Why?

Why, why, why????

This was from a drive into the hospital a couple of weeks ago before all of the recent excitement. It’s one of the few pictures Will let me take of him where you can see how much swelling he has in his face. We are anxious to get him off the steroids and get him back to normal, whatever that is!

I mentioned this in our last update, but we have found ourselves once again living on the edge while Will’s platelets have plummeted back to levels he had a year and a half ago when this whole process started (i.e. under 10).  The all too familiar bloody noses have come roaring back combined with some horrendous looking petechiae on his legs.  That and his increased swelling, water retention and raising blood pressure eventually led to us being readmitted to the hospital again. 

Pictures don’t really do it justice, but here is some of the petechiae on his legs from the last couple of weeks. This was after a lot of the swelling went down.

We generally have done a pretty good job with rolling with the punches during this whole process, but I will be the first to admit, this time around it felt a little more serious and I was a lot more scared.   Kim and I keep waiting for the other shoe to drop, in constant fear that something will go wrong while trying to stay upbeat and positive.  I know the worst can happen when you least expect it so we can’t put down our guard. I almost refuse to let either of us go to the hospital alone with Will for fear that even the most menial appointments could go wrong.  Yes, its unhealthy and yes, its PTSD and yes, I need to work on that.  But its there all the same.

The swelling in his legs and feet was particularly troubling this time and I have to keep telling myself not to google his symptoms as every result seems to have a mortality percentage on it.  Those percentages mean nothing I tell myself.  Will’s case is literally one in a billion. 

Surprisingly the hospital admission was a welcome relief for all three of us for a few reasons.  One, it allowed us to get him some quick blood products to balance out his levels.  Two, we could deal with the swelling via strong IV diuretics and three, we could closely monitor him while we continued to wean him from the steroids which should help on several fronts now that his GVHD seems to be under control. 

With the hospital admission we were also finally able to get insurance approval on his new medication to treat the TMA that I talked about in the last update.  This was after a few days of back and forth trying to confirm that was what he even had as his symptoms didn’t quite line up and they evaluated him for a few different complications before settling back on the TMA and putting together a plan of action to treat it.

After the first few days Will started making good progress and I started feeling like we were out of the danger zone for now.  However, we had to stay in the hospital for a few more days as we couldn’t get insurance approval to provide the new medication outpatient.  Since they had started the new treatment, we had to keep it going.  That meant that essentially we couldn’t go home until they received approval to continue outpatient.   I supposed I don’t blame them for the difficulties in approval, after all when I looked up the medication the first thing I saw was that it was an average of $800,000 a year for the new treatment.  I can respect the effort to cross their I’s and dot their t’s (strike that, reverse it) when that much is on the line.  It’s not the first time the insurance has decided they would rather spend the money to cover his hospital stay than to approve outpatient treatment.  I’m sure they have their reasons but it seems awfully silly.  Cut off your nose to spite your face or something like that. 

Eventually we were able to get approval to administer the treatment outpatient and Will’s dangerously low blood levels balanced out enough that we could go home.  Hooray!  But not so fast, we then found out that they couldn’t get the medicine shipped to the hospital in time for his Tuesday clinic appointment.  That meant we would have to stay in the hospital an extra three days to handle his treatment inpatient because they couldn’t get the medicine to the hospital fast enough.  BOOOOO!

After more back and forth our doctor (bless her) finally decided that waiting an extra day on treatment wasn’t going to hurt and we were released over the weekend, able to sleep in our beds once again and be together as a family…

That was for about a day when Will’s nose once again started bleeding Monday morning.  The frustrating thing was they gave him a double dose of IVIG before we left the hospital and now here he was with another bleed.  We thought we would be covered for at least a week after the IVIG.  After an hour of bleeding with no stopping in sight, we found ourselves driving along the all too familiar stretch of I-10 back into the hospital.  His nose kept bleeding for almost four hours.  After two rounds of labwork and a healthy infusion of platelets they got his counts back up, the bleeding stopped, and we were able to come home.    

That brings us to today.  In front of us we have three appointments per week for the next couple of weeks for treatment and testing.  It sort of feels like a never-ending thing at this point.

