Greetings faithful friends and prayer warriors,
I guess it is well over due for an update on Amelia. Most of you know that Amelia is in desperate need of a bone marrow transplant. What you may or may not know is that we are in the fight of a life time to get her to the hospital that is the best in the world to treat her rare disease. We have worked with University of Minnesota for nearly 8 years now, after all it is where Marshall our oldest son received his transplant 7 years ago. Well things have change a bit in 7 years. The hospital no longer wants to accept Amelia as a patient because she does not have enough insurance coverage. Her cap for her transplant with our current insurance is only $300,000.00, the hospital in Mn estimates the cost to approach somewhere near $800,000.00.
So this is where we are, our insurance is a self funded insurance company run by the Louisiana Sheriff's association, we are trying, begging and pleading with them to raise that cap for her up to either 750k or 800k. They have that ability because they are self funded, it is do they want to? Amelia needs to go to transplant like yesterday, yes there is another hospital that we could use and don't get me wrong they are on the back burner as a back up in the event that we hit every brick wall that we cross, but this hospital (Cincinnati) just does not live up to Minnesota's success rate, right now Minnesota has a 100% survival rate for children 10 and under!! ( Amelia is 10 and will be 11 in June) Cincinnati has lost about 6 children with Fanconi Anemia with in the last 7 months, I just don't want to be there. I am not saying that Amelia will have a sure 100% survival rate, because there is only one who knows that. I am trusting in Him to lead us down the right road and I know that He will be there for us no matter where we go, but also feel that He is wanting us to fight to get her to the best place possible and not to give up yet.
We have taken her out of school and placed her on hospital home bound. Her counts are just too low for me to allow her to be in school with out close supervision. We want her "healthy" meaning free from any kind of colds, flues or viruses. That in it self is a challenge for me!! She is a very social butterfly and well I can only handle so many I'm boards. ;)
I am writing again to ask for you prayers on several fronts. First and foremost for Amelia and her health and that she can hold out long enough for us to fight and get to Minnesota. Her current counts are not great at all and dangerously low, but we will check them again on Monday and if they are still low we will need to move to get her a red cell transfusion and if that happens she will need surgery to insert a port into her chest in which to receive them. Second that this fight with the hospital and the insurance comes through for her SOON! That those that sit on the Louisiana Sheriff's association has a heart and realize that they are making a life or death decision for an innocent child. Strength for me to keep pushing to get her the very best care in the country and knowledge to know when the time has come to get her anywhere and comfort for me know that I am doing the very best that I can for her and her health and just for any and all decisions that I have to make that I make the right ones and don't second guess my self with them! I thank each and every one of you in advance for your prayers, they truly mean a lot to our family.
Please feel free to forward this email to your friends, family or any one.
Thank you.
Trusting in Him,
Kelly & Tyren Bennett
Marshall, Amelia and Nathan
Well a lot has happened since the last time I updated. A little with the insurance, we have the hospital and Louisiana Sheriffs Association (we think) in negotiations. The hospital came up with a price for the LSA to view and approve? Now weather they will approve it or not is a big question. The board meets on February 4th. We should know with in a week or so after that if they are going to increase her cap. Please pray that they make this come true for her.
Reason being......we can no longer wait to move to transplant. She needs to go! If the board approves her we will be leaving in about the middle of March for this transplant to happen....her counts have seriously fallen, not what I was expecting in the least bit at all. We are checking her hgb weekly. At last count her hgb had dropped to 6.8. I am trying to keep her as still as possible easier said than done. I have been a roller coaster of emotions.
Amelia meet her teacher and has started her school work. The hardest part of us is trying to get her to understand that she just can't do things like she use too. We try to avoid crowded areas with her, again easier said than done.
Thursday, January 27, 2011
Monday, January 10, 2011
Fight of a lifetime.....
