M-E has to have an MRI on the 12th of August and then we meet with the Nurse practioner and sign all the documents. Then we meet with the anethisialogist. That is when have to explain why certain doctors can not treat my daughter. That should be a fun thing to do. Do you think they will remember that I subpoenaed all of them for a deposition?
Oh well.
Twenty Years, Two Hundred and Forty Months, Seven Thousand Days, and Three Hundred Days. Since we started chasing Leukemia.
Blog Archive
-
▼
2004
(110)
-
▼
July
(11)
- Today they are making me crazy!!!!!!!!!!!!!!!!!!
- Waiting Makes Me Crazy
- M-E is in Eugene Oregon with Grampa John and Grama...
- Well Fredrica does not have any friends. Translat...
- So I sent the wrong passport......
- I think Frederica = Pluto
- Choices, are they really a good thing?
- Cracks are Appearing
- She and Frederica are gong to Mexico Today
- Mom Made It all Better.
- Okay, this might really be the final plan
-
▼
July
(11)
Friday, July 30, 2004
Thursday, July 29, 2004
Mom Made It all Better.
Well my stomach gave a tug when I sent M-E down the path to security. I know in my heart that she will go seek big hair, have a great time snorkeling and enjoy each and every day on her trip. She is well taken care of and loved by all those she is traveling with to Houston and Mexico. I was still worried. Then I called my mom and Mom did what Moms are supposed to do. She made it all better. She announced that she was no longer worried about M-E being so far away. She told me that David, my corporate pilot brother would fly to where ever M-E is and bring her home. So David is 3- 4 hours from Cozumel and not to worry.
So everyone keep praying, don't burn down any churches and do lots of sleeping.
So everyone keep praying, don't burn down any churches and do lots of sleeping.
Wednesday, July 28, 2004
She and Frederica are gong to Mexico Today
Well, how do I feel about that? Well, given the heat and her mood I am more than happy that she is going with friends on an adventure. I have warned her that there is lots of big meat, cars with long horns, lots of cowboy boots and big hair. She thought I meant car horns. I think she will also be surprised by what she is going to see in Cozumel. It is very different than Mazatlan. Her 2000 pesos will not go as far as usual.
I am also worried about the trip. I am not a hovering mom but then even I have bouts of clingyness. I hope I can make the most of the time she is gone. I would love to not think about what has been happening and assume the cloak of being normal.
So, one more day........
I am also worried about the trip. I am not a hovering mom but then even I have bouts of clingyness. I hope I can make the most of the time she is gone. I would love to not think about what has been happening and assume the cloak of being normal.
So, one more day........
Monday, July 26, 2004
Cracks are Appearing
MOM I CAN'T FIND MY FAVORITE SKIRT!!!!!!!!!!!!!!!!!!!!!!
Meltdown. One of many. Maybe it was just too much activity. Maybe it was the need of lunch. Maybe it was the culmination of all the "stuff" that has gone on this summer. She just hit a breaking point. I came back with some pretty stiff penalties for continuing bad behavior like no television. At some point she just melted into a mass of tears and wailing. I held her tight. Tried to reassure her that there had been lots of good about this summer and that there was more to come. She was finally able to sleep for 13 hours.
So, the answer to "How is Mary-Elizabeth taking all of this?" would be "
Well we have had better weeks with some good ones to come. "
I have changed my game plan. It helps me to talk about all of it. It doesn't help her. As long as she knows what is going to happen down the roads she does not need to hear all the details. So Today I just don't intend to answer the phone or discuss any of this in her presence. She needs to be able to let it slip to the nether reaches of her mind.
The next couple of days need to be about letting her have a great time in Houston and Cozumel. it should be fun.
Meltdown. One of many. Maybe it was just too much activity. Maybe it was the need of lunch. Maybe it was the culmination of all the "stuff" that has gone on this summer. She just hit a breaking point. I came back with some pretty stiff penalties for continuing bad behavior like no television. At some point she just melted into a mass of tears and wailing. I held her tight. Tried to reassure her that there had been lots of good about this summer and that there was more to come. She was finally able to sleep for 13 hours.
So, the answer to "How is Mary-Elizabeth taking all of this?" would be "
Well we have had better weeks with some good ones to come. "
I have changed my game plan. It helps me to talk about all of it. It doesn't help her. As long as she knows what is going to happen down the roads she does not need to hear all the details. So Today I just don't intend to answer the phone or discuss any of this in her presence. She needs to be able to let it slip to the nether reaches of her mind.
The next couple of days need to be about letting her have a great time in Houston and Cozumel. it should be fun.
Friday, July 23, 2004
Choices, are they really a good thing?
