more chemo

Well, Delayed Intensification is underway. Tuesday's chemo and sedation all went very well. In typical exuberant Ethan-fashion, he went sprinting down the hallway at the hospital on Tuesday to get to the elevator. Who has time for a mom just wanting to capture the moment?

Taking a look at the "forest" while we waited to meet with his team.

We've got another chemo day tomorrow (Friday 8/1) - this time Ethan will be receiving the chemo that can often cause an allergic reaction, so prayers to cover his treatment tomorrow are appreciated. After tomorrow his next chemo treatment will be on Wednesday (8/6).

So, we are back in the swing of all that chemo brings. Tonight we had a chance to go visit Ethan's school and meet his new teacher and assistant teacher that he will have this year. School starts August 18th, but we will have to play it by ear to see when Ethan is ready to go back. I was really thankful to have some time tonight for Ethan to meet his teacher and revisit his classroom, since he was only able to spend a handful of days in school since January.

Oh, and some really great news?

Grandma Sheila will be back tomorrow. Tomorrow! This has been the longest stretch we've gone (2 months) without a live-in grandma and so we are thrilled that my mom is back tomorrow to stay for a while.

Thanks for all of your continued prayers for Ethan and all of us!

chemo tomorrow

Monday labs are in and are much improved - Ethan's ANC is over 2200, way above the minimum goal of 750 to get started with chemo this week.

So, it's here - Delayed Intensification, the last rough phase of chemo before we get to Maintenance. His team scheduled chemo for tomorrow (Tues 7/29) - one day early due to schedule availability for his sedation. Ethan is scheduled to have 2 IV chemos at 8:30 tomorrow morning and then will be sedated for intrathecal chemo at 10:30.

And so, faithful army, we ask you once again to pray for our dearest, most exuberant son. Please pray for protection over tomorrow's chemo and sedation - both from short term side effects and long term as well. Please pray that this final trickle of snot of his is GONE tomorrow. Please pray for strength and stamina for all of us as we weather this next phase.

chemo on hold

Ethan had his pre-chemo labs done today and it turns out that his counts have actually gone down from last week and he didn't make the ANC goal of 750 that he needed to to start this next round on Wednesday. On top of that, he does have this runny nose/virus going on which could also possibly be contributing to his counts.

So, we are on hold until next week. He will have his labs checked again next Monday 7/28 and as long as he makes the 750 goal he will start Delayed Intensification on Wed 7/30.

Please pray that in between now and then, Ethan's runny nose/virus is healed! Eloise is coming down with it now too - naturally, so pray this passes quickly for everyone. Please also pray that his counts recover and that he makes goal to start chemo next Wednesday.

big week ahead

This week on Wednesday (July 23rd) Ethan is scheduled to start his next phase of chemo called Delayed Intensification.

Thankfully, we've had a chance to get out and enjoy summer a bit before this next round starts.

Ethan and Eloise got to have a special movie night with our friend Kelly while Pete and I got a date night out. 

Eloise has continued to be very particular about her clothing - we've started a very intense PINK phase - it has been days since she has worn a different color. Here she is in her swimsuit that she wore for 2 days straight. 

Last week we survived having Pete gone for 4 days on a business trip to Minnesota.

On top of Pete being out of town for the first part of last week, I ended up coming down with some pretty horrible stomach pain for a few days that I ended up going to the ER for on Thursday night. It ended up being something called gastritis (inflammation of the stomach lining) and after a few days on a few antacids I am definitely on the upswing.

Which brings me to the week ahead. As I've mentioned several times now, this phase of chemo could be rough. A lot like what the first couple of months were like - low counts, side effects, increased risk for infections, etc.

So, I've got a couple specific prayer requests for you as we start this new week and new phase:

1. Please pray for Ethan - protection for his body from the harsh effects of chemo both short and long term. Ethan also started a runny nose on Friday night that is still here - can you please pray that this illness will be healed quickly? Please also pray protection over Wednesday's chemo and scheduled sedation for intrathecal chemo.

2. Please also pray for me - my stomach issue last week was pretty rotten and I'm thankful that I'm on the upswing, but please pray that my stomach will heal.

