1/20/10 - 1/22/10 (Update from Eric) Day 4 of "slow time" and nothing is ever routine......

This particular block of chemo hasn't been that bad on Presley.  The nausea experienced after the first treatment may have been more to do with the mental aspect of another hospital stay.  In fact, she has been eating like a hyena after a kill, which is a good thing.  She has gained some weight, her color is now good, and her spirits are high as she can see the light at the end of this short tunnel.  Round 5 is over around 4:00pm Saturday and we expect to be discharged and head home to sleep in our own beds.

Day 1 and the morning of Day 2 were not very fun for Presley or myself.  Because they missed her nausea medicine prior to the LP (spinal tap), she was experiencing some stomach discomfort.  Prior to me getting to the hospital, they had given her some Atavan to help but it usually puts her out.  Atavan is also supposed to have a calming effect on kids when they are anxious about an upcoming procedure.  However with Presley, (1) it knocks her out, and (2) when she wakes up, she is an emotional wreck.  Daddy, enter drama stage right.  So with her getting sick Tuesday night, she got another dose of Atavan.

I compare Presley on Atavan to the "that girl at the party" that has been "overserved" (as my friend Sean so eloquently puts it).  She is the life of the party and then it just craters.  It ends in crying and "I'm sorry" and "why doesn't anybody love me" and my favorite "you don't understand".  It wasn't a fun time taking care of that girl in 1987 and it hasn't improved much in 2010 - especially when it's your 12 year old daughter with cancer. 

Tuesday morning, she was still coming out from the effects of the Atavan and did not want to take her meds or have anything to do with me.  PA finally arrived and saved me.  I kissed both of them goodbye and wished PA good luck.  It seems that once the Atavan wore off, Presley was active, sweet, hospitable, and social throughout most of the day.  Although my relationships are with the night shift nurses, Presley has very tight relationships with the day nurse crew.  It's like her little posse roaming the hall of TCH.  They all come down to her room and spend time with her and she loves each and every one of them.  So I get the Mr. Hyde and Peri gets Dr. Jeckyll.  (if i screwed that up, it's because I never read the book, but you get the notion.)

So on Wednesday morning, she went for an echo and EKG and spent most of the day hanging out with her posse and her little boyfriend Grant.  Grant is here going through MTX treatment and is doing quite well.  His hair has grown back and he looks so cute.  We all know it will be gone again in a couple of weeks, but it is like that first sign of spring after a long, barren winter.  Little signs of normalcy have so much meaning.

Wednesday night rolls around and the meds arrive late and Presley is asleep.  I prepare them (fruit rollups), and wait for her to wake up to potty.  She finally wakes up and then I tell her she has to take her meds before going back to sleep.  It was like I asked her to climb Everest.  The fireworks begin. 

My daughter is an enigma to my wife and I on several different levels.   I know it's called raising a pre-teen.  In most situations, she is bright, confident and has no trouble accomplishing tasks.  However, when she gets snakes in her head, she gets Boa Constrictors.  Since her cheer days in Fort Worth, when she faces adversity, she goes from success to total lockdown to success to total lockdown like a fainting goat (see YouTube). 

In cheer, she tumbled like a champ and then decided she couldn't do a round off back hand spring.  After 2 months of begging, pleading, bribing, yelling and private lessons, she did the ROBHS.  Then she would lock down again and we would start all over at Square One.   In volleyball, it was the overhand serve.  She got it in her head she couldn't do it and guess what.  Yep.  Two months of begging, pleading, bribing, yelling and private lessons.  The difference here is that leukemia butted in before she locked down.

So until May 19th, my daughter had never swallowed a pill.  If you scroll back to the first updates, you will see our struggles.  We finally found the trick (fruit roll ups), and she has been taking them for 7 months.  Granted, she gags from time to time and she procrastinates, but this week, the Boa Constrictor was wrapped around her head.  I blame Atavan, fatigue and my general disposition for most of the struggle.  But........  Wednesday and Thursday night, we hit DefCon 1.

Wednesday night, I woke her up to take her meds and that is never a good thing.  She was upset, and tired and all she wanted to do was go back to sleep.  Easy solution - take 4 pills and go back to sleep.  Not with Presley.  It's like an Angelina Jolie movie.  She would rather fight, cry, rock, and watch TV than take her pills and go back to sleep.  Sparks flew, but she finally got them down and we got a restful night of sleep.  This round has been mostly restful for us except for the frequent trips to the potty - her & I.

I know most of you tolerate my ramblings because there is some humor behind it.  Tonight the rambling is my way of avoiding the situation.  So here is where the other shoe drops.......Thursday, they dropped the hammer on Peri-Ann.

Thursday was a stressful day for Peri-Ann and I had no clue until I called around 6:00pm to ask what Pres wanted me to bring for dinner.  PA said she didn't want anything.   I asked how the day went and she said "I'll tell you when you get here".  Ruh roh Raggy!!!!  Here's the scoop:

Andrea (nurse practitioner) told PA that cardiology had been consulted regarding Presley's echo and they were on their way to talk to her.  She said not to worry and that she thought everything would be normal.  Unless, you have just tuned in, nothing is ever normal in this treatment.  When Dr. Knutsen came in the room, he started discussing Presley's echo and that there has been heart damage.  Yep.  Once again, a doctor comes in the room and delivers bad news in front of our daughter without telling the parents first.  Presley asked them to step outside and discuss it.  (She can step up to that but can't take a pill?  Huh?)

So, here's the deal.  When you sign a release for treatment for leukemia, (or any kind of cancer that requires chemotherapy), they notify you of the possible side effects.  They put it into three buckets - Likely, Less Likely, Extremely Rare but Serious.  Every drug or procedure has the same criteria connected to it.  In 2011, it will look like this:  likely, less likely, extremely rare but serious & Presley Boydstun.

During chemotherapy, one of the "extremely rare but serious" side effects is damage to the heart muscle.  Dr. Knutsen told Peri-Ann that  a drug or combination of drugs has effected Presley's heart function.  Her left ventricle is not operating at a normal level and squeezing enough of the blood to sustain normal function. They found this out through the echo but one symptom is high heart rate.  Presley has been in the 120-150 range for the past couple of months (see ICU stay) where normal resting heart rate should be around 80 bpm.  In Eric terms, her heart has been working double time to provide her body with the oxygen it needs. 

The technical term is "chemotherapy induced, cardiomyopathy".  The truth is the chemo induced to kill the leukemia took a toll on her heart.  Most likely, it is a drug called daunoreubicin which thankfully we have no more doses on the road map.  Unfortunately, the drug that stops Philadelphia + (Gleevec) is also shown to cause cardio toxicity.

They handed all of this to Peri on Thursday afternoon.  Andrea, Dr. Knutsen (cardiology) and Dr. Redell bombarded her with diagnosis, information, treatment recommendations and alternatives.  I was totally unaware until I got there that evening.  Of course, I had 50 questions for Peri-Ann she couldn't answer.  She anticipated this and they had asked the cardiologist to come by in the morning to give me the detail I wanted.  In fact, PA told Dr. Redell that I was unaware and Dr. Redell said "So I can expect a text from Eric tonight?".  I let her have her family time.
 
So, Dr. Knutsen explained to me Friday morning Presley has some mild heart damage from either daunoreubicin or the gleevac.  They are not sure which chemo caused the damage and therefore can't determine whether it is reversible or not.  He explained to me that her case now is mild but felt there was enough damage that she would never be able to become a world class tri-athlete.  I explained to him that the genetics passed down from Peri-Ann & I pretty much took care of that prior to the chemo damage. 

They started her on a drug called Carvedilol (Coreg) that will help her heart pump the blood.  It is a beta blocker that is used with adults with congenitive heart failure.  Sounds great doesn't it?  They will continue to monitor her heart function and may add another drug that works in conjuction with carvedilol called enalapril.  They are waiting until after this round of chemo to decide.  Along with the drug therapy, they are going to keep her Hemoglobin count higher so her heart doesn't have to work as hard.  Typically in chemo patients, they don't transfuse until the red blood count drops below 8.0.  They are going to keep Presley above 11.0 now.  She has typically been between 8 & 10 during her treatment, so she will be getting transfusions much more frequently. 

The other side of this lovely story is the Gleevec.  They know dauno can cause heart toxicity and there is some data that shows Gleevec also causes heart toxicity but the research is mainly in adults.  Initially, they gave Peri-Ann three options:  (1) Put on heart meds and continue Gleevec (2) Switch from Gleevec to a new inhibitor called Dasatinib or (3) go straight to transplant. 

Peri-Ann and I had a discussion and we are perfectly aligned.  Don't change what is working.  Taking her off Gleevec is not an option at this point.  It has worked and the last tests show no evidence of the Philadelphia chromosome.  We don't want to change to Dasatinib because there is even less known about it.  We know Gleevec, understand the risks and will continue down the path.  We will be frequenting the cardiology floor now but that is an acceptable trade off.  Transplant is going to be our last option.  I also spoke with Dr. Redell and she is agreement with us.  Keep forging ahead - cautiously.
 
So, other than that things have going well.  Should be out of TCH by 5:00pm Saturday and no planned hospital stays until February 9th.  PA & Pres will be putting some miles on the car though with more frequent trips to TCH the next couple of weeks and now months.

On a lighter note, we have a budding runner in the family.  Piper ran in her school fun run on Thursday morning and completed 35 laps before the time limit was up.  She also finished first in her classroom.  Papa & PA were there to cheer her on and there is some funny video and pics.  We are all very proud of her and the fun run helped raise money for physical fitness equipment at her school.  Thanks to those that sponsored her run.

Finally, I was remiss last week and left a Team Presley marathon runner off the update.  I have mentioned Jarrett Hubert in a couple of other updates and he has Team Presley pics from his tri-athlons on pbkicksit as well.  We met Jarrett through Debbie & Preston Roobaert a couple of weeks before diagnosis and then ran into him on the 9th floor one weekend.  He volunteers at the Ronald McDonald House three Saturdays a month and they run the family room on the 9th floor.  Anyway, he ran for Team Presley last weekend and finished the 26.2 in 3:20.  Not bad.  Thanks Jarrett - You are awesome.
 
Also, for all the single ladies reading this:  He's young, handsome, smart, has a great job, runs marathons & tri-athlons, and volunteers at the Ronald McDonald House.  Call me if you're interested. 
 
Holy Cow, I just turned into a pimpin' Chuck Woolery.  Sorry Jarrett.
 
Thanks to all of Team Presley for running, calling, texting, hoping and praying.  Love to all.

1/12/10 - 1/19/10:  (Update from Eric)  Is this really becoming routine?......

Two weeks have passed since Presley was in TCH for MTX treatment and it seems like yesterday.  Although Presley & Peri-Ann have made several trips to clinic, it just seems like her time at home flies by and her time at TCH creeps by at a snail's pace.  One of my favorite writers is Stephen King.  Most people know his horror stories and his weird tales, but he has also written some great tales of the human spirit like "Shawshank Redemption" and "The Green Mile". 

He also his written several volumes of short stories and in one obscure story called "My Pretty Pony", an elderly man  gives his grandson his pocketwatch and explains the nature of time.  He explains that as a person gets older, time moves faster and faster and slips away in great chunks.  I am becoming intimately familiar with this concept.  However, the old man explains that there is also "slow time" and specifically refers to being ill in a hospital.  Stephen King has never been more descreptive of our recent hospital stays.

So, we have just started day one of our "slow time".  Peri-Ann & Presley got up to make a 7:40am appointment this morning in clinic.  The plan was to access her port, check blood counts, begin hydration for chemo and then off to PACU for a lumbar puncture (spinal tap).  The hard part of this day would be the waiting.  PACU was not scheduled until 1:30 so no matter how good or bad the counts were, they would be waiting around all day - "slow time".

Presley's ANC was through the roof even from last Friday's checkup - 8340 so she has the ability to fight off infection.  Platelets were also good, but her red blood cells were 7.7 and she needed a transfusion.  So she got whole blood and slept during the "slow time", then went to PACU for the LP.  Although she handles anesthesia and the LP's well, she always gets upset.  PA said today was no different and she woke up weepy but famished.

After PACU, she got moved to the 9th floor which had an UNBELIEVABLE 8 open rooms.  In fact, there are still 7 open rooms tonight.  I am not sure it has ever been this quiet up here and that means that cancer kids are home and not here.  Thank God.

Presley has completed her first round of etoposide and cytoxin and it has gone relatively well.  She had some nausea but overall is sleeping peacefully.  The major side effect from this round of chemo are the mouth sores again.  There is a mouth wash she has to use four times daily but doesn't prevent the sores - only keeps them from getting infected.

It amazes me how much support we receive from people during this long journey.  When Pres was first diagnosed, Coach McElroy immediately came to Houston to give us guidance and advice because he too had been through a battle with this disease.  One of the things he told us was to "let people help" and that "after a while, you feel like you are burdening them with your fight".  He said it probably wasn't the case, but it feels that way. 

At times, I feel this way - especially when things are not going well.  I never want to be one that darkens your day with bad or difficult news.  It's a long war and I don't want to wear out my welcome.  But people continue to astound me with outpourings of love, and the gestures and support hasn't faded as I thought it would.  Don't get me wrong, I never felt that the love for Presley or my family would lessen as this war went on.  It's just that I never thought people would keep it as front and center as it has been.  You have your own lives and challenges, yet you still find the time for Presley and I will be forever grateful.

This weekend we stayed downtown on Saturday night for the marathon.  We had several friends running and most were running in support of Team Presley.  The world continues to get smaller during this war and we had a couple of our friends come together in a weird way.

Brett Donohue, "Donoho" as I nicknamed him years ago, has run several marathons including Boston in 2008.   He called me a few months ago and said he was going to run Houston and wanted to run in honor of Presley.  He didn't know how he was going to honor her but he would do something.  I told him we would be honored and if Presley was healthy, we would get together and support him during his run.

Fast forward a couple of months and my friend and co-worker Jim Palamara calls me into his office.  His wife, Blythe, has a PR firm that represents the Houston Marathon.  They always ask people to submit stories explaining why they are running.  Whose story comes across her desk - Brett Donohue - running for Team Presley.  Kind of cool how the world gets smaller. 

So we went downtown Saturday night and stayed at a hotel along the race route.  We saw Julia & Jim Palamara running the half marathon.  Julia smoked her dad by the way.  Then we followed the race route to the finish line to meet Brett.  A funny thing happened as we walked to the finish line - Piper got the running bug.  It was hilarious.  She would run to the end of each block and we would have to make her wait until we caught up.  I yelled at her a couple of times but she was going to run just like all of the other runners.  Consequently, we are going to put her in a race or two this spring to see if she really likes it.

We made it to the finish line and because Blythe had gotten us media passes, we waited inside the George R Brown for Brett.  Somehow we missed him as he finished but finally caught up with him and the entire Donohue family.  Not only did Brett run, but his sister, Tracy and mom ran the half for Team Presley.  Little gestures mean so much but running a total of 52.4 miles as a family?  Where does that land?  Brett also gave Presley his finishers medal.  She tried to say no, but he wasn't having any of it.  Not only did the Donohue family run for Team Presley, but Brett recruited a couple of his friends as well.  Unbelievable.

I would also like to tell you about another member of Team Presley.  James Stone runs the chemicals and wiper blades marketing for Shell Car Care.  He is a health and fitness guru and like most people in this world, cancer has touched life as well.  So, as he and I are having a discussion about Presley the other day, I began telling him about her weight, nutrition and strength issues.  He asked if he could make some recommendations for nutritional supplement drinks and I told him sure.  He gave me the low down on some drinks and made some brand recommendations.

Then yesterday, he called me to his office.  In a wheeled Igloo ice chest, he had a selection of every nutritional supplement drink he had recommended - all chocolate flavor - Presley's passion.   He and his wife have tried every single one and he assured me his wife would not suggest something Presley wouldn't stomach.  Along with the drinks were magazines for Presley and a card.  We are extremely grateful for the thought, time and effort put into the gesture.

Finally, thank you for reading these ramblings.
Thank you keeping us in the front of your hearts and minds.
Thank you for praying for her health and recovery.
Thank you for all of the texts, calls, and emails.
Thank you for being Team Presley.

1/4/10 - 1/13/10:  (Update from Eric) Yep, I've been slacking off........
I apologize to everyone for the long delay in updates.  Presley has been out of the hospital since January 5th and been home recovering.  A lot has happened but not a lot has happened.  Understand?  Probably not.

I last left you on January 3rd, still in the hospital and Pres' MTX number was 0.15.  We needed below 0.10 to be discharged.  The morning of Monday, January the 4th, the level had dropped again to 0.12.  Oh, so close.  Hoping for a good number on monday night and we were getting excited about the TCU game.

