subject to change for the slightest reason:
January 3 LP
January 13 LP and Bone Marrow Aspiration
January 16 Admission for "conditioning" IE High Dose Chemo and Total Body Radiation
January 24 two mismatched, unrelated units of Cord Blood given
February 24, hopefully a new bunch of working bone marrow.
Until then.......... More appointments and things to do then anyone ever needed to know about.
Saturday, December 31, 2011
Thursday, December 29, 2011
Transplant 101
#1 Ablate all the bone marrow. Do with with Cytoxin and some sort of F drug.
#2 8 doses of Total body Radiation over 4 days. Travel to University of Washington Hospital
#3 Receive two unmatched, unrelated units of Cord Blood. Both have 4 of 6 HLA markers but they are mismatched on different markers.
Wait, receive many many transfusions, receive antibiotics, develop mouth sores, use a morphine pump to manage the pain, receive liquid nutrition.
Wait, wait and see which unit wins the battle to be your bone marrow. Wait and see how many cells realize they have been re-homed and don't want to stay so they start to attack the new strange body. Wait and see if they learn to be happy in their new home (Graft vs. Host Disease). See if they learn to be helpful and start to play nice and help the new host to be healthy.
Transplant by the numbers:
10% of cord blood refuses to work at all
60 to 70 double cord blood transplants have been done at the Hutch over the last 7 years.
75% of Hosts are attacked by their Graft
30 days from Transplant to En-Graftment
0 % chance to survive without transplant
40% chance to survive with it.
Since she always seems to have the rare side effects, I am going to grasp on to the fact that survival is rare.
Note to self: in the next life remember to have a dozen children. Save all their cord blood. Take more naps.
#2 8 doses of Total body Radiation over 4 days. Travel to University of Washington Hospital
#3 Receive two unmatched, unrelated units of Cord Blood. Both have 4 of 6 HLA markers but they are mismatched on different markers.
Wait, receive many many transfusions, receive antibiotics, develop mouth sores, use a morphine pump to manage the pain, receive liquid nutrition.
Wait, wait and see which unit wins the battle to be your bone marrow. Wait and see how many cells realize they have been re-homed and don't want to stay so they start to attack the new strange body. Wait and see if they learn to be happy in their new home (Graft vs. Host Disease). See if they learn to be helpful and start to play nice and help the new host to be healthy.
Transplant by the numbers:
10% of cord blood refuses to work at all
60 to 70 double cord blood transplants have been done at the Hutch over the last 7 years.
75% of Hosts are attacked by their Graft
30 days from Transplant to En-Graftment
0 % chance to survive without transplant
40% chance to survive with it.
Since she always seems to have the rare side effects, I am going to grasp on to the fact that survival is rare.
Wednesday, December 28, 2011
So Hospital Food quality is not just a Children's Hospital Issue.
http://news.bbc.co.uk/today/hi/listen_again/newsid_9668000/9668774.stm
On December 22nd I met with some more folks at Children's hospital. I don't really think there is a real understanding of the concept of Food as Medicine. They are clearly confused about the purpose of food and how important it is to make sure people are fed.
An entire part of the LiveStrong web site is devoted to food and nutrition. http://www.livestrong.com/diet-and-nutrition/
I asked what was allocated for the children's food budget and was told they spend what they need. When asked if the cafeteria food was subsidized, I was told no and then yes. When asked why there was not any protein on the salad bar, I was told "People would eat it".
When asked what was being changed, I was told that in 2015 it would be wonderful. When I asked what would happen by mid January, they were less optimistic but there was some talk about doing a "Pilot Study" with the young adults.
This is not brain surgery or even LP's done in IR. This is food. This takes ingredients, preferably fresh and changing it's form via the adding of heat and taking it to people to put in their bodies. This is fresh greens, and veggies, and fruit and fish........... Simple, clean direct from the kitchen to the consumer.
There has been no focus on making things better now other than there will be a new computer system by each bed and the kids will know the calorie count of what they are eating. The food will be the same. The bread will be the bad cheap frans stuff, lettuce will be Iceberg, the food cold and smelly when delivered. The food will take up to 40 minutes to get to the floor.
I did visit the kitchen. At 1:30 there was no cooking happening. The kitchen is horribly small. I was sort of shocked to see how small but there was a soup kettle but it is not used for that purpose. There was not stock pot soup on hand. There was Amy's lentil soup and some Stagg Chili. Since most, if not all the soup is really watery, I think they take a few cans of Amy's and water it down. Most of the soups are very thin and unsubstantial. If you want Navy bean soup, you have to work really hard to get any beans.
Okay, I get that the kitchen is small. Okay, so order GOOD stuff. If you are not going to even try and cook, small batches of nutritional food, try to dump better stuff from the bags.
Roast some veggies, steam some of the veggies. Make some soup in the kettle that has stuff in it. Buy better lettuce, put some pre-cut ham and chicken on the salad bar.
Put the calorie count on your most popular Asian Appetizer bar. See how popular it would be.
Okay, lets see if people follow through. Lets see if they change when they take the food to the floor. Lets see if the food is delivered in a way that keeps it hot and appetizing. Lets see if there are whole wheat items offered, lets see if there are the small changes.
I don't understand how hard it is to back a few cookies and serve them. I don't buy the argument that if you bake cookies people are going to complain that you are a cookie pusher. You are a hot dog pusher and are proud of it.
