the love of God

You guys can tell by now that our family loves to sing. Ethan often leads us in this charge - asking us to sing his favorite songs or play a certain song in the car while we are driving pretty much anywhere.

It was probably about a month ago when Ethan and I were on our way to his scheduled chemo and sedation for intrathecal chemo at the hospital, when I noticed a big theme in all of the songs that Ethan selected: each song was about the immense love of God. (His playlist that day included two revamped hymns we sing at our church: What Wondrous Love is This and The Love of God, and Oh How He Love Us by The David Crowder Band). I remember thinking, my five year old just created a worship set - holy cats, what a gift!

It's no secret that the last couple of months have been rougher than we've experienced in a while. Ethan has experienced an uptick in chemo symptoms, been neutropenic twice, had two blood transfusions, a day in the ICU, and a 3 day hospital stay. This all on top of his regular medicines, appointments, infusions, and just daily life of school and home.

Which is why I'm sort of marveling that my son continually wants to sing about the love of God. In the muck and trenches, it's had me thinking. A lot.

Hang with me, while I try to explain.

Throughout this journey one of the things that I've been grateful for is an overwhelming sense of God's sovereignty. That He's bigger than this. The He knows everything. He knew that this was going to happen. He knows all that is to come. It's brought such a sense of security and hope - knowing that God is in control of this. That aspect of His character has been a strong foundation and a place of rest in this journey. God is sovereign and He's got this.

And then there's the daily experience of watching my son endure this suffering. Trying to help him get through this. Watching this boy and his amazing resilience and walking with him on the good days and the days that are just tough. Knowing what helps one day, and then feeling like I don't know anything. Navigating the waters of what things to share and bring people into, and what to keep close to our hearts. This journey just isn't easy, and there is no roadmap for what to do at each turn.

I sent a sort of desperate text to my sister recently on a particularly hard day, telling her that there are just days that I want to scream. At the top of my lungs, just scream about it all - how I wish this wasn't a part of my boy's story, how I wish God could just take it away, how hard it is.

And my sister replied with a reminder of what my friend Evie told me at the very beginning of this whole journey - that I can't do this. That it will be God's strength, His endurance, His power that will get me through.

And then she said: But you know that you can scream to God, Melissa. 

And you guys. I sat on the couch and experienced God's love in a whole new, deeply personal way that is hard to even put to words. As I started to pray and ask that God meet me, I had the most overwhelming image of God, my Father, wanting me to just come to Him. To be with Him. To sit on His lap and to just tell Him how I felt. To tell him how my heart ached for my boy. To just cry about it with my Father and just be in His presence. There was no doubt in my mind that my Father just wanted to be with me and to know my heart.

You guys, that is the love of God. He showed me in those moments that He is a God who longs for intimacy with me, and with his people. That He is a deeply personal God who wants to know my heart. He is the big God who is sovereign over all of creation, and yet He knows each one of our hearts. It's amazing. It's that love that sent Jesus to die. That God the Father actually sent his only son to die, that we might be saved. That Jesus loved us so much that He was willing to die.

That is the love that I want to forever keep singing about. What I want my children to know in the deepest parts of their hearts. What I want you to know. That God's love is real. It's powerful.

And it's the reason that we sing. 

And so I'll leave you with, what else? A song. Of the three songs that Ethan and I sang on the way to the hospital that day - The Love of God stood out and has been playing in my head on and off ever since. Take a listen. It'll be worth your time.

To write the love of God above
Would drain the ocean dry 
Nor could the scroll contain the whole
Though stretched from sky to sky

still admitted

A quick update this afternoon on how Ethan's doing:

We are still admitted to the hospital (today is Tuesday) and will likely be here at least one more night if not longer. Ethan tested positive for a cold virus, and his team also suspects that also he did have some bacteria in his central line because of what happened on Sunday morning when they were having trouble stabilizing his vitals. His counts have gone down since our admission on Sunday, which is the reason that we're still admitted. His hemoglobin was low enough yesterday to need a blood transfusion, which has greatly helped his energy. 