Then, she became a TV star!!  Here's how it all came about.  After the first appearance from Kevin Klein's courageous run through Texas, I emailed the reporter (Chris Stipes) and thanked him for putting her on TV.  Earlier that day, we had to tell her we weren't going to the TCU game.  She was crushed.  We had tickets, airfare, hotel, the whole works, but she wasn't going to clear and even if she did wasn't strong enough to make the trip.  I love her and will indulge her wishes right now, but not at the risk of her health. 

Anyway, Chris emailed me back and asked permission to interview her and the ball started rolling.  They came to the hospital and Chris just talked with her for about 20 minutes.  He was great and she was nervous but did very well in spite of the camera.  The took a few more shots, interviewed the "fat guy" and got out before the game started.

Debbie and Preston Roobaert then joined us for the game and brought a tailgate style dinner.  The Frogs were so close.  The nurses thought we were nuts and I am sure our neighbors hated us during the game.  So, as the game was going on, we got the MTX level back from the 7:00 labs.

0.14!!!!  What the heck?  They went UP!!!!  How in the heck does that happen?  I almost blew a gasket.  I kept the results to myself until after the game and everyone was gone.  By that time, Pres was asleep and just wanted rest so we hoped for a lower number in the morning.

So, on January 5th, Pres hit 0.08 but needed blood.  She got the transfusion and got to go home.

She has been home since and has been getting stronger on a daily basis.  She has battled severe mouth sores and has been on TPN until yesterday.  Pres & Peri-Ann went to clinic and her numbers were decent but good enough to be deaccessed.  Huge relief and change in lifestyle.  Showers.  No longer chained to an IV bag and a pump at night.  Little things. 

Her immune system is still low so we have to be very careful.  The cold & flu season is upon us and every precaution must be taken.  We must keep her fever free during these times.

The plan is to go back to clinic to check counts on Friday.  We have another round of chemo scheduled for the 19th which will last five days and will require hospitalization.  She will get Etopicide & Cytoxin for 5 consecutive days and another drug (mesna) to protect her bladder during these  treatments.  She has handled these drugs fairly well in the past, however, they did give her mouth sores.  That seems to be the biggest nuisance of side effects recently.

Thanks to everyone for the notes & calls about the TV appearances.  She received several blogs on the site from friends we have not met yet and that touches our hearts.

thanks for all the texts, emails, thoughts & prayers.  They truly have an impact on her spirit and ours as well.

12/31/09 - 1/3/10:  (Update from Eric) Happy New Year!!!  Sort of........
Well, as usual my predictions about Presley's hospital stays are about as good as Mike Leach's concussion treatments.  When I left you last year, Presley had just finished the methotrexate treatment.  Our past couple of MTX treatments were monitored closely due to the horrible reaction to the initial treatment.  We followed the same protocol as before - Off all meds 24 hours prior to treatment, 6 hours of hydration and then monitoring levels at Hour 2 / Hour 6 and then determine what, if anything needs to be done. 

Her MTX level at Hour 2 & Hour 6 were within parameters and acceptable.  Hour 24  was 76.14 - high but still ok.  The bag came down and they started her on fluids.  It's a delicate balance.  They want to leave the MTX in for another 18 hours to do it's magic but at the same time, flush it with fluids.  They started leucovorin (a drug used to flush MTX) at Hour 42 and her level is hopefully around .40.    Unfortunately, it was 2.30.  Uh oh, we've been here before.

Hour 48 was 1.34 and they want it close to .10  Trouble was on the horizon.

Hour 72 was @ .44.  We are settling in for the long haul, but Presley was crushed at the number.  It meant we were spending the weekend in TCH.

We had made reservations to fly to Phoenix, provided Presley was healthy enough and watch TCU play Boise State in the Fiesta Bowl.  There was no way we were going to make it out for our flight and I'm afraid we may be watching the bowl game in Room 910 at TCH on Monday night.  Andy Dalton, TCU Quarterback, has been wearing a Team Presley bracelet since practice started this summer.  He and Presley have developed a nice little relationship.  Presley texts him before and after games and Andy even got a penalty for pointing to Presley's bracelt after scoring a touchdown this year.  They had never met face to face and were hoping the bowl game would present that opportunity.

Presley was very upset.  One thing I have learned over the past seven months, is to manage expectations with not only Presley, but myself and the rest of the family.  Making plans and raising hopes to pull off this trip, was a bad choice on my part.  In our situation, we really can't plan day-to-day, much less a month or even a couple of weeks in advance.  I blame myself for her disappointment.  I know better.  

Presley was feeling OK despite having to pee every 30 minutes and the diahrrea. (that sounds bad, doesn't it.  Diahrrea isn't fun for anyone, yet seems minor since this ordeal started).  She was actually stronger than the past couple of weeks so things were OK.  Her creatinine and BUN (kidney function) were all looking normal and good.  However, the longer it stays in the body, the more likely other side effects will kick in.  

So, we celebrated the New Year at TCH.  Piper was with our friends Jim & Deana (Blake's parents) at a New Year's party.  Piper & Toni (Blake's sister) used to hang out on the floor when we were both on the 9th floor and siblings were allowed.   So, PIper was chomping at the bit to spend the night with her when Jim & Deana asked if they could take her with them. 

Meanwhile at TCH,  Presley was tired but feeling ok.  We made Presley get out of bed at 11:45.  We told her she wasn't starting the New Year laying in a hospital bed.  So, we popped the bottle of Welch's sparking grape juice and toasted the New Year at the nurses station.  Funny, we were the only family up doing this.  I know the nursing staff thinks we are crazy and they are probably right.

Plus, we had one of our favorite nurses, Steph, on call that night.  She was fresh back from a visit to Minnesota to see her boyfriend who plays hockey for the Houston Aeros and was called up to the NHL Minnesota Wild.  Of course, Peri-Ann had to ask "uterus" type questions like, "How did you guys meet?", "Is he the one?", etc.  So she proceeded to tell us the story and that they were in love.  Of course, being the lone sample of testosterone in the room I exclaimed "You're in love and you got a Minnesota Wild sweatshirt - it must be serious".  I believe sarcasm adds levity to any situation.  My wife & Stephanie disagree.

So Peri-Ann & I alternated getting up every 30 minutes with Presley and woke up to 2010 on a pull out couch.  

January 1, 2010 brought about football, black-eyed peas and Presley winding up on Fox 26 News.  However, Presley's MTX count did not give us any reason to celebrate the new year.  It moved to .37 and then stayed there for the entire day.  However, we did have a rather fun & strange day. 

Kevin Kline is a radio DJ for 93Q Country here in Houston.  He founded the Snowdrop Foundation a few years ago to raise awareness and funding for childhood cancer care & research.  This year, he attempted to raise $500,000 and awareness by running from Dallas to Houston, via Austin & San Antonio.  481 Miles.  In 13 Days.  Totally Insane!!!

On New Year's Day, he finished his ultra-marathon at the TCH Clinical Care Center and invited all current and former patients to run the final block with him.  We all went down from the 9th Floor to join him.  Blake, Bucky, Johnathan, Caden and all of the gang were there to run with him.  Presley was weak but excited to down amongst the crowd.  Unfortunately, she was the only child still connected to an IV and we stuck out like a sore thumb.  A news crew from the local Fox 26 station, grabbed us as we went to the area to join Kevin in his final leg.  They grabbed Peri-Ann initially and she shoved them off on the fat guy.  I answered several questions very eloquently.  The camera loved me.  And then he moved to Presley and asked her a couple of questions.

When I watched the broadcast at home that night, my gargantuan head only got 2 seconds and the rest of my interview wound up on the editing room floor.  They say the camera adds ten pounds.  I don't care.  I had Nutrisystems on the line 10 seconds after the piece ended.

Presley, however, was a star.  She did a great job and my phone started lighting up with messages confirming my opinion.  Piper, on the other hand, wasn't so happy.  She was not happy she didn't get on TV while Presley & Peyton did.  I comforted her and told her not to worry.  There is an episode of "Cops" in her future, I am sure of it.

Anyway, the MTX started taking it's toll late Friday afternoon and Saturday.  Presley started developing mouth sores and now her entire mouth (tongue, inside cheeks, gums and throat) are covered in ulcers from the MTX.  This has happened only once before with another drug (ARAC).  It is difficult for her to eat and talk.  We basically now have to manage the pain and try to keep them from being infected.

Her MTX level at 9:00 PM tonight was 0.15.  We need to be below 0.10 to get discharged.  It sounds like it's easy and within our reach, but it is more like a 4th down and long 1 yard.  They have doubled her leucovoring and will continue fluids.  She also had to have another whole blood transfusion because her counts were low.

All in all, she is doing OK.  Emotionally, the number trickling down is harder on her than the physical aspects.  She just wants to go home and I agree completely.  However, we still have to get her below the level before being discharged.

Thanks to everyone for the New Year's Well Wishes.  We love the texts, emails, calls, fb, thoughts and prayers.  We couldn't make it through this without the support of Team Presley.

Hoping everyone has a Happy, HEALTHY, and prosperous 2010.

12/29/09 - 12/30/09:  (Update from Eric)  Merry Methotrexate and a Happy New Year.....

Presley completed the 24 hour dose of methotrexate last night around 10:00 pm.  All went as expected.  Her levels stayed within the normal range and the expected side effects (nausea & diahrrea) have dominated the last couple of days.  Monday night / Tuesday morning was a long one for Presley & I.  She was up every half hour or so in the bathroom so not much rest was had by her or myself.

Papa, Bicki, Peri-Ann and Piper showed up around 11:00 to relieve me for a little while.  Peri-Ann, Piper & I went to lunch leaving Papa & Bicki to watch Presley for a little.  What do you think showed up?  Boydstun Hospital Law.  When we came back, it turned out there was a little drama in our absence.  Katie (one of Presley's favorite nurses & TCU alum) has been our day nurse since we checked in on Monday.  Well, she made a slight error with the IV and combined Zofran (anti-nausea) with the methotrexate.  It wouldn't be a big deal except Presley has bi-carb fluids and Zofran is incompatible with bi-carb.  Simple mistake.  Has happened to every nurse at one time or another.

However, it clogged up the IV line and Presley had to get re-accessed with a new needle.  Not her favorite experience.  Katie was crying, Presley was crying, it was a great situation for Papa & Bicki.  When the TPN nurse (IV specialist) came to reaccess, Presley wanted Katie to be there with her.  It made Katie feel even worse.

When we got back to the room, all was quiet and over but Vicki met us in the hall and let us know what had happened.  So what did I do - what I do best of course.  Give Katie a hard time.  First thing out of my mouth was "OK, what the hell did you do to my kid?"  She turned pale white, started apologizing, and almost started crying.  I actually felt bad for her.  She loves Presley and I know she felt awful.  Did that stop me from giving her a hard time.  Of course not!!!!

Piper & I left to head home for a while.  I needed a nap and shower.  Piper needed some space.  They lifted the sibling ban for the holidays but aren't allowed in the playroom.  Piper was bored instantly.  Before I left, I asked Katie in front of Suzanne (the nurse practitioner), "is it safe to leave my kid here for the next few hours?".  Apologies abound again.

At 10:00 pm, they took down the chemo and started IV fluids.  Here levels were good and her electrolytes were coming back up.  Good signs.  The night was again full of potty breaks but every couple of hours instead of every 30 minutes. 

Katie is our nurse again today and showed up at shift change with purple TCU sock monkey and a couple of teen magazines for Presley.  I told her it was unnecessary, but she said it made her feel better.  What a great kid!

At 4:00pm today, they will give Presley Leucovorin which is a drug that flushes out Methotrexate quicker than regular fluids.  She will get leucovorin three times over 18 hours and check her MTX levels at the same time.  As long as her levels are below the parameters and she continues to clear without problems, we should be out of here Friday afternoon. 

Thanks for all the calls, emails, texts, fb, thoughts & prayers.

12/15/09 - 12/28/09:  (Update from Eric)  Like most everyone else, we survived Christmas........

Christmas was wonderful at the Boydstun house.  Uncle Greg headed home on Christmas Eve to prepare for his Vegas trip, so it was just the four of us on Christmas Day to see what Santa had delivered.  Presley wasn't 100% by any means but improves daily.  She usually calls for us once or twice during the night and she called around 2:00am on Christmas morning but PA & I didn't hear her.  Piper came downstairs and told us that Presley needed us and commented on the way back up to her room that there were some gifts under the tree that weren't there before she went to bed.  That's it.  Just making comments.  Went right back to her bed and asleep.

At 7:30am, Presley called for us again.  I got out of bed and went upstairs.  Pres wasn't in her room but in Piper's bed with her.  They were ready to get up and come downstairs to see what Santa had delivered but knew they weren't supposed to leave their rooms yet.  Do we have them trained or what?  So, PA & I prepared breakfast and mimosa's (for us) and began the Christmas present carnage.

After the melee, we went to the Palamara's for a wonderful Christmas dinner.  Blythe prepared the wonderful traditional turkey and trimmings and we provided the desserts (actually Princess provided the desserts - thanks again).  One funny moment was Blythe asked if any of us liked cranberry to which of course we said no.  "Well, that's $0.74 down the drain."  Obviously, the Palamara's don't care for cranberry sauce either.  It's a good thing she didn't go all out to try and impress.  She knows us well.  Thanks to the Palamara's for having us over and showing us such hospitality.

Saturday, we hooked up with the Thomas' and Beard clan and had lunch.  Presley's mood and morale improved dramatically around Jordan, Ashley, Alex & Abby.  She seems to feel stronger and better when her buddies are around.  Imagine that.

Papa & Bicki were waiting for us when we arrived home and Santa (Bicki) had been to our house again.  The girls opened more presents and we had a great evening eating dinner, watching football, and playing games.  Of course the games involved wagering - it's the Boydstun-Winder way.  However, Piper is catching on and doesn't seem to want to risk her own money anymore.  She uses Papa to front her gaming now and still does not lose gracefully.

Sunday, Presley continued to improve and gain strength.  It was another day of rest, relaxation and football.

Today, we came back to the real world and had a 7:50 appointment at Texas Children's.  The plan was to check her blood counts and if she made them (a long shot condering last week) be admitted for methotrexate chemotherapy.  Presley was not happy about being up early and I can say that I was in her camp.  PA, Pres & I got to TCH around 7:40 and got checked in.  Since she was already accessed, we checked in and went to the infusion room.  It was like homecoming week.  Grant & Caroline were there and we got caught up on each other's holidays.

We were paged to Band-Aid junction for vitals and then Nyree took us back to a room for the blood draw.  Presley has been on TPN (IV nutrition) since our last hospital stay.  However, the past couple of days when administering it, I had not been able to get good blood return on her port.  It would still flush and we could administer TPN but no blood return is not good.  Nyree tried as well but to no avail.  So, we drew blood the old fashioned way and replaced the needle in her port to see if that would fix the problem.  No Dice.  Same issue.  Flush but no blood return.

We
then made it back to a room and met with Cara (nurse practitioner) to determine if she made counts.

Cara walked in and said "she (Presley) continues to amaze us."  Her WBC count was 5250 - up from a big fat 30 last Tuesday.  5250 is actually in the normal range.  Unbelievable.  ANC was actualy 4250 which is an astounding increase from ZERO.  Red Blood cells were 9.1 (good) and platelets were at 97 (low but acceptable).

So, we went to 8 for an x-ray of her port to make sure it was still in the correct place.  No issues there.  Then to PACU for the traditional lumbar puncture with chemo.  Presley got a little upset before the anesthesia but was OK.  It's different each time she goes to PACU.  Sometimes she gets upset and sometimes she's calm before the LP.

In recovery, she was cool, quiet and collected.  No tears or emotions which she used to have upon waking.

The funny thing is the procedures are now commonplace for Peri-Ann & I.  Do we like our daughter going under anesthesia or having the procedures?  Absolutely not, but we are comfortable with the staff and routine of the procedure.  I remember the first one in May and it was absolutely terrifying.  Considering the circumstances, I understand my fear and reaction, but now it seems trite to have been so worked up about it. 

What was chaos and terror 7 months ago, has become our normal everyday life.

Wrapping up.  Presley started methotrexate chemo around 10:00 pm tonight and will receive 4 grams over the next 24 hours.  Although we have had problems in the past, we don't anticipate anything this round.  They have her dosage figured out and we know what to watch for when they take labs.  She will have nausea and diahrrea but we should be able to control them with zofran and phenegren. 

Barring any surprises, she will get leucovorin tomorrow night and fluids to clear the MTX.  We are keeping our fingers crossed for a Friday discharge.

Thanks to everyone for the Christmas calls, texts, emails, fb, thoughts & prayers.

12/16/09 - 12/24/09:  (Update from Eric)  We wish you a Merry Christmas........

