To My Honorable Government Representative:
I am writing this to you to draw your attention to the great personal difficulty of my Wife and me. My Wife Ann has been diagnosed with a very rare form of Acute Lymphoblastic Leukemia. We left our home, family and jobs in Baton Rouge Louisiana so that she can receive treatment at M.D. Anderson Cancer Center in Houston, Texas. Her physicians have stated that she must receive an unrelated blood/bone marrow stem cell transplant, for any chance of a cure. Due to Ann’s heritage, which is mixed race Asian and Caucasian, locating a suitable donor for her is problematic and has thus far been unsuccessful. Therefore, the recommended treatment for her is to receive an umbilical cord blood transplant as soon as possible before her leukemia relapses and kills her. This is expected to happen in the next few months.
Her employer, Harolds Stores Inc. (Harolds), provides her health insurance through Private Healthcare Systems (PHCS). This is in turn administered by The EPOCH Group. Both have agreed that her condition qualifies her for an unrelated or allogeneic stem cell transplant. However, they are denying her claim because they state that allogeneic cord blood transplants are experimental. In addition they may have violated her rights by not permitting her to file more than one appeal on this matter, or seek independent medical review.
Harolds is a clothier and is not qualified to make medical decisions or determine the necessity of medical procedures. Harolds and EPOCH are refusing her plea for service on the grounds that they are unable to pass the cost of the transplant onto the reinsurer. By doing so, they are forcing Ann into lesser treatments which the Doctors at M.D. Anderson estimate have only the slimmest chance of survival.
While Ann has not found a donor through the National Marrow Donor Program or a foreign country, it does not mean her condition is hopeless. Cord blood has proved to be as efficacious as Bone Marrow and is a well-regarded option for treating leukemia. In addition, Cord blood transplantation with adults is a growing practice within medical centers in the United States. Cord blood can prove to be a life saving miracle for those people, especially for minorities like my Wife, who are critically under represented among marrow donors.
The contact information for Harolds management is:
Harolds Stores Inc. (Corporate Office)
5919 Maple Avenue
Dallas, TX 75273
(214)-366-0600
Harolds Stores Inc. (Financial Office)
765 Asp Avenue
Norman, OK 73069
(405)-329-4045
Tuesday, April 3, 2007
Day 82
I know we promised some good news today, but things didn't turn out quite the way that we had anticipated. We had a meeting at the stem cell clinic, and it was an opportunity to meet my new transplant doctor. All of the stem cell doctors met to discuss my case and he relayed what they had concluded. Unfortunately, we are still tangled up in the insurance debacle. Please be patient, and we may be able to share some good news depending on the outcome of some things. It's frustrating, I know, but imagine how I feel.
I'm going to be going into the hospital today for round 5 of chemo. I'll admit that I can feel a tantrum brewing, because I don't want to go back into the hospital. I started going stir crazy in round 4. It's just that you go from living a somewhat normal existence, all things considered, and then you go to wearing a backless gown, eating off of a restricted menu, with people coming in to check on you every two hours 24 hours a day. I've had a nurse's assistant wake me up at 4AM to weigh me. Imagine waking up and being faced with a scale, with the expectation that you're coordinated enough to get out of a bed with guard rails and manage to stand on a platform for 60 seconds while your weight is being taken. The only plus that I've discovered about having your weight taken in the wee hours of the morning is that you don't weigh as much. That's the only recompense that I can think of.
I find that I'm impatient for things to move forward. I'm absolutely sick to pieces of being told that without a transplant that I'll die. Got it. Trust me, the first time I heard it, it was imprinted permanently on my brain. I know that I need to have a BMT or an umbilical cord stem cell transplant in order to survive. I'd love for the people in charge of green lighting my insurance to pull their heads out of certain orifices and see the light.
