celebrations this weekend

We are getting SO excited!!! Ethan is nearing the end of this phase of chemo and has one more chemo treatment this Wednesday (09/24) before we get a week off and then get to start Maintenance. Ethan's had a lot of energy and so has been able to go to school and church a little more frequently - it has been just wonderful.

Coinciding with the end of this most intensive time of treatment is Light The Night Walk at Forest Park in St. Louis THIS Saturday September 27th. We have a team of 37 signed up to walk with Ethan and us in celebration of Ethan and solidarity with thousands of others who have been impacted by blood cancers. There is still time to sign up and join us on Saturday. Final details for the event will be sent out this week by our Team Captain Auntie Lindsay. Just click on this link to find our Team Ethan page and then click "Join" at the bottom of the screen to get signed up.
http://pages.lightthenight.org/gat/StLouis14/TeamEthan

We've got a team of 10 walking with Team Ethan's Minnesota at the Light the Night Walk at Target Field THIS Sunday September 28th. If you'd still like to join their team, click here: http://pages.lightthenight.org/mn/TwinCiti14/TeamEthanMinnesota

In summary, you guys, I am super pumped. We've got nearly 50 people in 2 states that are celebrating Ethan and helping to raise awareness and money for blood cancer research. It's simply amazing and I am so thankful for all of you!!!

To cap off our weekend, we've got an Ice Cream Social Fundraiser for Team Ethan THIS SUNDAY September 28th from 11am to 1pm at Tower Grove Creamery. We are on the final leg of fundraising for Team in Training and are really excited for an afternoon of ice cream! Suggested donation is $10/person and all proceeds will go to The Leukemia & Lymphoma Society. Please join us if you can!

a new week

Fall has pushed into St. Louis rather abruptly. I think it was just 90 degree weather like a week ago and the last few days we've been in the 60s. A reminder that even though the days are long, this year has gone by quickly, and here we are already in the middle of September.

We made it through last week's 4 days of IV chemo at home. Ethan's labs on Friday came back showing that his hemoglobin was low and so he had a blood transfusion on Friday afternoon. He started to have a low grade fever by the end of the transfusion and so as a precaution he also had cultures drawn and a 24 hour antibiotic given before we left the clinic, in case his fever continued. Thankfully it subsided by the morning and so we haven't had to make any more trips to the hospital this weekend!

Here's my boy waiting at the clinic before his blood transfusion

We got a chance to see Auntie and Ella and Noah on Friday morning before we headed to the hospital, which was good for ALL of us!

And, since Ethan's been feeling pretty good overall this weekend, we also went to church this morning. The highlight for the kiddos is always getting donuts after the service. :)

This week Ethan has chemo at the clinic on Wednesday morning. He is scheduled to have 2 IV chemo infusions, with one being the higher-risk for an allergic reaction. Please pray for protection over him.

You guys, we have 2 more weeks of chemo for this phase, and then a week or two off before we start Maintenance. I can't believe we've come this far! Thank you Jesus!

ba-bye cancer cells

Last night when I was tucking Ethan into bed we got to talking about today's plan at the hospital - getting the sleepy medicine and chemo and having to keep his "tubie" in when we go home so I can give him his chemo the rest of this week. As a typical 4 year old - he was curious to know if I've had sleepy medicine before. Yes, I told him. And a tubie? Yep, I've had one in my arm, buddy. And mommy, you've had chemo too?

Oh.

You see, we've had the sleepy medicine and tubie conversation lots of times before on our journey here, but Ethan's never asked me if I've had chemo before. So, it caused me to pause -- oh the heartache for my boy who's had to endure so much; at the age of 4 having to battle cancer and endure this chemotherapy.

And yet it was a great question and we had a short conversation about why chemo is important and that not everyone gets cancer but when you do, chemo is a good medicine to help get rid of all the yucky cancer cells. In Ethan's words - chemo says ba-bye cancer cells!

Ba-bye cancer cells indeed. My 4 year old reminding me why this chemo is important. We're in the thick of this rough chemo phase and the days are long, with a lot of ups and downs, and side effects. I ran into another mom at the hospital last week whose child is in the same phase as Ethan and she was like "Is delayed intensification kicking your butt or what?" YES! Holy cow it is! Ethan's team prepared us for this and it's proven to be true. Things aren't quite as intense as the first few months of treatment but pretty close. And it makes sense - the chemo drugs he's receiving this round are heavy-hitting and meant to get rid of any lingering hidden cancer cells. In summary: it's rough.

