I took her in and they gave her two liters of fluid. Amazingly she was able to eat a PB&J. It evidently goes likes this: If you are dehydrated, you get nauseated and then you cannot eat or drink and you get more nauseated and then you cannot eat or drink and then when you do finally try, you throw up and then you cannot eat or drink.
I didn't wait for a serious crash. I took her in for a "bolus of saline". The plan was to be there by 10:00, out by noon and then to school. Oh, yes there is that time vortext hospital thing that confounds me every time. I am evidently a very slow learner.
We arrived. Vitals. She is almost down 30 pounds. Her heart rate was 123. They drew her blood and she got hooked up to the fueling station. Drip, Drip, Drip...............750 drips a minutes for 9 million minutes. Within 30 minutes, she was starting to look more herself. Hydration is such an under rated concept. I figured we were almost out of there and then the test results came back.
ANC 160 down from 588. Conclusion:the chemo is working. Result: No school. She had been there for only a few hours on Wednesday and was more than ready to go back. Friday is a dance and she was sent the perfect Faux Rabbit Vest and has new portable hair and ........Can you just hear the heart breaking?????????????????????????
My stoic little girl just said, "But Mom that is just not fair!!!!! " No arguments, no complaints just a short poinent sad statement.
They then set me up to "administer infusion therapy" at home. We came home with half of the Pacific Ocean (Saline) for the refridgerator and a friend for my now much beloved BlueBerry (I have chosen to call mine a BlueBerry. It is Blue and everyone needs to know that it is stupid to call it a BlackBerry by the way.) The new friend is $4000.00 handheld IV pump. It is very cute. Lots of buttons and the ability to beep at a whim for many strange and yet to be understood reasons. It came with tubes and white syringes and lots and lots of instructions.
You can not believe how happy it made Mary-Elizabeth to go to bed with a small beeping thing and a liter of saline. I tried to disconnect her a few minutes before it was done at six this morning and she would not let me. Every bit of fluid went into her PIIC line. I seem to learn a new thing or two each day.
Well I have to do some constructive work and pick up the house. The house fairies are not being cooperative. Stuff seems to remain in the same spot where I left it. Imagine that being the case.
Oh, here is something to ponder. We have two Katsura trees in the front of the house. One turned and lost its leaves about three weeks ago. The other waited almost two weeks to turn and has finally decided to drop its leaves. The thing that is curious is that the Slow Dropper is also budding out as if it is Spring. I guess over achieving is every where.
Friday, October 22, 2004
Thursday, October 21, 2004
I Think She is Becoming An IV Addict
She won't drink or eat. This is a new twist in this ever changing tale. I think she wants to go to the hospital and have some IV fluids. That may sound like a weird thing to want but then what has been normal during the past two months. She loves how she feels when her body is fully hydrated and they love to hydrate at the hospital. They love to measure what goes in and what goes out.
Everything tastes bad to her. We have tried almost every kind of bottled water, tap water with ice, and without. I put some fresh squeezed lemon in cold water, no go. Tea, fruit, peppermint, regular. Juices, apple, orange, mixed. Milk, regular and chocolate. For the first time in her life she has been told she can unlimited non-caffeinated pop and she does not even want that. She has been drinking a bit of orange juice but then not enough to keep a gnat hydrated. She has that stubborn steak that she gets from her father and she wants 1500 units of D5 saline and she is bound and determined to get it.
She feels so much better when the fluids are moving. No need to taste, no need to worry about spilling, no worry about drinking at the right time or any given amount. The IV is akin to breathing. They change the bags when they are empty. It is just a cake walk. I wonder if there is a support group for those addicted to IV FLUIDS. I guess I am going to have to address the issue today.
Everything tastes bad to her. We have tried almost every kind of bottled water, tap water with ice, and without. I put some fresh squeezed lemon in cold water, no go. Tea, fruit, peppermint, regular. Juices, apple, orange, mixed. Milk, regular and chocolate. For the first time in her life she has been told she can unlimited non-caffeinated pop and she does not even want that. She has been drinking a bit of orange juice but then not enough to keep a gnat hydrated. She has that stubborn steak that she gets from her father and she wants 1500 units of D5 saline and she is bound and determined to get it.
She feels so much better when the fluids are moving. No need to taste, no need to worry about spilling, no worry about drinking at the right time or any given amount. The IV is akin to breathing. They change the bags when they are empty. It is just a cake walk. I wonder if there is a support group for those addicted to IV FLUIDS. I guess I am going to have to address the issue today.
Wednesday, October 20, 2004
She has Become Sleeping Beauty
It is so odd. She is sleeping almost 20 hours a day. My bright, active and very interactive child has gone somewhere. No matter what I do I can not find her. She has withdrawn into her cave, bright pink of course, and I don't know when she might re-emerge. I don't know if I am not being hard enough on her or if I am being unrealistic about what she should be able to do.
See! we always return to the guessing game: Everyone is different, No one really knows, You just have to wait and see, Nothing is certain, Time will Tell. I hate all of those phrases. What do they call those? Platitudes.
Well I have work to do at home and the set up is almost 100%. I may try and hook up a printer today but then, Every one is different.
See! we always return to the guessing game: Everyone is different, No one really knows, You just have to wait and see, Nothing is certain, Time will Tell. I hate all of those phrases. What do they call those? Platitudes.
Well I have work to do at home and the set up is almost 100%. I may try and hook up a printer today but then, Every one is different.
Tuesday, October 19, 2004
Her Bone Marrow is Bouncing Back
After reaching all time lows on Friday of last week, her bone marrow is back working. It sort of goes like this:
1. M-E's over achieving bone marrow produced too many white blood cells in an attempt to keep up and surpass all the other bone marrow in the class. (This is akin to padding of high school applications. Lots of that is about to begin in ernest among the 7th grade class.)
2. To curtail over achieving, strong toxic chemicals are dumped into the body to teach the bone marrow more reality based cell production. The treatment does its job because the dumpers have lots of experience. They understand what is going on and can bring a halt to the marrows bad behavior. ( People that review high school applications know that a potential 9th grader does not: play 9 instruments at concert performance level, speak and write 22 languages including Matueati, volunteer at 12 soup kitchens and knit bandages for the war in Iraq.)
3. Once the dumping is finished, the bone marrow is given a rest to see if it has learned to behave. Like all overachievers, the bone marrow believes that no one is watching and begins to work again. It starts slowly at first but then gets reved up. If left alone, it will return to it's bad over achieving behavior. (When the 7th graders begin to have nightmares and ulcers, they enter much needed stress therapy but only after dropping one of three "traveling team sports" to clean a few moments a weeks for therapy and the required 2.3 hours of sleep recommended by the Educational Consultant. )
4. Once good production begins and heads back to normal, the process is repeated several more times. More Chemicals, more non-production of cells to be followed by normal production. ( Speech, tennis and how to sleep while walking between class lessons are added for more rounded presentation.)
Bottom line: Hopefully somewhere along the way we get it right. The Bone marrow decides to just be normal. Because we all know normal might be good after all.
1. M-E's over achieving bone marrow produced too many white blood cells in an attempt to keep up and surpass all the other bone marrow in the class. (This is akin to padding of high school applications. Lots of that is about to begin in ernest among the 7th grade class.)
2. To curtail over achieving, strong toxic chemicals are dumped into the body to teach the bone marrow more reality based cell production. The treatment does its job because the dumpers have lots of experience. They understand what is going on and can bring a halt to the marrows bad behavior. ( People that review high school applications know that a potential 9th grader does not: play 9 instruments at concert performance level, speak and write 22 languages including Matueati, volunteer at 12 soup kitchens and knit bandages for the war in Iraq.)
3. Once the dumping is finished, the bone marrow is given a rest to see if it has learned to behave. Like all overachievers, the bone marrow believes that no one is watching and begins to work again. It starts slowly at first but then gets reved up. If left alone, it will return to it's bad over achieving behavior. (When the 7th graders begin to have nightmares and ulcers, they enter much needed stress therapy but only after dropping one of three "traveling team sports" to clean a few moments a weeks for therapy and the required 2.3 hours of sleep recommended by the Educational Consultant. )
4. Once good production begins and heads back to normal, the process is repeated several more times. More Chemicals, more non-production of cells to be followed by normal production. ( Speech, tennis and how to sleep while walking between class lessons are added for more rounded presentation.)
Bottom line: Hopefully somewhere along the way we get it right. The Bone marrow decides to just be normal. Because we all know normal might be good after all.
Sunday, October 17, 2004
It is Fall and the Hair is Falling
I never realized how attached I was to her hair. She has never been bald before. She came screaming into this world with a full head and it is has been only growing and more beautiful every year. Johnny took over hair duty several years ago. Jerry Tapia, our long time hair dresser, knows better than to cut it any way that can be detected less he incur the wrath of Yaya.
When the all diagnose was given, we didn't ask about the hair for a few days. Everyone assured us it was doomed. The Chemo kills " rapidly dividing cells" hair, white blood cells, red blood cells, cells that line your intestinal tract and sperm cells if your male.
We have been indecisive on how to react. About two days after she was in the hospital, she had a roommate that has only a dozen or so strands of hair left. We all looked at Tamra and even M-E thought it was time to shave her head. We talked with Karyn, our beloved nurse practitioner, and she told us to wait. That was great advice. We did shorten the hair to her chin. It was cute and more manageable for a while.
It did start to go, first a few strand on the pillow, then a brush full and then the dust bunnies became much more like dust elephants. Hair was getting everywhere. She did manage to keep enough during radiation to protect her skin. A few days after the end of radiation, Jerry came and gave her a Mia Farrow cut. It was time. I snagged a piece. I have a piece from when she was a baby. It is dark and very brittle. It has been through a lot but then so has Mary-Elizabeth.
We went with Alison to the wig store and we bought a cute wig. She did not want her head shaved and is a bit reluctant about her hair. She is in such a deep quiet place right now that it is hard to tell what she is thinking but I am sure she is worried everyone will stare or make fun of her. That is a middle schooler in her. I think ridicule is their greatest fear and no amount of reassurance will relieve that apprehension.
She has always been a child that likes things to be the same. There is nothing that is the same. We are making progress but a weariness has set in on everyone. This should be the worst of it. On the 25th of October she has to be evaluated to see if she can start the next round of Chemo. I am much less anxious about starting this time. She has responded so well to the last round. There has been lots of destruction of cells, she may need some time to let her body repair itself.
I just have to say that the hair going has made me sad, so very very sad. Each small pile I find jolts me a bit. It is hard to deny what is happening when you see it go. This is real, this is not a bad dream. This is our reality. I guess we are a bit like the barometer in the hall, it has dropped lower than I have ever seen it but one thing we know is it does go backup after the storm passes. The storm and the rain and the tears will pass soon.
When the all diagnose was given, we didn't ask about the hair for a few days. Everyone assured us it was doomed. The Chemo kills " rapidly dividing cells" hair, white blood cells, red blood cells, cells that line your intestinal tract and sperm cells if your male.
We have been indecisive on how to react. About two days after she was in the hospital, she had a roommate that has only a dozen or so strands of hair left. We all looked at Tamra and even M-E thought it was time to shave her head. We talked with Karyn, our beloved nurse practitioner, and she told us to wait. That was great advice. We did shorten the hair to her chin. It was cute and more manageable for a while.
It did start to go, first a few strand on the pillow, then a brush full and then the dust bunnies became much more like dust elephants. Hair was getting everywhere. She did manage to keep enough during radiation to protect her skin. A few days after the end of radiation, Jerry came and gave her a Mia Farrow cut. It was time. I snagged a piece. I have a piece from when she was a baby. It is dark and very brittle. It has been through a lot but then so has Mary-Elizabeth.
We went with Alison to the wig store and we bought a cute wig. She did not want her head shaved and is a bit reluctant about her hair. She is in such a deep quiet place right now that it is hard to tell what she is thinking but I am sure she is worried everyone will stare or make fun of her. That is a middle schooler in her. I think ridicule is their greatest fear and no amount of reassurance will relieve that apprehension.
She has always been a child that likes things to be the same. There is nothing that is the same. We are making progress but a weariness has set in on everyone. This should be the worst of it. On the 25th of October she has to be evaluated to see if she can start the next round of Chemo. I am much less anxious about starting this time. She has responded so well to the last round. There has been lots of destruction of cells, she may need some time to let her body repair itself.
I just have to say that the hair going has made me sad, so very very sad. Each small pile I find jolts me a bit. It is hard to deny what is happening when you see it go. This is real, this is not a bad dream. This is our reality. I guess we are a bit like the barometer in the hall, it has dropped lower than I have ever seen it but one thing we know is it does go backup after the storm passes. The storm and the rain and the tears will pass soon.
Saturday, October 16, 2004
I am Thankful to Be a Family Law Attorney in Seattle.
I have been a family lawyer for almost 18 years. I always figured that I was serving my term in purgatory while on earth. When I left law school and headed to the big city, I proclaimed in a loud and haughty voice: "I don’t know what I am going to do but it won’t be family law." God has a strange sense of humor.
Over the years, I have struggled with my profession as a lawyer. I have whined and complained. I have bemoaned the fact I can not seem to find another profession or as Oprah preaches " To find my true calling". I have even stopped practicing for a year only to find my way back into the "life".
Until recently, I really was disgruntled on many days I was in the office. I like to work so it was hard for me not love every moment I was working. It took me a while to identify was so distasteful about being a family lawyer. I finally figured out that I did not like using my skills and expertise to be mean to other people. I also hate to disappoint those around me. My clients always had the aura of despair around them and I always felt I never really did get then enough. Clients seem to imbue their attorneys with the ability to change the past and make things right. No matter how hard I have tried, I can not ever really make the pain of a lost marriage and broken family go away. I simply don’t have super human powers.
God has a sense of humor and events of the recent weeks have made me finally love and be thankful for my profession. On August 14, 2004 I had a life changing moment. (Oprah would have been proud.) I received the news that my lovely, sweet, intelligent, loving daughter had High Risk Acute Lymposytic Leukemia with Central Nervous System involvement. She is facing a 2.5 year treatment protocol. The first year is very intense. I have spent literally weeks at the hospital for her many chemo and radiation treatments. (I am glad to report she is in remission and her chances for full recovery are very high.)
This unwelcomed news gave me an entire new perspective on my profession. I soon discovered that lawyers, judges and clients are the best! The first day I was able to back in the office I realized how good it was to be able to do what I do. I can actually effectuate change in people’s lives. If feels good to work with other people’s problems.
I am so thankful to have clients that asked me how M-E is doing before they explained their current dilemma. What a relief to have Judges that granted changes of case assignment areas and continuances with understanding. I can not begin to thank and be thankful enough for my opposing counsel in my cases and my former opponents for their curtsey, understanding, flexibility and cooperation. Their offers of help often brings me to tears.
I am so thankful to have a profession that lets me work from home. I am thankful to be part of a firm that fully supports my need to bill less and be with my daughter more. I am thankful to have such great colleagues and professionals to work with every day.
I am very thankful to be a Family Lawyer in Seattle.
Sally A. Lanham, Mikkelborg, Broz, Wells and Fryer
Over the years, I have struggled with my profession as a lawyer. I have whined and complained. I have bemoaned the fact I can not seem to find another profession or as Oprah preaches " To find my true calling". I have even stopped practicing for a year only to find my way back into the "life".