Today he definitely seems to be feeling better and has more energy, so I'm hopeful that it's a sign that his body is recovering. Because he is neutropenic, all of his oral chemo has been put on hold until his counts recover. We will have to stay admitted to the hospital until his counts start trending up.

You guys, this is our first hospital admission in 15 months. 15 months! After shaking off a little bit of my own rust on how things work when we are admitted, we've gotten back "in the swing" of things and the time seems to be passing relatively quickly. 

Side note: Eloise beaming and snuggling with her brother...

Brings me right back to our first week when she did the same thing...

What's amazing to me is even though it's been such a long time since we've been admitted --- we've got a community of people who all just pick up where we left off before. Help with Eloise? Done. Making a meal? Done. Coffee to the hospital in the morning? Before I even ask. Emails and prayers and updates sent out? Taken care of.  It's a dance we've done before, and I'm grateful for the friends who are here to walk with us as we shift back into hospital mode. 

Thank you for your continued prayers for our boy. Please pray that Ethan's body continues to heal from the virus and possible infection and that his counts recover. Pray for patience and stamina. Pray for our girl, that she would be well taken care of as Pete and I juggle things while Ethan is admitted. 

Thanks you guys. We are so grateful for your support and prayers!

ICU

One night we are celebrating Ethan with our friends and family at Light the Night, and the next morning we are in the Pediatric Intensive Care Unit.

I'll start with the celebrating. That happened last night (Saturday). And you guys, what a blast. And just an honor and blessing to be able to walk at Light the Night for our second year, surrounded by friends and family. Ethan danced and played and walked and danced some more! It was so much fun and we came home with full hearts, thankful to get to surround Ethan with love and cheers and encouragement.

It was actually during the end of Light the Night that Ethan started complaining of some ear pain. We got home and I gave him some pain meds, and he had a slightly elevated temperature, but not a true "fever" by definition, and so we were fine to watch him at home. This morning at 4:30am, his temperature had spiked to 101.8 and so we headed to the ER.

My last update on the blog was 2 weeks ago, when his counts had gone down and his oral chemo had been put on hold. On Wed 9/16 he was able to have his scheduled IV chemo and intrathecal chemo at the hospital, and because his hemoglobin had dropped, he also received a blood transfusion. His oral chemo was able to be restarted this past Monday because his ANC went up, but because his oral dose of chemo is so high, they had us scheduled to get labs again in a week or two, just to make sure he didn't become neutropenic again.

Which brings us to today. Because Ethan spiked a fever this morning, we of course had to head to the ER, where we typically have labs and cultures drawn, and Ethan will get a dose of 24-hour antibiotic and then we are sent home, as long as his counts are high enough.

Today we started down that path but things changed quickly. That's the thing about this journey you guys: things can change so very quickly.

The way Ethan's vital signs were showing, the ER team felt that he could very likely have a blood infection and possibly could be going into septic shock. We spent several hours in the ER while the team went through their protocol and then we were transferred to the PICU so that Ethan could be more closely monitored. Thankfully, Ethan's vital signs had started to stabilize right when we arrived in the PICU and so after spending the day there under close monitoring, we were able to be transferred to the Hematology/Oncology floor this evening and Ethan is sleeping soundly now.

The plan now is to continue a heavy course of IV antibiotics and his team will monitor his cultures for any signs of bacterial growth. His oral chemo is again put on hold until his counts recover. He will likely have to be admitted for at least 48 hours while they monitor his cultures, and we will likely go home on IV antibiotics as well.

But, he is much improved from this morning, and for that we are so very thankful.

Ethan's friends and sweet Eloise helped to make this sign for him today - it's hanging up in our hospital room here, a great reminder of our beloved TEAM ETHAN -- all of you, who are willing to pray and help and be there with and for us as we walk this road.