I think for a period of 7 days, executives and the managers of the food service and the hospital should have to be served on the trays three times a day and not be allowed to bring anything from home or go out to lunch.
I think they should also have to take dinner home from the cafeteria for their families. I think the Chef should have to meet with his clients, our children.
Bon Appetite prepares great stuff at the Hutch. Lunch was cheaper than at Children's and appitizing. Go figure.
On December 22nd I met with some more folks at Children's hospital. I don't really think there is a real understanding of the concept of Food as Medicine. They are clearly confused about the purpose of food and how important it is to make sure people are fed.
An entire part of the LiveStrong web site is devoted to food and nutrition. http://www.livestrong.com/diet-and-nutrition/
I asked what was allocated for the children's food budget and was told they spend what they need. When asked if the cafeteria food was subsidized, I was told no and then yes. When asked why there was not any protein on the salad bar, I was told "People would eat it".
When asked what was being changed, I was told that in 2015 it would be wonderful. When I asked what would happen by mid January, they were less optimistic but there was some talk about doing a "Pilot Study" with the young adults.
This is not brain surgery or even LP's done in IR. This is food. This takes ingredients, preferably fresh and changing it's form via the adding of heat and taking it to people to put in their bodies. This is fresh greens, and veggies, and fruit and fish........... Simple, clean direct from the kitchen to the consumer.
There has been no focus on making things better now other than there will be a new computer system by each bed and the kids will know the calorie count of what they are eating. The food will be the same. The bread will be the bad cheap frans stuff, lettuce will be Iceberg, the food cold and smelly when delivered. The food will take up to 40 minutes to get to the floor.
I did visit the kitchen. At 1:30 there was no cooking happening. The kitchen is horribly small. I was sort of shocked to see how small but there was a soup kettle but it is not used for that purpose. There was not stock pot soup on hand. There was Amy's lentil soup and some Stagg Chili. Since most, if not all the soup is really watery, I think they take a few cans of Amy's and water it down. Most of the soups are very thin and unsubstantial. If you want Navy bean soup, you have to work really hard to get any beans.
Okay, I get that the kitchen is small. Okay, so order GOOD stuff. If you are not going to even try and cook, small batches of nutritional food, try to dump better stuff from the bags.
Roast some veggies, steam some of the veggies. Make some soup in the kettle that has stuff in it. Buy better lettuce, put some pre-cut ham and chicken on the salad bar.
Put the calorie count on your most popular Asian Appetizer bar. See how popular it would be.
Okay, lets see if people follow through. Lets see if they change when they take the food to the floor. Lets see if the food is delivered in a way that keeps it hot and appetizing. Lets see if there are whole wheat items offered, lets see if there are the small changes.
I don't understand how hard it is to back a few cookies and serve them. I don't buy the argument that if you bake cookies people are going to complain that you are a cookie pusher. You are a hot dog pusher and are proud of it.
I think for a period of 7 days, executives and the managers of the food service and the hospital should have to be served on the trays three times a day and not be allowed to bring anything from home or go out to lunch.
I think they should also have to take dinner home from the cafeteria for their families. I think the Chef should have to meet with his clients, our children.
Bon Appetite prepares great stuff at the Hutch. Lunch was cheaper than at Children's and appitizing. Go figure.
Day one at the Hutch part of SCCA
So, Parking is good. As Mary-Elizabeth directed: You turn in before the circlely turning thing. (Note to self: do not take child when navigation is a required skill)
The signs are good. Purelle is weird but once I realized what it was and the amount to use it was fine. I don't see lots of people using it, but then I have become a nut about it. Masks are very popular. I was ready to start wearing one from peer pressure.
The elevators..... oh dear. Today I am going to look for stair wells. They are slow and small and very crowded. This is not a stair taking group.
The staff, seems fine. Not a lot of them and lots of yelling. Sierra, room 2. Smith room 26. Whitehall room 32. Sort of like getting your pizza order. A bit wierd but the view from the exam room is fabulous.
It is very apprent that no one goes there alone. It is a group activity for the adults. As I was thinking about it this A.M. I wonder if this is the Christmas visitor time. Lots of people are from out of town and everyone has come to see them. It would be rude to go to the Space Needle if Mom is at the Hutch.
Smell: Oh dear. It might be a smoke free building but people with cancer and their families are smokers. It is bad. People that smoke have no idea how bad they smell. I was told I could not spray the smelly people with some sort of air fresherner or maybe fabrize.
The halls seem small. Really small. Like you cann't get away from people and are always running into them. Maybe because I have a million bags with me, ummmmm. I will work on it.
I don't like adult cancer patients. They are so different than kids. Kids don't endlessly discuss their cancer. Mary-Elizabeth said it best. Kids do cancer with grace.
The food was good. Small but great soups, good choices. There is a recognition at the Hutch that food is medicine and that while stressed, it is better not too fall back on high fat, salty, foods. Hey, what a concept.
We really miss Childrens, bad food and all. We will be there on ocassion and life will be good again. We have appointments there every day for the next 2 weeks.
Admission on the 16th of January. I will know more today after we meet with Dr. Woflfery. I have a bunch of quesitons, of course.
Waves of panic overtake me every now and then. I just hate this. Oh, did I say I don't want to be here and do this. What was I thinking, I loved fighting over peoples marble topped dressers.
