Holy humidity! I've added low humidity to my wish list for Saturday:)
Today was one of those days when you accomplish a ton of loose ends! The kids and I hung out all morning, then after lunch I headed out to a hair appointment. I'm so glad to not be looking like a swamp creature anymore! Then I hit 5 stores to grab some party items...so exciting!
Tonight I wrote a letter and sent scans to Dr. Laquaglia at Sloan. We want him to review Brady's recent scans and offer his impressions. I'm not sure how long he will be willing to do this, but until I hear otherwise, off they go! I also wrote a letter to my insurance company thanking them for our wonderful Case Manager. We have officially graduated from the Case Management program (which is good news!) so we will no longer need Priscilla's services. You know how you always say, "I'm going to write a letter" when either good/bad things happen? Well, tonight I decided to thank her for her wonderful service by doing just that! If you are reading Priscilla, thanks a million:) I signed my letter, Megan Williams, mom to Brady, cancer warrior and survivor! That is the first time I referred to him as a survivor, it has a nice ring to it:)
My sister and family arrived safely at my mom's from Minnesota. We are really looking forward to a week of fun with all of them. A big HAPPY BIRTHDAY TO MY SISTER MELISSA!
Showing posts with label insurance. Show all posts
Showing posts with label insurance. Show all posts
Monday, August 10, 2009
Wednesday, March 25, 2009
Answering Your Questions
Today has been another day of insurance headaches. Here is the bottom line at least how I understand it today: The doctors we are seeing at Sloan DO participate in our insurance, however we have to seek prior authorization for procedures done on an out-patient basis because we are technically traveling "out of network" for treatment. Once Brady is in the hospital, all care will be covered without having to do this process. So, for all appointments and tests next week I have had to call separately to our oncologist at Strong and request that they will out a form documenting medically necessity for whatever the procedure and then send it to the insurance. The insurance company then approves it and sends the approval on to Sloan. My suggestion? Once a child gets a cancer diagnosis, someone should authorize all treatment, scans, and tests that bring that child closer to a cure. There would be no reason to want frivolous testing done on your child, so it seems this system would be cost effective for everyone involved. Why should we all waste so much time calling, faxing, and filling out paperwork when it is ridiculously obvious that my child is sick and needs this treatment to live. Sorry, I needed to get that out to a willing audience:)
I also found out that Brady will need CT scans done under anesthesia while we are there next week. Apparently they want areas done that weren't done at Strong on Mar6th. So, we are squeezing three appointments and CT scans into our 1 1/2 days of time available. It is going to be difficult to have Brady with us, probably grouchy and tired from anesthesia and be able to focus during these appointments. We both want to be at all appointments, so we will have to make it work!
Now to answer the questions posted yesterday:
1. Any news on getting approved to see our "doctor of choice?"
I think I answered this one above. Things are falling into place, but this is still an area for prayer.
2. How are the other triplets handling Brady being sick?
Eli and Cara are handling things so well. The toughest part for them has been the times when Matt, Brady, and I have been away. Our parents help out a lot which is wonderful, but also it is confusing to them to have so many adults in charge! Cara certainly pays attention when Brady is getting his tubies flushed or dressing changed. She doesn't like when he cries and will come next to me and pretend to cry herself. Eli is quite oblivious to everything going on, he is a happy-go-lucky type kid. Other than that they treat each other much the same as always. Brady is actually starting to bully Eli a little. He loves to wrestle, Eli doesn't, so Brady crawls around after Eli and tries to tackle him. Eli justs runs the other way!
3. How long will the surgery be?
We won't know this until after the surgery! I think Dr. L will give us an estimate next week, but I have heard that his answer will be "it takes as long as it needs to." From other parents I have spoken with, Dr. L is meticulous during surgery and peels away cells one by one to make sure that he gets all he can. His goal is always a complete resection (removal) of the tumor. I have heard some surgeries that have lasted only 3 hours, some as long as 12.
4. Is Brady's hair falling out now that it is buzzed?
Actually we think Brady's hair is starting to grow back in. He never lost his eyelashes which made mommy so happy! It seems as though he has some new fuzz coming in on that cute head of his. I'm not sure how long it takes to come back fully after chemo.
5. Will he need more chemo after surgery?
The goal of surgery is to achieve NED (no evidence of disease) status. We will have to repeat the MIBG scan after surgery to see if any NB lights up. If not, then we achieved NED, if so, then we decide what to do next. We will have to rely on the advice of the doctors at Sloan and our own research to decide what to do next. We are always prayerfully considering the best path to take. NB is an unpredictable and scary disease. Relapse is VERY common even after achieving NED. We are willing to be more aggressive with treatment now in order to hopefully lessen the chance of relapse. That might include more chemo.
Thank you to all who submitted questions. If you ever have more, please feel free to ask. We hope to raise awareness about NB through Brady's story and want everyone to learn as much as possible about this disease.
I also found out that Brady will need CT scans done under anesthesia while we are there next week. Apparently they want areas done that weren't done at Strong on Mar6th. So, we are squeezing three appointments and CT scans into our 1 1/2 days of time available. It is going to be difficult to have Brady with us, probably grouchy and tired from anesthesia and be able to focus during these appointments. We both want to be at all appointments, so we will have to make it work!