Greetings friends, prayer warriors and faithful followers,
I'm not really sure of where to start here. First let me just start by saying, We have come to the decision that it is time to pull Amelia out of school. It was a tough decision, but with her current counts and knowing that transplant is, one way or another, 6 months away, it was a much needed choice. She hasn't been too sick and we want to keep it that way and we know that this is cold and flu season. We just want to avoid her from getting anything that could hinder her health or the transplant for that fact. So prayers there are needed all the way around.
on to the second front, the insurance, we are still fighting to get this child the coverage she needs to get to Minnesota for her transplant. We need to get to Minnesota, in my heart and soul that is where I know that she will have the best chance at surviving. With that being said, I was in conversation with Dr Wagner and we were talking about some of the new Obama laws that have been taking affect. One of which is the law stating:
Restriction On Annual Dollar Coverage Limits
In general, employer plans can't impose annual coverage limits of less than $750,000 for "essential" health benefits, including hospital services, drugs, emergency services and maternity and newborn care. The maximum limits increase every year and they are eliminated in 2014. These limits apply to new individual policies, too.
Additional provisions take effect on or after Sept. 23 for new plans offered by employers or purchased by individuals since March 23. These include requirements that insurers:
--Cover the full cost of preventive services that have the highest recommendation of the U.S. Preventive Services Task Force.
--Allow women to see an OB-GYN without a referral.
--Do not make plan members pay higher co-payments or coinsurance for out-of-network emergency services.
For more information about the provisions that take effect for plan years beginning on or after Sept. 23, go to healthcare.gov.
Now from my understanding of reading this means that as of September 23 2010 when our policy renews in July that her transplant cap should be increased to $750,000. So trying to figure that out we called the Sheriff's office department of health ins trying to see if they new if that was indeed the case, because if that is our goal date than we would do all we could do to keep Amelia "healthy" and be ready to go to transplant at that time.
Well this is when we go fired up, the insurance rep that we talked to said she didn't know that she would call the Louisiana Sheriff's association's rep/liaison and see what she could come up with. Well below is a copy of the email that I received from her....
Mrs. Bennett,
Below is the response I got from the LSA's representative:
"As of now, nothing has changed. Therefore, if she tried to get an approval - BCBSLA would deny and so would the LSA. And since the Bennett's have exhausted their 1st level and 2nd level appeals regarding this benefit - they have no other channels to go unless they wish to obtain an attorney and sue the LSA.
As far as the max being lifted this renewal - as you may know, the Obama gunk has several issues and each issue has a different date to be effective through 2014. I have no idea if the "lifting of maximums" is scheduled for this year or in 2012, 2013 or 2014. As soon as I/the LSA know(s), each parish will be made aware.
Sorry I could not offer any "better" news for the Bennett's but as of now, there is nothing they can do."
I'm really sorry. If I hear or find out anything else, I will let you know. Our prayers are with your family.
Sincerely,
Well that just put gas on the fire for me! First I have no idea how we have exhausted our first and second level appeals. If calling and asking them to let us use her lifetime maximum is an appeal well then they need to re-look at their policies! The to flat out state that we have nothing left to do but to get an attorney and sue them!! What a cold hearted bitch to have written this!!! To tell a parent that no you can't do anything about it, to have to sit and watch your child dying. How cruel can some one be. If this was going to be her response I think she could have and should have done it with a little more tact!!! I am so beyond pissed right now. We immediately called the sheriff to request a meeting with him in hopes that he may have some kind of info for us and to also inform him that we are going to the media with this, the insurance commissioner and where ever else need be if it comes down to an attorney then so be it!!!
She called the laws, Obama gunk, but more importantly isn't it her job to know these things. I, just a stupid house wife and mom, found the law why can't they. They are hoping that we are going to crawl under a rock so they can get out of paying anything...well this mamma isn't going away. I'm taking Amelia with me to every meeting that we have. The first one up is the Sheriff tomorrow, and if we get the chance to appeal in front of the sheriff's association she will be there front and center to look all those old retired sheriff's in the eye and have them tell her no!!! They are going to tell it to me they are going to tell them no there is nothing that we can do to give you a fighting chance at saving your life!! If they can sit there and tell an innocent child that they can not or rather WILL not help, then they are not men at all!!!!
you look at this face and then have the guts to tell her no there is nothing we can do to help you fight for your life....