The signs are good. Purelle is weird but once I realized what it was and the amount to use it was fine. I don't see lots of people using it, but then I have become a nut about it. Masks are very popular. I was ready to start wearing one from peer pressure.
The elevators..... oh dear. Today I am going to look for stair wells. They are slow and small and very crowded. This is not a stair taking group.
It is very apprent that no one goes there alone. It is a group activity for the adults. As I was thinking about it this A.M. I wonder if this is the Christmas visitor time. Lots of people are from out of town and everyone has come to see them. It would be rude to go to the Space Needle if Mom is at the Hutch.
Smell: Oh dear. It might be a smoke free building but people with cancer and their families are smokers. It is bad. People that smoke have no idea how bad they smell. I was told I could not spray the smelly people with some sort of air fresherner or maybe fabrize.
The halls seem small. Really small. Like you cann't get away from people and are always running into them. Maybe because I have a million bags with me, ummmmm. I will work on it.
I don't like adult cancer patients. They are so different than kids. Kids don't endlessly discuss their cancer. Mary-Elizabeth said it best. Kids do cancer with grace.
The food was good. Small but great soups, good choices. There is a recognition at the Hutch that food is medicine and that while stressed, it is better not too fall back on high fat, salty, foods. Hey, what a concept.
We really miss Childrens, bad food and all. We will be there on ocassion and life will be good again. We have appointments there every day for the next 2 weeks.
Admission on the 16th of January. I will know more today after we meet with Dr. Woflfery. I have a bunch of quesitons, of course.
Waves of panic overtake me every now and then. I just hate this. Oh, did I say I don't want to be here and do this. What was I thinking, I loved fighting over peoples marble topped dressers.
Monday, December 26, 2011
Christmas was a great Distraction. Let the worrying begin.
So. Tomorrow. We will be spending most of tomorrow at the SCCA building down by Lake Union. There will be checking in, examinations, tests, meeting, signing of papers and pledging of big money to cover extras and there will be the "THESE ARE THE POSSIBLE SIDE-EFFECTS" the old full disclosure thing. I think I need to schedule some drinking when we are done.
We will be much more informed and more afraid, and more scared and more terrified. But there is no other choice. None. While the risks are huge, the non-treatment is option has a certain outcome. I can only imagine if she relapses a third time.
Maybe the reason I love terriers is that they never give up. They are the reason we have the word "dogged" . It has meaning and a valid reason behind it.
Lily knew there was food on the table and it took her all day but she found it.
We know there is health out there and we are going to find it and embrace it.
Now I must do a few more loads of dishes.
We will be much more informed and more afraid, and more scared and more terrified. But there is no other choice. None. While the risks are huge, the non-treatment is option has a certain outcome. I can only imagine if she relapses a third time.
Maybe the reason I love terriers is that they never give up. They are the reason we have the word "dogged" . It has meaning and a valid reason behind it.
Lily knew there was food on the table and it took her all day but she found it.
We know there is health out there and we are going to find it and embrace it.
Saturday, December 24, 2011
2011 Christmas Letter......
ONCE UPON A TIME there was a princess named Mary-Elizabeth. She lived in the wonderful kingdom of Seattle Washington and was loving her life. She had a fabulous family, especially her mom, great friends, wonderful animals and loved her very very pink room.
When she was 12, an evil dragon name Sir Luekemia came to the kingdom and did battle with Mary-Elizabeth. All the forces of good came together to fight the dragon. It was a long long battle but Sir Luekemia was smitten and sent away.
The princess went on to go to finish her education at St. Joes Palace, the Holy Names Castle and was well ensconced with others of her own kind in the Kingdom of the Zags.
She met many wonderful other Princes and Princesss that spent time with her in the Zag's Cathedral where they watched the many warriors battle other tall lanky sorts from other Kingdoms take the small brown ball and joust for the right to push it in tall basket. She studied with great wizards and other smart elders and loved to make numbers do tricks and to learn to built new castles and light them with magical candles.
She made the long journey from Seattle to Zagdum and was well established in her life with others of her own kind for a second year. Princes Meb and Princess Kelly and Princess Noel were in their cozy chambers and had become known for their hospitality and ribs. School was hard but she is smart and she was studying and enjoying her time learning. But alas something changed. She began to be weary and weird colored marks began to appear in places that were of concern. She consulted the local witch doctor and was told to return to her bed chamber and sleep. Her tiredness continued and she began to feel worried and fretted about what was happening.
She finally dispatched the messengers and Magician Karen W called the witch doctor. Blood was let. To every one's dismay and surprise, Sir Liukemia's and his older much nastier brother Sir ReLiukemia had arrived with a vengeance. The Princess cried and the Queen cried and King pretended not to cry (but we know better), many many of the Knights and Dukes and Duchesses were shocked and aghast. Many words of despair were repeated. There was much wailing and teeth gnashing and threats and pleas made to the great Gods in the sky. It was a dark and gloomy time.
Of Course Princess Meb did not give up. The great healers and spiritual guides and magical tall warriors and Wizards and wise givers of knowledge gathered again to fight the Dragons. Many many new weapons were gathered for the battle. Blue Thunder full of thunder bolts, and many other elixirs of great power were concocted in the dungeons. The spells were quickly cast to vanquish the evil and treacherous Dragons.
