before and after

Two weeks ago my brother suffered a traumatic brain injury and has been in critical condition in the ICU ever since. During these last two weeks my family has all gathered from the various cities we all live in to be with him, tell him how much we love him, and mostly, just wait. Wait and watch and hope for the tiny steps of what will be a very long, slow recovery.

Words fail to describe all of the emotions of the last two weeks - in fact, putting words to this electronic "paper" right now feels a little surreal. This is really happening. This has really happened.

What's even more surreal is that this feeling is familiar. The shock, the adrenaline, the grief, the get to the hospital right now. The before and after where one day your life is one way and the next, everything has changed.

And all this while we are in the midst of anticipating the end of Ethan's treatment, now just 7 days away.

Oh Jesus, be near. 

And so, faithful army, I'm asking for your prayers once again. For my brother Corey - for his healing and restoration. For our family - for strength and peace and patience as we navigate just one day at a time. You can follow my brother's Caring Bridge site for more updates and ways to pray here - (https://www.caringbridge.org/visit/coreynelson)

And pray for Pete, Ethan, Eloise & me as we also look with anticipation to this last week of treatment. It's here. The last week of treatment! Pray that we can really celebrate this huge milestone!

In closing - a hymn. This one's been playing on repeat in my head these last two weeks, and I'm so grateful for it.

Great is Thy faithfulness, O God my Father;

There is no shadow of turning with Thee,

Thou changest not, Thy compassions they fail not,

As Thou hast been, Thou forever wilt be.

Great is Thy faithfulness!

Great is Thy faithfulness!

Morning by morning new mercies I see

All I have needed Thy hand hath provided

Great is Thy faithfulness, Lord unto me!

Summer and winter and springtime and harvest,

Sun, moon, and stars in their courses above;

Join with all nature in manifold witness,

To Thy great faithfulness, mercy, and love.

Pardon for sin and a peace that endureth,

Thine own dear presence to cheer and to guide;

Strength for today, and bright hope for tomorrow

Blessings all mine, with ten thousand beside.

spring

Over the past few weeks I've started to do some heavy duty counting. We are in the actual home stretch of treatment (as of today we are at 39 days to go!) and are starting to prepare for all of the end of treatment things - celebrations and plans and just getting ready. As we've neared this final stretch, I've had it in my mind for some time now to try and find a way to share perspective with you, our faithful army, on all that Ethan has endured over these last 3+ years of treatment. I thought that one way to do so would be to count up all of the things he's gone through - hospital stays and doses of chemo and sedations and such - and somehow give a summary of all of the things that have been a part of Ethan's life these last few years.

And so a couple of Saturdays ago, I gathered all of my notebooks and calendars from the last three years and sat down to do the work of counting.

It turns out the process of counting required actually reading. And so I read - through the notebooks and scratches of words that were both hastily and carefully written in those early days - desperate notes about how to take Ethan's blood pressure at home, how to administer chemotherapy into his port, care schedules for sweet Eloise, so many lists of things to bring from home to the hospital, shopping lists for our friends to gather our food and supplies, and endless notes of lab results and medical reminders for Ethan's care.

And, as you could probably guess, what happened next is the tears started to come. Lots of them. Here I was trying to gather some data to help share perspective on Ethan's treatment for others, and in the end it was me who needed the perspective. It was jarring and sad and emotional to sit so intentionally in all that we've been through over these last three years - to stare at it all directly in the face.

And as I sat there in all of the numbers and notes, I was confronted profoundly with the continual thought - this is why I'm struggling.

Because, if I'm honest, this last stretch has been tough. The stress of the last few years is showing in ever increasing ways for me physically and our entire household is going through the heights and depths of emotions as we all seek to process together what we've been through. Really, it's the process of working all of this out, right? - reconciling life before and life now, pondering what life will look like in the next chapter, trying to help both of our precious kiddos work through the many emotions, trying to figure out ourselves how to process the many emotions.

It's complex and hard to describe but it's all a part of this season we are in and the work that the Lord has set before us to do. And we're working hard (and sometimes not so hard) at working it all out. Letting the feelings come, watching them go. Getting angry, feeling sad, bursting with love and thankfulness, crying over what has been lost. Joy. Sadness. Thankfulness. Grief. Hope. Sometimes all at once.

And so, here we are. 39 days to go. And tomorrow, 38.

Ethan starts his last cycle on Tuesday (April 25th). Cycle 12. The last one. He'll have a sedation with intrathecal chemo - his last sedation with intrathecal chemo - and have IV chemo and begin his 5 day pulse of steroids. On May 24th he'll have IV chemo again - for the last time - and then he'll ring the bell - the end of treatment. On May 28th he'll take his last dose of oral chemo. The last dose of chemo pills. The last day of treatment. 

It's all in front of us, so close. Winter for us has been such a long season and now - so close - spring. A new season on the horizon. Filled with new life and hope and yet the remnant of winter remains - it will always remain, to some extent. This season has changed us and impacted us and we are still working all that out. The struggle in all of that is real, and that's okay.

As many of you know we love to sing at our house and Ethan in particular will often have songs blasting on his radio on repeat for weeks on end. Lately, that song is the old hymn "Joyful Joyful We Adore Thee" - no small coincidence to me because the version we have on CD is from our church's hymn sing tour - it's energetic and filled with praise and seriously sounds like spring.

