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.