First of all: INSURANCE COMPANIES SUCK!!
(No offense intended to anyone who works for an insurance company...unless you are one of their fat cat CEOs)
This has been a day of the run around. Charlotte's catheterization was probably the easiest part of the whole day (and that wasn't all that peachy).
The short of it is: we will not begin chemo tomorrow. Instead, we are doing whatever we can to figure out what the insurance company will and will not cover and what our next options might be.
Dr. Khan is working with us and will do whatever he can to set an appeal that allows us to stay at MCV. I have also spoken with someone at Care Connection (thanks for the advice!) and they are going to try to help us navigate this process including figuring out exactly what the insurance company is and is not willing to do right now (Dr. Khan and I keep getting different answers from different people) and what we can do to get what Charlotte needs. The tricky part is that we do not have a lot of time. Her cancer is very aggressive and we need to start treatment sooner rather than later. We can't waste time with appeals. We have a "short list" of hospitals where Charlotte can get care. All are reputable but all are far from home (the closest still being Duke).
A friend of ours who works at the Library of Congress is planning to hand deliver copies of our letters to our Senators in Washington DC. I will be revising the previous letter with updated information. We shall see what happens. (Thanks Ginny!)
In the meantime, please direct your prayers to our advocates and physicians as well as to giving us the time we need to make this happen.
Somehow we are still holding it all together. Roger is working his heinie (sp?) off at Romp n' Roll and I apologize publicly for giving him major distractions yesterday and today. I have not been the most helpful spouse the last two days. I am home with the cathetered princess who has been such a brave and strong little girl today!
A few bits of good news: her follow up with the orthotic specialist was great and we may not need the brace much longer. She is also on a "regular" schedule and not needing laxatives. We do still have a fiber/flax rich diet but that doesn't hurt anyone, does it? :-)
PLUS: It's Wednesday which means it's LOST night. Also means it's Business Time. If you don't know what that means, go see Flight of the Conchords. Ha ha!! (That one's for Roger)!
A new batch of bracelets were delivered to Romp n' Roll today if anyone "local" needed to pick some up.
HUGS to all,
Rachel
Wednesday, March 4, 2009
Insurance Dance Continues
Charlotte got the catheter this morning and Rachel says she was very brave. She also got the baseline set for her hearing (let’s hope it doesn’t change much).
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.
Roger
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.
Roger
MCV an In-Network Provider
Good news: I got a message from Dr. Khan today that he is working on some paperwork that will (hopefully) allow us to use MCV as an in-network provider with our insurance. Keep your fingers crossed. Even if we get "our way" with this, it still drives me crazy that the insurance companies force us to jump through hoops just to get the care we need. Sheesh.
Off to MCV again tomorrow for tests and the insertion of a catheter for the urine sample. Thursday is the big day (hopefully).
I am tired so will make this short but she has had a great couple of days. Roger and I actually talked with her a little today about what the next few days have in store for her. She seems to understand (to the extent she can) and asks us lots of questions. We are definitely deep into the "why" phase of life. Her latest "bit" is to ask "what kind?".
An example:
"Mom, where are we going?"
Romp n' Roll
"What kind of Romp n' Roll?"
The one at Virginia Center
"What kind of Virginia Center?
Etc. etc.
It can get a little tedious. But oh is she adorable!
Gotta go catch some zzzzsssss
Off to MCV again tomorrow for tests and the insertion of a catheter for the urine sample. Thursday is the big day (hopefully).
I am tired so will make this short but she has had a great couple of days. Roger and I actually talked with her a little today about what the next few days have in store for her. She seems to understand (to the extent she can) and asks us lots of questions. We are definitely deep into the "why" phase of life. Her latest "bit" is to ask "what kind?".
An example:
"Mom, where are we going?"
Romp n' Roll
"What kind of Romp n' Roll?"
The one at Virginia Center
"What kind of Virginia Center?
