Thursday, August 31, 2006
Miracles and Memories
Where do I start? ….
First and most miraculous, Alice had her MRI on the 9th of August, right after we had returned from our trip to the Tetons and Yellowstone (which was amazing!!). Her 6-month follow-up MRI was great!!! Nothing growing back at her most recent operative site, no new tumors seen, and her old tumor remains shriveled and inactive. Yahoo!! Miracles do happen. She is now 6 months out and stronger than ever.
And our trip to the Tetons and Yellowstone was grand. What a beautiful and unique place in the world. We had a wonderful family vacation with everyone in good health and spirits. The girls did their usual bickering, but it was all normal, healthy family insanity and fun. Wonderful memories.
We returned from Yellowstone on Tuesday, Alice had her MRI on Wednesday and then she took off for camp UKANDU on Sunday (8/13/06) and just returned Saturday (8/19/06). Camp UKANDU is a place of miracles. It is a camp for kids with cancer and their siblings. This was the first year Evelyn could not go. It was Alice’s 6th year at camp. She has always strategically had recurrences at intervals to allow her to continue going to camp. The kids get 2 years of camp after diagnosis, but it’s extended with recurrences. I remember when Alice had her 2nd recurrence (3rd tumor), Alice and Evelyn decided the best thing about it was … 2 more years at camp. Siblings generally only get a total of 2 years, but due to Alice’s pattern of making more tumors, Evelyn has attended 5 years. She actually holds the sibling record for attending camp the most years (a most dubious honor). But this year they asked that Evelyn not attend even though Alice had just had her recurrence, as she had exceeded the usual sibling attendance years and they needed to make room for new kids. Understandable. It made Evelyn sad as camp is a very important time for both the girls, but she was very mature and understanding about it all.
So Alice went off to camp. When I picked her up she was much more solemn than usual, though stated it was the best camp year yet. Seemed odd. …
They have a closing campfire at the end of camp for the families to share it. “Drool “, the lead camp counselor’s camp name, lead the campfire ceremony and read a passage from a book that I hope to get the exact passage. But it talked about the importance of telling and sharing stories. For a story is not just about entertainment, but really about memory. Creating memory and having memories to bring us pleasure and it get us through difficult times. Drool talked about how each of these kids have amazing stories and how camp in now part of their stories. And how they can take these stories with them, through the wonderful and the difficult times. How true. This is what camp has always been about for my girls … wonderful memories that bring them strength and joy even in difficult times. Much like the "make-a-wish"
trips … creating memories, which carry us on … through good times and bad.
We took off from camp after meeting several families I had wanted to connect to from our community; families that I have only spoken to on the phone or e-mail, or have just heard about in the children’s cancer grapevine. That was wonderful for me. Then Alice and I took off for the drive home – about 2 ½ hours. Alice was more talkative than usual on the drive home. Generally her and Evelyn sleep on the way home, exhausted after a busy full week at camp. But Alice seemed to need to talk. And here is her story:
Every year at camp they have a memory circle where they honor the kids who have been part of camp in the past but died during the last year. This year there were 7 kids – more than any other year Alice has attended camp. Memory circle is a chance for the counselors and kids who want to come together to share stories, memories, and thoughts about each of the children who have died. A chance to honor their lives. One of the children who died was very special to Alice. I remember her telling me about him after camp last year, and I remember Evelyn teasing Alice about how she “hung out with a boy” at camp, and how they had danced together at the dance (Alice’s first dance with a boy). Alice has a photo of him and her on her wall in her room. During memory circle, “Drool” read a letter from this boy that he had written to Drool a few months after camp. The letter spoke about what an amazing time he had at camp. It told of how he did not originally want to come – thinking camp would be “lame” and how he thought he would feel so "different" from the other kids. It was his first year at camp. This boy came to camp and gave himself the name “Silent”, but half way through the camp changed his camp name to “Dancing Wolf”. He then in his letter stated that it was the best time of his life, for he “danced with a girl for the first time, and even slow danced with her”. That girl was Alice.
That moment in time, that memory of dancing with Alice, stayed with that boy. It was a beautiful and special memory he kept with him, a young man of 13, and brought him joy. Alice told me this story as we were driving home and I pulled off the road, tears in both our eyes and held her hand. I said to her, you made a difference. You touched his life forever. Those moments were truly important. Your very presence in someone’s life made his life – though short – better. She said, yeah, maybe I haven’t survived for me, but to have helped him. It’s amazing that you can really matter like that to another person.
Maybe that’s what it’s all about. Touching other lives. As we touch their lives, share in their moments and their memories, we live on, and they live on in us. I then went on to think of all the lives that have touched mine through the years, all the lives that have shared in our journey. And then I thought of all the lives I have touched. Some of you may know that recently I returned to attending births again. After Alice’s story I thought, … all these babies, all these families that I am privileged to share in their most sacred and special time … the birth of their child - I am part of those memories. How important it is to touch each other’s lives, to share in each other’s stories. How important it was that Alice and this boy had these moments together. Moments in time which make a difference. And you never know what those moments may be. You never know when a simple word, or touch, or action may have a profound effect on another and touch their heart, remain with them to bring them strength, hope, love, courage.
We all affect each other. We all create memories and stories every day. Thank you all for sharing yourselves with me, and for being a part of my memories, and for reading these messages, reading my story.
