Friday, April 26, 2013

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!

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