Where we are, where we are going

So it has been about two weeks since the last update.

We have been trying to make our home life as normal as possible now that we have the family back together.  Aside from Mark's hair loss and the bin of medicines on the table that Mark has to take twice a day, you might not notice anything was amiss.

Mark is still tired a lot of the time, but has been slowly improving since the chemo treatments in Houston ended.  Still, we knew the chemo and especially the radiation would change him, and we have seen that happen.  He is struggling with short term memory and retention, physical coordination, and hand strength.  His walk is not so sure and steady.  He needs help buttoning buttons.  We've backed off some of the school stuff because he was getting frustrated at not being able to do things he used to do easily.

Mark's sense of humor has remained intact most of the time.  He makes cracks about how nice it is to be home with his 4-month-old nephew Nicholas, so that he isn't the only one in the house mostly bald.  He lately likes to spend his time reading, watching Pink Panther, or funny cat videos.  Sometimes he shows us a clip, forgetting we've already seen it.

When he is tired, he gets irritable easily, as any of us would under these circumstances.  Usually it is aimed at 8-year-old Joseph, deserved or not.  The other day I turned off the outside water faucet under the kitchen window, and Mark barked accusingly from in the kitchen "Joe!  What are you doing with the water??"  First off, it wasn't Joe.  Secondly, even if it had been, it might have been legit.  We've tried to make light of it, and remind Mark that just because something random happens does not make the event a crime, nor automatically involve Joseph.  Joe is becoming accustomed to being a default little brother target and thankfully isn't taking it too seriously.

Charlie the fishing guide holds Mark's biggest catch!

Earlier this week, Grandma Crofford and Pop-Pop were in town.  Pop-Pop had arranged a guided fishing trip for Mark on the lower Willamette River, for sturgeon.  He did this once before in 2009, taking me out with Jim and John.  This time it was John and Mark going out with me and Pop-Pop.  It was cool, cloudy, but didn't rain.  Pretty good weather for fishing, and the guide knew what he was doing.  It was all catch and release fun, and we likely caught over 20 sturgeon in three or four hours, several of respectable size over 4' or even 5' long.  Mark reeled in a few, but got tired out quickly, it was hard work.  He recharged at his favorite place afterwards, getting mac 'n cheese at Red Robin.

That's what has been happening so far since they've come home.

Wendi has been immersing herself in groups of other parents going through similar trials and sicknesses, and is becoming well-versed in the language and culture of cancer treatments, outcomes, miracles, and so many sorrows.  We have come to learn, although Mark's Oncologist hasn't come out and said it as far as I know, that Mark's pineoblastoma has about a 50% survival rate.  Even with that, the heavy burden of chemo treatment will be very hard on his young body, almost certainly causing permanent damage to various systems.  Although very difficult to accept or type out, we are arriving to the place where we accept that Mark is never going to make a "full" recovery, it's just not in the cards he was dealt.  If he survives this, he will always have health challenges and mental deficits to overcome.  This is just our new family reality.

It is not our place to ask why this had to happen to Mark.  And it is not a time for unguided platitudes of what God's plan is.  All we need to know right now is that Mark's life has touched literally thousands of you through this blog, through Facebook, through the fire service, and through the CC home educators community.  We will never know what impact that has had on your lives, how that has affected other lives of those you know for the better, raised awareness and education, influenced life decisions, or inspired others to whatever they are called to.  It is not our place to know, nor do we need to know.  All we are asked to do is to hold Mark's hand as he follows his walk with God, wherever that may take him.  That's why we are here, and that's what we will do.

We have not given up hope, it still remains.  This was caught early and Mark has received cutting edge treatment.  Tomorrow is Mark's first follow-up MRI since returning from Houston.  Mark is fighting and we are fighting with him and for him.  And with that I humbly ask all of you again, to please hold Mark and our family up in your continued prayers, and to renew the prayers for all of us in your prayer communities, for which we will always and forever be grateful.  God bless.