Today, I learned that a certain person in charge of managing my file at a place that shall go unnamed was getting testy with my stem cell social worker and the woman in charge of the business office at MDA. Let's call the testy person Kitty, since I don't think she'd appreciate being named outright. As it was told to me, she was adamant that my advocates at MDA were pushing me into the decision for a stem cell transplant using umbilical cord blood. Let me set the record straight right now. I am absolutely insulted that she thought that I would be stupid enough to let people tell me that I needed this procedure without doing quite a bit of research on my own. Kitty, I have met you and until this insurance nightmare, I had the highest respect for you. I am quite versed in the difference between a BMT and a stem cell transplant using umbilical cord blood. I can quote statistics and potential outcomes until you pass out from boredom. Chris is so versed in the topic, he can finish the doctor's sentences. I would never let a person tell me that I needed to do something without doing a little research first. How dare you. I am far from an idiot and don't appreciate being spoken of as one. Raising your voice to speak over someone doesn't make you right, it just shows that you don't have a valid argument to refute what you're being told. I know from experience that Kitty is intelligent and thoughtful and quick to solve a problem. I'm just surprised at her reactions to my situation.
As things stand, I have my orders to be admitted to the hospital. I'm tempted to burn them and go back to the apartment. I won't, because Chris would just wheel me up to the twelfth floor and tell them to set me up. He's the best thing that's ever happened to me and I don't know what I did to deserve him. I'm glad I did whatever it was. He's quit his job and uprooted his life to take care of me 24/7, and he hasn't complained. He's got quite a few more gray hairs as a result of this experience and I'm sorry for it. He didn't deserve to be put through this and I regret it.
Update
Very long and bad day...funny stuff is on hold until round 5 is over.
I know we promised some good news today, but things didn't turn out quite the way that we had anticipated. We had a meeting at the stem cell clinic, and it was an opportunity to meet my new transplant doctor. All of the stem cell doctors met to discuss my case and he relayed what they had concluded. Unfortunately, we are still tangled up in the insurance debacle. Please be patient, and we may be able to share some good news depending on the outcome of some things. It's frustrating, I know, but imagine how I feel.
I'm going to be going into the hospital today for round 5 of chemo. I'll admit that I can feel a tantrum brewing, because I don't want to go back into the hospital. I started going stir crazy in round 4. It's just that you go from living a somewhat normal existence, all things considered, and then you go to wearing a backless gown, eating off of a restricted menu, with people coming in to check on you every two hours 24 hours a day. I've had a nurse's assistant wake me up at 4AM to weigh me. Imagine waking up and being faced with a scale, with the expectation that you're coordinated enough to get out of a bed with guard rails and manage to stand on a platform for 60 seconds while your weight is being taken. The only plus that I've discovered about having your weight taken in the wee hours of the morning is that you don't weigh as much. That's the only recompense that I can think of.
I find that I'm impatient for things to move forward. I'm absolutely sick to pieces of being told that without a transplant that I'll die. Got it. Trust me, the first time I heard it, it was imprinted permanently on my brain. I know that I need to have a BMT or an umbilical cord stem cell transplant in order to survive. I'd love for the people in charge of green lighting my insurance to pull their heads out of certain orifices and see the light.
Today, I learned that a certain person in charge of managing my file at a place that shall go unnamed was getting testy with my stem cell social worker and the woman in charge of the business office at MDA. Let's call the testy person Kitty, since I don't think she'd appreciate being named outright. As it was told to me, she was adamant that my advocates at MDA were pushing me into the decision for a stem cell transplant using umbilical cord blood. Let me set the record straight right now. I am absolutely insulted that she thought that I would be stupid enough to let people tell me that I needed this procedure without doing quite a bit of research on my own. Kitty, I have met you and until this insurance nightmare, I had the highest respect for you. I am quite versed in the difference between a BMT and a stem cell transplant using umbilical cord blood. I can quote statistics and potential outcomes until you pass out from boredom. Chris is so versed in the topic, he can finish the doctor's sentences. I would never let a person tell me that I needed to do something without doing a little research first. How dare you. I am far from an idiot and don't appreciate being spoken of as one. Raising your voice to speak over someone doesn't make you right, it just shows that you don't have a valid argument to refute what you're being told. I know from experience that Kitty is intelligent and thoughtful and quick to solve a problem. I'm just surprised at her reactions to my situation.
As things stand, I have my orders to be admitted to the hospital. I'm tempted to burn them and go back to the apartment. I won't, because Chris would just wheel me up to the twelfth floor and tell them to set me up. He's the best thing that's ever happened to me and I don't know what I did to deserve him. I'm glad I did whatever it was. He's quit his job and uprooted his life to take care of me 24/7, and he hasn't complained. He's got quite a few more gray hairs as a result of this experience and I'm sorry for it. He didn't deserve to be put through this and I regret it.
