KISS-MY-ASS CHEMO AND OUR ARMY

Several weeks ago, Jack went to his typical chemo infusion.  It started off as usual – first to the front desk to get his wrist band after numbing cream is applied to his port, blood work and weigh-in with the nurse, the 100-point check list with another nurse, and the wait to see the oncologist, before the wait (and wait) in the infusion room.  When Jack’s oncologist came in, he of course asked Jack how he was feeling and what he did that week.  He replied that he was doing well, and that he is planning a “kiss-my-sweet-ass chemo party” the next day.  (Yes, ordinarily we would not allow him to say “ass,” but with what Jack is going through, Jake and I thought that was the least we could grant him (he is absolutely allowed to say that chemo sucks too!)).  Upon the announcement of his . . . unique . . . party, his doctor laughed until he cried, and later told me he could not remember laughing that hard, thinks Jack is a riot, and that one of the reasons he went into this field in the first place was because kids are just so great and that you can do this for 20 years like him and still hear something new!  Apparently, Jack, with his sharp taste in clothes and ability to make people laugh, has already earned quite the reputation at Aflac Cancer Center.

I won’t deny that Jack has an unbelievable attitude, and sets the pace for us to follow.  I marvel at him.  But his spirit and perseverance does not exist in a vacuum.  As my good friend told me months ago, we do not have support – we have an ARMY of people around us, providing love and support every day.  Jack feels this every day – his family feels it – and it enables him to think of the good things, as he says, like the kiss-my-ass chemo parties (ok, yes that was an O’Brien-side idea – clearly) and the special visitors during infusions and the seemingly endless care packages that he gets to open each time he has chemo.  He has his strongest supporter and protector by his side – his brother Luke – and his sister Gracie to make him laugh.  He has been made honorary captain of the Cambridge wrestling team, with another wrestler dedicating his season to him, and been given a Christmas pickle to put on his tree, and been sent a blender in hopes of making smoothies to fatten him up.  Patrick Kane sent him a get-well card!  Packages arrive as far as Belgium with sweet treats and things to occupy him (and often for his siblings too – which is so touching), and we have secret supporters (the Milton Love Club) – who put a good luck sign in our yard, along with other anonymous treats left at our door, help caring for Jack’s siblings, and numerous, numerous meals from friends and neighbors who know the last thing I have the energy to do is to cook when we get back from chemo.  We have family here and in Boston that are all over this and fighting with us and who have our backs, from more care packages, to caring for our whole family, to making sure that Jack laughs and laughs, and letting us cry when we need to.  We have 3 men in our lives (and those close to them) that have changed the course of CureNFwithJack.  The Burke boys’ after-school family is another one of Jack and his family’s lifelines, and loves ours like their own.  And the teachers, oh the teachers – from his 2^nd grade teacher who loves him so and is doing everything in her power to make 2^nd grade a rewarding and growing time for him, to others who have cooked for our family and provided every type of support.  Oh the Christmas the Burke children are going to have thanks to so many!  We have cases of Muscle Milk from friends who know Jack needs all the calories he can get, and received an unbelievable book – The Special Christmas Wish – written by our special friend’s 3^rd grade class. People from all over –  several whom we don’t know personally – want to know about NF and run to fight NF and shoot many pucks to fight NF and who sell lots of lemonade to fight NF, and send letters to Jack to keep fighting (from student council and neighbors and far beyond).  One of those letters came just last week, from a young boy who learned about NF through CureNFwithJack and who wants to cure it when he grows up.  And I’m just scratching the surface.

Then there is support for Jack’s Mom.  There have been meals just for me (that “yucky” healthy stuff only Mom loves to eat) and wine and messages of love and support sent in every medium – too many sometimes to even respond – but all read and deeply heart felt.  My peeps have texted me and called me and told me that to care for Jack – I need to accept help, and that I can do this, and that they are here for me so that I am here for Jack.  Thank you for giving me permission (indeed, insisting that I better!) to rely on so many – from our Alpharetta and Milton friends to our irreplaceable friends next door (Go Blue!) and down the street to those who have contacted me from Illinois and Boston and Florida and Philly and honestly from too many places to remember.  My Michigan women also have wisdom wise beyond their years (again, Go Blue!) and somehow know just the right thing to say when there exists no right thing to say.  I am a very wealthy woman when it comes to supportive friends.

I would be remiss without mentioning the one person without whom I could not fight NF – Jack’s Dad.  He has faced NF head-on with bravery and determination, and there are not enough words to describe what he has done for our son’s cause, particularly in terms of communication these last several months, particularly when I could not talk.  Thank you, Jake, for keeping everyone in the loop when you don’t want to even think about NF or chemotherapy, and for the blog, and for everything that you do to keep the CureNFwithJack machine moving.  With him by my side, I know that WE will never, never, ever give up this fight.

So when people say “I don’t know how you are doing it” well, we are doing it because we have Jack’s ARMY behind us.  That’s how we are doing it — and that is how we will do it.  This is what goes through my head when we are in the infusion room and every challenging moment in between.  This is why I cannot ever adequately express our gratitude, and indeed I break down with tears when I think of our ARMY. 

If I could be so bold as to ask something of each of you this Christmas season, I ask to not only keep bringing awareness of NF wherever you go and however you can, but to also think of and pray for those sick children – far too many – who don’t have Jack’s army behind them.

Merry Christmas to all, and just for the record, I’m with Jack: Kiss-My-Ass Chemo!

With much appreciation,

Jack’s Mom