They are a strange sort of thing. Thoughts and new plans. I guess I have the belief that 2006 should be summed up and plans made for 2007. I feel a need to do the usual unkeepable resolutions and then find the list and laugh at my big plans. It seems to be part of what we do with life. We plan, we resolve, we organize and plan some more.
I don't feel that I can do that right now. I can plan some of the big things. The major events that require more than grabbing a tooth brush and going out the door. High School and two 4 legged creatures make that difficult. They require some thoughtful planning. A movie can happen on the spur of the moment. A play takes a bit more. Dinner plans are easy. I guess it is about taking a few hours here and there. Maybe that will be the resolution.
Not the Basement: One box at a time.
I will work on the list for tomorrow. Maybe that will be the resolution. Make a list of things to do. I did find a frame in the basement and I did frame a picture of one of M-E's art pieces. See I can accomplish tasks.
Saturday, December 30, 2006
Wednesday, December 27, 2006
The Big Wind Down
Lots of activity. Lots of clean up. Lots to be thankful for. Lots of great friends. Lots of great family. Lots of things to think about. Lots of dishes to put away. Lots of things to think about and do. Lots and lots and lots.
But I guess the best part is that there will be lots more Christmas Seasons. It is so easy to say that you know things will "be alright" but the real test is in having that all rightness deep in your soul. It takes that kind of belief in Santa to make it seem real. Remember back when Santa was so real. He cared and he delivered. It was a simple relationship. You were good and you were reasonable on your list. You communicated the list and you waited. No doubts. Not questions that it was going to be great and the thing you wanted or in some cases, the perfect present that you did not know you wanted but Santa could see the want deep in your heart.
You know you have to believe even when the reality of and enormity of what Santa does starts to creep in to your Psyche. Flying Reindeer are not as hard to swallow as the size of a sled, the number of houses and the time thing alone.
It is the same with Leukemia. It takes a long time to even believe that your child has it. It is so intense at the beginning. The chemo and appointments and the expected side-affects that don't come and the unexpected ones that blind side you. Telling everyone, trying to make them feel better because if they feel better maybe the making them feel better will make you believe it is okay.
The "its going to be okay" is starting to sink in. The fact is we are surrounded and aware of so many that don't have a happy ending. So many that the littlest thing goes wrong and they never are allowed back on the path. Things you only hear about and never really know exists in the world.
We have been so blessed by our family, our friends, our doctors, my work. I could never repay those that have given so much to us. I can do stuff for other's and give back when I can.
We are winding down but then gearing up for the best year of all 2007.
Tuesday, December 19, 2006
Ornament Hangers and other Christmas Issues
Where have all the ornament hangers gone? They must be hiding with all the good Christmas Cards. I am not impressed. maybe as we get older we are more interested in quality rather than quantity. I value my ornaments and they need more than 54 gage wire ( I think that is thin) in a little pack for 59 cents. Hey I would be much more inclined to spend a few bucks for hangers that won't release their charge and smash years of memories on the floor.
Oh, I have become my father...... Now there is a realization.
I am done with work sort of for the rest of the year. I am going to try and turn it off in my head. I really need some time to do some mundane things like put up more tasteless Christmas lights and get out the last of the Christmas cards.
I have a list:
1. Organize all my pins. They are in a number of boxes and should be out somehow to be seen and have a chance to be put on a Jacket.
2. Clean out and start the pond. It would be great to listen to with my new windows.
3. Wash the covered area stuff. I have a new washer, it should be useful.
4. Clean out the cool blue bowl, sort through the rocks for the good fossils and put them in a good box. They are old and need some care.
5. Get tickets for the theater for the Tap Root.
6. Relax, relax, relax.
7. Find the lost gift cards that I put somewhere.
8. Sort through a box a day and get rid of stuff.
9. Put all the pictures in one big box or several.
10. Relax, find some decent ornament hangers and Christmas cards for next year and figure out what the denomination was for 1975 Christmas stamps.
Oh, I have become my father...... Now there is a realization.
I am done with work sort of for the rest of the year. I am going to try and turn it off in my head. I really need some time to do some mundane things like put up more tasteless Christmas lights and get out the last of the Christmas cards.
I have a list:
1. Organize all my pins. They are in a number of boxes and should be out somehow to be seen and have a chance to be put on a Jacket.
2. Clean out and start the pond. It would be great to listen to with my new windows.
3. Wash the covered area stuff. I have a new washer, it should be useful.
4. Clean out the cool blue bowl, sort through the rocks for the good fossils and put them in a good box. They are old and need some care.
5. Get tickets for the theater for the Tap Root.
6. Relax, relax, relax.
7. Find the lost gift cards that I put somewhere.
8. Sort through a box a day and get rid of stuff.
9. Put all the pictures in one big box or several.
10. Relax, find some decent ornament hangers and Christmas cards for next year and figure out what the denomination was for 1975 Christmas stamps.
Thursday, December 14, 2006
Maybe it is Over....
We have just been going to school and going to work and doing homework and writing Christmas cards. The tree is purchased. The gifts are under control. Not much going on there this year. I have to make decisions about Christmas Dinner. What to serve. Lamb, Bone in Breast of Veal or wild Mallard. How to decide. Maybe we will have a real pagan feast with only meat.
I am seeing a change. I don't know if it is really there but it is a change. A bit more energy, a bit more umph. A settling into the hair coming out. I think it has slowed down. I think it heard me say, let's get curlers and a curling iron and lots of hair goop. If it is coming out lets just fry it on the way.
I have thrown, literally, thrown some lights out. Hey, at night it just looks pretty, freestyle. I think I am ready to fact clearing the table and looking at the boxes down stairs. It just feels like work. I am trying to just recover from 2.5 years of hell. I am not motivated to do the perfect Christmas because I am certain for the first time that there will be more of them to come.
I also am in a battle with my child. We might have to have separate trees from now on. I want a white tree with white angles and silver starts. She wants color and big and glitter. It must be from her father's side of the family. I want simple and clean surfaces and garland and ribbon and ............. Oh, maybe I am to blame.
Oh, time to get back to work.
I am seeing a change. I don't know if it is really there but it is a change. A bit more energy, a bit more umph. A settling into the hair coming out. I think it has slowed down. I think it heard me say, let's get curlers and a curling iron and lots of hair goop. If it is coming out lets just fry it on the way.
I have thrown, literally, thrown some lights out. Hey, at night it just looks pretty, freestyle. I think I am ready to fact clearing the table and looking at the boxes down stairs. It just feels like work. I am trying to just recover from 2.5 years of hell. I am not motivated to do the perfect Christmas because I am certain for the first time that there will be more of them to come.
I also am in a battle with my child. We might have to have separate trees from now on. I want a white tree with white angles and silver starts. She wants color and big and glitter. It must be from her father's side of the family. I want simple and clean surfaces and garland and ribbon and ............. Oh, maybe I am to blame.
Oh, time to get back to work.
Monday, December 11, 2006
Post-Chemo Depression
It is not found in any versions of the known DMIV that keeps track of those sorts of things. I think M-E has a case of it. Last night she said it did not seem like it was over. I would agree with her but then.......
She said that even though the chemo made her tired and was a constant reminder that she had cancer, she said it was a comfort zone. She knew what to expect and how she would feel. Now she is waiting to see how she is going to feel.
Because of the long use of the drugs, the recovery will not be swift. She is going to work on rebuilding her red blood cells. She has been on the low side of the supply and all of that takes time. Reds are weird creatures. They live for 120 days or so and evidently don't always get much of the bone marrow factory time. They say it will take six months for her to recover her counts. They will increase slowly over time.
I would prefer a bit bump. Maybe back to normal in a week or so. Seems reasonable. You would think that if they could kill them so fast they should have figured out a way to make them come back. Seems only fair.
She said that even though the chemo made her tired and was a constant reminder that she had cancer, she said it was a comfort zone. She knew what to expect and how she would feel. Now she is waiting to see how she is going to feel.
Because of the long use of the drugs, the recovery will not be swift. She is going to work on rebuilding her red blood cells. She has been on the low side of the supply and all of that takes time. Reds are weird creatures. They live for 120 days or so and evidently don't always get much of the bone marrow factory time. They say it will take six months for her to recover her counts. They will increase slowly over time.
I would prefer a bit bump. Maybe back to normal in a week or so. Seems reasonable. You would think that if they could kill them so fast they should have figured out a way to make them come back. Seems only fair.
Thursday, December 07, 2006
Here at Last Here at Last Here at Last
I can't believe it, I can't' believe it, I can't believe. I have to let it sink in. Too much going on to do a proper entry. Just know we are breathing......... Grateful and very relieved.
The last dose.
Tuesday, December 05, 2006
Tears and Anticipation
I think I am starting to breath. I don't really know for sure. I am just a bit edgy and ready to deal with life in general and just wanting to get on with it. For the first time in a long time I feel like we can make some plans and look into the future and have the presence of M-E as a part of that future. I am just feeling the tension and the stress leak out in positive way.
The windows were installed usterday. What a project. Hard to imagine the uproar of 5 big guys swinging sawalls and diamond blades and sledge hammers. This house is going no where.......
