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!

cycle 2

Tomorrow (Wed Jan 7) Ethan starts Cycle 2 of his Maintenance phase. What that means is that we basically do what we just did from October until now, as Maintenance is the same 84 day cycle that repeats again and again until his last day of treatment in May 2017.

So, tomorrow we begin Cycle 2. We have a full day that involves meeting with his team, receiving one IV chemo and his immunoglobin infusion, and he will also be sedated for intrathecal chemo. He will also start his 5 day dose of steroids for the month tomorrow as well.

I've been reminded lately about the importance of this phase - Maintenance. That even though the side effects aren't as brutal, the chemo he takes every day or weekly -- all of it is so important to his treatment, and is purposeful in helping to maintain his remission. Please continue to pray for Ethan's remission - that this chemo would continue getting rid of any trace of cancer and keep any new cancer cells from growing. 

This will be the first time since October that Ethan has had to be sedated. Since it hasn't been as routine as it was (during the first 8 months he was sedated at least twice per month on average) -- we would definitely appreciate your prayers for Ethan for comfort and protection during the procedure but also from anxiety and fear. His sedation is scheduled for 10:30.

We've also been navigating some new waters with physical side effects from chemo that Ethan has been working on in Physical Therapy. Perhaps more on that another time, but for now, please pray for comfort for Ethan and for us all to figure out the best way to incorporate some new treatments at home.

Thanks for continuing to pray for us, guys.

holiday(s) wrap up

Now that it's a new year, it's time to wrap up the holiday season for 2014. I'm going to go way back to Halloween, just in case some of y'all didn't get to see my precious two and sweet niece Ella and handsome nephew Noah in their sweet costumes.

Moving on to Thanksgiving, where I just didn't take a lot of pictures as it was a bit of a whirlwind - enjoying time with family in town and helping my sister get ready to move to Minnesota. I did get a few faves. 

Ethan and Grace (who were together like together that weekend)

And all 4 littles here. One last group photo before the big move!

We capped off Thanksgiving weekend with Pete's fam. Here are the cousins on that side of the family... so grown up!

And the whole Weseloh clan

On to Christmas! We got to see Ethan in a special concert with his classmates. Here are a couple of his biggest fans waiting for the show to start.

Our guy, who did SUCH a great job!

My dad and step mom came to hang with us at Christmas which was a total blessing.

Christmas Eve at Pi (a local pizza place). I've never been out to a restaurant on Christmas Eve before but it was actually kind of fun! Might be a tradition for next year too!

And then, Christmas morning. This has to be one of my all-time favorite pictures!

Although this one might also be in the running. Oh these two!

And finally, New Year's Eve! We got to celebrate with friends, the kids had a blast blowing their horns, and we even had a pretty epic dance party to help ring in the new year.

And that, my friends is a holiday wrap.