"Are you sitting down?"

“Are you sitting down?” Yes. “His clone came back”. What? “His clone came back.” What does that mean? “It means that the cause of his leukemia – the MDS has come back.” Airplane noise. I found out 2 hours ago that the great gamble – the generous gift from our unknown 20 something is failing.

Stunned. I am on a plane coming home from a meaningless business trip to Boise. I get the news in an airport waiting on a delayed plane to arrive to take me home. I’m sitting on this plane trying to process what the transplant doctor just told me. The people around me banter about…well – nothing. Jet noise. Laughter -while I try to process this. “Do you want to tell Lorrie – or should I call her?” Stunned. You call her. You explain it. I can’t. “Do you want me to talk to Jacob?” No let us get our head around this.

Thoughts rushing as the Jetstream slips over the wings. What do we do? He told me the options – but I don’t remember what he said. Something about maybe inducing graph versus host or host versus graph or graph versus leukemia and something about more chemo – maybe radiation….are you sitting down?” I’m sitting in a plane going back to Denver. What do we do? What do I do?

I’m tired. We are tired. He is tired I am sure. He just wants to get better. As I sit here I wonder if I am going to have to tell him he’s not going to get better. How do you do that? I have no idea what is going to happen. I do not know if my son will live or die. We descend. Twenty minutes out. I’m going to take a cab to the hospital and tell Jacob that I love him. He’s not seen any of us for 2 days. Sickness in the house. This is so hard. All of this.

I got to the hospital and realized I left my phone in the cab and headed up to Jacob’s room. There he was. Waiting on Dad and tacos. He asked me about Boise. I read to him out of Romans. We laughed. This morning the cab driver from Senegal brought me my phone. I cornered the doctor that has had leukemia before. “What do we do?” I asked.

I’m listening for His voice in a very high wind.

Marshall

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

Marshall

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 sustained...my King has got this...just like he has all along and the "how" will come.

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.

The Gift

The Christmas Tree

The Gift

THE Day

Today started like most days in Children's.  The nurse coming in, doing the rounds, taking vital signs.  Jacob - tolerating it but hanging on to just a bit more sleep.  Dad on the fold down couch -tolerating it but hanging on to a bit more sleep.  Then remembering...

Today is the day that just might save Jacob's life.  Yesterday a young man, somewhere in the country woke up and drove to a bone marrow donor clinic.  In that clinic he filled out forms, was asked if he had anything to drink or to eat in the last 12 hours, he was given one of those lovely hospital gowns and then asked to count backwards...10, 9, 8, 7, 6... out.  The docs inserted a needle into his pelvis and perhaps his femur to extract healthy bone marrow - what  Jacob needs so desperately.

While our young man was recovering, the marrow was processed by doctors, lab techs and others to get it into the form Jacob needs - T cells.  This morning, as our young man was popping a tylenol to take the edge off the pain in his hip and catching up on the lack of coffee the day before a Fedex truck arrived at Childrens with a small insulated box - probably at about the time Jacob and I realized the nurse was not going to let us sleep any more.

As I sit here, Jacob eats breakfeast, and is giggling as he watches Tim Hawkins videos on youtube.  He makes a passing remark about how his stomach hurts this am - the last chemo round is catching up to him.  This is the day. The day we thought we would not make it to and the day we hoped for a hope.  It's here.  In about 5 minutes they will bring some of the IV meds to prep for the transplant.  In about an hour they will bring in the most precious gift we have ever recieved second only to the gift Jesus gave us.

I have no idea how it will feel to watch this.  I have no idea.   I'll write again after.  Right now I'm catching up on my coffee like our young man is. Maybe popping an advil to take the edge off of what the hospital couch does to my back and asking the High King to bless the man who gave of himself and Jacob giggling under the covers.

Not my prayer but His plan...he's soverign and good, we're His and He's ours.

Marshall

Waiting to exhale

Bone Marrow Biopsy.  THE indicator of winning or loosing the fight. A week ago Jacob went in for  a biopsy.  The last one was clear - no leukemia blasts - some funky cells, but no leukemia.  That wait was long - but the wait between last Monday and the following Thursday was really long.  During that wait a parent thinks "was the last time a fluke?" and "is it safe to hope?"  Notice - not "is it ok to hope?"  Because you want to with every fiber in your being - but rather..."is it safe? ...do I dare?"

During the waiting of last week we had appointments every day in Denver with Jacob.  It's called "the workup" for transplant.  It's exhaustive(ing).  They check everything and then do what is needed to get him ready for transplant.  The last meeting was a 3 hour consult with a passionate transplant doc that takes cancer personally.  In the meeting we got the news...

He's clear.  No blasts. No Leukemia.  Some cells with "dented heads"  pre leukemic to be sure (Myelodysplastic Syndromes or MDS) but not Leukemia.  It was probably the cause of Jacobs AML M7 Leukemia but it's not leukemia.  Do you know what this means?

Transplant.  A chance for this boy to live.  We went from discussing hospice to....hope.  He has a match -not just any match but an 8 out of 8 factors match.  A generous 20something taking 3 days of his life and giving it to my son.  Exhale. Let it settle in. Dare I say...disbelief?  Breathe.

A flower called hope bloomed in my heart.  A slow welling up of praise and thankfulness to my Jesus.  Someone told me " ...celebrate it's like a touch down!"  Kind of.  To me it was more like that 4th quarter 1st down on the last drive of the game to give you a shot at winning by 1 point.  Know what?  He could win.  He could really beat this thing.  I'll take this form of hope.  It is the rawest, probably the most hopeful hope I have ever really felt.  This has taught me to hope -again.

I love how Jesus knows just when to act.  It is ok to hope - again. So the way ahead.  The work up is complete. Admission on 20 October.  Straight into the chemo that marks the end of a big part of Jacob's genetic code and marks the beginning of what to me is as close to a re-birth as one can have physically.  He gets the 'gift' from our 20 something on the 30th.  Did you know Jacob will take on the blood type of his donor?  He will have to get all of his inoculations all over again. In alot of ways...reborn.

He will get a new start - a new start because someone gave of themselves.  Sounds...familiar... I hope you can see the allegory that I do.  Jesus bled...he saved us all.  He rose again...and so did we.  Rebirth.  Life.  I am now inhaling...one of the sweetest fragrances ever....hope.  If you think your life needs a 'transplant', Jesus is the donor you are looking for.

Glory, Honor, Strength and Power be to Him!  The High King and Lover of ...us.

By the way... Jacob has been home for the last three weeks.  Here's a picture of how it's going...Weston Pass 2 weeks ago...one family 2 4X4s and alot of fun..

From Left to Right: Naomi, Bella the dog, Lorrie, Marshall,
Rosie the dog, Hannah, Joshua, Jacob and Noah