Sunday, December 03, 2006
We are not Alone on this Journey
the path with us. I knew we had a special bond that can only come from holding another's child while a weary mother goes for a few minutes off the floor or from answering a call from a scared mom that has suddenly realized death comes to these children no matter what the science and the power of prayer. Over the last couple of years there have been times that we have felt so so isolated. No real life, no real contacts. Sneezed, coughs, a weird rash kept people away. While we have been joined on the path by complete strangers, one group that we have quietly traveled with are the other families and children that were on
Well as we are ready to step off the treatment path other's continue and their connection is very real. This morning I read the passage below and simply cried in thanksgiving and joy. It made me realize how deeply others can touch us and their success's can renew our faith in the universe that good does happen and grace is real and very very much a part of our lives. The only thing I wish is that I had met the lama!....Oh that is right, this is not about me.
A Message from the Reinfeldts
Well as we are ready to step off the treatment path other's continue and their connection is very real. This morning I read the passage below and simply cried in thanksgiving and joy. It made me realize how deeply others can touch us and their success's can renew our faith in the universe that good does happen and grace is real and very very much a part of our lives. The only thing I wish is that I had met the lama!....Oh that is right, this is not about me.
A Message from the Reinfeldts
Elise’s counts today jumped from 0 to 183. Rejoice!! What this means is that the bone marrow donor’s cells have successfully found their way into Elise’s bone marrow and are beginning to make new cells. It will be just a matter of time before Elise’s mouth, throat, GI tract and more begin to heal. We just need those white blood cells to kick into overdrive. Docs say that to be “totally engrafted Elise must have three days in a row with counts at 500 or above. Shouldn't be too hard…with God all things are possible!
More exciting news, Elise’s bone marrow donor wrote her a brief letter and sent her an “angel” pin. It appears the donor is interested in letting us get to know her a bit. We pray that the day will come when we can meet her in person.
Also, a 70-year-old Tibetan lama made a special trip to the hospital to pray for Elise today. Aunt Mary's relationship with this man made this all possible. It was an experience our family will never forget. We are in awe of the diversity of humankind who dedicate themselves to healing our family – through prayer, kind words, acts of service and quality visits. The blessings are abundant and go a long way in sustaining us day after day.
Friday, December 01, 2006
One More Week until the END
THE END
The end of lots of things but not the end of other things. No more Oral Chemo Therapy. No more IV Chemo. No more Spinal Taps. No More Bone Marrow. No more panic about temperatures that reach 101. No more panic about Cesear Salad, no more guilt when eating sushi (she cheats sometimes,) No more fear of Blue Cheese Dressing. No more panic over other's illness. No more weeks of prednisone or Methotrexate Tuesday. No more stockpiling of odd things like Zofran and Emla Cream. No more medical waste or medical supplies in the hall way. Lots of no mores
Still monthly trips to Children's for blood draws and appointments for a year. Still trip to the operating room for some teeth fixing on the 19th of December. Still a last trip to the operating room for the port to be removed.
We are looking forward to the return of fully operating immune system, a full set of red blood cells, a complete compliment of platelets and someday a return of the reflexes. We look forward to M-E feeling better. A return of energy that comes with the right amount of red blood cells.
There will also be no more Mary-Elizabeth's Bump. It started at the beginning and should end with the ending. This covered the diagnosis and treatment and comes to a logical ending.
There will be a new beginning. At the beginning of Leukemia was were overwhelmed with information about what to expect. I have been given NOTHING about what to expect now at this point. What is the world of Post Treatment like? I guess I will be finding out. As soon as I figure our a clever name and address I will post it.
The end of lots of things but not the end of other things. No more Oral Chemo Therapy. No more IV Chemo. No more Spinal Taps. No More Bone Marrow. No more panic about temperatures that reach 101. No more panic about Cesear Salad, no more guilt when eating sushi (she cheats sometimes,) No more fear of Blue Cheese Dressing. No more panic over other's illness. No more weeks of prednisone or Methotrexate Tuesday. No more stockpiling of odd things like Zofran and Emla Cream. No more medical waste or medical supplies in the hall way. Lots of no mores
Still monthly trips to Children's for blood draws and appointments for a year. Still trip to the operating room for some teeth fixing on the 19th of December. Still a last trip to the operating room for the port to be removed.
We are looking forward to the return of fully operating immune system, a full set of red blood cells, a complete compliment of platelets and someday a return of the reflexes. We look forward to M-E feeling better. A return of energy that comes with the right amount of red blood cells.
There will also be no more Mary-Elizabeth's Bump. It started at the beginning and should end with the ending. This covered the diagnosis and treatment and comes to a logical ending.
There will be a new beginning. At the beginning of Leukemia was were overwhelmed with information about what to expect. I have been given NOTHING about what to expect now at this point. What is the world of Post Treatment like? I guess I will be finding out. As soon as I figure our a clever name and address I will post it.
Wednesday, November 29, 2006
Waiting
The snow/ice/ice/did I mention ice? is still here. We are all waiting for more snow and then back to rain. i find that I am not very productive these last couple of days. I think a deep river of anxiety is running below the surface and I am stuck just waiting to see what will happen next.
We are so close to the end. So close but it feels like The Terminator, he is never really dead. I should not think like this but it is just part of this process. Okay, I will quit whining and feed the dogs and start dinner and clean up the clutter and watch and wait for the snow.
We are so close to the end. So close but it feels like The Terminator, he is never really dead. I should not think like this but it is just part of this process. Okay, I will quit whining and feed the dogs and start dinner and clean up the clutter and watch and wait for the snow.
Tuesday, November 28, 2006
Snow Let It Snow Let it Snow
Fun was had by all. Snow, freezing wind, Sunshine. What more can you ask for on a Tuesday?
Sunday, November 26, 2006
Snow and other Quandrys
Snow is predicted and a few bits and pieces are falling. I am always amazed at how we react to snow and warning of snow. I was raised in a part of the world that snow was common. I was M-E's age and driving in the snow in a large full sized station wagon. I never had a wreck. I did slide off the road a couple of times but then there were people around that knew how to get us back on the road. They use the word snow here and everyone hunkers down for the long winter.
We have been hunkered down for a long time. The enormity of the length of our siege is catching up with me. I don't know how long it is going to take for us to not feel like every little snow flake is a return to the blizzard. Dr. Tracy told me that we would not experience a little flurry, we would have a full fledged Norw ester on steroids. So for now we will just work on enjoying a few flakes and settle in for what ever is in store for us down the road.
We have been hunkered down for a long time. The enormity of the length of our siege is catching up with me. I don't know how long it is going to take for us to not feel like every little snow flake is a return to the blizzard. Dr. Tracy told me that we would not experience a little flurry, we would have a full fledged Norw ester on steroids. So for now we will just work on enjoying a few flakes and settle in for what ever is in store for us down the road.
Friday, November 24, 2006
The dish washer is running
I have lost count of how many loads but it is well worth it. I can not count the number of turkey left overs we have had. Sandwiches seem to be the best.
We had a great time. Good food, good friends, good conversation. It was lots of fun. Thanksgiving came a perfect time for M-E since she had just completed her last dose of Prednisone. Hard to believe this was the last dose. 18 months of monthly doses. They say time does fly and if it can fly while doing leukemia treatment, then time must be very elusive.
Well time to unload the dishwasher. Happy Thanksgiving everyone. Oh, Grandma Foster would have been proud.
Thursday, November 23, 2006
Waitin For Puff Pastery and other unknowns
Turkey day. Full of unknowns. Will the turkey be juicy? Will the stuffing be good? Will the pie be as good as I remember it was last year? Will the........
We have added a new wrinkle. I have thawed, rolled, pierced and puff pastry. It is about to bake, as soon as the oven reaches 400 degrees. I am not sure what puff pastry is or if it works or how it works but I have a recipe for an asparagus and cheese tart and I am going for it. I will be adding sauteed leeks and red and yellow peppers because that seems to be what needs to be done. Oh well, Puff Pasty = our Life.
We know that M-E still sounds like she smoking 4 packs a day. Tbe great news is that her bone marrow is happy bone marrow. We all hoped her leukemia was gone, now we know it it.
New ThanksGiving Prayer:
May the puff pastry work and leukemia stay away!
We have added a new wrinkle. I have thawed, rolled, pierced and puff pastry. It is about to bake, as soon as the oven reaches 400 degrees. I am not sure what puff pastry is or if it works or how it works but I have a recipe for an asparagus and cheese tart and I am going for it. I will be adding sauteed leeks and red and yellow peppers because that seems to be what needs to be done. Oh well, Puff Pasty = our Life.
We know that M-E still sounds like she smoking 4 packs a day. Tbe great news is that her bone marrow is happy bone marrow. We all hoped her leukemia was gone, now we know it it.
New ThanksGiving Prayer:
May the puff pastry work and leukemia stay away!
Friday, November 17, 2006
Endings
December 7, 2006. It will be a very fabulous day. It will be the end of so much in some ways but I wonder if it will be the end. June 17, 2004 to December 7 2006. Lots of days, lots of worry, lots of blessings, lots of tears, lots of prayers, lots and lots and lots. I feel like I am no more ready for the end than I was at the beginning.
