The kids are finishing their first Tri-mester at school. It will be interesting to see if having the Parental Portal to check their status and current grade has been helpful. We parents are still learning how to use this tool. The kids are liking the ads help them decide what to mark on their "Wish lists" in anticipation of Christmas gifts. The boys have definitely gone to the higher priced toys.
Tom's schedule continues to be busy. Last weekend along with his regular work schedule, he taught classes at the Wayland EMS Disaster Blitz. The kids were able to participate in the drills for Mass Causality. Their wounds looked totally real and they had a blast! I was able to be outside and to enjoy the Indian Summer last weekend. I loved every minute of the sun and warmer temp.
This week we received a call from Dr. Worden's office. We will be visiting the U of M on Wednesday, December 9. It will be an interesting step to have yet another specialist working on Tom's disease. I believe that we are taking a step in the right direction. Again, I am amazed at Tom's primary doctor who pushed the issue, helping us get what we need for Tom's medical care.
Katie watched a show this week and was "singing" to me about what she heard. She recited this verse by heart, and I was touched by her words. To come out of the mouth of a babe was awesome! "Keep on asking and you will keep on getting; keep on looking and you will keep finding; knock and the door will be opened." Luke 11:9
Wednesday, November 11, 2009
Wednesday, November 4, 2009
Oncology
The time change is effecting some of our family members. I always have a hard time with this change. However, I am glad the kids can walk to school in the light. They do seem a little sluggish but I am not sure it is all due to the time change and not a little to do with the sugar withdraws!
Tom had his blood work done on Friday. His primary doctor called him on Tuesday to give him the new count which has shot up another 120 counts and now is up to 663. During their conversation the doctor mentioned about Tom going to the U of M to see Dr. Worden. This brought another conversation between Dr. and Insurance company asking why Tom was denied going to the U of M. The Case Manager called me asking me to give a little more detail about about the doctor we see at the U of M. She explained that the insurance company thought it was agreed that we were going to the Cancer Center in Detroit. A few phone calls later and we have an approval to see the Oncologist at U of M. Dr. Worden will oversee Tom's treatment working with our current Oncologist at the Lemmon Holton Cancer Pavilion. It feels good to make some forward progress.
Thursday Tom will see his primary doctor and hopefully will have the UofM referral before he leaves that office. Then on November 19 he will be having a consult with Dr. Campbell here in West Michigan. On the 20th he will see an Endocrinologist for a consult here in GR. He is continuing his PT every Friday and that fills up his calendar for the month!
Thanks to all who have continued to keep our family in your prayers. I believe they have kept us in forward motion. The power of prayer along with a positive attitude is a remarkable thing!
James 5:7 -8"So give yourselves humbly to God. Resist the devil and he will flee from you. And when you draw close to God, God will draw close to you."
Tom had his blood work done on Friday. His primary doctor called him on Tuesday to give him the new count which has shot up another 120 counts and now is up to 663. During their conversation the doctor mentioned about Tom going to the U of M to see Dr. Worden. This brought another conversation between Dr. and Insurance company asking why Tom was denied going to the U of M. The Case Manager called me asking me to give a little more detail about about the doctor we see at the U of M. She explained that the insurance company thought it was agreed that we were going to the Cancer Center in Detroit. A few phone calls later and we have an approval to see the Oncologist at U of M. Dr. Worden will oversee Tom's treatment working with our current Oncologist at the Lemmon Holton Cancer Pavilion. It feels good to make some forward progress.
Thursday Tom will see his primary doctor and hopefully will have the UofM referral before he leaves that office. Then on November 19 he will be having a consult with Dr. Campbell here in West Michigan. On the 20th he will see an Endocrinologist for a consult here in GR. He is continuing his PT every Friday and that fills up his calendar for the month!
Thanks to all who have continued to keep our family in your prayers. I believe they have kept us in forward motion. The power of prayer along with a positive attitude is a remarkable thing!