Since I left you hanging, Presley came home after two days on the 9th floor.  After we got to the 9th floor, it was relatively calm.  In fact, they wanted to send her home, but Presley didn't feel well and was honestly a little anxious about going home - away from the comfort of the 9th floor.  So, we stayed an extra night and they discharged her Friday afternoon.  Of course, there was a little drama, as they didn't like her low sodium level.  We have been through this before and Peri talked some sense into them.

She was discharged but we are continuing TPN at home to maintain her weight and nutrition and she is also on an introvenous antibiotic.

The weekend was not very fun for Presley but she did enjoy the comfort of her own room and bed.  She felt absolutely awful and didn't get out of bed much at all Saturday and Sunday.  Monday was much of the same - pain in her legs, bones, joints and back.  We managed the pain with Tylenol with codeine but she slept most of the time.

Tuesday, we all went to clinic to get her counts checked and a general checkup before the holiday.  She looked and felt awful, so they put her in a triage room.  They checked her counts and her red blood cells were ok, platelets were low but not in desperate need of transfusion but her white blood cell count was non-existent.  For a healthy 12 year old girl, the WBC should be between 5,000 & 15,000.  Presley's was 30.  Yep.  Big fat 30 which means she has NO immune system whatsoever.  They gave her fluids and we had several discussions with the HemOnc doc on call - Dr. Craddock.  They were leaning toward admitting her, but we asked what they were going to do for her in the hospital.  Fluids and watch for fever.  We could do that at home so they allowed her to go home.

Wednesday she was a little better and a little stronger.  Uncle Greg confirmed it when they started pestering each other.  That's the litmus test when Uncle Greg is around.  If she fights back, she's a little closer to normal.  The Bortmess family came over Wednesday evening and Presley hung out for a while.  Another sign she is a little stronger and a sign that she needs more than just mom, dad and Piper to lift her spirits. 

She continues to improve each day and today was another step forward.  She's in less pain and gets around a little better and sleeps a little less.

If all continues in the right direction, we go back to TCH on Monday to check counts and if she makes it will start another round of methotrexate treatment.  Originally, this chemo was the worst, but now, I can look forward to it because her body has figured out how to metabolize it and clear it quickly.  MTX doesn't have the major side effects like the round of chemo we just completed.

On a personal note, I had a moment last weekend when Presley was in ICU.  On Sunday morning, our third day in ICU, I came home to shower and repack some clothes for the next couple of nights.  Piper was staying at a friends and Peri was with Presley at the hospital.  I came home to a quiet house and an unlit Christmas tree.  I sat down on the couch, exhausted from a long, sleepless night in ICU and looked at the tree.  In the middle of the tree is a large decoration that says "This Home Believes".  I think it is supposed to mean this home believes in Santa, but it hit me right in the solar plexus.  I just started crying.  It was mainly worry and exhaustion, but a million things were going through my mind looking at that simple phrase.

"This Home Believes". 

Never before have I needed to believe. 
To believe that God has planned a long and meaningful life for Presley.
To believe that modern medicine will finally find a cure for this disease.
To believe that despite all my inadequacies as a father, husband, son, brother and friend, I am doing all the right things in this fight.
To believe that we are paying enough attention to Piper during this saga.
To believe I can be a good father and a good husband at the same time.
To believe that all the prayers from Team Presley are being heard and will be answered.

My philosophy of life has always been that "In the end, all we really have is family, friends, and memories."
I was wrong.  We also have belief.

I believe.

Merry Christmas.

12/29/09 - 12/30/09:  12/15/09 - 12/28/09:  12/16/09 - 12/24/09:  

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12/15/09 - 12/16/09:  (Update from Eric)  Home, Sweet, Second Home.....

I last left you with blood pressure under control and fever free.  Presley has continued that trend for over 48 hours and we are now on the 9th Floor of TCH.  Let me just say that the 9th floor room 36 is the Ritz Carlton of the hospital system right now. There is a luxurious bathroom with toilet AND shower, 19" color TV, storage for belongings & a FULL SIZE BED that I can lay flat on!!!!  Heaven!!

Presley is stable, doing well but completely exhausted.  ICU is not a place where David Hasselhoff would go to recover from "exhaustion".  It is absolutely impossible to get rest, however, the care of the NURSES in ICU is first rate. 

All of our ICU nurses were good, but Bob (night nurse) & Sandy (day) were exceptional.  Unfortunately for them, Boydstun Hospital Law reared it's ugly head in the ICU AGAIN and Bob & Sandy helped manage both us & the ICU staff.

This time I was at work and again arrived at the hospital in the middle of a firestorm.  I am beginning to believe that we are the test subjects in a bizarre behavioral hospital project. Hospitals make their staff put us in awkward & uncomfortable positions to see how we react.  This time, instead of communicating next steps, the PA decides we don't need to know anything instead of explaining everything to Presley.

Presley had been stable for 24 hours and they had secured a room the 9th Floor.  The team had just made rounds & moved on to the next room. Peri was packing up to move to the 9th floor when someone knocked on the door. They said they were there to do another echo cardiogram on Presley. No one had notified PA or Pres about the procedure.  PA grabbed the doc at the next room and asked why Presley was having another echo.  It seems that the original echo on Monday was read to have a blood clot near Presley's port-a-cath.  No big deal - a BLEEPING BLOOD CLOT!!!  Peri lost it on everyone & especially the PA that neglected to tell her again.

So, after it calmed down, they did another echo. 

Henceforth, we didn't get to move to 9!!!  Presley was emotionally crushed.

I arrived and Bob was managing the hospital staff & trying to recover credibility for the hospital.  It seems in ICU, that most kids are so bad off that there is no resistence from parents on any level.  No matter, they had failed twice in our eyes.

Finally, they came in later and told us there was no clot and it was a misread.  Presley was safe to move. Unfortunately our window had closed. I even made a stop on 9 and begged the charge nurse for a room. I'm a Diamond Member @ Hilton, I must be a Quadruple Diamond Member @ TCH. No rooms at the Inn.

So, Presley settled for another night peeing in bed pans & loud nurses & I settled for sleeping in a chair. 

PA arrived to relieve me yesterday morning but I had already "confirmed" from the PA that she was being transferred to 9. He explained everything in detail & and "confirmed" with the HemOnc doctor.  It was a swap.  A non-cancer kid on 9 was needing ICU & we were getting their room.  So PA, Pres & Papa (who has been a saint) moved up to 9 around 1:00 pm. Presley's attitude changed dramatically. Although she was exhausted she went & hung out w Caroline and was in a great mood. 

She slept well last night (not as well as I did) and is still sleeping this morning. Currently, she is getting another platelet transfusion (this makes 5 this stay) so she can go to PACU later and get her spinal tap. The spinal is the last part of this round of chemo.

After that, it's really a watch to see how she feels thing. She may be able to go home tomorrow. We will be going home on TPN & IV anti-biotics. It doesn't matter though as long as we are home.

Will keep you posted.

Hugs from Presley. Thanks for all the emails, texts, calls, fb, thoughts, and prayers.


12/14/09:  (Update from Eric)   Progress, sweet progress.......

After last night's scare and debacle, the morning and afternoon went relatively smooth.  Presley woke up and was very emotional.  She did not sleep well at all during the night (who can in a hospital, much less ICU) and she was still very tired.  When PA arrived, Presley just broke down and cried in her arms.

Sandy was our day nurse again and we went through the day with her before I left for work.  Of course, as soon as I left, the plan changed.
>  They were contemplating holding off on the scheduled Vincristine chemo push - Definitely not doing the spinal tap.
>  They took her off food and fluids.  The BP medicine can cause some issues with the stomach so they didn't want anything in it.  Too late, she had already eaten a hard boiled egg for breakfast.
>  They needed to do a blood draw out of her arm.  They couldn't get blood return on the IV they put in on Friday.  The port had so much medicine in it, they were afraid to disrupt it.

Even with all this going on, Presley started making some forward progress:

Her blood pressure started to come up around noon and they started pulling back on the medicine. 

Around 2:00, her fever broke and she has been fever free since then - Praise the Lord. Her blood pressure continues to improve and they have backed off the medicine accordingly.  They went ahead and gave her the vincristine push around 6:00 pm. 

By the time I arrived, she had a normal pressure 105 / 80 and her heart rate was around 110.

However, they still wouldn't let her eat and that has been the most difficult thing to deal with this evening.  It actually seems trivial after the past 3 days.  Every time a food commercial came on the TV, she would start crying - combination hunger and exhaustion.  We convinced them to let us have a "clear" diet, so she ate a cup of jello while taking her evening meds.

They have dialed back the medicine and she still has strong vitals.  She is sleeping quite well for the moment.

I can't tell you what the plan or timeline is but at least we are in a better place than 24 hours ago.

I apologize for the lack of creativity tonight.  I am working on a few hours sleep over the past 48 hours but I wanted you all to know she has improved significantly.

Thanks for all of the texts, emails, calls, fb, thoughts and especially prayers.  They delivered her through a very rough time.


12/12/09 - 12/13/09:  (Update from Eric)  Starting Day 4 in ICU.....
The last 36 hours have been pretty intense for Presley. Even though they thought they got her BP stabilized and took medicine off on Saturday morning, it continued to erode and hover around unsafe levels.  Her heart rate continued to be in the 160-170 range and her temperature was all over the place.
Much to Presley's dismay, they told her she would be in here for at least another 48 hours.  There is still nothing growing in blood cultures and anti-biotics seem to be working on her urinary tract infection because her back pain is much better.  However, the fever still is there so she is not out of the woods yet by any means.

Yesterday, I went home for a few hours and came back around 7:30 to a fire storm. Some jag Physician's assistant came in while PA was on phone and explained a procedure they were going to do to Presley. PA lost it on him. He was unprofessional & stupid for telling a 12 year old girl something without discussing with us or even asking for our consent.  So when I arrived, Bob, the night nurse, was trying to calm PA & Presley down & explain what was going on. I told him to give us some time. A few minutes later, the doctor on call came in with Bob and we had a long discussion.

They had put Presley on another BP drug to help elevate it to a safe level. They had a very small dose going and it wasn't making any impact. However, before they increased it, they wanted to put in an arterial line so they could monitor Pres BP in real time.  An art line is essentially the same as an IV except that it goes on the artery. They would deaden the area, insert a needle and then insert the line that has sensors on it that can constantly monitor her BP.  I asked several questions, challenged why we were treating the signs of the infection instead of the cause and finally was satisfied with their diagnosis. 

Guess what happens next.....Boydstun Hospital Law. 

Presley was prepped for the procedure and given Atavan to relax her. Finally, the doc came in and we were ready to go.  Against their wishes, I stayed in the room with Presley.  They gave her a local which got her upset and then they TRIED the procedure.  The needle went in and hit artery as blood poured out, then she tried to put in the line and couldn't get it in. She tried three times and finally gave up.  The whole time Presley is screaming and crying. The doc told her that she should be in the opera. It took all I had to not jack her jaw.

So, the end result was traumatizing my kid even more and no success.  They gave me a wide berth in the ICU the rest of the evening.  PA finally went home around 10:30. At 11:30, the doc said they we're going to increase the medicine without the art line.  They doubled the dose. Still no impact. 

At 3:00 am this morning, Presley's BP got dangerously low (58/35).  I was watching the monitor and obviously Bob was too because he came in and took her BP again immediately. Same.  He called doc and they increased again. We watched the monitor for the next hour & a half.  Finally, it started to come up.  At 4:30, it was finally at 97/60 and maintained for the next three hours. Along with that, her heart rate came down to the 135-140 range. Still high, but better.

During all of this, Pres was in & out of sleep & dreams.  It was hard to tell if she was awake or talking in her sleep. Her imagination was working overtime no matter which state she was in.

Currently, she is asleep and they increased her dose again to maintain a good BP (92/62).

PA is taking over & I will head to work for the day.  Will try to keep everyone posted somehow throughout the day.

Thoughts & prayers needed and appreciated.



12/7/09 - 12/11/09:  (Update from Eric) The other shoe dropped.....

As I explained in the last update, Presley has a difficult time with this round of chemo. It really knocks down her counts and she experiences quite a bit of lower back & leg pain.

I returned home from California on Thursday evening and she was not feeling well at all. She tried to eat dinner but couldn't keep it down. She felt warm but wasn't running a fever. While in California, I called Dr. Redell and we decided to bring her in to clinic to check counts and possibly get fluids.

So today, I met PA & Pres @ TCH around 10:00. Clinic is usually a madhouse but today was a complete zoo. Four radio stations were there on the 14th floor broadcasting live for the Miracle Makers TCH Cancer Center drive.  We did get to see our friend Bucky there talking on the radio live. He has one more round of chemo and will hopefully conquer Ewing's just like Blake.

So, it was total chaos as I went with Pres to BandAid Junction to get accessed and labs.  As we were walking to BAJ, she got light headed and a little dizzy.  They checked her weight, blood pressure, and temp and then decided to send us back to triage since her pulse rate was high (150) and BP was low (80 / 42) . Triage is a an area off of the infusion center, where you get your own room & bed for fluids, procedures, etc. 

They accessed her port there and Pres did amazingly well.  She didn't "freak out" before they poked her and she barely whimpered when they did.  Since her BP was low & pulse high they started pumping her with fluid.  They ran labs to check for pancreatitis because of her back pain and went ahead and did blood cultures for infection.

Over an hour and a half she got 3 bowlus of fluids and had not improved her BP or dropped her heart rate. The labs came back and the counts were very low.
HGB (Red) - 8.3. Transfusio usually below 8
White - 0.01. Nada. This means she has no ANC - no ability to fight infection
Platelets - 7. Transfusion ahead.
So, with all of those factors, they decided they wanted to watch her very closely and sent us to ICU. 

When going to ICU, they send in an ER team to transport and it is quite a spectacle and somewhat unnerving.  PA & Presley were visibly shaken.  I think it is because they have watched too many hospital dramas and only bad stuff happens in scenes like today. I tried to stay out of the team's way and talked to Dr Redell most of the time the whole hubbub was happening.  She didn't seem worried so I tried not to worry.

We all went over to PICU and the team took Presley while PA & I checked in. They came and got us when Presley was settled. In all of our cancer escapades, we have never been to ICU.  Thank God for that.  If our 9th Floor room is Motel 6, the ICU is a roughing it in a tent.  No bed (other than Presley's) and no bathroom.  And it is loud, open chaos. 

Because of all the stuff they are giving Presley, they had to start a secondary IV. Pres was not happy but Randy did a great job & Pres took it pretty well. Then they started the IV barrage of fluids, antiBiotics, blood pressure medicine, platelets and blood.  Her fever spiked to 103 and they gave her tylenol & much to my dismay - morphine for her pain.

Currently, it is 11:00pm. She is sleeping and has finished platelets & blood and they have backed off her BP medicine in half. With a little luck, we may get moved to the 9th floor tomorrow whuch would be home, sweet, home.

She will be in until Sunday afternoon at the least.  The blood cultures take 48 hours to determine infection & how to treat.

Thanks to everyone for the texts, calls, emails, fb, thoughts & prayers. Will keep you updated.
 
12/1/09 - 12/6/09:  (Update from Eric) Frogs in the Fiesta Bowl.  TCU, TCU, TCU.

I last left the update with Presley going to the clinic on Tuesday for more dauno and then an admission for cytoxin on Wednesday.

Tuesday was uneventful as Presley was already accessed and the dauno push was quick and easy.  They were home about three and scheduled for a direct admission on Wednesday.  I was in Minneapolis on business and surprisingly enough it wasn't bitterly cold. 

Wednesday was a wild day.  Peri & Presley got the call from the hospital for admission around 1:00 and headed down to TCH.  At about the same time, I was headed to the Minneapolis airport to catch an earlier flight and head straight to the hospital to relieve PA and take the night shift.  Presley got admitted and was greeted by several of her favorite nurses - Debbie, Jennifer and Lindsey, her nurse for the rest of the day shift.  PA said Presley was very quiet and reserved on the trip down to TCH and thought she was a little down.  Debbie, Jennifer and Lindsey helped her mood immensely and she fell into her social self and roamed the floor until it was time for chemo.

I, on the other hand, was not having such a great time in MSP.  We got to the airport early and I paid $50.00 to confirm a seat on an earlier flight.  Things were looking good.  Then, as we backed away from the gate, the tell-tale sign of trouble - the engines powered down and then back up again.  Finally, the pilot informed everyone that there was a problem with the de-icer on one of the engines and they were heading back to the gate to check it out.  I'm no aeronautical engineer, but I think we need de-icers in Minnesota in December.  "Bye Bye Miss American Pie" suddenly burst into my head.

They couldn't get the problem fixed, so my co-workers and I got off the plane and got in line to catch the next flight - our original one.  Sorry, they had already filled our original flight and so we got the next one.  I finally arrived home around 10:45, picked up Piper and PA stayed with Presley - with no pajamas, make-up or clothes for the next day.  Not the way we planned it.

