Inpatient Chemo

Haley has now completed 3 of her 4 inpatient chemo treatments . . . so far so good.  She was supposed to go into Primary’s the Friday before Thanksgiving but due to low platelet counts, they postponed her treatment for three days.  The worst we have seen so far from these treatments are the “never-ending nosebleeds.”  The doctors have assured us that she will not bleed to death but they are disturbing nonetheless.  One occurrence did land us in the ER for about five hours after one lasting about 1½ hours.  Doctors entertained the idea of cauterization and “packing” but ended up leaving the blood clot in place to allow whatever blood vessel she broke in her nose to heal on its own. If any of you have seen the movie “She’s The Man,” we have gotten some very creative ideas of how to stop these nosebleeds from that movie . . . :) . . . We will let you watch the movie if you haven’t already so you can get a visual . . . oh my . . . it works surprisingly well! 

Dari was unavailable that week so Jessica accompanied Haley for her weekly stay.  Thanks Jess!!  She was supposed to be inpatient on Thanksgiving Day, but the doctors allowed us to take her home and set us up with an IV fluid kit so she could be home for Thanksgiving . . yay!!  We did decide to decorate for Christmas early and despite her low blood counts, Haley was unbelievably energetic.  At the crack of dawn she was packing bins up the stairs and spent nearly all day decorating.  We can thank her now for our very festive and winter wonderland of holiday cheer she has spread through the house, elaborately decorating several rooms of our house.

Dr. Spraker would not be happy with us if she knew we took Haley to Breaking Dawn . . . .  We were very careful to bundle her up and did bring the Clorox wipes but our race to see the movie trailers and Haley’s refusal to miss them . . . needless to say we left the Clorox wipes behind. 

One more inpatient chemo treatment until we move on to a two-month phase of weekly treatments similar to the induction phase . . . stay tuned and we hope you all had a very Happy Thanksgiving!!!

Month Five

We are half way through inpatient chemo. Yay!  Haley wants to share her thoughts on this phase in her own words.  Let me just say that she designed her own Halloween costume and I loved it!  Haley (Dr. Death) and Dari (Dr. Doom) gave the little trick-or-treaters quite a scare (hehe).  No Cancer was going to spoil her favorite holiday! 

I (Haley) have finished my second round of Methotrexate, which is this bright yellow Chemo treatment that I make fun of with Dari. Curiously, this chemo has given me different side effects both times. The first go around I had extreme nausea... which I don't exactly remember since the nurses had me pretty much sedated. Apparently I was throwing up a whole lot, but I don't remember that Saturday at all. This week hasn't shown much. It did make me really tired at the hospital. It knocked me out. I remember up to five dreams I had in one night. I will have to do two more in-patient stays and get Methotrexate, which I am kind of nervous since it could give me any of the side effects, but they don't last long. Each time I know I will get the mouth sores. I've gotten them both times before, but they don't last long either. They also won't be as bad as they were in July because they aren't part of the cold sore virus that I had. It’s just a little gum irritation . . . stay tuned . . .

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 . . . 
<<<<<<




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. 

July 18, 2011

Today Haley is still in the ICU at Primary’s.  Her fever has gone down but they are trying to clear up her throat and mouth sores so it will be easier for her to eat and swallow.  She is in good hands there, all of the staff and nurses are awesome.  Plus, as always, she is accompanied by her closest and dearest friend in the whole world, her cousin Darianne. Hey, Dari, can I just tell you how much I love you and how I would NEVER have gotten through this without you!!!  She always has the right thing to say and turn my tears to laughter.  I don’t know how she does it.  She had me and Haley laughing so hard yesterday we were in tears . . . planning Haley’s prom night . . . Oh my, Dari, you are a character.  Thank you for taking care of Haley for me when I am not there. 

There are no words to express how unbelievably amazing our neighbors are.  Our very sweet neighbor, Kiersten Price, is putting together a fund raiser and bake sale for Haley on July 23, 2011 (Fund Raiser Link). It never ceases to amaze me how people rise to the occasion in time of need.  Thank you thank you Kiersten for putting that together.  Wow, you guys are so awesome!!!!

July 17, 2011

  Haley has now been through three chemo treatments and is struggling with some of the side effects. She has lots of mouth and lip sores, is having a hard time eating and swallowing and she has not been feeling well at all today. She took her temperature a few times, . . . 99.5, then 100.2, then 100.6, so . . . back to the ER we go.  We are now at Primary's waiting to get her labs back to see if she needs to be admitted for the week.

July 15, 2011

  Today's Dr. visit was bitter sweet.  Do you want to hear the bitter or the sweet?  Let's start with the bitter.  A normal body's ANC (Absolute Neutrophil Count) levels are 1.8 for normal immune function, Haley's levels are at .1, which basically means that she has no immune function. The slightest cold or flu could land her in the ER.  Okay, that's pretty bad so let's talk about the good news. When Haley was admitted into Primary Children's the percentage of cancerous cells in her bone marrow was 91%.  Yeah, I know . . . that's crazy!  Today . . . after only two rounds of chemo . . .  the percentage of cancerous cells in her bone marrow now reads 1.8% YAY!!!  That means her treatments are working and killing off all of the cancer cells. Sweet!!!  Her blood and platelet levels were also good so no infusions.  More good news!   Brett and Liz Godfrey brought us some dinner, lasagna, salad and french bread.  Our favorite.  Thanks Brett and Liz!!!

