Back at it!

After two weeks of enjoying the perks of having no chemo, we were back at it today.  Last week Nico’s counts were too low so chemo was delayed one week.  (The week before last there was a scheduled break in chemo.)  Today his counts were back up and he received the V and C out of his VAC chemo.  The A, which stands for dactinomycin, is not administered during radiation nor for six weeks afterward.  Nico will be six weeks post radiation on Friday but to be on the safer side our oncologist is skipping this dose for now and it will get tacked on at the end of the protocol.  Apparently, this particular chemo drug can intensify radiation side effects and nobody wants that.  The C, or cyclophosphamide, requires extra hydration, monitoring and a medication to help protect the bladder so an overnight hospital admission is required during this chemo.  So Nick and Nico are currently at BCCH.  I left earlier this evening with V and Nali and we will go pick them up tomorrow.  Poor Nick started coming down with a cold Friday evening.  Despite trying to rest this weekend he still was feverish and feeling crummy today.  But that isn’t stopping him from doing what needs to be done.  He is amazing.  Prayers that he feels better very quickly and that the rest of us dodge that bullet.

We also want to thank everyone who ordered a potholder/coaster from Nico.  So far he has sold 16 since I made that post.   He decided to donate $5 from every sale toward pediatric cancer research which means in total he has now raised $90!  For those who didn’t see the original post on social media this is what I’m referring to:


He has slowed down his production some but he still has a small inventory of potholders if anyone else is interested in ordering any send me a message.  Most of the first batch of orders were mailed out last week so hopefully those will arrive soon.  Please let me know when you get them!  Oh and maybe you could post a picture of them and use the hashtag #teamnicocourage so we can show Nico where his creations have ended up.

Nico gave me one for Mother’s Day and I use it as a coaster on my night stand. ❤

When Nico started radiation, Nick developed a monetary reward system to help keep Nico positive.  One dollar everyday for radiation and .25 cents for each syringe of fluids, nutrition or meds that we gave through his NG tube.  Needless to say, he has saved up a bit of money and this past week he was able to help pay for (we paid half and he paid half) a new (to him) bike!  Nick found a used kids Trek mountain bike on craigslist last week which Nico is now the proud owner of.  It’s his first bike with gears and hand brakes.  He loves it and really enjoyed getting to use those lower gears to get him up the steep driveway!

Hopefully he will feel well enough to get back out there and ride that bike around some more once he gets back home tomorrow.  It’s so wonderful to see him outside and active, enjoying his favorite things.  We have much to be thankful for, including everyone who is following along this journey with us.  Oh, and we’ve noticed the redness in Nico’s eye has gone down tremendously!  It’s looking so much better and we think it hasn’t been watery as much lately. Thank you for your prayers!  ❤

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