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. 

admitted

A quick note to ask for your prayers. We have had a rough couple of weeks with both of our kiddos being sick with a couple of different bugs. Ethan came down with a cough and fever two weeks ago (following in Eloise's footsteps) and so we had an ER visit that showed he tested positive for two viruses. After that Ethan's blood counts began to drop because of the virus (this is common because he is immunosuppressed), and so he has been on an oral chemo-hold for almost two weeks now, while we wait for his counts to improve.

Yesterday Ethan woke up early with another fever and so we headed back to the ER where he again tested positive for one of the same viruses he had two weeks ago. His labwork came back showing that his blood counts have dropped even lower and so we were admitted yesterday and we have been in the hospital ever since. We will be here most likely through early next week while we wait for him to get over this bug and for his blood counts to begin to increase.

And so, we covet your prayers. We thankfully don't have to experience hospital admissions as often anymore, but as you can imagine, we have to do a lot of juggling to take good care of both Ethan and Eloise, while Ethan is in the hospital.

A few specific prayer requests:

• For Ethan's health and protection. While his blood counts remain so low he is at greater risk for infection because he doesn't have a lot of healthy cells in his blood to fight. Please pray that his body heals from this illness and that his blood counts begin to increase. 
• For Eloise, that she would have peace and comfort and know how very loved she is. 
• For Pete and I to have discernment on how to best structure and juggle our time with the hospital, work, home, and both kids. 
• For good rest and sleep for all. 

Thank you for praying!

cancer in the front seat

I've been quiet on here, I know. Part of it is because summer has been busy and flying by. Our days have been full with summer everything, and I've still been getting used to managing home and work and kids and chemo, and so I haven't been leaving much time or space to write.

If I'm honest though, the silence is not just because of busyness and managing all of the fun and bumps that come along with our full plates.

If I'm honest, the truth is, during the last few months it feels like cancer has sort of taken over the front seat. And that's left me searching a bit for what to say.

Now, this has nothing to do with Ethan's treatments or his progress. His treatments continue to go along as planned and if you have followed our story for the last couple of years, you know that Ethan's cancer has been in remission from the first month into his treatment in March 2014. Now that we've turned the page to August, he has 9 months (and some days) to go. Next week he starts cycle 9 (of 12) of his Maintenance therapy. Things are moving along as planned, which is a huge blessing that we are incredibly grateful for.

And yet.

It actually started on our Make-A-Wish trip. You guys, that trip was absolutely the most wonderful trip and we had the absolute best time.  I'll get a separate post up about that later, because really, it was just incredible.

But the thing that happened on our Make-A-Wish trip is that all of a sudden, cancer was known again. People we had never met all of a sudden knew just by looking at us at the parks, on the plane, wherever we went, that we were on a special trip and that Ethan was a Wish Kid. Ethan had a great Make-A-Wish button that he had to wear (and it really was great, because it basically got us fast passes on all of the rides and A++ treatment - seriously!), and it told everyone that we came in contact with that we were on a trip because he got to make a wish. Because he has suffered a life-threatening illness. Because he had cancer.

The sadness of your child having had cancer just does not go away, you guys. And sometimes, that sadness is felt more acutely than at other times, no matter how much time has passed since this journey began. This week I had jury duty and I tried calling the jury office to see if I could get out of it because seriously - all the things, and the lady on the phone kindly said to me, "Honey, here's what you're going to do. When you go, there will be an announcement about people experiencing hardship and when that happens, you go up there and you tell them about your baby and his treatment."

My baby and his treatment.

On Friday I sat with a neuropsychologist at an appointment with Ethan, who described to me some of the possible late effects that may occur because of the chemotherapy and radiation that Ethan has received. That felt pretty much how you imagine it would. And yet that's the reality of cancer. The medicine that is used to eradicate this disease is so powerful that it can damage other parts of his body and brain in the process.

Can you see how cancer has been making it's presence known these last few months? 

And yet.

Somehow, even in the midst of a couple of months where I have felt the heaviness of this journey weighing on my heart, God is reminding me of who He is and what He does. That He brings life, even in the midst of the sadness. That out of the darkness He brings light.

Last week, our church enjoyed a night of singing hymns together. After one of the hymns, we read this passage:

"I have rebuilt the ruined places and replanted that which was desolate. I am the LORD; I have spoken and I will do it." 

Ezekiel 36:36

Oh, what the LORD can do! He can replant. He can rebuild. He can renew. He can bring life. Even in the midst of a storm. Even in the midst of a season that brings so much uncertainty and unknown. Even in the midst of a summer where cancer seems to want to shout at me so often of the many things it has touched. 

And so, dear friends, thank you for your continued prayers. The reality is, cancer is a permanent part of Ethan's story and our family's story. But even in times where that reality feels most weighty, it's not the biggest story. The biggest story is that God is who He says He is and He has done the most amazing thing by sending his son Jesus to enter into this brokenness - my brokenness, into the darkness of sin and sadness and a world that is not as it should be. Jesus came to rescue us from the brokenness of our sin and he brings us into new life. Even in this stormy, rocky season of suffering, He renews, restores, and strengthens. He brings life to the desolate places of my heart. What a Savior!

"I waited patiently for the LORD; 

he inclined to me and heard my cry.