July 12, 2011

  Today Haley experienced her first “fit of rage” against life and God.  The doctors warned us about this.  He said to blame it completely on the steroid medication she is taking so that is exactly what we did.  Liz Starley saved the day by bringing us dinner for the night.  Tami was functioning on only a couple of hours of sleep so that was sooo sweet of her.  Thanks Liz!!!  Another very sweet neighbor, Barbara Hiatt, brought Haley over a gift bag full of treats and money for movies.  Thanks Barbara and family.

July 11, 2011

  Today we got a taste of what our lives might be like for the next two and half years.  We wound up at Primary Children’s ER last night until about 3:00 a.m.  Then back up for work today at 6:30 a.m. You know, I have never been a coffee drinker but I drank three cups today. 

  About 8:00 p.m. last night, Haley started to feel a tightening in her chest and was having difficulty breathing. At 9:30 p.m. when her symptoms worsened, we called the on call Oncologist at Primary’s who said “bring her in”.  So that’s what we did.  After chest x-rays and an EKG, they discovered she has some type of air pocket in the muscle in her throat or chest area.  There is a very big name for this and I was too tired last night to remember what it is called . . . but it common in asthma patients because it can be caused from heavy coughing or vomiting.  Since Haley has done neither of these things, we are instructed to bring her back if it gets worse.  It should dissipate over time.  I guess life could be worse . . . masses could have been forming around her lungs, so we are thankful it is not that.  I suppose there is always something to be thankful for!

Leaving comments

  Leaving comments on Blogs is what makes blogs interactive. Just like facebook, if no one ever posted anything on your facebook wall or accepted you friend requests, facebook might not be all that fun. Many people want to leave comments and everyone wants to read them, so if your here, leave a comment. There are many who have posed questions about how to comment on Haley's blog because they have never done it before. Follow these steps and it is quite simple.

1. Click the comment(s) link that is at the bottom of each and every post.

2. Type your message, and you know what they say, if you don't have anything nice to say, don't say it at all :)

3. Just choose Name from the drop down menu and type your name.

4. Last you will be taken back to your comment where, to prevent SPAM comments, you will have to re-type some letters that a small box will ask you to type. Once you type those letters, Submit your Comment and wallah, your comment is sent.

July 10, 2011

  Today Haley received a huge teddy bear named "Courage" from Paul and Kim King (Dawayne's Uncle and Aunt).  Thanks guys!! Haley loves him. He is her protector bear :)

July 5, 2011-July 8, 2011

  Haley was released from Primary's and she is now resting comfortably at home :) She has since had another round of chemo, bone marrow test and spinal poke to test to see how effective her treatments are. We will get those test results back next week. The doctors and nurses told us not to go nuts about cleaning but, of course, we didn't listen. Mom with Grandma LuAnn washed sheets, walls, carpets, scrubbed bathrooms installed sanitary stations throughout the house and reminder posters in all of the bathrooms and front doorway to "wash hands after entering and before exiting the restrooms."  They wiped the car down with Lysol wipes before bringing Haley home and the nurse said "what did I tell you about going nuts", hehe.  Can't help it :)  We watch lots of movies and stay home a lot so not too much has changed in our lives.

  Huge thanks to the Cobble Creek 2nd Ward for bringing meals all week and all of the love and support they have provided!!  Haley also wants to thank Davey (Dawayne's Cousin) for the Kindle he got her. He loaded it with over 1600 of Haley's favorite books, WOW. That will keep her busy. :) Thanks to Atria (Dawayne's work) for the huge popcorn bucket of treats and Netflix gift cards. What an unbelievable support group she has to help her get through this!!!

Day 5 Since Diagnosis

   Today we woke up early. The nurse took Darianne, Tami, and Makayla through some common procedures to follow when Haley gets home. When she gets home she will have to be as clean as possible. She will also be on a certain type of steroid called Dexamethasone. This acts as an anti-inflammatory  and immunosuppressant. It is 20 to 30 times more potent than the naturally occurring hormone cortisol and 4 to 5 times more potent than prednisone, so she will be eating quite a lot. She will need to eat plenty of calories and protein. She will have chemo treatments every Friday though the schedule could fluctuate. There are many side effects but only a few may occur for Haley. Another tid bit, through testing, the doctors have found that she doesn’t have any leukemia in the brain which is a huge bonus.

   Also today, Haley had the whole volleyball team from Copper Hills High School come and visit her including, Diana, Nina, Nahomi, Elise, Jessica, Aly, Whitney, Brittney, Kalah, Sila, Jackie, Amber, and Marnie. They made her a big poster card and gave her a big puppy. She really loved seeing all of the girls and she loves everyone of you.