Treatment on Thursday went as planned and I took over my usual night shift that night.  Presley felt relatively well and if no surprises would be discharged Friday afternoon.  However, the whole hospital was abuzz about the possibility of snow on Friday.  And for once, the weatherman was correct.  Presley & I woke up to snow flurries outside the 9th floor of TCH.

Presley's cytoxin treatment went as planned - 4 doses over a 48 hour period - and she got discharged and home around 2:00 Friday afternoon.  Just in time to hunker down for the huge winter storm.

I grew up in SE Colorado and the Panhandle of Oklahoma and Texas, so I have seen snow, snowstorms and blizzards.  However, I absolutely ABHOR cold weather and snow usually comes along with cold weather.  The climate in Houston is partly why I love living here so much.  There really isn't much of a winter, in fact, it was 84 degrees last New Year's Day, so we heated the pool and let the kids swim.  I don't mind blistering heat and humidity really doesn't bother me either, so, the only way I live in a better climate is to become fluent in Spanish or Portuguese and figure out a different currency.  That's not really in my skill-set, so Houston is where I will continue to call home for a while.

On the other hand, most Houstonians don't see snow on a regular basis and driving in wet, snowy or icy conditions terrifies most of them.  I arrived at the office on Friday around 9:30am after leaving Presley & PA at TCH.  I met a couple of my co-workers on the way as they were headed out.  What?  Then Shell being the safety conscious company it is, puts out an email about the inclement weather and shuts the office down at 1:00.  WTH?  So, let me get this straight.  Sure, there are flakes of snow in the air, but melting as they hit the ground and a "snow day" is declared.

I talk with PA and she is headed home around that time and traffic is pretty heavy.  She asks what I plan on doing.  I am staying until I get my work done because I am travelling on Monday.  So, I hold my 2:00 meeting to a limited audience of dedicated car care marketing and sales people - about 10 people total and work until 5:45 and hit the road home.  It was like driving home at 3:00 am.  Not a soul on the road.  I could have gone 150 mph on the Hardy Toll Road and no one would ever know or tried to stop me. 

The winter storm amounted to a dusting of snow, 32 degrees, and whole bunch of panicked Houstonians.

Sorry, I got sidetracked.  Presley handled the treatment fairly well but this mixture of chemo has side effects that kick her butt.  She was tired all weekend long and had some pain in her mouth that we treated with a lidocaine mouthwash to numb it.  She also has serious bone, back and joint pain after this chemo.  She has been taking Tylenol w/ Codeine for the pain and we have been giving her massages and using a pain cream called Bio-Freeze.  It helps some, but it will take some time until she feels 100% again after this round.

On Sunday, we finished up the weekend by going to our friend Blake's Cancer Free celebration.  We met Blake and his parents, Jim & Deana on the 9th floor during our first couple of weeks of treatment.  I have written about them several times before and we have all become close friends.  They had a big luncheon and party over in Cypress and had 100 or so friends, relatives, kids, doctors and nurses in attendance.  Blake looked good and Jim & Deana put together a slideshow and presentation and recognized the people who had given them so much love and support in their battle against Blake's cancer. 

Presley didn't feel well but was a trooper and we stayed for a couple of hours.  We were leaving and Jim & Deana brought us up and told the story of how we met and how thankful they were for us.  Amazing.  They were the ones who were veterans on the floor and in the clinic and showed us the ropes.  I hope we can give back to them as much as they helped us. 

Natalia's parents, Dan & Melissa, also made an appearance.  I can't imagine the thoughts and emotions they were experiencing at this celebration.  Jim & Deana were celebrating the health of their son and Dan & Melissa are still mourning the loss of their daughter.  Strength, courage, love and faith is all I can say to describe them. 

Monday, Presley goes back to TCH clinic for another vincristine push and then will be done for the rest of the week. 

Thanks to Team Presley for all the emails, calls, fb, thoughts, and prayers.  They truly lift us up.

11/26 - 11/30/09:  (Update from Eric)   Back to reality......
After a great holiday weekend, Presley and Peri-Ann headed back down to TCH this morning for treatment and a couple of procedures.  Of course, the clinic was a total zoo after the holiday weekend and delays were going to be the norm for the day.  The appointment was scheduled for 8:20 and they arrived on time despite the Monday, rainy day traffic.  However, they didn't get to Band-Aid junction until 10:00 to check vitals, get her port accessed, and draw labs. 
They saw Cara (nurse practitioner) at 10:30 and then headed to PACU for a lumbar puncture and bone marrow aspiration.

More waiting.  Presley finally went back for the spinal and BMA around 1:45.  Once she woke up in recovery, they headed back to clinic for a push of vincristine and daunorubicin.  They finally left the clinic around 4:30 and of course, the valet couldn't find PA's car. 

Dr. Redell called me around 4:45 to tell me the initial results of the bone marrow aspiration.  No leukemia cells.  We should get more results back in the next few days but it was definitely positive news.  What does it mean?  It means Presley is still in remission and the chemo is working.  We have a long way to go, but we are headed in the right direction.

Tomorrow, Presley & Peri-Ann head back to the clinic for another push of dauno.  Wednesday, she will be admitted for 4 doses of cyclophosphomide over a 48 hour period.  She has had this drug before and handled it fairly well.  The major side effect was sores in her mouth and throat.  We hope to be discharged on Friday.

Thanksgiving was last Thursday and it cracks me up that people take this one day out of the year to reflect and give thanks.  So, in that spirit, here is six things I am thankful for:

My wonderful family --  without them, I am nothing.
My lovely wife --  she has taken on the biggest job of her life and done so selflessly.
Piper's sense of humor and outlook on life.  She keeps things interesting for sure.
Presley's courage.
My job.  I couldn't work for a more caring and giving company.

Finally, you - Team Presley.  Thank you for caring enough about my daughter and family to read these updates, send words of encouragement, adopt us, and saying prayers.  It is humbling to know you care so much.  We are eternally grateful and forever in your debt.

11/18/09 - 11/25/09:  (Update from Eric)  Sorry to leave everyone hanging.....

Presley got discharged from TCH on Friday morning around 8:00am.  We were hoping to get out on Thursday evening but a lesser version of the Boydstun Hospital Law kicked in of course.  Wednesday and Thursday were very good days for Presley in TCH.  She felt well, spent most of her time roaming the halls and her MTX level was dropping to normal levels. 

To be discharged, a patient must be BELOW 0.10 MTX level. During her first MTX treatment, it took Presley two weeks to clear the MTX but only a week (which is normal) this past treatment.  We were hoping that she would clear Thursday night and Andrea (our bestest Nurse Practitioner Buddy) made sure everything was in place if she got below 0.10.  My truck repairs were finished so I left work Thursday evening and caught a ride home with Jimmy P to get it.  Then, I went to the house, picked up Piper, so she could see Presley and headed back to TCH.  They had drawn blood at 4:00 and her level was 0.14 so we were going to draw again at 8:00 to see if she could be discharged.

Piper & I met Presley on the 16th floor because they still won't siblings under 13 on the floor.  Piper & Presley hung out at Radio Lollipop for a while and then we headed down to get Presley's blood draw.  Peri-Ann & Piper headed home because they were heading out to Lubbock in the morning and still needed to pack.  Koko (our night nurse) drew Presley's lab and put a double stat on it so we could get it back ASAP and get out of there.

Boydstun Hospital Law kicked in --  It usually takes an hour or hour and a half to get labs back.  MTX is usually the last number to return so I kept checking in with Koko.  Presley was tired and drifted off to sleep.  Finally, at 10:00pm (two hours) I asked her to call down to the lab.  The lab had not even run it yet.
So, when Koko came in the room at 11:00, it didn't matter to me one way or another what the level was --  0.11.  We could draw again at 2:00am but by the time the labs got back and all discharge papers signed, we would be home at 4:30 in the morning.  I decided to wait until the 5:30 draw and just get out of there as soon as possible in the morning.  Presley was upset but drifted back to sleep quickly.

So we were home by 9:30am Friday, and Peri-Ann & Piper were off to the airport to fly to Lubbock. 

Lubbock --  Peri-Ann is an alumnus of Texas Tech and Papa coached there with Spike for 15+ years.  On Saturday, Tech was playing Oklahoma and Coach Leach could pass Spike as the winningest coach in TT history.  So, the alumni put together a reunion for Spike and all of the former coaches and players.  There were festivities prior to and after the game on Saturday.  Our friend, Allison Davis Gosney, took the opportunity to host a Team Presley drive and fundraiser to coincide with all the events.  So, Peri-Ann & Piper flew to Lubbock to represent and reminisce.

Both had a great time seeing friends, coaches and players past and Tech would up spanking Oklahoma which was probably good for PA's safety.  She had been to two previous TT games this season and they were 0-2.  If they would have lost against OU, they might have taken back her degree.

Meanwhile, back at the hacienda......
Presley's main goal for early release was so she could go to Alex Beard's belated birthday party.  Alex had postponed her party two months until Presley was healthy enough to attend.  Sweet kid.  It also just so happens, that her party was going to be the "Twilight: New Moon" opening weekend.  So Beth picked up Presley around 2:00 and I was on my own for the evening.  Hello Rico's.  Early Evening.  That's all I can say.

I picked Presley up Saturday morning from Mike & Beth's and we headed home.  PA sent an email from a friend wanting to know if we wanted Rockets tickets for Saturday night.  Presley & I were in.  Presley painted most of the day and I watched football and did some grocery shopping.  Around 4:00, Presley came downstairs and had her face painted with an "H" & "R" in Rockets colors.  She had also made a spirit stick from a paper towel roll.  I didn't want to but I had to break the news to her.  She had painted her face while looking in the mirror and had the R&H on the wrong sides of her face.  So, she washed it off and repainted.  Perfect this time.

We headed downtown and had a nice Italian dinner at Little Napoli, then headed to the game.  We picked up the tickets at will call and went in the Toyota Center.  We had to get some Rockets gear and of course, she had to get Rockets gear with "bling bling".   After we got geared up, we headed down to our seats.  2ND ROW BEHIND THE ROCKETS BENCH.  I have never been that close to the bench even when I played in high school.  We watched the shoot around, marveled at the size of the players and had a great view of the Rockets Cheerleaders.  Quit -- Presley used to cheer so we evaluated their technic - wink wink.   

During the fourth quarter, we were watching the game and the guy in the row behind us tapped Presley on the shoulder.  She was on the big screen on the scoreboard.  Beautiful Presley with her Rockets painted face on the big screen.  Perfect ending to a perfect day.

Ernest --  Thank you so much for the tix and thinking of our family.  Presley had the time of her life and we are forever grateful and in your debt.

Sunday, Presley spent the day with the Palamara's while I played golf in Jimmy P's son's hockey team golf tourney.  I was awful as usual but we had a blast.  Peri-Ann & Piper got home late and we all crashed from a very eventful and fun weekend.

Monday & Tuesday were back to normal with school, work and chores to get ready for the Thanksgiving Holiday.

I love the holidays, but this year Thanksgiving has a much more special meaning and importance.  I'll give a special Thanksgiving update tomorrow.

Thanks to everyone for all of the emails, calls, texts, fb, thoughts and prayers.  Each and everyone means so much and lifts us up.

11/17/09:  (Update from Eric)  Metamorphosis.....

As you read from Presley & Peri-Ann's update, Presley has had quite a run the past 10 days.  The real Presley is back.  Bright, positive, funny, and even a little 12 year old angst.  Of all the little victories in the past 6 months (yes, it will be 6 months on Thursday), the full day at school was the most impressive and emotional for me.  I tried not to let anyone see it, but there were inopportune moments, my emotions were at the surface and part of them leaked out.

For healthy children (Piper included), school is loved, hated, anticipated, and dreaded all in the same breath especially this time of year.  The novelty of the new class, teachers, and challenges has worn off and repetition and boredom have set in.  The holiday break gives them something to look forward to yet makes them even more anxious to get to the much needed and deserved break. 

Presley, on the other hand, probably wants school to be a part of her every day life more than anything right now.  It is a symbol of normalcy and a place of freedom and fraternity.  She has wanted to go for the past 3 months, but she finely had the physical strength and courage to act upon her desire.  She wasn't going to let her fears (or mine or PA's) stop her from having a "normal" day in her life. 

I won't deny it.  I was afraid of her being at school all day.  It had nothing to do with her physical condition or the social or emotional aspects of her visit.  My fear was centered around one thing - sick kids.  When PA & Pres told me of her plan, all I said was "you are going to bathe in Purell and keep a mask handy if there is even a sniffle in the classroom".  The first Swine Flu awareness was the reason Presley was diagnosed.  I'll be damned if I will let the Swine Flu put her in danger now.

So, she had an "awesome" day, even handling a couple of taunts from other kids about her appearance.  Yep, a kid took a verbal swipe at her head cover.  She handled it very well according to Peyton and it didn't cause Presley to bat an eyelash  (did Peri-Ann tell you they are growing back).  Already, she has learned that her appearance is temporary and wears it like a badge of honor.

Peri-Ann brought you up to speed on the admission and to the point of the "hanging of the chemo" (sounds like my high schools Christmas ceremony).  They hung a full dose of Methotrexate Monday around 8:00pm.  We were lucky to draw Rich for the night nurse.  He is the senior nurse on the floor and has been a huge source of information regarding treatment, patients rights, etc.  He is also good friends with Dr. Thompson who will be monitoring Presley's levels during the methotrexate treatment.  Plus, Rich is the only other source of testosterone on the floor.  Even when he isn't Presley's nurse, he comes and hangs out.  We have been accused of having a little "Bromance" - whatever the hell that is.

Since we were successful with the 70% dose a couple of weeks ago, the docs decided to go back to a full 5 gram dose and see if Presley's body could handle it.  They were to check levels at Hour 2 and Hour 6 and let Dr. Thompson know the levels so he could adjust if needed.  Hour 2 levels were 43.76 MTX (OK) and 0.5 Creatinine (kidney function) - good.  Dr. Thompson gave orders to check levels at Hour 4.  Hour 4 levels were 99.35 MTX (not good) and 0.4 Creatinine (good).  The huge spike concerned him so he instructed Rich to reduce dosage and increase fluids to flush the MTX and keep it at acceptable levels. 

Thank goodness that he was keeping close tabs - Presley started to get sick around 1:30 from the MTX levels.  It was only once but I had visions of the first go round in my head.  Rich checked levels at 5 am and they were back down to acceptable levels.  Dr. Thompson settled on a rate that would not endanger Presley and we were off to the races.  At 8PM tonight, they took down the bag, and we started the hydration portion of the treatment.  Her MTX level was 66.42 which is higher than the last go round's at the 24 hour mark, but still within good range.

Presley is feeling surprisingly well and actually made the rounds this afternoon and has been eating well.  We are at the mercy of the numbers now for discharge, but hopefully we will be out before the weekend.

Thanks to everyone for the calls, emails, texts, blogs, thoughts and prayers.

11/10/09 - 11/16/09:  (Update from Peri and Presley) 
(Mom)   WINNER WINNER CHIKEN DINNER........................Stephenville Yellowjackets win bi-district game, Tarleton Texans win playoff game, TCU continues being undefeated, Piper wins Cobra volleyball tourn, and Presley rides the bus and attends school ALL day on Friday.  Is there much more to say?

 

(Presley) It was a winning weekend for everyone. Pip won, Jackets won, Texans won and I also won at reaching my goal at staying at school all day.

 

(Mom) We have had a good 10 days since being discharged on the 6th.  Last week Presley did lots of catching up in school and tried to do some extra assignments, knowing that she would miss again this week.  Ms. Auld came Mon - Thurs and Ms. Youkum came Tues thru Thurs., so needless to say there was not much of anything else done those days.  We were able to meet Debbie for dinner on Thurs. night, in which, she gave her her birthday present.  Yes, all you men are going to very jealous - its a signed picture of 2 individual Dallas Cowboy Cheerleaders and a group picture.  Eric keeps threatening that he is going to take it to work so he can drool over it all day.  Good Luck Shell with him getting any work done!!
 

(Presley) I got an amazingly awesome birthday present from Debbie the other day. She gave me a signed picture of the Dallas Cowboy Cheerleaders. It is so going in the media room with all my signed footballs.

 

(Mom) Wednesday Presley and I were hanging out watching the CMA's (country music awards) for all you head bangers, when out of the blue Presley says "Mom I think I am going to go to school on Friday" so I asked her if she would like to go in the am or pm.  She replies "I'm going the whole day and I'm riding the bus".  After my inital shock, I said we would talk to dad and think about it.  Naturally, I was terrified at the thought of her being on the bus and honestly thought there was no way of her making it a whole day.  So, Friday morning came and the child who I used to have to literally pull out of the bed for school was up, dressed, and ready to go by 7:30 - the bus doesn't come until 8:15.  She asked if I would take her to Peyton's so she could get on the bus with her, off we went.  She did call once during the day for some Tylenol and the nurse was able to give her some and said she DID NOT want me to pick her up. So long story short, she got home off the bus around 4:30 and hungout with girlfriends until later that evening.  She had a wonderful day!!