\
The difference is that at least we had some connection to lots of people and professionals and studies and once we found our path, we had a "Road Map".
What lays ahead is not so well defined. How do we react 0ut of the pressure cooker? Do we get the bends? When divers get the bends they put them back in the pressure cooker ( hypobaric chamber). What happens when we don't have a team and a charge nurse and a social worker.and the........ Do I remember what life was like before leukemia came in and trounced on our lives and tried to get the best of us. Do I want to return to that life? If I don't have all the pressure will I try to create it so that I will feel comfortable? I think this ending is more complicated I had first been able to consider.
Each ending brings new beginnings. I guess we will be exploring that for a while.
\
The difference is that at least we had some connection to lots of people and professionals and studies and once we found our path, we had a "Road Map".
What lays ahead is not so well defined. How do we react 0ut of the pressure cooker? Do we get the bends? When divers get the bends they put them back in the pressure cooker ( hypobaric chamber). What happens when we don't have a team and a charge nurse and a social worker.and the........ Do I remember what life was like before leukemia came in and trounced on our lives and tried to get the best of us. Do I want to return to that life? If I don't have all the pressure will I try to create it so that I will feel comfortable? I think this ending is more complicated I had first been able to consider.
Each ending brings new beginnings. I guess we will be exploring that for a while.
Thursday, November 16, 2006
Letter to Mary-Elizabeth
Over the years I have written letters to Mary-Elizabeth to be read at some point in the future. While they are hit and miss, I generally send them on her birthday and mine. Here is the one I did this year. Since she does not read the blog, I figure it is safely tucked into the envelope with the special stamp and the fun sparkels inside.
Dear Mary-Elizabeth;
53 years ago I entered this world and changed the lives of Grandma and Grampa. 14 years ago you changed my life. These were huge changes but they were wonderful changes. Never would I go back to those days of being childless. Children only make your life full of MORE
More love
More laughter
More work
More joy
More sorrow and worry
More contentment
More pride
More worry
More smiles
More messes in the kitchen
More Wonder at the important things
More chances to read great books like Good Night Moon
More kittens and puppies
More Christmas Lights
More Fancy Dinners
More Valentines
More "I love yous"
More excuses to be silly
More chances to look at the stars and moons
More chances to tell stories
More times to play CandyLand
More times to watch the ballet recitals
More chances to find cloud animals
More chances to go see the Nutcracker
More chances to eat Cotton Candy
More worry but it is worth every moment
I might be 53 but I am MORE because of you.
Dear Mary-Elizabeth;
53 years ago I entered this world and changed the lives of Grandma and Grampa. 14 years ago you changed my life. These were huge changes but they were wonderful changes. Never would I go back to those days of being childless. Children only make your life full of MORE
More love
More laughter
More work
More joy
More sorrow and worry
More contentment
More pride
More worry
More smiles
More messes in the kitchen
More Wonder at the important things
More chances to read great books like Good Night Moon
More kittens and puppies
More Christmas Lights
More Fancy Dinners
More Valentines
More "I love yous"
More excuses to be silly
More chances to look at the stars and moons
More chances to tell stories
More times to play CandyLand
More times to watch the ballet recitals
More chances to find cloud animals
More chances to go see the Nutcracker
More chances to eat Cotton Candy
More worry but it is worth every moment
I might be 53 but I am MORE because of you.
Sunday, November 12, 2006
Message from Elise.
Great friends.
We have had a very quiet day. I took Lorraine to the airport, went grocery shopping and went back to bed. I just could not get out of bed. I slept for 6 hours with the dogs. It has been a long time since I have done that. I thought I would feel like I was never going back to bed but I can not wait to return. I guess I was tired. It has been a lot time since I felt I could just collapse like that. Now the dogs are running around like crazy. Tucker is carrying around his 2 lb hand weight. Go figure. He loves it until it drops on his paw.
Below is a message from Elise. I love these children with cancer. They are in the middle of cancer treatment and they are able to look outside themselves and see others in need.
Elise is scheduled to receive a transplant next week. She is at the beginning of a long wait. Once she has her transplant they will be in the hospital for about a month and the first 100 days are very important to see if the transplant takes.
I guess the moral of the story is that all of us need prayer and respite from our lives. That is why we have each other.
- ELise here Hey guys I know a getting lotsa prayers 'cause they are working, slowly but surely.Well at first I was nervous about radition becasue you hhave to stand VERY still for 3 minutes per beam or 9 minutes on the front, nine on back and as most of you know that could be VERY diffucult!:) but it wasn't horrible 'cause I brought some music. now I can do 9 minutes without taking a break!!!!! It doesn't hurt at all, the only thing is a loud buzzing noise. BBBBBUUUUUZZZZZZ anyway my next (and last, yipieee) treatment of radiation is a 2 today. Also I was wondering if you could pray for my friend Fanny, she has AML amd is not doing well. She is haveing trouble breathing if her (bp) blood pressure drops at all she will be moved to the ICU(intensive care unit). I really would appreatiate it if you prayed for Fanny so she can run and laugh and hang out with friends. She is an amazing 10 yr old and heeps my spirits up when I 'm sad!!! Please pray for Fanny! B4N (bye for now) EC
Friday, November 10, 2006
Half Way Through Radiation.( Someone else and not M-E)
Pale, washed out, tired colors. I guess I chose this shade because of my thoughts tonight. Elise R. is 50% through with her total body radiation(TBR). She is 11 and for 9 minutes, she must stand by herself in a room with a huge door closed to receive high dose radiation. She has handle bars to steady herself and something to lean against. It is not a fun experience. Each dose makes her more tired. Two times a day. She has had 4 doses. Compared to Mary-Elizabeth, Elise is being run over by a freight train twice a day.
This is the part that is so hard. There is nothing that anyone can do to make it go away. Then only thing that can be done is to try and make it easier. So my plan for the day is to think some extra thoughts about good things. Light a few candles and say extra prayers about everything.
I think I have had a constant conversation going in my head for a while now. I am still in child mode. Part of me thinks I need to let God know what would work for me. My Santa list. World peace, health for M-E. Less Rain, More Rain. More time in the day, more sleep, quiet dogs, good neighbors, cooperative clients, you get the picture. I have learned over the last couple of years more productive conversations revolve around understanding and wisdom and acceptance. Maybe the real discussion should revolve around trust. Trust in good results, trust in acceptance of bad results. Trust that what ever happens will be handled.
I have candles lit but I think I have to make my own coffee, It could be worse, there could be no coffee..
This is the part that is so hard. There is nothing that anyone can do to make it go away. Then only thing that can be done is to try and make it easier. So my plan for the day is to think some extra thoughts about good things. Light a few candles and say extra prayers about everything.
I think I have had a constant conversation going in my head for a while now. I am still in child mode. Part of me thinks I need to let God know what would work for me. My Santa list. World peace, health for M-E. Less Rain, More Rain. More time in the day, more sleep, quiet dogs, good neighbors, cooperative clients, you get the picture. I have learned over the last couple of years more productive conversations revolve around understanding and wisdom and acceptance. Maybe the real discussion should revolve around trust. Trust in good results, trust in acceptance of bad results. Trust that what ever happens will be handled.
I have candles lit but I think I have to make my own coffee, It could be worse, there could be no coffee..
Tuesday, November 07, 2006
Waiting for Godot
When I was in college I went to see Waiting for Godot. I remember the play and even where we sat. The endless waiting and talk about waiting and the hope that the waiting was about to be over, the talk about the waiting being over. I think ALL parents are in the play: we just don't know it.
We are lucky enough to have more to our life than just sitting and waiting so we are busy while we wait but we are endlessly waiting. We wait for test results, we wait for doctors, we wait for counts, we wait for the next round to start, we wait for the good news while preparing for the bad news. We wait and wait and ............
I have come to realize that there is a gift in the waiting. Waiting gives us a moment to stop and reflect and to pause. A moment to catch our breath, connect with others and to prepare for the rest of the journey.
I was always ready to rush through treatment, get to the other side, to JUST get it over with. I figured that the sooner we were done, the sooner we could get on with our 'REAL LIVES'. It took me a long time to realize that this, at this moment, at this second, at this next medical challenge, was our real life. It was full of challenges and heartache and pain as I watched my daughter silently take the next dose and the next indignity. It was the time in the waiting room when I could chat with a confused and scared new mom and let her know that it would be all right. It was the hours in the ER when I realized that we were lucky to have ALL and not some really scary thing like a child with a drug addiction. Once I settled in and realized that this was our real life, it was better. Not great, but better.
What has really helped is know that no matter how long it took, or how long we had to wait, there were people along our path to join in the vigil.
.
We are lucky enough to have more to our life than just sitting and waiting so we are busy while we wait but we are endlessly waiting. We wait for test results, we wait for doctors, we wait for counts, we wait for the next round to start, we wait for the good news while preparing for the bad news. We wait and wait and ............
I have come to realize that there is a gift in the waiting. Waiting gives us a moment to stop and reflect and to pause. A moment to catch our breath, connect with others and to prepare for the rest of the journey.
