9/4/09 - 9/9/09: (Update from Eric)  Who would have ever thought the "Bed Bug Saga" would be the Good Old Days?  Peri updated last week about the Vincristine treatment and Lumbar puncture that was so much fun.  Presley had been doing well but this round was obviously wearing down her strenghth and stamina.  The vincristine has caused us one hospital stay by dropping the sodium count too low and unfortunately it has now cost us another one.

Presley has gone to school a couple of days and I took her on Friday for lunch and the back half of her math class.  When I returned to pick her up, she had already been in the nurses office for about twenty minutes.  She gets tired so quickly and is very weak.  Since her treatment was on Monday, we expected her to "bottom out" on Friday, but hoped she would start to recover Saturday.  She spent the rest of Friday, sleeping in her bed.  She has also been having a lot of leg and back pain in the past week.  Some joint and jaw pain is a side effect of the vincristine but this pain was throughout her legs.

On Saturday, we had some neighbors and friends over for brisket and swimming.  We hoped Pres would feel well enough to join us in the pool. Unfortunately, she had not improved much and spent most of the day in the chaise lounge by the pool or in her bed.  She wanted to go to the beach (Galveston) on Sunday and although she didn't feel well, she was going no matter what.  She & Piper slept the entire two hour ride to Galveston and when we go to the hotel, our rooms weren't ready.  The Bortmess family joined us on the trip so we decided to get a big poolside lounge bed with an umbrella so Presley could be comfortable.  She only joined us in the water once and spent most of her time asleep on the bed.

We ordered room service Sunday night and Presley ate a little bit, but unfortunately wasn't able to keep it down.  She had a pretty restless night with leg pain and nausea.  In the morning, she joined me on the balcony while I was playing guitar.  She started crying and apologized for ruining everyone's holiday.  What a kid.  She has not felt worse in her life and still continues to worry about other people.  I asked if she wanted to head home and she said she wanted to go to the beach.  We got ready and made our way to the beach where we rented an umbrella and some chairs along the water.  She waded out in the water for just a little while and then went and lay in the shade on the sand.  She spent most of the time sleeping.

TIMEOUT -- PIPER STORIES:
People often ask Peri & I how Piper is doing and coping with all of this.  I can tell you that she is fine and is usually in her own little world.

She doesn't like it when Presley feels poorly or is in pain.  She usually plays outside with her friends when Presley is at home.  When she visits Presley in the hospital, she will do crafts or draw / color with Presley when she feels up to it.  Otherwise, she plays in the 9th floor play room or with other patient's siblings on the floor.  Kids adapt quickly and she has become even more independant. 

The other night, she crawled in bed with Presley and fell asleep.  Around 12:30am, I heard her come in our room and come to my side of the bed.  Mainly, because she knows I give in and let her sleep in our bed much easier than her mother.  She walks up to my side of the bed and says "Dad, it keeps going back and forth really fast."  I wake up and am confused.  "What Piper?" 

"Dad, it keeps going back and forth really, really fast like Air hockey".  I am totally confused now and ask her "What is going back and forth really fast?"  She replies AND I QUOTE:  "My mind, dad!  It keeps going back and forth really fast and I can't go to sleep".

Where in the world does a six year old come up with that?  Of course, I let her in bed and her mind obviously slows down when it hits MY pillow because she is out like a light.  I, on the other hand, go outside in the yard and look for the pot she must be growing.

Our last trip to the beach was to Clearwater, FL a couple of years ago.  Piper was 4 and not a big fan of water at the time.  She didn't like the waves even when I held her in my arms and walked out into the water with her.  She obviously wasn't the fish she has become today.  This trip, she had no issues with the water.

Nicole Bortmess is in 7th grade and met Presley on a trip when they were down from Chicago looking at houses.  They hit it off but unfortunately, Presley was diagnosed a couple of weeks later.  Piper thinks she is the bomb and likes to hang with Nicole when she is around.  Well, Nicole rented a boogie board and Piper of course go upset because she wanted one too.  Todd & I went to get some lunch and when we came back, Piper had a board and was trying to fight the waves, but they were bouncing her around quite a bit.

So, I took Piper out on the board where the waves began.  I told her that I would boost her into the wave and she would need to kick like crazy.  Sure enough, she caught one and rode it all the way to the beach.  She hopped off the board and turned and gave a fist pump.  So, we caught waves for the next hour and a half.  At one point, the waves were thinning out and she asked me "Dad, where are all the waves?"  I told her, that finding the perfect wave was just part of the game.  After a bit, she caught one and rode it to the beach.  I went and got her and towed her back out.  I told her we would catch one more wave and then we had to go home.  As she is laying on the board waiting for a wave, I hear her say "It's all part of the game, it's all part of the game".  What a kid!  At least she listens to me sometimes.

So, I boost her into a wave and she doesn't catch it and only goes a few yards.  She thinks that's the end and starts crying and yells "Dad, that was not the right wave".  We get ready again and she catches a good one to end the day.

Presley and Piper sleep the whole way back to the house from Houston.  Presley is weak and tired and Peri has to carry her to her room and bed.  I sleep with her Monday night and she has a very bad night with leg pain and nausea. 

At work on Tuesday, I call home around 1:00 to see she did with her home bound teacher.  Peri said she got sick and was in bed.  I called Dr. Redell and she told us to bring her in to the ER. 

PA & Presley arrived around 2:00 pm and they took vitals.  Presley now weighs 50 pounds.  That's right - 50.  When she was diagnosed, she weighed 72 and now weighs 50.  She is literally skin and bones and they are concerned.  She is also dehydrated so they are going to give her fluids.

Everyone has heard of Murphy's Law right?  Well, from now on in Texas Children's, it will be known as Boydstun's Law!!

We have documented that Presley struggles with getting her port accessed.  She gets very anxious, nervous and upset and this time was no different.  So, as they were preparing to access her, she was getting upset and crying.  In this little ER room, there were 3 ER nurses, PA & I and a Child Life Specialist.  Child LIfe Specialists are basically there to explain things in kids terms to the patients, keep them entertained and take the mind of the upcoming procedure.  WE have encountered good specialists like Dana in the clinic and not so good ones.  Well, obviously this one did not have much experience with older kids.  She asked Presley what sticker she wanted for her port dressing - Elmo or Dora the Explorer.  HELLO, she is 11 years old.  She outgrew them back when the child life specialist was in junior high.  So, I took over trying to calm Presley.

The nurses brought in the tray (kit that has everything needed to start the IV) and then noticed that they were giving detailed directions to the youngest nurse.  PA & I lock eyes and you guessed it - a first timer.  Texas Children's is a teaching hospital and we have had our run-ins with interns and residents but the nursing staff has always been outstanding.  I decide to give the rookie a shot -  Poor decision on my part.

I am trying to calm Presley by holding her hands and her head and looking in her eyes while the rookie gets ready to access the port.  As the nurse is about to put the needle in her port, I look and the rookie's hand is shaking like a leaf.  She is very nervous.   And because she is so nervous, she tries to be gentle and punctures the skin and not the port underneath with the needle.  Not once, not twice, but three times before she gets it into the port.  Then, it gets better.  They hook up the flush and it won't flush or draw blood.  They have to pull it out and do it again.

I have had enough and explain that someone with experience is going to access the port.  The rookie can learn by watching.  Sure enough, the experienced nurse accesses with little pain for Presley and gets us rocking.

The Crux of the Matter -- Presley's condition and treatment>>

Presley was dehydrated and her electrolytes were out of whack.  She needed a magnesium infusion, which also required a neurological exam as she was getting it.  This is another story altogether.  Her WBC and ANC were low but she doesn't have a fever or sign of infection which is good.  They admitted her last night and we got a room around 10:30pm.  She slept fitfully but looked a little better this morning.

I spoke with Dr. Redell this morning and we agreed that vincristine is the culprit again.  It has been very rough on her both times.  Pres was scheduled for a GFR (kidney test) this morning but they decided to postpone.  They want a true baseline of kidney function from the GFR and they don't feel her body would give an accurate reading in her condition.  They are also considering postponing the chemo scheduled for Friday.

Tomorrow, the leukemia team will be meeting and as usual, Presley will be a top discussion.  After that, we will have a better idea of where we are going.

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

Also, a special thanks to the Shell Adopt a Boydstun program.  Everyone has been so supportive of Presley and our family and even now you go above and beyond the call of friendship.  Thank you so much for your thoughtfulness.


8/31/09 - 9/3/09:  (Update from Peri)  Well...... we have officially hit the 100 day mark!  Most of the time its hard to believe it has ONLY been 100 days. Sometimes it seems like years, but thankful for everything we have learned in just a short time.  Dr. Redell continues to tell us it will get easier and I continue to ask WHEN?  She promises it will happen, but does admit we have definitely "thrown some curve balls into the fight."  With all that being said, let me give a quick recap of he past week, what has happened this week, and the plan for the next phase of treatment.

As Presley wrote in her update, we went to the clinic Monday and she received Vincristine (which is only a 15 minute IV push).  The problem is when we go to clinic, we usually have to wait at least 2 hours to get the push and by then she has worked her self up and needs Adivan to calm her nerves.  As Eric has stated in previous updates, the clinic is an experience in itself - a huge room with children all around with all types of cancer walking, sitting, and sleeping with their IV poles.  It is an "eye opening" experience to everyone involved.  We got home later that afternoon and all seemed good.  During the week her joints started to stiffen up and lots of muscle pain, but she was able to start her home-bound school curriculum.  The teacher (Ms. Yoakum) comes to the house 3 days a week for a total of 4 hours.  Also, she was able to make it to her school and meet her teachers - they are wonderful and willing to do whatever they can to help her have a successful 6th grade year. 