Until recently, I really was disgruntled on many days I was in the office. I like to work so it was hard for me not love every moment I was working. It took me a while to identify was so distasteful about being a family lawyer. I finally figured out that I did not like using my skills and expertise to be mean to other people. I also hate to disappoint those around me. My clients always had the aura of despair around them and I always felt I never really did get then enough. Clients seem to imbue their attorneys with the ability to change the past and make things right. No matter how hard I have tried, I can not ever really make the pain of a lost marriage and broken family go away. I simply don’t have super human powers.
God has a sense of humor and events of the recent weeks have made me finally love and be thankful for my profession. On August 14, 2004 I had a life changing moment. (Oprah would have been proud.) I received the news that my lovely, sweet, intelligent, loving daughter had High Risk Acute Lymposytic Leukemia with Central Nervous System involvement. She is facing a 2.5 year treatment protocol. The first year is very intense. I have spent literally weeks at the hospital for her many chemo and radiation treatments. (I am glad to report she is in remission and her chances for full recovery are very high.)
This unwelcomed news gave me an entire new perspective on my profession. I soon discovered that lawyers, judges and clients are the best! The first day I was able to back in the office I realized how good it was to be able to do what I do. I can actually effectuate change in people’s lives. If feels good to work with other people’s problems.
I am so thankful to have clients that asked me how M-E is doing before they explained their current dilemma. What a relief to have Judges that granted changes of case assignment areas and continuances with understanding. I can not begin to thank and be thankful enough for my opposing counsel in my cases and my former opponents for their curtsey, understanding, flexibility and cooperation. Their offers of help often brings me to tears.
I am so thankful to have a profession that lets me work from home. I am thankful to be part of a firm that fully supports my need to bill less and be with my daughter more. I am thankful to have such great colleagues and professionals to work with every day.
I am very thankful to be a Family Lawyer in Seattle.
Sally A. Lanham, Mikkelborg, Broz, Wells and Fryer
Thursday, October 14, 2004
We have known for two months.
I was very testy yesterday. Mary-Elizabeth has shown signs of regression over the past few weeks. She needs much more of what she used to call "Mommy Time". She needs more of my attention than I realize. It is more of an attention thing. She is very inwardly focused and very quiet much of the time. She is concentrating on healing and managing the daily assault of treatments. She needs me to be with her and just hold her. I realize that this quiet time is a gift. Most 12 year olds are pulling away from all parental contact.
I am acting like a petulant 3 year old if everything does not go my way. Flu shot refusals sent me into hysterics. I love the Swedish Medical Clinic in our office. "We don't care if you need the shot. You are not our patient. You should get it from your doctor." I now understand the panic felt by an addict. "But I need it!!!!!!!!!!!!!!!!" I made a typo in a letter I was trying to get out after hours last night and I was in tears about being a bad typist. At that point I was more of tired 3 year old. Maybe this will keep me young. Do you think it is bad that I want CoCo Puffs for breakfast.
Two months. It so feels like a lifetime. The memories of normal are fading rapidly. Yesterday we had the "X-Ray to look for the possible blood clot in the lung" fun. (She is okay). I see normal and know it is out there. I see people on the way to work, upset that they have to go. I want to shake them and tell them to enjoy each and every moment they can go to work without having to manage a health crisis at the same time. I see a mother storm out of a restaurant angry that her beautiful 10 year old daughter does not use chop sticks correctly. I see father's that don't spend every possible minute with their children that they can not knowing what it is like when a simple cold can keep them away.
We are at a very dicy time right now. After the last round of treatment her system is still crashing. ANC : Monday 288, Wednesday 150, normal 4000. Her White Blood Cells are less than 500: Normal 10,000. Her bone marrow will start to recover soon. The doctors are happy but also worried. Low counts mean the treatment is working. Low counts mean she is in the danger zone for nasty infections. No wonder I am going crazy. Nothing is what it should be.
Well I am going to work and trying to do some good in the world. I will get through the piles and will make sense of some things. I will not loose it today. I will find something to smile about. I will continue to try and remember this is only a phase and it too will pass. We are at day 25 of 63 of Consolidation.
Pray for me and everyone I deal with today. Two months, 28 more to go.
I am acting like a petulant 3 year old if everything does not go my way. Flu shot refusals sent me into hysterics. I love the Swedish Medical Clinic in our office. "We don't care if you need the shot. You are not our patient. You should get it from your doctor." I now understand the panic felt by an addict. "But I need it!!!!!!!!!!!!!!!!" I made a typo in a letter I was trying to get out after hours last night and I was in tears about being a bad typist. At that point I was more of tired 3 year old. Maybe this will keep me young. Do you think it is bad that I want CoCo Puffs for breakfast.
Two months. It so feels like a lifetime. The memories of normal are fading rapidly. Yesterday we had the "X-Ray to look for the possible blood clot in the lung" fun. (She is okay). I see normal and know it is out there. I see people on the way to work, upset that they have to go. I want to shake them and tell them to enjoy each and every moment they can go to work without having to manage a health crisis at the same time. I see a mother storm out of a restaurant angry that her beautiful 10 year old daughter does not use chop sticks correctly. I see father's that don't spend every possible minute with their children that they can not knowing what it is like when a simple cold can keep them away.
We are at a very dicy time right now. After the last round of treatment her system is still crashing. ANC : Monday 288, Wednesday 150, normal 4000. Her White Blood Cells are less than 500: Normal 10,000. Her bone marrow will start to recover soon. The doctors are happy but also worried. Low counts mean the treatment is working. Low counts mean she is in the danger zone for nasty infections. No wonder I am going crazy. Nothing is what it should be.
Well I am going to work and trying to do some good in the world. I will get through the piles and will make sense of some things. I will not loose it today. I will find something to smile about. I will continue to try and remember this is only a phase and it too will pass. We are at day 25 of 63 of Consolidation.
Pray for me and everyone I deal with today. Two months, 28 more to go.
Monday, October 11, 2004
They Came at Her Like a Swarm of Bees
We went the Children's for what I thought was a simple shot and some IV Chemo. I had become complacent. Everything has been going so well. We have not had any surprises. I figured we had this phase handled. After 14 doses of oral chemo, 12 doses of radiation and 9 doses of IV chemo, how bad could it be. She is feeling much much better. She even has color now that she had her three pints.
Well, just when you think you have it figured out you go to Clinic. Today was not a great day for anyone. Things were not going well at the front desk. The computer was not happy. First thing we learned was that 15 families have been moved out of the Ronald McDonald House. All the rooms were marked with orange isolation signs. There is an outbreak of Chicken Pox. Chicken pox is very very bad for people with compromised immune systems. I think they feel like it is the 11th century and the cats have been killed and the rats with the fleas are out of control.
We saw Karyn our Nurse Practioner ( never let anyone but one of these people do your spinal tap chemos). She gave us bad numbers but after examining M-E said school for a couple of days would be okay since she looked great.
I really needed M-E's shot needed to be done by Noon. They forgot to tell us that it was really three shots. Mom can do lots and lots of stuff but M-E needs her mom for shots.
Shots are dreaded more than many many things. These kids have so many procedures and so much that makes them miseralbe The last straw seems to be shots. The kids are getting flu shots and the screams are amazing. They had to hold down a 9 year old. The look on those nurses faces when they headed behind that curtain was very frightening. Then the screaming was began.
We knew Mary-Elizabeth had to have a shot today. We did not know that she had to have three big shots at the same time. Three big needles attached to huge syringes. It looked more like they were basting her than treating her. The nurses all came into the room armed. I looked away and they counted. One, two three....... And then she squoozed my hand very very hard and said Ouch. That was it. No screams and I did not faint.
All in all it was a good day except for the attach of the killer bees. M-E felt she deserved something for having three shots in one day. I suggested a pearl. I suggested we start to buy single pearls for each shot and by then end of this she would have a a strand. Oh, no, she does not want round pearls they are just too boring. She would like one of those really cool baroque pills.
I guess she will never be boring. She is truly a unique spirited.
Well, just when you think you have it figured out you go to Clinic. Today was not a great day for anyone. Things were not going well at the front desk. The computer was not happy. First thing we learned was that 15 families have been moved out of the Ronald McDonald House. All the rooms were marked with orange isolation signs. There is an outbreak of Chicken Pox. Chicken pox is very very bad for people with compromised immune systems. I think they feel like it is the 11th century and the cats have been killed and the rats with the fleas are out of control.
We saw Karyn our Nurse Practioner ( never let anyone but one of these people do your spinal tap chemos). She gave us bad numbers but after examining M-E said school for a couple of days would be okay since she looked great.
I really needed M-E's shot needed to be done by Noon. They forgot to tell us that it was really three shots. Mom can do lots and lots of stuff but M-E needs her mom for shots.
Shots are dreaded more than many many things. These kids have so many procedures and so much that makes them miseralbe The last straw seems to be shots. The kids are getting flu shots and the screams are amazing. They had to hold down a 9 year old. The look on those nurses faces when they headed behind that curtain was very frightening. Then the screaming was began.
We knew Mary-Elizabeth had to have a shot today. We did not know that she had to have three big shots at the same time. Three big needles attached to huge syringes. It looked more like they were basting her than treating her. The nurses all came into the room armed. I looked away and they counted. One, two three....... And then she squoozed my hand very very hard and said Ouch. That was it. No screams and I did not faint.
All in all it was a good day except for the attach of the killer bees. M-E felt she deserved something for having three shots in one day. I suggested a pearl. I suggested we start to buy single pearls for each shot and by then end of this she would have a a strand. Oh, no, she does not want round pearls they are just too boring. She would like one of those really cool baroque pills.
I guess she will never be boring. She is truly a unique spirited.
Sunday, October 10, 2004
WE HAVE SETTLED INTO THE SIEGE
Remember those old tales of sieges. A castle was attached for weeks and months and years. I often wondered if time was reported in the bible like 40 days and 40 nights. God could not just say that it took a very very long time.
I realized yesterday that we are in the middle of a long seige. We have hunkered down for the winter and will enjoy moments. We are having some good moments. Whitney is here for the weekend. She was able to go to a party last night. A few of her friends got together for some movies for a birthday party. She was tired but happy. We have to have a few moments of fun.
M-E seemed to have weathered this first part of the Consolidation. She has done great. She has been nauseated most of the time and has lost about 5 pounds but will be hungry this morning. She did not have any of the liver problems associated with the Mercrapterprim. She never had a fever with Ara-C. She had a couple of head aches and was very tired but she did not suffer from any the obvious affects of the the radiation. My sister told me not to hit M-E on the head because I might be upset when I hear the sloshing in her skull. She has had some short term memory issues. I now have Dorey. (The Ellen Degeneris character in Finding Nemo)
Of course she and Mom are using "We cannot Remember" for lots of things. It goes like this: Did you brush your teeth? Oh, how can we remember to do that! They are very very bad.
She has only one scheduled appointment this week for the Clinic and we are going to see how much school she can handle.
We are in a waiting mode. Waiting for the troops outside to go home but we know that they are just waiting. Waiting for the opportunity to strike. We are prepared for the next strike.
I realized yesterday that we are in the middle of a long seige. We have hunkered down for the winter and will enjoy moments. We are having some good moments. Whitney is here for the weekend. She was able to go to a party last night. A few of her friends got together for some movies for a birthday party. She was tired but happy. We have to have a few moments of fun.
M-E seemed to have weathered this first part of the Consolidation. She has done great. She has been nauseated most of the time and has lost about 5 pounds but will be hungry this morning. She did not have any of the liver problems associated with the Mercrapterprim. She never had a fever with Ara-C. She had a couple of head aches and was very tired but she did not suffer from any the obvious affects of the the radiation. My sister told me not to hit M-E on the head because I might be upset when I hear the sloshing in her skull. She has had some short term memory issues. I now have Dorey. (The Ellen Degeneris character in Finding Nemo)
Of course she and Mom are using "We cannot Remember" for lots of things. It goes like this: Did you brush your teeth? Oh, how can we remember to do that! They are very very bad.
She has only one scheduled appointment this week for the Clinic and we are going to see how much school she can handle.
We are in a waiting mode. Waiting for the troops outside to go home but we know that they are just waiting. Waiting for the opportunity to strike. We are prepared for the next strike.
Friday, October 08, 2004
The Last Day of Radiation
Well, we are at the end of the first two weeks of Consolidation. At no time will regularly scheduled treatment be so grueling. 12 radiation treatments, 9 doses of Chemo IV, one dose of IT treatment ( Spinal Chemo) 14 doses of oral chemo. Now we wait and see. What we have seen so far has been remarkable. She seems to be tolerating the treatment. She has had some complaints, Mump like symptoms, head aches, nausea and the hair is going, and going and well more on that later. She has needed 3 pints but it perked her right up. Unless her number crash she will be back in school on Tuesday.
She never complains except about brushing her teeth. We have been arm wrestling about that. She let me know today that the toothpaste tastes icky. Smells are becoming more of a problem. This too will pass.
My new assitant Dawn made a great suggestion. Give blood. M-E really really benefited from it. Also everyone needs to get on to the Bone marrow registery.
She never complains except about brushing her teeth. We have been arm wrestling about that. She let me know today that the toothpaste tastes icky. Smells are becoming more of a problem. This too will pass.
My new assitant Dawn made a great suggestion. Give blood. M-E really really benefited from it. Also everyone needs to get on to the Bone marrow registery.
Wednesday, October 06, 2004
Mrs. Jones Loved the Jelly
I love my mom. She is the greatest. She is thoughtful to the Nth degree. She is a bit weird and we worry about her. She does stuff like cut my trees to watch the girls across the street when they move in. She can tell you a lot about their behaviour. She makes sure I go to bed when she is tired and if you call and ask what you can do she will tell you to call back in six months. She is just like that. She doesn't make M-E do her Lovenox shots all the time but will force feed you vitamin C on a whim. She let's Mary-Elizabeth be on computer way to much, complaines about how bad it is for her and then tells me I can not complain about how bad the computer is for kids.
She has taken M-E to her appointments most of these last couple of weeks. Radiation evidently is given to many people over a period of time. They keep running into the same people all the time. Mrs. Jones is an older black women that comes every day for some type of radiation. We won't ever know for what or the outcome but radiation can never be good. She has had some problems with burns and been uncomfortable but has always had a good attitude, a smile for everyone and some words of encouragement. Mom took her some jelly today. Sour things taste good and Mom made her day. I love our Mom.
She has taken M-E to her appointments most of these last couple of weeks. Radiation evidently is given to many people over a period of time. They keep running into the same people all the time. Mrs. Jones is an older black women that comes every day for some type of radiation. We won't ever know for what or the outcome but radiation can never be good. She has had some problems with burns and been uncomfortable but has always had a good attitude, a smile for everyone and some words of encouragement. Mom took her some jelly today. Sour things taste good and Mom made her day. I love our Mom.
Tuesday, October 05, 2004
She is off to the Re-Fueling Station
Well, the Doctor's were tickled. Things like low blood counts make them giddy. It let's them know that the treatment is working. M-E and my mom are off the Hem/Onc clinic for her first blood transfusion. Everyone says she will feel like taking on the world after she gets someone else's healthy red blood cells.
She is such a trooper. She does not complain. Her biggest complaint is that I keep trying to get some food into her.
As a species we must have such a deeply rooted survival instinct. Never does she complain about treatment or any of the side affects. She just does this day after day and has a positive attitude. We see lots of kids every time we go. The only ones that seem to be a problem are the 5-6 year old boys. They can pitch a fit that makes Mt. St. Helen look calm. The boys seem to have been abandoned by their mothers and lots of father's bring them to clinic.
