Delayed Intensification (DI-1)

Haley is three weeks in to DI-1 (first phase of delayed intensification).  We have been told that her blood counts will drop and that she will be very sick.  Thus far, we have seen none of this (knock-on-wood).  As a matter of fact, this month, Haley has had more energy than she has had in the last 7 months.  The doctors are a little baffled.   Haley hasn’t missed one of her brother’s basketball games, has been to the movies three times and is the first to volunteer to drive her younger siblings to their activities.  We have seen some rollercoaster emotions from the steroids but even that, Haley hides her unexplained anger and irritations pretty well.  I look at her, and I swear she glows.  She is a true gift from God. 

My heart swells with gratitude for all the people that make our lives possible.  My sister, MaryAnn, Haley’s aunt, has been our saving grace.  When Dawayne was on the road for four months, MaryAnn quit her job to come and live with us during that time so Haley and her younger siblings would be cared for.  Regardless, of whatever troubles Mary is having in her own life, she is at my doorstop every Monday morning at the crack of dawn and spends the whole week at my house cleaning, cooking, caring for Haley and the baby, and basically makes it possible for our lives to function.  Even after Dawayne got home in October and started working full-time, my sister has remained our children’s full-time nanny.  Mary, words cannot express my gratitude and love for you.  We have always been close singing and playing the guitar together but I cannot tell you how much you have saved me these last seven months. /cry/cry.  You are absolutely the best.  I am also extremely thankful for Jessica Silotti, Haley’s closest friend.  I have called on her many times to run Tyler to his practices and games, grocery stores runs, she has come to my house and helped clean and accompanies us to Haley’s Dr. appointments.  Thank you thank you to both of you!!! You are truly my closest and dearest friends.

 January 31, 2012 starts DI-2 (second phase of delayed intensification).  A whole new set of treatments are administered so will be prepared for those side effects.  For now, we are thankful that Haley is feeling well and able to resume a somewhat normal life! Stay tuned . . . .

INTENSIFICATION

Haley has successfully completed her two-month round of inpatient chemo treatments ... whew... Next up is “Intensification” starting January 3, 2012.  Eight weeks where they break out the big guns. High doses of weekly chemo treatments where scary sounding drugs will be administered like Doxarubesin, Pegasparagine and Vincristine... the sprint at the end of a marathon before the finish line.  In our case, we are looking forward to reaching “maintenance” where life should resume to somewhat normal.  Treatments will be reduced to monthly... there will be fewer times of rock bottom counts and no immune system and a curling iron and blow dryer may prove useful again. :) Stay tuned for updates.  For now, we will enjoy the calm before the storm... We hope you all have a very Merry Christmas!! 

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.