At dinner with Thomas Kim ( only doctor I know that just happens to be a good friend of mine and a neuro radiologist) mentioned that Dr. Ojammen has been discussing M-E's case with his oncology buds at Children's Hospital. (Yes, I am thrilled that her case is seeping into more departments.) There seems to be the thought that maybe...... just maybe..... they should do a biopsy and see what Frederica is before they try to move her from her happy home.
If she has one thing, eosinophilic granuloma, it can be treated with radiation and then it it does not get smaller it can be removed but then maybe it won't be invading the sagittal sinus( vein on top of head) or maybe it will go away. If it is something else like any icky bone cancer thing then we do surgery and remove and then get to do Chemo and radiation.
Okay, which is the good answer?
So here is the prayer for the week-end:
Thank God for great blessings and graces. I don't know what I would do if I did not have a place to light candles and leave my prayers and worries. Thank God for good, loving and supportive friend, family, colleagues, understanding clients and judges and espresso guys that I am mean to when I am stressed. Thank God for great parents that have taught us how to get through hard times. Thank God for a number of hard situations over the years that have taught me that life goes on and things happen for a reason and there is light somewhere, once you find the tunnel. Thank God for siblings that remind me to have a sense of humour. Thank God most of all for the chance to be a parent and to understand how deeply love can be for another person.
If she has one thing, eosinophilic granuloma, it can be treated with radiation and then it it does not get smaller it can be removed but then maybe it won't be invading the sagittal sinus( vein on top of head) or maybe it will go away. If it is something else like any icky bone cancer thing then we do surgery and remove and then get to do Chemo and radiation.
Okay, which is the good answer?
So here is the prayer for the week-end:
Thank God for great blessings and graces. I don't know what I would do if I did not have a place to light candles and leave my prayers and worries. Thank God for good, loving and supportive friend, family, colleagues, understanding clients and judges and espresso guys that I am mean to when I am stressed. Thank God for great parents that have taught us how to get through hard times. Thank God for a number of hard situations over the years that have taught me that life goes on and things happen for a reason and there is light somewhere, once you find the tunnel. Thank God for siblings that remind me to have a sense of humour. Thank God most of all for the chance to be a parent and to understand how deeply love can be for another person.
Thursday, July 22, 2004
I think Frederica = Pluto
Mother paranoia is a bad thing. It is like hearing a mosquito and then starting to itch without being bitten. M-E and Whitney came back from Eugene. They have had too much fun. Both just wanted to go home. I felt M-E's head and am certain Frederica has grown but maybe not.
This is a thing that has not even been known to us for a month and now it rules our universe. Maybe it will just go away or morph into something else like Pluto has.
Is Pluto still a planet? Do we care, do we need to know? How did we know it was a planet in the first place. What is the definition of a planet. Well Frederica has been subject to the same type of speculation.
Oh, I see something that tells me there might be something else. Let's send a probe.
Oh, there it is! It might be........... ( Insert your own long list of incompressible words that only scare you when you look them up on the Net) Oh, let's send another probe. Oh, now we see, see, there it is, it might not be ( Again insert list.) Heavy sigh of relief. But it might be ( new list that is even more scary.) Let's try again...... Repeat a few more time.
When you really ask the answer is : Well we don't know what it really is but will when they go "Where no person has gone before."
This is a thing that has not even been known to us for a month and now it rules our universe. Maybe it will just go away or morph into something else like Pluto has.
Is Pluto still a planet? Do we care, do we need to know? How did we know it was a planet in the first place. What is the definition of a planet. Well Frederica has been subject to the same type of speculation.
Oh, I see something that tells me there might be something else. Let's send a probe.
Oh, there it is! It might be........... ( Insert your own long list of incompressible words that only scare you when you look them up on the Net) Oh, let's send another probe. Oh, now we see, see, there it is, it might not be ( Again insert list.) Heavy sigh of relief. But it might be ( new list that is even more scary.) Let's try again...... Repeat a few more time.
When you really ask the answer is : Well we don't know what it really is but will when they go "Where no person has gone before."
Wednesday, July 21, 2004
So I sent the wrong passport......
Well I held on to the hope I was beginning to cope with everything. I was spending time at work, the laundry was done, M-E was getting a good dose of summer fun.
The girls are coming back on the train on Thursday. I had made all arrangements and then realized they need identification. M-E had her student ID but Whitney did not have anything. I obtained Whitney's passport and then sent M-E's for good measure.
Dad called this morning. Evidently I sent my passport. I thing that says it all. Oh well, so much for the illusion of everything being okay. It's not a disaster just a small hole in the wing.
I can report some hopeful news. The Korean Hornbeam that was de-leafed by lack of water is putting out it's second set of leaves. Often there is more life left than you realize.