I was always ready to rush through treatment, get to the other side, to JUST get it over with. I figured that the sooner we were done, the sooner we could get on with our 'REAL LIVES'. It took me a long time to realize that this, at this moment, at this second, at this next medical challenge, was our real life. It was full of challenges and heartache and pain as I watched my daughter silently take the next dose and the next indignity. It was the time in the waiting room when I could chat with a confused and scared new mom and let her know that it would be all right. It was the hours in the ER when I realized that we were lucky to have ALL and not some really scary thing like a child with a drug addiction. Once I settled in and realized that this was our real life, it was better. Not great, but better.
What has really helped is know that no matter how long it took, or how long we had to wait, there were people along our path to join in the vigil.
We are waiting for the end of M-E's treatment. We are waiting for the beginning of Elise's transplant. We are waiting for ..................... Thanks for joining our journey.
.
Saturday, November 04, 2006
It is a candle day
Cold and rainy and I should be making stew. Really flavorful, good deep think stew. I have the meat out. I have to find the turnips and rutabagas.
Here are some pictures from Halloween. A great time was had by all.
Tuesday, October 31, 2006
Meet the Twins: Hope and Fear
We all hope that everything will be alright. We all pray that there will be good results for hard things in our lives. We all trust that things will turn out all right but then we also are realistic enough to know that on the flip side of alright is not good.
HOPE is what everyone encourages and we all strive for in the end. Hope is a gift, one that allows us to move through each day and face each new challenge and disappointment, we just keep hoping. It seems to endless and boundless but so is it's twin FEAR.
I guess it sort of makes sense that we don't even need Hope if Fear was not around to make us wary. Wary of the future, question our past and uncertain of the present. Fear drives us to take those next steps, Hope gives us the ability to do so.
We have traveled this journey of "treatment" for her leukemia because of our fear of the alternative. Hope has been our mainstay. We have all tried to hang on it it knowing that sometimes hope, good thoughts, faith, candles, pilgrimages, a corner of Marys, healing ceremonys, time and all other good things in the universe aren't enough. That is when we turn away from our fears and hope again for the best and right answer.
HOPE is what everyone encourages and we all strive for in the end. Hope is a gift, one that allows us to move through each day and face each new challenge and disappointment, we just keep hoping. It seems to endless and boundless but so is it's twin FEAR.
I guess it sort of makes sense that we don't even need Hope if Fear was not around to make us wary. Wary of the future, question our past and uncertain of the present. Fear drives us to take those next steps, Hope gives us the ability to do so.
We have traveled this journey of "treatment" for her leukemia because of our fear of the alternative. Hope has been our mainstay. We have all tried to hang on it it knowing that sometimes hope, good thoughts, faith, candles, pilgrimages, a corner of Marys, healing ceremonys, time and all other good things in the universe aren't enough. That is when we turn away from our fears and hope again for the best and right answer.
Sunday, October 29, 2006
Pumpkins
We have done our duty, sacrificed perfectly innocent pumpkins and formed them into shapes that are humiliating but cute. Candy is hiding in the car because I have no ability to use it for it's designed purpose. We are ready for Halloween.
Saturday, October 28, 2006
Dark Mornings but bright Afternoons
It has been very dark and icky and cold and foggy but then the sun comes through. Waiting for the bright makes the cold and icky tolerable.
We are in some fog right now. Waiting for this to be over. I have been told that when we are done I will be a nervous wreck. I will be anxious and worried and not able to concentrate. I will be sure that every sneeze is a signal.
I wonder what I have been doing for the last two and a half years. Oh, well. We shall see what all of that turns out. I don't know why we would be more worried given that we will still be going to the clinic every month. Sort of like it is now.
World of wisdom from Mary Lanham. One of my family members was complaining to my mom. She asked if they could see the end of the tunnel and they whined no. My mom told them to "Quit looking"
I guess that says it all.
Tuesday, October 24, 2006
Well When it Rains is Pours
I could not think of a better title for today. Buckets are being dumped all over Seattle. Yes, we are surprized each and every time it rains here. We are really shocked when it pour and is dark and the storm sewers fill up and the streets flood and the cars slide and the fog rolls in and the crashes begin. People always say, "Well it is Seattle, What do you Expect?" And those of us here always agree and then continue to be amazed.
That is sort of where I am today. Amazed, Shocked and not very prepared. M-E has been sick since last Wednesday. Sore throat, head ache, body ache and then cough and nose running and more aches. It should be old hat by now. Some child went to school and spewed germs into the air and my daughter was in the way. She was able to fight it off mostly but then since she carries around less than half a normal white blood count she could only fight so long.
So day 7. She is home, I am at work, I can only be gone so long and she is freaked. She has missed so much school she is feeling overwhelmed.
I guess the conversation should go like this: "Well, she does have Leukemia!, What do you expect?".
I guess "expect" is not the right word. Hope is a better word. I hope we can make it through the next 2 months. I hope she can get caught up with school. I hope she does not fall so deep into a funk that she can come out of it. I hope we can get back to the place that flu lasts a couple of days and colds only bother her for a few days.
Maybe in Seattle we hope for sunshine.
That is sort of where I am today. Amazed, Shocked and not very prepared. M-E has been sick since last Wednesday. Sore throat, head ache, body ache and then cough and nose running and more aches. It should be old hat by now. Some child went to school and spewed germs into the air and my daughter was in the way. She was able to fight it off mostly but then since she carries around less than half a normal white blood count she could only fight so long.
So day 7. She is home, I am at work, I can only be gone so long and she is freaked. She has missed so much school she is feeling overwhelmed.
I guess the conversation should go like this: "Well, she does have Leukemia!, What do you expect?".
I guess "expect" is not the right word. Hope is a better word. I hope we can make it through the next 2 months. I hope she can get caught up with school. I hope she does not fall so deep into a funk that she can come out of it. I hope we can get back to the place that flu lasts a couple of days and colds only bother her for a few days.
Maybe in Seattle we hope for sunshine.
Tuesday, October 17, 2006
Tuesday the 17th
This picture was on my computer and it some how ended up here. This is Henry and Mary-Elizabeth when he was just an itty bitty pup.This day has no real significance. It is just a day. One that started out a bit slow but will pick up soon. It is a day of quiet contemplation. The world is a bit dark in Seattle. The clouds are close. When they are so dense, the sound does not escape. Even on the 36th floor there is a fair amount of street noise. Buses, cars honking, construction cranes, fire and police. It is often startling at how noisy things can be.
Things are noisy in my head right now. I am secretly counting the doses of pills I have to count out and the appointments we have left. I am planning what to do on that last day of treatment. Do I take cupcakes to the school? Do I organize a special family event? Do we take Dr. Tracy and Nurse Brundige to Pallisaides? Just how do I make the occasion? We are having a huge sushi party later.
The happy, ending noise is cluttered with the noise from the world of Elise R and her upcoming transplant. I spoke with her mom yesterday. She has that sound, that , "oh, my God, this is real," sound in her voice. It just makes me want to go crawl in her skin and help anyway that I can. To be supportive and helpful and to take away some of the fear and the pain and the uncertainty. Susan is the type of person that is worried that our connection to her is causing us stress. I understand her worry in a way that only a few people can. It is the "I have been there" sort of understanding.
Empathy is a great thing, empathy with life experience is a home run.
We have learned many lessons during our battle with Leukemia. I had to learn to begracious and to receive. It is easy to give and it might be better if you trust all those that say "it is better to give than receive". But then to receive takes you through a whole lot of emotions and internal conflicts.
Isn't there someone else that needs it more?
How will I repay this kindness?
This situation must be very very bad?
Do I really deserve this?
Then I finally realized that I should just go with the flow. This was the time I really needed help and needed to let it happen. A lot of this process was about letting things just happen.
There is so much in our lives we have no control. No matter how much planning, no matter how much education, no matter where you live, no matter what political party you join, no matter how organic the food is that you eat, there are no guarantees in any part of our lives.
We can only count on change and upheaval and chaos and the kindness of others.
Monday, October 16, 2006
Message to a Friend.
Today Elise goes to the Fred Hutchinson the "Hutch" to begin the evaluation for a transplant. She is the child that was diagnosed with ALL in July of this year. While she has ALL she also has a brand that is laughing at Chemo Therapy. She has skipped 2.5 years of treatment and gone straight to transplant.
Transplant world is another universe. It is full of lots and lots of tests and appointments a the Hutch. Then if all goes well and there is no evidence of cancer in her system, she does a few days of total body radiation. When every part of her bone marrow is dead she gets new batch and then waits. There are a magic 100 days.
Her mom was anxious the other day and I sent her the following e-mail. As I wrote it, I realized how hard this has been. Sometimes I look back and wonder how we made it to the end of this deep dark tunnel.
Message to Susan R.
I have been working on getting my blog in some sort of order, in notebooks and ready for a serious read through and edit. I have been re-reading the entries from two years ago and find that I did much more screaming. Pleading was my thought but just being angry at God was a part of it. I found little solace in any of the screaming but loved that God let me do it and would not think less of me. I complained a lot to Mary. I was not raised Catholic but I love that there are lots of saints that seem to have different jobs. I am sure there is an organizational chart somewhere.