As we've listened to the song blast again and again (and again), the Lord has been using it to minister to my heart throughout these days of struggle and for that I'm grateful.  Joy in the midst of the sorrow and angst and unknown. It's only the Lord who can make that possible.

1. Joyful, joyful, we adore Thee,

1. God of glory, Lord of love;

1. Hearts unfold like flow’rs before Thee,

1. Op’ning to the sun above.

1. Melt the clouds of sin and sadness;

1. Drive the dark of doubt away;

1. Giver of immortal gladness,

1. Fill us with the light of day!
2. 
   

(Author: Henry Van Dyke)

the waiting game

Today is Day 3 of our hospital stay and it looks like we will be here for at least a couple more days, if not more. Ethan's counts have gone down the last two days and are now below 100. Today he started to have some ear pain which the doctors assume to be viral because he's on such strong IV antibiotics that should cover a bacterial ear infection. His hemoglobin has also gone down each day and is getting close to the threshold of needing a blood transfusion, but is not quite low enough yet.

And so, we watch and wait. And wait and watch some more. To pass the time there's been movies and the iPad, lots of Uno, a little valentine-making, snacks and books and trying to rest.

And, we are blessed by our friends here who are helping us to get through another unexpected hospital stay. This photo shows just one example - our friends Kerry and Kelly both stopped by today and ended up helping the kids to make their class valentines for tomorrow. I mean - the joy on our kids faces! 💕

We will stay admitted until Ethan's counts start to increase solidly. Please pray for this and for his body to be healed from all of these bugs. And please continue to pray for Pete, Eloise and I too. We are continually thankful for your thoughts and prayers!

early morning admission

Ethan was admitted early this morning to the hospital for a fever and very low blood counts. He has been fighting what seems like one thing after another for the last 3-4 weeks (sinus infection, pink eye, ear infection, strep) and yesterday evening he started with a low grade temp that didn't cross the fever-threshold until 2:30am, which meant a middle of the night ER-run for me and Ethan.

He tested positive for strep (no surprise; Eloise tested positive for strep last weekend and Ethan started a sore throat earlier this week and started antibiotics for what we assumed was strep on Wednesday). His team also suspects that he probably has some kind of virus going on at the same time, and that everything is working together to suppress his blood counts. In the words of his oncologist today, "the bone marrow is on a fine edge" during maintenance because his on-going daily and monthly chemo is working hard to keep it suppressed to keep the cancer away. It doesn't take much to have his counts impacted and decrease the way that they have today.

So, here we are again.

This time of year has me fairly deep into reflection mode, where everything we do feels like a remnant of that first January when we started to learn this life that has now become so routine. I went home today for an hour or so to shower and grab a few things and all I kept thinking about were the drives I would take home during the first few weeks after Ethan was diagnosed three years ago. It was so surreal then, so sudden. Abrupt. Like a page torn out of a book and roughly pasted into another, so was our life so severely shifted into a new story.

And today, the same streets, the same drive, the same routine we've (sort of) perfected as we manage life at the hospital and at home. It's still surreal sometimes, even now, three years later.

Please pray for Ethan. He's on IV antibiotics to cover and protect him from infection while we wait for his counts to increase. My guess is that we will be admitted until at least Monday, but his labs will need to show good progress in increasing each day in order to be discharged. Pray for his body to be healed from the strep and any other bug that he's in got in his system right now.

Please pray for Eloise. Our girl is such a delight and these hospital stays are just tough. I want my beautiful girl to know how loved she is and the juggling that comes along with being admitted is hard. And, because of the special bond that they share, Ethan and Eloise miss each other when they're not together. We all miss each other! Pray for peace amidst the juggling of each day while we are here.

And, please pray for Pete and I. For all of the usual suspects - strength, stamina, patience, discernment, energy, rest. All the things.

As always, we are so thankful for your prayers.

cycle 11

Tomorrow, Ethan begins cycle 11 of maintenance. CYCLE ELEVEN. Of 12. He won't even complete the full 12th cycle based on his end of treatment date and so really, Cycle 11 is the last full cycle of maintenance.

What?!?!?!?!!!

You guys, the end of Ethan's treatment is getting closer and closer. Once February hits we are in the 3rd month to go. After 3 years of this, to only have 3 months and some days left feels completely surreal. Exciting. Scary. Thrilling. Nerve-Wracking. Lots of feelings often felt at the same time.

But, tomorrow. Day 1 of Cycle 11, which means Ethan has IV chemo at the hospital (8:30am) and then will be sedated for intrathecal chemo at 10:30am. (Did I mention that after this sedation he will just have one sedation left? Seriously!)

Ethan has actually been battling a few sicknesses over the last couple of weeks. He's had a cough for almost 4 weeks now and about a week and a half ago came down with suspected pink eye, a sinus infection and then a couple days later, a double ear infection. He's been on antibiotics that are thankfully working and his labs have stayed stable. Tomorrow the team will assess whether he can safely be sedated for his intrathecal chemo since his cough is still lingering. You can be in prayer for him that his cough would be healed and that his day will go smoothly tomorrow.

There is more to write since this time of year brings with it many reflections as we remember everything that Ethan has gone through since his diagnosis on January 25, 2014. I'll write more on some of that another time.

For now, thank you for your prayers!