Summer Fun

Austin has felt great this last month.  He has had lots of energy.   We are enjoying all the summer fun in St George.  Such a relief since last Summer really sucked because Austin didn't feel good much of the time.   He and Madison went to Camp Hobe, a camp in Tooele for kids with cancer and their siblings.  I worried all week because they were so far away, but they had so much fun and can't wait to go again next year. Ausitn's checkup and monthly labs went well.  His ANC was 1700, Hct 35.6, Plts 250 and weight 44 Kg.  He faithfully takes his nightly pills without complaint.   Did I mention how much I love this kid?

Playing in the river at Zion.  Austin, Madison, Jaxon, and Logan

S'mores anyone?

Making s'mores

At Shaylyn's High School graduation

5 dirty, happy cousins

At Camp Hobe

Cheese!

Look Mom!  My hair grew back!

Riding the train to Salt Lake

Getting his checkup

Talking to Dr. Marsden

Jaxon had to get a mask to match Austin

A Month into Maintenance and the End of the School Year

We have been in Maintenance for a month and so far Austin has felt amazing.  He has had more energy and felt better than he has since he was diagnosed.  His hair is growing back and he has lost the black circles around his eyes from the Chemo.  Since we haven't had to go to the doctor or hospital or get labs checked, it has been easy to pretend that all of the past 9 months was just a bad dream and that the Leukemia never existed.  The only reminder of our reality is Austin's nightly pills.  Austin takes 3 1/2 pills on Monday and Tuesday, 12 pills on Thursday's and 2 pills every other day.  I have to keep a calendar posted in our kitchen to help me remember which pills to give when.  Thankfully, Awesome Austin doesn't have a problem taking pills and he swallows them nightly without complaint.  He hasn't had any side effects from these pills even thought they are still Chemotherapy. 

Austin's Thursday Chemo

So all is hunky dory right?  Well, it certainly is the best it has been in months.  I am cautiously hopeful that this is the way it will be from now on.  I am told that relapse during maintenance is extremely rare, but being the paranoid nurse/mom that I am, it's been on my mind a lot lately.  I think I have become used to worrying and don't know how to relax completely.  Part of me feels like I have been running a marathon at full sprint for the past 9 months and though I haven't reached the finish line, I have been told to slow down and walk.  It's feels like whiplash, for lack of a better description.

Don't get me wrong!  I am very grateful that Austin feels so good!  When people ask me how he is doing, I have nothing to say other than that he is great.  That is just fine with me.  It's just a new way of thinking for me.

The last month has gone quickly as we have been very busy with the end of the school year activities.  Usually a mom is bummed about school getting out for the summer, but this Mom is thrilled.  It has been a very tough year and I need a break.  I am so proud of Austin for making it through this year and completing 3rd grade.  Back in the fall when Austin missed so much school I wasn't sure he would make it.  I was worried he would get too far behind and have to be held back a year.  I credit Austin's amazing teachers for being understanding and helping Austin catch up when he was absent.  It doesn't hurt that Austin is an excellent student and of course I think he is absolutely brilliant (but I may be a little biased).

Today Austin had his monthly checkup and CBC.  His ANC was 1200, the same as it was a month ago.  His Hematocrit was 36, the highest it's been since he was diagnosed.  No wonder he has so much energy!  He was cleared to attend Camp Hobe in June with Madison which will be a lot of fun.

So bring on Summer!  We plan on having lots of fun and thinking about Cancer as little as possible.

Starting Maintenance!!

We got on the road again and headed for Primary's.  This time there was some excitement in the air because Austin would be starting the Maintenance phase of his treatment.  This is the phase that we have been looking forward to since he was diagnosed back in August, 8 months ago.  He will be in this phase until his treatment is completed on November 5, 2015.  Way back in August, we agreed to let Austin be a part of an on-going research study to improve cancer treatment for kids.  The study isn't really for Austin, his treatment has already been set.  The research is for future children and hopefully it will make their treatment easier.  We feel strongly that this is so important because the only way that Austin will beat Leukemia is because thousands of children have come before him and have fine-tuned the treatment plan that he is on.  We hope that Austin's participation will help future kids beat this monster too and maybe have an even easier time than Austin.

Checking in at the Oncology clinic.  Weight was 44.4 kg, ANC 1200

In a good mood, waiting for the doctor

Me and my buddy.  We are smiling today, excited for Maintenance

There are 4 arms to the research study.  A, B, C, and D.   The A arm is the standard treatment plan with no changes while B, C, and D tweak the interval and dose of the medications.  These meds are Dexamethasone (steroids), and Chemo drugs: Methotrexate, Vincristine, and Mercaptopurine.   After signing the paperwork giving our consent for Austin to be on the study, they had a computer randomly pick which arm Austin will be on.  While we waited to find out which arm, another person asked if we would allow them to collect some spit from us to use in DNA studies.  We thought this was funny because it ended up being a lot of spit!  It took us a while to fill up the vials.  Of course we turned it into an opportunity to take silly pictures.