On Sat. night, Eric and I were able to go out for the evening to do our Fantasy F-ball draft (by the way - the P3 Punishers will kick Booty this year).  Thanks to Nicole Bortmess for coming over, bringing pizza and hanging out with the girls!

Monday, we were back to the clinic for a doctor visit, counts, and and Lumbar puncture (LP) (spinal tap) and a push of Vincristine.  Once again, it turned into an all day affair.  Our appointment was scheduled for 10:30 and needless to say, we left the clinic at 5:00.  They  did not began the LP until around 2:00.  The LP is usually done at PACU where she is completely sedated.  However, there weren't any spots so it was performed in a room in the clinic.  She was given some sedatives so she wouldn't remember and then a local in her back prior to the LP.  Needless to say, this will probably never happen again!!  The medication they give her to "make her sleepy" also makes her very teary which lasted throughout the day and the night.  Bless her heart, she just kept apologizing and crying all the way home and until we finally got her to go to bed - thank goodness she doesn't remember any of it, but "pulls on your heart strings" as a parent watching your child go through this.

Tuesday she decided she wanted to try to go to school, so she got all ready, drove her to the school, and by the time we walked in I could tell she was a nervous wreck.  Honestly, I'm not so sure who was more nervous her or me - I felt like a mom taking her child to Kindergarten on the the 1st day of school - I just had this huge lump in my throat trying to hold back the tears.  So, as we stood their waiting for her class to come into the room, I started hearing the whispering "There's Presley"!!  Then as the class filed in one of her friends ran up to her and gave her a BIG hug.  At that point, I knew she would be ok.  She handled it for about an hour - which was fine, because then she had home-bound coming later that afternoon. 

That evening Eric took Piper to the doctor, her nose had started running on Monday and now with Presley you can can't be too cautious.  Well, after only 1 week of school Piper now has 2 ear infections and a sinus infection, which means she will wear a mask until the antibiotics are working and she is no longer contagious.  Piper is so funny, she doesn't even know she is sick, she never even complained about her ears and now giggles when she wears the mask.  She definitely keeps humor in our house!! 

Thursday Presley attended school again and actually stayed for lunch and recess - this gave her the opportunity to see and talk to more of her friends.  It was a good day!   When I picked her up, the nurse told me it was SO GOOD to see her outside with the kids and the cute smile on her face.  Yea!!!!

So, here are the plans for our next round of treatment.  We are scheduled to go Wednesday, September 9th for another GFR (kidney function test).  If you don't remember from an earlier update, a normal person's kidney score is around 80.  Her last test was 38.  We are hoping that it has continued to go up.  We need it to be at least 65 for methotrexate treatment. 

However, Dr. Redell wants to go ahead and proceed with our next round of chemo but we are rearranging the protocol to allow Presley's kidneys to continue to improve.  So, instead of giving the  Methotrexate (this is the chemo that we call the BAD medicine),  we are proceeding with Etoposide and Cyclophosphamide.  She has had these chemos before and her body seems to tolerate them well.  Etoposide can cause bladder problems, so Mesna is given with it to protect the bladder.  We will be admitted on Friday, September 11th and hopefully be discharged on Tuesday the 15th.  After that, we should be on a two week break to let the kidneys recover, and then will revisit if her body can handle the Methotrexate.  Please keep her in your thoughts on Wed. and next Friday, that her kidneys and body are ready for the next fight!!

I know many of you have made donations through the website and directly to Chase and because of the way the account is set up, I'm having a hard time finding out who has made these donations.  Please know how much these are TRULY appreciated and if you have a chance, please just send me a quick email to let us know.  We would never want anyone to think they have been forgotten.

Again, we are so grateful for all of the WONDERFUL emails, cards, texts, phone calls and prayers.  We hope everyone has a safe and happy Labor Day weekend!!

Much love to you ALL!!

8/25/09 - 8/30/09:  (Update from Presley)   Hey everyone. This week has been an okay week for me. I just have been sore all over. It hurt so bad. Well, my phone got stolen at TCH. Ya, can you believe it?  Well anyway, I got a new phone and it is so cool! It is the rumor 2. This week I also started home schooling. My teacher is so nice, but I will also get to go back to school. I'm so excited. I'm ready to see all my friends again. I went to the school and met my teachers. They are all so nice, but my science teacher looks like she is about twelve. Well, I go back to TCH on Monday to get chemo and counts. Wish me luck.   Love you all, Presley
P.S. Go Yellow Jackets!!!  {my uncle's football team}

 
8/24/09:  (Update from Eric)  In my long winded update for the week, I managed to leave off some good results & what is happening in the next couple of days.

Her Bone Marrow Aspiration results came back on Wednesday afternoon.  This test is to see how much leukemia is in her body.  Her score came back @ 2.5.  Anything below 5 is awesome, so Dr. Redell was very pleased.  We must continue the treatment and put it away for good.

THIS WEEK:  Presley has an appointment today (Monday) at the TCH Clinic.  She will get labs drawn to check her counts, see the Nurse Practitioner, and then get a chemo push of Vincristine.  Should be in and out today and home this afternoon.  We have to watch her sodium counts during this treatment as the vincristine caused us a hospital stay last time.  Nothing scheduled for the rest of the week and will go back next Monday for similar treatment and a spinal treatment to finish up the block.  Thanks again for all of the emails, calls, letters, notes, blogs, thoughts & prayers.

8/19/09- 8/23/09:  (Update from Eric)  OK.  Sorry for the delay in updates.  It has been a crazy week from a business, family & Presley standpoint.  Last we left you, Peri & Presley were going in to begin the Re-Induction phase of treatment.  Here's the outline of what we did this week:

Monday: 
Clinic to run CBC (Complete Blood Composition), PACU for Spinal & Bone Marrow Aspiration, and Chemo Treatment (Vincristine & Daunorubicin). Peri & Presley left for the hospital and I left for Memphis on Monday morning.  Presley was tired from the weekend but has been feeling well.  Even though she has had her port accessed several times, she still gets very uptight about it and this time was no different.  They access her port and will leave it accessed so she can come and go over the next couple of days and doesn't have to get poked each day.  She did well, got her CBC and then headed over to PACU for the LP & BMA.  The LP (Spinal) is the chemo treatment directly into her spine to insure she does not get any leukemia cells in her Central Nervous System.  During our epic methotrexate saga, Dr. Nabil Ahmed said that 20% of all relapses come from CNS leukemia.  So, they continue to treat through the spinal chord until she is cancer free.
The Bone Marrow Aspiration is the test to see how much MRD (Mutual Residual Disease) her bone marrow is creating.  In other words, is her body still creating cancer.  These are not fun tests but they put her out @ PACU and she typically wakes up pretty emotional.  After her BMA & recovery, they headed back to the clinic and she got her chemo treatment and headed home.

Tuesday:
PA & Presley returned in the afternoon to get another Daunorubicin treatment in the clinic.  In & out - No issues. I on the other hand, flew through a hellacious thunderstorm from Memphis to Chicago.  The older I get, the more travel is a pain.  My fuse gets shorter & shorter and Murphy's Law gets longer & longer.  It is always comforting to be sitting on the tarmac in an aluminum tube and then take off into lightning, thunder & rain. Flying @ 30,000 and looking out your window at a light show that rivals Led Zeppelin "The Song Remains the Same" laser show, is not such a thrill anymore. We arrived in Chicago and had a rental car reserved through Avis.  Let me be the first to tell you that in today's day & age, Avis does not "Try Harder".  they could give a rat's ass.  I travel enough & my company spends enough money with them that we should have some clout.  Nope.  We get to the rental car lot, car is not ready, and spend 45 minutes waiting for a mini-van because the Tahoe we rented was not ready.  The East German counter person was kind enough to not charge me for a Tahoe price.  DUH!  Then she started to ask me if I wanted navigation and realized she couldn't even offer that.  Fun times in travel land.

Wednesday:
Presley is scheduled to be admitted for a new (for her) chemo treatment.(Cyclophosphamide).  Any time, there is a new drug administered in the protocol, they have to observe for side effects.  Therefore, an admission is required. So, we have this admission scheduled for a couple of weeks.  Clinic, hospital, doctors know this is coming.  PA & Presley are scheduled to be at the clinic at 9:30am.  They arrive punctually as ever.  No labs or anything - just waiting for a room.  And waiting.....  And waiting....  And waiting......  Long & Painful story short, PA & Presley were alone in the clinic with the cleaning people at 6:30 playing UNO. 

Here is one organizational flaw of TCH - Even if you have a scheduled admission, it doesn't guarantee you a room.  The other flaw is that they told PA & Pres, that if they left and came back, they would lose their place in line for a room.  The longer they waited, the more upset & anxious Presley became.  They started her on fluids around 3:00 and gave her some Attivan to calm her down, so she at least got a little rest.