Etc. etc.
It can get a little tedious. But oh is she adorable!
Gotta go catch some zzzzsssss
Monday, March 2, 2009
Funny Anecdotes
Two funny Charlotte anecdotes from today:
1) She was sitting on the couch and had one of her "monumental poops" and after she was finished, she raises both legs in the air and says, "Hey mom does it stink?" NICE.
2) As we were changing our clothes from a jaunt out in the snow, Charlotte noticed my bracelet and said, "Why are you wearing that, mom?". I said, "So everyone will know that I'm your mom." She replied (with I think as much sarcasm as a 3.5 year old can muster), "I think everyone knows that you're my mom." I really think if she knew better, she would have rolled her eyes as well just for effect!
Too funny!
1) She was sitting on the couch and had one of her "monumental poops" and after she was finished, she raises both legs in the air and says, "Hey mom does it stink?" NICE.
2) As we were changing our clothes from a jaunt out in the snow, Charlotte noticed my bracelet and said, "Why are you wearing that, mom?". I said, "So everyone will know that I'm your mom." She replied (with I think as much sarcasm as a 3.5 year old can muster), "I think everyone knows that you're my mom." I really think if she knew better, she would have rolled her eyes as well just for effect!
Too funny!
Grassroots Activism!
You gotta love grassroots activism! Many of you have shared that you have passed along your own letters of support to government officials. Please feel free to contact our VA reps (if you live here in VA), President Obama, and other reps (if you live in other states) on our behalf. I have posted links to the websites of our Senators, Representative, and the White House on the LINKS page. There are Contact pages on all of these websites where you can send emails as well as "snail mail" addresses and phone numbers for those who wish to make contact that way.
We have had a somewhat lazy morning with the snow. Charlotte got out and got to "stomp around". Unfortunately, the snow was more powdery than we expected and not so good for snowmen. We will post pics soon (hopefully).
Gotta go help Roger change Charlotte's dressing. Fun!
Stay warm everyone!
Rachel
We have had a somewhat lazy morning with the snow. Charlotte got out and got to "stomp around". Unfortunately, the snow was more powdery than we expected and not so good for snowmen. We will post pics soon (hopefully).
Gotta go help Roger change Charlotte's dressing. Fun!
Stay warm everyone!
Rachel
Letter to Our Senator
A switch back to the snowflakes because WOW is it ever snowing in Richmond! We will be making a snowman in the yard tomorrow for sure!Thanks again for the letters, ideas, and reassurances regarding our insurance issues. Our church friends, Lee and Susan Chambers, have already begun a letter writing campaign on our behalf to Senator Mark Warner and it has inspired me to do the same. I am copying below the text of a letter I submitted to Senator Warner via his website. I may send copies to Senator Webb, President Obama, and a few other folks as well. If people want to get involved, I encourage you to write to your respective legislators. Share our story. Share YOUR story (many of you have commiserated with your own insurance woes). Our representatives need these stories to create reasonable and just policies around health care in this country. I can only hope that this will help other families down the line so that they don't have to travel circuitous routes such as using patient advocates, calling billing offices, and arguing with insurance companies just to get the care that is best for their children. Here is my letter:
March 1, 2009
Dear Senator Warner,
I am writing to you on behalf of one of your youngest constituents. On January 20, 2009, as President Obama was taking the oath of office, my 3 year old daughter, Charlotte Jennie, was in the hospital receiving the diagnosis of a brain tumor. The tumor was pervasive in her brain and judged to be about the size of a large orange. Within 2 weeks, she had undergone two craniotomies to remove as much of the malignancy as the surgeons could safely take. After 3 weeks in the hospital, Charlotte is fortunately home and progressing well with the physical and occupational therapy that was needed due to the effects of both the tumor and the surgeries on her motor skills. Now we are in the process of removing the rest of the cancerous cells with chemotherapy. Through all of this, my husband and I actually feel relatively blessed. We have a wonderful social support system surrounding us. Our friends and family have showered us with hugs, gifts, meals, and prayers. The doctors tell us that Charlotte’s prognosis is good even though we know the road ahead of us will be long. We feel extremely lucky to live close enough to Richmond to receive the best care possible at a hospital such as the Medical College of Virginia (MCV) and we are constantly amazed by the skill and technology available to the physicians