Mom is trying to put up inside Christmas lights. M-E is resisting at this point. I know my mother. The Marys in this family set their jaws and do what they want to do and don't let much get in their way. I will let you know when the lights go up.
Now I know where M-E gets her strength. She comes from a long line of surviving Marys.
She is such a trooper. She does not complain. Her biggest complaint is that I keep trying to get some food into her.
As a species we must have such a deeply rooted survival instinct. Never does she complain about treatment or any of the side affects. She just does this day after day and has a positive attitude. We see lots of kids every time we go. The only ones that seem to be a problem are the 5-6 year old boys. They can pitch a fit that makes Mt. St. Helen look calm. The boys seem to have been abandoned by their mothers and lots of father's bring them to clinic.
Mom is trying to put up inside Christmas lights. M-E is resisting at this point. I know my mother. The Marys in this family set their jaws and do what they want to do and don't let much get in their way. I will let you know when the lights go up.
Now I know where M-E gets her strength. She comes from a long line of surviving Marys.
Sunday, October 03, 2004
The Magma may be Coming
They are waiting to see what will appear today at Mt. Saint Helens. I am curious and very interested in all of that. Of course I am one of those that wonders why they don't know more. Why they have not figured out a better way to determine if the lava is going to flow? Why are there so many questions left unanswered?
The fact is there is very little we really know. We know there are hurricane's. We don't know where they are going to go or how much damage they are going to do. We know there are erupting volcanoes but we don't really know when or how much they are going to erupt. We know M-E has luchmia but we don't know if it is really gone or when or if it will come back. I hate uncertainty but then that might be the only certainty we have.
I am bothered by all the reminders that relapse can happen with the disease. We are in this early part of the treatment and are just trying to get through the early phases. One day, one appointment, one shot at a time. I very seldom let myself look more than a couple of weeks ahead.
The first week out of the hospital, I ran into someone I knew. Her daughter is 8. She relapsed just after going into the maintence phase of treatment. ( We don't reach that for another 10 month.) Our most recent 5 year old roommate relapsed just after finishing her two years treatment. I wonder if these people are in my path to let me get ready for the fact this part of our lives will never end or if it is to remind me that we are very lucky and I should just count my blessings. My attitude and choice of messages is very much dependent on my stress level. It is Sunday and I am at work and I am beyond stressed about work and getting everything done. I know that getting everything done is not possible. I think I need to give myself a break but then I am not very good at being easy on myself.
The getting everything done comes from my father. He is the voice that let's me know I need to work harder and bill more hours. He is the one that believes long hard hours of nose to the grindstone is the answer. If we follow the protocol things will work out. Mother gave me the gift of the "worry zone" . Things are either in the zone or not. If they are not in the zone you don't worry. If they are in the zone, you take positive steps and fix it. Never do you dwell and worry needlessly. She told me this morning that I should not worry about the dream where the lava was all over and I had to break my windows and crawl out of the bedroom to get away from it.
Translation: I should not worry about Mt. Saint Helens or a relapse. I should get to work and bill more hours.
The fact is there is very little we really know. We know there are hurricane's. We don't know where they are going to go or how much damage they are going to do. We know there are erupting volcanoes but we don't really know when or how much they are going to erupt. We know M-E has luchmia but we don't know if it is really gone or when or if it will come back. I hate uncertainty but then that might be the only certainty we have.
I am bothered by all the reminders that relapse can happen with the disease. We are in this early part of the treatment and are just trying to get through the early phases. One day, one appointment, one shot at a time. I very seldom let myself look more than a couple of weeks ahead.
The first week out of the hospital, I ran into someone I knew. Her daughter is 8. She relapsed just after going into the maintence phase of treatment. ( We don't reach that for another 10 month.) Our most recent 5 year old roommate relapsed just after finishing her two years treatment. I wonder if these people are in my path to let me get ready for the fact this part of our lives will never end or if it is to remind me that we are very lucky and I should just count my blessings. My attitude and choice of messages is very much dependent on my stress level. It is Sunday and I am at work and I am beyond stressed about work and getting everything done. I know that getting everything done is not possible. I think I need to give myself a break but then I am not very good at being easy on myself.
The getting everything done comes from my father. He is the voice that let's me know I need to work harder and bill more hours. He is the one that believes long hard hours of nose to the grindstone is the answer. If we follow the protocol things will work out. Mother gave me the gift of the "worry zone" . Things are either in the zone or not. If they are not in the zone you don't worry. If they are in the zone, you take positive steps and fix it. Never do you dwell and worry needlessly. She told me this morning that I should not worry about the dream where the lava was all over and I had to break my windows and crawl out of the bedroom to get away from it.
Translation: I should not worry about Mt. Saint Helens or a relapse. I should get to work and bill more hours.
Saturday, October 02, 2004
We are done with week one.
WE are done with week one of Consolidation. 7 doses of radiation. 4 doses of ARA-C. One dose of Cytoxon, 7 doses of Mercraptaprin (my spelling) and a lot of other stuff. She is up and doing homework. She is remarkably resilient. She has a good attitude and a great spirit.
She is getting more and more tired. Her color is fading and the hair is going. Each and every treatment is like a knife into my heart. The pain I feel is so real. Every time she gives herself a shot, I simply turn away becasuse I can not stand to watch it.
As Mom's we are simply hard wired to protect our children. In the very beginning God knew we, the mother's, had the ability to keep the children safe and make sure the species survived. I know that each and every treatment is necessary. I know that we have to go through the whole process. I know that we are going to beat this thing but the process is so arduous...... I just try to have a good attitude and thank God that we don't live in another time. I remember the part of the "Year of Wonder" where the step-mother tried to comfort the mother whose two young children had died of plague. The stepmother says " I told you not to get attached to them until they are three years old." We are very lucky that my biggest complaint is that the treatment is difficult. We do have treatment, lots of great friends and Sunshine!
Mom is here for a couple of weeks. It is such a great help. Dad took the train from hell to Eugene. He did not get home until 9:00 pm. He reports that you meet interesting people on the train.
She is getting more and more tired. Her color is fading and the hair is going. Each and every treatment is like a knife into my heart. The pain I feel is so real. Every time she gives herself a shot, I simply turn away becasuse I can not stand to watch it.
As Mom's we are simply hard wired to protect our children. In the very beginning God knew we, the mother's, had the ability to keep the children safe and make sure the species survived. I know that each and every treatment is necessary. I know that we have to go through the whole process. I know that we are going to beat this thing but the process is so arduous...... I just try to have a good attitude and thank God that we don't live in another time. I remember the part of the "Year of Wonder" where the step-mother tried to comfort the mother whose two young children had died of plague. The stepmother says " I told you not to get attached to them until they are three years old." We are very lucky that my biggest complaint is that the treatment is difficult. We do have treatment, lots of great friends and Sunshine!
Mom is here for a couple of weeks. It is such a great help. Dad took the train from hell to Eugene. He did not get home until 9:00 pm. He reports that you meet interesting people on the train.
Wednesday, September 29, 2004
Radiation is Not M-E's Friends
You know all my worries about giving M-E things like Oxecodone for pain and Reglan for nausia? I now have the recipe for Vicodine. That would be 10 miligrams of Oxecodone and 1 gram of Tylenol. She is also taking 3 Zofran a day. Oh, well it was like when I had Mary-Elizabeth, I said no IV's . That lasted about 9 minutes. My tolorence for her pain is non-existant in the real world.
The problem is we don't know what is causing what. Does she have a headache because she had to be poked twice in her spine or was if from the spinal radiation? Does she have a head ache because she has not eaten anything for more than 24 hours? Are the chemo and the radiation causing the upset stomach or is it because she is taking medicine on an almost empty stomach? Is her back hurting from the back poke or the radiation or because she has been in bed since Sunday? When do I panic and ask we go back to the hospital for IV morphine for me?
Okay, I will have another cup of coffee and continue to watch the Mt. St. Helen's Web Cam. Foggy and gray last time I looked.
Day two of three of Spinal Radiation
Day two of nine of Crainal Radiation
The problem is we don't know what is causing what. Does she have a headache because she had to be poked twice in her spine or was if from the spinal radiation? Does she have a head ache because she has not eaten anything for more than 24 hours? Are the chemo and the radiation causing the upset stomach or is it because she is taking medicine on an almost empty stomach? Is her back hurting from the back poke or the radiation or because she has been in bed since Sunday? When do I panic and ask we go back to the hospital for IV morphine for me?
Okay, I will have another cup of coffee and continue to watch the Mt. St. Helen's Web Cam. Foggy and gray last time I looked.
Day two of three of Spinal Radiation
Day two of nine of Crainal Radiation
Tuesday, September 28, 2004
Well, Radiation is a Trip and Very Scary for Me not M-E.
We did leave the hospital on Sunday. Back to clinic on Monday for a chemo treatment, back today for a Spinal Chemo, IV chemo and then on to University Hospital for her first radiation treatment. Oh, I was not ready. I had been there before but I did not go in with her for the simulation. I insisted on going in this time.
We took her into a huge room filled with weird equipment. I saw them position her on the table, her face in a mask. Then they made me leave. They did some things and then they left and a huge 12 inch thick door slowly closed. If you were wondering, it take 48 seconds for the door to close and to open. They they played with some computers. Then a light came on over the door. It was on only 30 seconds. They repeated this process 2 more times with one treatment lasting a whole minute.
It brought me to tears. That deep sinking feeling of how serious and very scary this entire process is becoming. They are in there sending powerful rays into my sweet sweet daughter's skull and spine. She faces secondary brain tumors, cataracs and a host of other problems. Her pituitary gland might turn off, her vision might change her spinal cord could be damaged but we are doing this to her by choice because her other options of not doing the radiation are gruesome.
I was feeling better because we were moving ahead again. I was not going to have to be weirded out by the fear of not going after the rest of those bad cells. We have 8 more months of this intense stuff. I know we will survive but there will be more than the tatoos and Piic line scares left by this process.
Side affects: Ara-C makes her sleep like crazy. Exhaust fumes smell like burned English muffins and she wants her dad's salsa. So we shall see how the week goes.
We took her into a huge room filled with weird equipment. I saw them position her on the table, her face in a mask. Then they made me leave. They did some things and then they left and a huge 12 inch thick door slowly closed. If you were wondering, it take 48 seconds for the door to close and to open. They they played with some computers. Then a light came on over the door. It was on only 30 seconds. They repeated this process 2 more times with one treatment lasting a whole minute.
It brought me to tears. That deep sinking feeling of how serious and very scary this entire process is becoming. They are in there sending powerful rays into my sweet sweet daughter's skull and spine. She faces secondary brain tumors, cataracs and a host of other problems. Her pituitary gland might turn off, her vision might change her spinal cord could be damaged but we are doing this to her by choice because her other options of not doing the radiation are gruesome.
I was feeling better because we were moving ahead again. I was not going to have to be weirded out by the fear of not going after the rest of those bad cells. We have 8 more months of this intense stuff. I know we will survive but there will be more than the tatoos and Piic line scares left by this process.
Side affects: Ara-C makes her sleep like crazy. Exhaust fumes smell like burned English muffins and she wants her dad's salsa. So we shall see how the week goes.
Sunday, September 26, 2004
We Might be out of Here.
I have a cart ready and part of the packing done. We might be able to go home today. She made it through three does of her chemo in 12 hours. She survived a big dose of Lasix. Yes, she now understands the term: "Pees like a Race Horse" She was pretty busy for a couple of hours last night before bedtime. She is exhausted today and worried about school tomorrow but we will be home for a couple of days. She seems to bounce back but this is a lot to respond to in a very very short period of time.
I had a weird experience last night. Around 10:00 I was going to brush my teeth and walked by a room where there were lots of people and monitors and beepers going off. When I say lots, I mean there must have been 12 people in the room. Around 4 :00 am I was up using the same bathroom and the whole floor was empty. I did not see a single nurse. I went past the room and it was dark and the child's name tag was gone. I was very freaked by the silence and the emptiness of the floor. I did not go back to sleep for over an hour.
I finally summoned the courage to ask if they ever transferred kids from this floor somewhere else. I was told that the little boy had been transferred to ICU and was doing better.
Just add to my list: I don't want to have my child to be the attention of more than one nurse, an attending, a fellow, a resident or three, a medical student and nursing student at one time.
I had a weird experience last night. Around 10:00 I was going to brush my teeth and walked by a room where there were lots of people and monitors and beepers going off. When I say lots, I mean there must have been 12 people in the room. Around 4 :00 am I was up using the same bathroom and the whole floor was empty. I did not see a single nurse. I went past the room and it was dark and the child's name tag was gone. I was very freaked by the silence and the emptiness of the floor. I did not go back to sleep for over an hour.
I finally summoned the courage to ask if they ever transferred kids from this floor somewhere else. I was told that the little boy had been transferred to ICU and was doing better.
Just add to my list: I don't want to have my child to be the attention of more than one nurse, an attending, a fellow, a resident or three, a medical student and nursing student at one time.
Saturday, September 25, 2004
The coyote might be Headed West
On Wednesday of this week, my sister's secretary was late to work. Being late was unusual for her. She went to work but then around 10:30 in the morning she went to Belle and said :
I have to go see the Medicine Man.
Why?
A coyote ran across my path.
Oh? That's a problem?
Of course it is.
Belle let her go and she returned around noon.
So, how did it go?
It is going to be fine. The coyote was running West. No need for a Sing.
( A long involved healing ceremony.)
Translation, the world was not out of balance.
The Navajo is a culture based on balance. Nature and man must be in balance with each other. Most often man pulls himself out of balance with nature but sometimes events do. A Navaho would seek the help of the Medicine Man to restore the balance.
We have been out of balance. I now know I need to be looking for the wayward coyote in our neiborhood.
On Monday we came to clinic for an evaluation and to be admitted. We were packed and ready. M-E had great platelets and red blood cells. She had been very low on platelets last week. They thought that she would need a transfusion. Evidently her marrow heard that it had been dilatory and began over producing platelet's like crazy. It seems the marrow can produce two things at a time but cannot do three. Her ANC was way down. We were sent home.
I just knew I had failed some how. Did I not give her the right food? Did I not make sure she was in bed on time? Was it a mistake to let her spend the night with her best friend? Am I pushing too hard for school? Should we be doing some exercise? Except for needing more exercise, I did not doubt any of my decisions. What to do? Well, we needed to keep the Red Blood Cells going so we did the obvious and went to Outback for big meat.
24 hours later we were back at clinic. A quarter size bump that hurt like crazy had appeared. We went for a check. They gave her a for a huge dose of antibiotics and some horse pills and sent us home.
24 hours later we returned. Being from a family of high achievers, she had produced something that looked angry and kind of scary. Bad news: the red spot had doubled in size and we were admitted. The good news: M-E's ANC was high enough to start consolidation.
But then you can not begin Consolidation with an active undiagnosed, unresolved infection. So here we sit. Twice a day a dose of antibiotic is administered. The doctors come by and say, " Well........." And we wait. Watching an infected area grow and shrink is not a thrilling event but a necessary evil.
How do we get to the balance? I am beginning to wonder if this is a "bump" in the road to just make me really really want Consolidation to begin. I dreaded it so much and yet now want it to begin. I would hate to loose these moments of remission. I have been assured that we have some time. She would probably stay in remission for up to six months or maybe only six weeks. We are not willing to find out. I know that a relapse would be a very bad thing.