I, on the other hand, am losing my mind in Chicago.  Peri-Ann is calling / texting me with updates and I am getting pissed by the minute.  Dr. Redell is on vacation in Montana, but I page her anyway.  Nothing.  Here's where it pays to know people:  I call Kathleen Casey.  I have mentioned & thanked her in previous updates.  She is the founder & President of Bear Necessities Pediatric Cancer Charity.  She has helped us immensely before with contacts and I call her to get the Big Boy's contact info.  After she delivers again, I send Dr. Poplack and email saying I want a face-to-face meeting when I get home Friday. I get a call from Dr. Poplack, fifteen minutes after the email - meeting is set.

Meanwhile, Presley finally gets a room around 7:30 and get our FAVORITE nurse - Lauri.  She ROCKS!!!.   Chemo is hung quickly and we are on our way.

Thursday:
Presley is doing well with chemo and I head home Thursday evening.  I head straight to the hospital from the airport and get there around 11:00PM.  Presley is asleep and resting well.  Lauri is our nurse again and all goes well.  PA & I spend a romantic night on a pull out couch together --  who needs Niagra Falls?.

Friday:
Our day nurse Katie, who is new to us, is awesome.  She works through our schedule and finds every angle to get us out and home Friday night.  Presley has to have two shots in her thighs and a pint of blood before we leave.  Shots aren't anybody's thing, but Presley doesn't do well at all.  She gets so worked up prior to the actual shot that it is impossible to calm her down.  There are crying fits, "Daddy, i don't want to do this" and so much anxiety, that the actual shot becomes a physical presence.  Her demeanor changes about four hours prior to the shot.  She becomes sullen, then edgy, then down right insolent.  We have had several nurses try relaxation techniques and Child Life specialists try things.  Unfortunately, our Child Life specialist this time thought "Where's Waldo" was a good distraction.  I had this visual of hitting her in the nose and asking her which knuckle Waldo was on.  Is that wrong?  We got the shots around 11:00, got my ear drums repaired at noon and headed off to my meeting with the head cheese @ 1:45.

Dr. David Poplack is very respected physician in Children's Pediatric Cancer circles and is "the brass" @ TCH.  We have met him once before in clinic because of our relationship with Kathleen Casey.  This meeting was a little different.

I wanted to meet with him not because I am upset with Presley's treatment & progress, but because of the chaos and lack of attention and organization of our entire ordeal.  PA & I are not high maintenance.  If you think we are, please send an email to kissmyrear@pbkicksit.com  All we want is for Presley to get the very best care available and attention to our concerns & issues.  If you have the time, scroll back through this chronicle of our care and start counting our issues.

I walked into his office and he went on a 5 minute apology speech and mentioned the "bed bugs" 5 times.  Let me tell you, TCH is embarrassed and maybe a little scared about that incident.  It had no bearing on my meeting.  My biggest complaint and concern is the lack of communication and organization around this entire process. We have had a STRANGE TRIP - even by pediatric cancer standards.  The good thing is it doesn't relate to Presley's treatment and progress - the bad news is all the other stuff adds to the stress of the situation for Presley and us.  We were diagnosed prior to Labor Day weekend when everyone was on vacation, so we didn't even get the basics in the beginning. 

THANK GOD for SAM McELROY or we would have NO IDEA what the hell lay ahead of us.  THANK GOD for Lance "our first night nurse" that introduced us to Jimmy & Deana Lieberman and they gave us insight and a heads up about the clinic.

All of our insight into this roller coaster ride has come from people outside Texas Children's Hospital and that's what my discussion with Dr. Poplack was simply around: 
If PA & I are Presley's advocates in this treatment, Who is our Family advocate? 
Who do PA & I go to when we have issues outside of treatment? 
Who the hell do we call so Pres won't have to sit 9 hours in a clinic waiting for a room?
Why do they not block rooms on the 9th Floor (Hemotology & Oncology) for cancer patients only?
Who do we contact to discuss issues about our child's mental / emotional health?

The crux of the matter is the primary doctor is supposed to be our advocate.  Although I LOVE Dr. Redell, I don't feel she goes beyond the treatment aspect.  She cares deeply about Presley and her treatment but beyond that we have been on our own. I told him of my conversations with Dr. Nachmann from the University of Chicago (whom he knows well) and I think I embarrassed him by saying we had to go outside of TCH to find someone to explain things to us.  Dr. Poplack was very cordial and apologetic.  I told him about Sam's trip to Houston after we were diagnosed and he was embarrassed that his staff had done such a poor job of education.  They have introduced a new policy since Presley was diagnosed that insures you meet your Clinical doctor prior to leaving the hospital after you initial stay. 

The tough news is that TCH is the largest Children's hospital in the world and has had a 16% increase in patients over the last 12 months.  Literally, they are bursting at the seams.  They are working on new patient admissions processes that will eliminate Presley sitting in the clinic for 9 hours but with any organization, one change to a process means a domino effect to other processes.  I expressed my concern that Non-Critical care patients took up rooms on the 9th floor when kids with cancer had to wait in the clinic or the ER.  They are working on that as well.

They are also building a new hospital in West Houston that will hopefully take the burden off downtown.  I hope it happens sooner than later.

Finally, he introduced me to Dr. Brigitta Mueller, the Clinical Director and would have introduced me to Dr. Stupor (sp) - Head of Leukemia if he was present. We have a DIRECT line of communication to the Brass now and believe me we will not be afraid to use it. 

OK.  Off Soapbox.

Pres got to come home Friday evening and we had a great weekend.

1)  Daddy & Shell Lubes won the Shell Mark Keller Memorial Basketball Tournament on Saturday donning sweet Team Presley jerseys. I can't walk, but victory still is sweet.
2)  We celebrated a Stinky 16 with Brandon Schard Saturday afternoon.  Good food & good times.
3)  School starts tomorrow and Piper is pumped. 
There hasn't been many updates involving Piper this summer.  Don't worry.  She has been busy & spoiled rotten.  She went up to the farm in Oklahoma and spent 10 days with Grammy.  She went to "Camp Beard" for a week while we were in the hospital clearing methotrexate.  She has been dancing to Michael Jackson's "Thriller" non-stop since I bought it as a joke for Presley.  The little chick has got some moves I don't even want to contemplate.
4)  Presley will go to Tom Cox Intermediate when her counts are up and she feels up to it.  I will give a more detailed description of her education after this week, when Homebound comes for the first time.

Sorry for the delay and "The Odyssey" of updates.

Thanks for all the emails, texts, calls, notes, thoughts & prayers.  Each and every one lifts us up. 


8/12/09 - 8/18/09:  (Update from Peri)  Sorry for the delay in an update, but actually things have been a little quite - which is a WONDERFUL thing in our world.  We did have a GFR test last Wed. (this is an all day test that shows how well the kidneys are functioning).  So, a "normal" person is usually in the 80's, when we left the hospital a week ago Presley's was 22 - very abnormal, it is now at 38 still very abnormal but Dr. Redell was pleased it is going up and permitted her to go ahead and start her next round of chemo because it is not one of the higher dosages.  When she does need the higher dosage her level will have to be up to at least 65 - so we now have that to battle with.

On Friday I had a meeting with Presley's school to discuss "home-bound" - this is where the school district will send out a teacher 3 days a week to help her with all her school assignments. I have to admit, I was really nervous about this meeting because Eric and I had requested that she be able to attend when her counts up and she is feeling well.  We really weren't sure how everything was going to play out.  Presley so needs to feel she is still apart of her 6th class, just as she was, before May 19th.  All I can say is that Ms.Corbitt (counselor) and the entire Tom Cox staff have gone above and beyond to make this work.  I couldn't wait to give Presley the great news.  Let me tell you, that is one of the BIGGEST/best smiles I had seen from her in about 3 months!!  She is SO excited to go - kind of crazy for an 11 year old huh?  We are learning so fast how we cherish every little thing that will make our sweet girl smile.

Speaking of smiles, she had another great weekend. Kendal came to visit her and we had volleyball tournments all day Sat. in the pool  - she played the whole time.   It was so fun to watch her get excited and even talk some smack to the opponents (which was usually boys against girls) - GIRLS ROCK!!

Well, we started our next round today, we arrived @ TCH about 7:00 am, had labs drawn, saw the nurse practicioner,  headed down to PACU for her spinal tab (chemo injections) and bone marrow aspiration. Then finally back to infusion room for IV chemo push of Vincristine and Daunorubicin, finally returned home about  4:30 pm. Needless to say it was a long day and the anesthesia seems to make her very emotional, so had quite a few tears.  We will return to clinic tomorrow for another dose of Daunorubicin.  Then admitted for Wed & Thurs for Cyclophosphamide (a new chemo) and then HOPEFULLY home by Friday.  We just want this round to go without any unexpected surprises - boring would be great!  

We will continue to let you how everything goes throughout the week. Again, we cannot express to everyone how much we appreciate the calls, text, emails, cards, thoughts and prayers.

MUCH LOVE TO YOU ALL!!


8/7/09 - 8/11/09:  (Update from Presley)  My mom, dad, and Piper broke me out on Friday night. We didn't even go home. My dad picked us up and we headed straight for the lake. We went to the Palamara's lake house in Crockett. I had a blast. On Saturday we went boating and had a big pasta dinner with all the neighbors. Then, on Sunday I went tubing with Julia and Mr.Jim threw me off right off the bat, but i loved it. My dad went tubing and wake boarding. He said he is so sore. Thank You to the Palamara Family for treating me like a queen.