We have a fight on our hands so, I am asking for some much needed prayers. Prayers for this to resolve in our favor so that Amelia can get her need transplant in Minnesota where they have a 100% survival rate for children under 10 years old. Prayer for Amelia's health and counts to continue to hold till we get the answers we need, pray for my sanity and for the strength, and wisdom to keep the fight going, not just for my child but all children who are not receiving the proper care because the insurance companies just wanna make their pocketbooks fatter!!
Thank you so very much.
Blessings,
I'm not really sure of where to start here. First let me just start by saying, We have come to the decision that it is time to pull Amelia out of school. It was a tough decision, but with her current counts and knowing that transplant is, one way or another, 6 months away, it was a much needed choice. She hasn't been too sick and we want to keep it that way and we know that this is cold and flu season. We just want to avoid her from getting anything that could hinder her health or the transplant for that fact. So prayers there are needed all the way around.
on to the second front, the insurance, we are still fighting to get this child the coverage she needs to get to Minnesota for her transplant. We need to get to Minnesota, in my heart and soul that is where I know that she will have the best chance at surviving. With that being said, I was in conversation with Dr Wagner and we were talking about some of the new Obama laws that have been taking affect. One of which is the law stating:
Restriction On Annual Dollar Coverage Limits
In general, employer plans can't impose annual coverage limits of less than $750,000 for "essential" health benefits, including hospital services, drugs, emergency services and maternity and newborn care. The maximum limits increase every year and they are eliminated in 2014. These limits apply to new individual policies, too.
Additional provisions take effect on or after Sept. 23 for new plans offered by employers or purchased by individuals since March 23. These include requirements that insurers:
--Cover the full cost of preventive services that have the highest recommendation of the U.S. Preventive Services Task Force.
--Allow women to see an OB-GYN without a referral.
--Do not make plan members pay higher co-payments or coinsurance for out-of-network emergency services.
For more information about the provisions that take effect for plan years beginning on or after Sept. 23, go to healthcare.gov.
Now from my understanding of reading this means that as of September 23 2010 when our policy renews in July that her transplant cap should be increased to $750,000. So trying to figure that out we called the Sheriff's office department of health ins trying to see if they new if that was indeed the case, because if that is our goal date than we would do all we could do to keep Amelia "healthy" and be ready to go to transplant at that time.
Well this is when we go fired up, the insurance rep that we talked to said she didn't know that she would call the Louisiana Sheriff's association's rep/liaison and see what she could come up with. Well below is a copy of the email that I received from her....
Mrs. Bennett,
Below is the response I got from the LSA's representative:
"As of now, nothing has changed. Therefore, if she tried to get an approval - BCBSLA would deny and so would the LSA. And since the Bennett's have exhausted their 1st level and 2nd level appeals regarding this benefit - they have no other channels to go unless they wish to obtain an attorney and sue the LSA.
As far as the max being lifted this renewal - as you may know, the Obama gunk has several issues and each issue has a different date to be effective through 2014. I have no idea if the "lifting of maximums" is scheduled for this year or in 2012, 2013 or 2014. As soon as I/the LSA know(s), each parish will be made aware.
Sorry I could not offer any "better" news for the Bennett's but as of now, there is nothing they can do."
I'm really sorry. If I hear or find out anything else, I will let you know. Our prayers are with your family.
Sincerely,
Well that just put gas on the fire for me! First I have no idea how we have exhausted our first and second level appeals. If calling and asking them to let us use her lifetime maximum is an appeal well then they need to re-look at their policies! The to flat out state that we have nothing left to do but to get an attorney and sue them!! What a cold hearted bitch to have written this!!! To tell a parent that no you can't do anything about it, to have to sit and watch your child dying. How cruel can some one be. If this was going to be her response I think she could have and should have done it with a little more tact!!! I am so beyond pissed right now. We immediately called the sheriff to request a meeting with him in hopes that he may have some kind of info for us and to also inform him that we are going to the media with this, the insurance commissioner and where ever else need be if it comes down to an attorney then so be it!!!
