HERE WE GO...

OKAY, CLEARLY I AM NOT A PHYSICIAN AND APPARENTLY AM UNABLE TO UNDERSTAND 99.9% OF WHAT PHYSICIANS SAY, BUT HERE WE GO REGARDLESS...

BIG POPPA (THAT'S HIS RINGTONE ON MY CELL!) GOT HIS BONE MARROW RESULTS BACK YESTERDAY. I STILL AM QUITE CONFUSED AS TO WHAT THESE RESULTS MEAN, ALTHOUGH FOR THE TIME BEING THEY SEEM TO BE POSITIVE. I THINK SO, ANYWAYS.

OKAY, SO WE HAVE AN OFFICIAL DIAGNOSIS OF CHRONIC MYLOGENEOUS LEUKEMIA. WITHIN THIS DIAGNOSIS IS THE OVERWHELMING PRESENCE OF A GENETICALLY ABNORMAL "MUTANT" CELL CALLED THE PHILADELPHIA CHROMOSOME. BASICALLY IF YOU HAVE THIS CHROMOSOME IT STARTS AS ONE SINGLE ABNORMAL CELL AND THEN SLOWLY CONTAMINATES THE GOOD CELLS WHICH EVENTUALLY RESULTS IN LEUKEMIA. AND ALTHOUGH IT IS GENETIC IT DOES NOT MEAN THAT HE GOT IT FROM ANY MEMBER OF HIS FAMILY OR COULD GIVE IT TO ME OR MY BROTHER. IT'S SIMPLY JUST A MUTANT CELL THAT HE HAS WHICH HAS RESULTED IN LEUKEMIA. THIS PHILADELPHIA CHROMOSOME WAS PRESENT IN 10 OF THE 11 CELLS BIOPSIED FROM HIS BONE MARROW.

ALSO, I LEARNED YESTERDAY THAT THE WHITE BLOOD CELL COUNT OF THE HEALTHY PERSON IS 15. MY DAD'S BLOOD WORK HAS BEEN PROCESSED THREE TIMES IN THE PAST WEEK AND IT HAS RANGED FROM 188,000 TO 81,000. THIS SEEMS SO RANDOM TO ME, AND IT'S HARD TO EXPLAIN ESPECIALLY CONSIDERING I HAVE NO IDEA WHAT I AM TALKING ABOUT. HE FEELS FINE THOUGH, EXCEPT MORE TIRED THAN USUAL.

SO, INSTEAD OF GOING THE GLEEVEC ROUTE, WHICH WE HAD ORIGINALLY PLANNED, HE HAS BEEN SELECTED AS A CANDIDATE FOR A CLINICAL TRIAL OF THE DRUG TASIGNA
. APPARENTLY THE DIFFERENCE IN THESE TWO MEDICATIONS ISN'T KNOWN TO BE THAT BIG OF A DIFFERENCE. THE SIDE EFFECTS OF GLEEVEC ARE PRETTY HARSH. AND THE SIDE EFFECTS OF TASIGNA AREN'T FABULOUS EITHER, BUT THEY CAUSE LESS FATIGUE. LESS FATIGUE IS EXTREMELY IMPORTANT TO MY DADDY. HE IS THE MOST ACTIVE MAN I KNOW. I AM AFRAID THAT TAKING AWAY OR INHIBITING HIS ABILITY TO KEEP LIVING HIS LIFE AS ACTIVELY AS POSSIBLE WOULD BE MORE DETRIMENTAL TO HIS HEALTH THAN PRETTY MUCH ANYTHING ELSE.

THIS DRUG IS ALSO FARING SIGNIFICANTLY BETTER THAN THE GLEEVEC IS. AND IT IS ADMINISTERED TO PATIENTS AT THE #1 LEUKEMIA HOSPITAL IN THE COUNTRY, THE UNIVERSITY OF TEXAS M. D. ANDERSON CANCER CENTER IN HOUSTON, TEXAS. SO, MY PARENTS ARE EXPECTING A CALL ANY MINUTE NOW FROM THIS HOSPITAL AND ARE ALREADY PACKED AND READY TO GO SINCE THEY WILL BE BOOKED ON A FLIGHT WITHIN HOURS OF THIS CALL.

HE WILL BE ADMITTED FOR A MINIMUM OF 5 DAYS AND THEN WILL RETURN AT LEAST ONE TIME A MONTH FOR THE NEXT SIX MONTHS. IF ALL CONTINUES TO GO WELL HE WILL RETURN A MINIMUM OF ONCE EVERY 6 MONTHS AFTER THAT. I AM ASSUMING THAT THIS WILL BE THE CASE FOR THE REST OF HIS LIFE. AND HE WILL HAVE TO STAY ON THIS DRUG FOR THE REST OF HIS LIFE, AS WELL. ALTHOUGH IF THE TASIGNA DOES NOT WORK THEN GLEEVEC IS NO LONGER AN OPTION AND A SIGNIFICANTLY MORE AGGRESSIVE FORM OF TREATMENT WILL BE NECESSARY.

SO I AM ENCOURAGING YOU ALL TO GO TO THE NATIONAL BONE MARROW DONOR SITE AND CHECK IT OUT. I AM NOT ASKING YOU TO REGISTER YOURSELF AS A DONOR FOR MY DAD OR ANYONE ELSE FOR THAT MATTER. I JUST THINK IT'S WORTH A LOOK.

I REALIZE THAT THIS POST IS OF THE UTMOST CONFUSION, AND THAT IS BECAUSE I FEEL LIKE I AM SPEAKING A DIFFERENT LANGUAGE WITH MY PATHETIC ATTEMPTS AT ALL THIS MEDICAL LINGO. MOM AND DAD SEEM VERY POSITIVE ABOUT THIS AND THAT MAKES ME BELIEVE THAT I SHOULD BE AS WELL. BUT I CAN'T HELP TO WONDER WHY THIS CHANGE OF COURSE IN TREATMENT IS NECESSARY AND WHAT MAKES DAD A CANDIDATE FOR THIS CLINICAL TRIAL AS OPPOSED TO ALL THE OTHER PATIENTS HIS ONCOLOGIST TREATS.

SO, ALL IN ALL, NOT THE BEST CASE SCENARIO WE HAD HOPED FOR (MIS-DIAGNOSIS) OR THE WORST CASE SCENARIO (IMMEDIATE BONE MARROW TRANSPLANT).

HERE'S HOPING FOR THE BEST!!!! :-)

MUCH LOVE & HUGS TO YOU OUT THERE...

BAXTER

PS- ALSO WISHING PATRICK SWAYZE (WHOSE RECENT NEWS WAS SHOCKING TO SAY THE LEAST) AND THE MILLIONS OF OTHERS BATTLING CANCER THE SAME LUCK WE ARE HOPING FOR. MANY BLESSINGS TO YOU ALL...

THE "L" WORD...

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

March Of Dimes

Be The Match