This whole process is so hard on so many levels. So much pain our children have to endure. The disappointments are deep and lasting and ones we never want them to even know about. There is no way that they will not carry scars away from this process. Physical and emotional. It is just how it is and so hard to accept. Mary-Elizabeth has the kind of skin that creates big scars. She has hugh striation of her skin from the rapid weight loss and gain from the steroids. Her port scar will fade at some point but will be there all her life. She has 6 dot tattoos that will be with her. I asked about removal but they said they were a message to her future doctors and needed to stay. Future Doctors. Is that a good statement or a bad one. Do we want them to have to see doctors all their life or should there be solace that they will see them in their future.
It has taken me a long time to process all of this. All the vast changes and detours that Leukemia brings for everyone. There are no magic words, it is sort of like giving birth. A process and no way to short circuit the system, 9 months are required. The difference is that we have a much better idea about the outcome.
Our children know that we have expectations that involve them. They know that they receive lots of good cu dos for doing well in sports and school and being great people. It becomes a part of who they are and how they see themselves. The adopt our expectations and make them there own. Many of them are sort of warped in the process. I was running around making an elaborate costume for M-E when she was little. It had feathers and jewels and lace and......... (over the top). I was upset that it was not coming out right. My very wise mom asked me what I was doing and why and I told her I was being a good mom and making a special costume for Mary-Elizabeth. Mom sort of laughed and asked if I remembered her ever doing more than cutting a couple of holes in a sheets and announcing that I was a ghost. I had to laugh.
I have thought a lot about those expectations during the last couple of years. M-E played basket ball and Volley Ball she was signed up for crew. She was a leader in school projects and chosen to do lots of special things. She received straight A's. It was so so hard to have times during treatment when the days activities was a trip from the bed to the shower to the couch to the bed. I have to fight all the time to not push more. The bikes are in the garage. Greenlake can be a short walk. Movies can be rented on DVDs. Books can be listened to on tape when the brain is recovering from radiation. The affects of Vincristine wear off. The body does come back. Now no one can say how or to what extent.
Adaptable, they are adaptable. I wish I could be more so but then what I have learned is that people look at you and me and all the other mothers and are amazed at what we have done, what we have to do and how we are still able to face most days. The need to have maintain strength for our families and our children and ourselves does work. One small step at a time. One small miracle at a time. It is so hard and so discouraging.
Ms. Susan your daughter will make it through all of this. Jared will be a better person for having this experience. You and Michael will never take a moment for granted.
Well I have to go and pretend to be a lawyer. It is Friday the 13th and M-E is home. This is her most hated day. She was diagnosed 26 months ago. I can so remember being at month 2 and 3 and wondering how we were going to make it through. But we keep at it. I don't know when it will feel like we are through.
Good luck at the Hutch.
Transplant world is another universe. It is full of lots and lots of tests and appointments a the Hutch. Then if all goes well and there is no evidence of cancer in her system, she does a few days of total body radiation. When every part of her bone marrow is dead she gets new batch and then waits. There are a magic 100 days.
Her mom was anxious the other day and I sent her the following e-mail. As I wrote it, I realized how hard this has been. Sometimes I look back and wonder how we made it to the end of this deep dark tunnel.
Message to Susan R.
I have been working on getting my blog in some sort of order, in notebooks and ready for a serious read through and edit. I have been re-reading the entries from two years ago and find that I did much more screaming. Pleading was my thought but just being angry at God was a part of it. I found little solace in any of the screaming but loved that God let me do it and would not think less of me. I complained a lot to Mary. I was not raised Catholic but I love that there are lots of saints that seem to have different jobs. I am sure there is an organizational chart somewhere.
This whole process is so hard on so many levels. So much pain our children have to endure. The disappointments are deep and lasting and ones we never want them to even know about. There is no way that they will not carry scars away from this process. Physical and emotional. It is just how it is and so hard to accept. Mary-Elizabeth has the kind of skin that creates big scars. She has hugh striation of her skin from the rapid weight loss and gain from the steroids. Her port scar will fade at some point but will be there all her life. She has 6 dot tattoos that will be with her. I asked about removal but they said they were a message to her future doctors and needed to stay. Future Doctors. Is that a good statement or a bad one. Do we want them to have to see doctors all their life or should there be solace that they will see them in their future.
It has taken me a long time to process all of this. All the vast changes and detours that Leukemia brings for everyone. There are no magic words, it is sort of like giving birth. A process and no way to short circuit the system, 9 months are required. The difference is that we have a much better idea about the outcome.
Our children know that we have expectations that involve them. They know that they receive lots of good cu dos for doing well in sports and school and being great people. It becomes a part of who they are and how they see themselves. The adopt our expectations and make them there own. Many of them are sort of warped in the process. I was running around making an elaborate costume for M-E when she was little. It had feathers and jewels and lace and......... (over the top). I was upset that it was not coming out right. My very wise mom asked me what I was doing and why and I told her I was being a good mom and making a special costume for Mary-Elizabeth. Mom sort of laughed and asked if I remembered her ever doing more than cutting a couple of holes in a sheets and announcing that I was a ghost. I had to laugh.
I have thought a lot about those expectations during the last couple of years. M-E played basket ball and Volley Ball she was signed up for crew. She was a leader in school projects and chosen to do lots of special things. She received straight A's. It was so so hard to have times during treatment when the days activities was a trip from the bed to the shower to the couch to the bed. I have to fight all the time to not push more. The bikes are in the garage. Greenlake can be a short walk. Movies can be rented on DVDs. Books can be listened to on tape when the brain is recovering from radiation. The affects of Vincristine wear off. The body does come back. Now no one can say how or to what extent.
Adaptable, they are adaptable. I wish I could be more so but then what I have learned is that people look at you and me and all the other mothers and are amazed at what we have done, what we have to do and how we are still able to face most days. The need to have maintain strength for our families and our children and ourselves does work. One small step at a time. One small miracle at a time. It is so hard and so discouraging.
Ms. Susan your daughter will make it through all of this. Jared will be a better person for having this experience. You and Michael will never take a moment for granted.
Well I have to go and pretend to be a lawyer. It is Friday the 13th and M-E is home. This is her most hated day. She was diagnosed 26 months ago. I can so remember being at month 2 and 3 and wondering how we were going to make it through. But we keep at it. I don't know when it will feel like we are through.
Good luck at the Hutch.
Saturday, October 14, 2006
Before and Afters
See, it takes time to arrive a the final result. Time and patience. I still have not learned patience. Someday, if I am patient and learn more common sense.
Last night Idid something so stupid. I told M-E that I was not going to put up with "the hair in her eyes" much longer.
Oh, my god. The wrath and tears and the........ it was ugly. I was read the riot act about how she had to be different from everyone else for two years and now she could be like they were..... fill in the blanks. Then the tears and the sadness and the realization by the mother that all that time she was so "okay" without hair was just not the truth.
This child had depths that keep surprizing me. Sort of like my walls. I guess sometimes we have to open them up, examine them and then fix them again.
Now, how do we fix me. What Mother can keep her mouth shut about hair?????
Thursday, October 12, 2006
Each Day a Step Closer
A bit of the back splash. We started painting tiles in June of 2004. I guess it is appropriate that they are going up now.
Sunday, October 08, 2006
The Good Things in LIFE are very very Messy
I have not even counted yet. I know the following. We have no more jelly jars left, some of the rings were stolen from already sealed jars, we went through almost 40 pounds of sugar. You can buy organic 100% lemon juice. All the batches were made with grape and black berry juice but one. We still have juice canned for next year. I won't let anyone know what they are getting for Christmas.
Life is so so messy but the best things come from those messes when you let the chaos reign.
Thursday, October 05, 2006
A View From A Very Different Place.
I took a reluctant and sleepy child to Children's for the day yesterday. She had to do a Neuro Psyche evaluation. They are trying to figure out, what, if anything was done to her brain during this process.
Go figure, radiation and chemo into your brain does not always create the best result for learning ability. I wonder why that would be? Anyway this is the second. There will be another one in about 18 months.
I must not have gone on the first one. I do not recall spending endless hours in the waiting room. Don't be mistaken, this is a great place to wait. It is in the new wing and all the walls are such a soothing color of hospital white, not quite white with lots of colored fish.
I was struck by the difference in the two waiting rooms. At Hem/Onc the kids are bald, and sick and carry around feeding tubes. They are generally quiet. The parents are accommodating and worried. There are some upset parents but generally children are treated with care and concern. As we all sit there we all know that we are fighting a mighty battle. Our tools are few but we use them with gusto. There is a lot of sharing between parents. Parents have spent time with each other in the waiting area, on the floor and in the cafeteria. There is sense of belonging, a sense that we have to support each other because no one else can understand what we go through.