Here are our specific prayer requests tonight:
-Please pray for Ethan's body to be healed from whatever infection or bacteria or illness is present.
-Please pray for his counts to recover
-Please pray for rest for Ethan and me as we get used to being admitted to the hospital again (It's been over a year since we've done this!)
-Please pray for protection from anxiety and fear
-Please pray for sweet Eloise to feel cared for and loved well

low counts

Just a quick note to ask for some prayer for Ethan. The last few weeks Ethan has been experiencing some increased symptoms that have had us in touch with his team at Children's. He's had some belly pain and his liver enzymes were elevated a few weeks ago, and have thankfully come down over the last week or so. Over the last week or 2 he's also been fighting a croup virus that it seems every kid's got around here, and we had to take a trip to the ER on Friday morning because he spiked a low grade fever.

We've kept things low key over the weekend to help his body kick this bug and got his scheduled pre-chemo labs this morning (Monday), which showed that his ANC is pretty low and he's neutropenic (at greater risk for infection because his body doesn't have a lot of white blood cells to fight viruses). His hemoglobin is also low.  This can occur when a virus happens, as his body and bone marrow don't function "normally" because of the chemotherapy he gets every day.

So, for now we get to hold his oral doses of chemo that he takes each day until our clinic visit on Wednesday. We will get repeat labs done then to check his counts, but for now the plan is that he will still get his scheduled dose of IV chemo and potentially still go ahead with his sedation for intrathecal chemo as well. We will wait and see what Wednesday brings.

We would love for you to pray for Ethan, as you've done so faithfully. Here's a few specific requests:

• Pray for Ethan's counts to recover and improve, and for his bone marrow to continue making healthy cells.
• Pray for rest and healing from this virus and for protection from any fevers or other illnesses.
• Pray for protection for Pete and (especially) me from fear, anxiety and uncertainty.

What I love about Ethan, you guys, is just his continued joy. Even this weekend, after a trip to the ER and being tired because of his low counts, he's still got his joy and that exuberant spirit. Right now, even as I type this, he's singing in his room. Today, when we got to school, he gave a huge hug to his principal. He is such a treasure and delight. 

And, he's really been singing a lot. In Journey Kids (our church's kids program), the kids have been learning a new song, "What wondrous love is this," during their worship time, and Ethan wants us to play it ALL.THE.TIME. And so, we have. Because it's good to sing you guys. In the joy and the uncertainty, Ethan is showing me how to run toward God, to move toward worship. And it's good. 

Here's a link to our church's version of What Wondrous Love is This, that we've been listening to on repeat. It's pretty awesome guys. I encourage you to play it, play it loud, and sing and dance with us.  

halfway! & light the night

September.

For us, there's a lot that this September means. For one, we are reaching a huge milestone in Ethan's treatment, because this month he is HALFWAY THROUGH HIS TREATMENT! Ethan has completed 20 months of chemotherapy and has 20 months to go, with his last month scheduled to be May 2017. He has come so far and there's a long road ahead, but this month feels like a big deal. Halfway. Thank you Jesus.

We are also getting ready this month to have TEAM ETHAN represent and celebrate with Ethan at the Leukemia & Lymphoma Society's Light the Night Walk on September 26th. You guys, last year was our first year taking part in this event and it was an absolute joy and huge blessing to have a team of over 40 friends and family come to Forest Park to celebrate and walk with Ethan at this event.

For those of you who don't know - Light the Night is one of the biggest fundraiser's that the Leukemia & Lymphoma Society puts on each year. Last year we were able to raise almost $7000 for LLS from all of your generous donations to our Light the Night team and to our efforts for the half marathon that we ran. Our Minnesota Light the Night Team raised over $10,000. It was incredible!