The long beautiful hair of the Princess fell out. She called the kingdom’s hair dresser Sir Jerry to clear the hair from the royal head., She decided it was so worth losing her hair, feeling ill and tired in order vanquish the Dragons and their ilk. She became tired and weak and but knew it was a battle to the death and she was not going to be beaten by Sir Relukemia. She would triumph.
After the first battle and second campaign, the magical healers will start to do the mystical spells to forever remove the place the evil dragons live. New and much improved spells will be spun and replace what that lies deep in her bones. The Dragons will never ever ever be able to come back and steal the strength and health of the great Princess again.
The princess will be trapped in her Seattle Tower for at least a year. She and her Queen Sally will be spending much time with the Magicians and Healers at the healing castle. There will be many months of confinement but all know she will win this most difficult of battles.
She will regain her hair. She will be better and stronger. She will be ready to return to the Kingdom of Zags and continue her wonderful life in about 12- 18 moons. The many Princes and Princesses, the great Wizards and elders and keepers of the Gods will welcome her back with open arms. They will honor her and be inspired by her bravery and her fighting spirit.
She Is Not Going To Let The Dragons Win!!
The various messengers will report on the journey was she travels back to wellness.
Princess Meb can be reached at MEB12@msn.com, or 206-915-5875.
Her tale is being reported Mary-elizabethsbump.blogspot.com
Her fearless Queen/Goddess Sally is hiding at Quilting_Goddess@yahoo.com and 206 605 9224
Prayers, joining the Bone Marrow Registry, giving blood, donating cord blood and platelets is helpful. The Goddess Sally thinks it is alright to do just a bit of swearing at the Universe for allowing such a wonderful person to be inflicted twice in 7 years with this affliction.
When she was 12, an evil dragon name Sir Luekemia came to the kingdom and did battle with Mary-Elizabeth. All the forces of good came together to fight the dragon. It was a long long battle but Sir Luekemia was smitten and sent away.
The princess went on to go to finish her education at St. Joes Palace, the Holy Names Castle and was well ensconced with others of her own kind in the Kingdom of the Zags.
She met many wonderful other Princes and Princesss that spent time with her in the Zag's Cathedral where they watched the many warriors battle other tall lanky sorts from other Kingdoms take the small brown ball and joust for the right to push it in tall basket. She studied with great wizards and other smart elders and loved to make numbers do tricks and to learn to built new castles and light them with magical candles.
She made the long journey from Seattle to Zagdum and was well established in her life with others of her own kind for a second year. Princes Meb and Princess Kelly and Princess Noel were in their cozy chambers and had become known for their hospitality and ribs. School was hard but she is smart and she was studying and enjoying her time learning. But alas something changed. She began to be weary and weird colored marks began to appear in places that were of concern. She consulted the local witch doctor and was told to return to her bed chamber and sleep. Her tiredness continued and she began to feel worried and fretted about what was happening.
She finally dispatched the messengers and Magician Karen W called the witch doctor. Blood was let. To every one's dismay and surprise, Sir Liukemia's and his older much nastier brother Sir ReLiukemia had arrived with a vengeance. The Princess cried and the Queen cried and King pretended not to cry (but we know better), many many of the Knights and Dukes and Duchesses were shocked and aghast. Many words of despair were repeated. There was much wailing and teeth gnashing and threats and pleas made to the great Gods in the sky. It was a dark and gloomy time.
Of Course Princess Meb did not give up. The great healers and spiritual guides and magical tall warriors and Wizards and wise givers of knowledge gathered again to fight the Dragons. Many many new weapons were gathered for the battle. Blue Thunder full of thunder bolts, and many other elixirs of great power were concocted in the dungeons. The spells were quickly cast to vanquish the evil and treacherous Dragons.
The long beautiful hair of the Princess fell out. She called the kingdom’s hair dresser Sir Jerry to clear the hair from the royal head., She decided it was so worth losing her hair, feeling ill and tired in order vanquish the Dragons and their ilk. She became tired and weak and but knew it was a battle to the death and she was not going to be beaten by Sir Relukemia. She would triumph.
After the first battle and second campaign, the magical healers will start to do the mystical spells to forever remove the place the evil dragons live. New and much improved spells will be spun and replace what that lies deep in her bones. The Dragons will never ever ever be able to come back and steal the strength and health of the great Princess again.
The princess will be trapped in her Seattle Tower for at least a year. She and her Queen Sally will be spending much time with the Magicians and Healers at the healing castle. There will be many months of confinement but all know she will win this most difficult of battles.
She will regain her hair. She will be better and stronger. She will be ready to return to the Kingdom of Zags and continue her wonderful life in about 12- 18 moons. The many Princes and Princesses, the great Wizards and elders and keepers of the Gods will welcome her back with open arms. They will honor her and be inspired by her bravery and her fighting spirit.
She Is Not Going To Let The Dragons Win!!
The various messengers will report on the journey was she travels back to wellness.
Princess Meb can be reached at MEB12@msn.com, or 206-915-5875.
Her tale is being reported Mary-elizabethsbump.blogspot.com
Her fearless Queen/Goddess Sally is hiding at Quilting_Goddess@yahoo.com and 206 605 9224
Prayers, joining the Bone Marrow Registry, giving blood, donating cord blood and platelets is helpful. The Goddess Sally thinks it is alright to do just a bit of swearing at the Universe for allowing such a wonderful person to be inflicted twice in 7 years with this affliction.