Parents come into the psych waiting room and they are very much alone. The child looks normal but you know that they would not be sitting and waiting if there was not a problem. Not in the middle of the day. They seem lost, don't talk with each other and have that " This is overwhelming" aire about them. Lots of short tempers and lots of child "management".. Joel was there yesterday. He came in and went straight to the video game machine. He looked at his selection, hooked it up and then began to play. His father stopped him and asked that he look at him. Then the dad said,
Now, Joel , Dr. X will be out soon. When he comes out and it is time to go in to see him I don't want to hear from you: Let me finish, I am almost done, I want to get to this last place, just a minute, Can I have 5 more minutes." Joel agreed. Father was happy and then Dr. X came out. Joel was told it was time to stop and he said: May I have more time Please." The father had that look on his face. The, "I can not win, no matter what I do or what I say"look. Joel had not violated his terms of play. Now this is a child that would make a great lawyer.
Shame, I felt shame in the room as the parents trapesed by with surly children. If felt frustration as they tried to cope. I felt a certain amount of despair.
We all have children in trouble in one way or another. No one is there because it is a fun place to hang out.
I think Hem/Onc is running on Hope. Hope for a cure, hope for no sideaffects, hope for a good future for the kids. We live with uncertainty but it is an uncertainty that can keep be measured and test and counted in some way. In the Psyc department there are no real measures, not way to tell if things are better or how they will progress. The Mind is such a strange part of our body.
I am glad I spend more time in Hem/Onc than Psyc. Who ever thought that would be the case.
Go figure, radiation and chemo into your brain does not always create the best result for learning ability. I wonder why that would be? Anyway this is the second. There will be another one in about 18 months.
I must not have gone on the first one. I do not recall spending endless hours in the waiting room. Don't be mistaken, this is a great place to wait. It is in the new wing and all the walls are such a soothing color of hospital white, not quite white with lots of colored fish.
I was struck by the difference in the two waiting rooms. At Hem/Onc the kids are bald, and sick and carry around feeding tubes. They are generally quiet. The parents are accommodating and worried. There are some upset parents but generally children are treated with care and concern. As we all sit there we all know that we are fighting a mighty battle. Our tools are few but we use them with gusto. There is a lot of sharing between parents. Parents have spent time with each other in the waiting area, on the floor and in the cafeteria. There is sense of belonging, a sense that we have to support each other because no one else can understand what we go through.
Parents come into the psych waiting room and they are very much alone. The child looks normal but you know that they would not be sitting and waiting if there was not a problem. Not in the middle of the day. They seem lost, don't talk with each other and have that " This is overwhelming" aire about them. Lots of short tempers and lots of child "management".. Joel was there yesterday. He came in and went straight to the video game machine. He looked at his selection, hooked it up and then began to play. His father stopped him and asked that he look at him. Then the dad said,
Now, Joel , Dr. X will be out soon. When he comes out and it is time to go in to see him I don't want to hear from you: Let me finish, I am almost done, I want to get to this last place, just a minute, Can I have 5 more minutes." Joel agreed. Father was happy and then Dr. X came out. Joel was told it was time to stop and he said: May I have more time Please." The father had that look on his face. The, "I can not win, no matter what I do or what I say"look. Joel had not violated his terms of play. Now this is a child that would make a great lawyer.
Shame, I felt shame in the room as the parents trapesed by with surly children. If felt frustration as they tried to cope. I felt a certain amount of despair.
We all have children in trouble in one way or another. No one is there because it is a fun place to hang out.
I think Hem/Onc is running on Hope. Hope for a cure, hope for no sideaffects, hope for a good future for the kids. We live with uncertainty but it is an uncertainty that can keep be measured and test and counted in some way. In the Psyc department there are no real measures, not way to tell if things are better or how they will progress. The Mind is such a strange part of our body.
I am glad I spend more time in Hem/Onc than Psyc. Who ever thought that would be the case.
Sunday, October 01, 2006
Wise Words
"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald
I love the thought. She is so right. We have received a million cups of tea. We have served a half million more.
We are so so close. We received our last calendar. This should all be over by December 22. She has her last spinal tap with a bone marrow biopsy at the end of November. If everything is clean, she finishes her last oral chemo on December 7th. Then one more surgery to remove the port. We begged to keep the port but they would not let her. Something about infection risk. They are so worried about that sort of thing. Go figure.
I had a long talk with someone about relapse. I guess I am hoping I can really hear about it now. So here is the scoop. If children relapse during treatment the tumor is usually a close relative of the original almost a clone. It sort of goes away, feeds on the chemo and comes back with a vengeance. It is not pretty. Transplant, 30% quality of life discussions, a place that tea would be a constant companion.
If the child relapses post-treatment, it is a completely new kind of cancer and you start again. This stuff is tricky. It is smart, it is evil. It flys under the radar and does lots of damage before you even know.
We are focusing on the:
If you make it through treatment and don't relapse you chance of getting it again is like that of any other person. I am going for lightning not striking again.
I will be needing lots of tea for the next few months and then maybe a stiff shot after that.
I love the thought. She is so right. We have received a million cups of tea. We have served a half million more.
We are so so close. We received our last calendar. This should all be over by December 22. She has her last spinal tap with a bone marrow biopsy at the end of November. If everything is clean, she finishes her last oral chemo on December 7th. Then one more surgery to remove the port. We begged to keep the port but they would not let her. Something about infection risk. They are so worried about that sort of thing. Go figure.
I had a long talk with someone about relapse. I guess I am hoping I can really hear about it now. So here is the scoop. If children relapse during treatment the tumor is usually a close relative of the original almost a clone. It sort of goes away, feeds on the chemo and comes back with a vengeance. It is not pretty. Transplant, 30% quality of life discussions, a place that tea would be a constant companion.
If the child relapses post-treatment, it is a completely new kind of cancer and you start again. This stuff is tricky. It is smart, it is evil. It flys under the radar and does lots of damage before you even know.
We are focusing on the:
If you make it through treatment and don't relapse you chance of getting it again is like that of any other person. I am going for lightning not striking again.
I will be needing lots of tea for the next few months and then maybe a stiff shot after that.
New Floor for the Kitchen.
Here is the new floor. Some say I need solid colored rugs. Most might think I need a new sense of color and taste. I just love my floor. So did the floor guy. He came here first and then went to pick up his stuff. The guys in the store were concerned someone had written down the wrong numbers. Silly boys.
Saturday, September 30, 2006
I Have Been to The World of "You don't have to make a choice, you can have it all."
But not in a bad way. You don't have to choose anything when you are on a cruise. If you want Venison and Crab and Lamb, you order it all. No reason to deny yourself anything. I even had extra brussel sprouts because I love them.
I am back. I have almost no pictures but I had a great time. Margaret and Mary-Jane and I left for Vancouver on Saturday. We drove up and stopped to see Simon. Of course we took him to lunch. One must always feed the college students. I ran into my cousin Jean.
We entered Canada and found all the special places that we wanted to shop. What a great place! We went to a place Margaret loves called Noddys Bon Tons. We had tea and had our cards read by a little old white haired Scottish guy. I totally agreed with everything he said about Margaret and Mary-Jane. Mine of course was only partly right. Good stuff right, bad stuff wrong. He said I was bossy and controlling. See, not right.
We had a good Italian dinner and then entered the cruise ship. I made spa appointments and we started to relax. What a way to live. Only decision, where shall we hang out and relax next? We meet some great people, the guy that developed Alpental, sold it and moved to Sun Valley. A guy that was from Florida, DEA, FBI, and once we decided politics would not be our dinner conversation, we did great. Lydia, the little 81 year old Scottish lady. She had been a florist and did Margaret Trudeu's wedding. She loved when we asked for her shortbread recipe. (Guess what everyone gets for Christmas).
Lots of sleep, lots of rest, some book reading, some show watching, movie watching and just watching the ocean go by.
Great trip, thanks for all everyone did to make sure I had a good rest. I would go again.
Wednesday, September 20, 2006
The Right Direction
My "leaving town by myself " management skills are not the greatest. I am just a bit rusty. I guess I really have not left for a very long time. Margaret and I are supposed to be going on a cruise. Yes, I am getting on a large floating hotel and going to the Midnight Buffet. I will in fact have to set my alarm to get up. I have not been up at midnight for a very long time.
Okay so it is a bit weird, we are traveling via Mary-Jane MiniVan to Vancouver BC. Boarding the ship and traveling to Seattle. We have a day of excursion in Seattle ( I am going to Children's for a bad chemo day and Margaret is going to work) We get back on the boat and head to LA. No other stops.
They are moving the ships that have been traveling to Alaska down south to do the Mexico trips. It was dirt cheap and I am so ready for a couple of days of floating.
Plans for the Cruise:
I am going to read, spend time in the spa, hair, nails, massage and then read some more. I am going to watch movies and people. I am going to try and relax. I left once, in August of 2005 for three days and M-E ended up with hives and our trip to Venice was postponed and........ I am hoping this goes better.
Tucker is going to Camp Lucky Dog. He is such a handful and I figure that if he has a million dogs to chase around with he will be very happy. M-E and Sadie are spending a night with Vickie. She was gracious enough to say yes. Lori is coming to Seattle on Sunday and leaving on Wednesday. The other parents are doing the carpool for Holy Names. Lori will be picking up. Johnny is taking care of M-E and Sadie on Wednesday night.
I think it is handled. I hope it goes well, I suggested I not leave until Sunday on the train and M-E suggested in the most stern way that I needed to get out of town.