We would love it if you would consider supporting our Team Ethan again this year - every $1 truly makes a difference. You can make a tax-deductible donation on our Team Ethan website by clicking on this link here:

http://pages.lightthenight.org/gat/StLouis15/TeamEthan

If you live in St. Louis and would like to walk with us at Light the Night all you need to do is send me an email at melissa.weseloh@gmail.com to let me know you'll be there. We would sincerely love for you to join us - we'll have food to eat before the walk begins. I can't even tell you how excited Ethan was to have so many friends join us last year. So if you can be there - email me and I'll add you to our team list! :)

As for Ethan's treatment - he starts Cycle 5 on Wednesday September 16th, so that will include a sedation for intrathecal chemo along with his monthly IV chemo and the start of his 5 day steroid dose. We had some extra labs done last week because he's been experiencing some extra belly pain over the last couple of weeks and his liver enzymes were elevated, but not high enough to make any changes or do anything but wait and see what they are on September 16th. As always, we are grateful for your prayers and ask that you keep our boy covered in them.

Thank you for all that you've done to continue to support Ethan and our family. The fact that September is also Pediatric Cancer Awareness month sort of makes things feel more heightened - all that Ethan's endured. What he's got ahead of him. The fact that he's not alone, and that there are thousands of other kids who have also experienced cancer. Thank you for wanting to take time to read about Ethan's experience and enter in to his story. We're so grateful for your support.

the gift of summer

A couple of weeks ago, I went for a run. On a country road I've run a whole lot of times before. In a place that is one of my favorites in the whole world. 

And I found myself stopping to take pictures. Almost giddy, really, to actually be running in this place. 

Pictures of this.

And this.

And this.

Because you guys, we got to go to Minnesota. MINNESOTA! Can you feel my joy through the computer screen? These are pictures of the road that leads to what was once my dad and step mom's house but is now my sister and brother in law's house. And this was the first time we traveled to Minnesota in over 18 months. Eighteen months. 

Our last trip to Minnesota was at Christmas in December 2013, about a month before Ethan's diagnosis. And so the last time I was in my sweet home state of Minnesota in the summer was two years ago. Two whole years and a whole different world. 

It was probably one of the first laments I had when Ethan was diagnosed. That we wouldn't get to go to Minnesota for such a long time - especially to that country road all the way in rural, northern Minnesota where my dad lives. At the start of all of this I didn't see how the heck we would ever feel comfortable traveling anywhere really, but especially to northern Minnesota where sure, there are hospitals, but not like what we have here with the blessing of our Children's hospital. 

And yet you guys, this summer our world got a whole lot bigger. 

You see, when Ethan was first diagnosed with leukemia 18 months ago, the world as we knew it got incredibly focused on one thing - Ethan's cancer and Ethan's treatment. Most things revolved around that - the treatment, the hospital, the side effects, the risks.  It was all that we could really focus on, understandably. And little by little, as the months have gone on, we've slowly taken steps and seen how the world has gotten bigger. Some have been pretty small steps (that have felt pretty big) - like going home from the hospital for the first time, or trying a restaurant for the first time, going to church. Others have been big steps - Ethan getting to go to preschool for most of this past school year, getting to take our first weekend away in January to Kansas City, spending another weekend away in Omaha with our Bethel hockey family in May. And then in June, getting to go to Minnesota and visit family that we have missed so much --- it was like the exclamation point on how much our world has expanded. And oh, what a BLESSING.

And what's funny, but not funny - maybe ironic? - is that our time in Minnesota actually didn't go as planned. Our plan was to spend a night in Minneapolis, then head up north for 4 days, then back to Minneapolis for 3 days or so before heading home. If you can believe it, we spent 2 of our 4 days up north in the ER with Ethan because he spiked a fever with a virus that he picked up (We haven't had to go to the ER since January, hence the irony). And then we rushed our time in Minneapolis by a day or so because we wanted to get back home to rest up for the following week's scheduled big chemo and sedation for intrathecal chemo. 

