low counts

You know you live in a strange world when you are disappointed that chemo is put on hold. But, that's where we find ourselves this week. Ethan had his pre-chemo labs on Monday and it turns out that he is slightly neutropenic with counts just below 500 - and definitely below the goal he needed to make of 750 to start chemo this week.

So, as we've done before, chemo has been put on hold until next week. He'll have labs on Tuesday and if he makes the 750 goal, he will start chemo on Wednesday 9/3. Once he starts, he won't have to make goal again until the start of the next phase. Which means his counts will likely go down again over the next few weeks with the heavy-hitting chemotherapy he will be receiving.

Please pray that Ethan's body continues to recover and make healthy white blood cells. He also started a slight runny nose today --- please pray for healing if it does happen to be a virus starting. Chemo next week (if he makes goal) includes sedation for intrathecal chemo so it's important that he is as healthy as can be for that.

Oh, and seriously, this is how my sweet babes roll these days, guys. Ethan is determined to help Eloise up and down the stairs and you can't believe how much she beams holding her big brother's hand!

oh how he loves us

As I expected, this has been a tough week. It was the 3rd round of chemo for this cycle and the side effects hit Ethan pretty hard. We met with several new specialists to talk about different side effects from chemo that we've noticed. All in all, just a week where the heaviness of cancer and chemo are present and staring us in the face.

Last night I was tucking Ethan into bed, and we ended as we usually do by singing Amazing Grace. And as we sang I was struck by that simple phrase - Amazing Grace. Because gosh, has that phrase been the bedrock of this whole thing. The hard days, the easy days, the happy, the sad. God's grace has been sustaining Ethan and all of us moment by moment, from one day to the next. And that includes these weeks that are harder than others.

One of my biggest prayers from the very start of this whole journey was that Ethan's joy and exuberant, delightful spirit would remain intact. And, by God's grace, it has - with today as a prime example. After a fairly rough week, Ethan woke up feeling better and well enough that we felt comfortable sending him to orientation at school this morning. He was so excited!

And that joyful exuberance? On the way home from school one of our favorite David Crowder songs came on the radio and from the back, there was my precious son belting it out. My precious son who God is carrying through this trial and giving him the joy to still SING!

Thank you God for your grace. For your faithfulness. For joy, even in the depths.

pressing on

One day a time, one treatment at a time. Sometimes one moment at a time. It's how this chemo thing goes, and how we've been taking the last couple of weeks of this new phase. Despite the ups and downs and side effects, Ethan really has kept his joyful spirit --- something I'm so thankful for. And he sure looks handsome in his button down. :) Sure do love my boy.

Last week on chemo day we also had labs done and learned that Ethan's in a good range so far, with his ANC being over 3000. So, as Ethan's felt up to it, we've gone out and about here and there. Last night we took Great Grandma Dolores out for dinner, which was a real treat.

And in case you were wondering, Eloise is most definitely still in pink, people. This pink phase is no joke. How I love this girl!

This week we've got a few things on our schedule. We've got chemo and labs on Wednesday (Aug 13th - Day 15 of this phase) and we also are going to have consults with Physical Therapy and Occupational Therapy for some side effects that we've started to notice. Once we get through this week's chemo, Ethan will have a week off from chemo, and is scheduled for his next chemo on Wed August 27th.

With all that said, I've got a few prayer requests:

• We've been beyond blessed to have my mom/Grandma Sheila back to help us carry the load here, and couldn't be more thankful for all that she is doing to help. Please pray for strength, stamina, and patience for all of us as we take each day as it comes. 
• Please continue to pray for protection for Ethan from the effects of chemo. 
• Please pray for discernment for our PT and OT appointments - for the team and for us as we figure out if we need to schedule regular physical and or occupational therapy going forward. 
• Please also pray for discernment as parents regarding school. Ethan's preschool is scheduled to begin on August 18th and we are able to send him if his counts are okay and he's feeling good - but of course it's scary to send him too, since I can't be there to make sure he's okay! Please pray for discernment for us to make decisions about when to send Ethan, and for Ethan's transition back to the school environment. It will likely be sporadic for the next month or two and then hopefully transition to a more regular thing once we get to Maintenance in October. 

Thanks for praying, guys. 

fundraising for LLS and team ethan t-shirts!

When Ethan was first diagnosed with leukemia in January a friend recommended the book The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. It's a book about the history of cancer and the evolution of treatment and survival over the years - written in narrative story form that makes it easy to understand and grasp.

Only a few pages in to the book and I was confronted with this:

"Leukemia is cancer of the white blood cells - cancer in one of its most explosive, violent incarnations...(It) represents a special incarnation of cancer. Its pace, its acuity, its breathtaking, inexorable arc of growth forces rapid, often drastic decisions; it is terrifying to experience, terrifying to observe, and terrifying to treat. The body invaded by leukemia is pushed to its brittle physiological limit --- every system, heart, lung, blood, working at the knife-edge of its performance." (p. 3)

Take another moment and read that description of the cancer that our son was diagnosed with at the tender age of 3.

It takes your breath away right?

We lived that description in the midst of this past winter: one day we were at the pediatrician getting a a snotty nose checked and the next day we were summoned to the ER and quickly admitted to the hospital to begin a life filled with chemotherapy, blood counts, transfusions, sedations, radiation, and everything else that cancer brings. There was no transition; it was immediate treatment and a complete change in pretty much every aspect of our lives. 

And though it can be easy to feel like we are alone in this, we are not. There are countless other babies, kids, and adults diagnosed with blood cancers all throughout our city and the world. And the more I've learned about leukemia and chemotherapy, the more thankful I have become for the work that has come before us - the research, and funding, and advances in treatments.

Which leads me to my point, really, my question. As I've mentioned previously,  there are a couple of opportunities coming up this Fall that Pete and I are excited about supporting and being a part of -  #1: Light the Night Walk on September 27th and #2: fundraising for LLS through Team in Training.

Today's post is focused on our fundraising with Team in Training. We have a team assembled that includes myself, Pete and a few of our friends - all training for the Rock N Roll Half Marathon in St. Louis on October 19th. And although we are excited about the half marathon, we are even more excited about the opportunity to help raise money for The Leukemia & Lymphoma Society to help other people and families who are currently in this same fight or will be in the future

So, the question: Will you consider making a donation to our team and help us to reach our goal?

You can visit our Team Ethan fundraising website and make a secure credit card donation to our team right on our Team in Training - Team Ethan page, or you can also send a check made out to The Leukemia & Lymphoma Society, and mail it to our address. (If you need our address, send me a message on FB).

Team in Training Website: http://pages.teamintraining.org/gat/rnrstlou14/teamethan

As part of our fundraising efforts we are also re-launching our Team Ethan t-shirt campaign. We've had quite a few people ask us about t-shirts who weren't able to order the first time and so if you didn't get a chance to order a t-shirt and want one - please order one! The t-shirt campaign will be open until August 20th, and then t-shirts will be shipped out within a week or two after that. All funds raised will go toward our fundraising goal for LLS.

To order a t-shirt, click here: https://www.booster.com/teamethanweseloh


If you have any questions, don't hesitate to ask! Thank you so much for your support!