(Presley) During the CMA's I said," I think I'm going to go to school on Friday." My mom said,"Okay, when do you want to go?" I told her, " I want to try to stay all day." So I couldn't believe it either, but I did. I was so proud.

 

(Mom)  As you read above, it’s pretty obvious what our weekend was consumed with - SPORTS.  Thurs. night we had text updates for the Yellowjackets big win.  Sat. morning we got up and went to support Piper in her Cobra volleyball tourn.  The girls play 3 on 3 and there were 4 total teams.  Her team wins the 1st two and then loses the 3rd one, which had to have Presley fill in because one girl had to leave.  Needless to say, tears started swelling in Piper's eyes when she saw Presley's team was beating her.  Finally, in a playoff game, Piper's team wins and she is prancing around with her winning certificate asking all the other girls, "what does yours say"?  Yes, you can say this child is just "a little" competitive.  Acts just like her dad:-)  Then later that afternoon we received text updates on the Texans - wow what a win!!  Finally on Sat. night we were able to watch the Frogs, holy cow, they looked awesome and we were able to see Andy Dalton flash the blue bracelet in warm-up.

 

(Presley) I would just have to say one thing about Piper. She is REALLY competitive!!! She won her tournament and she was asking the losing girls what theirs looked like. We watched the Frogs play on Sat.. It was so awesome to see the QB (Andy Dalton) wearing my bracelet and now SuperFrog has one of my bracelets. I always wanted to be famous, but not this way.

 

(Mom) So, back to TCH this morning to get accessed, counts, see doctor, and hopefully a room available to start chemo.  Presley and I arrived around 10:30, checked in and were sent back to the infusion room.  Once we are back, Niree comes and tells us they have 8 rooms available but also have 8 admissions scheduled (not counting if anyone comes through the ER.  They get priority).  She calls us back to get accessed, I must admit this has been one of her better accesses - quick and over with.  Now, we wait for results, she's good, so now the room drama starts.  Oh my goodness, Niree comes up to us and says your going to room 923, are you kidding? She laughs and says nope your on your way!!  So, we started hydration and were in our room by 1:30  - this is has NEVER happened before. I'm so hoping this is a good sign for entire stay.   We get to our room and find out we have one of our favorite nurses, she told us they are already making her chemo and should start around 7:30.  So, Presley started decorating her door, roamed the halls to said Hi to everyone and is now doing a craft for her room.  It’s been a good day!!

 

(Mom) We wish we could give each and everyone of you HUGE HUGS for your daily text, emails, phone calls, support but mostly your love and support.

 

(Presley) XOXOXOXO to everyone. Love ya. Thanks for all the prayers.

 
Please give a little tug to your bracelet for uneventful & successful round of chemo.

 

Much love to you all!

11/6/09 - 11/9/09:  (Update from Eric)  How much is Presley worth..........

Well, according to the officiating crew of the Mountain West Conference - 15 yards.

During the TCU vs San Diego State game on Saturday, TCU Quarterback Andy Dalton got a 15 yard Excessive Celebration penalty after he scored a first quarter TD and then pointed to his Team Presley bracelet for the cameras.  It was an extremely nice gesture from an exceptional young man and athlete.

It made Presley's day!!  Thanks Andy for showing love and support.

It also got some press and conversation on the broadcast.  http://www.star-telegram.com/sports/story/1745352.html

Presley was discharged from TCH on Friday morning after what seemed like an eternal wait for the docs to make rounds.  She is feeling well and definitely has an appetite because the first thing she wanted to do was go to lunch with Grammy and eat pizza.  She spent the afternoon and evening hanging out with Peyton and Lindsey. 

Saturday was another good day.  We went to Peyton's soccer game and then had the Schard's and Bortmess' over later that evening.  Nicole spent the night and they hung out all day Sunday making jewelry and vegging out. 

Monday brought her back to reality with some schoolwork but still a good day.  She is feeling well and her energy has been pretty good.

We have the week off as we don't go back to clinic or TCH until next Monday provided she stays fever free.  On Monday, we will start at clinic and then get admitted for the second round of methotrexate treatment in this block.  Since she did so well with it this round, they will probably raise her dose back to the 5.0 grams she took during the first go round.  I am still nervous about how her body will react, but the docs feel confident she can handle the dose and don't predict any problems.  They seem to forget about Boydstun Hospital Law - we NEVER  do.

Thanks to all for the fb messages, calls, emails, texts, thoughts and prayers.  They brought her through unscathed last week.  More will be needed next week.  A very special thanks to my mom for coming down and helping us out with Piper, Presley and everything else during her treatment.

11/5/09:  (Update from Eric)  7:15am.

Yes, Pat Sajek, I would like to buy a vowel.  I would like to buy a "K"..........

I write this as I sit in TCH 907 waiting for the team of doctors to round and sign our discharge papers.  I want to say it's a slam dunk that we will be out of here, but I have been proved wrong too many times.

Yesterday morning, the doctors made rounds and Presley's MTX was 0.18 and her creatinine was 0.4.  Dr. Ariwelling said they would check counts late in the afternoon again, give her a blood transfusion to get her red levels to normal, and would be out of here.  She would sleep in her own bed.  Yeah, well, he should have known to make such a prediction.

I left work a little early to come load up all the stuff and get Presley home.  Kami had just drawn labs and we were waiting on results to make sure the MTX level was below 0.10.  The lab was having problems and it took a little while.  Finally, she called down, got the results and wrote them down on a piece of paper and showed Presley.  0.9!!!  Woohoo!!!  Top her off with some blood and we are out of here!!!

Kami went to type the blood and Boydstun Hospital Law stikes again.  Her potassium level (K) is 2.3, well below normal.  She is worried they won't discharge us at that level.  They decide to give her the transfusion (it takes about 3 hours total) and then check again to see if the lab was off for some reason.  So, at 8:30, they do a blood draw, send it to the lab and mark it "stat".  I'm getting good at these hospital terms.  Marissa (our night nurse) brings us back the news.  2.8 - not high enough to discharge and she has called the resident to write "K" in her fluids and an oral dose.  Poor Marissa.  She seems to always draw the short straw and deliver bad news.  It has happened a couple of times before.

So, the new resident comes by, says she is writing the potassium fluids and oral dose and that we should be discharged tomorrow morning (today).  Another night in TCH!!!  I don't know who was more upset, Presley or me.  This is around 10:30pm.  So at 11:30, we are still waiting on the "K".  Marissa has called the pharmacy 10 times and they either hang up on her or tell her it is "on the way" or "in the tube".  Finally, she gets Rich to call down and check.  Someone fesses up that they don't even have the order in the system.  What the heck? 

So, we send it back down "stat" and 30 minutes later a pharmacist delivers it personally.  Marissa goes to hang it and it is the wrong concentration of potassium.  2K instead of 6K.  So we do it all again.  Finally, around 12:45am we get the right fluids and the oral dose - the wrong oral dose.  It's the liquid instead of the pill.  Marissa warns me it tastes awful and asks if we want to call the pharmacy again for the capsule.  I pour a little into a dose cup and taste it.  HOLY UNDERWEAR!!!  It is putrid, but I mix it with a box of orange juice and it just tastes like salty orange juice.  So, between the salty orange juice and the salty tears, Presley has plenty of sodium AND "K". 

She is back to sleep quickly and I finally lay down around 1:30am.

Marissa comes in at 4:00 am and draws labs.  An hour later, the "K" is at 4.1 and all we have to do is wait on the Dr. Ariwelling.

Tick, tock, tick, tock.............

11/4/09:  (Update from Eric)  Holding our breath.......

Presley has had a very good 24 hours since the methotrexate dosage ended.  Her creatinine (kidney function) has remained at 0.5 which is close to normal for her.  The methotrexate is also clearing quickly.  She was at 43.85 at hour 6 and when they finally did labs after the treatment, she was already down to 0.85 so she was never in any real danger.  The last draw before we left her tonight was 0.53. 

Don't worry, we didn't leave her there alone.  Grammy took over tonight so I could see Piper, and Peri-Ann and I could sleep in the same bed.  Like PA really wants to hear me snore....

Although the rapid drop in MTX is a good sign, we have found out the hard way, that getting below 0.10 is the difficult part.  It takes much longer between 0.20 and 0.10 than 43.85 to 0.85.  We are keeping our fingers crossed though.

She hasn't been sick but has been very tired due to the chemo and a low red blood cell count.  Her attitude is what I would describe as "between despondent and surly".  She is really only interested in sleeping and iCarly depending on the episode.  Good luck Grammy.  You will probably deserve combat pay for tonight although you deserve some attitude for trying to spoil her rotten for 12 straight years.

No predictions on when she will be discharged.  She will need a blood transfusion in the next 24-48 hours.

SIDEBAR --  We suffered another family loss today.  "Uncle Dan" Rowe passed away this morning around 7:30 am after a brief illness.  "Uncle Dan" and "Aunt Candy" are surrogate grand parents in Norman, OK.   PA used to work for Candy at Steve Owens & Associates in Norman and we spent a lot of weekends at the Rowe Retreat.  "Uncle Dan" spoiled Presley rotten - I can't sugar coat it.  It was like Grammy or Papa's house. 

Dan & Candy taught her to swim and made her the "fish" she is today.  Presley spent the evening in the bathtub with Dan during the tornado that destroyed OKC in 2000.  We spent holidays, birthdays and some normal weekdays and weekends that wound up being special with them.  We spent a wild & painful (for Dan) weekend in Lake Tahoe together as well. 

We hadn't seen "Uncle Dan" for a couple of years so we were going to meet them in Las Vegas the last weekend of May this year.  Presley was diagnosed the weekend before and we wound up cancelling.  It broke our heart to tell them, but not as much as Dan & Candy's with the news about Presley.  I hope that Dan is watching over Presley right now and whispering guidance and encouragement in her ear.

I am heartbroken at the loss of my friend.  I love you Dan and will miss you dearly.

Thanks to all for the fb, emails, texts, thoughts and prayers.  They give us strength beyond belief.

11/3/09:  (Update from Eric)  Day 2 and chemotherapy is complete.....

Presley started and finished her 24 hour High Dose Methotrexate treatment this evening around 6:00pm. Methotrexate is the drug that caused the severe reaction and near renal failure the first time it was given in June / July.  For this dose, they brought in Dr. Thompson to consult and reduced the dosage from 5 grams to 3.5 grams over a 24 hour period.  We started yesterday around 3:30 pm with a 1 hour dose and then hung the big bag. 

As I stated in a previous update, Dr. Thompson is writing a paper on methotrexate and the unpredictability of the reaction with patients and the consequent unpredictability of the second dose.  Presley had a severe reaction during the first few hours of the first treatment.  She was immediately sick and her creatinine (liver function) sky rocketed.  They had to stop the infusion and started leucovorin (rescue drug) immediately.  Even after they got her out of the woods, it took her two weeks to clear it to a safe level.  Some patients get one or the other, but very rarely do both situations happen at the same time (Boydstun Hospital Law).

So, for this treatment, Dr. Thompson ran labs at hour 2 and hour 6 to determine how her body was metabolizing the methotrexate.  At hour 2, Presley was at 0.5 creatinine and 40.34 MTX concentration.  These were safe levels.  1.2 & 65.0 are the high ends of the spectrum and at these points cause alarm.  Hour 6, Presley was still at 0.5 creatinine and 43.85 MTX concentration.  Great numbers for hour six for Presley.  During the first treatment she was at 1.0 and 50 at hour 6.  Our nurse, Caroline, called Dr. Thompson with the numbers.  We spoke and he felt confident that she would not have any problems with this dosage and was confident enough to not run any more labs until the end of the infusion.  I did not share his confidence and slept with one eye open next to Presley.

Nothing.  No problems.  Nada.  Thank goodness.  She actually got up three times during the night and didn't even need my assistance. 

Peri-Ann took over for the day shift and it was relatively uneventful.  Presley slept most of the day and only got sick a couple of times toward the end of the treatment.  She woke up for a while and did a craft from Radio Lollipop.  She tried to eat a little bit but her heart wasn't in it.  She did eat a part of a chocolate ice cream bar, go figure.   Currently, she is sleeping peacefully.  She is a little puffy because she is retaining fluids from the MTX treatment.  They are hydrating her and will start leucovorin to help her clear the MTX.  She must get below 0.10 before they will discharge us.  This is the other wild card in the MTX treatment.  There is no way to predict how quickly she will clear it. 

On another note, our friend Johnathon is getting discharged tomorrow for a week of R&R at home.  They have been in the hospital for 10.5 weeks attempting to get him in remission for AML.  He is still searching for a bone marrow donor, so please encourage people to get tested for a match.

Thanks for all of the fb, texts, emails, calls, thoughts and prayers.

10/29/09 - 11/2/09:  (Update from Eric)  Checking into Hell......
Reality bites.  Not the 90's angst movie where Ethan Hawke was a slacker and felt the world owed him something, but reality.  Kristin will make fun of me but "reality, reality".  Presley has had the best three week run of this cancer roller coaster and it all comes to a screeching halt Monday around noon.  I don't mean to sound negative but it's tough to get your daughter back and then check her into the hospital and kick her butt with chemotherapy again.

We had a great weekend.  Thursday she turned the big 12 and we went to dinner to celebrate.  She chose the Olive Garden.  So, we braved a torrential downpour and enjoyed a nice Italian dinner with Grammy.  Just the five of us.  Nothing fancy.  Food, wine, laughter.  Is there anything better?  She ordered fettucine with marinara sauce, ate the middle out of 12 breadsticks and then had molten chocolate cake for desert.  Piper had pizza and a HUGE piece of raspberry cheesecake.  I consequently banned her from deserts when I had to carry her up the stairs.  That kid is thick.

Friday morning, Presley & the gang went to Clinic to get her counts checked and get set up for admission on Sunday night.  As usual, it was a total cluster.  If it wasn't for Niree, PA & Presley would still be sitting there.  They arrived for their appointment at 8:45 am and the lobby was total chaos.  So, they checked in and headed for the sanctuary of the infusion room.  They ran into Heather & Caroline and eventually wound up sitting there until 10:15 when Peri went to the desk to check on their status.  Guess what?  They had it totally screwed up.  They had Presley as an admission for Friday and no schedule for Band-Aid junction.  I don't know how this always happens but it does.  So, they were going to put her at the back of the line for BAJ and PA & Pres would have sat there until mid-afternoon to get blood draws.

Niree saved the day and said “No way”.  She took Presley back to a room and would do the blood draws herself.  They hadn’t even taken her vitals so she had to do that as well.  Now, Presley has a reputation of being dramatic when she gets stuck so the entire clinic & 9th floor take special care and precautions when they draw blood or give an injection.  Niree took extra care on Presley’s arm and was doing fine until her scrub sleeve caught the syringe and yanked it out of her arm.  Blood everywhere and she has to stick Presley again.  She was humiliated and the rest of the staff wouldn’t even talk to her.  Veronica (whom is supposed to still be on light duty) was going to do the stick because she was so upset about the mishap.

Anyway, Niree got it done and then hunted down Dr. Redell and pulled her in for the visit.
Counts OK.  Everything is set up for Sunday admission.  Time to blow the doors off this popsicle stand.  I meet the girls & Grammy at the house @ 1:00 and we are headed to Stephenville for the Yellowjackets game against Arlington Seguin.  Load the car, drop off the dog at B&M’s and hit I-45 North.  We get about 200 yards and get right in the middle of a traffic jam.  Dead stop on I-45.  This is awesome!!  The sign said Big Wreck in Shenandoah!!  Hey, we’re in Shenandoah.  Finally started to pick up.  No wreckage we could see.  Traffic is a force of nature like tornados and hurricanes.  No way to predict and tough to stay out of the way.

For those of you who don’t know, Peri-Ann’s brother, Greg, coaches football at Stephenville High School.  It is a very nice community about 90 miles southwest of Fort Worth.  They have a great program, full of tradition and won several state championships under now Baylor head coach Art Briles.  This is Greg’s second stint at Stephenville.  He was there for a year and coached current Philadephia Eagles backup QB Kevin Kolb and Ole Miss starter Jevon Snead.  Yep, I’m name dropping and you can’t stop me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09: 

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/6/09 - 11/9/09:  11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

11/5/09: 11/4/09:  11/3/09:  10/29/09 - 11/2/09:

 

A couple of weeks ago, Stephenville beat their district rival and perennial powerhouse Everman.  Coach Joseph Gillespie gave Greg the game ball and said it was for Presley.  From that, Coach Gillispie & Coach Jeffery Thompson declared Friday night’s game against Arlington Seguin “White Out Leukemia” night for Team Presley.  They got together with Matt Copeland of Barefoot Athletics and created some T-shirts and sold them at the school and around Stephenville.  Coach Gillespie called Presley and said if she was able to come to the game, she would be a team captain and be out there for the coin toss.