Friday, December 23, 2011
Christmas is about Death or It is better to be at the top of the Food Chain.
Secretly I love when we have some sort of soup so we can properly adore the Soup Tureen. It is a great soup tureen. Not your ordinary one., It is worthy of it's own blog post.
But back to death to creatures in honor of Christmas Eve.
So Crab Bisque. It requires crabs, lots of crabs. They must be cooked, cracked, shelled, then there is much to do with chopping and boiling and then there is straining, and so forth and so on. After a couple of hours of intense work and cooking a small amount of stock is produced. It is pretty unremarkable but it is there.
It is then reheated, cream and bread crumbs are added and cooked some more. Finally crab is added and it is served. It is heaven in a bowl and worth all the work, all the running round town for the right crabs. They must not be cooked a few days before or even the day before. They must be cooked that day. If they are not located, then Murder is required.
Today there was death and mayhem. I even felt bad about it. I don't usually feel bad about dumping spider like creatures into hot boiling water but today I did.
I should not have named them, taken their pictures and then talked with them. I should have taken them out to Golden Gardens and set them free. I could then have gone and purchased two cans of soup, cream of asparagus and cream of mushroom. Added some sherry, half and half and then some canned crab.
Lets put it this way. It is good to be a the top of the food chain.
Thursday, December 22, 2011
The Christmas Sneeze and other reasons to Panic
The sneeze, the dreaded sneeze.
The request to go to the MALL.
The failure to find the Crab Bisque Recipe
The realization that there is no Christmas Wrapping paper
Knowing the House Keeper is coming and the house is lost under the debris which is Christmas.
Reasons not to Panic:
The Sneeze appears to only be a sneeze
The mall is empty at 10:00 am and it takes less than an hour.
I did not sell my cookbook with the best crab bisque recipe in it and was pleased to have a chance to look through all the cookbooks and revisit such good good friends.
It is fun to wrap everything in Birthday paper.
WE have 24 hours to dig out. I am going to look at the house as if a blizzard has hit and just start clearing a path or two.
Merry Christmas.
The request to go to the MALL.
The failure to find the Crab Bisque Recipe
The realization that there is no Christmas Wrapping paper
Knowing the House Keeper is coming and the house is lost under the debris which is Christmas.
Reasons not to Panic:
The Sneeze appears to only be a sneeze
The mall is empty at 10:00 am and it takes less than an hour.
I did not sell my cookbook with the best crab bisque recipe in it and was pleased to have a chance to look through all the cookbooks and revisit such good good friends.
It is fun to wrap everything in Birthday paper.
WE have 24 hours to dig out. I am going to look at the house as if a blizzard has hit and just start clearing a path or two.
Sunday, December 18, 2011
Restful time....
We have received our packet of information from the Hutch...
We have one more appointment as a Hem/Onc patient tomorrow and then we are transferred to the transplant team. We are on the Green team and will meet for the first time on the 27th and the 28th. There will be a series of tests while they determine whether or not Mary-E is really a transplant team. There will be everything from blood work to another Bone Marrow Aspiration and a million more tests. It is almost as if we never did any of this stuff.
After the tests are put together they will decide if her body can take a transplant and then they have to get the insurance company to sign on to the plan. The Hutch does not like Blue Cross of Illinois very much. They are known for not responding and for delaying the process by as much as a week.
Now a week might not seem like much time in the regular world but it could be fatal to Mary-Elizabeth. Every day that she is not moving forward without chemo she can relapse or she could catch a cold or ........ I don't even want to think about all the "if we delays" It is just an added layer of stress. I am sure moving the insurance to Illinois was a good corporate decision but then while corporations are now people, they don't have children that are deathly ill.
So after we wait for some insurance lackey to second guess the Hutch, we wait and wait. When the waiting is over.
Hopefully that will not keep her from being admitted. She will have three or four days of intense chemo to kill her bone marrow. When we ask what they will be using, they are very vague and not very forthcoming with information. Maybe I don't want to know since there is no other option or input. I will not be picking the poisons during this process.
After the chemo she will have 4 days of total body radiation to kill the rest of her bone marrow. This will happen only on Monday to Friday so there is no way to know the schedule.
After her bone marrow is dead, she will be given three small bags of cells. It is a transfusion that lasts a couple of hours and then.... more waiting.
This will be waiting on a grand scale. We already know that it takes longer for the cord blood to know what to do. The stem cells will wander around her body for a while and by the 30th day they should be working. During the 30 days there is a constant battle to keep her alive. Transfusions, TPN, fluids, you name it they will be doing it.
After they baby cells go to work Mary-Elizabeth will have to build a new immune system. All her shots, all of her prior immunity will have been wiped out. When asked what she is allergic to, she won't know. It is like having a baby and a sick one at that.
So...... new adventures. New nurses, new doctors, new team coordinators. The only person we get to keep is Fred, our social worker. The hope is that things go well and we get to go back to Hem/Onc post transplant.
There is a tunnel, we have not entered it yet.
On a great note, she was able to go to the Gonzaga game and they won!. It made her Christmas and maybe her year. She was able to wear her Kennel Club shirt and be with her peeps and feel normal for a few hours.
