radiation COMPLETE!

You guys!!! What a happy day today! It was Ethan's very last radiation treatment - 8 of 8 now completed and in the books. We have had such great care these last two weeks from all of the nurses, doctors, and anaesthesiologists. Today we were especially blessed to have our favorite anaesthesiologist that took care of Ethan during his very sedation at the beginning of his treatment (the one that was seriously scary due to all the risks related to the mass on his chest). What a blessing to see her again on another big milestone day.

We have also been enormously blessed by an organization called Friends of Kids with Cancer, that has been gifting Ethan each day of his radiation treatment with some awesome gifts (doctor kits, movies, books, toys) that have been a huge help and blessing to him each day he's had to get his sleepy medicine. Check out their website - they do awesome things for kids with cancer here in St. Louis and have been an incredible blessing to us already throughout this journey.

http://www.friendsofkids.com

So today was huge - radiation is DONE!!! And in celebration, he got to ring the bell! - with all of his nurses, the anaesthesiologist, and the rest of us and the waiting room cheering him on. It was a great, great moment. Our boy is so brave. And such a delight. Hooray for Ethan!

We piled in the car and headed home, where Eloise and Daddy (and Betsy) were anxiously awaiting our return and we had another round of hugs and high fives for our brave Ethan!

Thank you for praying for us during these treatments - it is such a joy to be able to celebrate a big milestone like this. We are hoping for a low key weekend to enjoy at home and are scheduled to go back to clinic on Tuesday for two IV chemos and to start a round of oral chemo as well. We learned at our appt this past Wednesday that Ethan's counts are down below 500, and so he is neutropenic right now. He needs to be at 750 in order to be able to start this next round of chemo on Tuesday. Can you please pray that his body would keep making white blood cells to get his counts up? And also that he would stay healthy (along with the rest of us). Especially since he is neutropenic, he is at greater risk for infection since his body doesn't have what he needs to fight off bugs.

We hope you celebrate with us today. Thank you Jesus! Hooray for Ethan!

halfway through radiation

We've been home since Friday afternoon - and have been staying very busy, even though we've pretty much just stayed home the entire weekend! I almost forgot to snap our discharge day photo but Ethan and I got a quick picture in the parking garage before we headed home on Friday.

We enjoyed a whirlwind visit on Saturday night from some of our favorite family on their way back to Minnesota from Florida - Uncle Rob, Auntie Gail, and Cousins Jack, Josh and Grace. It was such a whirlwind that I have no pictures to prove they were here. Regardless, it was such a blessing to see them and Ethan and Eloise were pretty much jumping and running around the entire time, they were so excited.

It seems like every time we come home from the hospital I get hit with a burst to "nest" and get things organized and cleaned around the house. So, that's how much of the weekend was spent, along with lots of organizing of cabinets and loads of laundry and even putting up some pictures on our attic floor that have been waiting to be hung for months now.

And of course getting to snuggle with my sweet Eloise. We sure do miss each other when we are apart.

The final result of last week's hospital stay was basically that the original cultures that grew from our ER visit, grew a bacteria that that may have been a contaminant (i.e. not really an infection in Ethan's line) but in case it wasn't, they wanted to continue a full dose of IV antibiotics. Because Ethan is immunosuppressed, it is too risky to take a chance as any kind of blood infection could be very serious, very quickly.

So, we were sent home on some IV antibiotics that I have to administer in Ethan's line twice a day for 14 days. He continues to be such a trooper and we've done the first few rounds really without any trouble.

We already had Ethan's radiation treatment this morning, and this marks the halfway point of his radiation treatment - 4 down, 4 to go. As I've shared before, and as you can imagine, this is a bit trying for Ethan to have to be sedated every day, but thankfully today things went fairly smoothly. We've been reading a couple of books that Ethan enjoys about the hospital and about a boy with leukemia, in hopes that it helps to normalize all that he has to do and help things not to feel so scary. Today he also had a brand new yellow motorized car waiting for him in the treatment room, which really helped to keep his attention focused elsewhere. There is an organization called Friends with Cancer that helps to provide kids with toys and event tickets as a way to help them cope with all of this stuff - and our yellow car was from them and a very big hit!

This week we have radiation every day at 7am through Friday and chemo at the clinic on Wednesday. We are excited to have Grandma Bonnie back from Minnesota today and are hoping we can stay put at home for a while.

Thanks for all of your prayers!

sunshine

Today was pretty low key with not much on the agenda, other than our early bird radiation at 7am.

