The title to this blog may seem strange, but it is just my feelings coming out. Jerry is becoming overwhelmingly stressed in regards to the amount of money that we are needing for his treatment. He stated to me tonight that it's pretty crazy that he is more afraid of what this is going to do to us financially than what he is really thinking about what the tumor can do if we don't do anything about it.
We spent about 3 1/2 hours at the Burzynski clinic and the appointment was going really well. We met with the Dr's and they discussed with Jerry and I a treatment plan that seems acceptable to us. Gene-Targeted Therapy. We felt as thought the Dr's there were compassionate and caring, in fact, the entire staff was really "likeable". We read stories of success, and had a really confident feeling.....then we met with the financial advisor. We needed $1250 for today's consultation, $3500 for lab work, $10,000 when we come back to have his treatment started, stay there for 6-21 days (so Jerry will be out of work during this time, we will have no income) and then when he is sent home, he will pay $4500 a month for Dr. Burzynski's drug called sodium phenylbutyrate, and their monthly case management fees. He will also be prescribed several other drugs to take (we will not know these until the labwork comes back) which we will have to pay for, but we may be able to seek help from the drug companies for these drugs. Jerry will also have to have a local Dr. that is willing to write him his prescriptions once he is home, so we will have Dr. office bills as well. He then will have to get an MRI every two to three months as well, that will at least cost $3500 each time.
It may seem as thought I am complaining, in a way, I guess I am...but my intention is to simply state the financial facts. I do want to make it clear though, that we believe in what Dr. Burzynski is doing, and we believe that he and his staff deserve to be paid for what they are doing. We are in no way bashing Dr. Burzynski's clinic, but when it comes to our personall finances, we are SCARED!! We have been tremendously helped over the last few months with many acts of kindness financially and we couldn't be more thankful for all of that, but we are still so far away from what we need. We believe that Dr. Burzynski's treatment could very well cure Jerry with little to no side affects. This option seems so much better to us than what the "Traditional" Dr's have suggested. What really makes us angry is that Dr. Burzynski has a clinical trial right now that would probably cost us half the amount of money because the drug itself would be free, but the FDA will not allow someone to make their own decision in regards to their own medical treatment...Jerry would have had to have done the traditional treatment, and that treatment would have had to have failed in order to qualify for the clinical trial. Jerry made a good statement to me today, he said "the FDA tells us what we can't do in regards to treatment, but if I were to decide to do nothing, and die, they wouldn't care" It really makes us angry that we live in a country that is suppose to be founded on our freedom, but it seems that anymore, freedom doesn't exist! Money is what our country is now founded on, nothing more.
OK, my moment of rage is over, for now anyway. I need to stay focused on what I CAN do, not what I CAN'T! I told Jerry that we need to just face this thing head on, do what we can, make the appropriate adjustments in our life financially, do more fundraisers...whatever we need to do.. We need to stay positive and pro-active in his treatment, and more importantly, his life!
Jerry and I come home tomorrow afternoon, we plan to pick up our beautiful son and enjoy him. Sunday we will be picking up my girls and we will be living our life. We will be making plans for another trip to Texas within the next couple of weeks. We have a lot of planning to do regarding our children, and our business. Please continue to pray for direction. I want this to affect the children in our home as little as possible. I do not want their childhood to be overlooked while we are dealing with all of this. Next weekend, we are having Ashley's "half" birthday party. Her birthday was over the summer and though it was not overlooked, it was not really celebrated. Jerry and I were emotionally and physically drained during this time, and we were not thinking clearly. I promised Ashley we would celebrate it, so her "half" birthday seemed appropriate! Jerry and I both appreciate every act of kindness that has been sent our way. Everything helps, every financial contribution, every word of encouragement, and every whispered prayer. Thank You!