transfusions

I can tell I'm tired. It's been nice not to have a particular "reason" to blog since we've been enjoying the blessing of being home and staying on schedule with Ethan's treatment. So the increased space between blog updates is partly due to that, but also due to the fact that really, I'm just tired. So when I sit down to blog, it's a lot easier to plunk out the facts and medical updates rather than spend time reflecting on all the other stuff that goes along with this whole cancer thing.

I've been camping out in 1 Peter a lot this week - trying to live in Scripture that talks about suffering and have been finding much comfort in 1 Peter 4:19:

Therefore let those who suffer according to God's will entrust their souls to a faithful Creator while doing good. (ESV)

And remember, I'm tired; so I don't have anything really profound or thoughtful to flesh out here. Only that even amidst this season of suffering for our family there is comfort in knowing that God is faithful. And that I can entrust my weary soul to Him. Hallelujah. 

So this week has been busy. On Monday Ethan had to get a platelet transfusion because his platelets were low. And then today (Wednesday) he had a scheduled outpatient visit to the clinic to have 2 different IV chemos. One of the chemos (that he has had a few times before) has a high risk of an allergic reaction that he has thankfully not had thus far. Today, however, he started to have a mild reaction to the chemo about halfway through the infusion and so they paused the infusion and gave him some benedryl. They resumed the chemo infusion and monitored him closely to see if he would continue to react or have worsening symptoms (aka his nurse had an epipen in her back pocket) but thankfully, he was able to have the rest of his chemo without any more symptoms. 

His hemoglobin was also low today and so he had to receive a blood transfusion as well. As you can imagine - this all made for a fairly long day at the hospital, but thankfully at the end of it all, we got to go home and then enjoy Chili's for dinner - which is apparently Ethan's favorite restaurant, as he shared with us today. :)

Thank you for continuing to pray for Ethan and our family. Please pray that Ethan's blood counts continue to recover and that our house remains infection-free. Pete is the latest one to start a cold here, and so we are praying that the rest of us don't get it, especially Ethan of course. 

We are thankful for all of you, our precious Team Ethan!

easter and the week ahead

What a blessing it has been to still be HOME now for over 4 weeks and counting. We were especially thankful that on Easter Sunday, we got to attend church together as a whole family, for the first time since Ethan's diagnosis. On top of that we got to have church OUTSIDE on a beautiful Spring day. Most importantly, we got to worship Jesus and celebrate his resurrection!

Since Ethan was able to resume his therapy schedule last week, he is now in the midst of some pretty heavy-hitting chemo that can really knock down his counts.

He has had a few symptoms in the last day or so that made me give his team a call and they decided to have some bloodwork drawn early (he was scheduled to have labs tomorrow) to see where his counts were at. The results came in and showed that all of his cell counts have been knocked down into low ranges. His platelets are steady enough right now, but his hemoglobin is low enough that he will need to get a blood transfusion tomorrow afternoon (outpatient) at the hospital.

So, this week he will have IV chemo at home Wednesday through Saturday, oral chemo at home each day and now a blood transfusion tomorrow.

Can you please pray for Ethan - that his body will continue to grow strong and make healthy blood cells? And that he would also stay healthy and infection free? The last time he had this week of chemo in his therapy schedule, we ended up in the hospital with a fever that was due to the chemo itself, as it can cause flu-like symptoms. Please pray that he can get some good rest and also that the transfusion will go well tomorrow - yes, these tranfusions are par for the course, but there is always a risk that his body could have a reaction.

Thank you for continuing to pray for us. Truly, we are so thankful for all of you!

A few Easter weekend outtakes of the fam:

My girl and her accessories! She is 1000% all girl.

Trying out their new special green chairs.

Trying out their new special green chairs with Dad.

Ethan set us up to apparently have LOTS of color choices for our egg dyeing. Alas, we had to consolidate to just 5. Yes, 5.

Hard at work.

My favorite part of this picture is the precious daughter in the back. Who doesn't love a good gulp of dyed water?

Easter cheese!

My girl and her basket.

And probably my favorite Easter morning memory this year - Ethan whipping each egg he found hidden around the house into his basket at full speed. And then dumping them all out on the floor. :)

back on schedule

We received great news on Monday that Ethan's counts were over 1400 - way past the goal of 750 and so we were able to resume his chemotherapy today (Wednesday). It has been a blessing and a little nerve wracking at the same time to have a 3 week break from chemo. On the one hand - it was nice to have a break and get to do normal things without having to worry about his tubie (what we call his port being accessed), or really any medicines to give at all, so no side effects to monitor or help with. On the other hand, as cancer parents, it's hard to not wonder why his counts took a while to recover. The team continues to assure us that this is normal and that his body just needed some time to recover.

This past week, while we were still in the waiting period, we enjoyed lots of time at home and finally got to enjoy spending time outside!

And time inside too. I found them like this the other morning, just hanging out.

And, we were super excited to have our Team Ethan shirts arrive! Ethan wore his for two days straight, day and night. :)

Side note - look at her curls! SO sweet!

A great picture of their relationship lately. They LOVE to play together and have been running around like crazy. But then, this.

Because Ethan's counts improved and he was no longer neutropenic he also got to go back to school yesterday and was so very excited!

So, it's been a blessing to have lots of together time and get back to some normal things. Today, we are back on schedule and his therapy schedule should remain the same for the next month. He has 3 chemos today - one that he takes for 4 days,  and another that he takes for 14 days. The other chemo he takes today has a risk of impacting his bladder and kidneys so our visit to the clinic is longer so that he can get lots of IV fluids to flush the chemo from his system.