James 5:7 -8"So give yourselves humbly to God. Resist the devil and he will flee from you. And when you draw close to God, God will draw close to you."
Sunday, October 25, 2009
Communication
We had Parent Teacher conferences last week and once again discussed with the teacher our children's strength and weaknesses. Communication is key and I have to say that I appreciate the Parental Portal that lets us know what our boys grades are and what classes need a little more attention. It has been a great tool this fall.
Tom is trying to visit the Lymphedema specialist for the physical therapy once again. He will be going every Friday and see how that fits into his schedule. I believe that Tom is appreciating his slower schedule this month. Tom was the first of the boys to come down with the flu/cold. He was able to rest about 4 days before going back to work. At one time he told me it felt like he'd been hit by a bus. I know that his immunity continues to be low and that it does not take as much to slow Tom down. I also know that this is frustrating for Tom as he is not one to be down for a long period of time.
I had a conversation with the nurse at the cancer center. We discussed the disconnect at their office. I believe that the conversation went well and I hope that we have cleared up any issues. We will need to make sure that going forward everything is clear with this office. However, time will tell if we are all on the same page. Tom will be getting poked next week to see where all his levels are at. I am hoping that they are stable and there is not another big jump in Calcitonin levels. Tom will need to make an appointment one week from his blood work date to see Dr. Campbell and get the results. Communication is the key in working with the different offices.
I am doing a study and presentation this fall on Hope. It comes from the book called The Anatomy of Hope. It is a great book that a friend gave me to read about 2 years ago. Many of the writings stuck with me throughout these years and I thought it was appropriate for my Holistic Healthy class. It brings to light again the mysterious affect that Hope (and in my opinion faith) has on a person's outlook when encountering a serious disease. It also brings back to mind readings of hope and faith from the Bible. I have read this before and I love what Jeremiah wrote in Lamentations 3:21-23
"Yet there is one ray of hope: his compassion never ends. It is only the Lord's mercies that have kept us from complete destruction. Great is his faithfulness; his loving kindness begins afresh each day."
I continue to communicate with my God daily. He is my Hope. Amen
Tom is trying to visit the Lymphedema specialist for the physical therapy once again. He will be going every Friday and see how that fits into his schedule. I believe that Tom is appreciating his slower schedule this month. Tom was the first of the boys to come down with the flu/cold. He was able to rest about 4 days before going back to work. At one time he told me it felt like he'd been hit by a bus. I know that his immunity continues to be low and that it does not take as much to slow Tom down. I also know that this is frustrating for Tom as he is not one to be down for a long period of time.
I had a conversation with the nurse at the cancer center. We discussed the disconnect at their office. I believe that the conversation went well and I hope that we have cleared up any issues. We will need to make sure that going forward everything is clear with this office. However, time will tell if we are all on the same page. Tom will be getting poked next week to see where all his levels are at. I am hoping that they are stable and there is not another big jump in Calcitonin levels. Tom will need to make an appointment one week from his blood work date to see Dr. Campbell and get the results. Communication is the key in working with the different offices.
I am doing a study and presentation this fall on Hope. It comes from the book called The Anatomy of Hope. It is a great book that a friend gave me to read about 2 years ago. Many of the writings stuck with me throughout these years and I thought it was appropriate for my Holistic Healthy class. It brings to light again the mysterious affect that Hope (and in my opinion faith) has on a person's outlook when encountering a serious disease. It also brings back to mind readings of hope and faith from the Bible. I have read this before and I love what Jeremiah wrote in Lamentations 3:21-23
"Yet there is one ray of hope: his compassion never ends. It is only the Lord's mercies that have kept us from complete destruction. Great is his faithfulness; his loving kindness begins afresh each day."
I continue to communicate with my God daily. He is my Hope. Amen
Sunday, October 11, 2009
The Next Step
It amazes me how fast time flies. Kyle and I were having the generational talk about time getting faster as we get older. I warned him that when he looks back at the High School years some day it will seem like a short span in his life. Cody's football team has not won a game this year, but he has made some great tackles and he is enjoying it! Katie loves the Michigan History study that her class is doing. At this point she is talking about wanting to be a teacher. I love her ambition!