We rolled into the ‘ville about an hour and a half before kickoff, met Bicki & Papa, got on our “white out” shirts and headed to the stadium.  Presley was beside herself with excitement.  She slept most of the way so she was recharged and ready for the game.  Coach Gillespie, Coach Thompson and Uncle Greg met us at the locker room.  It was a beautiful night, cold but clear and calm and Presley was a celebrity for one night. 

Peri-Ann & I have tried to figure out a way to move to Stephenville several times over the past few years.  And as I finish this story, you will understand why.  We made our way to the sideline and Presley met up with the captains of the team and walked out to the center of the field for the coin toss.  I can tell you, that I was as proud of Presley at that moment as I have ever been.  No insecurities.  No doubts.  She marched out there like she belonged there and I guess maybe she did.  It was magical and comical at the same time.  She shook hands with the captains of the other team.  They were all 6 foot plus and 200 lbs plus and she didn’t even flinch.  She walked off the field with the biggest grin I have ever seen on her face.

Peri-Ann & I looked in the stands and saw white t-shirts everywhere.  They sold well over 1000 Team Presley White Out T-Shirts.  It was an incredible show of support for a child and family most people in the stands didn’t even know.  The game started and Stephenville took it to the Arlington Seguin Cougars.  At one point, I was freezing and put on my jacket.  The PA announcer then told everyone in the stands to stand up, take off their jackets and white out leukemia for Presley.  Incredibly it worked and the jackets scored on the very next play.

At halftime, Presley went to the car to heat up and eat a hot dog.  The Yellowjackets were up 28-14.  Presley wanted to stand on the sideline with me during the second half.  While we were down there, the cheerleaders introduced themselves and took pictures with Presley.  She hung out with Uncle Greg & Rivas when the defense was on the field.  Then the class of Stephenville High School really showed itself.

It was the fourth quarter, the Yellowjackets had the game in hand with another touchdown and an offensive lineman ran off the field and headed straight toward us.  The young man introduced himself as Kody Travis, shook mine & PA’s hand and then told Presley it was an honor to meet her and that she is in his prayers every night.  I continue to be amazed at the young people I have met in the past few weeks.  They are mature, considerate and light years ahead of me when I was their age.  (If we can convince them to vote republican, there is a future for this country).

After the game, Presley was a celebrity.   Coaches and players asked to have their picture taken with her.  She was gracious, humble and loving every minute of the attention.  We learned that one of the senior defensive linemen, T.R. Varnado, even bleached his hair white for Team Presley White Out Leukemia Night.  It was quite the topic of conversation around the school and town.
Even on the ride home, we were listening to the post game show on the radio.  Kids were calling in, commenting about the game, T.R.’s new hairdo and then would give a shout out to Presley and wish her well.  Totally amazing!

Coach Gillespie, Coach Thompson and Matt Copeland,
Thank you for going the extra mile to create one of the best nights of a young girls life.  We are honored to be a part of Yellowjacket football, your staff, families and the community of Stephenville, TX.  We can never repay you for your kindness and generosity.  We are Yellowjackets for Life!

Saturday was a tremendous Halloween.  It was a great day of watching football, hanging with Papa, Bicki, Meredith, Grammy, Uncle Greg, Debbie, Rivas, Coach Butler, Kathy & Ty.  Piper & Presley decorated Herbie (Papa’s golfcart) with orange and black streamers and went trick or treating.  Piper was a very cute and sweet bunny while Presley let her glamorous side show again and was a Diva.  Her costume was complete with incredibly long fake, glittery eye lashes and long, black wig.  Both of the girls were beautiful and got lots of candy.  Presley got tired quickly and was ready to go back to the house.  Selfless as ever, she kept going so Piper could enjoy Halloween as much as possible.
Sunday came way too quickly and we loaded up and headed back to Houston.  We got the call that our room was ready around 2:00pm while we were driving through Huntsville.  So, when we got to the house, we repacked for our stay at the Texas Children’s Hilton for the next few days. 

It took everything I had to put Presley in the car and drive her to the hospital.  When you are on a high like the past few weeks, it is so difficult to mentally prepare to subject your daughter to chemotherapy again.  Presley, on the other hand, was very matter of fact about it.  She didn’t object, fight, cry or ask to not go.  She even had to prod me to get in the car.   She said we don’t want to take any chances of losing our room and delaying treatment.  She is 12 years old and much wiser and mature than this 40 year old man.

Today, we had a lumbar puncture (spinal tap) and then started methotrexate around 3:30 pm.  So far, so good.

A couple of updates ago, I promised you an update on our buddy Blake.  This is the high point of the update.  Blake completed his chemotherapy treatment for Ewing’s Sarcoma and has been declared “No Evidence of Disease” – CANCER FREE!!!!!  Blake will continue checkups and scans but he has kicked cancer’s butt.

We are so happy for Blake, Jim, Deanna & Toni.  I enjoyed reading Jim & Deanna’s updates regarding the victory and read one from Jim aloud to Presley while we were hanging at Subway a couple of weeks ago.  I was so overwhelmed with joy for them, I lost my composure a couple of times.  Presley seemed to understand and just let me take a moment.   I know she looks forward to her own update of the same nature. 

Selfishly, I will miss seeing them on the 9th floor and in clinic.  Jim & Deanna gave us so much support, advice, love and wisdom from the very beginning of Presley’s diagnosis.  We can never repay them for all they have done.  Even through times like these, we are fortunate to meet great people in this world.  I thank God for giving us the gift of their friendship.

Unfortunately, the line between victory & loss is very, very thin.  We lost a brave warrior in the fight against this awful disease this week.  Natalia Lopez left this life after a brave battle with AML.  She had been fighting the good fight and had relapsed August  29th after a bone marrow transplant from her mother.  My heart goes out to Dan & Melissa and the Lopez family.  I cannot imagine their grief and to be quite blunt, I do not even want to attempt to fathom their loss.

Natalia was a Rock Star on the 9th floor.  She was loved by all of the staff and fellow patients alike.  We were fortunate enough to meet and talk with her only a couple of times although we spoke to her parents regularly.  Although Presley and Natalia didn’t spend any time together, Presley was acutely aware of her condition.  She was always asking Peri for updates.  It made it that much harder to break the news of her passing to Presley.

The evening of Natalia’s passing, we sat Presley down and told her the news.  She knew that Natalia had been in ICU and had been on a ventilator to help her breathe.  She then asked a very peculiar question:  “Did they have to put Natalia to sleep?” 

We explained Natalia’s condition again, but something about the question bothered Peri-Ann and I.  The next day, PA & I talked about it.  We realized that the only experience with death that Presley has had was her dog Tigger.  Tigger had a stroke right after we moved to Houston and was never the same dog.  In fact, he was in such poor shape at one point after we got him out of the vet, that I told Pres that if he didn’t improve in 24 hours, I was going to put him to sleep.

The more I thought of her question and the more I thought of her experience, some things started to make sense.  No matter how bad she felt, she fought going to the hospital.  I thought it was just her not wanting to disrupt our time at home or just not wanting to be in the hospital.  But it continued to gnaw at me, so I talked to her about it again.  I asked her if she thought that if she got sick, that we would have to “put her to sleep like Tigger”.  I assured her that we would fight and fight and fight no matter how sick she got. 

We had a long conversation about Natalia as well.  She said she wished she could have spent some time with her and gotten to know her.  I believe she saw Natalia as strength and courage and wants to be like her in those respects.  Natalia’s T-Shirts said it all about her – “Natalia’s Crew – Being Bald is Beautiful, but fighting leukemia is Brave.

No one ever wants to have conversations like this with their children.  I can tell you that I am proud of my daughter’s maturity and ability to handle adversity.  Although, she is still very much a child, she has also grown up so much in the past five months.  I wish she still had her innocence.
Thanks to everyone for the calls, emails, thoughts and prayers.  They truly lift us up.

10/19/09 - 10/28/09:  (Update from Eric)   Sorry for the long delay in updates.  It's been an
insane 10 days and all of them GOOD.  The last update was for the blood drive last Sunday afternoon.

We had an INCREDIBLE turnout at the Blood Drive at Xtreme Volleyball.  It
started at 11:00am and went to 4:30.  The Gulf Coast team never expected
the turnout and we kept them busy until the very last minute.  In fact,
they filled some of our open spots a couple of days before the drive with some
of their Commit For Life regular donors.  Guess What?  We didn't need
them.

We had 37 people donate their blood and 8 counted double as they gave platelets
and double red blood cells for a total of 45.  AMAZING!!  There were
7 or 8 others that tried and didn't qualify for various reasons or had to be
postponed.  According to Gulf Coast, those 37 people will have an impact
for 111 people needing blood or blood products.  That's right - 111. 

Thank you to:
Mike & Beth Beard - for donating and Beth for setting up the whole thing!!
Kris & Mark Beard - It's ok if you went to the wrong place at first.
Thanks for showing up!!
Joan Landes & Steve.  Thanks for sharing your survivor story!!
Kambra Drummond - Thanks for Team Presley Bling

Dennis & Kathy Canciulli / Coach Kristen Zelaya (quit drinking so much
tea), Coach Royce Molitor, Ray Gonzalez, Becky & Brantley Harris, Cliff
Brown,
Candy Johnson, Jill Frazier, Pam Crabb, Amy McFall, J.W. & Lauren Turner,
Tammy Soza (I'm glad you didn't pass out), Christina Bowser, Duane McCoy, Dino
Pinton, Brenda Carruth, Amanda Yeager, Paul Primavera (his blood was burnt
orange for some reason), Scott & Mei-Leng Holland and David Testerman.
It's no wonder Xtreme Volleyball is such a successful club.  The girls are
a direct reflection of the character of their coaches and parents.  I am
so proud that my family is a part of Xtreme.

Thanks to my peop's for taking time out of their Sunday to show up and donate
the gift of life:
Scott Hagy -  you are good people.  Thanks to Jim & Blythe for
introducing us. 
Sean Charles -  Love your family, even though Kristin chickened out and
your kids got me in trouble with the nurse!
Kevin & Amy O'Bryant -- Thanks for coming after your swim meet.  I
know you were worn out.
Jarrett Hubert - Gave double & then caught a plane to Vancouver for
work.  Did you have the wine like I suggested?
Morgan & Pam Gottsponer --  Cajun blood is good blood.
Wanda Waltrip -  She went and gave during the week after finding out on
Monday.  You rock, girl.
Finally, Matty B.  It's a wonder you still qualified after eating that
size 8 Florsheim shoe!!!  Love ya man.

Also, a special thank you to Heather B.  During one of our PACU visits at
TCH, the clinic PACU recovery was closing and we still didn't have a bed so
they moved us to the hospital PACU to wait for an opening.  Heather's son
was in PACU recovery in the bed beside us.  She & PA started talking
and Peri wound up telling her Presley's story.  Heather sent Presley a
note on the website later that week and has stayed in contact.  She has
four children of her own and still took the time to remember Presley and donate
her time & blood.  She just proves there are still good people in this
world you haven't met yet! We are proud to call her a friend.

Presley came up and hung out for a few hours and then we enjoyed a nice dinner
with the O'Bryants.  Good Times.
However, as usual, I was unprepared to be standing in the sun for 5 1/2 hours
and at the end of the day, there was a huge 20 pound tomato on top of my
shoulders.  It wasn't pretty.

The week following the blood drive was good and relatively uneventful.
Presley went to TCH to get her counts checked on Tuesday.  Her ANC was
still a "big fat 20" and her other counts were low as well but no
transfusion was needed.  She has maintained her weight and her albumin
& creatinine levels were normal.  They felt her counts would start to
improve, but we still had to be careful.

Presley's home bound teacher, Ms. Yoacum, came by for normal lessons.
Presley also went up to the school on Thursday and met with Ms. Wofford to go
over her math homework.  Ms. Wofford helped her straighten things out and
Presley really enjoyed the time at school and with her.

Friday, Presley & Peri returned to TCH to check counts again.
Although, there was a short wait, Presley made her counts again and her ANC
improved to 2570.  Low but much, much better.  Platelets were good
and Red was good as well.  Although she got to see Caroline & Kenna,
she wanted to get the heck out of Dodge ASAP.  The schools had early release
so she spent the afternoon with Peyton and Lindsey roaming the
neighborhood.  We also had a retro "normal" Friday night by
having the dinner at the Schards.

Saturday, PA & I were able to have a little adult time and went to the
Texas Tech - Texas A&M game.  We traveled in style with Mike Beard, a
couple of other Aggies and a couple of Tech fans.  David S. thanks for
hooking us up.  So far this year, we are 0-2 at Tech games.  I'm
pretty sure we will be banned from any further contests.  We got to see a
lot of old friends and enjoyed the game immensely.

Presley & Piper hung out at Camp Beard and got to hang with Alicia and
Jordan Thomas as well.  Jordan is Presley's BFF from Fort Worth and it was
like they haven't been apart for the past 22 months.  They took Alicia out
to dinner for her 5th anniversary of her 39th birthday.  (I know this will
be edited).

Sunday was an another INCREDIBLE day of love and support.  Beth Beard
signed up Team Presley for the Leukemia and Lymphoma Society's Light the Night
Walk.  It is a night of support for people currently fighting battles
against leukemia & lymphoma, a night of remembrance of those lost, and a
night of hope for the future with a cure.  Beth Beard signed Team Presley
a couple of months ago and Team Presley responded in Magnificent fashion. 

A week or so before the walk, the LLS notified Beth that Team Presley was one
of the larger teams and had raised quite a bit of money already.  So,
Peri-Ann & I decided to hold a little thank you Tailgate party at 3B's
prior to the walk.  That's right, we even tailgate before a leukemia walk.
Thank you to everyone who showed up to 3B's and especially to Randy, DJ, Pam,
Bill & Madison for doing such a great job and putting up with our
shanigans. 

It was wonderful to see everyone show up, bring their kids and hang out with
us.  Next year, we will hold it at a park or at least a place where it is
safer for children to play!!!  No casualties, but I was a little nervous
from time to time.

The turnout at 3B's was amazing but the turnout tripled for Team Presley at the
Walk.  We were represented by Tom Cox Intermediate, Xtreme Volleyball, and
other special friends.  The walk and event was crazy, fun, and very
emotional for me.  I can't tell you how many times I almost started crying
looking at all the support and love thrown Presley's way.  Presley had a
blast and, in my humble opinion, was a gracious and honorable host.  She
ran out of gas before the walk but Jane Stoneking was there with the perfect
vehicle to help her make the course. 

Beyond that, I am again amazed at the support and generosity of our
friends.  The Light the Night Walk raised $300,000 for the Leukemia &
Lymphoma Society.  Team Presley raised $8,700 of that total and was one of
the top teams in 2009.  We can't thank everyone enough. 

Although I thanked Beth Beard at 3B's, she deserves another huge thank you for
making this happen.  Beth & her sister Alicia took us into their
family long before this ordeal began.  We were constantly part of their
family events in Fort Worth and Houston.  In fact, they had us over for
their family Easter gathering at Bob & Noreen's house the first spring we
moved down to Houston.  Thank you, thank you, thank you.

Monday was back to normal for everyone except me.  I got up at 3:45 am,
drove to Hobby and caught a plane to Amarillo.  I got off the plane and it
was 41 degrees and the wind was blowing 25 mph.  Hello Panhandle!!
Mom picked me up and we headed to Boise City for the day.

A couple of months ago, an old high school friend called me and told me her
daughter was working toward the Gold Award for Girl Scouts.  The Gold
Award is the equivalent of Eagle Scout for Boy Scouts so it is difficult to
achieve and prestigious when achieved.  Kayla was required to do a community
service project and they asked if they could hold a bone marrow drive for
Presley.  I was touched and honored and said I would help them in any way
I could.  So, I was headed back to my home town to speak in front of the
school and community about Presley.

Kayla Mizer is a sophomore at Boise City High School and soon to be a Gold
Award Girl Scout.  Although I was impressed with her over the phone and
email, my respect for her doubled after meeting her in person.  I don't
remember what I was doing my sophomore year, but I darn sure wasn't spending
100+ hours on a community service project.  Sometimes I hear people talk
bad about the younger generation, but if you meet Kayla, you will regain your
hope for the future.  We gave our presentation together, and then signed
up 20+ people for the Bone Marrow drive.  I say we....  I shot the
bull with people I hadn't seen in years and she signed up 20+ people.  She
is also putting up the booth at the football game Friday night & the
community holiday bazaar Saturday.   Her goal is 200 people out of a
community of 1200.  That's pretty good penetration in marketing terms.

