Month Four

It has been over three months now since Haley was diagnosed with A.L.L.  We are getting the key terms down and are pretty familiar with the process of things including weekly clinic visits that consist of usually a blood transfusion, chemo treatment plus a spinal tap.  These weekly visit have pretty much dominated our Fridays for the last two months.  We had a bit of a scare last weekend.  Haley’s little sister Aysia, was diagnosed with Strep Throat. Trying to keep a five-year-old secluded from Haley and the family and keep a mask on her when she is not, was quite an ordeal.  Two days after Aysia was diagnosed, Haley started to get feverish and was not feeling well at all... at three in the morning when her fever started to rise, we had keep a close watch over her the rest of the night checking her temperature often.  By mid-afternoon the following day with no signs that she would fight this fever on her own, we packed for an inpatient stay at Primary’s.  Best Friend/Sister and Life Saver of all Dare Bear was there to keep Haley company at Primary’s.  Yay! Dari you are the absolute best . . . /cry cry. 

I would have to say that we have handled all that has been thrown at us quite well but I (mom) experienced my first panic attack on Friday terrified that Haley had caught Strep or pneumonia which is running rapid at Hayden Peak where all of her siblings attend . . . ugh.  Luckily her fever was a result of dehydration and quickly came down at Primary’s after Tylenol and fluids (so only a three-day stay . . . yay again). 

The next 8-week-block will consist of 4 four-day inpatient treatments every other week including a 24-hour IV treatment.  Side effects include more mouth sores which Haley is not looking forward to.. ugh... hope she doesn’t lose more weight she is holding at 94 lbs. We are told lots and lots of popsicles help to keep the mouth cold to restrict the blood vessels keeping less IV treatment from entering the mouth.  That’s the theory so that’s what we shall do.. Stay tuned. 

Consolidation

   We are now into the third week of “Consolidation Phase” of Chemo.  Apparently this stage will last approximately 8 weeks and heavy doses of chemo are given much like “induction phase”.  The side affects from this stage are starting to rear their ugly head.  Nausea is setting in in full force.  Haley had already lost a startling 33 lbs during the “induction phase”, which we now refer to as the dark days, so it is difficult for her to gain weight when she can’t keep anything down.  (She fits into Kayla’s jeans, crazy, I know, Kayla just turned 11 last month . . .eek . . .)  This is still nothing compared to the dark days . . . but then again we are only into week 3 of consolidation . . . stay tuned . . .

Haley's Family

The best and most beautiful things 

in the world cannot be seen or

even touched.  They must be 

felt with the heart.

Phase 2 Begins

After 28 brutal days of chemo treatments and every side effect you can image, Haley has successful completed the ”Induction” phase of her treatment. It is unbelievable that we have made it over a week without having to go to the ER  . . . yay!  It has been a rough road at home though.  She is on an IV antibiotic that we hook up every 8 hours and it runs for about two hours.  The whole thing is quite a process . . . a sterile process . . . and it is a little bit nerve racking having to sanitize the lines and syringes and making sure the tips never touch anything and stopping her IV as soon as it is done to prevent air getting in the line and her port clotting.  It has been very stressful to say the least . . . whew . . . now we know why they call it a marathon.  I feel like I run one every single day.  When we brought Haley home from the hospital on Thursday her ANC was 400 she needs 750 to start phase 2.  This morning the nurse came and drew her labs and we just received a call from the doctor a few minutes ago.  They are shocked . . . Haley’s ANC is an unbelievable 3100 . . . wow!!! Normal is 1500-7000 so she is midrange normal.  Doctors can’t believe it.  So she will start phase 2 full board tomorrow.  We are not sure what phase two entails.  More details to come . . .