and other health care workers who heal our daughter on a daily basis. The proximity to the hospital has enabled my husband and I to continue working (albeit in a more limited capacity). This is especially important because we are both self-employed and are struggling as many businesses are right now to keep our household as well as our business afloat in the current economic climate.As small business owners, we had purchased individual insurance to cover our entire family. Since we are all relatively healthy, we opted for a high deductible plan that would provide for regular wellness but sufficiently covers our needs in a case such as this. Until last week, we felt very comfortable with everything our insurance would provide. We had not met with any denials for care or logistical hurdles. We had discussed plans for Charlotte’s care with her doctors and they had drafted out a road map of chemotherapy, possible radiation, and stem cell transplants that would take from 6-12 months. Her first round of chemotherapy is scheduled to begin March 5.Imagine my surprise when I received a call from the insurance company telling me that while my daughter’s main health care needs could be met at MCV, the stem cell collection and transplant services that she will require throughout this process would need to be handled at a different hospital because MCV was not considered to be “in-network” for our insurance. In fact, the closest hospital for this service is at Duke in North Carolina, a four-hour drive from our home. Because of this, in the midst of my daughter’s chemotherapy treatments, we will now somehow have to coordinate care between MCV and Duke. We will need to uproot my daughter and at least one of us (myself or my husband) to travel miles away from our home in order to harvest her stem cells (three times, after each initial chemotherapy treatment) and then somehow coordinate her transplants during the three high-dose chemotherapy treatments she will need to receive down the line. We will need to get to know a new set of doctors who will need to coordinate treatment with the MCV team and make sure that everything stays consistent for our daughter’s care. All the while, MCV has the staff, knowledge and ability to provide this level of care and services for my daughter. They are simply not “allowed” to because MCV is not considered a part of their “network”. We plan to do whatever we can to fight this decision made by the insurance company. We plan to discuss this situation with MCV and see if they are willing to negotiate with the insurance company so that our daughter’s care can stay in her hometown. My question to you is why should this even be an issue? At the moment, all of our energy is running towards the care of our daughter. I do not have the time to negotiate with insurance companies. I do not have the energy to fight more than my daughter’s cancer. As President Obama and Congress begin to tackle the many issues surrounding the health care system in our country, I would like for you to consider our family’s story as one example of how the insurance companies have taken control of health care when the control should be given to the hospitals who hire physicians with the training and expertise to know what is best for their patients. We would like you to also consider those families who have not been nearly as lucky as ours. We know another Hanover County family whose beautiful six-year old daughter (Reese) began her fight with a brain tumor only two weeks before Charlotte’s. The Klauer family has been met with denials from their insurance company over the physician’s recommended protocols. They have been forced into “battle” with the insurance companies to get the best care for their daughter.Finally, please consider the many families we have met while at MCV whose stories are far from blessed. We saw children who were alone in the hospital on a daily basis because their parents had to choose between keeping their job and staying with their sick child. We met families who had no choice but to wait until their children got “sick enough” to come to the emergency room because they had no insurance for wellness care. Through this process, I have realized that within our current insurance system, my daughter will need to constantly remain insured in some way for the rest of her life because of what will now be considered a “pre-existing condition”. Any gap in coverage would surely result in denials of coverage and/or exorbitant premiums on the part of most insurance companies. Is my daughter less deserving of affordable health care throughout her life because she met Cancer before her fourth birthday?The saddest part in all of this is that many of these cases seem to boil down to insurance companies denying health care coverage for seemingly arbitrary reasons. I see no reason why the insurance company could not pay MCV just as easily as Duke for any stem cell transplant services provided to our daughter. There is no good reason for