3. Please pray for strength for this next round, for Ethan and for all of us.


Thank you all so much for continuing on this journey with us.

how you can help!

Faithful army,

We are entering into the final stretch of intense chemotherapy treatment that Ethan will have to endure. On Wednesday, July 23rd Ethan will begin the next phase called Delayed Intensification, that will last 63 days. As I've mentioned before, our team has continually prepared us for the fact that this will likely be a rough stage with lots of big gun chemos working to eradicate any tiny, hidden cancer cells that may still be lurking. The phase begins July 23rd and so will likely end by the end of September or early October.

And we would love your help. Really, we couldn't have gotten this far without our faithful Team Ethan and now is a time to rally up our troops for this next phase.  So, we have 3 tangible ways for you to get involved and help support us and Ethan:

1. Join the Team Ethan Prayer Team.  
We have been so thankful for your faithful prayers during this season of our lives and so during this next phase, we want to put together a specific team of people who are committed to praying for Ethan (and us) every day while he endures this next rough round of chemo. Grandma Sheila will be leading this team - a team we hope is filled with people from different cities and states - and will send out an email each day with a verse to meditate on and how to pray specifically for Ethan each day.
***If you would like to join the Team Ethan Prayer Team - send an email with your name and preferred email address to prayforethan@gmail.com***


2. Walk with Team Ethan at the Light the Night walk on September 27th. 
Light the Night is a national event held in hundreds of cities across the country where survivors and friends and family impacted by blood cancers all walk together in an effort to raise awareness and fundraise money for The Leukemia & Lymphoma Society to help find permanent cures for blood cancers and more treatment breakthroughs.

Light the Night on September 27th in St. Louis just so happens to coincide with the end of this next rough phase of treatment. Our goal is to gather a huge group of people - family, friends, friends of friends! - to walk together at this event in celebration of Ethan completing the toughest 8 months of his 3.5 year treatment. Our team captain is Auntie Lindsay who will be leading the charge for Team Ethan! Light the Night.

Please join us! To register to walk, visit our Team Ethan Light the Night website here:
http://pages.lightthenight.org/gat/StLouis14/TeamEthan

And click "Join" to register. If you'd like to help us fundraise you can also make donations on our website.

3. Help us fundraise for The Leukemia & Lymphoma Society with Team in Training. 
Team Ethan is also signed up with Team in Training - which is a branch of The Leukemia & Lymphoma Society where you can sign up to train for a particular race and also fundraise for The Leukemia & Lymphoma Society at the same time.

Pete and I are signed up with Team in Training to run the Rock N Roll Half Marathon in St. Louis on October 19th. Not only are we excited to get some running in but we are absolutely thrilled to be able to raise awareness and money that will go toward The Leukemia & Lymphoma Society to help with research toward more permanent cures for blood cancer and increased survival.

You guys, the research that has been conducted in just the last 30-40 years has completely changed the outlook on survival of blood cancers, particularly for children. 40 years ago, surviving a diagnosis of acute lymphoblastic leukemia (ALL) for 4-6 months was a miracle. Today - cure rates are in 80-90% for ALL - because of the treatment breakthroughs that have been made.

We want to contribute to the effort, but need your help to make it happen. Please consider making a donation to our Team Ethan Team in Training page - truly every dollar can make a difference. You can visit our fundraising page to make a donation, and learn more here:
http://pages.teamintraining.org/gat/rnrstlou14/teamethan

(And if you'd like to join our training team for the Rock N Roll (half or full) and fundraise with us, let me know and I give you more information!)

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So, three big asks but for a big cause. And you'll be hearing more from us on these opportunities but we wanted to get things rolling early! If you have questions, please don't hesitate to ask. I can't say enough how much we have appreciated the support and prayers. You guys - near and far - have been so good to us. We love you and are so thankful for you!

GO TEAM ETHAN!

the journey

Sometimes you're just walking along and suddenly, you step into a deep hole. Emotionally, that's what seems to happen on this journey that we're on. Things are cruising along and I feel like I've got a handle on the kids and the house, and Ethan's feeling okay and then, all of a sudden I'm in tears.

