THE CALM BEFORE THE STORM...

HAPPY EASTER EVERYONE!!!



IT'S TECHNICALLY A LITTLE LATE, BUT I HAVE NEVER BEEN ONE TO BE ON TIME ANYWAYS. HERE IS MY PRECIOUS NIECE EMMA, WHO IS CURRENTLY OBSESSED WITH EGGS...



NOT EATING THEM MIND YOU... JUST EGGS IN GENERAL. SHE JUST REALLY LOVES HER SOME EGGS!!!

AND HOW ABOUT' THEM VOLS!!! WOW. THAT GAME TODAY WAS UNBELIEVABLE!!! AND I DON'T KNOW ABOUT ANYONE ELSE, BUT MY ENTIRE FAMILY REALLY THOUGHT THAT THE OFFICIATING CREW WAS TRYING TO GIVE BUTLER THE WIN WITHOUT QUESTION. IT WAS TERRIBLE!! AND THEN WHEN WE WERE IN OVERTIME, WE ALL COULD HAVE SWORN WE HAD 2 MORE POINTS THAN THE SCORE REFLECTED. WE STILL COULDN'T FIGURE OUT WHY THERE WASN'T A 4 POINT LEAD IN INSTEAD OF THE 2 POINT LEAD THEY WERE SHOWING IN THE LAST 30 SECONDS OR SO. WE DECIDED THAT WE MUST HAVE MISSED SOMETHING, BUT THEY KEPT SWITCHING BACK TO THE DAVIDSON/ GEORGETOWN GAME (HOW ABOUT DAVIDSON, HUH??!) AND WE NEVER GOT ANY CLARIFICATION. BUT NOW IT'S LOUISVILLE'S TURN TO FACE THE BIG ORANGE, AND ON BEHALF OF ALL OF US IN VOLUNTEER COUNTRY FOR BOTH THE UT MEN AND WOMEN'S BASKETBALL TEAMS, I SAY...



WE HAD SO MUCH TODAY THOUGH!! I WATCHED THE GAME WITH MY PARENTS, BROTHER, NIECE & NEPHEW AND WE WERE ALL CHEERING LIKE CRAZY AND PACING LIKE MANIACS TOWARDS THE END OF THE GAME!! NOT EMMA, OF COURSE, AS HER NEW FAVORITE SAYING IS "CALM DOWN!!!" WHICH SHE SHRIEKS EVERY CHANCE SHE GETS, EVEN WHEN WE WERE ACTUALLY CALM. IT WAS HILARIOUS!! WE JUST HAD A WONDERFUL DAY, AND AN AWESOME FAMILY WEEKEND REALLY. DADDY LEAVES FOR HOUSTON TOMORROW, AND HE AND MOM ARE NOT SURE WHEN THEY WILL BE GETTING BACK. HE GAVE ME A BIG HUG THAT LASTED FOREVER BEFORE I LEFT THEIR HOUSE TONIGHT WHICH REALLY MADE IT ALL SINK IN. IT WAS SO MUCH HARDER THAN I THOUGHT TO SAY GOODBYE. WE TOOK A PRE-TREATMENT PHOTO OF THE PAPA BEAR TODAY. HE IS SUCH A CHEESEBALL!! I GIVE YOU EXHIBIT A...



HAHA :-)

WE ARE HOPING HE WILL LOOK THE EXACT SAME WHEN WE ALL SEE HIM NEXT AND WILL LOOK THE SAME THROUGHOUT HIS TREATMENT, ALTHOUGH THIS IS IN ALL LIKELIHOOD WISHFUL THINKING. WE JUST WANT HIM WELL AGAIN EVEN THOUGH THIS WILL BE A LIFELONG ORDEAL. WE JUST WANT HIM STABLE, WITH NO LEUKEMIA IN HIS BODY AT ALL. AND WE WANT IT TO STAY THAT WAY.

I COULD TELL WHEN ME AND MY BROTHER (AND HIS MINI-HE'S) WERE HUGGING HIM GOODBYE THAT HE WAS NERVOUS AND A LITTLE SCARED. THAT MIGHT BE THE FIRST TIME I HAVE EVER SEEN MY DADDY NERVOUS AND SCARED IN ALL MY 32 YEARS. IT WAS A BIT JARRING TO BE HONEST. BUT WE AGREED THAT HE WOULD GO OUT TO HOUSTON AND JUST KICK CANCER'S ASS, AND WE SHOOK ON IT SO IT'S OFFICIALLY A DEAL. AND I AM REALLY PLACING MY HOPE IN GOD THAT HE HELPS DADDY KEEP HIS END OF THE BARGAIN.