For the month of September, Tom is at a slower pace. It has been nice to have him at home in the evenings. He is taking a much needed breather in his hectic life. He told me yesterday that he thinks the newest medication is working with his swelling, and I am grateful for this small relief. Though he still deals with daily aches and pains, he keeps smiling and telling me that he is just glad to be here. As we have just passed the 2 year anniversary of his surgery, I have counted this time as a precious gift.
I had a conversation with Tom's primary doctors office and was told that our insurance has denied Tom seeing the U of M Oncologist. Since the University is "Out of Network" they would like Tom to see another Oncologist at a Thyroid Clinic in Detroit. Tom has decided that we will stay with his current Oncologist on the West side of the state. Since this is the case, I have chosen to have a much needed conversation with someone in the Oncologist office as to our future relationship. I am just not sure who is the best person to talk to. However, it is time for Tom to get his blood count again and that opens the door the lack of communication with this office. This will not be easy and I hope that we can work together moving forward.
Please continue to pray for Tom and his struggles. Also that the conversation will go smoothly and stay positive with whomever I speak with at the Oncologist Office. Lastly that we do not get discouraged in the path that we have been set upon.
For the month of September, Tom is at a slower pace. It has been nice to have him at home in the evenings. He is taking a much needed breather in his hectic life. He told me yesterday that he thinks the newest medication is working with his swelling, and I am grateful for this small relief. Though he still deals with daily aches and pains, he keeps smiling and telling me that he is just glad to be here. As we have just passed the 2 year anniversary of his surgery, I have counted this time as a precious gift.
I had a conversation with Tom's primary doctors office and was told that our insurance has denied Tom seeing the U of M Oncologist. Since the University is "Out of Network" they would like Tom to see another Oncologist at a Thyroid Clinic in Detroit. Tom has decided that we will stay with his current Oncologist on the West side of the state. Since this is the case, I have chosen to have a much needed conversation with someone in the Oncologist office as to our future relationship. I am just not sure who is the best person to talk to. However, it is time for Tom to get his blood count again and that opens the door the lack of communication with this office. This will not be easy and I hope that we can work together moving forward.
Please continue to pray for Tom and his struggles. Also that the conversation will go smoothly and stay positive with whomever I speak with at the Oncologist Office. Lastly that we do not get discouraged in the path that we have been set upon.
Tuesday, September 22, 2009
PET Results
Today was Katie's picture day and we had fun last night picking out an outfit for her day. It was a great opportunity to go through her clothes and get rid of the things that are too small. Tom and I were able to see Kyle in the band last Friday during half-time. I never saw that child step so lightly before! Cody will have his first football game tomorrow and he is totally into it!!! I believe that they have him in offense, defense, and special teams so he will be on the field more than off.
I called Tom's primary doctor today asking about the PET Scan. Their office manager is on maternity leave so things are running a little differently there. Dr. Divic called me back and said the scan shows normal in the neck and chest. He is still perplexed about the Calcitonin numbers. He said that we should be back to monitoring the blood and waiting for another 4 to 6 months to see what happens. He inquired about seeing the Oncologist, either Dr. Campbell or going to the U of M. I explained that at this point we do not have any appointments as we are waiting for our insurance company to approve switching out of network doctor in Ann Arbor. It was funny that he had to ask me what I talked about to his Office Manager before she left. She is truly missed by more than just her staff.
We turn back to daily focusing on "life" again for a while. I believe that both Tom and I felt relief when we got the news. However, we are still all keeping that number in the back of our minds. Life is so fragile and we all need each other to hold each other up and accountable for our actions while we live. We are not given the understanding today to know why things happen and what purpose this bears unto our lives but I believe this verse from Ecclesiastes 7:14
"Enjoy prosperity whenever you can, and when hard times strike, realize that God gives one as well as the other - so that everyone will realize that nothing is certain in this life."