Update
Very long and bad day...funny stuff is on hold until round 5 is over.
Monday, April 2, 2007
Grand Day Out...sort of
Day 81
Sorry about the lack of substantial update yesterday. Many gears are turning and many things are happening.
Today was a unique day for Ann all around. She slept late for a change and wanted to run some errands with me out of the apartment. The sleeping late is unusual because ever since her 1st round of chemo she is on "hospital time". That's measured in the span of time between a nurse waking you up to take your vitals and you being able to get back to sleep. Also, Ann tries to stay as hydrated as she possibly can, so that doesn't help with peaceful rest much.
After waking up I needed to run to Target (one of the only stores in Houston I can reliably get to and then back from) and Ann wanted to come with me. Her last CBC (Complete Blood Count) said she was no longer neutropenic so I agreed. Proper precautions still needed to be taken however. She would still have to wear a mask in public, there would be no touching anyone, no standing near groups of more than three people and if there were children around she had to get away from them immediately.
Target wasn't very busy before lunch and we didn't see many people at all (except for near the Easter candy). Ann said she felt alien walking around in a new place. Target may seem mundane to you or me, but Ann has seen nothing except the inside of MD Anderson or our charity apartment for 80 days. People by and large reacted to her as an alien presence also. People would go out of their way to give her a very, very wide berth and most didn't make direct eye contact or even smile.
Ann has been reading Charlaine Harris' book "Definitely Dead" (not crazy about the title) for the past two days and went back to reading it while I set up our new HP 5600 fax/printer/copier. I am sick and tired of having to go to MDA and pay to park if I want to fax something. So the HP should take care of that and allow us to send Ann's story to new corners of the media.
Tomorrow Ann is going back in for round 5. To bring you up to speed if you are new, right now we would be going in to start her transplant if her Employer Funded Health Plan could understand that "Medical Necessity" means "Service or treatment deemed absolutely necessary in treating a patient and the omission of such could adversely affect the patient's condition". Or that "Necessity" is an imperative defined as "essential, inevitable, inescapable, predetermined, compulsory, absolutely needed, required" by Webster's dictionary. I digress...
Tomorrow Ann will be restaged before being readmitted into the hospital for another round of Doxorubicin. A restaging is essentially what they do to new patients when they first come in to MD Anderson. Blood work and lots of it. Bone Marrow Aspirations. Lumbar Punctures. X-rays looking for solid leukemia tumors in the body cavity and breasts (yes it's creepy that leukemia can do that in addition to all the rotten things it can do already). Lumbar Punctures looking for leukemia cells in the central nervous system (this one scares me to death).
After all that we have a very special meeting. I know I have teased it, but everyone will need to be patient for a day or so more.
Plus, Ann has something funny planned to take the edge off, and hopefully make a few of you chuckle or at least smile a little.
See you tomorrow.
Sorry about the lack of substantial update yesterday. Many gears are turning and many things are happening.
Today was a unique day for Ann all around. She slept late for a change and wanted to run some errands with me out of the apartment. The sleeping late is unusual because ever since her 1st round of chemo she is on "hospital time". That's measured in the span of time between a nurse waking you up to take your vitals and you being able to get back to sleep. Also, Ann tries to stay as hydrated as she possibly can, so that doesn't help with peaceful rest much.
After waking up I needed to run to Target (one of the only stores in Houston I can reliably get to and then back from) and Ann wanted to come with me. Her last CBC (Complete Blood Count) said she was no longer neutropenic so I agreed. Proper precautions still needed to be taken however. She would still have to wear a mask in public, there would be no touching anyone, no standing near groups of more than three people and if there were children around she had to get away from them immediately.
Target wasn't very busy before lunch and we didn't see many people at all (except for near the Easter candy). Ann said she felt alien walking around in a new place. Target may seem mundane to you or me, but Ann has seen nothing except the inside of MD Anderson or our charity apartment for 80 days. People by and large reacted to her as an alien presence also. People would go out of their way to give her a very, very wide berth and most didn't make direct eye contact or even smile.
Ann has been reading Charlaine Harris' book "Definitely Dead" (not crazy about the title) for the past two days and went back to reading it while I set up our new HP 5600 fax/printer/copier. I am sick and tired of having to go to MDA and pay to park if I want to fax something. So the HP should take care of that and allow us to send Ann's story to new corners of the media.