SO HE BEGINS TESTING FOR TREATMENT ON TUESDAY. I KNOW THIS IS THE BEST FACILITY IN THE COUNTRY BUT I CAN'T HELP BUT WORRY A LITTLE THAT THEY WILL DEEM HIM A MATCH FOR TASIGNA BECAUSE THEY HAVE A CLINICAL TRIAL GOING ON, EVEN IF THAT IS NOT HIS BEST OPTION. AS I HAVE SAID EARLIER, THE TASIGNA IS A NEWER DRUG WITH GREAT RESULTS, BUT THERE IS SUCH A STRONG WARNING ABOUT HEART PROBLEMS AND SUDDEN DEATH WHILE ON THE DRUG THAT I HOPE THEY ALL TAKE INTO CONSIDERATION BEFORE JUST PUTTING HIM ON IT. IT'S USUALLY PRESCIBED TO THOSE WHO ARE RESISTANT TO GLEEVEC, AND DADDY HASN'T EVEN BEEN ON GLEEVEC. IF YOU TAKE GLEEVEC AND IT IS NOT EFFECTIVE THAN YOU TAKE TASIGNA. IF YOU TAKE TASIGNA AND IT IS NOT EFFECTIVE THAN YOU CANNOT GO BACK AND TRY GLEEVEC. YOU HAVE TO GO FORWARD TO A MUCH MORE AGGRESSIVE FORM OF TREATMENT. THE MORE I READ ABOUT TASIGNA AND IT'S SIDE EFFECTS ON THE HEART THE MORE NERVOUS I GET. I TRUST THAT THE DOCTORS AT M.D. ANDERSON WILL EXHAUST ALL OPTIONS TO MAKE SURE HE IS A PROPER CANDIDATE FOR TASIGNA, BUT IT MAKES ME NERVOUS. PLUS DADDY'S ONCOLOGIST, WHO WE LOVE, IS MOVING TO FLORIDA. THAT SUCKS BECAUSE WE REALLY LIKE HIM AND ARE COMFORTABLE WITH HIM AND NOW DAD WILL HAVE TO SWITCH LOCAL ONCOLOGISTS.

REGARDLESS, THIS IS GOING TO BE A TOUGH WEEK FOR BOTH MY PARENTS SO PLEASE KEEP THEM IN YOUR THOUGHTS. I WILL KEEP YOU ALL POSTED WITH ANY UPDATES I GET.

THANKS AGAIN FOR ALL YOUR SUPPORT!!

LOVE,
ALYSON

ACCEPTED...

SO DAD HAS OFFICIALLY BEEN ACCEPTED INTO THE CLINICAL TRIAL PROGRAM AT M.D. ANDERSON. HOWEVER, WE HAVEN'T THE SLIGHTEST ON WHEN HE WILL ACTUALLY BE GOING THERE. THIS WHOLE THING IS THE MOST FRUSTRATING PROCESS E.V.E.R. - NOT ANYWHERE NEAR AS BAD AS FINDING OUT HE HAS LEUKEMIA, OBVIOUSLY, BUT FRUSTRATING TO THE ABSOLUTE CORE.

I WOULD REALLY LOVE TO KNOW WHO FEELS IT APPROPRIATE TO LET THIS MAN BASICALLY SIT ON HIS HANDS AND DO NOTHING TO COMBAT THIS ILLNESS UNTIL THEY HAVE ROOM TO ACCOMMODATE HIM AT THIS HOSPITAL. HE IS NOT ALLOWED TO TAKE ANY DRUGS IN THE MEANTIME BECAUSE IT WOULD ELIMINATE HIS ELIGIBILITY IN THE CLINICAL TRIAL PROGRAM TO BEGIN WITH. SO YEAH. HE IS DEALING WITH HIS LEUKEMIA BY DOING NOTHING RIGHT NOW AND IT IS HONESTLY MAKING ME CRAZY.

I HAD A HORRIBLE WEEKEND DEALING WITH THIS. ALL I CAN THINK ABOUT IS HOW MUCH WORSE THE LEUKEMIA COULD BE GETTING EACH DAY WITHOUT TREATMENT. FINDING IT EARLY IS ONE THING. WAITING TO TREAT IT IS QUITE ANOTHER.

I CALLED HOME THE OTHER NIGHT AT 7pm AND DAD WAS ASLEEP. I COULDN'T BELIEVE THIS. IT IS SO COMPLETELY NOT LIKE MY DAD AT ALL. WHEN I SPOKE TO HIM ON SUNDAY HE SAID THIS WAS PRETTY MUCH THE DRILL THESE DAYS. HE COMES HOME FROM WORK, GOES TO BED AND WAKES UP EVERY TWO HOURS TOO EXHAUSTED TO DO ANYTHING ELSE BUT TRY TO GO BACK TO SLEEP.

THIS SCARES ME. HE'S NOW 3 WEEKS TO THE DAY PAST HIS INITIAL PHYSICAL THAT LED TO HIS DIAGNOSIS. WHO KNOWS HOW MANY WEEKS OR MONTHS IT HAS BEEN SINCE HE DEVELOPED THE LEUKEMIA IN THE FIRST PLACE. I JUST DO NOT UNDERSTAND THE RATIONALE BEHIND THE WAITING FOR TREATMENT THING. AND I CAN'T ESCAPE THE THOUGHT THAT THIS DELAY IS STRENGTHENING THIS DISEASE THAT IS RUNNING RAMPANT IN HIS BODY WITH NOTHING TO COMBAT IT.

DOES THIS EVEN MAKE SENSE OR AM I ACTUALLY LOSING MY MIND OVER NOTHING??

ANYWAY, HOPEFULLY I WILL BE BACK WITH BETTER NEWS SOON. I JUST WANT THE MAN ON A PLANE TO HOUSTON TO BEGIN THE PROCESS OF KICKING LEUKEMIA'S ASS. I REALLY DON'T THINK THIS IS TOO MUCH TO ASK.

AGAIN, THANKS FOR LETTING ME VENT,

ALYSON

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

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