uprooting a family and disrupting a treatment plan simply because of insurance company decisions. As a friend said to us, “"If our insurance industry would stop spending a large fraction of our premiums figuring out how not to provide coverage, we'd not have these problems."Last week, I received a treasured gift from a close friend: a necklace with a small circle pendant that has the word “BELIEVE” etched into the circle. It carries so much meaning for me right now. I BELIEVE that the physicians and health care workers will use their expertise to provide the best care for my daughter. I BELIEVE in God and the power of prayer and I know that belief will help us get through this crisis in our lives. I BELIEVE that my daughter will find the strength and the will to see through to the other side of cancer. Finally, I BELIEVE that our government will work to create sound and equitable health care policies that will allow American citizens of all ages, economic levels, and abilities to receive the very best care available to them without fear of bankruptcy, future denial of coverage, or lack of choice in how they receive that care. As you move forward with President Obama and your fellow legislators, please think of my daughter’s story. Please share our story with your fellow Senators and other policymakers. It is my hope that stories such as ours will be the foundation for lasting, positive change for the citizens of our nation.
Sincerely,Rachel Reynolds Ashland, Virginia
March 1, 2009
Dear Senator Warner,
I am writing to you on behalf of one of your youngest constituents. On January 20, 2009, as President Obama was taking the oath of office, my 3 year old daughter, Charlotte Jennie, was in the hospital receiving the diagnosis of a brain tumor. The tumor was pervasive in her brain and judged to be about the size of a large orange. Within 2 weeks, she had undergone two craniotomies to remove as much of the malignancy as the surgeons could safely take. After 3 weeks in the hospital, Charlotte is fortunately home and progressing well with the physical and occupational therapy that was needed due to the effects of both the tumor and the surgeries on her motor skills. Now we are in the process of removing the rest of the cancerous cells with chemotherapy. Through all of this, my husband and I actually feel relatively blessed. We have a wonderful social support system surrounding us. Our friends and family have showered us with hugs, gifts, meals, and prayers. The doctors tell us that Charlotte’s prognosis is good even though we know the road ahead of us will be long. We feel extremely lucky to live close enough to Richmond to receive the best care possible at a hospital such as the Medical College of Virginia (MCV) and we are constantly amazed by the skill and technology available to the physicians and other health care workers who heal our daughter on a daily basis. The proximity to the hospital has enabled my husband and I to continue working (albeit in a more limited capacity). This is especially important because we are both self-employed and are struggling as many businesses are right now to keep our household as well as our business afloat in the current economic climate.As small business owners, we had purchased individual insurance to cover our entire family. Since we are all relatively healthy, we opted for a high deductible plan that would provide for regular wellness but sufficiently covers our needs in a case such as this. Until last week, we felt very comfortable with everything our insurance would provide. We had not met with any denials for care or logistical hurdles. We had discussed plans for Charlotte’s care with her doctors and they had drafted out a road map of chemotherapy, possible radiation, and stem cell transplants that would take from 6-12 months. Her first round of chemotherapy is scheduled to begin March 5.Imagine my surprise when I received a call from the insurance company telling me that while my daughter’s main health care needs could be met at MCV, the stem cell collection and transplant services that she will require throughout this process would need to be handled at a different hospital because MCV was not considered to be “in-network” for our insurance. In fact, the closest hospital for this service is at Duke in North Carolina, a four-hour drive from our home. Because of this, in the midst of my daughter’s chemotherapy treatments, we will now somehow have to coordinate care between MCV and Duke. We will need to uproot my daughter and at least one of us (myself or my husband) to travel miles away from our home in order to harvest her stem cells (three times, after each initial chemotherapy treatment) and then somehow coordinate her transplants during the three high-dose chemotherapy treatments she will need to receive down the line. We will need to get to know a new set of doctors who will need to coordinate treatment with the MCV team and make sure that everything stays consistent for our daughter’s care. All