We don't have a Medicine Man readily available but something worked after 4 days in the hospital. It could have been a number of things. Maybe it is the world of prayers being said on M-E's behalf. Maybe I needed to leave the hospital for 16 hours and let nature take it's course. Maybe she needed some good energy from her dad who spent the night. She always sleeps better when he is here.
While I was gone, the news of the start of consolidation was released. We start in a couple of hours. Zofran and then the Cytoxin will go in over an hour and then an Ara-C IV push will be given. Then we wait. The IV drips. We wait. The hours tick and we wait. What will she do? What weird and unusual side affect will occur? We wait.
She is ready. I am more than ready. Mom is on her way and M-E has her Consolidation earrings. Blue topaz in the shape of Rain Drops. The jeweler told me they were tear drops but I don't want them to be tear drops. Rain Drops bring good things. We are counting on good things ahead.
Thanks for your prayers and watch out for non-West going coyotes.
I have to go see the Medicine Man.
Why?
A coyote ran across my path.
Oh? That's a problem?
Of course it is.
Belle let her go and she returned around noon.
So, how did it go?
It is going to be fine. The coyote was running West. No need for a Sing.
( A long involved healing ceremony.)
Translation, the world was not out of balance.
The Navajo is a culture based on balance. Nature and man must be in balance with each other. Most often man pulls himself out of balance with nature but sometimes events do. A Navaho would seek the help of the Medicine Man to restore the balance.
We have been out of balance. I now know I need to be looking for the wayward coyote in our neiborhood.
On Monday we came to clinic for an evaluation and to be admitted. We were packed and ready. M-E had great platelets and red blood cells. She had been very low on platelets last week. They thought that she would need a transfusion. Evidently her marrow heard that it had been dilatory and began over producing platelet's like crazy. It seems the marrow can produce two things at a time but cannot do three. Her ANC was way down. We were sent home.
I just knew I had failed some how. Did I not give her the right food? Did I not make sure she was in bed on time? Was it a mistake to let her spend the night with her best friend? Am I pushing too hard for school? Should we be doing some exercise? Except for needing more exercise, I did not doubt any of my decisions. What to do? Well, we needed to keep the Red Blood Cells going so we did the obvious and went to Outback for big meat.
24 hours later we were back at clinic. A quarter size bump that hurt like crazy had appeared. We went for a check. They gave her a for a huge dose of antibiotics and some horse pills and sent us home.
24 hours later we returned. Being from a family of high achievers, she had produced something that looked angry and kind of scary. Bad news: the red spot had doubled in size and we were admitted. The good news: M-E's ANC was high enough to start consolidation.
But then you can not begin Consolidation with an active undiagnosed, unresolved infection. So here we sit. Twice a day a dose of antibiotic is administered. The doctors come by and say, " Well........." And we wait. Watching an infected area grow and shrink is not a thrilling event but a necessary evil.
How do we get to the balance? I am beginning to wonder if this is a "bump" in the road to just make me really really want Consolidation to begin. I dreaded it so much and yet now want it to begin. I would hate to loose these moments of remission. I have been assured that we have some time. She would probably stay in remission for up to six months or maybe only six weeks. We are not willing to find out. I know that a relapse would be a very bad thing.
We don't have a Medicine Man readily available but something worked after 4 days in the hospital. It could have been a number of things. Maybe it is the world of prayers being said on M-E's behalf. Maybe I needed to leave the hospital for 16 hours and let nature take it's course. Maybe she needed some good energy from her dad who spent the night. She always sleeps better when he is here.
While I was gone, the news of the start of consolidation was released. We start in a couple of hours. Zofran and then the Cytoxin will go in over an hour and then an Ara-C IV push will be given. Then we wait. The IV drips. We wait. The hours tick and we wait. What will she do? What weird and unusual side affect will occur? We wait.
She is ready. I am more than ready. Mom is on her way and M-E has her Consolidation earrings. Blue topaz in the shape of Rain Drops. The jeweler told me they were tear drops but I don't want them to be tear drops. Rain Drops bring good things. We are counting on good things ahead.
Thanks for your prayers and watch out for non-West going coyotes.
Friday, September 24, 2004
I am working to get us out of here.
We are just doing a lot of waiting. Lots of times trying to make sense of all of it. These people are very ridged about a lot of things. M-E's first does of antibiotic was at 4:00 p.m. in the afternoon. That event sent the schedule and guess what, they follow it. 12 hours later......
Oh, but I have figured out why they are like they are. Here is an example: They really want to keep M-E on Lovenox. Lovenox is given by injection two times a day. It is to keep her from having any more clots. I of course have decided she did not have a clot and that it was a mistake. I have reached that conclusion because when we went for the ultra sound 3 weeks after it was discovered, it was gone. Everyone told me it would be months before it would go away. It is gone. So, I reach a different conclusion than the 947 doctors, nurses, residents, MRI etc. It must have never been there so why treat it.
So here is my theory. We have to have some hard and fast rules in Medicine because there are no rules on how the body reacts. Every single case is different. There are only a few hard and fast rules and so any that they can enforce they do. Remember that case where they had a women life support, Mary Jo Kepectny? And then after years and years they took her off and she continued to live. Experts said she would die, and she did not for several more years. The fact is there is no certainty in this world and no matter how much research, how much technology and how much money we try to find that certainty, sometimes we "Just don't Know" Well back to the room, M-E has a shot scheduled.
I do have to remember though, I live my world in the know certainty that there are not answers, only arguments.
Oh, but I have figured out why they are like they are. Here is an example: They really want to keep M-E on Lovenox. Lovenox is given by injection two times a day. It is to keep her from having any more clots. I of course have decided she did not have a clot and that it was a mistake. I have reached that conclusion because when we went for the ultra sound 3 weeks after it was discovered, it was gone. Everyone told me it would be months before it would go away. It is gone. So, I reach a different conclusion than the 947 doctors, nurses, residents, MRI etc. It must have never been there so why treat it.
So here is my theory. We have to have some hard and fast rules in Medicine because there are no rules on how the body reacts. Every single case is different. There are only a few hard and fast rules and so any that they can enforce they do. Remember that case where they had a women life support, Mary Jo Kepectny? And then after years and years they took her off and she continued to live. Experts said she would die, and she did not for several more years. The fact is there is no certainty in this world and no matter how much research, how much technology and how much money we try to find that certainty, sometimes we "Just don't Know" Well back to the room, M-E has a shot scheduled.
I do have to remember though, I live my world in the know certainty that there are not answers, only arguments.
The First Night back in the Hospital
One of M-E's roommates was a 13 year old surgery patient. She swore like a pirate, had her tongue pierced and was brought back to the room by security because of taking one her friends out on an adventure in wheel chairs.
I asked her how she was doing and she tried to be very rude. Poor child, that was a mistake. My teacher voice came out of nowhere. M-E seemed a bit miffed by some of the behavior but not surprised. She tried to explain to me some kids just acted that way.
I know we complain that the girls are growing up too fast. The I take stock of what a great place St. Joseph's is for Mary-Elizabeth. I look around and know we have provided a great place for our kids. Of course the real question is "Do we do it for them or for ourselves? I hope we do it for both.
I asked her how she was doing and she tried to be very rude. Poor child, that was a mistake. My teacher voice came out of nowhere. M-E seemed a bit miffed by some of the behavior but not surprised. She tried to explain to me some kids just acted that way.
I know we complain that the girls are growing up too fast. The I take stock of what a great place St. Joseph's is for Mary-Elizabeth. I look around and know we have provided a great place for our kids. Of course the real question is "Do we do it for them or for ourselves? I hope we do it for both.
Wednesday, September 22, 2004
We are so happy at the Hem/Onc Hilton
Well it was a productive day, M-E's teeth were cleaned and we had a simulation of the Radiation. We then stopped by the Hem/Onc clinic to have the bump on her leg checked. I should have known better than to do that. I should have known that it was not good to let them look, and ponder and worry. So here we are room 3267, sharing the space with two other children. I am certain they would not be pleased to know that we are here for an unknown infection but then I am not going to say anything yet.
I did get some work done this A.M. I am going to see how far I get this evening. A little bit at at time. Lots of deep breaths and some trusting activity needs to be done practiced by me. Her ANC is high enough to start Consolidation but now with the infection we could be pushed off another week. We all seem to be in this holding pattern. I am just going to try and do my best. I have decided to try and not worry about any schedual. I will let everyone know when it starts and not until.
I can report that the University Hospital has the best food on this side of the Montlake Cut. If you ever have an urge for good lentil soup, try there. Very good.
Well they are medicating M-E with lots of antibiotics and we shall see if the new spot grows.
I did get some work done this A.M. I am going to see how far I get this evening. A little bit at at time. Lots of deep breaths and some trusting activity needs to be done practiced by me. Her ANC is high enough to start Consolidation but now with the infection we could be pushed off another week. We all seem to be in this holding pattern. I am just going to try and do my best. I have decided to try and not worry about any schedual. I will let everyone know when it starts and not until.
I can report that the University Hospital has the best food on this side of the Montlake Cut. If you ever have an urge for good lentil soup, try there. Very good.
Well they are medicating M-E with lots of antibiotics and we shall see if the new spot grows.
Tuesday, September 21, 2004
Best Laid Plans
I am just not going to tell anyone what I am doing or where I am going to be. It will remove one more layer of guilt because no matter how hard I try, I can not get a fence around this new thing in our lives. I think we will name it Lucinda.
We were ready. I had work organized, I had talked to everyone, I had the milk stopped, I had the garbage handled and we were ready for this very very difficult stage of treatment. We went into the clinic for the blood draw and then we waited for the room number. I read, M-E did homework and we waited some more. (We do lots of waiting.)
The counts came back: platelets doubled, White Blood cells up, Red Blood Cells up and we were ready to go. Then, the ANC was finally reported. 528. Then I argued: but the rest are up. Maybe the ANC is wrong. Maybe you don't need to have 750 to start. WE ARE READY.
Answer to all my pleading and begging: NO, NO, and that would be NO.
We took our matching bags and went home. No Cytoxon, no Ara-C, no Methotrexate, no radiation, no opportunity to use really really expensive anti-nausea drugs. We were sent home and told not to come back until next Monday. Did I not feed her right, did I not make sure she had enough sleep?? Did we not have the right bags? Was it watching the Emmy's and the bad jokes that did it? It is all so much a guessing game.
Okay, try and make the best of it. Early to bed on Monday evening. We get up bright and early on Tuesday, we get out the door and I get almost to the school and realize that I failed to flush her PIIC line. I drop her and wonder why it takes 13 minutes to get to our house from the school and 36 minutes to get to the school from our house. ( I now have stashed heprin in my car and at the school.) I do the medical procedure with a class room of 7th graders watching. The little boy next to M-E looked faint and the one next him looked disappointed that there was no apparent blood and pain involved. I got back into the car and received a call from the Phone Guy. He was going to fix our phone. We have had no less than 4 guy and hours of agony on this issue. I returned home to meet him. There went that day.
I did a couple of errands, tried not to feel guilty about work and then picked up M-E.
The plan for Tuesday afternoon involved going home, dinner, some homework and bed. Now how hard could that be to execute. Well it can be pretty hard to do when Lucinda is around.
She had a bump, a small ugly and hurtful bump on her leg. It was bigger and more painful than this morning. The old Sally would have told her to suck it up. The new Sally, that is going to conquer Lucinda at all cost, called the Hem/Onc client and headed to the hospital.
What a surprise, they don't know what it is. But they have lots of options and lots of ways to find out what it is. They don't like it one bit. They want to go after it with great care.
We are now armed with a huge dose of IV antibiotics, a bunch of little vials of medium that grow lots of nasty bugs injected with M-E's blood and a bunch of huge pills.
We are ready for the new bump what ever it turns out to be. We are hitting it from many angles. It will be dosed and purged we will move forward in full war regalia. But then we might not ever know. And I think that just about says it all.
Sort of like Frederica, who is totally, 100% gone by the way. No trace left. She heard they were coming at her with three doses of spot radiation and she decided not to stick around. I hope she told Lucinda to do the same.
We were ready. I had work organized, I had talked to everyone, I had the milk stopped, I had the garbage handled and we were ready for this very very difficult stage of treatment. We went into the clinic for the blood draw and then we waited for the room number. I read, M-E did homework and we waited some more. (We do lots of waiting.)
The counts came back: platelets doubled, White Blood cells up, Red Blood Cells up and we were ready to go. Then, the ANC was finally reported. 528. Then I argued: but the rest are up. Maybe the ANC is wrong. Maybe you don't need to have 750 to start. WE ARE READY.
Answer to all my pleading and begging: NO, NO, and that would be NO.
We took our matching bags and went home. No Cytoxon, no Ara-C, no Methotrexate, no radiation, no opportunity to use really really expensive anti-nausea drugs. We were sent home and told not to come back until next Monday. Did I not feed her right, did I not make sure she had enough sleep?? Did we not have the right bags? Was it watching the Emmy's and the bad jokes that did it? It is all so much a guessing game.
Okay, try and make the best of it. Early to bed on Monday evening. We get up bright and early on Tuesday, we get out the door and I get almost to the school and realize that I failed to flush her PIIC line. I drop her and wonder why it takes 13 minutes to get to our house from the school and 36 minutes to get to the school from our house. ( I now have stashed heprin in my car and at the school.) I do the medical procedure with a class room of 7th graders watching. The little boy next to M-E looked faint and the one next him looked disappointed that there was no apparent blood and pain involved. I got back into the car and received a call from the Phone Guy. He was going to fix our phone. We have had no less than 4 guy and hours of agony on this issue. I returned home to meet him. There went that day.
I did a couple of errands, tried not to feel guilty about work and then picked up M-E.
The plan for Tuesday afternoon involved going home, dinner, some homework and bed. Now how hard could that be to execute. Well it can be pretty hard to do when Lucinda is around.
She had a bump, a small ugly and hurtful bump on her leg. It was bigger and more painful than this morning. The old Sally would have told her to suck it up. The new Sally, that is going to conquer Lucinda at all cost, called the Hem/Onc client and headed to the hospital.
What a surprise, they don't know what it is. But they have lots of options and lots of ways to find out what it is. They don't like it one bit. They want to go after it with great care.
We are now armed with a huge dose of IV antibiotics, a bunch of little vials of medium that grow lots of nasty bugs injected with M-E's blood and a bunch of huge pills.
We are ready for the new bump what ever it turns out to be. We are hitting it from many angles. It will be dosed and purged we will move forward in full war regalia. But then we might not ever know. And I think that just about says it all.
Sort of like Frederica, who is totally, 100% gone by the way. No trace left. She heard they were coming at her with three doses of spot radiation and she decided not to stick around. I hope she told Lucinda to do the same.
Sunday, September 19, 2004
I really have other stuff to do but then......
I have that "You must have something productive to do gene" I just need to sit here. I also need to figure out if I tossed my new spare pair of glasses away. I had them in a bag and we have had recycle day and.......... I think it is possible. Oh, well no one has even noticed I have new glasses. I knew I should have purchased the ones with the red rhinestones on them. M-Elizabeth did not want to be seen with me. How can she talk? She has 5 tattoos, three on her back and one on each side.
Oh, now I understand. When you get old like I am, 50, you start to do things like get sparkly rhinestone cat eye glasses because no one notices you have new ones. I guess that garish cloths and wild hats and rhinestone glasses are the fault of the world not the person that puts them on. Now that I have solved that dilemma I am going to go get another cup of coffee.