Today me, Piper, and my mom are going to run some errands. I'm going to get my new school backpack. I don't know which one I'm going to get yet, but it is going to be super cute.

I go back to TCH for a GFR (kidney function) test tomorrow and then should be free until next Monday - Yea another FREE weekend!

Love You All,
Presley      

8/3/09 - 8/6/09:  (Update from Eric)  Well, we are on Day 13 of a projected 4 Day Hospital stay.  This has been the strangest trip of this whole surreal journey.  I last left you with a case of scabies and Presley's projected release date of Tuesday pending her methotrexate level getting below 0.10.  Well, guess what,  we are still freakin' here on Thursday the 6th of August.

Since Sunday's update - let me catch you up on events:
1.) Presley's methotrexate levels went from 0.27 / 0.18 / 0.15 / 0.14 / 0.11  --  We have to be below 0.10 to get the heck out of here.
2.) We have played jokes on several nurses and been paid back in spades
3.) I don't really have scabies (which is good) - IT WAS FREAKIN' BED BUGS (WHICH IS WORSE)!!
4.) Oh yeah, WE ARE STILL IN THE HOSPITAL.

Presley update:
She feels great, her counts are good yet her body cannot clear the methotrexate quickly.  Methotrexate is hard on the kidneys and they haven't bounced back as quickly as we hoped.  Her weight and blood pressure have fluxuated with the fluid intake and output.  Today, she looks great, her cheeks aren't as puffy but her color is a little pale because her red blood cell count is low.  However, since it is Day 12 after chemo, the docs believe her counts will start to trend up and don't think she will need a transfusion.  Sunday, Monday & Tuesday were tough on her mentally because she didn't hit the number to get out of here.  Wednesday it was Peri's turn to get emotional and today I was furious.  If you see a mushroom cloud to the South Friday morning.......

Another wrinkle thrown in the mix......Presley had her braces removed Wednesday before we began the methotrexate treatment.  One of the major side effects of methotrexate is mouth sores.  They form on the inside, outside and can even grow in the esophagus and are very painful.  Dr. Redell wanted Presley's braces removed because she didn't want them to irritate the mouth sores and potentially become infected.  Well, Presley didn't get any mouth sores.  So I guess we put a 2 year delay on straight teeth for nothing.

Dr. Redell hasn't made a decision on our path for future treatments with methotrexate.  There a couple of options:  (1)  No more methotrexate in the treatment protocol or (2) lowering the dosage on future treatments.  She has brought it up with other oncologists in the group and there are mixed opinions as usual.  We have a few weeks before we get to a decision point so I'll keep you posted.

OK.  We're EXTREMELY disappointed that we are still in TCH.  It is difficult to stay calm when we were supposed to only be five or six days.  The treatment didn't go as planned and an extra week has been hard on the mental / emotional state of everyone.  However, I would be lying if I said we haven't had some really fun times in the past week or so.  We have developed some really good relationships with some of the nurses and even if they aren't taking care of Presley, they all stop in and hang out.  A couple of good ones I will share:

*  Presley wanted Taco Bell the other night so I stopped and got her a TB kid's meal.  The toy was the coolest kid's meal toy EVER!!!  Well, I thought so anyway.  It was Mexican wrestling masks and capes for your thumbs to play thumb war.  TOO COOL!!!  Rich came by and we had several matches while Presley was laughing her rear end off!!  At one point, we had to stop because she couldn't breathe and we didn't want to get Rich to get in trouble for causing a patient to hyperventilate.  He stuck around for quite a while and Presley pulled up some funny YouTube videos. be  Pretty good night!

*  Each nurse on the floor has a wireless phone on the floor so patients can reach them if they are in another room or something.  We haven't had to use it much except for calling in for Radio Lollipop games and requests.  Presley & I got the list of all the nurses on the floor the other night and Pres started crank calling them.  I know, I know, we shouldn't be screwing with someone while they are taking care of a kid with cancer, but what the hell, you get awful bored in this place.  Anyway, Pres crank called Lauri the other night and Lauri got her back big time.
After Presley called, a nurse we had never met before stepped in our room and told Presley she needed to do a blood draw.  She had the BIGGEST NEEDLE & SYRINGE I have ever seen.  Presley's eyes were as big as saucers.  She couldn't speak.  The nurse said she had to draw it from her funny bone.  Then Lauri blasted in the door and Pres finally got it.

*  Blythe & Preston Palamara came up to see Pres on Tuesday evening and brought dinner.  Jim & I joined them after work.  Radio Lollipop was on and Pres & Preston were doing a craft and calling in for the radio contests.  Preston is a hoot.  He won the final big contest and we were all cracking up at what he was saying to the DJ on the air.  He was hilarious and Presley stomach was sore from laughing so hard.  The kid is a riot just like his dad.  However, I pity Jim for the next couple of years.  You reap what you sew.

Silver Lining Moment:  I know Presley & Peri have had fun during the day, but I will remember these nights with her for the rest of my life.  We have spent more quality time together in this hospital in the last 3 months than we have the last three years.  When there are no outside distractions (work, school, friends, TV, email) it is amazing how great a time you can have with your kids.  We have laughed, cried, snuggled and held hands and although I hate she is in here, I thank God for those moments.

Finally, the creme de la creme of hospital moments.  Last update I told you I went to my doctor to get treated for scabies.  Presley & I both did the treatment one night and they kept us confined to her room for a day.  Well a lot of good that did us.

Remember hearing from your parents or telling your kids "Good night, sleep tight, don't let the bed bugs bite".  Perfedtly harmless, sweet & cute.  I am here to tell you today that "bed bugs" are real and are venomous little creatures.  After treatment last Friday night, I kept waking up with more welts and bumps.  It became the big joke on the 9th floor and at work.  I had to wear long sleeve shirts because my arms looked so bad and my hands and neck weren't much better.  I woke up itching like crazy on Wednesday morning about 3:30 a.m and couldn't go back to sleep.  I surfed the web for a couple of hours and then tried to lay back down.  As I lay there, I looked down on my chest and there is a little creepy crawler.  I nabbed him and put him in a medicine cup.  It looked like a tick.  I showed our night nurse and she called facility operations. 

When Pres & I got back from her echo around 8:30 a.m., there were two people at our door.  I showed them the bug and they apologized and told me they would give us another room when one opened up.  PA relieved me and I went home and ran some errands.  Well, while I was gone, the perverbial stuff hit the fan. 

PA was sitting on the couch and a bed bug crawled on her leg.  She had gotten a couple of bites in the past day or two but nothing serious.  She caught it and showed it to the day nurse.  She called facility operations and told them to get down here stat.  The room next door had emptied and they were going to put us in there.  They brought down insect control and decided to check the room next door before we moved in.  Well, as Presley tells it, they pulled the mattress off the couch and then pulled the entire couch away from the wall.  Presley said the people in there went nuts and a lady ran out screaming.  Infestation of bed bugs!!!  The pest control guy said that this type of bed bug was from either South America or Jersey.  Leave it to us, we can't even get domestic insects.  We have to get illegal alien bed bugs.  They must be part of a cartel because they are brutal and vicious as well.

So, rooms 918 & 919 are completely cleaned out (including Peri, Presley and all our stuff) and then sprayed, aired out and we get moved to 926.  So Peri stayed with Presley last night and I went home and got a great night's sleep.  Don't worry, I checked the bag, clothes and everything else for bugs before taking it in the house.  I took pics of my arms hands, and back and hope Alicia will post to the site.  (Posted the pics above.  All I can say is "eeewwww".)

Sorry for a such a long update but it's been a wild week. 

Thanks for all the calls, texts, emails, thoughts and prayers.  Oh yeah, I'll never make any leper jokes or comments again.
Love to all. 


7/30/09 - 8/2/09:  (Update from Eric)   Still here at Texas Children's on Sunday night.  This is our longest stay so far and definitely the most interesting.  For Presley, it has been more difficult mentally since she has felt pretty well since Tuesday evening.  Peri-Ann & I have been trading shifts.  I take the nights and PA stays with her during the days.  We at least get to come and go and leave this place for a while.  Presley, although she feels well, is stuck in this place.  I am pretty sure it feels like prison.

I documented how good the nurses have been during this stay and we have continued to get good care through the weekend.  There has been one little incident that really makes it a true "Boydstun experience".  I have made jokes that Presley's diagnosis, treatment, and care have all been anything but normal even for leukemia patients.  First of all, she is Philadelphia Positive which effects less than 3% of pediatric leukemia cases.  Now, the HD Methotrexate treatment was brutal to her body and we will have to change the treatment in the future.  Now, youra truly throws a curve ball in the mix.

People have asked me how we stay up here with Presley.  Let me give you a brief description.

We have a nice size room with Presley's patient bed, TV, VCR, and Sony Playstation provided for her.  We also have a closet, our own bathroom (complete with bathtub & shower) and a nice pull out couch for us parents to sleep on.  Now mind you, it does not pull out like a traditional couch that creates a full size bed.  The cushion is equal to a twin bed and they provide plenty of sheets, blankets, etc.  During her diagnosis and initial stay, PA & I spent several nights spooning like our honeymoon because that was the only way we could both fit on the bed.  Whomever was on the outside had to get up with Presley for potty time or anything else.  Then the inside person moved to the outside and was ready for the next time.