The girls are coming back on the train on Thursday. I had made all arrangements and then realized they need identification. M-E had her student ID but Whitney did not have anything. I obtained Whitney's passport and then sent M-E's for good measure.
Dad called this morning. Evidently I sent my passport. I thing that says it all. Oh well, so much for the illusion of everything being okay. It's not a disaster just a small hole in the wing.
I can report some hopeful news. The Korean Hornbeam that was de-leafed by lack of water is putting out it's second set of leaves. Often there is more life left than you realize.
Monday, July 19, 2004
Well Fredrica does not have any friends. Translation, the bone scan is clean. They were worried her head bump was bone cancer and would have had to come fr0m someother place in her body and she is clean. The bone scan did show very active bone plates. Translation, she is not done growing. 6' here we come.
We should be home free until the surgery. She has some great things to do between now and then. Trips to waterski in Eastern Washington, Houston and Mexico on the Verhoff Family vacation and then we are going for a week to Lake Chelan. Mom and Dad are coming up from Eugene on the the 17 th and then the surgery is the 19th. We are all going to try and keep busy until we have to do the deed.
Until then I am working like crazy.
sal
We should be home free until the surgery. She has some great things to do between now and then. Trips to waterski in Eastern Washington, Houston and Mexico on the Verhoff Family vacation and then we are going for a week to Lake Chelan. Mom and Dad are coming up from Eugene on the the 17 th and then the surgery is the 19th. We are all going to try and keep busy until we have to do the deed.
Until then I am working like crazy.
sal
M-E is in Eugene Oregon with Grampa John and Grama Mary. I needed to have her somewhere she could get a good dose of possitive energy from my mother and good family stories from my dad. Grandparents add another layer to kid's lives. I wonder what the world will be like without the Depression Generation. My dad did farm with a team of horses. He did learn to castrate sheep and milk cows and gather honey from hives and the list goes on. I guess our children will talk about their mothers having to go to the grocery store and having a 24" television. They will tell stories of having to dial numbers and having homes where the computer was not built in or having to do such mundane things like take out the garbage.
Oh, God, where did that come from, see I am a bit distracted. I must get back to work. Suffice it to say, we are still in a holding pattern. I am lighting candles like crazy. I am no less nervouse or concerned, just numb. I am craving things like meat loaf sandwiches and I am gonig to buy a new television. Please know, I am not loosing my hearing, the sound is going out of my 17 year old t.v.
Oh, God, where did that come from, see I am a bit distracted. I must get back to work. Suffice it to say, we are still in a holding pattern. I am lighting candles like crazy. I am no less nervouse or concerned, just numb. I am craving things like meat loaf sandwiches and I am gonig to buy a new television. Please know, I am not loosing my hearing, the sound is going out of my 17 year old t.v.
Friday, July 16, 2004
Waiting Makes Me Crazy
I hate to wait. I hate not knowing. I wonder if I should push for an earlier surgery and totally screw up M-E's summer or if I should let it go as planned? How important is her state of mind during all of this. I can assure you her approach to all of this is great. One hears that kids are in inspiration. Maybe we should try to get back to that place where the situation is what the situation is and go from there. No speculationg, no spinning of worse case scenarios, no deep and abiding fear of the unknown but rather a simple this is the plan.
I don't want to be wrong here. Do I trust the bevey of highly educated professionsals that know what they are doing? Do I just worry and let the event unfold? Do I ask too many questions? I am going to try that trusting thing. That "I am not in control of my destiny but rather I am here for a purpose and to learn some important and valuable lessons." Don't fight it, just let it unfold.
Off to listen to a hearing at the Court of Appeals. Mary-Elizabeth is off picking blue berries.
I don't want to be wrong here. Do I trust the bevey of highly educated professionsals that know what they are doing? Do I just worry and let the event unfold? Do I ask too many questions? I am going to try that trusting thing. That "I am not in control of my destiny but rather I am here for a purpose and to learn some important and valuable lessons." Don't fight it, just let it unfold.
Off to listen to a hearing at the Court of Appeals. Mary-Elizabeth is off picking blue berries.
Thursday, July 15, 2004
Today they are making me crazy!!!!!!!!!!!!!!!!!!
Today I have the challenge of going to two different "imaging" places at Swedish Hospital. Thus far we have been to Seattle Radiology, they have two locations, and Swedish Radiology, Nuclear Medicine Department . Let us not get any of those places confused with Seattle nuclear Radiology. I have to find the file rooms and then explain to them what I need and see if they can find the films.
What ever person named their child Mary-Elizabeth Sierra Lanham should be shot. Oh, yeah that was I.
What ever person named their child Mary-Elizabeth Sierra Lanham should be shot. Oh, yeah that was I.
Subscribe to:
Posts (Atom)