Oh, now I understand. When you get old like I am, 50, you start to do things like get sparkly rhinestone cat eye glasses because no one notices you have new ones. I guess that garish cloths and wild hats and rhinestone glasses are the fault of the world not the person that puts them on. Now that I have solved that dilemma I am going to go get another cup of coffee.
Saturday, September 18, 2004
Climbing Mount Everest
We are at base camp and must wait a couple of more days for news before we can head on our journey. Everyone is getting antsy but we are working to get ready. M-E was able to sleep over at the Verhoffs. I still woke up but it was nice to have some down time. I need to do that more. I figured that while she was so stable and feeling good I could escape for a little while.
I would like to share this burden but this is so complicated and I am the only person that really knows the whole story. We are doing medicine by committee and M-E is going to be in books someday. Because we have been involved in three separate medical communities it is hard. I think as we go on and get into some more predictable stages of treatment I can let some other's take her to her treatments. I will see if we can get to another "R" word, "Routine".
As we wait she is shedding. Bits and pieces of her DNA have been deposited all over, the house, the car, the school, the street. Picture Pigpen from Charlie Brown. She seems very matter of fact about it. It is falling out . She is not ready to cut it off but is thinning. It seems to gross me out more than bother her. I think I have that mother hair thing going. You know, the one where every time a mother opens her mouth she says " Get your hair out of your eyes!!!"
M-E is ready. Ruth insisted on hat purchases. I asked M-E if she really thought if her head would get cold and she said in all of her 12 year old wisdom "Mom, my head is use to having lots of hair ! Of course it is going to be cold." Silly silly me. She has several hats purchased and a couple belts. She is trying to complete some homework and I am doing laundry, working a bit and trying to clean the kitchen. M-E is doing better than I am on getting her tasks done. I am scattered. I may need some ADD meds soon.
I napped a bit today and tried to finish the auction quilt. See there is still a part of me that thinks I should still be able to do it all. I am trying not to feel guilty that our class does not have a room parent. I have to let that one go. I have to let someone else get the class project done. I am getting a knot in my stomach. I am anxious about the treatment, stuff at the office, money, about Mary-Elizabeth, about how the next day will go. I find that I worry more when I am tired.
Worry is just part of this process. It is part of the preparation for the next step. Will she be successful in this treatment, will she suffer some of the possible side effects, cataracts, secondary luekemia, brain tumors, learning disabilities etc..... Will she ever be able to get health insurance after having ALL, will I be able to work enough to have a job to keep our health insurance, will Hurricane Yogi hit Seattle. See, I am tired and need to go finish my tasks for the day and go to bed.
I know that things are fine at work, I know that we have the best doctors in the country, I know that the school will do everything possible to help get us through. I know that we will handle this time with faith and prayer and good pioneer determination. I also know that things will go well and M-E will make it to the next stage with the same great spirit that she has exhibited in the last 5 weeks..... "Mom, that didn't hurt as much as I thought." " See that did not make me sick" "Mom, I will feel better after a nap and some ice cream." "Mom, see my chubby cheeks are starting to shrink." "See, I still have some hair." " Mom, can you believe has nice everyone has been." " Mom, God will get us through this but we don't have to be happy about it right now." " Mom, I love cards and meals people bring. There a lots of good cooks out there."
We are on a journey, we are resting, we are starting up to the next camp on Monday about 2:30 p.m. Wish us luck.
I would like to share this burden but this is so complicated and I am the only person that really knows the whole story. We are doing medicine by committee and M-E is going to be in books someday. Because we have been involved in three separate medical communities it is hard. I think as we go on and get into some more predictable stages of treatment I can let some other's take her to her treatments. I will see if we can get to another "R" word, "Routine".
As we wait she is shedding. Bits and pieces of her DNA have been deposited all over, the house, the car, the school, the street. Picture Pigpen from Charlie Brown. She seems very matter of fact about it. It is falling out . She is not ready to cut it off but is thinning. It seems to gross me out more than bother her. I think I have that mother hair thing going. You know, the one where every time a mother opens her mouth she says " Get your hair out of your eyes!!!"
M-E is ready. Ruth insisted on hat purchases. I asked M-E if she really thought if her head would get cold and she said in all of her 12 year old wisdom "Mom, my head is use to having lots of hair ! Of course it is going to be cold." Silly silly me. She has several hats purchased and a couple belts. She is trying to complete some homework and I am doing laundry, working a bit and trying to clean the kitchen. M-E is doing better than I am on getting her tasks done. I am scattered. I may need some ADD meds soon.
I napped a bit today and tried to finish the auction quilt. See there is still a part of me that thinks I should still be able to do it all. I am trying not to feel guilty that our class does not have a room parent. I have to let that one go. I have to let someone else get the class project done. I am getting a knot in my stomach. I am anxious about the treatment, stuff at the office, money, about Mary-Elizabeth, about how the next day will go. I find that I worry more when I am tired.
Worry is just part of this process. It is part of the preparation for the next step. Will she be successful in this treatment, will she suffer some of the possible side effects, cataracts, secondary luekemia, brain tumors, learning disabilities etc..... Will she ever be able to get health insurance after having ALL, will I be able to work enough to have a job to keep our health insurance, will Hurricane Yogi hit Seattle. See, I am tired and need to go finish my tasks for the day and go to bed.
I know that things are fine at work, I know that we have the best doctors in the country, I know that the school will do everything possible to help get us through. I know that we will handle this time with faith and prayer and good pioneer determination. I also know that things will go well and M-E will make it to the next stage with the same great spirit that she has exhibited in the last 5 weeks..... "Mom, that didn't hurt as much as I thought." " See that did not make me sick" "Mom, I will feel better after a nap and some ice cream." "Mom, see my chubby cheeks are starting to shrink." "See, I still have some hair." " Mom, can you believe has nice everyone has been." " Mom, God will get us through this but we don't have to be happy about it right now." " Mom, I love cards and meals people bring. There a lots of good cooks out there."
We are on a journey, we are resting, we are starting up to the next camp on Monday about 2:30 p.m. Wish us luck.
Thursday, September 16, 2004
The Eye before the Storm
Now I know how they feel in Hurricane country. The wait. The anticipation of the winds (the chemo) and the rains ( radiation) and the tidal surge ( the side affects). You can never figure out how any of it is going to work.
We are in the calm before the storm. We have this little trip for a blood draw to see if her platelets have been following their friends white blood cells and run up the mountain. I guess they are very good friends and that is what they usually do. They all like to be together. She feels good. The hair is going and the cheeks are chubby but the appetite are great, the insulin need is gone, the energy is back and she is sleeping like a baby.
She was in P.E. for part of the class until they started with the game where they throw balls at each other. No contact sports. I wonder if that means dances and boys? She does not seem too interested at this point. ( I do digress a bit but it is 6:30 a.m. and I am only on my first cup of coffee.) She feels great. She was ready to do the jog-a-thon but I bet the teachers will figure out a way for her to do it this week.
We are just waiting. We think we know what is coming but we don't know really what the direction will be. We know that there are high winds ahead but they might not be so bad here. They might hit the kid across the street. We know that there will be rain but the drainage might be able to handle the onflow. We just don't know. So we wait and think about what we know.
We know when it starts, we have matching overnight bags for the hospital from Landsend. MEB@Hem/ONC Hilton and SAL@Hem/Onc Hilton ( this is not a link it is a bag) We are ready. We just have to see what happens after the storm. We have to go clean up after the wind and rain and the palm trees fall down. Hopefully we have installed enough plywood and purchased enough batteries to survive.
We shall see.
We are in the calm before the storm. We have this little trip for a blood draw to see if her platelets have been following their friends white blood cells and run up the mountain. I guess they are very good friends and that is what they usually do. They all like to be together. She feels good. The hair is going and the cheeks are chubby but the appetite are great, the insulin need is gone, the energy is back and she is sleeping like a baby.
She was in P.E. for part of the class until they started with the game where they throw balls at each other. No contact sports. I wonder if that means dances and boys? She does not seem too interested at this point. ( I do digress a bit but it is 6:30 a.m. and I am only on my first cup of coffee.) She feels great. She was ready to do the jog-a-thon but I bet the teachers will figure out a way for her to do it this week.
We are just waiting. We think we know what is coming but we don't know really what the direction will be. We know that there are high winds ahead but they might not be so bad here. They might hit the kid across the street. We know that there will be rain but the drainage might be able to handle the onflow. We just don't know. So we wait and think about what we know.
We know when it starts, we have matching overnight bags for the hospital from Landsend. MEB@Hem/ONC Hilton and SAL@Hem/Onc Hilton ( this is not a link it is a bag) We are ready. We just have to see what happens after the storm. We have to go clean up after the wind and rain and the palm trees fall down. Hopefully we have installed enough plywood and purchased enough batteries to survive.
We shall see.
Wednesday, September 15, 2004
Everyone is RELIEVED
We all slept last night. I just went and crawled into bed after the Remission news arrived.
Lots of people think that we are now done. Well we would like to be done. Evidently you can get kids into remission with only Prenisone. You just can not keep them there. We will go through several periods of maintenance and something called Delayed Intesification. I have not really looked at that time because I have to get through the first phase. This is what I know.
The next 2 month phase of her treatment requires.
A. Two planned hospitalizations overnight
B. 16 IV doses of chemo in the clinic at the Hospital
C. 28 doses of oral chemo
D. 2 doses of Chemo for her Spine
E. 5 dose IV Vincristine ( Chemo)
F. 2 Pre asparagus Shots
G. 12 days of radiation 9 doses to the Brain, 3 to the Spine and 2 to the Spot.
So our next challenge is ahead of us.
My dad said that Mary-E will teach us a lot during this time. I know that she will.
I have learned that things are not as you expect or plan.
I have learned that when faced with more information than I can handle the only way to deal with it is to go to the Office Supply store. If you have enough notebooks the world is good. Tabs are very important and we are going to soon explore the concept of color coding. They may not make enough highlighters for my purposes.
I have learned that when faced with insurmountable problems, one step, one moment, one day, one more meeting with a doctor is enough. All the future information can just go into the "Information" Pile. You can never have enough bags in which to put your notebooks and office supplies.
I have learned that the world does not truly appreciate the concept of the three hole punch. Everything should come three-hole punched or there should be three hole punches everywhere like garbage cans or phones or bad pens.
I have found that it is possible to keep up on the laundry by doing a load a day.
I have found that there are many good cooks at St. Joseph's. They have been so great and supportive.
I have found that I am very greatful for a profession that let's me help people with solvable problems.
I have found I can handle a lot more than I thought I could. I think that if you can still have a sense of humor on day 30 of Lwequemia treatment you can survive anything. What could be harder than this? Do I want to know?
I know I am going for a hamburger just because. I have learned we need to do lots of "Just Because" things. You never know if you will have time for more of them
Tomorrow we are going to get my baby tatooed. Now there is something that was not on my list of "must haves".
Lots of people think that we are now done. Well we would like to be done. Evidently you can get kids into remission with only Prenisone. You just can not keep them there. We will go through several periods of maintenance and something called Delayed Intesification. I have not really looked at that time because I have to get through the first phase. This is what I know.
The next 2 month phase of her treatment requires.
A. Two planned hospitalizations overnight
B. 16 IV doses of chemo in the clinic at the Hospital
C. 28 doses of oral chemo
D. 2 doses of Chemo for her Spine
E. 5 dose IV Vincristine ( Chemo)
F. 2 Pre asparagus Shots
G. 12 days of radiation 9 doses to the Brain, 3 to the Spine and 2 to the Spot.
So our next challenge is ahead of us.
My dad said that Mary-E will teach us a lot during this time. I know that she will.
I have learned that things are not as you expect or plan.
I have learned that when faced with more information than I can handle the only way to deal with it is to go to the Office Supply store. If you have enough notebooks the world is good. Tabs are very important and we are going to soon explore the concept of color coding. They may not make enough highlighters for my purposes.
I have learned that when faced with insurmountable problems, one step, one moment, one day, one more meeting with a doctor is enough. All the future information can just go into the "Information" Pile. You can never have enough bags in which to put your notebooks and office supplies.
I have learned that the world does not truly appreciate the concept of the three hole punch. Everything should come three-hole punched or there should be three hole punches everywhere like garbage cans or phones or bad pens.
I have found that it is possible to keep up on the laundry by doing a load a day.
I have found that there are many good cooks at St. Joseph's. They have been so great and supportive.
I have found that I am very greatful for a profession that let's me help people with solvable problems.
I have found I can handle a lot more than I thought I could. I think that if you can still have a sense of humor on day 30 of Lwequemia treatment you can survive anything. What could be harder than this? Do I want to know?
I know I am going for a hamburger just because. I have learned we need to do lots of "Just Because" things. You never know if you will have time for more of them
Tomorrow we are going to get my baby tatooed. Now there is something that was not on my list of "must haves".
Tuesday, September 14, 2004
She has 3% Blasts and the Flow Cytometer says everything is okay!!!!!!!!!!!
I have not received a copy of the final report but the word on the street is:
3% neoblasts in her bone marrow. ( normal)
No bad proteins found on the neoblasts and all that means
3% neoblasts in her bone marrow. ( normal)
No bad proteins found on the neoblasts and all that means
SHE IS IN REMISSION
So now I can breath a bit more. We have one more appointment on Thursday for the mask making and tattooing. A stop for a platelet evaluation and then we have days and days off. Oh, that would Friday, Saturday and Sunday. It feels likes days and days. Everyday that we are not at the hospital is a gift. Everyday that we are at school and work is an entire holiday.
Thanks for your prayers and your good thoughts. I am glad to know that God has a sense of humor and that retribution was not heaped upon our heads for going to the races on Sunday instead of church. I am sure she understood the need for some fresh air and some well placed bets.
So now I can breath a bit more. We have one more appointment on Thursday for the mask making and tattooing. A stop for a platelet evaluation and then we have days and days off. Oh, that would Friday, Saturday and Sunday. It feels likes days and days. Everyday that we are not at the hospital is a gift. Everyday that we are at school and work is an entire holiday.
Thanks for your prayers and your good thoughts. I am glad to know that God has a sense of humor and that retribution was not heaped upon our heads for going to the races on Sunday instead of church. I am sure she understood the need for some fresh air and some well placed bets.
I am also glad to report that the Navaho healers that did the Cedar Ceremony on her behalf were right: There was nothing to worry about.
Saturday, September 11, 2004
This is the Plan for the next 63 days.
CONSOLIDATION OF REMISSION: (This is the worst phase of therapy.) Considation means that Lue is gone but the world of M-E's Body is going to make sure it never comes back!!!!