He drew me up from the pit of destruction,

out of the miry bog,

and set my feet upon a rock,

making my steps secure.

He put a new song in my mouth, 

a song of praise to our God."

Psalm 40:1-3

milestones

A quick post tonight to share all of the milestones we have been celebrating lately!

First, we celebrated the end of the school year for both kids - Eloise finished up her first year of preschool and Ethan graduated from preschool! 

Just a few days before school was out, Eloise unfortunately broke her foot - another milestone of a painful sort. She fell awkwardly off of the monkey bars and had 3 fractures in the bones on the top of her foot. She was quite the trooper though, and thankfully she only had to wear a walking shoe/boot for a few weeks. We had a checkup a week ago and her foot has already healed! 

Our sweet Eloise also turned 4 years old on May 28th. This girl! She just LOVES that she is now 4 years old. Oh how she is such a delight!

We also celebrated Ethan's 6th birthday on June 6th! My favorite memory from his birthday was when he first woke up and came walking out of his room with his hands in the air, with excitement: "I'm 6 year's old!!!"

Finally, we are all feeling a little bit giddy because tomorrow, we are off to Disney World!!! 

Because of all that Ethan has been through he got a chance to Make-A-Wish, and he wished to go to Disney World! We have been working with Make-A-Wish Missouri over the last few months to set up Ethan's trip and finally it's here! We are all so excited! It's an incredible blessing for Ethan to be granted a wish - and we hope and pray for a week filled with lots of laughter and memories together as a family! 

turning the page: from years to months

Friends! My goodness, it's been a long stretch since I've written. And for good reason... we have been having ourselves a very busy spring!

Where to begin? Let's start with our biggest family life change... (drum roll)... I'm a working woman once again! I started working full time in February at our church in the human resources department. Yes, a major life change, and one that's been exciting and challenging all at the same time as we learn how to navigate life as a family with two working parents. Thankfully, for the most part, things have gone fairly well so far.

Ethan has been doing pretty well too. Gosh, he is such a trooper. We had a 3-day hospital stay in March because of two viruses that tanked his blood counts and it took some time for him to recover from that. In two weeks he will start Cycle 8 (of 12) on May 25th, which will include a sedation for intrathecal chemo, IV chemo, and his 5 day dose of steroids.

We are looking forward to his preschool graduation on the last day of school as well - next year our boy is on to Kindergarten! And, in less than a month he's turning six. SIX!

Eloise has continued to blossom and chatter all of the time. She loves her ballet class and loves to tell us about pretty much anything and ask us "why" about everything. She dresses herself in her very own unique style (think dresses, layered with skirts and t-shirts in mixed prints). Somehow, she turns 4 years old on May 28th. This girl is beyond precious.

And probably the thing that feels most grand is that this month we begin the countdown of 12 MONTHS TO GO of Ethan's treatment, if everything continues as planned.

You guys. 12. Months. To. Go.

When Ethan began this treatment, it felt difficult to even compute in my mind what 3.5 years of treatment meant. Our boy was only 3 1/2 years old at the time, and I remember thinking, you mean he's going to be almost 7 when this is done? How is that possible?

And now, here we are, hitting another milestone. Now, instead of counting YEARS, we start counting MONTHS. It feels big, and I'm thankful and grateful and nervous and joyful all at the same time.

Since we always treasure your prayers for our family, here are ways you can pray for us:

• Pray for Ethan's continued healing from leukemia and for protection from the negative effects of chemotherapy. 
• As Ethan grows older, he is learning and understanding more about his treatment and even about leukemia. Pray for his heart and mind to learn what is needed and pray for us as parents to have discernment in talking with him about all that he's gone through. 
• Pray for our family as we continue to navigate this new chapter of having both Pete and I working.

Thanks for continuing to walk with us on this long journey, friends. We are thankful for you!

two years

Two years ago today, our precious boy was diagnosed with leukemia.

In the couple of months leading up to that day, Pete and Ethan were working on memorizing Psalm 16:8 together:

I have set the Lord always before me;

Because He is at my right hand I shall not be shaken.

When Ethan was diagnosed, this verse became sort of an anchor for us. It felt more than coincidental that this was the memory verse at the time Ethan was diagnosed - we sensed God's provision. He was going before us. Because He's with us, we won't be shaken. Even in something as horrific as pediatric cancer, God was with us and I felt a strong sense of God's sovereign hand over the pages of my boy's story. 

And then just the other day, I learned something new about this Psalm. Pete and I are reading through Tim Keller's new devotional book on the Psalms (The Songs of Jesus) and regarding this particular passage, Keller says this: "The Lord is at our right hand. To be at someone's right hand is to be their advocate in court or support in battle or companion for a journey." (p.23)

Our support in battle. I think I stared at those words for minutes. God has been our support in this battle. He has been faithful to stay with us on this journey. And before we even knew this whole thing would happen, God started the preparation in our hearts by memorizing those words - that He is always before us, He is at our right hand, our support in battle, and because of that truth, we shall not be shaken. It is God's work. 

So, that led me to thinking about the battle that we've been in. The battle Ethan has faced. All that's happened over these last two years. Remembering what God has done. 

Here's a look back, friends. And thank you for all that you've done to support us, pray for us, and walk with us over the last two years.