Kim & Billy,
You should be proud of the daughter you are raising.  She has a maturity
and presence not found in girls much older.  I am honored she chose
Presley and honored to work with her.  It is a direct reflection on you
and you should take pride.

Kayla,
Thank you for everything you have done and are doing.  Some day soon, you
& Presley will meet and hang out.  It will be a great day.

Mom took me back to Amarillo (2 hour drive) and I got back on a plane and home
around 10:00pm.  A long, exhausting, but totally rewarding day.

Thanks again to everyone that gave blood, money, love, & support.
It's been a great 3 week run and I hope it continues.

Presley is excited about her birthday on Thursday, going to Uncle Greg's game
on Friday, and Halloween on Saturday. 

Thanks for every hug, kiss, call, email, text, thought & prayer. 

10/14/09 - 10/18/09:  (Update from Eric)  When you're on a streak, you don't talk about the streak.... - Crash Davis - Bull Durham

Presley had a good week and an even better weekend. 

Wednesday and Thursday were good, uneventful days.  She had Ms. Yoacum, her homebound teacher come each day and they got caught up on schoolwork.  Even her reading teacher, Ms. Nodarse, gave her an assignment and she began work on it.  Presley was feeling well, her strength is ok, and it shows in her attitude.

Friday, Presley & I loaded up and headed to TCH to check her counts and meet with Dr. Redell.

Peri-Ann and "PJ Funnybunny Piper" went to school for the book character parade at Birnham Woods Elementary.  Piper had to dress up as a book character and she chose PJ Funnybunny.  Grammy had made her a bunny suit for Halloween, so she took full advantage and wore it to school for the book character parade.  She was a cute bunny that shakes her tail a little more than what Daddy Funnybunny is comfortable with, but I will let it slide in 1st grade.  Once she gets to 12 years old, I will put the clamp down on it and all will be good.  Yes, as a matter of fact, the sky is pink & purple in my world when I wake up.

So, Presley & I went to clinic for our 7:45am appointment.  Presley & I had also decided to do a "Day in the Clinic" video with her camera. (Thank you C-Store Team again).  We want people to see the clinic, the different stations and steps, and a "normal" day in her clinical life. 

When we arrived, we were the second or third patients in the clinic, yet it still took them 20 minutes to get us a pager just so they could buzz us to Band-Aid junction.  First of all, it is always about 50 degrees in the clinic waiting and infusion rooms and Friday was no different.  So after we got our pager, we walked across the elevator bank and hung out in the hall where it is 10 degrees warmer.  This is the reason Grammy's blanket program is so popular in TCH.
Anyway, as always, there was some confusion:
1)  Presley requested Vernonica to do her blood draw (they asked if she had a preference).  After a few minutes, they told us that Veronica doesn't do port access.  We explained that we didn't want to access the port unless she needed a transfusion and just do a regular blood draw.
2)  Then we found out that Veronica is on light duty because she has tendonitis in her hand.  Not good for a phlebotomist. 

So we went to Band-Aid Junction and got Cheryl who is always so good to Presley.  Then we headed to the infusion room to wait to see Dr. Redell.  It didn't take very long and we were in the Pod with Dr. Redell.  Her blood counts were good and bad:
Hemoglobin (Red) - 10.0  Low but not transfusion level
Platelets - 13 --  Normal is 150.  She needs a transfusion - DRAT!!!  (that's old school).
WBC --  0.22 (Lowest Normal level is 5.00)
ANC --  A "Big Fat 20" as Dr. Redell put it.  Lowest normal level is 1500.  Yep, she has NO resistance to infection.

Another wrinkle is they are "overbooked" for chemo & transfusions for the clinic today.  Dr. Redell says it may be a few hours before they work us in for platelets, but she had already put in the order.  She checked Presley out and was happy with her Creatinine and Albumin levels (kidney & liver function).
We discussed the upcoming round of chemo and she told us that she had put off the next round until November 2nd.  Since it will be methotrexate (the bad drug), they are pulling in another physician to consult during this round.  Dr. Thompson is very respected within the TCH Oncology team and around the country.  He is also a pharmocologist which puts his IQ somewhere in the neighborhood of my weight - don't even ask.

From there, Presley and I had some time to kill, so we decided to go across the bridge to the 9th floor and see our little friend Grant.  We arrived at the desk and started to sign in to visit.  The lady recognized Presley and asked if she was being admitted.  I explained we were waiting on them to call us for a transfusion in the clinic and we wanted to see Grant & Melanie.  She asked Presley how old she was - What? - and Presley told her 12 in a couple of weeks.  The clerk at the deck said she had to be 13 and then called the charge nurse (whom I didn't know) and ask her. 
THEY WOULDN'T LET US ON THE FLOOR TO VISIT.
Ok, I get they are trying to avoid flu and infection during this time but we LIVE on that floor almost 50% of the time for the past 5 months.  Are you kidding me?  If it would have been a different charge nurse, I would have pressed the issue, but instead we were turned away.

So, we head down and decide to walk across the street for a chocolate chip muffin at Starbucks.  On the way, we pass a Subway and Presley decides she wants a sandwich.  Hello, it is 10:05 in the morning, but there is no way I am going to deny her eating at anytime right now.  So, at 10:15, we are sitting in Subway and she is enjoying a ham & turkey sandwich while I read an update about our buddy Blake.  (will give update on Blake tomorrow - it's ALL good!).  She finishes her sandwich and we head back to TCH.  On the way, they call us and tell us they are ready to transfuse - Rock On - we are getting out of here early.

We get back to the 14th floor and get a nice new nurse.  They do a good job accessing Presley and we start the platelets transfusion.  At the same time, Peri-Ann makes it down to TCH and we meet her in the infusion room.  It is then that Dr. Redell and Dr. Thompson come discuss the next round of treatment with all of us.

Long Story Short, here's the plan:
Normally, Presley would go to clinic, then PACU for a bone marrow aspiration and spinal tap, and then be admitted and hang chemo sometime later that night.  Dr. Thompson wants to pull creatinine and blood levels one hour and 5-6 hours into the treatment so it works out better if they start the chemo in the morning. (I accused him of liking sleep & he didn't deny it).  So, we are being admitted, Sunday evening, November 1st to get the room, get the pharmacy started on the methotrexate and be ready to hang it first thing Monday morning, November 2nd.  They said we could just hang out and watch movies or whatever.  I said that it would be just like the Hilton, except the food sucks, the room isn't as nice, the bed isn't as comfortable, and the price is about 500 times a normal Hilton rate.  Plus I don't get any Hilton points for TCH!!!!   They didn't deny that either.

Sorry for the tangent.  Once they pull the levels at hour 1 and 5, they will project what the levels will be at hour 12, 18, & 24 and determine a course of action from there.  Dr. Thompson is a self-proclaimed "math nerd" and told us he is working on a paper about methotrexate right now.  The funny thing about this drug is there is such a different reaction leukemia patients.  There are two issues with methotrexate treatment:  1)  the toxicity to the kidneys & 2) the time it takes the body to clear the drug.

Dr. Thompson said that there is no way to predict how the patient will handle the toxicity (Presley's was severe) or the ability to clear the drug (Presley took 2 weeks).  The wild thing about the drug is the second & third times the drug is administered to the patient, the difference in reaction from the 1st time can be as random as patient reactions.  There is no way to predict how Presley will handle treatment number two.  He said it is just as likely that she will have no issues and clear it in 24 hours as she is to have another severe reaction.  In fact, that is the subject of a paper he & other oncologists are writing.

Anyway, I have a better comfort level with him & Dr. Redell monitoring the situation hour by hour this time.  Dr. Thompson is a quirkly little guy.  5'7" of intelligence and passion.  He has a wonderful sense of humor and got Presley with a little joke.  They told her we would stop the Gleevec during the methotrexate treatment this time and that it would help immensely if she stopped talking to boys and texting on the cell phone as well.  Presley's jaw hit the floor.  It was comic to say the least.  And, like most insanely brilliant people, he has a couple of quirks.  The one that got Peri-Ann & I was that his eye glasses were FILTHY.  I do not know how the hell he could even see us.  We both commented that we were going to get him some microfiber and glass cleaner when we get admitted.

So, Presley & Peri-Ann were able to shake away and get home around 2pm on Friday.  We had several invites for dinner, and Presley was invited to stay with some friends, but with her ANC so low, we decided to lock her down for the evening.  She got some rest and it was a good thing, because, Saturday, Presley had one of the best days in her ALL life.

Last week, I purchased tickets to the Toyota Texas Bass Classic fishing tournament.  Slow down, I haven't gone total redneck.  Pat Green was headlining a show after the weigh-in at Lake Conroe Saturday evening.  It was an "outdoor" venue - it was a huge field so I wasn't really worried about Presley's ANC in that environment.  We headed north with the Bortmess family about 3pm on Saturday afternoon.  We had no idea where this was, but we headed out 105, across the lake, and found it.  It literally is a field that has been cleared and a small tent city with a huge stage erected.

There were lots of booths with food, drink and of course bass fishing equipment.  Boats, mowers, sunglasses, jigs, lures, you name it.  I have only fished one time in the last 15 years so I found the libation booth immediately.  We moved down to the stage area as they were weighing in the last angler's catches.  They would bring in the anglers in a Toyota pickup and then interview them about their day on the lake.  It was like a NASCAR interview.  They were thanking sponsors and discussing, in detail, docks and logs they fished - successfully & unsuccessfully.  Holy Cow.  I've never fished without a beer in my hand, so I don't know how these guys do it without meeting my friend Betty Ford.

Anyway, we found a place to sit down and have a decent angle at the stage.  Presley & Nicole were restless and said they couldn't see sitting down, so they decided to make their way closer to the stage.  Pat Green came out, kicked off the first number and holy cow, he was wearing the Team Presley bracelet that Billy Joe Tolliver gave him a couple of weeks ago.  Right hand, picking the guitar, plain as day.

I don't mind telling you, that I got a little emotional.  Not because Pat was wearing her bracelet either.  It was much more powerful than that.  I realized at that point, that a simple effort and gesture on Billy Joe's part just had a HUGE impact on Presley.  I've met Billy Joe Tolliver one time in my life and my wife has
probably spoken to him twice in the time we have been married.  Yet, he
loves my father-in-law and in turn loves his family, all the way down
to Presley.  However, Billy Joe thought enough about Presley to take time out of his busy schedule to track down someone and give him a bracelet.  It doesn't sound like much, but how many of us truly do those little things for people everyday.

Presley, Nicole & Brittany were right down front for the entire concert.  They were having a ball.  Peri-Ann & Jeannie made their way down to the front to join them and they wrote a note to Pat from Presley and handed it to the security guard.  The note made it to Pat and after the encore - "Wave on Wave", the security guard came and took Presley, Piper & Peri-Ann backstage to meet Pat.  Pres has met him before but this was something entirely different.  She was star struck.  Pat was being pulled to get to his meet & greet, but he took the time to take pictures and told Presley "I will not take this bracelet off until I hear you are cured".  It was a magical evening.

So we made it back to the house late Saturday evening, full of wonder, music & margaritas (not Presley of course - she's a beer drinker.  JK).

Today was the Team Presley Commit for Life blood drive @ Xtreme Volleyball.  Beth Beard (our everyday angel) set this up with the Gulf Coast Regional Blood Bank.  As always, she did an incredible job and we had tremendous turnout.  Her husband, Mike and I were the first to donate followed by Ray Gonzalez owner of Xtreme.  Ray has been so compassionate and supportive of Presley and we can never thank him enough for keeping Presley top of mind at Xtreme.  I cannot wait until the day Presley is back full strength at Xtreme and Ray is pushing her to the limit.

It was a good day and I will go into much more detail in tomorrow's update.

A special thanks to Michael & Carrie Winter for adopting us this week.  In another update, I thanked Michael for the 3000 pounds of smoked meat and he and his family continued to give this week.  He brought me some of his father-in-law's famous grill seasoning and jelly on Wednesday and then brought a basket of treats for Presley on Friday.  We have snickerdoodles as big as my head for the next couple of weeks.  Presley is in heaven.

Thanks to all who showed up for the blood drive (I will thank everyone individually tomorrow).  Another huge thanks to those for the emails, texts, calls, FB, thoughts & prayers.  We love and appreciate you all.

10/12/09 - 10/13/09:  (Update from Eric)    So far so good......

Presley is still at home and feeling quite well.  Monday, she & Peri-Ann went to the clinic to check her counts.  It was total mayhem at the clinic and they didn't even get to Band-Aid junction until an hour after their appointment.  The goods news is Presley got to see her friends Grant & Blake.

When they finally got to Band-Aid junction, PA & Pres informed them that it was Day 9 on the needle she had accessed.  10 days is the max for a needle before they
deaccess, clean the area and reaccess and dress.  Since there was a chance of getting off TPN, they decided to wait until she met with Cara.  So, they weighed and took vital signs.  Presley is at 57 pounds now.  She has fluctuated between 57 & 60 since putting her on TPN
depending on if she is on fluids.  Although 57 pounds doesn't sound like much, it is considerably better than the 50 she was at when admitted after Labor Day.

After that, they waited another two hours before they even drew her labs.  They had to take her to a triage room because it was so busy.  So, three hours in and they still must wait another hour to see Cara and see counts.  Finally, they get called back to a room to see Cara.  Guess what?  Boydstun Hospital Law.  They can't find her blood for the
labs.  So another round of waiting and confusion and screw up.

They finally found it, ran the labs and they came back surprisingly well.

Hemoglobin - 9.3  Low, but they transfuse below 8.0
WBC - 0.95  very low
Platelets  - 101; low but transfuse at 20
ANC - 850;  low, but Cara was surprised at how high it actually was.

The Albumin level is the big number that would determine whether or not she could get off TPN.  Albumin is a way to monitor kidney and liver function.  Her level after Labor Day when she was admitted was 1.7  where 3.7 - 5.5 is considered normal.  Her test came back @ 3.2!!!!  Not quite within the normal range but Dr. Redell said anything over 3.0 and we
could get off TPN as long as she kept eating well.

So Presley got deaccessed, set an appointment for Friday to check counts again and
schedule a transfusion.  They are anticipating she will need one. Another
little tidbit, is they are so overbooked for Friday, that even if she needs blood, they might not have capacity to give the transfusion in clinic.  Where we go from there is yet to be determined.

So Monday night was a good night.  We chowed down on Michael Winter BBQ and just hung out.  Presley informed me as I tucked her into bed that she wanted steak for dinner - if she ate as much as she thought about food, she would be back to 70 pounds in no time.

Tuesday was back to normal as Piper went back to school, I was back in the office and
Presley's Home Bound Teacher came by for a lesson.

She is still feeling well and her spirits are good. 

We finally got our first batch of Team Presley T-Shirts today as well.  Presley wanted to make a statement and that she did with the design!!

A HUGE THANK YOU TO RONNIE FLOWERS AND ATHLETIC SUPPLY FOR THE T-SHIRTS AND TURNING THEM AROUND SO QUICKLY!!!

We will be bringing them to the Light the Night Walk for all of Team Presley walking with us on Sunday, October 25th.  We are also trying to coordinate a get together prior to the walk with food, beverage and fellowship.  Will keep you posted. Thanks
to all who will join us in the walk and those who have once again
donated their money and time.  We are humbled by your kindness, spirit
and generosity. 

Finally, we are having a Team Presley Blood Drive at Xtreme Volleyball Gym on Sunday, October 18th.  The Drive will begin at 11:00 am and run until 5:00 pm.  There are still spots available from 2:00 - 4:30 so if you have blood and time to spare......

Thanks
to Kristin Eberhard for adopting us last week.  The girls loved the
bags and jewelry kits.  I, on the other hand, will be cussing you later
when I step on beads for a week after a jewelry session.  Just
kidding.  I really appreciate it.

Thanks to all for the calls, emails, texts, FB, thoughts & prayers.  We cherish each and every one.

10/6/09 - 10/11/09:   (Update from Eric)  I see trees of green, red roses too.........

Presley was discharged from TCH on Wednesday afternoon following her ASP injection and fluids.  It was efficient, seemless and I totally screwed it up.  When we have planned hospital stays, PA & I try to work it so we only have one vehicle and that vehicle doesn't stay in the parking garage very long.  TCH has changed their parking program in the past couple of weeks and it's amazing how expensive it is.  So, we drove to the hospital on Saturday and used one car for the entire stay.  PA would take the car home at night and I would drive it to work @ Pennzoil Tower in the morning.  Good plan.  We would have to pay $5.00 for the limited time the car was in the garage.