With peace and love always,
Susan
First and most miraculous, Alice had her MRI on the 9th of August, right after we had returned from our trip to the Tetons and Yellowstone (which was amazing!!). Her 6-month follow-up MRI was great!!! Nothing growing back at her most recent operative site, no new tumors seen, and her old tumor remains shriveled and inactive. Yahoo!! Miracles do happen. She is now 6 months out and stronger than ever.
And our trip to the Tetons and Yellowstone was grand. What a beautiful and unique place in the world. We had a wonderful family vacation with everyone in good health and spirits. The girls did their usual bickering, but it was all normal, healthy family insanity and fun. Wonderful memories.
We returned from Yellowstone on Tuesday, Alice had her MRI on Wednesday and then she took off for camp UKANDU on Sunday (8/13/06) and just returned Saturday (8/19/06). Camp UKANDU is a place of miracles. It is a camp for kids with cancer and their siblings. This was the first year Evelyn could not go. It was Alice’s 6th year at camp. She has always strategically had recurrences at intervals to allow her to continue going to camp. The kids get 2 years of camp after diagnosis, but it’s extended with recurrences. I remember when Alice had her 2nd recurrence (3rd tumor), Alice and Evelyn decided the best thing about it was … 2 more years at camp. Siblings generally only get a total of 2 years, but due to Alice’s pattern of making more tumors, Evelyn has attended 5 years. She actually holds the sibling record for attending camp the most years (a most dubious honor). But this year they asked that Evelyn not attend even though Alice had just had her recurrence, as she had exceeded the usual sibling attendance years and they needed to make room for new kids. Understandable. It made Evelyn sad as camp is a very important time for both the girls, but she was very mature and understanding about it all.
So Alice went off to camp. When I picked her up she was much more solemn than usual, though stated it was the best camp year yet. Seemed odd. …
They have a closing campfire at the end of camp for the families to share it. “Drool “, the lead camp counselor’s camp name, lead the campfire ceremony and read a passage from a book that I hope to get the exact passage. But it talked about the importance of telling and sharing stories. For a story is not just about entertainment, but really about memory. Creating memory and having memories to bring us pleasure and it get us through difficult times. Drool talked about how each of these kids have amazing stories and how camp in now part of their stories. And how they can take these stories with them, through the wonderful and the difficult times. How true. This is what camp has always been about for my girls … wonderful memories that bring them strength and joy even in difficult times. Much like the "make-a-wish"
trips … creating memories, which carry us on … through good times and bad.
We took off from camp after meeting several families I had wanted to connect to from our community; families that I have only spoken to on the phone or e-mail, or have just heard about in the children’s cancer grapevine. That was wonderful for me. Then Alice and I took off for the drive home – about 2 ½ hours. Alice was more talkative than usual on the drive home. Generally her and Evelyn sleep on the way home, exhausted after a busy full week at camp. But Alice seemed to need to talk. And here is her story:
Every year at camp they have a memory circle where they honor the kids who have been part of camp in the past but died during the last year. This year there were 7 kids – more than any other year Alice has attended camp. Memory circle is a chance for the counselors and kids who want to come together to share stories, memories, and thoughts about each of the children who have died. A chance to honor their lives. One of the children who died was very special to Alice. I remember her telling me about him after camp last year, and I remember Evelyn teasing Alice about how she “hung out with a boy” at camp, and how they had danced together at the dance (Alice’s first dance with a boy). Alice has a photo of him and her on her wall in her room. During memory circle, “Drool” read a letter from this boy that he had written to Drool a few months after camp. The letter spoke about what an amazing time he had at camp. It told of how he did not originally want to come – thinking camp would be “lame” and how he thought he would feel so "different" from the other kids. It was his first year at camp. This boy came to camp and gave himself the name “Silent”, but half way through the camp changed his camp name to “Dancing Wolf”. He then in his letter stated that it was the best time of his life, for he “danced with a girl for the first time, and even slow danced with her”. That girl was Alice.
That moment in time, that memory of dancing with Alice, stayed with that boy. It was a beautiful and special memory he kept with him, a young man of 13, and brought him joy. Alice told me this story as we were driving home and I pulled off the road, tears in both our eyes and held her hand. I said to her, you made a difference. You touched his life forever. Those moments were truly important. Your very presence in someone’s life made his life – though short – better. She said, yeah, maybe I haven’t survived for me, but to have helped him. It’s amazing that you can really matter like that to another person.
Maybe that’s what it’s all about. Touching other lives. As we touch their lives, share in their moments and their memories, we live on, and they live on in us. I then went on to think of all the lives that have touched mine through the years, all the lives that have shared in our journey. And then I thought of all the lives I have touched. Some of you may know that recently I returned to attending births again. After Alice’s story I thought, … all these babies, all these families that I am privileged to share in their most sacred and special time … the birth of their child - I am part of those memories. How important it is to touch each other’s lives, to share in each other’s stories. How important it was that Alice and this boy had these moments together. Moments in time which make a difference. And you never know what those moments may be. You never know when a simple word, or touch, or action may have a profound effect on another and touch their heart, remain with them to bring them strength, hope, love, courage.
We all affect each other. We all create memories and stories every day. Thank you all for sharing yourselves with me, and for being a part of my memories, and for reading these messages, reading my story.
With peace and love always,
Susan
# posted by heinzfamily @ 9:09 AM 