When we checked into our room on Friday evening, we were running around taking care of several different things.  Nobody had time to sit down and relax.  PA left to go home to Piper and I stayed with Presley.  The cushion / mattress was horrible.  It was like someone with an ass the size of Delaware sat right in the middle and created a meteor crater.  By the time I got to lay down, it was too late to do anything about it.  The next night PA was going to stay and she asked Rich if she could switch cushions with one of the empty rooms.  He called and got us a new one.  I stayed with Presley on Sunday night and woke up Monday morning with bites on my elbow that looked like the "Big Dipper".  I showed the nurses and then it became a big joke on the floor.  We replaced the mattress again, but it didn't help.

Unfortunately, it just kept getting worse and worse and worse.  They grew from my left elbow to cover my entire left arm and then Thursday they started on the left side of my neck.  They itched madly.  I asked every nurse and intern to look at it hoping they might be able to give me something for it.  I also showed Dr. Redell as we rode down the elevator together discussing Presley's situation.  She said "Have you shown the nurses?".  Hell yes.  I have shown everyone.

Finally, Friday at work I couldn't take it anymore.  I left work, drove to my "doc in the box" in the Woodlands and waited 2 hours to see someone.  He walked right in and said "Ooh, that looks nasty.  Where did you get scabies?"  I told him Texas Children's Hospital.  That's Right!!!!  SCABIES!!  From a hospital!!  From some huge ass that formed a meteor crater in a mattress. 

Well, God hath no wrath like a mother / wife whose husband has been diagnosed with scabies in their daughter's hospital room.  PA went nuclear on the entire staff.  They brought in a team and disinfected the entire room.  Then they told PA & Presley, that I could not come back up here and stay with her even though I got them from this room.  Not a good move on their part.  I was staying with Presley come hell or high water.  So, we both got treated for scabies on Friday night.
Basically, it is just a cream that you rub in from head to toe after a shower.  I got a little concerned when I read the label and it said "Do not allow to remain on skin for more than 12 hours.  Seizures and or death could result."   I know it is just a precaution, but I hate to tell the manufacturer that I would have started to seize from the itching and scratching after 12 hours. BTW, the fallout is just now settling here in Room 918.  Nurses finally will meet our eyes as we pass them in the hall.  PA says we have the scarlet letter above our door now on the 9th floor.  Who cares?  My itch is finally easing up.  The thing that just boils my chili is I had to go to my own doctor to get some help.  Wasn't I in a hospital?

Anyway, Presley is feeling well and is READY to be PAROLED!!!  We just have to get her Methotrexate number down below 0.10 and it was 0.27 this morning.  We are hoping for a release tomorrow but more than likely it will be Tuesday.  She just wants to pet her dog, sleep in her own bed and be able to go outside of this hospital. 

Thanks for everyone that came and visited this weekend - Schards, Poseys, and Bortmess Family.  Special thanks to Papa, Bicki & Uncle Greg for coming down and hanging out. 

NEXT UPDATE:  Piper's new motorcycle gang - our neighbors in 915 & hopefully Presley's return home. Thanks for all the thoughts, prayers, emails, texts, and calls. Love to all. 

7/27/09 - 7/29/09:  (Update from Eric)  Sorry to leave everyone hanging......
Last update was dire and grim and I apologize for leaving it like that for so long.  It's been a wild week.  PA has been here during the days, while I go to the office and I relieve her and spend the nights.  The good news is my commute is only about 15 minutes from Texas Children's.

Monday was pretty rough on her as she was still had nausea and stomach issues.  She was up every hour or so in the restroom and was asleep when she wasn't there.  She had puffy eyes with dark circles under them.  I told her she looked like she had gone ten rounds with Mike Tyson.  Of course, she asked "who is Mike Tyson?".  I shouldn't have been surprised.  Just last week, I cut her out of the will because she didn't know John Elway.  Tyson, I understand, but John Elway?  Really?  Even the kids from "Slumdog Millionaire" know John Elway.  OK, maybe a slight exaggeration, but she should know daddy's favorite athlete of all time.

When I arrived from work on Monday evening, she had just gotten a phenigren push for nausea.  15 minutes later, she was still vomiting.  Something was not right.  Dr. Nabil came in and prescribed dexamethasone which is a steroid.  He seemed surprised when we didn't argue.  I guess some parents don't like prescribing "steroids" to their kids.  I've told you before, if it makes her feel good & normal again, I don't care what it is.  We got the "dex" and it seemed to settle her stomach and actually perked her up a little.  Monday night was still more of the same but at least her stomach was OK.

When I left for work on Tuesday morning, she had not eaten ANYTHING since Thursday night.  She was already skin and bones, so I begged her to try and eat some yogurt.  Two bites was all she took but at least it was something.  I left Peri-Ann and Pres and headed to the office.  Tuesday was another crazy day at the Dark Tower so I didn't get to check in until late afternoon.  I called Peri and guess what - Presley had pulled a Lazareth.  She was up, active, in a good mood and eating.  She had a second dose of "Dex" and it seemed to do the trick.  When I got to the room after work, she was doing great.  Piper & Debbie Roobaert were there and they were making necklaces and listening to "Radio Lollipop".

Other than the quality of care, the other reason TCH is so good is because it is geared specifically toward kids.  "Radio Lollipop" is a real radio station located on the 16th floor and piped through the TV in TCH.  They are On Air - Tuesday through Thursday evenings and kids can enter contests, request songs, call in jokes and even sing with the music on the air.  Presley had not paid much attention to it during our previous stays because we were here on the weekends and she also felt bad.  But here they were, trying to call in and win contests every 15 or 20 minutes.  The competitive side of Piper was unleashed.  If they weren't the right caller - she was pissed.  They won an art contest and both got prizes and their names mentioned on the air.  Too Cool.

Anyway, the last two days have been much better.   She has had no nausea and her stomach issues are infrequent.  She has been active with her sister and actually spent some time on the 16th floor today in the library and pre-teen rec room.  We played a serious game of "Boggle" tonight with a couple of the nurses Rich & Laurie.  Speaking of nurses.......

I really respect the nursing profession.  They have serious knowledge of medicine and deal directly with the patients much more than a physician.  They are advocates for the patients and patient's families.  In fact, I probably could have been a nurse except for that whole "studying in college" thing.  Whatever, I digress.  Anyway, since you deal with nurses so much, and they are taking care of your kid, you want to develop a good, healthy, trusting relationship with them.  In fact, I compare it to a more intense version of the relationship with the wait staff at a favorite restaurant.    One can handle poor service (slow, mistakes, spills) if the waiter or waitress is nice, respectful and fun.  This shouldn't surprise you about Peri-Ann or I, but personality plays a huge part in relationships with us.  The same goes with doctors and nurses.

We have had good and bad in our stints at Texas Children's.  During our first stay, we only had one bad relationship with a nurse.  After our ER episode, I scared the hell out of a nurse on the 7th floor.  Since then, we have learned that we can sway the "Charge Nurse" in subtle ways to get whom we want.  Friday night was not good, so we subtlely asked for someone else on Saturday night.  We have been blessed with some great people since then.  Laurie, Jerilyn, Angela & Rich have been awesome and Presley has really developed a relationship with them.  We are greatful for their care and interest in Presley.  Thank you very much. 

OK.  I have been rambling for 20 paragraphs and haven't even really given an update.  Here is the situation as it stands tonight:
We had to stop the HD Methotrexate dosage because her kidneys were becoming toxic.  They started the rescue drug Leucovorin and fluids to flush it out of her system.  We have gone from a Methotrexate score of 21,000 to 0.99 this evening.  Most would think that is good and it is somewhat.  However, before they let her out of here, it has to be below 0.10.  The last .89 is going to take a while.  Her kidney function is not 100% so they are watching her closely.  Dr. Redell estimated yesterday Presley would be in here for a week flushing her system.  We have had renal specialists in here and they say there should not be any long term damage or effects from this treatment, but they need to flush her kidneys for a while.

Her roadmap of treatment is up in the air right now.  Since HD Methotrexate is a big part of her protocol, our docs are not sure how we will proceed, but proceed and conquer we will. 

Presley is feeling well enough for calls, skypes and visitors but we will be here through the weekend.  Emotionally, she is wrecked right now.  She doesn't want to be in here 10 more minutes, so another week is forever.  Please keep that in mind if you would.

Thanks to all for the emails, blogs, calls, skypes, thoughts & prayers.  They lift all of us up so high.
Love to all. 


7/23/09 - 7/26/09:  (Update from Eric)  If you don't know from personal experience, the cancer battle is a roller coaster ride.  Extreme highs, extreme lows and some twists and turns that make you want to puke your guts out.  And that's just the cars with the people along for the ride. 

Imagine the 11 year old child in the lead car ratcheting up the climb to look over the edge and plummet so far and so fast toward the valley below.  She just hopes that the car and track she is on is safe and true and that when she exits at the end of the ride, she will be a better, healthier person that can look back on the experience and laugh.  Pretty dramatic metaphor for the opening statement in the update, huh?  That's where we are this weekend.

If you read Peri's update from last week, we were on a high for three straight weeks.  Presley's stomach problems were behind us, her counts were climbing and she was back to the little girl we all know & love.  Even when we went to the clinic on Friday, her counts were great and her spirits were high, even though she knew she had a 4-5 day hospital stay ahead of her. She had to have another lumbar puncture (spinal tap) and normally we do it in PACU where they put her under.  This time PACU was overbooked (it's like the airlines) and we were the fourth alternate so there was NO chance we were getting in over there.  So, we had to do it in the clinic under local anethesia.  They call it twilight, because you are still awake, still experience everything but they give you a drug so you don't remember anything.  It's kind of like three margaritas at Rico's.