I called Tom's primary doctor today asking about the PET Scan. Their office manager is on maternity leave so things are running a little differently there. Dr. Divic called me back and said the scan shows normal in the neck and chest. He is still perplexed about the Calcitonin numbers. He said that we should be back to monitoring the blood and waiting for another 4 to 6 months to see what happens. He inquired about seeing the Oncologist, either Dr. Campbell or going to the U of M. I explained that at this point we do not have any appointments as we are waiting for our insurance company to approve switching out of network doctor in Ann Arbor. It was funny that he had to ask me what I talked about to his Office Manager before she left. She is truly missed by more than just her staff.
We turn back to daily focusing on "life" again for a while. I believe that both Tom and I felt relief when we got the news. However, we are still all keeping that number in the back of our minds. Life is so fragile and we all need each other to hold each other up and accountable for our actions while we live. We are not given the understanding today to know why things happen and what purpose this bears unto our lives but I believe this verse from Ecclesiastes 7:14
"Enjoy prosperity whenever you can, and when hard times strike, realize that God gives one as well as the other - so that everyone will realize that nothing is certain in this life."
Tuesday, September 8, 2009
What happened?
The first day of school is officially done. The kids all survived, and the boys found their classes with little incident. Ready or not, we are getting into a routine. However, miss Katie will be exhausted tonight as she awoke at 5:00 am and was too excited to fall back to sleep!
Tom has his PT 3 days a week starting Wednesday of this week. He will hopefully get into a better schedule because they have his appointment times all over the board this week. With Tom's schedule it is hard for him to make early morning and middle of the day times. It would be nice if this one thing would work smoothly.
Today I received a call from the Grievance Coordinator. He stated that Tom's PET Scan has been approved and that the Oncologist would be receiving the Authorization number soon to schedule it. He could not tell me what had been done to change this to an Approval. However, I did get a history lesson on who is making this decision. In the past it was our insurance company who approved them. It changed hands to an outside approval company in November of 2008. The criteria is different for each company. The PET scan criteria had not been met since the change of companies. There is no explanation as to why they approved it in December and it sounds like this is the last time that it will be without the Criteria being met. Tonight I had a few minutes to talk with Tom about the authorization and he said that he does have a PET scheduled for Wednesday, September 16 @ 9:00.
I have a light heart tonight as I thank God. I had so many verses pop into my head that I could not write them all down. I will share this one:
"Bless the Lord who is my immovable Rock. He gives me strength and skill in battle. He is always kind and loving to me; he is my fortress, my tower of strength and safety, my deliverer. He stands before me as a shield." Psalms 144:1-2
Tom has his PT 3 days a week starting Wednesday of this week. He will hopefully get into a better schedule because they have his appointment times all over the board this week. With Tom's schedule it is hard for him to make early morning and middle of the day times. It would be nice if this one thing would work smoothly.
Today I received a call from the Grievance Coordinator. He stated that Tom's PET Scan has been approved and that the Oncologist would be receiving the Authorization number soon to schedule it. He could not tell me what had been done to change this to an Approval. However, I did get a history lesson on who is making this decision. In the past it was our insurance company who approved them. It changed hands to an outside approval company in November of 2008. The criteria is different for each company. The PET scan criteria had not been met since the change of companies. There is no explanation as to why they approved it in December and it sounds like this is the last time that it will be without the Criteria being met. Tonight I had a few minutes to talk with Tom about the authorization and he said that he does have a PET scheduled for Wednesday, September 16 @ 9:00.
I have a light heart tonight as I thank God. I had so many verses pop into my head that I could not write them all down. I will share this one:
"Bless the Lord who is my immovable Rock. He gives me strength and skill in battle. He is always kind and loving to me; he is my fortress, my tower of strength and safety, my deliverer. He stands before me as a shield." Psalms 144:1-2
Sunday, September 6, 2009
Decision Time
We are at the last stretch of summer vacation. The youngest is the only one excited to be going back to school. Since the boys are starting new schools I wonder if they have a little apprehension about what their days ahead will look like. We enjoyed watching the WMU vs UofM yesterday with family at Swan Lake. Our family was all in WMU but it was good to see Michigan having a much better start to the football season. It was a beautiful day for just being outdoors and enjoying company.
