Friday, February 24, 2012

Appointment with Dr. Burzynski!!

Jerry and I were sitting around the table with our kids on Monday evening.  Ashley, our 7 year old, started telling us about the story she had just learned in Sunday School about Jesus feeding over 5,000 people with only 2 fish and 5 loaves of bread.  Jerry proceeded to tell Ashley what that story means.  He explained to Ashley that it is a story about "faith".  Jesus didn't write down a plan and tell the disciples exactly how he was going to feed 5000 people with 2 fish and 5 loaves, rather he just told them to 'feed the people'.  I was talking to my mom about this story, and she told me (she is Ashley's Sunday school teacher) part of their lesson was about how God uses even children to tell his story, not just grown ups.  I believe that God put that story in Ashley's mind that evening for a reason.  It helped both Jerry and I to remember that we may not have an exact financial plan laid out for us to be able to afford this treatment, but we feel strongly that it is the direction that God wants us to go.  We realize that even though in our human nature, we feel like we need a 'plan', or we need the 'answers' before we do anything, God instructs us to just go, and we need to believe and have faith that he will provide for us.

With that being said, we made an appointment for March 20th to go back to Texas for Jerry's treatment.  We were blessed the first time we went with donated air-fare, lodging, and car rental.  NONE of this is in place for us this time, but we are confident that God will provide this time, just as he did the first time.

Please continue to pray for healing.  Also pray for Jerry and I to have the faith we need to continue to believe that God is in control and that he will provide for us physically and financially.

Special Prayer Request

I am asking prayer today for a young girl.  This young lady was diagnosed with a brain tumor in December 2011.  She had surgery in December where they removed 90% of her tumor.  She was left in a wheel chair with paralysis on her left side. She then proceeded to have chemotherapy and radiation treatments that her Doctors recommended.   This young girl recently went back to the Doctor to have an MRI to check on the tumor after her chemotherapy and radiation therapy.  To her and her families demise, the tumor was back, and it was larger than it was prior to her surgery.

Please remember her and her family in your prayer.

*********************************************************************************

This story really saddens my heart.  This family was given hope by the Doctors with 'Traditional Treatment' and this treatment has failed this young girl.  The statistics that I have come across regarding traditional treatment is not very good at all!  The poison that they put into your body to 'heal' you, or to 'cure' your cancer is so often fatal to the 'good' cells in your body and more often than not, the prognosis is not good.

Jerry and I have done a tremendous amount of research regarding this topic.  When the only treatment options that were given to Jerry were exactly the same as this young girl; surgery, chemotherapy and radiation.  We had a 'gut' feeling that it wasn't the direction that we were suppose to go down.  Dr. Burzynski is one of the Doctors that have come across a different, non-traditional treatment.  A treatment with little to no side affects, with small doses of chemotherapy included.  The small doses of chemotherapy are sometimes only submitted to compromise with the FDA or to do some 'traditional' therapy so that if the first round of Dr. Burzynski's FDA approved therapies don't work, than Dr. Burzynski will petition the FDA to allow the patient to be part of the 'clinical trial' in which will only be allowed if 'traditional' therapies fail.

What Jerry and I think is crazy is that the FDA, the very organization that is allowing all the toxins in our food, the very food that is killing Americans everyday, is the same organization that controls the very drugs that we need because of the food that is killing our bodies.  Also, the FDA's primary source of funding is through the very pharmaceutical companies that they control.  Seems like a conflict of interest to us!  How many times do we see new drug's advertised on TV, only to watch an advertisement later with a 'law suit' out because of a drug that has had fatal side affects.  I think we need to be cautious of the drugs that we put into our bodies and we need to do our own research.  I would suggest that everyone do their own research, don't take my word for it, I may not have all the facts correct, but to the best of my knowledge, and in my own personal opinion......the FDA is not to be trusted!!

