So I got my computer back today and all week I have been jotting down random things to blog about when I got it back. Then came Wednesday. The worst day of my life.
My Daddy has Leukemia.
That was actually harder to write than I thought. He has Chronic Myelogenous Leukemia (CML). They are almost positive he has the Chronic form, which is light years better than having the Acute or Accelerated form of this disease. The major problem is that it is Leukemia, which is cancer of the blood. All I can think about is how this cancer is running through his body all of the time.
The good news is that my Dad is not yet 58, in excellent health otherwise and the cancer was detected at his annual physical, which means it was not present enough to be found at last years physical. As a result they think they found it early and that while technically incurable, he will be able to live a long life providing the cancer remains in its chronic form.
He has a bone marrow biopsy on Monday and that will determine that he is indeed in the Chronic stage. Basically we are holding our breath that this is the case. Also, he will be undergoing other tests that will provide a comprehensive determination that his Leukemia has not spread or that he is not experiencing "crisis blasts" of cancer in his blood stream. Again we are holding our breath and praying like never before...
Providing that he is in the Chronic stage and that everything else is fine he will be able to take an oral form of chemotherapy called Gleevec. This drug has really good results, but is very new and long-term studies are not available. Dad's Oncologist is great and thinks this is the best treatment. If this drug works than Dad should reach remission after 9-12 months. He will ALWAYS have to take this drug. Everyday for the rest of his life. If he doesn't the Leukemia will in all certainty come back with a vengence. Lovely thing to note... insurance does not cover this medication for whatever stupid reason and it costs $3200 every single month for 30 pills. I wonder what happens to people who don't have that kind of money with the same diagnosis. I guess they die because they can't afford to live. That pisses me off.
Anyway, me and my brother Josh will likely be scheduled to have bone marrow biopsies as well within the next 3 months. If the Gleevec doesn't work than we will explore other options but basically the only chance for survival is a Stem Cell/Bone Marrow Transplant. We will be tested early on to see if we are matches to Dad in the event that this ends up being the course of action.
I was telling my best friend Angie yesterday about how I absolutely know without question that I am a match. I know this. I have instinctively known this since the night Dad told me he has Leukemia. I get everything from my Dad... traits, health-stuff, characteristics, etc etc. I know I am his match. And I better be too, because it is a very risky procedure for both the donor and the recipient and I would much prefer it to be me than my little brother who has two small children.
So, when I said this much to Angie she stopped me mid-sentence and said she had cold chills. When I asked why she reminded me of the story of my life. Literally...
For those who don't know, I was born in 1975 at 5 months 2 1/2 weeks. This is ridiculously early and there is basically NO reason for me to be alive. I weighed 2 lbs 3 ounces and died twice in my first 6 months of life. Here is a picture of me at 4 1/2 months of age...
I lived at Knoxville Baptist Hospital until I was almost 1. I was considered an absolute miracle. I've had no health problems since. And all of my life I have always said that there obviously was a reason I am alive, a reason GOD let me live, but I didn't know what that reason was.
Angie delivered her first child, Jackson prematurely in 2005 at 24 weeks. Jackson lived for 36 hours and has since become such an inspiration in all of our lives. It has been very difficult for me to reconcile his passing with my living. I was born a lot earlier than he was and in 1975, when they had NONE of the technology they have now. A WONDERFUL man, Doctor Berry saved my life by making the decision to send me to Knoxville where they had the technology to attempt to save me. There were none of the ways to transport patients like there are now, so I went by ambulance. My Daddy and my Godfather Jim followed behind the ambulance. I died for the first time during this transport. While there are reasons that I am alive and able to sit here and type this, such as God, the love of my family, organizations like Baptist Hospital and the March of Dimes, my determination to live, it has been extremely difficult for me to understand why Jackson died and I did not. This has further perpetuated and intensified the question in my mind that has always been there... why am I here???
Angie said yesterday... now you know why you are here. You are here to save your Daddy. I was completely taken aback by this and after I got off the phone I sobbed like a child.
I finally know why I am here.
Hopefully the Gleevec works but in the event it doesn't I am going to save my Daddy!! I will finally be able to repay him for all the love he has given me all of my life.
So, my friends, that is how I am handling this news. I am not falling apart. I am feeling positive. I am knowing that my Dad will live a long and healthy life.
I know this.
So when you see me or talk to me do not worry that I am not okay. I will not be the girl whose father has Leukemia. I will be the girl that feels lucky to have the Daddy I have. I am the girl who can save him :-)
And isn't he too cute by the way...
And while I am feeling very philosophical as of late, I will be back on Monday with my normal scathing report of Oscars fashion. I almost cannot wait!!
MUCH LOVE TO YOU ALL!!! CONTINUE PRAYING AND KNOW THAT WE WILL BE FINE!!
AND NEVER EVER FORGET...
xoxo,
Daddy's Girl Baxter
My Daddy has Leukemia.
That was actually harder to write than I thought. He has Chronic Myelogenous Leukemia (CML). They are almost positive he has the Chronic form, which is light years better than having the Acute or Accelerated form of this disease. The major problem is that it is Leukemia, which is cancer of the blood. All I can think about is how this cancer is running through his body all of the time.
The good news is that my Dad is not yet 58, in excellent health otherwise and the cancer was detected at his annual physical, which means it was not present enough to be found at last years physical. As a result they think they found it early and that while technically incurable, he will be able to live a long life providing the cancer remains in its chronic form.
He has a bone marrow biopsy on Monday and that will determine that he is indeed in the Chronic stage. Basically we are holding our breath that this is the case. Also, he will be undergoing other tests that will provide a comprehensive determination that his Leukemia has not spread or that he is not experiencing "crisis blasts" of cancer in his blood stream. Again we are holding our breath and praying like never before...