And so, it didn't go as planned. And to be honest, I cried a lot of our drive home to St. Louis (because it's one thing to miss your family but another to experience your family and then have to leave again). And yet, thankfully, the lasting impression that has been stuck on my heart since we've been back from our trip has just been an abundant sense of joy.  Such joy that we actually got to go to Minnesota. 

And it's sort of stuck as the overwhelming impression of summer this year: 

Joy.

That we are having a summer. Going to the pool. Playing at the park. Eating ice cream. Running through the sprinkler. Today, the 4th of July parade. It is such a delight and joy to do these things you guys, and to make these memories with my babes. I find myself wanting to just cherish and soak up every last second. 

Here are some pictures to prove my point. A photo journal, if you will, of the last couple of months. 

We went to Omaha for a long weekend with friends.

Eloise turned 3! on May 28th.

 Ethan turned 5! on June 6th.

We had a super fun pool birthday party with friends. 

Grandma Sheila came to visit for two whole weeks!

An afternoon baseball game, which went as you might expect it did - but making it 3 whole innings was actually pretty great! :)

Lots of "racing" these days in front of our house. 

And then, Minnesota. I didn't even get pictures with everyone we got to see - but here are some highlights. 

And today, we enjoyed the 4th of July parade here in St. Louis. 

As for treatment, that's continuing too, of course. Ethan started his 4th cycle of Maintenance last week (he will likely have 12-13 cycles total), which included a sedation for intrathecal chemo as well, and all went well. This cycle will last another 84 days and then we'll begin the next cycle in September. I'm also in the midst of a small outbreak of shingles which has thankfully not been too terrible, but of course, has added some concern for Ethan, as we don't want him to get the chicken pox. Thankfully it seems like I'm on the upswing, but your prayers for protection over Ethan are welcomed. :)

In summary, my friends: We are LOVING summer, and so very thankful for it. Just so very, very thankful. God has sure been so very good to us. 

Make a joyful noise to the Lord, all the earth!

    Serve the Lord with gladness!

    Come into his presence with singing!

Know that the Lord, he is God!

    It is he who made us, and we are his;[a]

    we are his people, and the sheep of his pasture.

Enter his gates with thanksgiving,

    and his courts with praise!

    Give thanks to him; bless his name!

For the Lord is good;

    his steadfast love endures forever,

    and his faithfulness to all generations.

Psalm 100

waves

Lately I've been thinking a lot about how cancer has impacted our life. I've had this imagery in my mind of the big beautiful ocean, and it's waves steadily hitting the beach - in and out, back and forth. Most of our daily life feels a lot like that - fairly steady and routine. Things are sort of rolling along, and though life is impacted by Ethan's treatment on a daily basis, it's thankfully not always taking center stage all of the time. 

And then sometimes, seemingly out of nowhere, the waves aren't so steady and rolling, but instead will suddenly take me under. I like to call this cancer PTSD. It might happen when I really think about what's happened this last year. It happens when I think about the future sometimes. There's a trigger, and suddenly I'm immersed in the grief pool, pulled under by a wave of sadness. 

It's ironic that I've been thinking of that imagery lately, because today was one of those "pull me under" days. Ethan woke up this morning and was definitely out of sorts - super tired and lethargic, complaining of some belly pain. He didn't have a fever so it was a toss up on whether or not to bring him in, but we decided to go in just to check, and of course he perked up quite a bit by the time we got to the hospital - so much so that I felt a little silly for bringing him in. We had labs done and a quick check up, with the decided culprit of his symptoms being a combo of a virus and allergies.

Ethan was so excited that Eloise came with today! And she stuck pretty close to her big brother, who loved showing her the ropes at his hospital. :)

Later today his nurse practitioner called with his lab results. His ANC is pretty high right now, which is likely due to the virus that he's probably got going on. But his labs also showed some potential issues going on with his liver. Which could be because of a virus. Or just a fluke thing that normalizes. Or because of the chemotherapy that's taking a toll on his liver.

