I got so caught up in ranting and raving, and venting about the health care system, that I completely forgot to mention the most important thing that happened today!
Pat was baptized Roman Catholic as a small child, and although I have been a believer for several years, I have never been baptized. So neither of us had been baptized into the Christian faith, and both of us have wanted to do so for a while. So TODAY was the big day! We had the hospital's chaplain come in today, and baptize Pat, myself, and we also dedicated both the boys to the Lord this afternoon. What a day to remember! With everything that is going on, I just can't forget how loving Our God truly is, and how amazing His love, and grace is. It is my faith, and my faith alone that has gotten me to where I am today, and He is bringing US through these struggles and trials. Although sometimes it is VERY hard to realize, I know He has a plan! He sees the bigger picture when we cannot. We are only human, but He is God!
Love
Jen :)
Tuesday, February 1, 2011
Not the news we wanted to hear...
Well Dr. Santala came in tonight and talked with us briefly about the future, and what it may hold. Basically he told us that the phase I trials we were putting all our faith in, may not be the way to go.
Let me break down what I have learned about Phase I and Phase II trials. Phase I trials are designed to test doses of an unknown drug. For example...Doctors are testing Drug X. In a Phase I trial, they will take, say 10 participants. They will start those 10 participants on a very low dose of the drug for a determined amount of time. Then they will add another 10 participants, the first 10 will stay on that lower dose of Drug X, and the newest group will be given a slightly higher dose. They will add another 10 participants, the first two groups will stay on their doses, and the newest group will be given a slightly higher dose than the last....so on and so forth, until they find a suitable dose. When they find what they consider a suitable dose, they will move on to Phase II of the study. A new group of participants will begin the trials. They will be given a dose of Drug X equivalent to the highest suitable dose from Phase I. In Phase II, the doctors will see how well this new Drug X, performs in treating the disease/illness they are studying.
With that being said, Dr. Santala told us that he does not recommend that we follow through with a Phase I study. He said that it is basically just testing the toxicity of the drug, and not really trying to treat any disease/illness. He said that a Phase II study would be better. This news was not the greatest, because if I recall right, many of the studies we were given to choose from, were Phase I studies. Dr. Santala briefly looked over the paperwork we gave him late last night, but hadn't really researched any of it a whole lot. He said he would look into them further, but didn't see any that really 'popped' out to him as being a good fit for Pat.
The other problem Dr Santala brought to our attention is, Pat has multiple diseases. He doesn't have JUST Chronic Myelogenous Leukemia (CML), and he doesn't have JUST Acute Lymphocytic Leukemia (ALL), and he doesn't have JUST luekemia in his Central Nervous System (CNS), he has all THREE. Some of the study's focus on only ALL, and some focus on only CML, there was at least one that seemed to focus on both CML, and ALL, BUT, as far as I could tell, there weren't ANY that focused on all three. He said he thinks the most damaging disease at this point, is probably the ALL, but all three need to be treated, and not just one of the three.
So, again, we wait. We wait to see what Dr. Santala recommends. I HATE waiting...it's the worst part of all of this!
I am just so upset with the health care facilities in Oklahoma. They were all ready to send us to a Phase I study, without even informing us what it entailed. We thought it was going to be a good option, but in reality, we had no idea what we would have been getting into. Like I said in my last post, they sent us packing with a handful of paperwork to decipher ourselves, and offered no support, or help to get through any of this. I just find it so inconsiderate, and in-compassionate. These are doctors that deal with terminal illness on a daily basis, I know, but you would think they would be in your corner every step of the way. Instead they sent us out the door with a few clinical trials in hand, and didn't look back. It's as if they were saying, 'well the ball is in their court now, to decide what to do next, and it's all off MY shoulders now'. SOOOO frustrating!
Anyway, that's pretty much the extent of this update. I appreciate everyone's efforts to get this blog around the world. If you haven't done so yet, please share this with your friends and family. It has been viewed from around the globe, and I want to see it to continue to be spread. The more people that view this blog, the more people that will be praying for a miracle! So, please, help me get our story heard by the world! Thanks everyone, and goodnight!
Love
Jen :)
Let me break down what I have learned about Phase I and Phase II trials. Phase I trials are designed to test doses of an unknown drug. For example...Doctors are testing Drug X. In a Phase I trial, they will take, say 10 participants. They will start those 10 participants on a very low dose of the drug for a determined amount of time. Then they will add another 10 participants, the first 10 will stay on that lower dose of Drug X, and the newest group will be given a slightly higher dose. They will add another 10 participants, the first two groups will stay on their doses, and the newest group will be given a slightly higher dose than the last....so on and so forth, until they find a suitable dose. When they find what they consider a suitable dose, they will move on to Phase II of the study. A new group of participants will begin the trials. They will be given a dose of Drug X equivalent to the highest suitable dose from Phase I. In Phase II, the doctors will see how well this new Drug X, performs in treating the disease/illness they are studying.
With that being said, Dr. Santala told us that he does not recommend that we follow through with a Phase I study. He said that it is basically just testing the toxicity of the drug, and not really trying to treat any disease/illness. He said that a Phase II study would be better. This news was not the greatest, because if I recall right, many of the studies we were given to choose from, were Phase I studies. Dr. Santala briefly looked over the paperwork we gave him late last night, but hadn't really researched any of it a whole lot. He said he would look into them further, but didn't see any that really 'popped' out to him as being a good fit for Pat.
The other problem Dr Santala brought to our attention is, Pat has multiple diseases. He doesn't have JUST Chronic Myelogenous Leukemia (CML), and he doesn't have JUST Acute Lymphocytic Leukemia (ALL), and he doesn't have JUST luekemia in his Central Nervous System (CNS), he has all THREE. Some of the study's focus on only ALL, and some focus on only CML, there was at least one that seemed to focus on both CML, and ALL, BUT, as far as I could tell, there weren't ANY that focused on all three. He said he thinks the most damaging disease at this point, is probably the ALL, but all three need to be treated, and not just one of the three.
So, again, we wait. We wait to see what Dr. Santala recommends. I HATE waiting...it's the worst part of all of this!
I am just so upset with the health care facilities in Oklahoma. They were all ready to send us to a Phase I study, without even informing us what it entailed. We thought it was going to be a good option, but in reality, we had no idea what we would have been getting into. Like I said in my last post, they sent us packing with a handful of paperwork to decipher ourselves, and offered no support, or help to get through any of this. I just find it so inconsiderate, and in-compassionate. These are doctors that deal with terminal illness on a daily basis, I know, but you would think they would be in your corner every step of the way. Instead they sent us out the door with a few clinical trials in hand, and didn't look back. It's as if they were saying, 'well the ball is in their court now, to decide what to do next, and it's all off MY shoulders now'. SOOOO frustrating!
Anyway, that's pretty much the extent of this update. I appreciate everyone's efforts to get this blog around the world. If you haven't done so yet, please share this with your friends and family. It has been viewed from around the globe, and I want to see it to continue to be spread. The more people that view this blog, the more people that will be praying for a miracle! So, please, help me get our story heard by the world! Thanks everyone, and goodnight!
Love
Jen :)
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