Saturday, November 22, 2014

One full day of almost normal

Prior to discharge, bone marrow transplant kids and parents have to go through a couple of hours of training.  The training largely focuses on the dos and don'ts of leaving the hospital.  For example going to see a movie with lots of people is a "don't" - so is eating berries.  Always wear your mask.  The blue one that makes breathing like sucking an ostrich egg through a garden hose. Don't go barefoot.  Avoid any crowds. If your friend that goes to public school visits, they need to shower and change clothes before they come to see you.  Lots of rules.

And then there are the medicines. Part of the training before you get to go "home"  is administering the medication to Jacob.  There are over 15 different meds of all sorts. He basically gets a 'meal' of meds for breakfast and dinner with and an IV snack in the middle.  The job seems pretty easy while doing it under the watchful eyes of the nurse.  But I learned  this past Monday it's just not.  Throw into the mix that Jacob's entire digestive track is still recovering from the hammering it got in the last chemo round - and it will be for months.
The Drugs

We started the regimen in the morning. Jacob has to battle to keep those meds down.  Sometimes he wins that battle and sometimes he looses and then he has to take them again.  How he endures this with only a glib comment like "my stomach is angry with me" is beyond me.  I watched this young man do this, just me and him for the first time and then it hit me again how hard this is on him.  Watching this in a quasi-normal setting without the noise of the hospital brought the intensity of this battle home to me.  This is not easy, there is no button to keep your stomach from getting "angry" it's just going to.  Every day for breakfast, lunch and dinner he perseveres.

Despite all of this Jacob liked being discharged to a "normal" place this past Monday. Dad cooked his favorite meal 'adobo' for dinner - three helpings!  He promptly set up shop and began yet another lego kit.  He enjoyed standing in the sun Tuesday morning on the balcony of this apartment at Brent's Place.  Smiling as he worked on legos, grimacing as he struggled to keep the meds down.  Laughing when Dad told him something funny. We had a hard, but good day on Tuesday. Then we get a call:  "Marshall when you bring Jacob in for labs tomorrow morning, bring his stuff."  What? "A virus that we all have woke up in him - he'll need to be on antiviral medication round the clock  until his numbers come back up."

One full day of almost normal.  Jacob is back in the hospital hanging out with his brother as I write this.  He will probably be there for another two weeks.  It's normal for these BMT kids to go in and out but I don't think its ever easy for them.

I want to always write the truth here.  Right now we are still learning how to  "Consider it pure joy, my brothers, whenever you face trials of many kinds" as James encourages.  What I have learned is that takes reflection - looking at small increments of where we have been so far and seeing changes in our outlook on things and realizing that we are different.  Different in a good way - maybe deeper, maybe "more" somehow through all of this but we still don't see it all.  I do know we will get it someday.

Weirdly Thankful


Thursday, November 13, 2014

Uniform ≠ Warrior

I got scolded the other day about not writing by a nurse that has been with us since the journey started last March.  This young lady and many others on this floor have become our friends.  We celebrated veteran's day this week - a day set aside to remember those who showed up to serve all of us.  But did you know you don't have to wear a uniform to be a warrior?
Bone Marrow Transplant Unit Nurses Station

I want to take moment and tell you about the warriors that serve on the 7th floor here at Children's Denver. The people that work here are passionate about beating cancer and other disorders they treat here on 7E.  They are selfless, they are kind - they are one of the best things that have happened to us in this journey. We've learned their stories - at least some of them.  They are all over the map with one commonality - they love what they do and they love these children and their families.

They are on a mission.  I think that's what resonates with me - the mission, having a mission, a purpose a goal.  Having been on a few and knowing what it takes to complete them these guys and gals get it. Their weapons are different to be sure:  compassion and empathy, a listening ear, IVs and stethoscopes, thermometers and blood pressure cuffs, masks and gowns, all wielded by highly trained warriors who defend that kid on the roster on this shift, right now. Then they go home, get up and get here early to do it again - because they love it and I think they even love him, or her as they apply the gifts of healing and mercy to these kids.  In some cases, I think they can hate it too.  It - meaning loosing.  An infection getting around them, a virus sneaking in or the worst loss - that I will not speak about.