DAY 35/0
September 20
IT-Methotrexate
Start cranial radiation (9 days cranial; 3 days include spinal plus three or four more of the bump)
Overnight in the hospital for cytoxan ( This is so nasty they only give in the hospital.) This will not be a pleasant night. & Ara-C Mercaptopurine ( Oral)
9-21 Ara-C IV Children's Hospital Mercaptopurine
9-22 Ara-C IV Children's Hospital
Begin Spinal/Cranial Radiation U of W Hospital Mercapurine
9-23 Ara-C IV Children's Hospital
Day 2 Spinal/Cranial Radiation U of W Hospital Mercapurine
9-24 Day 3 Spinal Cranial Radiaion U of W Hospital Mercapurine
9-25 Mercaptopurine
9-26 Mercaptopurine Hold Lovanox after A.M. injection
9-28 Mercaptopurine Bactrim Arc-C @ Children's Hospital
Day 5 Spinal Cranial Radiation U of W Hospital
9-29 Mercaptopurine Arc-C Children's Hospital
Day 6 Spinal Cranial Radiation U of W Hosptial
9-30 Mercaptopurine Arc-C Children's Hospital
Day 7 Spinal Cranial Radiation U of W Hospital
10-1 Mercaptopurine
Day 8 Spinal Cranial Radiation U of W housefly
10-2 Mercaptopurine
10-3 Mercaptopurin
Check counts frequently - may need transfusions
DAY 14
10-4 Bactrim
Day9 Spinal Cranial Radiation U of W Hospital BCR/PEG Asperigus Shot Children's Hospital
10-5- Day 10 Cranial Radiation Bactrim
10-6 Day 11 Cranial Radiation
10-7 Day 12 Cranial Radiation
10-8
10-9 Check counts frequently may need to be tranfused.
10-10
Day 21
10-11 Vincristin IV at Children's Hospital, Bactrim
10-1 2 Bactrim
10-13
10-14
10-15
10-16
10-17
DAY 28
10-18 Bactrim Cytoxan overnight in at Childrens Ara-C **
10-19 Mercaptopurine, Ara-C IV Children's Hospital Bactrim
10-20 Mercaptopurine Ara-C @ Children's Hospital
10-21 Mercaptopurine Ara-C@ Children's hospital
10-22 Mercaptopurine
10-23 Mercaptopurine
10-24 Mercaptopurine
DAY 35
10-25 Mercaptopurine Bactrim & Ara-C @ Children's Hospital
10-26 Bactrim Mercaptopurine & Ara-C@ Children's Hospital
10-27 Mercaptopurine & Ara-C@ Children's Hospital
10-28 Mercaptopurine & Ara-C@ Children's Hospital
10-29 Mercaptopurine
10-30 Mercaptopurine
10-31 Mercaptopurine
Check counts frequently - may need transfusions
DAY 42
Check counts frequently - may need transfusions
Nov 1 Mercaptopurine VCR/PEG ASP shot Bactrim @/Children's Hospital
Nov 2 Bactrim
Nov3
Nov 4
Nov 5
Nov 6
Nov 7
DAY 49
Nov 8 Vincristine Bactrim @Children's Hospital
Nov 9 Bactrim
Nov 10
Nov 11
Nov 12
Nov13
Nov 14
DAY 56
Nov 15 Labs and evaluation Bactrim
Nov 16 Bactrim
Nov17
Nov 18
Nov 19
Nov 20
Nov 21 Hold PM Lovinox
DAY 63
Nov 22 Bactrim Hold Lovinox AM IT Methotrexate Bactrim
Nov 23 Bactrim
Move to Interim Maintenance if Possible
____________________________________________________________________
Medications given in clinic or hospital:
Cyclophosphamide (Cytoxan) - IV in hospital with fluids; side effects: nausea (given with Zofran), low counts
Cytarabine (Ara-C) - IVP with zofran; side effects: fever, rash, dropping counts, mouth sores, poor appetite
Vincristine (VCR) - IV push; side effects: constipation, jaw/leg pain
PEG Asparaginase (PEG ASP) - IM shot into muscle; need to stay in clinic for 1 hour after receiving
Side effects: allergic (hives, wheezing, swollen lips); can also become red, swollen and slightly sore right around site
Ice helps the best for IM injections - the EMLA only numbs the top of the skin so is not very helpful for the shots
Medications at home:
Mercaptopurine (Purinethol) - oral chemotherapy given in the evening
Bactrim (sulfamethoxazole-trimethoprim) - oral antibiotic to prevent PCP pneumonia; twice a day on Mon & Tues only
Ondansetron (Zofran) - every 8 hours as needed for nausea; will receive dose in clinic with Ara-C if >6 hours since last dose
DAY 35/0
September 20
IT-Methotrexate
Start cranial radiation (9 days cranial; 3 days include spinal plus three or four more of the bump)
Overnight in the hospital for cytoxan ( This is so nasty they only give in the hospital.) This will not be a pleasant night. & Ara-C Mercaptopurine ( Oral)
9-21 Ara-C IV Children's Hospital Mercaptopurine
9-22 Ara-C IV Children's Hospital
Begin Spinal/Cranial Radiation U of W Hospital Mercapurine
9-23 Ara-C IV Children's Hospital
Day 2 Spinal/Cranial Radiation U of W Hospital Mercapurine
9-24 Day 3 Spinal Cranial Radiaion U of W Hospital Mercapurine
9-25 Mercaptopurine
9-26 Mercaptopurine Hold Lovanox after A.M. injection
Day 7:
9-27 Mercaptopurine
IT Methotrexate Arc-C Children's Hospital Bactrim
Day 4 Spinal Cranial Radiation U of W Hospital9-28 Mercaptopurine Bactrim Arc-C @ Children's Hospital
Day 5 Spinal Cranial Radiation U of W Hospital
9-29 Mercaptopurine Arc-C Children's Hospital
Day 6 Spinal Cranial Radiation U of W Hosptial
9-30 Mercaptopurine Arc-C Children's Hospital
Day 7 Spinal Cranial Radiation U of W Hospital
10-1 Mercaptopurine
Day 8 Spinal Cranial Radiation U of W housefly
10-2 Mercaptopurine
10-3 Mercaptopurin
Check counts frequently - may need transfusions
DAY 14
10-4 Bactrim
Day9 Spinal Cranial Radiation U of W Hospital BCR/PEG Asperigus Shot Children's Hospital
10-5- Day 10 Cranial Radiation Bactrim
10-6 Day 11 Cranial Radiation
10-7 Day 12 Cranial Radiation
10-8
10-9 Check counts frequently may need to be tranfused.
10-10
Day 21
10-11 Vincristin IV at Children's Hospital, Bactrim
10-1 2 Bactrim
10-13
10-14
10-15
10-16
10-17
DAY 28
10-18 Bactrim Cytoxan overnight in at Childrens Ara-C **
10-19 Mercaptopurine, Ara-C IV Children's Hospital Bactrim
10-20 Mercaptopurine Ara-C @ Children's Hospital
10-21 Mercaptopurine Ara-C@ Children's hospital
10-22 Mercaptopurine
10-23 Mercaptopurine
10-24 Mercaptopurine
DAY 35
10-25 Mercaptopurine Bactrim & Ara-C @ Children's Hospital
10-26 Bactrim Mercaptopurine & Ara-C@ Children's Hospital
10-27 Mercaptopurine & Ara-C@ Children's Hospital
10-28 Mercaptopurine & Ara-C@ Children's Hospital
10-29 Mercaptopurine
10-30 Mercaptopurine
10-31 Mercaptopurine
Check counts frequently - may need transfusions
DAY 42
Check counts frequently - may need transfusions
Nov 1 Mercaptopurine VCR/PEG ASP shot Bactrim @/Children's Hospital
Nov 2 Bactrim
Nov3
Nov 4
Nov 5
Nov 6
Nov 7
DAY 49
Nov 8 Vincristine Bactrim @Children's Hospital
Nov 9 Bactrim
Nov 10
Nov 11
Nov 12
Nov13
Nov 14
DAY 56
Nov 15 Labs and evaluation Bactrim
Nov 16 Bactrim
Nov17
Nov 18
Nov 19
Nov 20
Nov 21 Hold PM Lovinox
DAY 63
Nov 22 Bactrim Hold Lovinox AM IT Methotrexate Bactrim
Nov 23 Bactrim
Move to Interim Maintenance if Possible
____________________________________________________________________
Medications given in clinic or hospital:
Cyclophosphamide (Cytoxan) - IV in hospital with fluids; side effects: nausea (given with Zofran), low counts
Cytarabine (Ara-C) - IVP with zofran; side effects: fever, rash, dropping counts, mouth sores, poor appetite
Vincristine (VCR) - IV push; side effects: constipation, jaw/leg pain
PEG Asparaginase (PEG ASP) - IM shot into muscle; need to stay in clinic for 1 hour after receiving
Side effects: allergic (hives, wheezing, swollen lips); can also become red, swollen and slightly sore right around site
Ice helps the best for IM injections - the EMLA only numbs the top of the skin so is not very helpful for the shots
Medications at home:
Mercaptopurine (Purinethol) - oral chemotherapy given in the evening
Bactrim (sulfamethoxazole-trimethoprim) - oral antibiotic to prevent PCP pneumonia; twice a day on Mon & Tues only
Ondansetron (Zofran) - every 8 hours as needed for nausea; will receive dose in clinic with Ara-C if >6 hours since last dose
Thursday, September 09, 2004
Mary-Elizabeth is getting tattooed
She will have three freckle marks on her back. For the rest of her life. See God gets you. I told her she never was to get a tattoo and now I am paying for it. I said no Cell phone and now we have so many phone's I want to scream.
Each and every step is a new challenge. I am just overwhelmed with it all today. I found out today that Regents will not pay for her Zofan without a fight.( This is the drug that keeps her from getting nausiated. They would prefer we use something that makes people crazy later in life. Karyn is asking for 100 they want to give me 12. I may have to see what they cost. I don't have the strength to fight it all. I guess the insurance company would like me to get fired so that I could not pay the premium and then they would not have to pay for the next 29 months one week of treatment. The reality is she will always need extra care. I loved being told by the RadioOncologist that the radiation we are giving her causes brain tumors. Isn't that where we started?
Oh, we did an ultrasound today. The tech couldn't find the blood clot, in either side of her neck. I did get to see the corroded artery sitting right under the jugular vein. It was great.
Okay, I will quit whinnying. I am just really dreading the next 65 days. I am dreading she won't be in remission and won't get to move on to Consolidation. I dread we are moving on to Consolidation and have to face a whole new set of drugs and side affects and more side affects. God, what did I do to have to go through this? What did I do so M-E has to go through this? I know there is no answer to those questions. I just need to ask them on occasion. Should I worry about 2400 rads? They are going to turn her into Dorrie for a while. Oh, well, we will have a chance to see what she will be like when she is a little old lady. God, I want her to be a little old lady. So here we go, pray for remission on the 13th. She was diagnosed on the 13th, she should be in remission on that day. Before this is all over she may just go from 12 to 14.
Each and every step is a new challenge. I am just overwhelmed with it all today. I found out today that Regents will not pay for her Zofan without a fight.( This is the drug that keeps her from getting nausiated. They would prefer we use something that makes people crazy later in life. Karyn is asking for 100 they want to give me 12. I may have to see what they cost. I don't have the strength to fight it all. I guess the insurance company would like me to get fired so that I could not pay the premium and then they would not have to pay for the next 29 months one week of treatment. The reality is she will always need extra care. I loved being told by the RadioOncologist that the radiation we are giving her causes brain tumors. Isn't that where we started?
Oh, we did an ultrasound today. The tech couldn't find the blood clot, in either side of her neck. I did get to see the corroded artery sitting right under the jugular vein. It was great.
Okay, I will quit whinnying. I am just really dreading the next 65 days. I am dreading she won't be in remission and won't get to move on to Consolidation. I dread we are moving on to Consolidation and have to face a whole new set of drugs and side affects and more side affects. God, what did I do to have to go through this? What did I do so M-E has to go through this? I know there is no answer to those questions. I just need to ask them on occasion. Should I worry about 2400 rads? They are going to turn her into Dorrie for a while. Oh, well, we will have a chance to see what she will be like when she is a little old lady. God, I want her to be a little old lady. So here we go, pray for remission on the 13th. She was diagnosed on the 13th, she should be in remission on that day. Before this is all over she may just go from 12 to 14.
Tuesday, September 07, 2004
We saw Ellie Today
Every day at the hospital is a new adventure in many ways. We were there around 9:10, I do stop for a coffee and a snack so that I don't get too grumpy. (What a surprise, low blood sugar is not good for the brain.) Things went okay. Weighed in. She only lost a pound, blood draws, dressing changes, cartoon watching and lots of waiting. Lots of Chemo but we can report we are done with Asparagus shots. There are two more Pre Asparagus shots in October and November but not 9 in a row.
We were sort of antsy and then saw Ellie. Ellie was M-E's first roommate. She is 2.5 years old. She has a twin named Sam and her parents are architects. They found a tumor the size of a Grapefruit in her brain. She was in for treatment when M-E was first there. She is one sick little girl that has figured out some big people are not nice.
She and I became sticker friends. I gave her stickers and she was my friend. I was able to let her pick out a couple today. She smiled that great, sort of hesitant smile and said thank-you. She is obviously affected by the surgery and the treatment. She has such a pure pure smile. Then she turned to show her dad the stickers and I could see that she had Emla Cream on a spot on the top of her head. In cancer world that means she has a port of some sort and she was in for treatment. They are putting the chemo directly into her brain. I shuddered, counted my blessings, said an extra prayer for Ellie and then one for us.
Things are crazy. I cann't get stuff done in the way I used to be able to do it. I have this new nurse job and am not very good at it. I try but I am just not cut out for it. Nursing could use some streamlining. So why is it that the two kinds of insulin cann't mix in the same place as the Heprin? Do they just say no because they can or is there a good reason. How come no one can tell me the history of the variouse drugs other than Vincristine. (Made from Perriwinkle Plants.) Who was the first one to figure all this stuff out. In the old days I would have been looking this stuff up. As this point I just have to get through this evening. One Lovanox shot, I am not giving her insulin because she is not eating and I am now terrified of low blood sugar. Some oral pills, a heprin flush, a temperature and then we will see. But M-E does not have a port in her head.
The Bone Marrow is next Monday, the 13th of September. The "R" word we are hoping for is REMISSON.
We were sort of antsy and then saw Ellie. Ellie was M-E's first roommate. She is 2.5 years old. She has a twin named Sam and her parents are architects. They found a tumor the size of a Grapefruit in her brain. She was in for treatment when M-E was first there. She is one sick little girl that has figured out some big people are not nice.
She and I became sticker friends. I gave her stickers and she was my friend. I was able to let her pick out a couple today. She smiled that great, sort of hesitant smile and said thank-you. She is obviously affected by the surgery and the treatment. She has such a pure pure smile. Then she turned to show her dad the stickers and I could see that she had Emla Cream on a spot on the top of her head. In cancer world that means she has a port of some sort and she was in for treatment. They are putting the chemo directly into her brain. I shuddered, counted my blessings, said an extra prayer for Ellie and then one for us.
Things are crazy. I cann't get stuff done in the way I used to be able to do it. I have this new nurse job and am not very good at it. I try but I am just not cut out for it. Nursing could use some streamlining. So why is it that the two kinds of insulin cann't mix in the same place as the Heprin? Do they just say no because they can or is there a good reason. How come no one can tell me the history of the variouse drugs other than Vincristine. (Made from Perriwinkle Plants.) Who was the first one to figure all this stuff out. In the old days I would have been looking this stuff up. As this point I just have to get through this evening. One Lovanox shot, I am not giving her insulin because she is not eating and I am now terrified of low blood sugar. Some oral pills, a heprin flush, a temperature and then we will see. But M-E does not have a port in her head.
The Bone Marrow is next Monday, the 13th of September. The "R" word we are hoping for is REMISSON.