So......... Click on the link above and you shall see where I will be.
Okay so it is a bit weird, we are traveling via Mary-Jane MiniVan to Vancouver BC. Boarding the ship and traveling to Seattle. We have a day of excursion in Seattle ( I am going to Children's for a bad chemo day and Margaret is going to work) We get back on the boat and head to LA. No other stops.
They are moving the ships that have been traveling to Alaska down south to do the Mexico trips. It was dirt cheap and I am so ready for a couple of days of floating.
Plans for the Cruise:
I am going to read, spend time in the spa, hair, nails, massage and then read some more. I am going to watch movies and people. I am going to try and relax. I left once, in August of 2005 for three days and M-E ended up with hives and our trip to Venice was postponed and........ I am hoping this goes better.
Tucker is going to Camp Lucky Dog. He is such a handful and I figure that if he has a million dogs to chase around with he will be very happy. M-E and Sadie are spending a night with Vickie. She was gracious enough to say yes. Lori is coming to Seattle on Sunday and leaving on Wednesday. The other parents are doing the carpool for Holy Names. Lori will be picking up. Johnny is taking care of M-E and Sadie on Wednesday night.
I think it is handled. I hope it goes well, I suggested I not leave until Sunday on the train and M-E suggested in the most stern way that I needed to get out of town.
So......... Click on the link above and you shall see where I will be.
Sunday, September 17, 2006
Light the Night
We went to Greenlake last night to watch this event. It is put on by Leukemia Lymphoma Society. I have wanted to partcipate for a couple of years but September has never been a good month for us. I have also had a fair amount of resitance from M-E. She does not feel like a survivor. Dr. Tracy said that Lance Armstrong says that you are a survivor from the day your receive your diagnosis but cause each day your are surviving.
During the walk everyone is given a balloon. Red ones are for those touched by cancer, supports and the like. White balloons are for those who have survived. Lets put it this way, way way to many people have been touched by cancer and there are not enough survivors. It really bumbed me out not to see more than a couple dozen white balloons and hundreds of red balloons.
I have a couple of theory's about that. One being that by the time you get to survival you are just exhausted. It is hard to ask anyone to support anything because they have given so much. That being said you are all required to participate in a walk around Greenlake a year from now. I am going to enlist Holy Names and Odea and St. Joseph's to come out and support one of their own. I know there are more survivors out there and it is time they show up to their party.
It was beautiful to see so many people with lit up balloons on a walk around a dark lake. It is very appropriate given that cancer is like a dark lake with light around the edges.
Wednesday, September 13, 2006
REMISSION DAY
PURPLE.....Must be the color of remission. I don't know why is should not be. It steeped in tradition and valued by the royals world wide, including the Pope. It must have the highest significance and should be today's color.
Remission: a word we in the cancer world cling to like drowning passengers of the Titanic. Remission in Leukemia World can be a fleeting thing or an elusive thing. Some kids go into REMISSION within 7 days of treatment beginning. Then there are those with cancer that is more stubborn. M-E had the stubborn kind and did not make it until September 13, 2004. We never went through the process hoping for day 7 remission, only to be told it had not occurred and were facing 6 months of additional treatment. We were always on the "everything and more" plan. I have seen the faces of the parents that did not have a child in remission by 7 days. It is a sad sad thing.
While M-E had the stubborn kind of Leukemia, she did not have the totally disrespectful nan-nan-nan kind. Some Leukemia just laughs at chemo therapy and thinks that the refusal to go away will let it stay. Well those doctors at Children's Hospital are not stupid. They have really big bags of drugs and they are not afraid to use them. Eventually Remission is achieved and then the bone marrow just has to be replaced. It does not behave and it is just flushed out of the body and new and kinder and better bone marrow gets to set up residence. ( Say an extra prayer for Elise.)
Two years, two years, two years. I can not believe it has been two years. Mary-Elizabeth woke up to a small box in the mouth of Tucker. Small turtles were held within. They are very special turtles. They had been waiting at the jewelry story for the last two years. I figured they must have been waiting for her to arrive at this point.
.
Remission: a word we in the cancer world cling to like drowning passengers of the Titanic. Remission in Leukemia World can be a fleeting thing or an elusive thing. Some kids go into REMISSION within 7 days of treatment beginning. Then there are those with cancer that is more stubborn. M-E had the stubborn kind and did not make it until September 13, 2004. We never went through the process hoping for day 7 remission, only to be told it had not occurred and were facing 6 months of additional treatment. We were always on the "everything and more" plan. I have seen the faces of the parents that did not have a child in remission by 7 days. It is a sad sad thing.
While M-E had the stubborn kind of Leukemia, she did not have the totally disrespectful nan-nan-nan kind. Some Leukemia just laughs at chemo therapy and thinks that the refusal to go away will let it stay. Well those doctors at Children's Hospital are not stupid. They have really big bags of drugs and they are not afraid to use them. Eventually Remission is achieved and then the bone marrow just has to be replaced. It does not behave and it is just flushed out of the body and new and kinder and better bone marrow gets to set up residence. ( Say an extra prayer for Elise.)
Two years, two years, two years. I can not believe it has been two years. Mary-Elizabeth woke up to a small box in the mouth of Tucker. Small turtles were held within. They are very special turtles. They had been waiting at the jewelry story for the last two years. I figured they must have been waiting for her to arrive at this point.
.
Tuesday, September 12, 2006
A Burning Bush
I am not sure what the remission prayer is but I have been experimenting for a couple of years with just very long sessions of pleading and begging and just practicing the old acceptance and trusting mode.
Mary-E is studying comparative religions now and many themes travel through each faith practice. The key word seems to be faith. The old trusting requirement. I just would like a few little signs and a few little rays of hope each day. Maybe a burning bush would be nice. Some old guy in the desert was visited by one so we know it is possible!
After I quit whinnying, I realize that the sun comes up each day, without fail. The birds sing each day without fail. My daughter tells me she loves me each day without fail. The kindness of strangers flows each day without fail.
Maybe I am looking for the wrong type of sign.
Mary-E is studying comparative religions now and many themes travel through each faith practice. The key word seems to be faith. The old trusting requirement. I just would like a few little signs and a few little rays of hope each day. Maybe a burning bush would be nice. Some old guy in the desert was visited by one so we know it is possible!
After I quit whinnying, I realize that the sun comes up each day, without fail. The birds sing each day without fail. My daughter tells me she loves me each day without fail. The kindness of strangers flows each day without fail.
Maybe I am looking for the wrong type of sign.
Monday, September 11, 2006
A Poem that Touched M-E's Heart.
This was written by a teen-ager that did not make it through her cancer treament. M-E send this to lots of people and then used it as a prayer at school. We all have these moments of hurry scurry. Being reminded of the good things is very useful.
SLOW DANCE
Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day
On the fly?
When you ask How are you?
Do you hear the reply?
When the day is done!
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say,"Hi"
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.
When you run so fast to get somewhere
You miss half the fun of getting there
.
When you worry and hurry through your day,
It is like an unopened gift....Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.--------------------
SLOW DANCE
Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day
On the fly?
When you ask How are you?
Do you hear the reply?
When the day is done!
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say,"Hi"
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.
When you run so fast to get somewhere
You miss half the fun of getting there
.
When you worry and hurry through your day,
It is like an unopened gift....Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.--------------------
New Friends
Tucker has a new friend down the street. Meet Barney. He is a 12 week old Soft Coated Wheaten terrier. Tucker and Barney roll and jump and bite at each other and then do it again. The neighbors are amazed at the amount of noise these guys can make. Oh, well. New friends can be noisy.
M-E is making new friends. It is easier for puppies but and less biting.
M-E is making new friends. It is easier for puppies but and less biting.
Saturday, September 09, 2006
Week Two and almost Year Two and how I flunked Back to School Night
Things that have grown this Summer.
Two weeks of school. No late arrivals, no true disasters other than I wore her green socks on spirit day..... How was I to know that "they were my only pair of green socks" said in a very disgusted tone with lots of emphasis on ONLY. Oh, well, I figure with everything else going on that is only a tiny infraction.
This week was Back to School Night. You go with 1000 other parents and sit in the auditorium, ( in a place you can escape.) You have a very needed prayer, introduction to all the important players like the Auction Chair and development (money raising folks) and then the Principal gives a little talk. Then all the teachers introduce themselves and what they teach. And then you are dismissed to attend the classes. 10 minutes per class, 4 minutes between classes and then done.
Oh, yeah, did I mention that I can never figure out that the main floor seems to be the 2nd floor and that sometimes I get lost when I have to figure out such things? Did I mention that I have not seen some of these people for a very long time and maybe have to stop and chat? Did I mention that the teachers have that "look" even for the parents when they come into class late? Did I mention that you are not supposed to talk in the hall? Did I mention that Sister Mary-Annette had a birthday and so I had to stop and see her once I trekked to the 4th floor? Did I point out that 4 minutes is NOT ENOUGHT TIME TO DO ALL OF THAT?
Did I mention that I skipped school? Since Mary-Elizabeth can be removed from Holy Names because of my behavior, I thought it was better to be gone than be late to another class.
