a terrible form of Leukemia when he was 2. He has side effects that have made it so his joints don’t move. His growth is obviously stunted. He is 10 and his brother who is 3 years younger is taller than Colin. He still takes a huge amounts of meds and is watched by doctors all the time. She talked about the financial part of cancer too. The million dollar limit was reached the first 2 months of Colin’s treatment. Every year they spend 10’s of thousands of dollars out of pocket for Colin’s treatments that he still under goes. She mentioned this because she appreciates a camp for her kids that is free of charge. She understands the value of a dollar and would never be able to send her kids to camp if Camp Goodtimes was not around. She also talked about how wonderful it is for her boys to have a week of fun and she doesn’t have to worry about her sons and she is given a break. She has not been far from Colin every since he was diagnosed. She has been by his side and always watching over him. She is a full time caretaker of a very sick child. But for this one week she gets to be a woman without the worries. She knows her boys are in a safe place with nurses and doctors right there and a fun and loving staff. She gets to relax this one week. I never thought about how this week was for me until she mentioned it. It was my week to do a big project. It was my week to surprise my kids with something that I had created. I made them furniture, painted their bedrooms or maybe it was a project around that house for the family. They got to the point where they would come home and ask, “What did you do this time Mom?” I loved surprising them. It was a week for me too! This weekend Richard and Bee came down to visit. I love seeing the two of them. Richard made a delicious breakfast Saturday morning for all of us. My Mom was here too. Richard and I had a talk about feeling bitter and feeling sorry for yourself when you lose someone, meaning Kathryn. We all have those feelings but we both agreed that we can’t let those feelings take over your life. I have had those feelings and sometimes you do feel sorry for yourself but you are not alone. There are other people who have lost children and I feel sorry for them. I thought many times that I must have been a bad Mom and I was being punished for something and losing Kathryn was my punishment. But then I realize that there are so many wonderful people who have lost their children and wouldn’t deserve punishment. In fact it seems like the best parents are the ones that lose their children. I just don’t get it. So it really doesn’t have anything to do with being a good or bad parent or good or bad person. It just happens. We can’t go on feeling sorry for ourselves or being bitter because it has happened and we need to live life. Richard and I agreed that there are those sad times and when you do fee sorry for yourself but we just can’t let them be who we are. We choose to live the way we were and the way Kathryn would want us to live as best as we can. Richard, Bee and I all went over to my Mom’s house. Richard was excited to show Bee as she has heard a lot about the house. It was fun to hear him talk about how much he liked the house and I talked about how wonderful it was to grow up in this house. Then I shared with him and Bee my story about the green ribbon. I think they were a little stunned. I’m not sure how Richard takes it but I know Kathryn gave me that sign. I asked as I have before and I received just like I have before. I think if you believe you will see that the ones who have gone before us are really still here in spirit. So, tonight is the first night of the TV show “Resurrection.” Richard said it looked creepy and so did Bee. I’m curious to see how they do this show. How many of us have thought about someone coming back from the dead. You know I have. I would make it work if Kathryn were to come back. It could be complicated but I would make it work. It may be too late and I may fall asleep but Scott and I are going to try to watch it.