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!

on running a marathon

Oh, what a blessing to be HOME! Ethan was discharged on Thursday afternoon and so we have spent the weekend resting up and enjoying just being together. Pete has been out of town for work in Chicago and thankfully, Grandma Sheila is still here and plans to stay through Ethan's next scheduled chemo on November 9th.

As expected, I feel more tired now than I did in the hospital. This is normal and a typical part of "coming home." When you're admitted and managing life in the hospital it's sort of like a balloon that fills with helium. The adrenaline kicks in and carries us through the days and nights spent caring for Ethan at the hospital, caring for Eloise at home, managing work, and catching sleep when we can. And then we're discharged and HOORAY! Thank you Jesus. Such relief and thankfulness and getting to sleep in our own beds again.

At the same time, when we are discharged it's like the balloon pops, the adrenaline wanes and the tiredness sets in.

And so, we've rested. We've enjoyed mostly staying at home. (Did I mention sleeping in our own beds?) We even trunk-or-treated a little at the kids' school. And it's been good.

In November, Ethan will officially be in the 6th month to go. This last stretch of treatment feels a lot like running a marathon near the end of the race. Several years ago - before we had the precious two - Pete and I actually ran one, and when we we had maybe 5 miles to go, I remember feeling a jumbled mix of emotions. Disbelief at how far my legs had already carried me, an acute awareness of how tired my body was, and excitement that the finish line was so close. Running the last 5 miles meant continuing to put one foot in front of the other, staying the course, and eventually getting to the finish line.

That's pretty much exactly how I've been feeling lately. I can hardly believe that we've been doing this for over 2.5 years now, we are, of course, tired, the end of treatment feels so close, and yet there are still miles to go before we get there. It's all the feelings, all at the same time.

As the fuzziness from tiredness has started to clear while we've taken the last few days to rest, my mind keeps returning to one of my favorite hymns Come Thou Fount, particularly the second verse:

Here I raise my Ebenezer,
Hither by Thy help I've come,
And I hope, by Thy good pleasure,
Safely to arrive at home.

I'm thankful to the Holy Spirit for bringing me back to this hymn and this verse. Because I'm reminded again. Of God's goodness. Of His help. Of all that He's done to sustain us in the last week. Of all that He's done to sustain us over the last 2.5 years.

And you guys, I need to be reminded of these things. Of who God is. Of what He has done. It is balm for my weary soul in the midst of a story that so often I wish could be taken from Ethan and from us. God is faithful. He is good. And He loves us. It is His strength and His grace and His mercy that carries us through.

And so, faithful friends, thank you for your prayers. Our 6 night stay in the hospital was the second longest stay we've had during Ethan's treatment, and his counts were the lowest they have ever been (His ANC was 0 for three days before it started to increase). His oncologist told us that the parainfluenza virus (that Ethan tested positive for) was typical for causing such a drop in counts. Thankfully, after a couple days of slowly increasing, his blood counts really started to go up, leading to our discharge on Thursday, and this weekend things have continued the upward trend. We are grateful.

And, because Ethan's treatment continues even in the midst of recovering from a virus, he resumed his oral chemo on Thursday night (this had been on hold for over two weeks while Ethan was neutropenic). His next IV chemo is scheduled in a week and a half on November 9th. On that day, Ethan will start Cycle 10 (of 12), which means he has a scheduled sedation for intrathecal chemo, IV chemo, and will begin his monthly 5 day steroid pulse.

The marathon continues as we press on; there are still miles to go. 

We would appreciate your prayers for continued protection for Ethan and Eloise from any further viruses, safety during Ethan's sedation and chemo next week, and for continued rest for our whole household as we get back into our normal routines of school and work and chemo. We are so very thankful for your prayers!

still admitted

Okay, I blog and tell you that Ethan is admitted, and then I just leave you hanging. Geez. Sorry about that!

And now for an update: Ethan is still admitted, with today being day 5. His counts started to increase slightly yesterday (Monday), but then decreased a little today. The team assures us that this is all very common for the parainfluenza virus that he tested positive for, as well as for a kid who is in the last part of maintenance. Because for real. His body has experienced over 2 1/2 years of chemotherapy and his bone marrow is tired. And because it is tired, it can take a little longer to regenerate the cells he needs to fight off this virus.

And so, we are basically in a watch, wait, rest, and wait some more cycle. Ethan will remain admitted until his counts start to increase steadily, and so we are here for at least a couple more days while we wait for his body to recover. We are incredibly thankful to friends and family who have prayed for us, helped with Eloise and brought coffee or a meal to the hospital over the last couple of days. The best news of the whole week is that Grandma Sheila (my mom) was able to come back to St. Louis to help us out. We are all just thrilled to have her here!

We have so appreciated your prayers and would ask that you continue to pray for Ethan and our family. Here are some specific ways:

• Pray for Ethan's bone marrow to regenerate healthy cells that will help to kick this virus to the curb. 
• Pray for rest and sleep for Ethan as we continue our hospital stay. Because of the virus, we are on isolation, which means he can't leave our hospital room. Pray for patience as we continue to navigate each day!
• Pray for sweet Eloise, that as she navigates this hard week she will continue to know how loved she is.
• Pray for rest for all of us, in all facets. 

Thanks again, faithful army.