She called the laws, Obama gunk, but more importantly isn't it her job to know these things. I, just a stupid house wife and mom, found the law why can't they. They are hoping that we are going to crawl under a rock so they can get out of paying anything...well this mamma isn't going away. I'm taking Amelia with me to every meeting that we have. The first one up is the Sheriff tomorrow, and if we get the chance to appeal in front of the sheriff's association she will be there front and center to look all those old retired sheriff's in the eye and have them tell her no!!! They are going to tell it to me they are going to tell them no there is nothing that we can do to give you a fighting chance at saving your life!! If they can sit there and tell an innocent child that they can not or rather WILL not help, then they are not men at all!!!!
you look at this face and then have the guts to tell her no there is nothing we can do to help you fight for your life....
We have a fight on our hands so, I am asking for some much needed prayers. Prayers for this to resolve in our favor so that Amelia can get her need transplant in Minnesota where they have a 100% survival rate for children under 10 years old. Prayer for Amelia's health and counts to continue to hold till we get the answers we need, pray for my sanity and for the strength, and wisdom to keep the fight going, not just for my child but all children who are not receiving the proper care because the insurance companies just wanna make their pocketbooks fatter!!
Thank you so very much.
Blessings,
Sunday, January 9, 2011
up date coming!!!
Got a doosy of an update coming I hope to get it up tomorrow...I'm too stressed and tired right now! But know that we need your prayers...we may be getting the local media and an attorney involved!! I'll do my best to update you all tomorrow!
Good Night all!
Good Night all!
Wednesday, December 29, 2010
Time of year...
Is it possible to love and hate the same time of year? I do! I love the holidays, of course who really doesn't love them? I hate the anniversary that is right around the corner. I think it came flooding back to me as I laid down to get Nathan to go to sleep. You see his room was once Marshall's room. It has changed a bit but not a lot. We had carpet in there back then and now we have hard wood floors, there is a different bed in there now. The paint is newer but still the same basic color and the wallpaper border is still the same for almost 12 years now(dinosaurs), which will change soon. Anyway as I was laying there in the bed with Nate all kinds of memories from 8 years ago came flooding back. Well it's not quite there yet on Jan 11th to be exact will be 8 years. I was remembering how the night started. Marshall was sick with a cold and yucky coughing and all. The night progressed and he started to throw up some blood, not a lot and he has extremely low platelets and I was not that worried...but as the night went on I just remember him saying weird things and then BOOM, it hit me like it hit him...I called the pediatrician and told her, this was like at midnight and she said what I think deep down I already knew...get him to Tulane Hospital ASAP. She asked if we wanted her to call an ambulance, but Ty figured he would get him there a lot faster than them, as first they would have to find us in the woods. When we got to the causeway we payed the toll and told the toll booth lady we were on our way to the ER she notified any police that were working on the bridge that night so if they saw us they would know what was going on...it's at a time like this that having police officer training is very helpful. When we reached the south shore we just went ran red lights and all we thought for sure that some police man somewhere was going to follow us to the ER, but no we were lucky. When we arrived at the Er they were ready and waiting for us. Thankfully one of our favorite police friends was working (we had met him just a few weeks earlier) and was so helpful. The doctors already suspected what was wrong but didn't tell us till it was confirmed and they worked quickly and it is that quickness and thoroughness that they took that I am thankful for today that my son is still alive!! I don't think I will ever for get that night. Ty was so worried not only about Marshall but me as well as I was pregnant with Nathan and was an extreme high risk pregnancy. We were told that who ever needed to get there need to get there now! We called my mom and dad and they came with Mimi quickly. You see it was also their anniversary!