Biggest news. Next Wednesday, the 13th, is 2nd anniversary of Remission. Great day for her, 8 more years to go before we use the word Cure, but every year is a step.
Did I mention that following rules was never by stong suit?
Friday, September 01, 2006
ONLY A RE-RUN FROM TWO YEARS AGO. JUST FOR A CONTRAST TO SHOW HOW FAR WE HAVE COME.
Wednesday, September 01, 2004
We have a "Nurse Visit" Today
So, shall we start a pool to see who can guess when we will come home. I want to say by 5:00 p.m. because now I am ready to be at the hospital. We have bags, new ones from Landsend have not been packed, but old ones have. We have communication devices, computers, books, fun hand projects, in-patient and out patient notebooks. We have a plan. WE ARE READYGood news. M-E has been able to go to some school. She made it a couple of hours yesterday before the heat and excitement and chemo induced tummy rebellion began. She was able to get up and to school today and I have not received a call. She is such a trooper. She has a smile and great attitude. She is a tough kid. We learned yesterday that it is better to take the $42.00 pill before you get sick.Next challenge, which lap top do we get her. I have looked and every time I am ready to click, I decide I am not smart enough to determine what we need.We are off to get our counts. Hematocrit, platelet, WBC and the all important ANC and of course #6 asparagus shot. Three more to go. Two more while awake. She hates these shots. The ANC has to be over 500 for school to be allowed. If not she will be at home with Grandmother. One day at a time. I wish I could make plans but then I plan to not make plans and I think that is a plan.
We have a "Nurse Visit" Today
So, shall we start a pool to see who can guess when we will come home. I want to say by 5:00 p.m. because now I am ready to be at the hospital. We have bags, new ones from Landsend have not been packed, but old ones have. We have communication devices, computers, books, fun hand projects, in-patient and out patient notebooks. We have a plan. WE ARE READYGood news. M-E has been able to go to some school. She made it a couple of hours yesterday before the heat and excitement and chemo induced tummy rebellion began. She was able to get up and to school today and I have not received a call. She is such a trooper. She has a smile and great attitude. She is a tough kid. We learned yesterday that it is better to take the $42.00 pill before you get sick.Next challenge, which lap top do we get her. I have looked and every time I am ready to click, I decide I am not smart enough to determine what we need.We are off to get our counts. Hematocrit, platelet, WBC and the all important ANC and of course #6 asparagus shot. Three more to go. Two more while awake. She hates these shots. The ANC has to be over 500 for school to be allowed. If not she will be at home with Grandmother. One day at a time. I wish I could make plans but then I plan to not make plans and I think that is a plan.
Week One and September 1, 2006, Boy have we come a long way.
She has only said "Mom, I am a Holy Names Girl" 20 times. She is so excited to be in school and to have started her career in high school. She comes home every day with ideas of how to spend her extra time.
Mom do you think I should be an Ambassador. I would be one of the girls that opens the doors and talks to people so they feel comfortable.
Mom should I join the Hispanic Club. I don't really know that they do but maybe I would meet some kids that half and half like me.
Mom should I be a tutor. I could help little kids learn more.
Mom......... All these choices and all these decisions. I am more focused on "Will I be able to get the laundry done? and have the slow leak in the tire fixed, and pick out baseboard for the new floor? and.............
What I really love is that Holy Names has pushed Leukemia to the back ground. Now Denim day rules our life and not Methotrexate Monday. It still creeps in every now and then when I have to make a special trip to the hospital or I hear worry in my parents voice because my daughters numbers are not as low as they should be. I love that high school has eliminated those nasty, loud, rude and smelly boys from her life. She is convinced only William ever bathed.
I will learn to love the alarm when it goes off at 5:00 a.m. and I HAVE to get up. I will learn to always make my coffee before I go to bed. I will learn that Tucker wants to play and play hard by 6:00, and what is my problem. I will learn to love watching the streaks of light come through the windows. I will learn to re-connect to quiet morning times before the car pool begins.
I already love that we are 12 days away from the 2nd year of REMISSION with no relapse to spoil it all. I already love that we will be done by the end of the year. I love that we had a fight this morning before school. I love that we have a quiet week-end coming up. I love that she is so happy right now.
But most of all I love that prayers are answered and the answer is yes. We have been on a two year journey and are weary. It tells you something if we think starting high school is a relaxing endeavourer. But it has been.
Finally Week One of a good thing.
Mom do you think I should be an Ambassador. I would be one of the girls that opens the doors and talks to people so they feel comfortable.
Mom should I join the Hispanic Club. I don't really know that they do but maybe I would meet some kids that half and half like me.
Mom should I be a tutor. I could help little kids learn more.
Mom......... All these choices and all these decisions. I am more focused on "Will I be able to get the laundry done? and have the slow leak in the tire fixed, and pick out baseboard for the new floor? and.............
What I really love is that Holy Names has pushed Leukemia to the back ground. Now Denim day rules our life and not Methotrexate Monday. It still creeps in every now and then when I have to make a special trip to the hospital or I hear worry in my parents voice because my daughters numbers are not as low as they should be. I love that high school has eliminated those nasty, loud, rude and smelly boys from her life. She is convinced only William ever bathed.
I will learn to love the alarm when it goes off at 5:00 a.m. and I HAVE to get up. I will learn to always make my coffee before I go to bed. I will learn that Tucker wants to play and play hard by 6:00, and what is my problem. I will learn to love watching the streaks of light come through the windows. I will learn to re-connect to quiet morning times before the car pool begins.
I already love that we are 12 days away from the 2nd year of REMISSION with no relapse to spoil it all. I already love that we will be done by the end of the year. I love that we had a fight this morning before school. I love that we have a quiet week-end coming up. I love that she is so happy right now.
But most of all I love that prayers are answered and the answer is yes. We have been on a two year journey and are weary. It tells you something if we think starting high school is a relaxing endeavourer. But it has been.
Finally Week One of a good thing.
Tuesday, August 29, 2006
Trips to the Eye Doctor
We are going today. Back to Dr. Balter. He was the doctor that found the swollen optic nerves two years ago. He will be surprised to see us but will also be glad to see how M-E is doing. Because I am anticipating some stress related to the visit. I am going to reward myself with some new windows. It seems to make sense to me.......
Monday, August 28, 2006
Monthly Trip to Children's
Remember when it was daily. We are so spoiled. The universe does keep you on your toes. Simple blood draw 12 minutes with the Doctor and then a bit of chemo and home. Seems like a plan. 3.5 hours later....... oh well. I am on page 30 of Bleak House, only 860 to go. The print of this entry is 10 times the size of the book.
Counts, bit high...... ANC 3330. I know there are people out there that would kill for 200. We are willing to share. She is supposed to be at 1500 to 2500 and she just will not move to center of road. She has to take more of the dreaded Methotrexate. Up two pills. She just hates that. Early to bed.
Off to school by 7:20. I may head to bed soon.
Counts, bit high...... ANC 3330. I know there are people out there that would kill for 200. We are willing to share. She is supposed to be at 1500 to 2500 and she just will not move to center of road. She has to take more of the dreaded Methotrexate. Up two pills. She just hates that. Early to bed.
Off to school by 7:20. I may head to bed soon.
Dumping
Mary-Elizabeth is scheduled for her first wake-up call in 12 minutes. Then I go take a shower and really get her out of bed. She has about 50 minutes before we leave for school. This morning is the first car pool. I better look at a map.
We then weave through Seattle, make some conversation and hopefully arrive at school in a timely manner. The girls have to go to their lockers and then start their first day.
Some naive parent asked if I was excited to meet her teachers. I said yes, but then realized there was an expectation I would go inside with her.
Hello....... I am a Dumper. I come from a long line of dumpers and have been dumped on many occasions. I have been dumping M-E since Kindergarten. I dump at school, the hospital and the airport. The train, crew, and the movie theater. It is character building to have to find your kindergarten class on the second day by yourself. You learn to identify better land marks. How was I to know there were big white globe lights in every hall way?
It was not until much much later I realized that Mom does not parallel park. In any event, I can parallel park and I am still dumping.
4 more minutes until the wake-up call.
We then weave through Seattle, make some conversation and hopefully arrive at school in a timely manner. The girls have to go to their lockers and then start their first day.
Some naive parent asked if I was excited to meet her teachers. I said yes, but then realized there was an expectation I would go inside with her.
Hello....... I am a Dumper. I come from a long line of dumpers and have been dumped on many occasions. I have been dumping M-E since Kindergarten. I dump at school, the hospital and the airport. The train, crew, and the movie theater. It is character building to have to find your kindergarten class on the second day by yourself. You learn to identify better land marks. How was I to know there were big white globe lights in every hall way?
It was not until much much later I realized that Mom does not parallel park. In any event, I can parallel park and I am still dumping.
4 more minutes until the wake-up call.
Sunday, August 27, 2006
Meet Juan Pablo with His adoring Sister
Big Sister M-E was a bit hesitant but seemed to know what to do. she did point out that the Sierra Cowlick has been gifted to all of the siblings. My father is proud the this new one was named after him. John Lanham would prefer to be called John Paul from here on in. 
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