She did great and we even got a room on our regular floor before 6:00 pm.  Then the fun began.  The treatment for this block was based on High Dose Methotrexate and ARAC (Cytarabine).  HD Methotrexate is a potent drug that works especially well on leukemia and especially in the central nervous system.  It basically gets in the blood cells and traps itself making it hard for the bad leukemia cells to fight it off and it explodes them.  The plan is to pump it for 24 hours and then flush it for 24 hours and then chase it with a rescue drug called leucovorin.  High doses of methotrexate are toxic and can't remain in the body for more than 48-72 hours without serious complications especially to the kidneys.  As with most drugs, there are different reactions or non-reactions depending on the patient.

First of all, we didn't even "hang the chemo" until midnight.  They had two chemo admissions plus Presley with our nurse and she couldn't keep up.  Second, Presley's little body wasn't very condusive to the methotrexate treatment.  It made her nauseas very quickly and she spent most of the night throwing up.  In the morning, the diahrea began and to be honest has only recently subsided a little.  The funny thing is: this was a good thing.  It put the doctor on call on notice and he was very aware of her case and situation immediately.

As I have documented, there is always a revolving door of attending oncologists, residents, and nurses in hospitals.  We are fortunate to get a GREAT one on this visit.  Dr. Nabil Ahmed was a knight in shining armor this weekend.  In fact, he probably saved Presley's life.

They began watching her creatinine almost immediately when she got sick.  Creatinine measures your kidney function.  When we did blood work in the clinic, the creatinine was 0.4.  Normal range for an 11 year old, 60 pound girl is 0.2 to 1.2.  During the methotrexate, they check blood chemistry every three hours.  Her creatinine immediately went from 0.4 to 0.7 in the first three hours of treatment.  Six hours later it was 0.9.  This and her sickness was a cause for alarm.  Dr. Nabil was constantly watching the numbers and communicated with us the whole time.  About 3 PM, 15 hours into the treatment, he decided to cut it off.  It was too dangerous to complete the dosage.  At this point, they try to flush the drug out of her body with fluids & leucovorin.  Unfortunately, her numbers continued to climb as the methotrexate built in her body.  We really got alarmed when he paged Dr. Redell.

The creatinine peaked at 1.3 this afternoon and is at 1.2 at 10:00pm on Sunday night.  If we would have continued the chemo, we would have been at extremely toxic levels.  Beyond leucovorin, there is another emergency rescue drug for methotrexate.  They ordered it, but it will not get here until Monday if she needs it.  Dr. Nabil feels like she is out of the woods although he told us that it will not trend down as quickly as it trended up but he feels good that we got it in time and hopefully there will be no irreversible damage.

The question Peri-Ann had was: Now What?  High Dose Methotrexate is a big part of our protocol and is consistent through the first year.  Dr. Redell visited us today and she really doesn't know at this point either.  I asked her if any of her other patients have had this issue and she said "this is the 2nd in 8 years @ TCH."  She will consult with the group on Monday.  Figures.  I hope Presley takes up softball when she gets well.  She can hit a curveball out of the park.

So right now, the game plan is to continue to flush the methotrexate out of her system and then determine if we continue this block of chemo or let her rest.  We are at TCH for at least a couple more days.  Please don't try to visit at this time.  She is asleep most of the time and doesn't feel well when she is awake.

Thank you for all of the thoughts, prayers, emails, blogs and calls. 
Love to everyone.     

7/18/09 - 7/22/09:  (Update from Peri)  FUN, FOOD, FAMILY & FRIENDS!!.........that is exactly how you would describe our past weekend.  After the great #'s we received on Friday, (a little crazy how our lives revolve around a bunch of  #'s), this meant we were able to have her out and about and around other people with little worries. So our weekend ended up fun-fill and fast-paced.

Friday Afternoon:  Meredith, Presley's step-aunt, came into town to visit and bring Presley a wonderful surprise from her pool party that she had the previous weekend in her honor.  Put it this way, they went on a HUGE shopping spree Monday:-)
Friday Evening:  We met the Bortmess family for dinner with live music, had a wonderful time and ended up closing down the restaurant.
Saturday Afternoon: TEAM PRESLEY HAS MADE IT ON NATIONAL TV We were watching the Pro Celebrity Golf Tourn and noticed that Billy Joe Tolliver (who previously played in the NFL and was a QB @ Texas Tech for Papa) was wearing a Team Presley bracelet.  She thought that was so COOL - we kept rewinding to make sure (TEVO for all you men).  Later that afternoon we went to the Palameros, with the Bortmess family, went swimming, ate brisket and burgers, listened to guitar and singing - Britney you are awesome!!
Sunday Afternoon:  Met the Thomas family over at the Beards for a cookout and swimming - it was so good to see our Wonderful Friends from Fort Worth, hangout with the Beards and see Noreen & Bob. As Presley was floating on the raft, wearing sunglasses and being served a  coke float - her dad officially renamed her "Princess Paris".  She had a fabulous time hanging out with all the kiddos.
Sunday Evening:  We finished off our fun weekend with seeing our great neighbors the Schards.

So, needless to say, it was a big weekend, and I think it all finally caught up with her on Monday evening.  She started to have some pain in her feet (really hard to explain because I really don't understand) but it is causing issues with her walking - she tells us its like needles poking all over the bottom of her feet and toes.  Eric called the doctor and she told him it could be a side effect and if there is no fever, swelling, or redness to try to treat with Tylenol. We have been doing the Tylenol and seems to ease the pain a bit.

Today we went and had her braces taken off.  We have been asked to do this since her diagnoses but seemed to have had things come up every time we had it scheduled.  The reason for the removal is because one of the major side effects of our next round of chemo is mouth sores.  So, here I go with the info on next round - I'm by no means as detailed as Eric with all this but will get it my best shot.

Next Round - Friday, July 24th - Consolidation Block 2
We will go in Friday to get port accessed, normal blood work and see if blood or platelets are needed Then go down to PACU for chemo to be injected into the spine (yes, she is put under out for this). The chemos in this injection are Cytarabine, Methotrexate, & Hydrocortisone.  Finally, hopefully sooner than later, we will be admitted for a 3-4 day stay.  This round she will receive 2 different types of chemo IV's (Cytarabine & Leucovorin)  and then a peg shot on the final day.  Hopefully back home by Monday for another couple of weeks to let her body rest and recover.

Once again, we cannot began to tell everyone how much we sincerely appreciate all the calls, text, emails, cards, love and support we receive on a daily basis.  Please keep her in your prayers this weekend that her body will be able to accept this round with no complications.

Much love to you all!


7/13/09 - 7/17/09:  (Update from Eric)  Well, if there is ever such a thing as a great day at a cancer clinic, then we had it today!!!  Presley, Piper & I went to the clinic this morning to check blood counts and get an echo cardiogram on her heart.  Pres is really starting to learn the ropes at the clinic.  We checked in and then waited back in the infusion room.  We were paged to Band-Aid Junction quickly and she got her blood drawn out of her arm and they didn't access port.  Veronica "The Vampire" was great and told Piper she wanted some of her blood too.  Piper said no and Veronica said, "OK, then let me bite your neck".

Presley also brought 10 blankets from Grammy to give out to kids that are cold or upset and want a soft, warm blanket.  Veronica said she would handle that with pride.  After that, we headed back to the infusion room.  The three of us were playing an intense game of "Trouble" when Dr. Redell sat down with us.

Counts This Week:
Hemoglobin (Red): 10.2 which is on the low side but no need for a transfusion.
White: 10.5 which is in the normal range.  WAHOO!!!  That's the highest it has been since diagnosis.
Platelets:  213 which is normal.  Another WAHOO!!!
ANC:    7240 which is AWESOME.  She has a healthy blood stream this week.
Sodium was 139 and we have been backing off a little on her pills.  Rock On!!

Dr. Redell was pleasantly surprised and excited for her.  We talked about next week and then she wished us a good weekend.  We actually stayed and finished the game of Trouble.  Piper got 1st, Presley 2nd and I got the bronze.

Our echo was scheduled for 2:30 so we had the nurse call and see if they could work us in.  Bingo!!!   They could fit us in now.  We rushed over to the hospital and waited about 15 minutes and Presley got to go back.  Out of there by 11:30 - a new record. 

So we headed to Mom's office and told her the good news.  Then we ate some pizza, stopped by my office and went to Ice Age 3:  Dawn of the Dinosaurs.

Pretty Darn Good Day!!!

We go back in the hospital next weekend for the 2nd Block of Consolidation.  Should only be a 3-4 day stay.  I will give everyone the low down later on this weekend.

Thanks for all the thoughts, prayers, emails, texts, cards and calls.  Love to everyone!!!!!!


7/10/09 - 7/12/09 (Update from Eric)  What a great weekend!  Presley is back to the fun loving kid we all know and love.  She went to the clinic Friday w/ Peri & only had to do a blood draw.  Her counts were great!!  They told her her counts and she asked "Can we go home?"  They said yes and she said "We're out of here Mom".  They didn't even have to access her port.