Providing that he is in the Chronic stage and that everything else is fine he will be able to take an oral form of chemotherapy called Gleevec. This drug has really good results, but is very new and long-term studies are not available. Dad's Oncologist is great and thinks this is the best treatment. If this drug works than Dad should reach remission after 9-12 months. He will ALWAYS have to take this drug. Everyday for the rest of his life. If he doesn't the Leukemia will in all certainty come back with a vengence. Lovely thing to note... insurance does not cover this medication for whatever stupid reason and it costs $3200 every single month for 30 pills. I wonder what happens to people who don't have that kind of money with the same diagnosis. I guess they die because they can't afford to live. That pisses me off.
Anyway, me and my brother Josh will likely be scheduled to have bone marrow biopsies as well within the next 3 months. If the Gleevec doesn't work than we will explore other options but basically the only chance for survival is a Stem Cell/Bone Marrow Transplant. We will be tested early on to see if we are matches to Dad in the event that this ends up being the course of action.
I was telling my best friend Angie yesterday about how I absolutely know without question that I am a match. I know this. I have instinctively known this since the night Dad told me he has Leukemia. I get everything from my Dad... traits, health-stuff, characteristics, etc etc. I know I am his match. And I better be too, because it is a very risky procedure for both the donor and the recipient and I would much prefer it to be me than my little brother who has two small children.
So, when I said this much to Angie she stopped me mid-sentence and said she had cold chills. When I asked why she reminded me of the story of my life. Literally...
For those who don't know, I was born in 1975 at 5 months 2 1/2 weeks. This is ridiculously early and there is basically NO reason for me to be alive. I weighed 2 lbs 3 ounces and died twice in my first 6 months of life. Here is a picture of me at 4 1/2 months of age...
I lived at Knoxville Baptist Hospital until I was almost 1. I was considered an absolute miracle. I've had no health problems since. And all of my life I have always said that there obviously was a reason I am alive, a reason GOD let me live, but I didn't know what that reason was.
Angie delivered her first child, Jackson prematurely in 2005 at 24 weeks. Jackson lived for 36 hours and has since become such an inspiration in all of our lives. It has been very difficult for me to reconcile his passing with my living. I was born a lot earlier than he was and in 1975, when they had NONE of the technology they have now. A WONDERFUL man, Doctor Berry saved my life by making the decision to send me to Knoxville where they had the technology to attempt to save me. There were none of the ways to transport patients like there are now, so I went by ambulance. My Daddy and my Godfather Jim followed behind the ambulance. I died for the first time during this transport. While there are reasons that I am alive and able to sit here and type this, such as God, the love of my family, organizations like Baptist Hospital and the March of Dimes, my determination to live, it has been extremely difficult for me to understand why Jackson died and I did not. This has further perpetuated and intensified the question in my mind that has always been there... why am I here???
Angie said yesterday... now you know why you are here. You are here to save your Daddy. I was completely taken aback by this and after I got off the phone I sobbed like a child.
I finally know why I am here.
Hopefully the Gleevec works but in the event it doesn't I am going to save my Daddy!! I will finally be able to repay him for all the love he has given me all of my life.
So, my friends, that is how I am handling this news. I am not falling apart. I am feeling positive. I am knowing that my Dad will live a long and healthy life.
I know this.
So when you see me or talk to me do not worry that I am not okay. I will not be the girl whose father has Leukemia. I will be the girl that feels lucky to have the Daddy I have. I am the girl who can save him :-)
And isn't he too cute by the way...
And while I am feeling very philosophical as of late, I will be back on Monday with my normal scathing report of Oscars fashion. I almost cannot wait!!
MUCH LOVE TO YOU ALL!!! CONTINUE PRAYING AND KNOW THAT WE WILL BE FINE!!
AND NEVER EVER FORGET...
xoxo,
Daddy's Girl Baxter
9 comments:
Hey Girl,
Just wanted to write and tell you how amazing you are. I told you once before that you are my hero and you continue to be a Hero!!! I want you to know that you and your family are in my thoughts and prayers. Stay positive and everything will be great!!! I am always here for you when you need me. Great friends are the best!!!
Love Ya,
Andi
Hey Alyson! Wow! I am so proud of you for looking at this situation with your dad as the glass is half full. You have inspired me to look at my situation with my daughter positively, and to know that everything is going to work out. I will pray for a good report on Monday with your dad's tests. Take care and God bless! Shannon
Oh my gosh, Alyson. How did I not know the story of your birth? You certainly are a miracle, but we knew that anyway! :) And I knew I always loved Dr. Berry for a reason. He is the best. I miss him! We have been praying for your dad & I know everything is going to be just fine. xoxo
Bless your little miracle heart, Alyson, and your Dad's. You are an inspiration and will teach us all that positive thinking will bring positive results. You and your family are and will stay in my positive thoughts and prayers.
- McDaniel
You, your dad and the rest of your family are in my thoughts and prayers. I'm sending lots of positive vibes your way. I am sure things are going to be just fine!
I'm wishing you and your dad good luck in the coming battle with cancer. Hang in there and stay positive!
Oh honey! Your story brought tears to my eyes-I never knew this about you-everything happens for a reason and you are a true miracle to us all!
Keep me posted.
Love you!
Baxter...you are definitely here for your Dad, but also for many, many more reasons. Life at UT would not have been the same without your smiling face! Sending very positive vibes and prayers your way!! Love you.
Aly, You are wonderful soul. One that I have never bet before. You put yourself before others always. You listen, you observe, you are always there. You are a miracle and a blessing to have has a friend and as a daughter. Regardless of the situation, your courage is tremendous.
I love you and your family dearly.
Kelsey
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