Collecting spit and feeling a bit silly

Who can fill the vial first?  (Austin won)

A bad time to get a dry mouth!

Look out, Austin found the label maker!

This is what happens when Austin is bored and finds the label maker.

 Finally, the doctors came back and told us that Austin was randomized to arm C of the research study. It is actually the most convenient (at least for us) of the arms because we only have to travel to Salt Lake every 3 months instead of the twice a month routine that we have been doing.  That is HUGE!!!  So every 12 weeks, Austin will get a back poke with chemo in his spine (Methotrexate), and IV chemo in his port (Vincristine).  He will take steroids for 5 days every 3 months.  Additionally, he will take oral chemo Mercaptopurine daily and oral Methotrexate every Thursday.  So bottom line, lots of pills but much less IV Chemo.  He will have a CBC checked and see the doctor for a checkup at least once a month but from here on out, his treatment will not be count dependent.  FINALLY we can plan our lives and know what we are doing more than a week in advance!  Hooray!

So here's to making it this far, to finally getting through the roughest part of treatment (we hope!).  I am so proud of Austin for making it to this point, for putting up with all of this nonsense.  I don't think he appreciates yet how important all of this is, that it is literally saving his life.  He just knows that it has to be done, the hoops have to be jumped through. He has jumped through with smiles and his wonderful easy going personality intact.  I can't express in words how much I love this kid.  He is my hero, my inspiration, my Awesome Austin.  Keep going Buddy!  You WILL beat this!

Finishing Interim Maintenance

Austin has felt good this week.  No more fevers of unknown origin.  He had fun playing the violin and dancing and singing in his third grade Spring performance.  He is a very charismatic guy and loves the performing arts part of his school.  

 Austin's ANC was 1600 this week so we headed back to the Peds floor at Dixie for Austin's last round of chemo for this phase.  Austin was actually excited to go this time because he had a plan for attacking Child Life Specialist, Michael.  Michael got Austin several months ago with silly string.  Since then, Austin has been thinking of getting even.  He received some silly string in his Easter basket a couple weeks ago and knew just how he wanted to use it.

 Austin hid the silly string under his blanket and when Michael came in to say hello, he attacked!  Poor Michael got the entire can of silly string on his head.  Austin just laughed and laughed. Thanks Michael for taking it!  Of course now Austin is worried that Michael will get even, but that's the risk you take when you start war!

Chemo time

So now we are officially done with Interim Maintenance 2.  Wahooo!  Austin now gets two weeks off before starting the long awaited Maintenance phase.  

Chemo and a Fever

This week we headed back to Salt Lake for another Lumbar Puncture and Chemo.  Austin's ANC was 2700.  He was feeling good.  The visit went smoothly. We learned more about Maintenance and what our schedule will be like.   Instead of chemo every 10 days it will be once a month and LP's every three months. We have been looking forward to having a less hectic routine and less trips to Salt Lake.  Dr. Wright also gave us Austin's last treatment date--November 2, 2015.  Seems like so far away!  I keep telling myself that the time will pass no matter what.  We will get there one way or another right?  

Accessing his port

Being checked out by Dr. Wright

Sleepy time--recovering after his lumber puncture

Love this crazy kid!

Too busy playing to notice he is getting Chemo

Getting Chemo

Chemotherapy

Passing the time

 We returned home safely and went back to the week.  Austin initially felt good and went to school on Thursday.  He called me at 12:00 and asked me to come get him because he felt nauseous.  He had a low grade temp of 99 and wasn't able to keep anything in his stomach.  By 6pm he still didn't want to eat or drink and his temp was 101.3.  In cancer world, that means a trip to the hospital.  Because Austin's port is a centrally placed IV, there is always a risk for infection.  When there is a fever we first have to rule out a port infection because that could be life threatening.  So I called the On-call Oncologist at Primary's to let them know that we were headed to the Peds floor and we got in the car.  

Fever 101.8  Not feeling good

Getting Rocephin

I feel yucky!

It was so hard to see Austin feeling so bad.  I hated to make him get his port accessed again because he was still bruised and sore from being accessed 2 days earlier.  I have never felt as helpless in my life as I have when Austin is suffering and I can't fix it.  He looks at me with his big beautiful eyes begging me to make it go away and it breaks my heart to not be able to do anything.  

Getting a bolus and sleeping, finally looks comfortable

So Austin's port was accessed, blood cultures and labs were drawn to see if there was an infection, a bolus of fluid was given for his dehydration, and IV antibiotics were started.   Fortunately, Austin's labs came back great.  His ANC was 3200 so we were sent home and told to return the next day if his fever came back.  The next day Austin's temp hovered around 99 but didn't get any higher so we were in the clear.  We probably won't know what caused the fever but I was very happy to see Austin start to feel better.

Happy Easter!

Happy Easter everyone!!!  We had a nice, quiet holiday with just our family.  The kids had fun at the St George Easter Egg Hunt as well as coloring eggs and getting goodies from the Easter Bunny.  

Easter egg hunt!

Coloring eggs