Now to answer the questions posted yesterday:
1. Any news on getting approved to see our "doctor of choice?"
I think I answered this one above. Things are falling into place, but this is still an area for prayer.
2. How are the other triplets handling Brady being sick?
Eli and Cara are handling things so well. The toughest part for them has been the times when Matt, Brady, and I have been away. Our parents help out a lot which is wonderful, but also it is confusing to them to have so many adults in charge! Cara certainly pays attention when Brady is getting his tubies flushed or dressing changed. She doesn't like when he cries and will come next to me and pretend to cry herself. Eli is quite oblivious to everything going on, he is a happy-go-lucky type kid. Other than that they treat each other much the same as always. Brady is actually starting to bully Eli a little. He loves to wrestle, Eli doesn't, so Brady crawls around after Eli and tries to tackle him. Eli justs runs the other way!
3. How long will the surgery be?
We won't know this until after the surgery! I think Dr. L will give us an estimate next week, but I have heard that his answer will be "it takes as long as it needs to." From other parents I have spoken with, Dr. L is meticulous during surgery and peels away cells one by one to make sure that he gets all he can. His goal is always a complete resection (removal) of the tumor. I have heard some surgeries that have lasted only 3 hours, some as long as 12.
4. Is Brady's hair falling out now that it is buzzed?
Actually we think Brady's hair is starting to grow back in. He never lost his eyelashes which made mommy so happy! It seems as though he has some new fuzz coming in on that cute head of his. I'm not sure how long it takes to come back fully after chemo.
5. Will he need more chemo after surgery?
The goal of surgery is to achieve NED (no evidence of disease) status. We will have to repeat the MIBG scan after surgery to see if any NB lights up. If not, then we achieved NED, if so, then we decide what to do next. We will have to rely on the advice of the doctors at Sloan and our own research to decide what to do next. We are always prayerfully considering the best path to take. NB is an unpredictable and scary disease. Relapse is VERY common even after achieving NED. We are willing to be more aggressive with treatment now in order to hopefully lessen the chance of relapse. That might include more chemo.
Thank you to all who submitted questions. If you ever have more, please feel free to ask. We hope to raise awareness about NB through Brady's story and want everyone to learn as much as possible about this disease.
Thursday, March 12, 2009
Taking a Deep Breath
Another day, another series of frustrating phone calls. I'm talking to several nice, well-meaning people every day. However, progress is slow and I can't believe that in the year 2009 when a child has cancer, that it can be this difficult to get an appointment and to get your insurance to cover it. Here is the news from today:
1. Sloan received the fax (2 times actually) of all Brady's records.
2. The CT scans and MRIs are in the mail on their way to Sloan.
3. The pathology dept is preparing slides to be sent to Sloan.
4. Our insurance company has only approved a "2nd opinion consult" at Sloan. This is enough to get us an appointment, but that is it. This is an obstacle, but I have our case manager (who is wonderful)working on it.
Sloan will not pass Brady's info on to the medical team until they have the pathology slides in their hands. Hopefully, they will be in the mail tomorrow. The office staff at Sloan loves hearing from me everyday I'm sure, I think that is why they finally caved and told me that March 24th might be a possbility for an appt if everything is in order.
Brady is down to needing bloodwork only on Thursdays. He continues to be brave and adorable throughout the whole process. I'm calling Strong tomorrow to inquire about the catecholamine results that we still don't have.
Please be praying:
1. For Cara and her appointment with the eye specialist tomorrow. We are praying that whatever is wrong will be easily fixable. Pray that she will tolerate the exam well and I will be able to clearly articulate what is going on.
2. For me, as I'm really struggling with anxiety and worry right now. The details of how to keep our family going while existing in two different places is overwhelming. There are so many small details to think about as far as being in NYC, living in a hospital, traveling back and forth, arranging help at home...My heart is heavy as I know what is coming for Brady. It was excruciating to watch him endure the last surgery/recovery, my "mommy heart" is breaking at the thought of it.
3. For our parents who continue to bear a lot of the "burden" of helping us with the kids. Keep in mind that we still are attempting to raise 4 kids under 2, that alone is an exhausting job. We are in the midst of the "terrible 2s" and trust me, the grandparents put up with a lot! We praise God for them, but need you to pray for them as well.
God is truly revealing himself to us through the tremendous blessing we have everyday in our friends and family. It is impossible to deny the awesome power of God when we look at all He has done for us!
1. Sloan received the fax (2 times actually) of all Brady's records.
2. The CT scans and MRIs are in the mail on their way to Sloan.
3. The pathology dept is preparing slides to be sent to Sloan.
4. Our insurance company has only approved a "2nd opinion consult" at Sloan. This is enough to get us an appointment, but that is it. This is an obstacle, but I have our case manager (who is wonderful)working on it.
Sloan will not pass Brady's info on to the medical team until they have the pathology slides in their hands. Hopefully, they will be in the mail tomorrow. The office staff at Sloan loves hearing from me everyday I'm sure, I think that is why they finally caved and told me that March 24th might be a possbility for an appt if everything is in order.