Tree is up, the outdoor lights are up, Lily is home from Spokane. The house will be ready for Santa and the Christmas Cake is ordered. What could be better.
It is a dark but restful time. The candles are casting a gentle light and the music is good. The dark is appropriate to keep us focused on the journey ahead. One we are preparing to take.
We have one more appointment as a Hem/Onc patient tomorrow and then we are transferred to the transplant team. We are on the Green team and will meet for the first time on the 27th and the 28th. There will be a series of tests while they determine whether or not Mary-E is really a transplant team. There will be everything from blood work to another Bone Marrow Aspiration and a million more tests. It is almost as if we never did any of this stuff.
After the tests are put together they will decide if her body can take a transplant and then they have to get the insurance company to sign on to the plan. The Hutch does not like Blue Cross of Illinois very much. They are known for not responding and for delaying the process by as much as a week.
Now a week might not seem like much time in the regular world but it could be fatal to Mary-Elizabeth. Every day that she is not moving forward without chemo she can relapse or she could catch a cold or ........ I don't even want to think about all the "if we delays" It is just an added layer of stress. I am sure moving the insurance to Illinois was a good corporate decision but then while corporations are now people, they don't have children that are deathly ill.
So after we wait for some insurance lackey to second guess the Hutch, we wait and wait. When the waiting is over.
Hopefully that will not keep her from being admitted. She will have three or four days of intense chemo to kill her bone marrow. When we ask what they will be using, they are very vague and not very forthcoming with information. Maybe I don't want to know since there is no other option or input. I will not be picking the poisons during this process.
After the chemo she will have 4 days of total body radiation to kill the rest of her bone marrow. This will happen only on Monday to Friday so there is no way to know the schedule.
After her bone marrow is dead, she will be given three small bags of cells. It is a transfusion that lasts a couple of hours and then.... more waiting.
This will be waiting on a grand scale. We already know that it takes longer for the cord blood to know what to do. The stem cells will wander around her body for a while and by the 30th day they should be working. During the 30 days there is a constant battle to keep her alive. Transfusions, TPN, fluids, you name it they will be doing it.
After they baby cells go to work Mary-Elizabeth will have to build a new immune system. All her shots, all of her prior immunity will have been wiped out. When asked what she is allergic to, she won't know. It is like having a baby and a sick one at that.
So...... new adventures. New nurses, new doctors, new team coordinators. The only person we get to keep is Fred, our social worker. The hope is that things go well and we get to go back to Hem/Onc post transplant.
There is a tunnel, we have not entered it yet.
On a great note, she was able to go to the Gonzaga game and they won!. It made her Christmas and maybe her year. She was able to wear her Kennel Club shirt and be with her peeps and feel normal for a few hours.
Tree is up, the outdoor lights are up, Lily is home from Spokane. The house will be ready for Santa and the Christmas Cake is ordered. What could be better.
Tuesday, December 13, 2011
HIPPA
The think that my lights could use some help.
So HIPPA, the beast that won't quit consuming common sense continues to plague us. I see that the 4 month old baby that flirts with everyone that walks by has no parents here.
"I can not admit or deny we have any baby's on this floor" Really, I can see that child, there he is, why can't you tell me? It would be a violation of HIPPA. Can you let me know the provision. I have to go take care of the baby.
I see Allie is checking in, because her chart has been delivered to the floor and sitting on the front desk? We can neither admit or deny we have a patient of that name. In fact we don't have any patients at this hospital. If we tell you we have patients we would have to kill you.
So since you don't have any patients, can I upgrade my room? You are a trouble causer.....
So HIPPA has reached the Psychic world. Margaret went to consult the Tarot Lady on Whidbey Island. She wanted to ask about Mary-Elizabeth. Tanya declined and explained that she could not do so because she did not have our permission to speak to our spiritual guides.
Really.........
Back to the hospital tomorrow for more blood work.
Saturday, December 10, 2011
Worry....
No thing is really happening right now. I am home. Mary-E is with her dad and sibs. 3 of 15 light strings were not working when we tested to put up outside. The Eclipse was a bust because of the clouds. Christmas cards are being prepared for mailing...
So for the next couple of weeks we are doing normal things.
More worry but not really. I am working really really hard to recharge my batteries. Naps, reading, a bit of NetFlix. Cooking some dinner, folding cranes, just focussing on this moment in time. The next Christmas card, the next trip to the post box. The next new discovery.
Todays Discovery:
When you are walking the dog at 5:15am and it is 28 degrees, the world if sparkly...glitter everwhere sparkly... sort of cool.
So for the next couple of weeks we are doing normal things.
More worry but not really. I am working really really hard to recharge my batteries. Naps, reading, a bit of NetFlix. Cooking some dinner, folding cranes, just focussing on this moment in time. The next Christmas card, the next trip to the post box. The next new discovery.
Todays Discovery:
When you are walking the dog at 5:15am and it is 28 degrees, the world if sparkly...glitter everwhere sparkly... sort of cool.
Friday, December 09, 2011
so is this a good thing?
I know people love to read and my writing has been something that has been a life saver for me. It is nice to know that non-family and friends have found it useful.
