Monday, December 31, 2012

Ringing in 2013 with a little Peg

Peg, or Pegaspargase is a Chemo drug that can cause severe allergic reactions and therefore has to be monitored closely.  For this reason we had to head back to Primary's on New Years Eve.  It was a very cold and snowy day in Salt Lake and we were not thrilled to be going back.

Not excited to be getting his blood pressure taken

Playing a game while getting chemo

Getting Peg--no allergic reaction, wahoo!

Getting hooked up for chemo
It took about 3 hours to check in, get Austin's port accessed and infuse the Peg.  Austin made the time pass playing a game on the Xbox.  Thankfully, no allergic reaction or other problems so we made our way back to Grandma's.  We spent New Years Eve with family and had a great time.  Austin didn't feel great and went to bed early.  Only Madison made it to see the ball drop to ring in the new year.  Happy 2013!!!  We are hopeful that it's going to be a great year.

Friday, December 28, 2012

Beginning Delayed Intensification (DI)

The dreaded DI or Delayed Intensification.  We have heard for months about this phase of treatment and how awful it is supposed to be. It's two months of very intense Chemotherapy.  It is split into 2 parts, each a month long.  This first month involves 2 Lumbar Punctures, 2 seven day bursts of steroids,  and 4 chemo drugs: Methotrexate, Doxorubicin, Vincristine, and Pegaspargase.  Of course all of these have nasty side effects and we have been given an arsenal to deal with them.  Our options include Ativan, Zofran, Phenergan, Benadryl, and Kytril for nausea and vomiting.  In addition, Austin takes Zantac twice a day and Septra on Mondays and Tuesdays.  

Austin's meds.  The ones on the left are taken daily.  The ones on the right are as needed for nausea and vomiting.

Our calendar for part one of Delayed Intensification
We made the trip back to Primary's for the first lumbar puncture and chemo.  This is the first time Austin was supposed to get Doxorubicin, or the "red devil" as it is nicknamed because it is bright red.  A possible side effect is heart damage that can be life threatening (that makes me feel so good!) so before the first dose, Austin had to get an Echocardiogram (an ultrasound of the heart), and an EKG that tests the heart's electrical activity.  Austin didn't love the Echo because the technician had to push pretty hard to get a good picture through Austin's port site.  The EKG was quick and painless.  The results of both were good so Austin was given the ok to get the red devil.
Getting an Echocardiogram

Time for an EKG

After the tests we headed up to the clinic to be seen by the Oncologist, have some blood work drawn, and get the low down on DI.  Then we went down to the RTU for Austin's Lumbar Puncture.  Usually Austin doesn't have any problem with the meds they give him and he wakes up hungry and sleepy but happy.  This time he woke up with a nasty headache and he was very grumpy.  He wanted to go home but we had to go back up to the clinic for his chemo.  He came around with an xbox game and some teasing by the nurse.  

Watching TV while waiting for his Lumbar Puncture

Playing the Ipad before his LP

Fighting the medicine--playing until the last second
Dr. Eldridge listening to Austin's heart

Have I grown?

Laughing with Dr. Eldridge

Playing with Sarah, the Child Life Specialist (she has a cold)

Getting chemo and playing a game--Austin
 prefer's a stuffed animal over a pillow.
Austin got the Vincristine and the "red devil" and finally we were free to go home.  We stocked up on Austin's prescriptions before we left and headed back to Grandma's.  We have to stay in town until the 31st when we have to return to Primary's for the dose of Pegaspargase.  This drug can sometimes cause anaphylactic shock so they have to monitor him real close after they give it (again, making me feel good!).  

Tuesday, December 25, 2012

Merry Christmas!

 Merry Christmas everyone!  We had a beautiful, chemo free Christmas.  We were so happy to have a break this week from hospitals and chemo.  Austin is feeling great right now.  We were able to relax and enjoy spending time together.  We went to Tuachan and saw santa and the live nativity and enjoyed hot chocolate and the lights.  Austin surprised us by asking Santa to take away his cancer (cue mom tears).  Santa was so great and kept his cool and talked to Austin and then gave him a big hug.

Enjoying hot cocoa at the live nativity

Christmas Pjs

Merry Christmas from our family to yours!