Tomorrow Ann is going back in for round 5. To bring you up to speed if you are new, right now we would be going in to start her transplant if her Employer Funded Health Plan could understand that "Medical Necessity" means "Service or treatment deemed absolutely necessary in treating a patient and the omission of such could adversely affect the patient's condition". Or that "Necessity" is an imperative defined as "essential, inevitable, inescapable, predetermined, compulsory, absolutely needed, required" by Webster's dictionary. I digress...
Tomorrow Ann will be restaged before being readmitted into the hospital for another round of Doxorubicin. A restaging is essentially what they do to new patients when they first come in to MD Anderson. Blood work and lots of it. Bone Marrow Aspirations. Lumbar Punctures. X-rays looking for solid leukemia tumors in the body cavity and breasts (yes it's creepy that leukemia can do that in addition to all the rotten things it can do already). Lumbar Punctures looking for leukemia cells in the central nervous system (this one scares me to death).
After all that we have a very special meeting. I know I have teased it, but everyone will need to be patient for a day or so more.
Plus, Ann has something funny planned to take the edge off, and hopefully make a few of you chuckle or at least smile a little.
See you tomorrow.
Sunday, April 1, 2007
Family Photos
Ann and her Ba Ngoai (Grandmother)
Ann with some of her family in San Jose
Ann's Uncle Binh, Ba Ngoai and a friend of the Family
Ba Ngoai , Ann, Ma Hai, and Ann's cousin
Ann and her Uncle Loi at Fisherman's Warf
Aunt Kim and Ann
Saturday, March 31, 2007
The color red will be important to you.
Day 79
I'm sorry this post is so late, we had appointments and I ended up needing another baby bottle of magnesium. We had to wait for an hour for it and after that we had to fill some prescriptions. While we were waiting for the baby bottle, we made a new friend. Chris and I kept seeing him in the leukemia clinic since day one. Today he came up and introduced himself. His name is Carl and he has Burketts Lymphoma. The treatment for it is similar to leukemia, so his lymphoma doctor sent him up to the leukemia wing. He also now sees Dr. Thomas. He's in remission and that's wonderful news. We also met a gentleman from Houma, LA. He's got AML and is also being treated by Dr. Thomas. Small world.
I had a very pleasant surprise yesterday. A friend that I haven't seen in three years surprised me by dropping by. Matt and I worked together years ago and he is a very dear person. He took my mind off things by making me laugh and catching me up on what he's been up to. Ladies, he's single. ;)
I'm still having headaches, but I sincerely think that they are now stress induced. The left side of my neck is so tight, it hurts to move it around. I keep telling myself that I need to relax. One of these days, I'll figure out how to do that.
I'm happy to report that my blood counts are coming up. They've reached the point that I'm allowed to have raw vegetables. Quite frankly, I'm sick of eating out of cans. We celebrated by getting Chinese take-out. I had to wait out in the car, since I still can't be around large groups of people. It was wonderful to eat something that didn't come out of the freezer or a can.
About the title of this posting; it's what was in my fortune cookie. I'm sure it will make sense one day
I'm going to try to keep any bad news to a minimum, because quite frankly, I'm sick of hearing it and reporting it.
I'm sorry this post is so late, we had appointments and I ended up needing another baby bottle of magnesium. We had to wait for an hour for it and after that we had to fill some prescriptions. While we were waiting for the baby bottle, we made a new friend. Chris and I kept seeing him in the leukemia clinic since day one. Today he came up and introduced himself. His name is Carl and he has Burketts Lymphoma. The treatment for it is similar to leukemia, so his lymphoma doctor sent him up to the leukemia wing. He also now sees Dr. Thomas. He's in remission and that's wonderful news. We also met a gentleman from Houma, LA. He's got AML and is also being treated by Dr. Thomas. Small world.
I had a very pleasant surprise yesterday. A friend that I haven't seen in three years surprised me by dropping by. Matt and I worked together years ago and he is a very dear person. He took my mind off things by making me laugh and catching me up on what he's been up to. Ladies, he's single. ;) I want to thank Ann T., Matt, and Fort for their generous gifts. You guys shouldn't have. It is far too generous and Chris and I are thankful. When this is all over and we get back, we have to get together. Chris is quite the gourmet chef and he can make dinner while we catch up over a bottle of wine. If there is anything that any of you might need, please, ask. We'd be happy to do it.