Monday, February 20, 2012

Happiness

Jerry and I had a wonderful weekend with our Family.  On Saturday we celebrated Ashley's 7 1/2 birthday!  Her birthday was in August, and it just got overlooked because of all the stress we were under at the time.  I told Ashley that we would have a party for her during the school year, and she was happy with that.  What a joy it was to see her so happy.  Jerry and I, with the assistance of my 11 year old daughter, watched 6 little happy 6 & 7 year olds pin the tail on the donkey, break open a pinata ,play musical chairs, play hot potato, jump on our trampoline, and dig into a delicious ice cream cake.   On Sunday we celebrated our "February" birthdays with my side of the family.  Our family is so large, that we have birthdays just about every month of the year!  To make it more simple, we get together once a month and celebrate.  We don't purchase expensive gifts, we just get together and enjoy each other.  Seeing the joy on my daughters face Saturday, and having my family over on Sunday, made me really think about what is so easily missed when you are under the kind of stress we are under right now. Putting aside everything we are going through and just enjoying our life was the perfect medicine for me! 

Jerry is becoming more certain everyday of the path that he wants to take regarding treatment.  When we first came back from the Burzynski clinic he had serious doubts.  He didn't know if the expense was worth it.  As time has went on and more research has been done, he is even more confident now in proceeding with Dr. Burzynski's treatment plan.  Jerry does not qualify for any of Dr. Burzynski's clinical trials because of the fact that Jerry has not had any "traditional" treatment thus far.  To qualify, you have to had tried traditional treatment, and it had to fail in order to qualify.  Because of this, Dr. Burzynski is putting Jerry on a very low dose of chemotherapy during his treatment of gene targeted therapy which is FDA approved.  If this treatment doesn't work, he will then submit to the FDA to see if he will qualify since he did the traditional chemotherapy.

Jerry is getting closer to making his decision on a date to start treatment.  He is just very concerned with his business and his employees being out of work during his treatment in Texas which could last up to 3 weeks.

Thank you for following my posts.  It is such a good outlet for me to express my thoughts and feelings.  I'm not a professional in any way, just a mom and a wife that wants to enjoy a long life with my husband and children. 

Monday, February 13, 2012

Clarity

OK, we need some serious prayer right now.  Prayer for clarity. 

Jerry is now so "over the top stressed" about the money involved, that he can't sleep, he can't work, he really isn't functioning well at all. 

He is not certain what to do.  There are cheaper treatments, or there is the option to do nothing.  He has seriously considered doing nothing.

As his wife, I try to listen, but I'm getting concerned.  We are trying to shuffle through medical bills, filling out paperwork to see if the hospitals will work with us financially, dealing with different charities and we are just getting really extremely overwhelmed.

If you can take a moment and just pray for clarity and direction we would appreciate it.

Friday, February 10, 2012

I Love my husband and I don't want him to give up!

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!

Wednesday, February 8, 2012

We leave tomorrow......

I thought I would update, since I haven't been on here in awhile.  Jerry and I are leaving in the morning for Texas.  We have an appointment with Dr. Burzynski on Friday at 10:30.  We are very anxious for our appointment.  We plan to ask a lot of questions!!    Hopefully the clarity we are looking for will be found while we are there.  Jerry is still unsure whether or not he is willing to fork out the money they are asking for up front for the treatment.  Hopefully their answers will give him the comfort that he needs.  When we get back and the decision is made on what road we will be traveling down regarding treatment, I will post and let everyone know. 

Jerry and I couldn't be more grateful for the generosity of so many people in our lives.  Up until today, our flight was paid for (by a very generous friend) , our room was paid for (by a charity that I applied for called CincoCharities), and then of course, with the tremendous amount of financial support, our appointment is taken care of financially.  The only thing that we were going to have to pay for in regards to this trip was our rental car and food.  So, very minimal.  I received a call this morning from a good friend of Jerry's and he expressed to me that he wanted to take care of our rental car and food!  I was silent at first, this outpouring of love is sometimes hard to swallow...I told him that he didn't have to do it.  His response was "let me do this for Jerry and you".  I humbly and gratefully took his offer.  We are in a position of need, a place that neither Jerry or I have ever been in before, and it is quite a humbling experience.  THANK YOU to everyone who has contributed to Jerry's life including help with this trip.  We are trusting in our Heavenly Father and praying that he will take favor on Jerry's life.

Blessings to all, pray for a safe and successful trip...that our minds will be clear....