Tuesday, December 06, 2011
The Rhythm of Cancer
So here we sit and we sit. And wait for the next song to begin. It is a simple dance. The steps are basic
1. Go to Childrens
2. Have blood drawn
3. Wait 1-1000 2-1000 3-1000.......
4. Visit with Karyn.
5. Receive results.
6. Determine if we are on doing a new dance. or stay with the current one. There are several versions. Some allow for just simple steps some for fancy steps, some require new learning like when platelets are needed and there is much fancy foot work to figure how to give them.
Sometimes the results let us go to a new and improved dance class.
6. Have new chemo. Pause 1-1000, 2-1000,3-1000. Wait for the counts to drop. 170 to 129 to 97 to 42 to < 5.
7. Do the dance until the numbers return to normal. Add some more blood add a few special platelets add some Neulasta for a bit of spice.
8. Just when the waltz is really settling in go back to the hospital for more chemo and we start the dance again.
Repeat: again and again and again.
Counts up: we start, counts down: we pray for them to go up so we can start again... We meet our various partners and we all commiserate about the ball and how it is going. Who is getting to dance, who is waiting for results , who is waiting to dance and who is waiting to wait to dance. We chat like old friends although we each are dancing to a different tune. We basically know the music but each have different partners and different dresses and different hair styles. They are all related but similar.
Some times the dance is success, sometimes it is disappointing. Sometimes great triumphs come from a set of lessons, sometimes we are sent home to try again. Sometimes we don't get to go home at all. We are always wondering how the next Virginia Reel will turn out.
The hovering mothers would be familiar to anyone who came to observe. They fuss, they talk about how the men have all gone to smoke and drink in another room. We criticize the food, the music, the eligible partners and all are secretly hoping our child will be the one chosen for the best dance and have a great triumph.
We do this over and over again, glad we still get to go to the ball. Afraid to go each and every time, knowing we might be able to ever dance again, but praying the dance won't end for us.
1. Go to Childrens
2. Have blood drawn
3. Wait 1-1000 2-1000 3-1000.......
4. Visit with Karyn.
5. Receive results.
6. Determine if we are on doing a new dance. or stay with the current one. There are several versions. Some allow for just simple steps some for fancy steps, some require new learning like when platelets are needed and there is much fancy foot work to figure how to give them.
Sometimes the results let us go to a new and improved dance class.
6. Have new chemo. Pause 1-1000, 2-1000,3-1000. Wait for the counts to drop. 170 to 129 to 97 to 42 to < 5.
7. Do the dance until the numbers return to normal. Add some more blood add a few special platelets add some Neulasta for a bit of spice.
8. Just when the waltz is really settling in go back to the hospital for more chemo and we start the dance again.
Repeat: again and again and again.
Counts up: we start, counts down: we pray for them to go up so we can start again... We meet our various partners and we all commiserate about the ball and how it is going. Who is getting to dance, who is waiting for results , who is waiting to dance and who is waiting to wait to dance. We chat like old friends although we each are dancing to a different tune. We basically know the music but each have different partners and different dresses and different hair styles. They are all related but similar.
Some times the dance is success, sometimes it is disappointing. Sometimes great triumphs come from a set of lessons, sometimes we are sent home to try again. Sometimes we don't get to go home at all. We are always wondering how the next Virginia Reel will turn out.
The hovering mothers would be familiar to anyone who came to observe. They fuss, they talk about how the men have all gone to smoke and drink in another room. We criticize the food, the music, the eligible partners and all are secretly hoping our child will be the one chosen for the best dance and have a great triumph.
We do this over and over again, glad we still get to go to the ball. Afraid to go each and every time, knowing we might be able to ever dance again, but praying the dance won't end for us.
Saturday, December 03, 2011
Finding My Voice and Having It Heard
Saturday. Back at the hospital but really rested and relaxed and with clean hair.
Yesterday was a whirlwind of people listening and things happening. The room was cleaned and the fridge full of really old food was cleared out and the head nurse came to discuss issues regarding how this part of the hospital is so very different than the Hem/Onc floor and there is a meeting set up with the head of dietary and we are going to add some other people and .......
But this very lovely, full of really green lettuce and good lemons came out of the kitchen. Along with a great plate of strawberries and lots of oreos and milk.
The kitchen also worked on getting our roommate Katie some beef broth ramen that she was Craving. They were both so happy.
When they are so sick and have lost so much and are not able to go out into the world and everything is dangerous and it is not possible to even be touched by the world, something warm and satisfying is wonderful. I would hope that the Chef would come as meet the kids he made happy, maybe next time.
Thank-you for making it happen Chef.
The omelet was wonderful the satsumas are great and she has ordered her favorite BLT.
I love progress.
Yesterday was a whirlwind of people listening and things happening. The room was cleaned and the fridge full of really old food was cleared out and the head nurse came to discuss issues regarding how this part of the hospital is so very different than the Hem/Onc floor and there is a meeting set up with the head of dietary and we are going to add some other people and .......
The kitchen also worked on getting our roommate Katie some beef broth ramen that she was Craving. They were both so happy.
When they are so sick and have lost so much and are not able to go out into the world and everything is dangerous and it is not possible to even be touched by the world, something warm and satisfying is wonderful. I would hope that the Chef would come as meet the kids he made happy, maybe next time.
Thank-you for making it happen Chef.
The omelet was wonderful the satsumas are great and she has ordered her favorite BLT.
I love progress.