Grammy was here this weekend, so everyone knows what that means -  Extreme Home Makeover.  Presley called me Friday afternoon and said she had a surprise for me.   I knew it had to be something with her room.  Pres' room was the first one painted when we moved in.  I always describe it as "It Looks like a Pimp Threw Up!!"  Hot Pink and Zebra Stripes.  Now, we have added an aqua marine wall and aqua marine stripes on pink to the mix.  Holy Cow.  I will admit, I experimented with the mind-altering stuff in college and NEVER saw colors like this together.

We spent Saturday at the Schard's with Tyke & Jamie Posey.  Presley swam and ate like a horse.  It was a blast.  Today, we had surf & turf (steak & crab) with the Schard's and the Roobaert's.  Preston was awesome on Wii American Idol - Eye of the Tiger.  He has skills no one ever knew.  Grammy goes home Tuesday and life will be back to normal.

Thanks to everyone for all the blogs, thoughts, emails & prayers.

7/6/09  - 79/09:  (Update from Eric)  Home, Sweet, Home.
Presley was able to come home Tuesday night after her treatment in Texas Children's.  She had 5 straight days of IV chemotherapy and handled it well without any stomach issues.  She is in great spirits and is actually the girl we all know and love.  Although she gets tired easily, she has her wit and is her usual head strong self (especially when we ask her to take pills).  Providing she stays fever &/or infection free, she will have a couple of weeks off to recover and build her blood counts.  She must be doing well because the gaggle of doctors that flow through her room in the hospital don't really have anything to say.

I have documented the rotation of doctors, oncologists and interns that we have seen and endured in the past 50 days.  What is amazing to me is that I have a couple of interns reporting to me at Shell.  They are great, smart kids that have a GPA in college that my four cumulative GPA's would not equal.  However, I would not throw them in front of the buyers at AutoZone today to determine our future for the next year.  In the hospital, interns are under the supervision of oncologists that have the final word, but there are instances that interns get to call the shots.  We have had a few run-ins with them and it hasn't been good.  Everyone wants to make their mark in the world, but it isn't going to be with my daughter.  Point of this story --  always be the advocate for your child.

One of the amazing things about Presley is her sense of humor.  Obviously, in this family, she has to have tough skin.  Everyone (Daddy, Mommy, Papa, Uncle Greg) hack on everyone.  All is fair game.  She has been a trooper and is probably tougher because of her sense of humor. 

She has lost all of her hair.  For three weeks, it bothered her horribly.  Every time she ran a brush through her hair, pulled out a pony tail holder, or woke up from a nap, she last large amounts of hair.  I would wrap tape around my hand and dab all of the hair off her pillow and bed.  It broke her heart.  Two weeks ago, she took control and asked Ms. Madora to shave her head.  I think it was a huge relief to not worry about it anymore.  It took forever for her to grow hair and now she is back to where she was at 3 years old  --  Still Beautiful.  I called her "Sprout" in the hospital because she has a few hairs growing back.  Last night, I called her "Benjamin Button" and she said "I like Sprout better".

If you haven't seen or heard, I shaved my head in support.  Not to the scalp, but the shortest it has ever been.  Truth be told, I felt like a hypocrite.  I am trying to console my daughter who is going through treatment & losing her hair, that it will grow back and not to worry about it.  All the while, I am washing, drying, and styling my own hair.  Time for a change.  I told the chick at Great Clips, "This is the easiest $15 bucks you will ever make."  Presley loved it.

Back to her sense of humor.  As most of you know, I am quite the humorist and my kids are no strangers to my wit.  At the hospital on Monday, we had a nurse for the day that we truly love.  Debbie was our very first nurse in the hospital, Canadian and extremely engaging and thoughtful.  Presley & I were doing laps the other morning and Debbie noticed her bad posture.  She was hunched over like a little old woman.  Debbie told her to please pull her shoulders back and walk straight because she didn't want her to hurt her back.  I told her "it also makes your boobs look bigger" and explained that her last boyfriend broke up with her for a girl with bigger boobs.  Most kids would be mortified.  Not Pres.  She was embarrassed but laughed about it and gave me a hug.

She goes back to the clinic tomorrow for blood work only.  Her counts will be down but she is recovering well and is in "kick it" mode.

Thanks for all the thoughts, emails, notes, calls and prayers.  We read and appreciate each and every one.  Love to all.


7/2/09 - 7/5/09:  (Update from Eric)  It's strange how you can make something out of nothing......

On Thursday morning, we took Presley for her scheduled visit to TCH Clinic to get a Lumbar Puncture (spinal tap) and then be admitted to the hospital for the Consolidation I block of treatment.  As you have read from Alicia's update on Thursday, she had a pretty good week and a really good day on Wednesday.  When we left Alicia, Jordan, Ashley, and Debbie @ Lupe Tortilla's, she was pretty emotional and didn't want the fun to be over.  It was difficult for her to face going back into the hospital after such an up week.

We arrived at the Clinic and she got the Port-a-Cath accessed for the first time.  We were new at this and no one had given us guidance.  They called her back to "Band-Aid Junction" where they get your vitals and blood work.  No one had given us any numbing cream to put on prior to coming to the clinic.  It is good stuff but takes about 30 minutes to have any effect so, we had to go with the cold spray.  Presley was very nervous and her port was very sore from last week's surgery.
Mommy with her weak stomach around needles had to excuse herself so Dad had to step up.  They prepped her with cold spray and accessed the port. Other than being sore, I don't think Presley even felt it.  The procedure reminded me of using an air needle to air up a basketball.  She even hugged the nurse when they were through with the dressing.

Once accessed, her normal blood draws were completed and then we met with Dr. Redell.  I'm not sure she had ever met this version of Presley.  She was upbeat, funny and polite.  We discussed the bone marrow situation and Pres said she wasn't surprised they weren't a match since she & Piper were like black & white.
Her counts were good reflecting a recovering bone marrow.  We discussed the next few days of treatment and then she sent us to wait for PACU and the LP.

While we were waiting in the infusion room, she approached us with an older, distinguished looking doctor and introduced us to Dr. Poplack.  He is the head of oncology at Texas Children's Hospital.  Thank you, Kathleen Casey.  When we were first diagnosed, she pulled out all of her contacts and went straight to the top of TCH to Dr. Poplack.  He was out of town but made sure that his Lieutenant came by and made sure everything was OK.  Now the big guy was checking up personally on us.  I'm not sure if there is any direct effect on Presley's care, but it always good to know the name of the big guy and have the staff on their toes.

We headed down to PACU and got the LP and Pres was awake by the time we got to recovery.  She was jonesing french fries when she woke up.  It's amazing how quickly you become accustomed to things.  This was her 4th LP and now it seems like everyday living to her.

I have documented before that there are no guarantees when it comes to appointments, procedures and admissions.  We had been scheduled to be admitted for over a week and guess what - NO ROOM AVAILABLE on 9.  Being the holiday weekend, you would think that it would be no problem, but you would be wrong.  So for 3 hours we hung out in the Clinical PACU and then they moved us to the West Tower to their Surgical PACU to wait even longer.  We were hanging out with three & four year olds that got their tonsils out.  Finally, around 6:00pm we got a room at our home, sweet, home - 9th Floor.

After we got situated, it took awhile for our nurses (Lori & Rich) to hook up with us.  There were three admissions at the same time as shift change, so they were running around like crazy.  We were in no hurry and Pres was feeling well so we were happy to just hang out and watch TV.  Since we were admitted so late though, Pres didn't start chemo until 9:30pm. 

This block of treatment contains 2 major drugs that attack the leukemia - etoposide & ifosfimide.  Etoposide has the potential of a side effect that puts patients into anaphylactic shock (similar to someone who is allergic to bees and gets stung).  So they take vitals before they start, and then every 15 minutes during the push.  Presley was fortunate and no side effects occured but they kept waking her and taking vitals until 11:00pm.  Ifosfimide is another leukemia drug and it also has a side effect that could attack the bladder.  So, they have to give another drug called MESNA that will protect the bladder.  That drug must be administered EVERY 3 HOURS.  Hello, sleep deprivation.

I must tell you that our nurse Rich was fantastic.  He has been @ TCH and on this floor for 7 years, unheard of for this type of treatment.  You could tell he was the experienced veteran of the staff.  There were several times he was approached by other nurses and asked about issues with their patients.  He informed us that two years is about max for a nurse to stay in this area.  It is very stressful physically and 10 times worse emotionally. 

OK.  I just realized I am writing the War & Peace of pbkicksit.com updates.  Sorry, it was a busy weekend.  3 more stories and then I'm out.

1.)  It's amazing how small the world has become the last 40 years.  Friday morning, I headed to the Family Lounge on the 9th floor which is sponsored by Ronald McDonald House to get ice & water.  As I am standing there at the ice machine, I noticed the RMH volunteer cleaning up the sink area.  I turn around and Holy Cow, I know this kid - Jarrett Hubert.  We met about two weeks before Pres' diagnosis @ Debbie & Preston's Cinco de Mayo party in Katy.  He told me he had heard about Presley from Preston and had been keeping up with her progress on the website.  Get this kid (under 30) - he works for Apache Corp and volunteers @ TCH every Saturday morning for RMH & is also involved with the Leukemia and Lymphoma Society.    Even better than that, he was going out of town for the weekend and came in on Friday because he was going to miss his Saturday assignment.  When I was his age, I couldn't even spell volunteer.