Now, here's the thing: We don't know what's going on. It might all be just fine, or there might be more to investigate and figure out. At this point we don't need to adjust any of his medicines or really do anything, other than wait a week and recheck his labs. But the reality of a concerning lab result to a cancer mom like me is one of those waves that today, took me under. It's an in my face reality of my precious boy fighting a terrible disease with medicine that is incredibly powerful but can also be damaging to his body.

But, here's the other thing, you guys: God continues to meet me in the depths of this journey. He doesn't leave me in my grief. His presence is real. 

Last week a couple of friends from my community group and I were meeting for our usual weekly morning coffee and prayer time and we got to talking about God's power and His love. That His love is present in the depths of our suffering, and that He doesn't abandon us in these places. We were refreshed to read in Romans 8:31-39:

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,

“For your sake we are being killed all the day long;

    we are regarded as sheep to be slaughtered.”

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (ESV)

At coffee that morning, my friends and I read these words and prayed for each other. And then when I got home, my exuberant and joy-filled Ethan just so happened to be belting out a song about God's love - "Your Love Never Fails." Like from the top of his lungs. This afternoon I thought of that song and my precious boy singing it, and oh what truth for my soul. Because you know what, you guys? God has not failed us. And he is with us, in the joy and in the sorrow. 

And when the oceans rage, I don't have to be afraid. Because I know that you love me - your love never fails. (Lyrics, Your Love Never Fails).

(I wish I would have gotten Ethan singing on video that morning, but since I didn't, here's a link to the song for you to take a listen if you'd like. It's on our family playlist almost every day. :) 

https://www.youtube.com/watch?v=IoezWBPGRAc )

I am going to ask y'all to pray for Ethan and am thankful that you will. Please pray that his liver will be protected, that it will continue to function properly, and for good lab results at our recheck next week. Pray also for this virus to pass quickly and for his counts to get back to a normal range. And for protection for all of us against fear and anxiety. 

spring and cycle 3

Hello Spring! I love this time of year when the temperatures start warming up, the sun is out, and things start to bloom again. And this year, we have been taking full advantage. I've been quiet on the blog probably mostly for that reason - we are out and about and having fun, going to parks and playgrounds and enjoying some semblance of a normal life, while still walking through the ups and downs that cancer treatment, and just life with two young kiddos, brings.

A summary of the last couple of months (a short summary, I promise!) in photos:

I took my first weekend away trip since Ethan's diagnosis - to Chicago in February. My friend Evie and I apparently spent so much time shopping and enjoying good food even in freezing cold temperatures -- that I have hardly any pictures! But here's one to prove it.

We enjoyed a late winter snowstorm. Really, one of the few times we had any snow all winter.

Let's see. Just lots of this happening. It is so fun to see my precious two not only growing up, but growing in their friendship with each other.

Ethan was a part of a Black History Month performance with his class at his school. He looked so handsome!

Eloise had her very first ER visit during a rough stomach bug. She's such a beauty, even when she's sick. And be sure to note that she was also wearing her princess dress. It's pretty much princess dress or bust these days.

Pete's grandma Dolores turned 87!

Sweet Eloise learned how to use the potty! In case you can't read her shirt, Ethan read it to her when we gave it to her and it says "Good job Eloise for pooping on the potty!" ;)

The zoo.

A new bike for Ethan.

Pete says it's like we are setting ourselves up for summer, which is so true. Last year, Ethan's team encouraged us to do a lot of what we're doing now, but most of the time it was just too hard or risky, or Ethan didn't feel well or his counts were low --- and so as we begin spring, it is just a huge blessing to be able to enjoy these things. We're loving it, and so are Ethan and Eloise.