Last Week of Induction

We are rounding the corner for the last stretch of “induction phase” during treatment.  This is probably the hardest phase because no matter how sick or how low the “ANC (immune system)” counts are, you still plow through with heavy doses of chemo and Haley is really suffering through the side effects.  During the time her “ANC” was the lowest, she contracted the cold sore virus, which if any of you have ever suffered from a cold sore, it is miserable and for those immune compromised patients, well it is about 100 times worse.  This virus has kept her from eating and drinking for about 4 days now.  It was not until last night that her fever finally broke and her counts were back up to 500 so she can start fighting the virus on her own.  We are hoping that today she will start eating on her own so they do not have to use a feeding tube.  Other side effects she has suffered is bloody noses and nerve problems in her shins and finger tips, mild in comparison to the cold sores.  Yesterday was a good day because she was coherent and most of what she said made sense.  She had very little recollection of the last three days.  The mixture of her sleep aid and pain medication did cause some hallucinations, spiders on the walls, flies coming out of her cup, that sort of thing.  To make matters just a little bit worse, her closest and dearest friend, Dare Bear is down with tonsillitis.  I know right??  Get better soon Dari!! J

July 24, 2011

Where did we leave off . . . okay since our last post, we took Haley home from the hospital.  We were so excited because we had a big surprise for her.  While Dad Dawayne is on the road with his band, we converted his studio into a livingroom for Haley, she pretty much has her own apartment now in the basement because it is equiped with fridge, microwave, food cabinet, HD TV, the works.

  She said it was more than she could have ever hoped for.  Now when she is quarantined in the basement, she will be well entertained.  I moved her piano down to her livingroom also so she could still play.
 
  So we are getting ready for her to be discharged from the hospital and I (mom) ask the nurse when they are going to take her tube out and de-access her port . . . looking at me funny she said . . . "oh we are leaving her accessed because you will be giving her antibiotic injections every 8 hours" WHAT!!! Someone forgot to mention that to us so we had to stay at the hospital for a few more hours to be trained on how to take care of an accessed port and inject antibiotics, SCARY!!!  We stayed up until 11:00 p.m to get more training from the home health nurse.  I would have to say me (mom) and Darianne did a pretty good job.

 

  Saturday was the "Hope for Haley Bake Sale" put on by Kiersten Price and Liz Starley.  Munchkin Radio Station was there and there were little tents set up for baked goods, quilts, jewelry and raffle tickets.  It was a huge success.  So many people came to show their support.  Aaron Medford (Haley's uncle) came and purchased a quilt, Val and Dave Jeffs came, tons of people from the ward and neighborhood.  I wish I knew all of their names. 
  
Ben and MaryAnn barbequed hotdogs for all those that came.  Grandma LuAnn made nearly 150 cinnamon rolls and every single one of them sold.  Oh my, that is crazy.  I was expecting to come home to a few trays of those.  No such luck :)  Thank you, thank you for all you that came and those of you that participated to make this event memorable.  We are so lucky to live in such an awesome neighborhood.

  

Only a couple of days after being home from the hospital Haley started to feel a little bit dizzy so we took her temperature on three different thermometers all reading 101.7.  Back to the ER we go.  After Tangled and Lord of the Rings we finally got back up to the 4th Floor, ICU.  We love the 4th Floor doctors and nurses.  They are so attentive up here and we have an awesome view of the 24th fireworks. Yay!!!  See, there is always something to be grateful for.  Nurses that bring really good pain meds, effective sleep aid and a room with a view :) 

July 19, 2011

  Well, the shedding had become a little too much for Haley to deal with so today, me (mom), Haley and Darianne had a little hair cutting party. Haley was in an amazingly good mood. She pretty much let me and Darianne go hog wild with our crash course in hair styling. We started with the “Eva Mendes look” long layers . . . 
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Haley has the thickest hair ever. She easily pulls off this look.

Then to the “Selma Blair look”                                      >>>>>>




 This style made her look about five years younger.  How cute!

To finally reach “GI Jane status” 
<<<<<<<


Yes . . . she is ready for combat!

 That was sooo fun . . . I was filming a lot of the event and we were all laughing so hard that I could hardly hold the camera . . .  Haley is an absolute doll and has the most perfectly cute round head. Not many people can pull off the “GI Jane look” but Haley can get away with anything.  She is beautiful inside and out.