Well, when we learned that Pres was going to be discharged on Wednesday afternoon, I decided to take the train from TCH to the office.  Houston has a light rail system they put in for the Super Bowl a few years ago and it conveniently runs from Reliant Stadium to Downtown Houston.  It costs $1.50 for a one way ride from the medical center to a station 1.5 blocks from my office.  Perfect.  So, I help load the car, and begin my ride on the rails.  20 minutes later, I am downtown at my office and into my work groove.  Then, PA calls me around 1:30 and asks "Do you have the keys to the car?"  DAMN.

Out of habit, I put the keys in my pocket, ride the rails downtown and put the keys in my desk drawer (out of habit).  So, I have to leave work, (catching a ride from an angel Angela Kirby) and head BACK to TCH to take the keys to PA & Presley.  So, we all head home together.

As we have documented, Presley has not had AraC before so we have no idea what to expect.  Honestly, we would take this every day of our treatment if we have this type of reaction. 

Presley feels great and is almost back to the kid we all know and love.

Wednesday night she wanted to go out to eat and her counts were still very good.  We go to Rico's with Uncle Muff and have a great time.  Uncle Muff had a flight late Wednesday but we all enjoyed his company and wicked sense of humor.  We did have one little scare because Peyton was diagnosed with swine flu and Piper had been over there after school all week long.  Our friends, Jerry & Tammy stepped up and took care of Piper when she got off the bus for a couple of days.  We greatly appreciate their help trying to avoid the flu at all costs. 

Thursday, Presley had her home bound teacher and plenty of lessons to catch up on.  She had a great day and her energy level was still high.

We actually had a NORMAL Friday night this week as we all went to the Schard's and Madora cooked dinner.  Presley got her favorite Schard dish (goulash) and some fancy peas that Mr. Brad likes.  He can't just have normal peas, they have to be some sort of "baby" something or other peas.  I make fun of it, but Presley & Piper loved it, so I can't complain.

Saturday was the start of a GREAT weekend for Team Presley:
1)  She hasn't felt this well in months
2)  We went to the Xtreme Gym to support Piper
3)  We saw some great music and had great food.

As I said, we would take AraC treatment any day over some of the other drugs we have had in the past 5 months.  She feels great and is as close to the old "Presley" as we have seen.  So, Saturday morning, we all go to Xtreme to watch Piper play in her first tournament.  Piper is participating in a "little league" volleyball program and practices every Friday night.  Xtreme decides to have an intrasquad tournament and Piper is stoked.  It winds up being a 3 on 3 game where they use the fundamentals learned in practice.

Piper's team is good even with a lame duck third player.  They win all three games handily but when they announce winners, they say it is a 3 way tie - the teams are 2-1.  Piper's team gets beat in the first round of the playoff.  I am watching her on the sideline and I can tell you she is not a happy camper.
After they finally decide a winner, Piper gets her "participant" certificate and candy and heads over to me - bawling her eyes out.  She says "We won all 3 games and they said we only won two".  PA, Pres & I try to console her and say she played well.  PA said it's ok and shows Piper the "participant" certificate.  Piper takes it and crumples it up and throws it down.  I love this kid.

After the tournament, we went to the Conroe Cajun Catfish Festival.  It is in downtown Conroe and has music, food and booths with arts and crafts.  We go with the Schards and the Bortmess' meet us there as well.  We have a good time walking around, checking out the booths and having some food and drink.  Wade Bowen is playing and we get down next to the rail for most of the show.  It worries me when Presley says "I like the music, but he is so cute".  OK.

After the show, Wade is signing autographs and merchandise.  Presley, Nicole and Peyton get shirts and he signs them all.  Presley also gives him a bracelet and gets a picture with him.  Wade is very kind and gives her a kiss and tells her that he will pray for her.  Pretty awesome.

Speaking of awesome, there are some people in the past few days that have gone above and beyond. 
1)  Michael Winter -- brought us about 3,000 pounds of brisket, ribs and sausage today.  Great stuff.  We chowed down.
2)  Erin Bailey Carter --  She went to a Walt Wilkins concert and requested and videoed a song that has meant so much to me in the past 5 months.
3)  Drew Myers-  Drew was football operations at TCU when Papa was coaching.  He created a video for Presley that shows him all over the world with the bracelet and gives life lessons --  Please view on YouTube: http://www.youtube.com/watch?v=Db9FEyvmK9A
4)  Billy Joe Toliver --  A)  Wore his Team Presley bracelet on TV at the Reno Celebrity Pro-Am tourney.  B)  Also, cornered Pat Green in Shreveport, gave him a bracelet and got a pic.
5)  JD Walker -- Rallied his PAL's @ Allen High School to raise money and give tremendous encouragement and support.  The video was awesome JD!!

Sunday was another great day for Presley.  I dropped off Peyton, Nicole and Pres at Main Event to run amock while I go watch the Broncos versus the Patriots.  (Broncos 5-0 BABY!!!!  -  Still can't believe it).   The girls had a great time playing laser tag, bowling and video games.  It was almost like having a normal 12 year old.

Finally, Presley goes back to clinic tomorrow to get counts checked and re-accessed.  We don't anticipate any problems and are looking forward to another great week. 

Thanks to everyone for the calls, texts, cards, letters, emails, thoughts and prayers.  They truly lift us up.

10/5/09:  (Update from Eric)  I wish Cowbell did cure Fever........

Well, about 4 hours after i finished yesterday's update, Presley spiked a fever.  It got as high as 101.4 around 4:30 am during her second dose of AraC.  They gave her tylenol, drew some blood cultures and started her on an anti-biotic as a precautionary measure.  We were up and down most of the night and they restarted her TPN after the chemo was down around 6am. 

Dr. Mueller made her last rounds this morning as she is off after two weeks of attending.  It's too bad.  I really like her because she is no-nonsense and doesn't make you tell the history again and again.  Her residents do not say a word when they come in the room with her which is also a bonus.  Anyway, she said that the fever is more than likely a direct effect from the AraC chemo but they will watch the cultures for something more serious.

Peri relieved me after putting Piper on the bus and I headed to the office.  The only good thing about staying nights at TCH is my commute is about 10 minutes.  Pres slept most of the day and they kept her full of zofran and phenergren to help her with the nausea.  Uncle Muff dropped by again this afternoon and hung with them before his meeting @ 6:30pm.  They started the 3rd dose of AraC at 3:00 so we are almost through with the scheduled chemo.

Our day nurse today was Lisa.  She is very good and I knew we had her before but couldn't remember when.  After I left, she told Peri-Ann that she was our nurse the day they diagnosed Presley.  She said she felt so bad seeing our shocked and hurt faces and unfortunately has seen "the face" a few times in her career.

HAPPY NOTE:  Our little friend Grant got admitted today as well.  He & Presley are the only Philadephia + patients at TCH right now so we stay in constant touch and keep tabs on his progress.  He is only 3 years old and cute as a button and he ADORES Presley.  His mother Melanie was getting settled into the room, so PA went over to sit with Grant while Melanie got all of their stuff from the car.  Uncle Muff was hanging (aka napping) with Presley so all was cool in 912.  As soon as PA walked in the room, Grant asked where Presley was.  Peri-Ann sat with him until they were all settled.

After I got to the hospital, Presley & Peri-Ann went visiting again and Grant's face lit up when he saw Presley.  He just stared and smiled at her the whole time she was in the room.  I see a crush forming already and look forward to seeing it blossom when he becomes a young man.

Before Peri-Ann left for home tonight, we talked about how proud we are of Presley.  It literally makes me ill to think of the transition from Friday to today that she has endured physically.  It takes all of our will to take a happy, seemingly healthy 12 year old kid on Friday and take her to the hospital for "medicine" that we know will make her sick and weak again.  This is the toughest thing to wrap your mind around the chemotherapy treatment.  It's hard to believe "medicine" that makes your child so sick is hopefully healing her in the long run.

So, if it is that difficult on Peri-Ann & I, can you imagine being 12 years old and it is your body that is getting pummelled on a regular, voluntary basis.  She never fights us about going to the clinic or coming in for treatment.  She isn't happy about it but she doesn't fight it or complain one bit.  There are times when she is in the hospital that she "just wants to go home", but never fights her treatment.  Courage is a word that is often over used but I believe it is pretty accurate in this sense.  I truly admire our daughter's courage to do the things she must do to be healed.  I have never done anything in my life to deserve something so beautiful and strong and courageous.  I am so lucky and so unworthy.

She is sleeping peacefully now without fever but has gotten sick a couple of times this evening.  We start the final dose of chemo at 3am and then we will monitor her blood counts, watch the cultures for infection and try to keep the fever at bay.

Thanks for all of the calls, emails, texts, fb, thoughts and prayers.  They truly lift us up. 

Finally a HUGE thanks to Beth Beard for setting up the Team Presley "Light the Night" walk in the Woodlands on October 25th.  A HUGER (if that's a word) to those who have joined Team Presley and are giving their time, money and feet to support Presley & all other leukemia patients in their battles and war.

God Bless.

10/1/09 - 10/4/09:  (Update from Eric)  Another strange trip in this long journey.......

As you read from Pres & Peri's update, Pres had an appointment at the clinic on Friday to check her counts and then be admitted for a round of chemo.  They arrived at 11:00am for her appointment and got into Band-Aid junction rather quickly.  Her counts were excellent which mirrored her good spirits and energy level.  They saw Cara, our nurse practitioner, for a few moments because Dr. Redell was at the Children's Oncology Group convention. 

Unfortunately, the 9th floor was full and they told Pres & Peri that there was probably no chance of getting a room on Friday.  So they put them on the call list and sent them home.  It was kind of a blessing in disguise.  Presley's friend from school was having her 12th birthday party Friday night and with her counts so high, she got to go for a little while.  They had a treasure hunt and she had a blast.  It was good to see her being a normal almost 12 year old kid again.

When they put you on the call list, they can call you at any time of the day or night with an open room.  There are discharges in this hospital at midnight, transfers to other floors at all times and other crazy stuff that can impact room availability.  We half expected to be called at 2:00 am and have to head down to TCH.  Our friend Blake has gotten several calls like that over the past year. 

SIDENOTE:   Blake had his last hospital chemo this weekend and was discharged on Saturday around noon.  We are so happy for Blake, Deanna, Jim & Toni.  They have ridden the cancer roller coaster and now are at the end of the ride.  They will still continue to have regular check ups but at this point, Blake is cancer free.  There is much to be said about faith, hope, love & modern medicine.

Saturday morning we woke up, got dressed and were still expecting a call to come into the hospital.  Since we had not heard anything by 9:00am, we decided to go to the Xtreme volleyball gym and watch the scrimmage.  Their were having a fall ball scrimmage and they decided to have a concession stand and donate all proceeds to Team Presley.  The gym has been a tremendous source of support for Presley and our family.  Piper is now playing Cobra ball on Friday nights and is loving it. 

We made it up to the gym right at lunch break.  Pres & Pip had hot dogs and just hung out with all the girls.  It was great to see all of our Xtreme family.  I really want to thank Ray, Dan, Dino, Greg & Beth for all of their hard work on the concession stand.  The food was great and the Team Presley banner looked beautiful.  We also got to watch the girls scrimmage for a couple of hours.  It was bittersweet for us to watch Mia, Regan, Alex, & Abby and see how much they have improved in just a few months.  Their confidence has grown tremendously and it is showing in their play on the court.  I know Pres really wanted to be out there but she handled everything with grace & dignity.

After the scrimmage, we went and watched a couple of football games (including Tech vs NM) with Mike, Beth, Abby and Alex at Fox & the Hound.  After that, we headed to Mike & Beth's to watch more football and let Pres rest.  PA & I were getting nervous about no call from the hospital so we went to the house and checked the answering machine just in case.  NADA.  So, I called the 9th floor and asked for the charge nurse, which just happened to be Angela.  I told her I was just checking to see if we were actually on the list.   She said they were in the process of transferring a kid off the floor to make for us.  Good news.  However, we know nothing happens fast at TCH so we still had a few hours to kill.

Finally, we got the call and left Piper @ Camp Beard for the rest of the weekend.

We arrived at TCH at around 8:00pm and checked in at the ER desk downstairs.  It took about 10 minutes to get cleared and we headed to the 9th floor.  JACKPOT --  We got one of our favorite nurses - Stephanie.  She was excited to see Presley and she had everything in order and ready to roll.  As we got settled in, she got the chemo and fluids ready.  Finally, around 9:30, she brought in the IV pole loaded for bear.  It is here that Boydstun Hospital Law kicked in once again.

Presley has had her port accessed since we left from our last hospital stay.  She has been getting TPN every night at home to help her maintain her nutrition and gain back some weight.  At the clinic on Friday, they took counts but didn't change her needle because we were due to be in the hospital for the next few days.  So, when Steph tried to flush her line - It wouldn't budge.  No saline, heperin, or blood return.  So, our next move was to reaccess the port and change the needle.  Presley does not handle this well so it was even more discouraging when the new needle could not flush or get blood return.

Stephanie then called in Angel and she reaccessed with another new needle.  NADA - NOTHING.   This is not good.  Only explanation now is there is a clot in the port.  So, we had to put off everything until morning.  Stephanie had a pretty rough Friday night and this was the frosting on the cake.  She was visibly upset as were Presley and Peri.  One day delay due to no beds available, and now another day delay due to the port.

So, Sunday morning we are greeted by Debbie (our favorite Canuck nurse), an XRay technician and a TPN - IV specialist (Amy).  She first tries heperin & saline again with no luck.  Next, she tries hydrochloric acid to dissolve anything that may have crystalized in the port. NADA.   So, we go to the last chance - Altaplace.  It is a drug that is supposed to dissolve clots in situations like this.  2mg in the line and then left for 2 hours to work it's magic.  While administering altaplace, they use a technique that pulls out the fluid in the line and replaces it with altaplace.  They pull back on the syringe to get a blood draw and then let go, popping the syringe.  Stephanie did this numerous times the night before trying to unclog the port.  As she pulled back on the altaplace, she lets go and the syringe pops and cracks spraying all of us with saline and altaplace.  Guess what - she has never had that happen before - BOYDSTUN HOSPITAL LAW.

Meanwhile, Dr. Mueller drops by as she is the attending physician this weekend.  She explains that if altaplace doesn't work that Presley will get a regular IV, chemo will be given and then will have another surgery to replace the clotted port.  Talk about depressing news.

So, two hours roll slowly by and Amy & Debbie come in to check the port.  No progress.  They work on the port, changing the angle of the needle and continue to pop the altaplace.  I am holding Presley's shirt collar out of the way to keep the area sterile, Peri-Ann is holding her hand and trying to console Presley.  We continue to work on Presley for 10 minutes.  I have given up and accepted we are going to have to give Presley an IV and another surgery, when all of a sudden, Peri & Debbie start like they have been shot.  The altaplace syringe disperses in the line and Debbie pulls back with blood return.  It's slow, but it's a huge step.  She pushes it back in and pulls back blood return.  It's working again. 

I have never seen such relief and joy from seeing my daughter's blood.  Peri-Ann and Debbie are crying like babies and Presley's tears are actually out of relief and happiness instead of pain and agony.  Amy fills the line & port with heperin to open it up even more and we are cooking with gas.  Tragedy avoided. 

So as I type this update, we have had one of the four doses of AraC Cytarabine, the Swine Flu has made it to the 9th Floor, the Broncos have defeated the Cowboys and Presley & I are back into our groove her at TCH.  She has been nauseas and has gotten sick once so far from this medicine.  That's OK.  We will take that if we can just avoid the fever in the next 72 hours. 

Thanks to all for your calls, texts, emails, fb, thoughts and prayers.  Thanks to Xtreme for showing us a great day yesterday.

9/25/09 - 9/30/09:  (Update from Peri and Presley)

(Peri-Ann) As Eric reported last week, Presley and I left the 9th floor of TCH on Thursday evening.  Speaking of the 9th floor, it has become our 2nd home.  We have made friends, found wonderful caregivers, and are starting to "learn the ropes.".  Unlike most of the time, when people are discharged from the hospital, it is required that you have a wheelchair and an escort to take you to your car.  NOT on the 9th floor, as I'm packing the bags, Presley is making her rounds telling her favorite nurses (which has continued to grow) goodbye!  Its just like leaving a hotel we never say "Goodbye" we just say "see ya later or see ya next week", carry our own bags and walk to the elevators.

(Presley) Yep, my mom is right. Every time I leave I always tell my favorite nurses goodbye. I got a pink poodle as a gift and it was one that people were suppose to sign, so I had all my favorite nurses sign it and the signatures continue to grow every time we go in.

(Peri-Ann) When getting home, Presley still had some of her mouth sores but they seemed to be getting much better and she was determined not to take the morphine pills - she still seems to amaze us everyday. By Friday night she was feeling so much better and had bargained with her dad to treat her to Kobe Japanese Steak House.  We are still very nervous about taking her around too many people, but figured the heat from the hibachi stove would kill of any bad germs that may come her way.  It was a great outing for the 4 of us and she really seemed to enjoy herself.

(Presley) When