Day +1,163

Today is a GREAT day!  I've been waiting, admittedly too long, to write this update because we knew James had a clinic visit scheduled for today, 2/11... and wanted to get some details from that visit before writing this.

We have been working so hard for over 3 years to wean James off of medications - with complications, as you know from reading these updates, we've gone through long periods of adding, subtracting, adjusting, but never making the progress we have been hoping for.  Well today we finally feel like there is some end in sight for James to be medication free and closer to a normal state of life.  Like all of our clinic visits, they start with labs (blood draws) and there's quite a few vials with all the tests the run... 5 or 6.  As you can imagine, James isn't a fan and is becoming increasingly vocal about this as he gets older.  James' labs from this morning looked very good and as such we're making some major reductions to his medications.  James will be stopping 3 medications as of tonight - Jakafi, Acyclovir, and Fluconazole.  More importantly, after years of being on immunosuppressants we can officially say goodbye as Jakafi was the last of them.  

Rita took James to clinic today and when she texted me about the medication reductions it brought tears to my eyes - which isn't common if you know me - knowing how far we've come and the progress James has made, especially over the last year.  James is down to one single oral med, one pill and an inhaler.  That's a far cry from the below image - let alone when James had a port, IVs and other non-oral meds.  

All that said - there is even better news from today's visit.  If James handles this well (as we expect him to) the plan is to go off the remaining medication once cold/flu season is over, meaning James could be 100% medication free by May or June.  Additionally, the team mentioned that with James being medication free he would be officially discharged from Lurie's and only need to come back for an annual survivorship visit.  I was speechless - none of this was anywhere on my radar and this has simply been part of James' life... for a longer period of time than before he was sick.  Just so happy for James... and really hopeful that he will be able to put some part of this illness behind him for good.  And many of you have read these updates for years - we won't stop them - but wanted to say thanks for all the support along the way.  It has not been easy, but it's been much easier because of you all.  Much more than you know... the support has meant so much to us.

Not to be a downer, but the unfair loss of his hair, and potential issues with his growth will never go away and we think about it everyday. More than once a day. It is becoming a bigger stressor in James' life, so that part will always remain.   But for James to be well, not on medication, not sick anymore... can't think of anything better.

In other good news, James received 3 more of his early childhood vaccines today.  Poor kid's leg is pretty sore but we are so excited he is getting more protection and his immune system is getting stronger everyday!

Last but not least - we never thanked everyone for the blood drive and that's long over due.  We greatly appreciate everyone that donated - in December there was (and continues to be) a huge need for blood right now.  I am also aware that the sign up process isn't the smoothest and that the free pizza and ice cream coupons were at times non-existent at the locations as promised.  I know you didn't donate for those reasons, but apologies for any confusion... I'd rather have a somewhat broken process and get the blood donation in that not hold the drive.  So THANK YOU as I know it was a commitment!  And - thank you for the donations to Cal's Angels as well... REALLY APPRECIATE IT!

Time for a beer, glass of wine.. or something else to celebrate.  One of the most positive steps forward I can think of in recent memory.  Go James - we love your fun loving attitude, how great of a big brother you are to Maeve, and how you've handled all this in stride over the years... we're so proud of you!

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