Monday, September 06, 2004
We Are almost done With Phase One
I guess I should count the phases. I will be content at this point to just be happy to be almost done with the first phase. From how things have gone thus far, I should know that all the pre-planning, the anticipation and thinking she will react to anything like a normal patient is a silly idea.
She has her last Chemo for this round on Tuesday. She is done for a week except for one more IT (Interthecal= medication into the spinal cord) and a bone marrow test on the 13th. Then we are off for a whole week. Pray for high ANC numbers, non-existent lewcemeia cell in the bone marrow and a new supply of tequila for me.
We are missing Sadie. I need to start pretending to walk her. I need to get out of the house. I have not given up my membership to the gym but should for a while at least. I need to return flute we were buying since lessons are not going to be happening. I need to do some real work today or at least try. I feel better when I can work on other people's problems and help them figure out what is going on.
How do the doctors do it? How do they have to face 50-85 ALL patients a year knowing they don't have a 100% cure rate. I know that 100% of my clients will get divorced, if they want to do so. I am now glad I only received a C in my first semester of chemistry. It took me another way.
Oh, just so I can be consistent. India is fine this time of year. I encourage everyone to call MSN and spend 45 minutes on the phone. My favorite part of the conversation was with the gentlemen that then told me I should not have called them but rather QWEST. Someday we will have to sit around and determine whether or not the biggest problem during this time was the ALL or the technology.
She has her last Chemo for this round on Tuesday. She is done for a week except for one more IT (Interthecal= medication into the spinal cord) and a bone marrow test on the 13th. Then we are off for a whole week. Pray for high ANC numbers, non-existent lewcemeia cell in the bone marrow and a new supply of tequila for me.
We are missing Sadie. I need to start pretending to walk her. I need to get out of the house. I have not given up my membership to the gym but should for a while at least. I need to return flute we were buying since lessons are not going to be happening. I need to do some real work today or at least try. I feel better when I can work on other people's problems and help them figure out what is going on.
How do the doctors do it? How do they have to face 50-85 ALL patients a year knowing they don't have a 100% cure rate. I know that 100% of my clients will get divorced, if they want to do so. I am now glad I only received a C in my first semester of chemistry. It took me another way.
Oh, just so I can be consistent. India is fine this time of year. I encourage everyone to call MSN and spend 45 minutes on the phone. My favorite part of the conversation was with the gentlemen that then told me I should not have called them but rather QWEST. Someday we will have to sit around and determine whether or not the biggest problem during this time was the ALL or the technology.
Sunday, September 05, 2004
It Was Not Me IT WAS the Modem
So, when you think you have all you can possible deal with in life, God sends you technology to really see if you can hack it. It is a long ugly story. India is fine this time of year. I was on the phone for hours and finally after Quest tested the line they concluded I need a new Modem. Oh, well. Lesson for the day: Nothing is easy. Everything is a challenge but sometimes you are vindicated. I do have a better grasp as to what I am expected to know when talking to those who hide behind the voice of "Tech Support". You better know your operating system and what version of MSN you have. You better know you RAM not to be confused with ROM. Who are these people. I realize that there is a place in the world for the truly bright and that if we don't keep them occupied we get more UniBombers and Charles Manson's but for God's sake, how many languages do I need to learn this month.
So we are off the hospital for an asparagus( L-asperiginace) shot (injection) and a blood draw. We will be drop off our used needles (sharps) and assorted garbage ( Medical Waste). I am hoping we don't get caught in too much Husky traffic (Crazy people that sit in a stadium after consuming and while consuming large amounts of beer)
My brother David is here for a couple of days and has been able to get some projects done. He and Alex are always a lot of help.
So we are off the hospital for an asparagus( L-asperiginace) shot (injection) and a blood draw. We will be drop off our used needles (sharps) and assorted garbage ( Medical Waste). I am hoping we don't get caught in too much Husky traffic (Crazy people that sit in a stadium after consuming and while consuming large amounts of beer)
My brother David is here for a couple of days and has been able to get some projects done. He and Alex are always a lot of help.
Saturday, September 04, 2004
We have had better days and nights
So let's see. The dishwasher is making a funny noise or maybe I am just hearing it for the first time. The Endro docs don't know how to treat or manage M-E's blood sugar. We have to test at 2:00 am which is great. Now I set an alarm to wake up and worry.
I can not get the DSL line to work. I would love the call tech support but then I cannot call and us the computer at the same time. Yes, I am being whinny. Sleep would be a good thing but the schedule that is set up for the various procedures requires attention every 3 hours so , I guess this new baby's name is Lue and we have lots of midnight feedings. I am sure there is a light at the end of the tunnel but it feels like a black hole at the furthest reaches of the universe and they are going to turn off the Hubble soon so we can have more toys for wars. Oh, can you tell I am in one of those moods?
Sal
I can not get the DSL line to work. I would love the call tech support but then I cannot call and us the computer at the same time. Yes, I am being whinny. Sleep would be a good thing but the schedule that is set up for the various procedures requires attention every 3 hours so , I guess this new baby's name is Lue and we have lots of midnight feedings. I am sure there is a light at the end of the tunnel but it feels like a black hole at the furthest reaches of the universe and they are going to turn off the Hubble soon so we can have more toys for wars. Oh, can you tell I am in one of those moods?
Sal
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 READY
Good 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.
Good 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.
Sunday, August 29, 2004
Just a Short Note
I was going to go to work today. I am feeling I really need to be there but then M-E made it very clear that I needed to be here. I have worked over the years to make her independent and self sufficient but she needs me more than we both know.
She is having to take command of a more than any child should at age 12. She is managing her testing of her blood sugar. She gives herself two insulin injections and two blood thinning injections a day. She pokes her finger 5 times a day , including one at 2:00 a.m.
I feel like I have a new full time job. I guess we are all going to have to ajust to a lot. I just hope I can keep on working. I know what I am doing is important but I need to not think about this all the time. I dug out an unfinished needlepoint. I will be working on that for a while.
Today my goal is to not grind my teeth and try to buy a Blueberry no it's a Blackberry. As M-E noted "Buying technology takes longer than you think."
Wish me luck. Say an extra prayer for remission by day 28. Or September 7th.
Sal
She is having to take command of a more than any child should at age 12. She is managing her testing of her blood sugar. She gives herself two insulin injections and two blood thinning injections a day. She pokes her finger 5 times a day , including one at 2:00 a.m.
I feel like I have a new full time job. I guess we are all going to have to ajust to a lot. I just hope I can keep on working. I know what I am doing is important but I need to not think about this all the time. I dug out an unfinished needlepoint. I will be working on that for a while.
Today my goal is to not grind my teeth and try to buy a Blueberry no it's a Blackberry. As M-E noted "Buying technology takes longer than you think."
Wish me luck. Say an extra prayer for remission by day 28. Or September 7th.
Sal
Saturday, August 28, 2004
When they say it will be a short visit. It is a lie.
So, we are home now. That would mean were have been gone. I went to work on Wednesday A.m. and met Mary-Elizabeth at the Hem/Onc clinic for a nurse visit and an asparagus shot. Well, we were able to come home on Saturday about 3:00 p.m. So much for an hour appointment. We are unpacking and pre-packing for the next time we go for "an hour".
We had to learn how to handle the first of many side-effects of the Chemo. No, she has her hair, her cheeks are not round and rosy, her blood sugar (BS) is elevated and now we are dealing with testing 5 times a day and two insulin shots a day. Oh, well. We are trying to take it in stride.
I am beginning to understand some of the lingo.
a: We will be there soon = before you die we will drop by and chat.
b: I want to keep her overnight= Maybe you will see your home before you die.
c: We will be changing your diet=Have as much sugar and fat as you want.
All and all we are doing great. Work has been great. I am working on working at home. M-E is getting ready for school and will be there as much as possible.
She is off to test her blood sugar right now. What a trooper. She would like everyone to know that her favorite part of this whole process is her One Touch Ultra machine, like on t.v. and getting put to sleep on Monday's for her chemo. She also loves the cards and presents and balloon and good thoughts everyone has been sending.
Week 2 of more than I can count.
I realized this morning that it had been just two weeks. It feels like much more than that.
We had to learn how to handle the first of many side-effects of the Chemo. No, she has her hair, her cheeks are not round and rosy, her blood sugar (BS) is elevated and now we are dealing with testing 5 times a day and two insulin shots a day. Oh, well. We are trying to take it in stride.
I am beginning to understand some of the lingo.
a: We will be there soon = before you die we will drop by and chat.
b: I want to keep her overnight= Maybe you will see your home before you die.
c: We will be changing your diet=Have as much sugar and fat as you want.
All and all we are doing great. Work has been great. I am working on working at home. M-E is getting ready for school and will be there as much as possible.
She is off to test her blood sugar right now. What a trooper. She would like everyone to know that her favorite part of this whole process is her One Touch Ultra machine, like on t.v. and getting put to sleep on Monday's for her chemo. She also loves the cards and presents and balloon and good thoughts everyone has been sending.
Week 2 of more than I can count.
I realized this morning that it had been just two weeks. It feels like much more than that.
Wednesday, August 25, 2004
The real story of August 14th
Well we got up early and drove to Chelan. We stopped for good pancakes on the pass and arrived by noon. The girls settled in and I did some shopping. We napped, we watched a movie and we ate some dinner. Whitney had a headache and a stomach ache that seemed to go away when PeptoBismal was offered.
We went to bed and I got up very early to have some coffee. M-E and Whitney had slept on down stairs couches. M-E went into my room after I was up so she could sleep. I was sitting outside when M-E came storming out and handed me my cell phone.
"Mom, your phone woke me up!!!!!!!!!!! "
Little did I know, that would be the last thing she would say to me in the time before Luuquemia.
It was the voice of Judy Sommerfeld. She is a friend from teaching days. I have known her since 1978. We have always been in touch and seems to spend time during challenging times during our lives.
"Sally, Dr. Garcia from Children's Hospital just called. It is an emergency and you have to call him right away. His number is ........." I hung up and made the call.
"Hi, this Sally Lanham, I am returning a call to a Dr. Garcia"
"Oncology, Garcia." (Can you hear my heart sinking through the earth?)
Deep breath..."This is Sally Lanham. Why are you calling me?"
"Where are you? We need you to return to the hospital immediately."
"We are at the lake." ( Mind on overdrive and nothing making sense.)
"Can we expect you in 30 minutes?" Said with a hopeful tone.
"No, we are at Lake Chelan, at least 4 hours away." (Said with terror coming from a place of deep fear.)
" Please drive directly here. Get here as soon as you can and you will need to be prepared to spend a few nights at the hospital."
"What does she have?"
" I don't want to tell you over the phone."
" You have to tell me. Are we going to do surgery? Should I keep her from eating? What is going on?"
"I don't want to tell you over the phone."
"Please, I need to know."
"She has a form of Lukemmia."
"I will see you as soon as I can."
The rest is a blur. I told the girls we had to leave. I called Belle, my parents and Thomas Kim. I called Johnny and Whitney's parents. I stuffed the stuff into the car, and then I told Mary-Elizabeth she had a blood disorder.
I cried, tried to make conversation, encouraged the girls to sleep and read. I prayed. I was running all the scenarios through my head.
They ran the gamut from: She can not possibility be sick to, will she die before I can get her home. How could I have been so stupid as to take her on vacation?
We arrived at the hospital around 1:00 p.m. They took us directly back. They had me sign some things and then the activity began. Blood draws, questions, people coming in and out. Johnny showed up and told me the doctors were wrong, she could not be sick.
Dr. Dow, age 12, came in and sat down and began and it went something like this:
"We have been trying to contact you. We drew the blood work and found that she had 26,000 white blood cells. 19,000 were what we call Blasts. They are unformed white blood cells. We are running the tests but your daughter has loochemai. There is no doubt. We need to do some other tests to determine what kind it is. That will tell us how she will be treated."
After that there was not much I comprehended. I heard words like:
Now she has 61,000
She will be treated for 2.5 years.
75% cure rate.
Oh, by the way she has a blood clot in her juggler vein.
She will not be having surgery on Friday.
You just go into shock and start making the best decisions you can.
Johnny will spend the night.
Who has to be called.
What do we need to bring from the house.
When do we do the next test, how do we survive this. How do we even comprehend this situation.
It has been so hard because she looked perfectly normal.
I simply left the hospital, and went home to bed.
I was sure she would be okay with Johnny, I was a bit worried that I had not met a single person treating her that looked older than she was. It remains a concern but I am ajusting.
We went to bed and I got up very early to have some coffee. M-E and Whitney had slept on down stairs couches. M-E went into my room after I was up so she could sleep. I was sitting outside when M-E came storming out and handed me my cell phone.
"Mom, your phone woke me up!!!!!!!!!!! "
Little did I know, that would be the last thing she would say to me in the time before Luuquemia.
It was the voice of Judy Sommerfeld. She is a friend from teaching days. I have known her since 1978. We have always been in touch and seems to spend time during challenging times during our lives.
"Sally, Dr. Garcia from Children's Hospital just called. It is an emergency and you have to call him right away. His number is ........." I hung up and made the call.
"Hi, this Sally Lanham, I am returning a call to a Dr. Garcia"
"Oncology, Garcia." (Can you hear my heart sinking through the earth?)
Deep breath..."This is Sally Lanham. Why are you calling me?"
"Where are you? We need you to return to the hospital immediately."
"We are at the lake." ( Mind on overdrive and nothing making sense.)
"Can we expect you in 30 minutes?" Said with a hopeful tone.
"No, we are at Lake Chelan, at least 4 hours away." (Said with terror coming from a place of deep fear.)
" Please drive directly here. Get here as soon as you can and you will need to be prepared to spend a few nights at the hospital."
"What does she have?"
" I don't want to tell you over the phone."
" You have to tell me. Are we going to do surgery? Should I keep her from eating? What is going on?"
"I don't want to tell you over the phone."
"Please, I need to know."
"She has a form of Lukemmia."
"I will see you as soon as I can."
The rest is a blur. I told the girls we had to leave. I called Belle, my parents and Thomas Kim. I called Johnny and Whitney's parents. I stuffed the stuff into the car, and then I told Mary-Elizabeth she had a blood disorder.
I cried, tried to make conversation, encouraged the girls to sleep and read. I prayed. I was running all the scenarios through my head.
They ran the gamut from: She can not possibility be sick to, will she die before I can get her home. How could I have been so stupid as to take her on vacation?
We arrived at the hospital around 1:00 p.m. They took us directly back. They had me sign some things and then the activity began. Blood draws, questions, people coming in and out. Johnny showed up and told me the doctors were wrong, she could not be sick.
Dr. Dow, age 12, came in and sat down and began and it went something like this:
"We have been trying to contact you. We drew the blood work and found that she had 26,000 white blood cells. 19,000 were what we call Blasts. They are unformed white blood cells. We are running the tests but your daughter has loochemai. There is no doubt. We need to do some other tests to determine what kind it is. That will tell us how she will be treated."
After that there was not much I comprehended. I heard words like:
Now she has 61,000
She will be treated for 2.5 years.
75% cure rate.
Oh, by the way she has a blood clot in her juggler vein.
She will not be having surgery on Friday.
You just go into shock and start making the best decisions you can.
Johnny will spend the night.
Who has to be called.
What do we need to bring from the house.
When do we do the next test, how do we survive this. How do we even comprehend this situation.
It has been so hard because she looked perfectly normal.
I simply left the hospital, and went home to bed.
I was sure she would be okay with Johnny, I was a bit worried that I had not met a single person treating her that looked older than she was. It remains a concern but I am ajusting.