So, I find myself asking the question why?  Watch out, I’m going to pontificate for a moment…

I think “Why?” might be one of the most asked questions in life.  We start asking it from the first moment we have enough conscience to ask questions and keep asking it perhaps to our dying breath.

Why?

Why is the sky blue?

Why?

Why is water wet?

Why?

Why is grass green?, Why can’t I eat dessert before dinner?, Why do I have to brush my teeth, Why do I have to do my chores?, Why do I have to pay taxes?…..

Why can’t I have what I want when I want it?

Why ask why?  (and its not “try bud dry”)

  • Random side note, I googled “Why?” and found a list of the 1000 most asked “Why” questions on Google. Here are a few of my favorites:
    • #946 – Why does my dog smell like fish?
    • #924 – Why homework should be banned?
    • #756 – Why do mosquitoes exist?
    • #751 – Why you do dis?
    • #659 – Why do you want to work for Chipotle?
    • #615 – Why do I hate people?
    • #493 – Why would you do that?
    • #176 – Why is there a dead Pakistani on my couch?
    • #103 – Why don’t you?
    • #14 – Why is Cailou bald?
    • #8 – Why are cats afraid of cucumber?
    • #3 – Why you always lying?
    • #1 – Why is there a leap day?

We ask why because we are born curious and keep that curiosity throughout our lives.  We ask why because we are trying to make sense of this big world around us.  We are trying to get more information when we don’t understand and there is a lot out there to understand.

Truthfully, many times when we ask “Why?” we either already know the answer or we don’t really want to know the answer in the first place.  It just means we want to further discuss it. 

“Why is this happening to me?”

This week, while I had my arm wrapped around Will’s shoulders at the hospital, taking turns helping him hold and swap Kleenexes in the middle of his marathon bloody nose (I can’t tell you how many white t-shirts we have been through over the last year and a half.  I’m thinking we should invest in red ones.) he was fighting back tears asked me, “Why can’t I just be normal?  Why does this have to happen to me?”

My first answer is who wants to be normal anyway? But that’s not really what he’s asking. It’s hard to answer that question for Will when I spend so much time asking the same question myself to no one in particular.    Call it a blessing, call it a curse, call it luck, call it whatever you want.  Is life an:

A) a predefined set of experiences where we have no free will

B) a complete jumble of random chaos or

C) a life where we earn blessings or curses based on our deeds? 

That leads me to the dangerously loaded questions of “Why do bad things happen to good people?” or “Why do good things happen to bad people?”

I think the answer is D, all of the above and everything in between.    Regardless of your belief system, some things will just happen to us, seemingly at random.  Some things are consequences of our choices.  Some things are outside of our control and are the result of other people’s choices.  You can influence your “luck” to a degree but at the end of the day there is a portion of that things just happen to people, period. 

I don’t ask the question “Why?” because I’m expecting an answer.  I know I’m Dad and I’m supposed to make everything better, but I think Will has reached the age where he probably isn’t asking me “Why can’t I be normal and not go through any of this?” because he expects me to have an answer either.  I assure you; he is fully aware of my shortcomings and the fact that I’m not omnipotent is up there on my list of them. 

We ask why out of frustration.  We ask why because none of it makes sense.  We ask why because the logical part of us must have an explanation when one isn’t there. 

I don’t know what we are supposed to learn from all of this (maybe there isn’t a lesson for us…)

I don’t know why we are being punished (Newsflash, we aren’t)

I don’t know why every corner we turn feels like its faced with another setback (but he’s still progressing…)

I don’t know why…

I don’t know why I had to lose my son…

And I’m not expecting an answer.  I just need to put it out there to the universe and then to humble myself enough to realize that, as the Ancient One said to Dr. Strange, “It’s not about you.”  I should tattoo that on my forehead.  

So now we are back home.  Will’s platelets were seventy-something when we left the hospital yesterday so hopefully that gives us a day or two reprieve on the bleeds.  We head back in bright and early Wednesday morning for his next dose of the new treatment followed up with another dose on Friday…and though our question might be “Why?” the answer is “because” and we will be okay with that.  Will?  Well he’s going to be okay with that too eventually, but don’t ask me why… 

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