Our insurance denied Freddie's medicine because it is not FDA approved for thymic cancer. It has been approved for other cancers, but since it isn't approved for his, the insurance looks at the bottom line and will not approve it. We are currently in the appeal process with our insurance company and also going through an application process with the drug company to see if they can assist us in getting the drug.
Freddie visited his two oncologists yesterday in Dallas. The first one he saw was new. She is a thymic specialist and would like for Freddie to visit the country's leading thymic specialist in Indiana. When Freddie met with his other oncologist yesterday afternoon, he agreed that this was a good idea and knows the doctor also. He also put in a call to the doctor and we will be visiting Indiana in December.
I know this is short and sweet, but this is all we know for now. I have no idea what we will find out in Indiana. I'm beginning to feel like doctor after doctor doesn't know what to do so we are being passed around to specialist after specialist. It is such a situation of uncertainty and disbelief. "I can't believe this is happening," "How could he have such a rare cancer," "What is going to happen and what is life going to be like for the next few months/years."
Please pray for us. And please look at life and be grateful for the blessings and health you have been given. We can't take anything in this world for granted and we don't know how long we are given. Hug and love on the ones you love, cease every moment, and live like there is no tomorrow. None of us are guaranteed to be here.
Blessings and love for now,
Wednesday, November 23, 2011
I realize I haven't been the best at blogging lately. We have had so much going on and, honestly, it's been difficult to sit down and process all of my thoughts and feelings, fears and worries about everything that has happened.
We spent two weeks in Houston at MD Anderson. Thankfully, we were able to find a small apartment very close by. We are so appreciative to the friends that help us arrange it.
A few days before Freddie's surgery, he had several tests and procedures including a C/T Scan and MRI. That evening, we both received calls from his surgeon. When Freddie was able to reach him, he shared the news that they had found a new tumor on his left shoulder blade. The cancer had spread and surgery was cancelled. He wanted to do a biopsy of the new tumor and Freddie pushed to have a new biopsy of his right lung. There had been many signs along our journey pointing us to the fact that he may have been misdiagnosed.
They were able to squeeze Freddie in for his biopsy several days later. It was a long, stressful day managing my husband and son, but we got through it and had to wait a week to find out the results.
In the meantime, we tried to enjoy ourselves as much as possible. Day trips to the beach in Galveston, visits from various family members and close friends, walks in the park, rides on the kiddie train, and a day at the zoo. It was nice to be together and cherish our time in Houston in some small way.
When we met with the doctor he informed us that Freddie had been misdiagnosed. He was diagnosed with Thymoma in May, but he actually has Thymic cancer. This is a much more aggressive disease and there is very little known about it. Thankfully, we caught it before an unnecessary surgery was completed.
On our last day in Houston, Freddie had a PET scan. We found out the following week that there are two more spots. One on his lombar and one on his pelvis.
His doctors at MD Anderson have allowed us to continue treatment here at home. Freddie's doctors are now in Dallas. His oncologist has decided to put him on an inhibitor that has been successful with other cancers. This is a drug that, if successful, could be taken for years. It does not have the side effects of chemo, which can only be taken for a limited time. Unfortunately, we are having a lot of trouble getting our insurance to approve it since the FDA hasn't approved it for this specific type of cancer. If that is the case, I don't know what the next step is. I guess more chemo and fights with the insurance company until they can see the value in my husband's life.
Words on this page can't express our fears, anxieties, stress, anger, and frustration. However, we are trying to remain optimistic and upbeat, if nothing else, for our son. We try to remain positive and keep things as normal as possible for him.
Someday, I hope we look back together and remember this stressful time and see the value in the way it helped us grow in our faith and love for each other. I believe he can be healed. We lay it in God's hands and hope that this works out the best way it can.
Please continue to pray for our family. For healing, peace, and wisdom in making the right decisions; for grace and strength as we face the unknown; and for blessings for all of those who have taken time, prayers, money, etc. to help support our family.
Right now, this is all we know. Most people want to know the prognosis of this cancer and it is not good. Doctors are very wary of giving you any definite answers. They don't want to limit their abilities and make you fearful. It is also best to stay positive because that is the number one way to become a survivor.
I know you may have questions. Please address them with caution. Being asked the same things over and over becomes difficult. It makes you doubt every decision you make and becomes frustrating when you don't have answers. I really have shared everything we know right now.
For now, we are in Fort Worth. We plan on celebrating this week with thanksgiving for all the blessings we have been given. Then, we have a precious almost-one-year-old to celebrate, followed by Christmas.
If cancer has taught me one thing, it is "carpe diem". Take each day for everything it is worth and live. Enjoy your time with the ones you love and do your best to eliminate negative energy and people. When given opportunities, take them and live life to its fullest. I thought this was a lesson I had already learned, but obviously, God is continuing to teach it to me.
Thank you for thinking of us and may God give you much to be thankful for this holiday.
Blessings to you from the Carams.