Today we start another 4 day round of IV chemo. We are heading to the clinic shortly for chemo and for his sedation for intrathecal chemo. We've also got about another week left of his oral chemo that he's been taking at home. Ethan will also be getting labs checked a little more often over the next week, because the chemo he's getting can impact his blood counts and possibly require blood or platelet transfusions.

So, as you've done so faithfully thus far, please pray for our boy. Please pray for his spirit - that his joy would remain. Please pray for comfort from the effects of chemo and all of this. Pray for us as caregivers - for patience and endurance. Pray for Eloise and her sweet spirit.

Thank you for lifting us up, faithful army. We are so grateful for you!

ER and the week ahead

Yesterday morning we had a *short* 5-hour visit to the ER because Ethan spiked a fever when he woke up at 5am. I say short because thankfully, we didn't have to be admitted! He has been fighting cold symptoms since last Wednesday and so it was no surprise that he tested positive for a virus. Last week Ethan's counts were slightly under 500; yesterday at the ER his labs came back showing his counts improved to around 3500. Since he wasn't neutropenic, we were able to go home after getting a dose of a 24 hour coverage antibiotic.

And really, he's had a lot of energy throughout this virus, which is something to really be thankful for. Because he made the pre-chemo goal of 750 for blood counts, we will resume treatment and get started with chemo tomorrow - Day 29 of this phase.

So, what that means is a long day at the hospital tomorrow (Wednesday 9/3). He receives 2 chemo drugs tomorrow, with one requiring both pre and post hydration to protect his kidneys from being damaged. He is also scheduled to have intrathecal chemo tomorrow as well, but since he still has a small lingering cough from his cold, his team will make the final decision tomorrow on whether he will be sedated or not once they get a chance to examine him.

In addition to tomorrow's chemo at the clinic, he will have IV chemo at home on Thursday, Friday and Saturday and also start a 14 day dose of an oral chemo at home. Next week will be a similar regimen. Now that we are able to resume his treatment he will not have to make any "blood count goals" until we start the next phase. There are 4 weeks of chemo ahead and two weeks to recover before we start Maintenance.

As you can see, there is a lot ahead for Ethan in the coming weeks. Please continue to pray for our precious boy - for stamina and strength. For protection against the harsh effects of chemotherapy. For that joy of his to remain. This feels like a bit of a "home stretch" before we get to the next phase and we need your prayers for strength and endurance.

september

September is Pediatric Cancer Awareness month. Last year, like so many - I had no idea that September put the spotlight on kids who are battling such a horrific giant like cancer. And this year, here we are with pediatric cancer now a permanent part of our story.

Since it is now a part of our story, we want to do what we can to support and raise awareness. Pediatric cancer historically only receives 4% of the government funding for cancer research --- only 4%, when it is the #1 cause of death for children under the age of 15 in the U.S. Two thirds of all childhood cancer survivors will suffer from long term late effects from treatment. It's brutal.  (sources: http://www.alexslemonade.org/childhood-cancer-facts; http://www.stbaldricks.org/about-childhood-cancer)

• Join our Team Ethan and walk with us at Light the Night in St. Louis OR Minneapolis!
• St. Louis Walk on Saturday September 27th in Forest Park, with my sister Lindsay as Team Captain:  http://pages.lightthenight.org/gat/StLouis14/TeamEthan

• Minneapolis Walk on Sunday September 28th at Target Field - my cousin Grace is Team Captain: http://pages.lightthenight.org/mn/TwinCiti14/TeamEthanMinnesota

• Make a donation to our Team in Training fundraising page for The Leukemia & Lymphoma Society. Our goal is $5500 and we are about 20% there, with just the month of September left to raise funds. Every single dollar makes a difference you guys. $1, $5, $20 --- and up. Please consider making a donation  - you can do so securely on our Team in Training page here: http://pages.teamintraining.org/gat/rnrstlou14/teamethan

• Most of you know that my husband Pete owns his own business - Big Town Tickets. During the month of September, 10% of all profit made on sales directly from the Big Town Tickets website will be donated to The Leukemia & Lymphoma Society. Nationwide tickets to concerts, sporting events, etc in all major cities are available for purchase - so check out the website and get your tickets with Big Town Tickets! http://www.bigtowntickets.com/