Brady is down to needing bloodwork only on Thursdays. He continues to be brave and adorable throughout the whole process. I'm calling Strong tomorrow to inquire about the catecholamine results that we still don't have.
Please be praying:
1. For Cara and her appointment with the eye specialist tomorrow. We are praying that whatever is wrong will be easily fixable. Pray that she will tolerate the exam well and I will be able to clearly articulate what is going on.
2. For me, as I'm really struggling with anxiety and worry right now. The details of how to keep our family going while existing in two different places is overwhelming. There are so many small details to think about as far as being in NYC, living in a hospital, traveling back and forth, arranging help at home...My heart is heavy as I know what is coming for Brady. It was excruciating to watch him endure the last surgery/recovery, my "mommy heart" is breaking at the thought of it.
3. For our parents who continue to bear a lot of the "burden" of helping us with the kids. Keep in mind that we still are attempting to raise 4 kids under 2, that alone is an exhausting job. We are in the midst of the "terrible 2s" and trust me, the grandparents put up with a lot! We praise God for them, but need you to pray for them as well.
God is truly revealing himself to us through the tremendous blessing we have everyday in our friends and family. It is impossible to deny the awesome power of God when we look at all He has done for us!
Sunday, January 25, 2009
Seeing God's Grace
We had a memorial service for my Grandma today. My heart was certainly somewhere else, but as much as possible I tried to let my mind be present as I listened to Pastor speak about God's grace. It is IMPOSSIBLE to look back on the events of the last month and not see God's grace sprinkled throughout this journey. With each day's events, I can't help but find incredible encouragement in the assuredness of God's grace from scripture, but how amazing to see it working in our lives. We are desperately trying to cling to this as we continually deal with feelings of sadness, anger, fear, and doubt. I wanted to share with all of you some of these miracles as a witness to God and His grace:
1. After our Dec23rd appt with the developmental specialist, Brady was given a diagnosis of cerebral palsy. The doctor set us up with an appointment for an MRI of JUST Brady's head for Jan21st. As the weeks went on and Matt and I studied more about CP, it just didn't seem like Brady. We both had an instinct that this was not what was wrong with Brady. I felt compelled to call the doctor and ask that they also do an MRI of the spine. The secretary was VERY reluctant to even ask the doctor, she told me several times it was not going to show anything for a kid with CP. I persisted. I called back two times and finally she agreed to run it by the doctor. They finally said they would do it if the insurance would okay it.
2.Up until Jan1st, we had Univera insurance. The first time the doctor submitted just the brain MRI to the insurance, they denied it. After Jan1st, we had to switch to Preferred Care. At this point, they submitted the request for both the brain and spine. We were okayed without any problem for both tests.
3. It is unimaginably horrifying to think of what would have happened if #1 and #2 above hadn't happened. We have been told that the tumor on Brady's spine could have caused paralysis at anytime. Had we not insisted that the spine be captured by an MRI, we would have never known about the cancer. Brady would most like have become paralyzed and more than likely the cancer would have spread making successul treatment highly unlikely. If we hadn't switched insurances, we would not have been able to get the spine MRI done, at least not for quite sometime.
It is impossible for us not to see our God at work in Brady's life. It is easy for us to be mad, we are mad. It is easy for us to be scared out of our minds, at times we are paralyzed by fear. But, we are committed to seeing God's grace in Brady's life and to share that with others. May he be a living testimony of God's goodness that is available for all who believe.
1. After our Dec23rd appt with the developmental specialist, Brady was given a diagnosis of cerebral palsy. The doctor set us up with an appointment for an MRI of JUST Brady's head for Jan21st. As the weeks went on and Matt and I studied more about CP, it just didn't seem like Brady. We both had an instinct that this was not what was wrong with Brady. I felt compelled to call the doctor and ask that they also do an MRI of the spine. The secretary was VERY reluctant to even ask the doctor, she told me several times it was not going to show anything for a kid with CP. I persisted. I called back two times and finally she agreed to run it by the doctor. They finally said they would do it if the insurance would okay it.
2.Up until Jan1st, we had Univera insurance. The first time the doctor submitted just the brain MRI to the insurance, they denied it. After Jan1st, we had to switch to Preferred Care. At this point, they submitted the request for both the brain and spine. We were okayed without any problem for both tests.
3. It is unimaginably horrifying to think of what would have happened if #1 and #2 above hadn't happened. We have been told that the tumor on Brady's spine could have caused paralysis at anytime. Had we not insisted that the spine be captured by an MRI, we would have never known about the cancer. Brady would most like have become paralyzed and more than likely the cancer would have spread making successul treatment highly unlikely. If we hadn't switched insurances, we would not have been able to get the spine MRI done, at least not for quite sometime.
It is impossible for us not to see our God at work in Brady's life. It is easy for us to be mad, we are mad. It is easy for us to be scared out of our minds, at times we are paralyzed by fear. But, we are committed to seeing God's grace in Brady's life and to share that with others. May he be a living testimony of God's goodness that is available for all who believe.
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