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...