Last Thursday we met with Tom's Oncologist. The morning started with receiving news from his PCP that Tom's calcitonin levels jumped to 536. If you recall in July his last count was 395 so in a month the increase was 141. This was not encouraging to hear. I decided to bring along the 300 plus page report that I had been going over to to discuss the Denial and Appeals with his doctor to see how we could get this Approved or if we need to concentrate on a different type of scan for now. At the beginning of our consultation Tom and I were shocked to hear the doctor proclaim that once again his numbers were jumping to indicate the cancer is definitely growing and that he recommended a PET scan as our next step. I replied that I am sure he was aware that Tom had been denied the PET scans twice before. We were shocked and disappointed that Tom's doctor did not appear to have any knowledge of the Denials & Grievance's. His response was that he would make a phone call to the insurance company and get this through. We waited out in the lobby to hear that the Oncologist did get through but nothing was resolved. We were also assured that they would get it resolved on Friday and they would call us. In short we felt that we were shuffled through his office. Friday came and went with no phone call.
That evening Tom and I had a long conversation. This is his life that we are dealing with and we are not satisfied with the current level of care that he is receiving. We decided to follow the advise of his Surgeon 2 years ago and move his care back to the University of Michigan Hospital. Tom discussed this with his Primary Physician on Friday who agreed that he needs to return to the U of M where they have a team of specialists who can deal with this rare cancer. His office has started the paperwork. We do not anticipate any prob elms with our insurance company switching our Oncologist.
While we feel that this is the right decision, it will not be an easy one. This will mean Tom will have to start making trips back & forth to Ann Arbor at a time when school is starting and we are in the midst of Band, Football, Cheer leading, and I have now returned to working full time. Maybe this will force Tom to slow down and not work so many hours. Thanks for continuing this journey with our family & your support. We can't do this alone.
Last Thursday we met with Tom's Oncologist. The morning started with receiving news from his PCP that Tom's calcitonin levels jumped to 536. If you recall in July his last count was 395 so in a month the increase was 141. This was not encouraging to hear. I decided to bring along the 300 plus page report that I had been going over to to discuss the Denial and Appeals with his doctor to see how we could get this Approved or if we need to concentrate on a different type of scan for now. At the beginning of our consultation Tom and I were shocked to hear the doctor proclaim that once again his numbers were jumping to indicate the cancer is definitely growing and that he recommended a PET scan as our next step. I replied that I am sure he was aware that Tom had been denied the PET scans twice before. We were shocked and disappointed that Tom's doctor did not appear to have any knowledge of the Denials & Grievance's. His response was that he would make a phone call to the insurance company and get this through. We waited out in the lobby to hear that the Oncologist did get through but nothing was resolved. We were also assured that they would get it resolved on Friday and they would call us. In short we felt that we were shuffled through his office. Friday came and went with no phone call.
That evening Tom and I had a long conversation. This is his life that we are dealing with and we are not satisfied with the current level of care that he is receiving. We decided to follow the advise of his Surgeon 2 years ago and move his care back to the University of Michigan Hospital. Tom discussed this with his Primary Physician on Friday who agreed that he needs to return to the U of M where they have a team of specialists who can deal with this rare cancer. His office has started the paperwork. We do not anticipate any prob elms with our insurance company switching our Oncologist.
While we feel that this is the right decision, it will not be an easy one. This will mean Tom will have to start making trips back & forth to Ann Arbor at a time when school is starting and we are in the midst of Band, Football, Cheer leading, and I have now returned to working full time. Maybe this will force Tom to slow down and not work so many hours. Thanks for continuing this journey with our family & your support. We can't do this alone.
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