Wednesday, December 19, 2012

The Dentist, Snow, and a Haircut

 A trip to the dentist...such a simple thing for most kids, but when you have cancer it becomes a much more complicated event.  If your immune system isn't working properly, the simple teeth cleaning can cause an infection that would be hard to fight off.  Because of this, we had to have Austin's blood work checked again.  So the day before his appointment, the home health nurse came back and accessed Austin's port and drew the necessary blood.  Thankfully, his ANC was 2000, platelets 250, and Hematocrit was 32.  This is more than enough for the dentist.  Just in case though, the Oncologist ordered a preventative dose of Amoxocillin in case any nasty bugs decided to get in Austin's bloodstream.  I will never again complain about going to the dentist.

Getting his Teeth Cleaned

Waiting for their turn to see the Dentist.  

 The visit went well.  No cavities!!  The Dentist did pull out a very loose tooth that Austin has been wiggling for a while.  No fun but maybe the Tooth Fairy will bring something extra for all the trouble.

After the excitement (and pain) of the dentist, I decided we needed a little fun.  It's just a few days until Christmas and I know that the chances of having a white Christmas in St George are basically none, so we decided to go find some snow to play in.  We drove about a half hour North to Pine Valley, a beautiful little town in the mountains.  It was full of beautiful white snow that was new.  The kids had fun running around in it.

Looking good!

Making a snow angel

Jaxon didn't really know what to think of the snow.

Austin's hair grew back a little from the last time that we buzzed it, but it grew back in very fine and wispy.   Recently, it began to fall out again and it wanted to stand straight up all the time.  So we decided it was time to buzz it off again.  My sweet little boy's bald head is so heartbreakingly cute!


Tuesday, December 11, 2012

The End Of Interim Maintenance 1

Austin had a really rough week after the last round of Chemo.  He had nausea and vomiting for three days and was miserable.  The Oncologist wanted him to get a fluid bolus and some IV Ativan, but when the Home Health Nurse came to access his port, she poked twice and couldn't get the needle in the right place. The second poke was so painful that Austin refused to let her try a third time.  I agreed to let him go 24 more hours and if he wasn't improved we would try again.  The next morning Austin jumped out of bed and proclaimed he was totally fine and ready to go to school.  I know he was pretending to feel fine just to avoid being poked again, but after making him promise to call me if he threw up at school, I agreed to let him go.  He managed to keep enough fluid down that finally he began to feel better.

It was a very frustrating few days so I talked to the nurse at the Oncology Clinic in Salt Lake to see what we could do to prevent the extreme nausea and vomiting this time around.  So game plan in hand, we were ready to complete the last round of chemo in Interim Maintenance 1.  Austin was really anxious and worried about having his port accessed.  Thankfully, this time the nurse got the needle in the right place with just one poke.  His labs were drawn and sent.  His ANC was 1800 so we were given the go ahead for chemo.

Enjoying a smoothy

Chocolate chip pancakes before Chemo, not too shabby
 Austin and I celebrated the successful morning by going out to lunch.  Austin chose chocolate chip pancakes and was very excited when they showed up, each one bigger than his head.  Of course he couldn't even finish one of them, but they were yummy!
Smiling through the mask
 We headed over to Austin's Pediatrician's office to get his usual checkup.  He was 43.1 kilos this week, down another kilo.  I can tell he is feeling better since he has lost most of the steroid weight.  The visit went well and we then headed to the Peds floor for chemo.
Playing with the stethoscope, I instructed him to let me know if he heard my heart stop.

Getting assessed by nurse Justin
Since Austin's port was still accessed, getting the chemo was a breeze.  He got a new anti-nausea medication, called Kytril, that hopefully will help avoid the misery of throwing up for days.  The plan is to leave Austin's port accessed so I can administer his medications.  I will give him him a fluid bolus for one or two days depending on how he is feeling, as well as the Kytril, Ativan, Zofran, and Benadryl if he needs it.  It's a lot to keep track of and I am again grateful for my nursing background that gives me the basic knowledge of all of this.  I feel for those parents that are thrown into this cancer world without any preparation.  I suppose they just learn quickly.   I just hope all this nonsense helps and Austin feels better this time around.
Our arsenal--the balls are full of Normal Saline that infuse over 2 hours.  

Feeling crappy and getting a bolus
 So we are done with Interim Maintenance 1.  Wahoo!  One more phase down and one step closer to being done. We now get a 2 week break before starting Delayed Intensification on the 28th.  Conveniently, this break falls over Christmas so we are very excited to enjoy the holiday without worrying about Chemo.  
We get an ornament every year that reflects the year we have had.  This was an obvious choice for 2012