ALL is not always soap.
Well, Well, Well. I am back in the office for a few moments. It feels better to be here and pretend I am doing some work. I have to learn to accept baby steps in my life.
I will start trying to catch everyone up on the past couple of weeks. Each post will be dated.
Just know that we have positive attitudes, M-E is responding with gusto to the treatment and we only have 129 weeks to go. We are on day 11 of 910 days of treatment. Oh, God, don't let me do more math for awhile.
The first 6 -9 months are the worst. I will let everyone know if she is in remission. We will have that answer by Friday for sure.
Sal
I will start trying to catch everyone up on the past couple of weeks. Each post will be dated.
Just know that we have positive attitudes, M-E is responding with gusto to the treatment and we only have 129 weeks to go. We are on day 11 of 910 days of treatment. Oh, God, don't let me do more math for awhile.
The first 6 -9 months are the worst. I will let everyone know if she is in remission. We will have that answer by Friday for sure.
Sal
Tuesday, August 17, 2004
Friday the 13th is not our friend.
The short version:
On Friday the 13th they looked at the CBC drawn in preparation for surgery and found 26,000 white blood cells and 19,000 were "Blasts" That = Lewquimia. I will not ever learn to spell that most hated of "L" words.
We are at Children's Hospital and M-E began her Chemo yesterday. 2.5 years from now we will be going to have a really big party. End of treatment day.
E-mail me, leave a message on my cell. Call at home in about a week. E-mail Quilting_goddess@yahoo.com, 206-605-9224, home 206-707-0708. If mom answers just tell her you want to leave a message. This hospital is very difficult to get through to and it is hard to talk about all that is going on with M-E here. I can report that she has a great attitude and has had no ill effects yet. She reported the "This is WAR"
On Friday the 13th they looked at the CBC drawn in preparation for surgery and found 26,000 white blood cells and 19,000 were "Blasts" That = Lewquimia. I will not ever learn to spell that most hated of "L" words.
We are at Children's Hospital and M-E began her Chemo yesterday. 2.5 years from now we will be going to have a really big party. End of treatment day.
E-mail me, leave a message on my cell. Call at home in about a week. E-mail Quilting_goddess@yahoo.com, 206-605-9224, home 206-707-0708. If mom answers just tell her you want to leave a message. This hospital is very difficult to get through to and it is hard to talk about all that is going on with M-E here. I can report that she has a great attitude and has had no ill effects yet. She reported the "This is WAR"
Friday, August 13, 2004
Well We are on Vacation.
We are surviving a Friday the 13th. Everyone knows I am a bit superstitious. I picked M-E up from the airport and she is taller and as brown as a button. They had a great time. I hussled her home and just wanted to do nothing at home for a bit. We had some appointments a Children's hospital. Another MRI, a meeting to sign surgery consents and then to see the anecthiogilst ( my personal way to spell this word. Of course the first guy I ran into was the hated Daniel. He tried to ignore me. Yeah, that lasted for a minute or two. Everything went like clock work. Yes, hospital food is still bad but they work harder at it. Barley Rissoto......
I have to get off this thing. I think it would be more expeditious to write this dribble while not on the internet. I might be using my hostesses long distance. Not a lot of choices over here for connections.
I have to get off this thing. I think it would be more expeditious to write this dribble while not on the internet. I might be using my hostesses long distance. Not a lot of choices over here for connections.
Tuesday, August 10, 2004
One Day Closer
For some reason the plane did not arrive in Houston as planned. They were not able to get a connecting flight. They do not arrive until Noon on Wednesday. Every time I think I have learned the," take it one day at a time lesson" I am "given and opportunity" to learn it again. Let's see where is being patient in my description of life.
I am trying to stay calm. I am failing miserably. Time to go home. A big hearing in the A.M. and then to the airport. I am hoping for some real relaxation.
I am trying to stay calm. I am failing miserably. Time to go home. A big hearing in the A.M. and then to the airport. I am hoping for some real relaxation.
Monday, August 09, 2004
They were in the Air just not soon enough
Well I just received a call from Ruth. They did not get to Houston in time to come home. They will be home tomorrow.
Oh, well. I am going to dinner with Vickie.
Oh, well. I am going to dinner with Vickie.
She will be home Soon.
Well flight 435 is in the air. They are going to be tired and sick and tired of being hot. Oh, well they will be acclimated to heat we are about to have.
I have really really missed M-E these last few days.
No the laundry is not done. No the basement is not sorted and cleaned up. No the yard is not weeded. No the ........... you get the picture. I spent a lot of time just sitting and thinking. I read a good book, I looked for another one. I slept. I tried to be sociable. I discovered that I needed some time to not have to be in charge of anything or anybody. I did go out to dinner a couple of times and even a movie. Did you know movies are $3.00 at the Crest. When did that happen.
I am ready to have my baby home. Really ready. I need to re-connect and make sure she is real. She is such a presence and has such a special spirit. We think that we provide structure for them when I realize that something happens over the years. They come into our lives and dismantle the structure of our worlds and reshape it to fit them. I can tell I have had a full re-fit. My life alone is not what it used to be. I have faith that I could rebuild my BC life ( before child) but it would take a while. I can not just step from one role to another.
Let me tell you what I do know. I know that lots of people are saying lots of good prayers and lots of positive thoughts are headed our way. I know that we will survive anything that comes our way. I also know there are a whole lot of things I don't want to have to "survive".
I went to church yesterday and lit three candles. One for M-E one for Johnny and one for me. Then I asked Mary for a bit of wisdom on how to watch your child go through difficult time. ( I will let you know if I have any incite.) Then I tried to sit down. Some person told me that the seat was taken. Now it was a completely vacant row but I was not welcome. At that juncture, I thought, well, so much for going to church and feeling better about things and stormed out. As I was driving to my office I realized how very touchy I am and that I needed to not deal with anyone. Nowwas is reasonable for a happy family to want to sit together? absolutely. Was I over reacting? of course. Was it better for me to be alone in my office for a few hours? Most certainly.
Is it okay to need some time and space, yes. I think being in church with a baptism going on would have been hard. Solitude is sometimes a good thing.
I have really really missed M-E these last few days.
No the laundry is not done. No the basement is not sorted and cleaned up. No the yard is not weeded. No the ........... you get the picture. I spent a lot of time just sitting and thinking. I read a good book, I looked for another one. I slept. I tried to be sociable. I discovered that I needed some time to not have to be in charge of anything or anybody. I did go out to dinner a couple of times and even a movie. Did you know movies are $3.00 at the Crest. When did that happen.
I am ready to have my baby home. Really ready. I need to re-connect and make sure she is real. She is such a presence and has such a special spirit. We think that we provide structure for them when I realize that something happens over the years. They come into our lives and dismantle the structure of our worlds and reshape it to fit them. I can tell I have had a full re-fit. My life alone is not what it used to be. I have faith that I could rebuild my BC life ( before child) but it would take a while. I can not just step from one role to another.
Let me tell you what I do know. I know that lots of people are saying lots of good prayers and lots of positive thoughts are headed our way. I know that we will survive anything that comes our way. I also know there are a whole lot of things I don't want to have to "survive".
I went to church yesterday and lit three candles. One for M-E one for Johnny and one for me. Then I asked Mary for a bit of wisdom on how to watch your child go through difficult time. ( I will let you know if I have any incite.) Then I tried to sit down. Some person told me that the seat was taken. Now it was a completely vacant row but I was not welcome. At that juncture, I thought, well, so much for going to church and feeling better about things and stormed out. As I was driving to my office I realized how very touchy I am and that I needed to not deal with anyone. Nowwas is reasonable for a happy family to want to sit together? absolutely. Was I over reacting? of course. Was it better for me to be alone in my office for a few hours? Most certainly.
Is it okay to need some time and space, yes. I think being in church with a baptism going on would have been hard. Solitude is sometimes a good thing.
Friday, August 06, 2004
Along the Lines of "They Don't Tell You Everything"
A friend of mine dropped by yesterday. She works at a hospital. She was talking about a teenager she had been working with for the last three years. He has some type of lung disease. She recently purchased a new vehicle and had a 1991 Honda Civic. She heard he was looking for a car. She sold him the car for $200.00. Her boyfriend was angry with her because she had essentially given him the car. ( We are hoping he becomes an ex-boy friend.)
The teenager comes from a poor family and is in desperate need of a lung transplant but can not get on the list because of his family's housing and financial situation. He will die within a year or two without new lungs. Evidently the criteria for the such things as transplants is much more than the health of the patient. Sometimes I don't want to have another lesson on how life is not fair.
The teenager comes from a poor family and is in desperate need of a lung transplant but can not get on the list because of his family's housing and financial situation. He will die within a year or two without new lungs. Evidently the criteria for the such things as transplants is much more than the health of the patient. Sometimes I don't want to have another lesson on how life is not fair.
Thursday, August 05, 2004
Words from the Doctor
I asked the doctor how long it would take for the biopsy results to be back. See why these guys make you crazy
"They give a preliminary result immediately.
After about 3 or 4 days, the first round comes back, which sometimes makes the diagnosis.
If they need special tests to make a final diagnosis, then it can be 1 or, 2wk, or even longer if it is ‘unusual’.
You would want a couple of weeks for things to heal before any other treatment (such as steroid injection) were considered, so the pathology delay isn't usually a problem. "
"They give a preliminary result immediately.
After about 3 or 4 days, the first round comes back, which sometimes makes the diagnosis.
If they need special tests to make a final diagnosis, then it can be 1 or, 2wk, or even longer if it is ‘unusual’.
You would want a couple of weeks for things to heal before any other treatment (such as steroid injection) were considered, so the pathology delay isn't usually a problem. "
I Sucommed to the Krispy Kreams
They don't fill you up. What a surprise. I did have some milk so that was almost dinner........
I did decide today that I could take some time this A.M. and just sit outside in my new garden room and read and drink some coffee. That was a good choice. It was starting to rain a bit and was very cozy. We might be spending lots of time out there. I figure that the furniture will rot but then oh well. It will take a bit of time.
I tried to buy a new purse yesterday. I sometimes fail at retail therapy. I have looked and looked and then looked some more. The world is very brown and full of fringe and big buckles. Coach bags are no longer made of leather and look like everyone else's. So what is a girl to do. I went to Nordstrom. Yes, my sister will snicker. I hate Nordies. I hate the snotty girls that try to sell you things you don't want. ( No I do not need 64 ounces of eye cream. I forgot to draw on my house line of credit.) But I did see a very nice red leather purse. Large, shiny, new leather smell. I then the women behind the counter was so busy calling "customers" on the phone, I walked away. I was very unhappy about my failure. There must be another purse out there somewhere.
I did decide today that I could take some time this A.M. and just sit outside in my new garden room and read and drink some coffee. That was a good choice. It was starting to rain a bit and was very cozy. We might be spending lots of time out there. I figure that the furniture will rot but then oh well. It will take a bit of time.
I tried to buy a new purse yesterday. I sometimes fail at retail therapy. I have looked and looked and then looked some more. The world is very brown and full of fringe and big buckles. Coach bags are no longer made of leather and look like everyone else's. So what is a girl to do. I went to Nordstrom. Yes, my sister will snicker. I hate Nordies. I hate the snotty girls that try to sell you things you don't want. ( No I do not need 64 ounces of eye cream. I forgot to draw on my house line of credit.) But I did see a very nice red leather purse. Large, shiny, new leather smell. I then the women behind the counter was so busy calling "customers" on the phone, I walked away. I was very unhappy about my failure. There must be another purse out there somewhere.
Wednesday, August 04, 2004
I Want Unending Krispy Kremes
This is a strange week. No responsibilities and yet the laundry is not done. Maybe having more to do than you can do makes you do more. I did take out the garbage and did a load of towels. See, I am getting some things done.
I am going to wallow for a few more days before I have to be the one that keeps everything going forward on a constructive and positive note. Translation: I will not feel guilty for reading only People Magazine. I will not be self-critical about not having organized all the basement. I will not feel guilty if dinner is only left overs and gellato. I do get to go to Krispy Kreme at least once.
With the help of my neighbor Mike, I have created this great outdoor room where the hot tub used to be. I need to find a good book to absorb me. My friend Judy from Idaho sent me Lance Armstrong's book "Every Second Counts." I was strangely compelled to read it. I learned a lot about ADHD in adults and about the Tour D'France. He has some interesting things to say and is very positive. I had decided to hate him because he dumped his wife and three children for a rock star. I ended up liking him in the end. I am going to the bookstore for a good book at lunch.
Oh, I found the skirt that caused the melt down. It was in strange but logical place. We have too much stuff. I am considering throwing away all the spare socks and buying new ones. I need a new purse. I have spent the summer hauling around a lime green gel bag. It is dying and now I don't think I can go back to my black leather coach bag.
I am going to wallow for a few more days before I have to be the one that keeps everything going forward on a constructive and positive note. Translation: I will not feel guilty for reading only People Magazine. I will not be self-critical about not having organized all the basement. I will not feel guilty if dinner is only left overs and gellato. I do get to go to Krispy Kreme at least once.
With the help of my neighbor Mike, I have created this great outdoor room where the hot tub used to be. I need to find a good book to absorb me. My friend Judy from Idaho sent me Lance Armstrong's book "Every Second Counts." I was strangely compelled to read it. I learned a lot about ADHD in adults and about the Tour D'France. He has some interesting things to say and is very positive. I had decided to hate him because he dumped his wife and three children for a rock star. I ended up liking him in the end. I am going to the bookstore for a good book at lunch.
Oh, I found the skirt that caused the melt down. It was in strange but logical place. We have too much stuff. I am considering throwing away all the spare socks and buying new ones. I need a new purse. I have spent the summer hauling around a lime green gel bag. It is dying and now I don't think I can go back to my black leather coach bag.
Monday, August 02, 2004
I Am Just Being Mean to Everyone.
My neighbor Mike asked me to be involved in a garage sale. Well it sounded like a good idea at the time. I always have these great plans. Organize all the closets, sort all the pictures and 10 years of school work. Weed the garden. Solve world hunger.......
So the day arrived. His stuff was organized, sorted, polished, marked,....You get the picture. Mine was haphazardly grabbed from the basement. Not priced, not even wiped off. I went on the offensive and yelled at him and told him if he said one thing about how my stuff looked scruffy, I was going home. (I find most men don't like to be yelled at by bossy women.)
We had the sale. I was brutal. The first guy was a dealer that wanted to spend 10 cents on a $20.00 book marked a $1.00. He received the full blast of my 6 weeks of pent up fear, frustration, anger, and disappointment. I don't think he will come visit anytime soon.
It only went downhill from there. They made me sit in a corner, read a book and would not let me talk to anyone. We made more than $350.00.
So the day arrived. His stuff was organized, sorted, polished, marked,....You get the picture. Mine was haphazardly grabbed from the basement. Not priced, not even wiped off. I went on the offensive and yelled at him and told him if he said one thing about how my stuff looked scruffy, I was going home. (I find most men don't like to be yelled at by bossy women.)
We had the sale. I was brutal. The first guy was a dealer that wanted to spend 10 cents on a $20.00 book marked a $1.00. He received the full blast of my 6 weeks of pent up fear, frustration, anger, and disappointment. I don't think he will come visit anytime soon.
It only went downhill from there. They made me sit in a corner, read a book and would not let me talk to anyone. We made more than $350.00.
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