Anyway, he came by the room, said hi to Presley & Peri & brought her some breakfast that had been donated.  I have always known I wasted my youth - Jarrett just proved it Friday.

Jarrett - Thanks for the breakfast and spending your time doing something very worthwhile.

2.)  Fourth of July --  We spent Independence Day with our friends Debbie & Preston.  They came by TCH around 2:00pm and Preston & I headed out to see "The Hangover".  Guys, if you have 2 hours to spend, spend it laughing your a$$off at this movie.  After the movie, we relieved Debbie & Peri and watched "The Express" with Presley in the room.  Little did I know that Ernie Davis died of leukemia at age 23.  Pres' only reaction was "Wow, he had the same thing as me"

Debbie & Peri-Ann brought back dinner and then we watched the entire fireworks show from room 914.  I have seen fireworks of some sort on every Fourth of July for the past 30-35 years, but I will never forget this one.  I will never forget my beautiful, bald headed daughter sitting cross-legged on the couch in a hospital room, watching the colors above the skyline of Houston.  It was perfect!!!

Also, my favorite band in the whole world - The Blue Johnnies - came out of retirement and dedicated their performance to Presley.  I wish I could have been there!!  Thanks Jones & Sorrels!!!

3.)  Marinol --  So, I have documented that Presley has had some serious problems with nausea throughout her first month of treatment.  Two weeks of true hell were due to C-Diph and we finally got past that once diagnosed.  This block of treatment consists of totally new drugs and we had no idea of her body's reaction to them.  The afternoon after the first dose, she got sick so we gave her some phenagren.  Good stuff but it makes her sleepy and she slept most of the afternoon and evening.
Friday night, we got behind on the sodium tablets so she took about 8 grams of salt before the treatment.  I'm sure it was equivalent to drinking sea water and she got sick again.  So we vowed to get ahead of it for the rest of the treatment.
We were prescribed Marinol during our last stint but it didn't have much effect due to the C-Diph infection.  Our nurse Alicia suggested we give it another shot.

Now, for those of you who don't know, Marinol is a drug derived from THC - a derivative of marijuana.  I have no feelings regarding marijuana usage one way or another, but if it makes my girl feel like a human being again, I will start growing it myself.  So, we give her a dose of Marinol this morning to get ahead of the nausea that usually comes during this time.  Nothing.  She feels goods.  No nausea, and we all watch an EPIC Wimbledon match between Roddick & Federer.
I leave to go home and get clothes for work tomorrow and come back with dinner around 6:00pm.  She has had dose # 2.

Wow - she really is my kid.  She is goofy beyond belief.  She if giggling her butt off and munching down on chicken strips and mashed potatoes.  Then she slams about three cookies and a Dr. Pepper.  It's a miniature version of me @ 3am on a Saturday night after ten beers.  We will probably have to closely control this stuff at home, or she will be calling her buddies and throwing parties while we are at work.

She just received dose 4 of 5 of the Etopiside.  One more tomorrow (Monday) night and then she gets an immune boosting injection on Tuesday night.  If all goes well, they will discharge her Wednesday morning.  Then 2-3 weeks to recover and get counts back up.

All in all, a pretty good holiday weekend considering the circumstances.  Friends, Fireworks and Munchies.

Thanks again for all the thoughts, prayers, cards, gifts, emails and texts.  We are eternally grateful for all you.

7/1/09:  (Update from Alicia Thomas)  My girls and I made a last minute decision to pile into the car at 5:00 a.m. to drive from DFW to Spring to see Presley the day before she starts her new treatment phase.   Jordan was Presley's BFF when they lived in Keller.  They met through the cheer team and spent most weekends at one or the other's house driving us all crazy.  It always amazed us that Presley and Jordan would get so upset at the end of the weekend when they each had to go home, knowing that they would see each other during practice the very next day.  Despite the distance, these two have remained good friends. 

We made our first trip to see Presley in mid-June when she was in the hospital with the salt and stomach issues.  Jordan and I along with my sister Beth and her two girls, Alex and Abby, spent the day with her in the hospital.  Presley was very sick and was not in the social frame of mind.  We spent most of our time visiting with Peri and Eric and being observers of the process to fight leukemia.  It was a heavy battle day for Presley and our role was to keep her weapons loaded with any support she needed - rubbing her legs or back, getting her things she needed, drying her tears and giving her words of encouragement.  The car was very quiet that evening as I drove with Jordan back to DFW.  "Mom.  I was not a very good friend today.  I did not know what to do."  This trip put a face to the disease for us and Jordan was not sure how to manage it. 

Today, we walk into the house at 8:45 a.m. to Presley's famous "Hello" - loud and clear coming from the couch.  She bounced right up and ran over to give hugs.  It was immediate relief for all of us to see that smiley face and listen to her silly ramblings.  And it was in that very second that the disease was non-existent replaced by pre-teen giggles and babbles.  Jordan and Pesley went right back to where they were before ALL with Ashley (15 and turning 16 in 6 days - yes we count) still playing the role of the older sister.

The girls all piled onto the couch and watched TV talking about all of their favorite shows.  Eventually, hunger set in and we headed to Cracker Barrel for brunch.  We ate, played checkers and shopped for candy and silly toys.  We then headed to Michael's craft store for necessary supplies.  We spent the rest of the day turning ordinary duct tape (well, duct tape in lots of unordinary colors) into fashionable accessories such as wallets, bracelets and book marks.  We decorated flip flops with tons of bling.  Ashley led a mani/pedi session with bright colors and polka dots on hands and feet.  Jordan and Presley locked themselves away to watch movies in Presley's room.  We ended the evening with dinner at Presley's favorite mexican food restaurant joined by Peri's close friend, Debbie. 

We left that night to head back to DFW with the same goodbye tears we have always had.  The ride back was quiet largely because it had been a long and tiring day for the girls.  This quiet time was different.  Each of us thinking through our favorite thoughts of the day.  "Mom. Today was the best day.  I know what to do now.  I just need to be her friend." 

6/30/09:  (email from Eric)  Pres had another good day today and is getting stronger and feeling better. She has one more day of normal life until we start the Consolidation I Phase of Treatment.

I don’t think we have told anyone yet, but neither Piper, Peri-Ann nor I met the criteria to be a bone marrow match.  Peri-Ann was the closest matching 4 out of the 6 criteria while Piper & I matched only 3.  This was very disconcerting to me, as I always say Piper is Peri’s kid because of the way she acts.  Doesn’t look that way genetically.  After we received this news, Dr. Redell came by and discussed our new roadmap for treatment over the next couple of years.  We will continue the AALL0031 Protocol with chemotherapy treatment including Gleevec until we are cancer free.  Since we have had early success, she was positive about the treatment.

The news about the Bone Marrow criteria reminded me to thank Alicia for providing the info on the site and thank those who have requested the kit.  If it is that difficult to match your own child or sibling, then the world needs as many donor registrations as possible for Presley and other kids in her situation.

 On Thursday, we go back to TCH and begin Consolidation I.  This is a 21 day course of treatment where the first 6 require hospitalization.  She will be getting another LP (Lumbar Puncture) on Thursday morning and then will be admitted for 5 days of IV chemotherapy.  This is pretty potent stuff and she must be monitored for any extreme side effects.  After completing the chemo, she will receive immune booster injection and then be off chemo (other than Gleevec) for the rest of the days 6-21.

Her counts will again be knocked down but we hope to be out of the hospital within 6-7 days.  She will need recovery time at home and will neutrapenic, so we will keep you updated and let you know about visits, etc.  After Day 21 providing her counts are up, we will begin Consolidation II. 

When we get to Consolidation II, I will give specifics, but now I want to give you a timeline on our Roadmap.  We are only on Day 40 of this journey but are literally barely out of the starting gate.  We begin our second phase of treatment tomorrow but our time line is much longer until we claim her cancer free.  Below are the next blocks of treatment and timelines for each block.

Consolidation II --  21 Day Treatment similar to Consolidation I.
ReInduction I --  21 Day Treatment similar to what she just finished.
Intensification I --  9 Week Treatment introducing new drug and combination of Consolidation I & II.
Reinduction II --  Another 21 Day Treatment.
Intensification II – Final 9 week treatment before we go to Maintenance.

For those of you counting at home, that is 27 weeks of intense chemotherapy, not including time off to recover from each phase.  In other words, her boat is loaded for a while.  Maintenance Blocks 1-4 & 5-12 are 8 week treatment cycles.  These will be less intense the further along we progress but this is still another 96 weeks of treatment.

I tell you this not to discourage you or Presley, but to beg you to continue your thoughts and prayers for her.  Her road is a long one.  Each and every thought, prayer and gesture is immensely helpful and we are eternally grateful.

If you have a moment, please send her a note over the holiday weekend.  She does love to hear from everyone.

Thanks for all of your love and friendship.

6/29/09:  Hey everyone it is me, Presley!!! I will be giving you the update today because the past 2 days I surprisingly have flet a whloe lot better. Now I also have not taken a nap the past 2 days so I been kind of tired but not really, but today I took a nap so I caught up. I am really annoyed with my dad right now because of MICHEAL JACKSON and I don't know if you know I think he is a Super Freak He's Super Freaky Owww. LOL. But now he won't stop singing his song beat it so I have to listen to it 24-7. It gets really annoying. So anyway back to how