Take today, for instance. We enjoyed a beautiful morning at the Botanical Gardens with my sister and her kiddos. It was such a a blessing to see them after many weeks of time apart due to sickness on both of our ends and their travels to North Dakota. So, we enjoyed a morning stroll and the kids (and the moms) had a blast. 

The morning was sunny and bright! We were actually out and about and enjoying the summer! Ethan's feeling good! We're on a little break from chemo! 

Walking along. 

And then when we got home Ethan bumped his port on the counter in just a way that must have really hurt and suddenly he's in tears and I'm trying to help discern what's wrong and what to do next.  Once the crisis abated we were able to enjoy lunch. I got both him and Eloise tucked in for their naps and suddenly, that's when I stepped into the hole. And my own tears began. 

You see, there were a couple of times before Ethan's diagnosis when he had had a sudden outburst of pain in his chest like what he experienced today.  Looking back I've wondered if it was because of the leukemic mass that was starting to grow. Perhaps it was, perhaps it wasn't - I'll never know. But either way, today's tears because of pain in his chest brought me immediately back to January. And down into a hole of helplessness and borderline despair I went:

How could I have not known of Ethan's leukemia? That he was as sick as he was? I failed him as a mother! I am helpless to help him. I should have known. I failed.

When Ethan was diagnosed, truly I felt so much like I had failed. How could I have missed what was happening? I am his mother after all! And so today, unexpectedly, after a joyful morning spent with auntie and the cousins - that sense of failure and helplessness came right back, triggered by Ethan's tears and pain. Such sadness and disbelief that this is all really happening.

But then, God. 

Psalm 40 (verses 1-3, v. 11) says:

"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.

...As for you, O LORD, you will not restrain

your mercy from me;

your steadfast love and your faithfulness will

ever preserve me."

You guys, what wonder and strength is found in knowing that it is God's steadfast love and faithfulness that will ever preserve me. That He can take me from the deep holes of this journey and set my feet on the rock. That he hears my cry. It is a marvelous thing, the love of God. 

And of course that doesn't mean that there won't be plenty of more holes I'll step into in the future. It's just what life's journey brings - for all of us, cancer or not. But today, I'm thankful that God reminded me of who He is and of his faithfulness. And that I don't have to pick myself up out of the holes of despair. That I am set securely on a Rock that will never fail. 

Truly, what a Savior.

enjoying summer

We have been taking full advantage of high counts and feeling good - trying to enjoy summer over these last couple weeks as much as we are able.

Walking on bridges.

Running outside in the early morning.

We even went to the ZOO last week. Waving at the trains was by far the highlight!

Playing outside in the backyard on the 4th of July.

And lots of frilly, tulle skirts. The only way we get one off these days is I've got another one ready for her to put on. :)

But of course, even as we've been able to enjoy summer the last couple of weeks, the reality of living life with cancer and chemo is always still there and things can just change quickly. Yesterday Ethan spiked a low-grade fever that was still high enough to warrant a call to his team. And, as we've had to do countless times now, we had to head to the ER to have labs and cultures drawn. Thankfully his counts are great - over 2,400. He tested positive for a cold virus, which likely explains his fever, and so after a dose of a 24 hour antibiotic, we were sent home.

This morning it seems the fever is gone and Ethan has been in great spirits. He is scheduled to have his last treatment of chemo for this phase tomorrow(Monday) morning. After that we get a 2 week break until the next phase, called Delayed Intensification, begins on July 23rd. We've been told many times now to expect Delayed Intensification to be a rough phase - similar to what his first month of chemo (Induction phase) was like. Lots of big-gun chemos that will cause his counts to drop and stay down for a while. Delayed Intensification will last 63 days - likely through the end of September.

So, that's what's on the horizon. We could definitely use prayer not only for this current virus to be healed quickly, but also over the next couple months of chemo that Ethan will have to endure. That his body will continue to be eradicated of any cancer cells and for protection over the short and long-term effects of the chemotherapy.