Thursday, December 01, 2011
We Had A Meeting
$8.95 Pallinos UVillage. YUMI can totally see how this feels like an unfair personal attack but this is literally life and death for both Mary-E and me. If we cannot figure out a way to feed her from here and I have to eat the food for three months, she is going to weigh 12 pounds and I am going to weight 5000.
I explained my concerns and fears and he explained the current limitations of the kitchen and the staffing. He was hired and given blueprints for a new facility and then they did not do the remodel.
He won't be in a proper kitchen until 2015. He is clearly frustrated and has not been given resources to do what he wants to do. He has the ability and will be doing a top notch job when he has the new kitchen. You have no idea how many times I heard about what is going to happen.
The Kitchen is already 125% above capacity. When I asked why they didn't utilize a catering company I was told the expense was prohibitive. I wonder if all those folks that give 1000's of dollars to the hospital while sitting at fancy dinners know that are kids are reduced to fake mashed potatoes, premade toasted cheese sandwiches and canned corn. I don't ever want to hear what "the children like to eat". This is not Disneyland. They can not have a healthy life on Hot Dogs, Pizza, Mac and Cheese and breaded chicken stuff. Remember, this was the place that sponsored the Childhood Obesity Conference.
I am trying to practice my Buddhist philosophy which requires me to focus on this moment. At this moment I have very limited choices. True I can leave the hospital for every meal or bring in provisions or order in or eat from the cold cases of food brought in from various outside providers at a greater expense.
As he sees the situation he can't do much to institute much change. The hospital is sort of like the
Titanic and change does not happen without going through a huge and complicated process that requires many committee meetings. Chef presented as someone that had hit his head against that iceberg (maybe that explains the lettuce) way too many times.
So pretty much the answers were:
Can we order when she is hungry?
No, we cannot do that we don't have the staff, the space, the budget and the general support.
Can we get something other than chicken legs? Children like chicken legs. But do the other patients like the teenagers and young adults? No answer.
Can you order and reheat better food for the cafeteria?
Everyone likes the food in the cafeteria. You might like Tomato Bisque but everyone else wants Campbell's Tomato. Everyone likes iceberg lettuce. The hospital is not the food police and if they like deep fried batters green beans let them eat grease. We feed a huge variety of cultures like Hispanic and Somalis. (I know my former husband from Mexico would not go near any of that food and resort to a hamburger out of desperation).
Can we do something to feed the kids on the hem/onc floor on a kid by kid basis?
Yes they can call the day before and tell us what they want to eat the next day and then we will deliver it at 8, 12, and 5.
What if they are hungry at 3 am? Can we call the kitchen and get food?
No, the nurses have peanut butter, crackers, juice, Popsicles, mac and cheese. What if they want teriyaki chicken...... no answer.
Are you aware that no one is awake on the Hem/Onc floor until 10 am and most all of the breakfasts go to waste.
We delivery trays according to when the nursing staff asks.
Round and round, head banging..........
Could we have some sort of on floor cart everyday that let the kids have toasted bagels, juice, fresh cut up fruit?
I don't know but I will look into it.
Could food be delivered in small boxes and not having hot food covered by plastic wrap?
Sure, I will look into that.
So what did I take away from the meeting.
Well NO is the most popular answer. WAIT it will better. SORRY this is so hard for you.
TO DO LIST:
THE KIDS
It is not just hard for me but for the other parents and caregivers that have to leave and bring food and buy food. This is hard for the parents that have to be here. Yes, I want to be able to stay if I need to and eat here, three HEALTHY meals a day. I want my daughter and all the hem/onc children to have access to what they want to eat when they want to eat it. They just have to have that. Every day 24 hours a day. No questions asked. This institution has to, must, do what ever it takes to make it happen. It is not a someday, we are working on it, we will get there, soon issue. It needs to happen NOW
The teenagers need to meet with the Chef for a chat on what they want to be offered. He could come to the floor, bring something special for them to try and get their suggestions. I think he would find a group excited to be talked to... this Generation was raised on Food Channel. They would think it was soo sooo cool.
THE CAFETERIA
Some suggestions that take no more room or staff.
1. Whole Wheat buns
2. Alternates to onlybeef hot dogs since this is offered 3 times a week
3. Higher Quality Lettuce and better choices of food. Way too many calories and not enough protein. I want calorie counts posted.
4. Real Mash Potatoes (I know they come pre-cooked)
5. Good Roasted veggies on each hot bar, not just broccoli on Hot Potato Bar
6. Veggie burgers at the grill
7. Tomato Bisque, Italian Wedding Soup, Curried pumpkin.
THE PLAN
Seems to me I am going to have to talk with some budget and finance people. I am calling the head of dietary today. I need to have an idea why anyone thought it was a good idea to cut corners on kitchen staff need and food for the kids. Happy to see that the hospital and Children's is addressing Obesity while offering awful food.
I think it is short sighted to serve unhealthy fried food and blame the consumers. People eat good food when it is available. They eat what they have to when it is not. There is a whole program at the Odess Brown Clinic to teach children good choices. I wonder if they ever come here.
Hey, I am no shrinking violet. I have eaten my share of junk food. I eat healthy food when I can and have even given up fast food for lent on many occasions. The cafeteria offers the worst of fast food. High calorie, low nutrition. It needs to be better and I know it can be better.
Oh when I asked the Chef why we couldn't have satsumas, he did not say "no" and wrote it down. I am hopeful.
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