Any way lets just say the next 48 hours or so were so critical, he had had brain surgery to repair a massive brain hemorrhage, lets just say the doctors were NOT optimistic at all. The gave us no prognosis what so ever and all they could tell us is we did what we could do and now time will tell. Time did tell and God preformed a miracle, because in just a few days he was out of the PICU and in a regular room walking talking and learning to eat again. To this day doctors are still amazed at him they told us with the kind of damage to the brain, that he should have been a vegetable basically. The left side of the brain was so swollen that you could hardly see the right side on the CT scan (they showed it to us). The center line of the brain is not suppose to move.
Anyway that is the main reason that I hate this time of year it always bring back those memories, and yes I am thankful that God granted that miracle and he is still here. As a mom though, and all you moms and probably dads too know....I HATE that he even had to go through anything like that!!! So when we call him Mighty Miraculous Marshall...you kinda know why!
Sorry to ramble but I just had to let it out....I'm so thankful it has been 8 years!!
On the home/health front they all seem to be getting over their nasty colds and we will be get Amelia's counts done on the 3rd of Jan.
Keep praying for them and thank you for your prayers they mean the world to us and if anyone knows the power of prayer it is I!!
Blessings,
Any way lets just say the next 48 hours or so were so critical, he had had brain surgery to repair a massive brain hemorrhage, lets just say the doctors were NOT optimistic at all. The gave us no prognosis what so ever and all they could tell us is we did what we could do and now time will tell. Time did tell and God preformed a miracle, because in just a few days he was out of the PICU and in a regular room walking talking and learning to eat again. To this day doctors are still amazed at him they told us with the kind of damage to the brain, that he should have been a vegetable basically. The left side of the brain was so swollen that you could hardly see the right side on the CT scan (they showed it to us). The center line of the brain is not suppose to move.
Anyway that is the main reason that I hate this time of year it always bring back those memories, and yes I am thankful that God granted that miracle and he is still here. As a mom though, and all you moms and probably dads too know....I HATE that he even had to go through anything like that!!! So when we call him Mighty Miraculous Marshall...you kinda know why!
Sorry to ramble but I just had to let it out....I'm so thankful it has been 8 years!!
On the home/health front they all seem to be getting over their nasty colds and we will be get Amelia's counts done on the 3rd of Jan.
Keep praying for them and thank you for your prayers they mean the world to us and if anyone knows the power of prayer it is I!!
Blessings,
Tuesday, December 21, 2010
Christmas Card 2010
Well I couldn't get them all in one picture together...they are siblings need I say more! So here is our Christmas card for this year.
I hope you all have a wonderfully blessed Merry Christmas and a Happy Healthy New Year!
On the health front, could you say a little prayer for us all as it is official, everyone in the house has the crud! Amelia was due to get counts but because she isn't feeling well I'm going to hold of for a week or two. Pray that this little cold doesn't affect her counts too bad!
Thanks again...
Blessings,
I hope you all have a wonderfully blessed Merry Christmas and a Happy Healthy New Year!
On the health front, could you say a little prayer for us all as it is official, everyone in the house has the crud! Amelia was due to get counts but because she isn't feeling well I'm going to hold of for a week or two. Pray that this little cold doesn't affect her counts too bad!
Thanks again...
Blessings,
Saturday, December 11, 2010
boring update...
Gosh I can't believe it has been almost a month since I last updated....
We have been busy around here. The kids are all in to something. Marshall was in a play at school "Babes in Toyland" He loved it! He has had a Christmas concert with chorus...Amelia has choir too at her school and she will be doing her Christmas stuff on the 15th. Nate he is into the Cub Scouts and enjoying it very much and we have been running to meetings and other things dealing with them.
I have met myself many times with all the comings and goings......their social calenders are just too much for me to keep up with.
On the health front (knock on some wood) they are all doing rather well. Amelia's counts are of course not the best but they are holding. I notice her a little tired and grouchy and I know that, that is her blood counts showing their signs. She doesn't realize it and of course wouldn't admit to anything any way, she has not and will not slow down ANY!!
Ty on the other hand I had to take to the doctor. He had to startings of bronchitis. He got a shot and some antibiotics. The hard part is that he is working nights, which he is not use to and that takes a lot of him. I'm hoping it gets under control before he infects any of the rest of us.
