Back in the Saddle

Today we are at clinic for a spinal tap and two chemo drug infusions.  Fionn only has to have spinal taps every 3 months in Maintenance.  This might still seem like a lot, but it's way better than the weekly spinal taps he was having for awhile at the beginning of treatment.  Every three months? We'll take it!  The hardest part about today is the wait.  Fionn is the Old Man on the schedule today.  All the other surgeries are for kids who are even younger than Fionn, so they rightfully get to go first.  As hard as it is to explain to a nearly 5-year-old why he can't eat anything before surgery, it has to be infinitely more difficult to explain it to a 2-year-old or an infant.  So far, our kid is hanging in there.  Watching Scooby Doo to distract from his hunger pains.  He's pretty amazing.  I ate breakfast this morning and stealthily gobbled a snack bar in the bathroom, and I'm still cranky as hell that I can't have lunch yet. 

In terms of his counts, Fionn's ANC is on the rise (900 today), but it's still a bit lower than they would like to see.  As a result, he is still not taking the full dose of chemo that is usually prescribed to a patient in Maintenance.  We also have to return again in 2 weeks for a counts check.  They are eager to get his meds back to the full intensity as soon as his counts are high enough to handle it.

Counts aside though, I am so pleased to report that Fionn has been doing great.  Just great.  His beautiful blond hair is coming in so nicely, and he seems to feel 100% himself almost all of the time.  Of course, this means that our boy is his usual energetic, mischievous self, delighting in torturing his little brother and turning our house into one big fort.  Or a race track.  Depends on the day. 

Whew!  Thank goodness we have a new playground out in the backyard to help diffuse some of that energy!

As many of you probably already saw on Facebook, our family was the recipient of a pretty amazing gift last week.  The Roc Solid Foundation is an amazing nonprofit organization which travels around the Southeastern US, building playgrounds for kids who have cancer.  Its founder, Eric Newman, is a pediatric cancer survivor himself and decided to devote his life to giving back to other kids who are struggling.  Pretty inspirational and incredible stuff.  Here is the link for the website if you are interested to learn more about Roc Solid or donate to the cause.

http://rocsolidfoundation.org/

Last Thursday thirty volunteers from Keller Williams as well as a handful of Roc Solid representatives arrived at our home to donate their time to the playground project.  They wanted to playground to be a surprise to Fionny, so we left the premises for the morning.  And returned to this...

I knew it would be a beautiful playground, but I was still awestruck and touched beyond measure when we actually walked into the backyard and saw it for the first time.  Seeing all these amazing individuals who gave their time and talents to our family...for me, it was a very emotional experience. It became even more emotional when a family who lives nearby came over to introduce themselves because they saw the Roc Solid tents and signs in our yard as the volunteers were working.  This amazing family has a beautiful little girl, Scarlett, who is a brain cancer survivor.  She is two years post-treatment and doing great.  She is an energetic nearly 4-year-old -- you would never know that she has been in a fight for her life so recently.  Kids are just amazing.  I continue to be surprised by the resiliency and strength that I see exhibited by Fionny and our other cancer buddies.

One last thing about the playground.  Before they left, each volunteer wrote a little message to Fionny in the nooks and crannies of the equipment.  It's been pretty cool to find them.  Here are just a few.

What a month this has been.  What a month indeed.  And, of course, we still have a certain fifth birthday to celebrate in a week or so!  June is going to seem so lackluster in comparison to this nutty-but-amazing May.  That's okay.  We'll take a little calm and normal in our lives too.  Nothing wrong with that. 

Normal means hours outside in the backyard, enjoying the weather (and getting stuff done too).

I will update again after Fionn's big birthday celebration next week.  He is pretty excited to turn 5.  After all, he's only been anticipating it for the last 11 months and 3 weeks.  Until then...