I'm still having headaches, but I sincerely think that they are now stress induced. The left side of my neck is so tight, it hurts to move it around. I keep telling myself that I need to relax. One of these days, I'll figure out how to do that.
I'm happy to report that my blood counts are coming up. They've reached the point that I'm allowed to have raw vegetables. Quite frankly, I'm sick of eating out of cans. We celebrated by getting Chinese take-out. I had to wait out in the car, since I still can't be around large groups of people. It was wonderful to eat something that didn't come out of the freezer or a can.About the title of this posting; it's what was in my fortune cookie. I'm sure it will make sense one day
Friday, March 30, 2007
Kim Jong il Sucks!
Day 78
Hello everyone. Today we have no appointments at MDA so it's going to be an uneventful post. I can report that Ann has been suffering from some headaches, Her Doctor thinks that this may be hormones from the lupren shots, but I think it's stress brought on by everything we have been through in the last couple of days.
Headaches are also a primary symptom of leukemia relapse so they are discussing if we need to do an MRI to look for cancer in her CNS. All of the lumbar punctures that she has had to endure up to this point have turned up clear and free from malignant cells. A pretty good sign but far from a complete guarantee that it isn't there.
I wanted to mention that I noticed a young couple (Husband and Wife) on the bus coming home from MDA yesterday, and they look like they are just starting. The woman has leukemia, I think and the Husband is wearing the semi-permanent scowl that I had when Ann first got here. I wanted to say hello to them but, it just seemed really awkward and then the opportunity was gone. I really hope we get a chance again. They both look like they could use someone to talk to.
I know that things have been kinda dreary on the blog here (CBT, Appeal, Denial) so we have decided to have a little fun. Ann has something planned for next week that she thinks you'll all like. Right now though, I wanted everyone to see how Ann imagines her leukemia cells.
Yes that's right...Lil' Kim from Team America: World Police, millions and millions of him .... only microscopic!
Lastly I want to add there is some news at MD Anderson which we are encouraged about. We hope to be able to share it with you Tuesday.
Hello everyone. Today we have no appointments at MDA so it's going to be an uneventful post. I can report that Ann has been suffering from some headaches, Her Doctor thinks that this may be hormones from the lupren shots, but I think it's stress brought on by everything we have been through in the last couple of days.
Headaches are also a primary symptom of leukemia relapse so they are discussing if we need to do an MRI to look for cancer in her CNS. All of the lumbar punctures that she has had to endure up to this point have turned up clear and free from malignant cells. A pretty good sign but far from a complete guarantee that it isn't there.
I wanted to mention that I noticed a young couple (Husband and Wife) on the bus coming home from MDA yesterday, and they look like they are just starting. The woman has leukemia, I think and the Husband is wearing the semi-permanent scowl that I had when Ann first got here. I wanted to say hello to them but, it just seemed really awkward and then the opportunity was gone. I really hope we get a chance again. They both look like they could use someone to talk to.
I know that things have been kinda dreary on the blog here (CBT, Appeal, Denial) so we have decided to have a little fun. Ann has something planned for next week that she thinks you'll all like. Right now though, I wanted everyone to see how Ann imagines her leukemia cells.
Yes that's right...Lil' Kim from Team America: World Police, millions and millions of him .... only microscopic!
Lastly I want to add there is some news at MD Anderson which we are encouraged about. We hope to be able to share it with you Tuesday.
Thursday, March 29, 2007
Where things stand
This is to bring everyone upto date on where things stand at this point.
It has come to my attention through discussions with State and Federal Agencies that the party responsible for the denial of Ann's appeal is probably Harold's.
Harold's has expressed to me that they are concerned the content of this blog reflects negatively on them.
We withdraw all statements we have posted on line about other organizations involved, as I recognize them to be most likely inaccurate at this point. Those posts will be deleted or redacted.
It has come to my attention through discussions with State and Federal Agencies that the party responsible for the denial of Ann's appeal is probably Harold's.
Harold's has expressed to me that they are concerned the content of this blog reflects negatively on them.
We withdraw all statements we have posted on line about other organizations involved, as I recognize them to be most likely inaccurate at this point. Those posts will be deleted or redacted.
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