And, while we enjoy these blessings and time outside and with each other, the reality of daily life of fighting cancer continue too. I know the pictures I'm posting today show happy smiles and bounding hearts, but the hard stuff is still there too. And we're learning --- how to process and manage medication and chemo effects, how to handle the hard days (for all of us), as we go along. When to take a step back and rest. How to be in community. When to say yes to things, and when to say no. How to continually submit the future and our fears and hopes of it, to Jesus.

We are about 5 months into Maintenance now, which means Ethan has been in treatment now for 15 months total, and has about 2 years and 2 months to go. He is scheduled to begin Cycle 3 of Maintenance on April 1st and Day 1 of each cycle always begins with sedation for intrathecal chemo. He will also have one IV chemo and begin a 5 day dose of steroids.

As always, we are thankful for your prayers for Ethan and our family. Please pray for Ethan, especially on April 1st, for protection during his sedation. And for protection from the harsh effects of chemo, now and in the future, and that his remission would be permanent.

Thanks you guys. And, HAPPY SPRING.

one year ago

It began like a sort of normal day, January 25th 2014 - one year ago today. Pete had an early board meeting and I got the kids packed up in the van to go to REI and buy Pete's birthday present, since his birthday was only 2 days away. It was while we were driving to the store - 9:30 in the morning, when I got the call from our nurse practitioner.  We weren't supposed to hear from her until Monday and so my stomach was in a total lurch. That phone call began the series of events that changed everything.

Ethan's bloodwork tests from the day before had come back showing some abnormalities. She didn't even have the complete results in front of her but the lab had called their office and she needed to speak with a hematologist at the hospital on what to do next. I remember how specific she was - she was going to talk with the pediatrician and he would call the hematologist and we would be called back in about an hour. And because she didn't elaborate, I asked the question "What could this mean?" And again, very careful, but specific, she said: Abnormalities could still point to an infection but could also be something more serious like a malignancy, or leukemia.

By the time I got off the phone with her, we were in the REI parking lot, and I thought, what do we do now? Go home? The kids were already excited to shop for Pete's present, and really, what else was there to do at that point? So, I texted Pete an update and we went into the store.

An hour later, at home and the nurse practitioner called again with our instructions: We were to immediately go to the ER at Children's, and be sure to pack a bag in case we needed to stay overnight. And so we flew around, calling who we could, packing bags, trying not to totally panic, and got to the ER as quickly as we could.

We weren't in the ER more than 10 to 15 minutes before the talk of Leukemia began. I remember Ethan was playing with a maze board on the wall and the doctor sitting on the bed, wondering what we had been told. She laid out the plan very clearly (why was it all so matter of fact? She was compassionate and yet so matter of fact) - repeat bloodwork to confirm the blasts in his blood, a chest x-ray to see if a leukemic mass had grown, and if it was all confirmed we were to be admitted, and Ethan would have a port-a-cath placed in his chest so that chemotherapy could be administered. I remember Pete asking several times if it was treatable. I remember calling my mom, asking if she was coming. And I remember just staring at Ethan, shocked that all of this was happening to my precious, exuberant son.

The day from there was one long blur. His chest x-ray showed a leukemic mass on 3 major areas - his pulmonary vein, trachea and aorta. His blood work confirmed blasts in his blood. We texted and called who we could, when we could. A new life had begun.

In the blur of that first day, there are a few moments that stand out. Once we got settled into our room up on the HemOnc floor, the hematologist came in and was just the most calm, reassuring presence. She sat there for probably an hour with us - answering every single question we had.  I remember asking her what I had missed, why didn't I notice this sooner? And she told me that I had done exactly what I should have done, because he was here. We were exactly where we needed to be. And he was in great shape to start chemo. And that this was a very treatable illness. In the midst of a freefall, the time she spent with us and her demeanor and presence was a true God-send.

And then there was a text from my friend Evie. I had sort of desperately texted her to pray for me, because I didn't think I could do this. How could I do this? And her reply will stay with me probably for the rest of my life. I'm re-reading it now to share with y'all, and it still encourages me just the same: "Friend, you can't do this. I've been praying that his power would be your power. Jesus is going to be your source in this, and he is going to get you through this... Ethan is HIS. He created him and he will protect him."