Thank you for all your continued prayers!

chemo on hold again

We have been blessed to still be at home - almost 2.5 weeks and counting now without a hospitalization! Ethan had his pre-chemo bloodwork on Monday in hopes of being able to start the round of chemo this week that was put on hold last week. His counts came back showing some improvement but he is still neutropenic and way below the goal of 750 and so his chemo is again put on hold for another week.

So, we will have bloodwork checked again next Monday April 14th and will resume chemo next Wednesday if he makes goals. His team continues to assure me that it is very normal to put chemo on hold like this, and that it can just take more time for his body to recover when he is in the midst of treatment.

Our prayer requests remain the same! Please pray that Ethan's body makes white blood cells to get his counts up and that he (and the rest of us) stays infection free!

I'm not sure which is more precious here - Ethan's closed eyes and Cards cap, or Eloise's sweet "cheese" face. :)

dancing in winter

I feel like I'm a broken record. Truly, over the last 2 months, the places my thoughts take me and the things that I share with friends and family about how I'm doing, have remained largely the same:

This is hard. It's not going away. 

God knew this would happen and He's got this. 

Cancer sucks. I hate it. 

I'm so proud of Ethan; he is so stinkin brave and sweet and such a delight. 

How can this be our life? 

I couldn't do this without Jesus. I couldn't do this without our whole big Team Ethan army.

And on it goes, round and round. The days pass, some light and free, others hard and sad. A lot of things are easier than they were at the beginning, but at the same time, it's all still hard. There are reminders of cancer at almost every turn - from the books I'm reading to the medicine in our cabinet to it's presence in almost every thought and thing we do.

And yet at the same time, there is still joy. And peace. Peace unexplainable in my own heart and joy radiating from my sweet boy's contagious smile. Like tonight, at the end of probably our 300th viewing of Toy Story 3, when Ethan jumped up and shouted "Let's dance Mommy!" And so we had a spontaneous dance party in our living room with Woody and Buzz Lightyear with Ethan giggling, and laughing as we twirled and spun around.

Such a joy-filled moment brought me immediately back to the night before Ethan's diagnosis at the end of January. Our visit to the doctor that morning had only happened after some deliberation over his symptoms - no fever, but pale; lots of energy still but a snotty nose that had lasted two weeks.  I thought that he perhaps had a sinus infection. But then the nurse practitioner recommended that we have his bloodwork checked to get a baseline and see what might be going on. She wasn't overly concerned and yet we had to go get bloodwork. I remember feeling unnerved as we left the office, with a twinge of anxiety staying with me throughout the day.

We got his bloodwork done and then went to dinner as a family that night. And when we left the restaurant there was music playing from the speakers outside. I can't remember the song now, but immediately from my sweet son - "Let's dance Mommy!" And so dance, we did, in the parking lot outside McAlister's Deli.

And while we danced that Friday night in the parking lot on January 24th, in my heart, a quiet, unspoken nagging thought: would this be our last night before our lives changed forever? For whatever reason, it felt like we were on the precipice of something. I wanted to remember the dancing and the freedom and fun of that moment.

And then the next morning, phone calls from the doctor to go to the ER and more blood tests and x-rays, and a diagnosis of leukemia by the evening of January 25th. We had in fact, been on the edge and were abruptly thrust into a new season of life that was defined by cancer and chemo and hospitals and blood counts and so much unknown.

And two months later, this season remains. Even though the calendar has turned to April now, for us it still feels like January. Everything that we were a part of - community group and school boards and volunteering and daily life - was put on hold as our story took a drastic change in direction.

And yet even in this winter season, "Let's Dance, Mommy!" Moments of joy that can still feel light - what grace that is from God that can bring life to my weary heart. God is with us. He is sustaining us. And He still brings joy.

Thank you God for dancing. For joy-filled, twirling, spinning dancing in the midst of a dreary, bleak filled winter season.

chemo on hold

Ethan was scheduled to have his next round of chemo today that included 2 IV drugs and an oral chemo that lasts for 2 weeks. He had pre-chemo bloodwork yesterday with a goal of his blood counts being at 750 in order to start chemo (these particular drugs can really knock down his counts, so it's important he is at a certain count level first).

His results came in yesterday afternoon and we learned that he is severely neutropenic right now with his counts at 80. Yes, 80. Remember that the minimum threshold for neutropenia is 500, so he is way below that number. The nurse assured me that this is very common - that basically what can happen is that the more chemo your body has, the longer it can take for your counts to recover. So, when this happens, they basically put his chemo plan on hold for one week, in order to give his body more time to recover and make white blood cells.

Thankfully his hemoglobin and platelets are both in acceptable ranges right now, so no need for any transfusions at this point. We just have to be very careful to keep up our hand washing and cleaning and do what we can to keep him infection free.


So, our plan right now is to take the next week and lay low. He will have bloodwork again on Monday to check his counts and if he makes the goal of 750, we will resume his chemo plan next Wednesday April 9th.

Please pray:

• For Ethan's body to make those white blood cells and that his counts recover this week.
• For sweet Eloise, who woke up with a cold this morning. She's in fine spirits, but please pray that she heals quickly and that the rest of us don't catch it - especially Ethan. 
• For rest for all of us.
  

P.S. Today is the last day to order Team Ethan t-shirts. We've been abundantly blessed so far with so many ordering shirts - and no pressure to order, of course. You are a part of Team Ethan whether you have a t-shirt or not. :) If you'd like a t-shirt though, make sure you order today April 1st. www.booster.com/teamethan