Well that's about it around here...I'm happy to say we, for now, are happy being a normal boring family!!
We have been busy around here. The kids are all in to something. Marshall was in a play at school "Babes in Toyland" He loved it! He has had a Christmas concert with chorus...Amelia has choir too at her school and she will be doing her Christmas stuff on the 15th. Nate he is into the Cub Scouts and enjoying it very much and we have been running to meetings and other things dealing with them.
I have met myself many times with all the comings and goings......their social calenders are just too much for me to keep up with.
On the health front (knock on some wood) they are all doing rather well. Amelia's counts are of course not the best but they are holding. I notice her a little tired and grouchy and I know that, that is her blood counts showing their signs. She doesn't realize it and of course wouldn't admit to anything any way, she has not and will not slow down ANY!!
Ty on the other hand I had to take to the doctor. He had to startings of bronchitis. He got a shot and some antibiotics. The hard part is that he is working nights, which he is not use to and that takes a lot of him. I'm hoping it gets under control before he infects any of the rest of us.
Well that's about it around here...I'm happy to say we, for now, are happy being a normal boring family!!
Wednesday, November 17, 2010
Counts...
We got Amelia's counts back...They are stable and will get us a ticket for another month.
Counts are
Wbc 3.4 (White Blood Cells)
Hgb 8.2 (hemoglobin)
Plt 24 (platelets)
ANC 850 (Absolute Nutraphil Count, Immune system) they like to have this abouve 1000 and Not below 500.
I have asked her doctor about a drug that might keep her counts up. The problem is they are not sure what they can do to the out come of a bone marrow transplant. Marshall was on a harsh one for years, but we had no choice with him as we could not find a match for him. Below is what the Dr sent me back about my question when I asked him how low would we let her counts get and can we try Danazole an androgen known to help with the Hgb.
"This is a good question. I dont know the answer on the danazol; it might be ok these days but Im hesitant to give. The good news is that you still have time as Amelia's counts have stayed up there longer than I expected. Ill keep my fingers crossed that she can wait. Id first use the G CSF (Neupogen) if I had do for her ANC if <500 but you are right that only the danazol has a chance for helping the platelets (although there is a new drug these days we might try). If she needs it, Ill see if I can get it for her. Nonetheless, Im hoping that the new policy starts July 2011 and I bet she can make that date. John"
So this is where we are today still needing you to pray for her, she has the sniffles right now and a cough...
I am thankful that her counts have remained stable, I just really pray that they can stay that way till all of this insurance stuff can be deciphered!
I'm hoping to get up some recipes later today....They were YUMMY!
Blessings,
Counts are
Wbc 3.4 (White Blood Cells)
Hgb 8.2 (hemoglobin)
Plt 24 (platelets)
ANC 850 (Absolute Nutraphil Count, Immune system) they like to have this abouve 1000 and Not below 500.
I have asked her doctor about a drug that might keep her counts up. The problem is they are not sure what they can do to the out come of a bone marrow transplant. Marshall was on a harsh one for years, but we had no choice with him as we could not find a match for him. Below is what the Dr sent me back about my question when I asked him how low would we let her counts get and can we try Danazole an androgen known to help with the Hgb.
"This is a good question. I dont know the answer on the danazol; it might be ok these days but Im hesitant to give. The good news is that you still have time as Amelia's counts have stayed up there longer than I expected. Ill keep my fingers crossed that she can wait. Id first use the G CSF (Neupogen) if I had do for her ANC if <500 but you are right that only the danazol has a chance for helping the platelets (although there is a new drug these days we might try). If she needs it, Ill see if I can get it for her. Nonetheless, Im hoping that the new policy starts July 2011 and I bet she can make that date. John"
So this is where we are today still needing you to pray for her, she has the sniffles right now and a cough...
I am thankful that her counts have remained stable, I just really pray that they can stay that way till all of this insurance stuff can be deciphered!
I'm hoping to get up some recipes later today....They were YUMMY!
Blessings,
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