Yes I know its been over a month since I last updated the blog.  I originally intended to update this once a week to document our journey, but I think what I wasn’t expecting was the “grind” period we are going through now.  By grind period I mean where everything feels the same and the days and weeks start vanishing off the calendar at a rapid pace. 

With this grind period it feels like there isn’t much to update on.  No news is good news, or at least it’s not bad news in our situation.  However, this week several individuals asked me when we would be updating the blog again and I had an uptick in questions from acquaintances on how Will is doing. I started to take the hint but each night as I sat down, I couldn’t think of what to write.  Then on Wednesday Kim’s headache doctor told her that I needed to update the blog.  Okay, okay, I get it!  So, this one is for all of you out there who asked me last week when we were going to update this!    

So the update…update…update…update…Well every week feels the same; two scheduled trips into the hospital each week for infusions on Tuesday and Friday, starting those days with an hour of sitting in traffic, stressing about prescriptions not being filled on time, juggling multiple pharmacies for the umpteen prescriptions he is on because some require special pharmacy, some require prior approval, etc…, watching for bleeds due to constantly dropping platelets as a result of the TMA, constant blood draws (not sure how he has any left) to check the multiple levels they are closely monitoring, guarding Will’s nonexistent immune system against sickness/colds that are going around, attempting to work/husband/parent/self care in between it all, the ever delicate tip toeing through gradually weaning him off of meds while also adding additional ones to help him with that and everything else his poor little body is going through.   (I say little but my little boy is now a lot closer to 12 than 11 and he keeps growing up in the midst of all of this happening to him.) 

And that is where we are still at, yes everything is kind of different than it was a month ago, adjustments have been made to meds, his GVHD remains in a good place, things are kind of progressing, but they are all the same too. 

One example, last week we were able to reduce his Ruxolitnib dose down to one pill a day.  Ruxo is the med that helped with his GVHD but has the nasty side effect of making you bleed more and is the likely culprit for all of the platelet/hemogoblin (yes I know I spelled it wrong, but my brain always switches it to goblin and I think its funnier.  My humor, if you can call it that, is probably a defense mechanism, you know like a spider changing colors to blend into their environment right Peter?) 

I should add that we completely trust and have faith in his doctors, they are amazing.  I don’t want to make it sound like we don’t trust them.  They are making the best of a challenging situation around every corner, and we are so lucky to have them.    

Anyway, his doctors have wanted to get him off of it ASAP because of the side effects but it’s dangerous to stop it quickly because the GVHD could come right back.  On top of it all, Ruxo is a fairly new medicine, and they aren’t exactly sure how quickly to wean it so they err on the side of caution and go very slowly.  Right now, we are starting into a two week stretch where we will stay at his current level and closely monitor him.  Then in two weeks we will cut that dose in half and watch for two more weeks, etc…

Amid all of this, last week I started preparing myself for my regular “patience” pep talk that I like to give myself when I start feeling sorry for myself.   After all, this week was Spring Break here in Arizona and as I started seeing all the posts about family, friends, neighbors, co-workers heading out on vacation I started getting irrationally angry that we couldn’t go anywhere.   How dare you all have fun and do cool things!  (On that note: Dear infusion doctors/technicians working in the CCBD clinic, don’t ask your immune compromised kids if they have any plans for the weekend.  Yes our plans are to stay safe and alive, what are you up to?) 

However, this week when I started gearing up for the talk with my inner self I realized something.  I’m not frustrated, I’m not asking when it’s all going to be over.  I might actually be demonstrating some patience people!  Mind you it’s probably coming more from a place of being beaten down by life’s current challenges to the point where hope is but a small speck on the horizon, but everything just kind of is.  This is our life right now and it’s okay.  Actually, I think it’s more than okay.  I think things might even be classified as good.  Yes, our hands are full.  Yes, we are exhausted each night and hate the mornings when we get up early to head into the hospital.  Yes, the constant flow of medicine is tiring and we are sick of saying our most repeated phrase “Take your pills!”, but through it all there is happiness, there is love, there is peace in a time where it feels like we shouldn’t have any. 

Life goes on and we adapt, just as I’m sure all of you adapt to the ever-mounting challenges in life whatever they are.  All I can say is keep your head up, put one foot in front of the other, hold on for dear life to whatever it is keeping your propped up (family, service, food, books, sleep, work, cleaning, hobbies, spouses, siblings, candy, Diet Coke, etc…) and know that if you endure that this too will pass. 

And if you are lucky, it will pass with a cat in your lap!