the while, MCV has the staff, knowledge and ability to provide this level of care and services for my daughter. They are simply not “allowed” to because MCV is not considered a part of their “network”. We plan to do whatever we can to fight this decision made by the insurance company. We plan to discuss this situation with MCV and see if they are willing to negotiate with the insurance company so that our daughter’s care can stay in her hometown. My question to you is why should this even be an issue? At the moment, all of our energy is running towards the care of our daughter. I do not have the time to negotiate with insurance companies. I do not have the energy to fight more than my daughter’s cancer. As President Obama and Congress begin to tackle the many issues surrounding the health care system in our country, I would like for you to consider our family’s story as one example of how the insurance companies have taken control of health care when the control should be given to the hospitals who hire physicians with the training and expertise to know what is best for their patients. We would like you to also consider those families who have not been nearly as lucky as ours. We know another Hanover County family whose beautiful six-year old daughter (Reese) began her fight with a brain tumor only two weeks before Charlotte’s. The Klauer family has been met with denials from their insurance company over the physician’s recommended protocols. They have been forced into “battle” with the insurance companies to get the best care for their daughter.Finally, please consider the many families we have met while at MCV whose stories are far from blessed. We saw children who were alone in the hospital on a daily basis because their parents had to choose between keeping their job and staying with their sick child. We met families who had no choice but to wait until their children got “sick enough” to come to the emergency room because they had no insurance for wellness care. Through this process, I have realized that within our current insurance system, my daughter will need to constantly remain insured in some way for the rest of her life because of what will now be considered a “pre-existing condition”. Any gap in coverage would surely result in denials of coverage and/or exorbitant premiums on the part of most insurance companies. Is my daughter less deserving of affordable health care throughout her life because she met Cancer before her fourth birthday?The saddest part in all of this is that many of these cases seem to boil down to insurance companies denying health care coverage for seemingly arbitrary reasons. I see no reason why the insurance company could not pay MCV just as easily as Duke for any stem cell transplant services provided to our daughter. There is no good reason for uprooting a family and disrupting a treatment plan simply because of insurance company decisions. As a friend said to us, “"If our insurance industry would stop spending a large fraction of our premiums figuring out how not to provide coverage, we'd not have these problems."Last week, I received a treasured gift from a close friend: a necklace with a small circle pendant that has the word “BELIEVE” etched into the circle. It carries so much meaning for me right now. I BELIEVE that the physicians and health care workers will use their expertise to provide the best care for my daughter. I BELIEVE in God and the power of prayer and I know that belief will help us get through this crisis in our lives. I BELIEVE that my daughter will find the strength and the will to see through to the other side of cancer. Finally, I BELIEVE that our government will work to create sound and equitable health care policies that will allow American citizens of all ages, economic levels, and abilities to receive the very best care available to them without fear of bankruptcy, future denial of coverage, or lack of choice in how they receive that care. As you move forward with President Obama and your fellow legislators, please think of my daughter’s story. Please share our story with your fellow Senators and other policymakers. It is my hope that stories such as ours will be the foundation for lasting, positive change for the citizens of our nation.
Sincerely,Rachel Reynolds Ashland, Virginia
Sunday, March 1, 2009
Spring is coming!
Thanks for all the email responses. I think we have all our current child care needs covered! Y'all are awesome!Not much too report. We are all tired and playing "hooky" from church today. Going to try to enjoy a day that doesn't involve going to therapy or too much work. Roger headed up later to a rehearsal and I'm working a birthday party. Charlotte apparently sleeping in (as it is now 8:45 AM!). She went to bed late so she's probably tired.Hope everyone stays warm and dry as this front moves through. Roger saw daffodils blooming at a synagogue in South Richmond yesterday. Crazy! Spring is coming!
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