And my mom. Grandma Sheila. The next morning I woke up in our hospital room, pretty near despair and I called her so that she could just talk. Say something, anything. And as we (she) chatted and I calmed down, she said "Melissa, we aren't going to look at the whole thing right now, we are going to just take this one step at a time, and focus on that. Because that is all we can do." Again, a lifeline.

You guys, one year ago today, we had no idea what had just happened. We were in a shock zone, and the pieces began to fall and settle and little by little, we did get through it. We're still getting through it. But the reminder that I can't do any of this without Jesus, has been a lifeline in the dark days, the joyful days, the good and the ugly. And all we could do this year is take things one step at a time. This year, this life that has been so stormy, would have been impossible without Jesus. He has sustained us and has remained our anchor. He has remained our hope. 

And it also would have been impossible without all of you who have been such a strong support system of prayer and care and love. You cannot know how loved we have felt, how you have helped to get us through with your care packages and gifts and texts and meals and care. I could probably go week by week throughout this entire year and share different unexpected help or texts and care that has been given --- truly, you all have meant the world to us and we are so incredibly thankful. Really, thank you doesn't even begin to cover the depth of our gratitude - please just know that you have truly blessed us.

And so, today, here we are: one year later. I didn't know how I was going to feel today, this first "anniversary" of sorts regarding Ethan's diagnosis and treatment. And thankfully, you guys, more than anything, I'm feeling incredibly thankful. Thankful for what God has done this year. Grateful for his care and protection over our Ethan and all of us. Thankful that He has met us where we are, that He has been near.

Tonight we get to celebrate and gather with dear friends who have prepared a special dinner, for a time to reflect and pray and remember the year. And when they asked for feedback on what we'd want and how to pray, it became abundantly clear that one thing I wanted to do was to sing together. Singing has gotten us through much of this year. When there haven't been words, we've turned on a good hymn. In the happy and hard days, singing has been a way for us to cope, and to be renewed.

So in closing, I'll leave you with one of my favorites from this year - Cornerstone by Hillsong. It's a song that has been a theme for me this year. I know I've posted it before, but it's so good. Click the link below, if you want, and sing with us. We sure do love you all.

My hope is built on nothing less
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But wholly trust in Jesus' Name

Christ alone
Cornerstone
Weak made strong
In the Saviour's love
Through the storm
He is Lord
Lord of all

When darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
My anchor holds within the veil

When He shall come with trumpet sound
Oh may I then in Him be found
Dressed in His righteousness alone
Faultless stand before the throne

kansas city and the ER

This past weekend we decided to take our very first "vacation" away from St. Louis since Ethan's diagnosis! It was a last minute decision, but we wanted to take advantage of everyone being healthy and just get a chance to get out of town for a bit!

And really, we had a BLAST. Pete spoiled us and booked us a couple of nights at The Great Wolf Lodge, which is basically kid city with a huge indoor waterpark and tons of family-friendly activities. SO MUCH FUN. I'll let our pictures tell the story.

All in all, it was great to get a chance to get away and enjoy time together in a different city.

While we were in KC, Ethan started some minor cold symptoms and a pretty decent cough. Thankfully, it didn't escalate while we were in KC, but he did end up spiking a fever yesterday morning (Tuesday) and so we had to take a trip to the ER for labs, cultures, chest x ray, and a dose of IV antibiotics (which are always routine for any fever in case it is a bacterial infection). He tested positive for RSV, a respiratory virus and his are counts up, and so thankfully, we did not have to be admitted.

The sick trend continued today in our house with sweet Eloise starting a fever and some vomiting.

So, with all that said --- would you please pray that both Ethan and Eloise heal quickly from their sicknesses? And for protection for Ethan from any worsening issues from his cough/virus. We so appreciate your prayers for us!