If you are on a mission of any type, you want people around you that hate loosing, that play to win. They are confident, they are bold and unwavering - more importantly they are our team.  I praise God that he made people like this. It is a great honor to have these people on Jacob's team - a great honor.

As you pray for us - thank the High King for these warriors, ask that he sustain them and confirm in their hearts what they are doing.

Now for Jacob.  The worst of the chemo side effects are gone.  The ulcers mostly gone.  Soon we'll move into Brent's Place to stay near the hospital for the 100+ days to ensure he recovers fully and has rapid access to the hospital should he need it.  We'll be dividing our household for that time between Denver and Green Mountain Falls as Jacob will require 24x7 care from Lorrie, myself or someone else.

Pray for us here because we have no idea how to do that.  How do you balance work, home school the other children and do cancer from two places separated by 87 miles?  (If you have ideas we are all ears)   But I do know one thing: my hope is unwavering, we'll be King has got this...just like he has all along and the "how" will come.

Friday, November 7, 2014

Coffee Filters, Glasses and Mercy

Last Saturday morning I stumbled into the kitchen to make coffee.  I fumbled with the filter thingy
and it fell apart in may hands.  I struggled to put it back together looking very much like a chimpanzee fixing an airplane.  I could not see what I was doing - no glasses.  Then I wondered "why do we loose our eye sight?  and then thought "Glasses are really cool." Then I thought about mercy.

God hates what happened to us as a result of our rebellion. Think about it... as he watches our fall he watches our bodies start to fall apart as we age, he watches us struggle in our work and our appetite for contentment. Not that I know the mind of God but there must be some element of "..if only you had listened, all of this could have been avoided." He made us to be free, to walk in friendship with him instead we broke faith, we rebelled.

So many stories and mental pictures out there depicting God hurling us from Eden.  He did not want that - we chose it.  And then his mercy started chasing us.  I have proof that he is merciful:

  • We loose our sight, he gave us the ability to develop optics to help us see
  • We get sick, he gifts some with the talents to heal (research, treatments you name it)
  • We work sometimes it satisfies...most times it does not.

We're not content. It's as if we have what was meant to be hard wired in our souls. - We do.  That in itself is a mercy - His mercy.

We have the elephant in the room that no one wants to talk about.  Namely that its not going to last these lives we lead here, we will live, love, suffer, live some, love more then we will pass like smoke. That elephant in the room is proof of his mercy.  He gave us Jesus as if to say "yep there's an elephant in here all right."  He gave us Jesus to recognize that and turn to him and be healed. Mercy.

For those of us who know Him and will allow Him to know us...He will restore:

  • One day, my eyes that are seeing less and less detail now...will be able to see every detail, every thread of his intricately woven robe
  • One day, I will all of the sudden notice - that have no ache, no pain, no stuffy sinuses and will marvel how far short of reality is for what I used think "feeling good" was -and then realize the gravity of what he rescued me from.
  • One day, I will forget what "being sick" or "having cancer" or "stubbing my toe" is. 

One day I will be who I was meant to be, a new creature, with a new body, living life - real life to the glory of my High King. There will be no more young men laying in a hospital room with ulcers in their throat caused by chemo therapy.  No more.    I love that fact.  I love the fact that I can rest on his promises - that YOU can rest on his promises if you choose to.  Why would you not?

As I write this, Jacob is experiencing the full brunt of chemo side effects.  Painful ulcers in his throat - probably for 5 more days the docs say.  This will go on until the gift our 20 something gave him grows and replaces the cells that would be taking care of this issue now but are gone due to the chemo.  Despite this, Jacob is still expectant, he is still strong and he is very much in the fight.  I think he's going to win.

The road is not complete.  There are still twists and turns that we'll experience.  But knowing - really knowing how merciful God is... knowing how he is carrying our burden...makes it bearable.

We love you all.