We got to enjoy the sunshine on the roof top garden.

We got to play in the play room and wander around and take different elevators. Watch shows and snuggle.

We got to see this beauty after being apart for a couple days.

And enjoy more sunshine.

And see our friend Kelly who got to enjoy some snuggle time too. 

So, a good day and I'm thankful for it. We are hopeful that after tomorrow's early bird radiation we can go home at some point. They started another antibiotic today in addition to the one he is already on, as they must have determined more specifically what kind of bacteria he has and what antibiotic will work best to treat it.

We've got 2 radiation treatments down, 6 to go. Please pray for Ethan for protection against the side effects but also for peace and calm during the whole sedation process. It is a huge deal to have to get the "sleepy medicine" that he absolutely does not like at all, 9 times in 2 weeks. We are a third of the way done but it's a process for everyone - Ethan, me, his doctors and nurses - to figure out what helps him the most during the process - and so please pray that we get it figured as best we can to help make the process as smooth and calm for him as possible.

Thank you Jesus for the sunshine. It sure is good for the soul.

long day

Our day started bright and early this morning at about 4am when Ethan (and subsequently me) did not go back to sleep after some routine vital check ups in the wee hours of the morning. We tried for about 2 hours but I tossed in the towel at 6am and finally let him watch some cartoons (which he was pretty excited about since he thought he was getting to have a special privilege, watching a show "in the night.")

As you can imagine this made for a long day since we were both overtired. Ethan's first radiation treatment was bright and early at 7:30 at a different building at the hospital complex and so Ethan was thrilled with all of the walkways and bridges and new elevators to try. He was also very adamant about taking his suitcase with him and rolled it the whole way all by himself.

(Don't mind his cool mask, he just has to wear it when we are wandering about when he is neutropenic).

His radiation and intrathecal chemo went fine and we were back in our hospital room by 10am. Thankfully --- seriously, THANKFULLY --- Ethan took a nap after about a 45 minute wind down. I think this counts as his first official nap ever that he has taken at the hospital since his diagnosis. It was so, so good for him to get some rest!

The team decided that even though he had grown some bacteria in his cultures from last Friday, they were still going to go ahead with all of his chemo treatments today, since he is not showing any other symptoms. This afternoon he had 2 IV chemos - one of which has a serious potential to have an allergic reaction and so they monitor his vitals every 15 minutes for 2 hours during and after the infusion. Thankfully, everything went great and we celebrated the end of a long day with some time in the playroom and "Donald's House" (aka The Ronald McDonald Room). 

The plan right now is to continue taking blood cultures each day to see if anything grows and then hopefully we can be discharged on Friday morning after his radiation treatment. If his cultures do come back positive again, he would continue on IV antibiotics, but would likely be able to finish a course of those at home and not in the hospital. His counts have climbed a bit from Monday's 300ish to just a bit over 500 which puts him at borderline neutropenic, but at least he's improved. 

It was a long day for him and he fell asleep rather quickly after we had a pretty precious time singing together some of his favorite songs - ending with My God is So Big at his request. This boy and his joy --- it is such a delight to see and I am so thankful that even on tougher days, his spirit still remains so sweet.

admitted

We really have no idea what each day will bring, how it will start, or how it will end. Today was a perfect example.

Because today, my boy was FULL of energy. Both he and Eloise were running around the house most of the day, full of laughter and so much energy! The blood transfusion that he received yesterday did wonders for his energy level and it was a delight to see. So, when the nurse called me at 5:00pm tonight to let me know that we needed to be admitted to the hospital tonight, it was slightly surprising.

Any time we go to the hospital for a fever, it is routine to take blood cultures to see if any bacteria grows over 24-48-and 72 hours. When we went to the ER on Friday night because of a fever, they took cultures and today they came back positive for some kind of bacteria. They are not quite certain what type of bacteria yet, but because he is neutropenic with bacteria in his blood, we had to be admitted to start IV antibiotics.

So, we're here at the hospital now. My exuberant boy was pretty thrilled about getting a chance to sleep in his "special bed" and is now fast asleep. He was due to have a final dose of a round of oral chemo tonight, but his docs decided to hold off since there is the possibility of infection, and wait until his team makes a decision about treatment tomorrow.

He is still scheduled to have his first round of radiation tomorrow morning, bright and early at 7:30am. He was also scheduled for intrathecal chemo and 2 other IV chemos tomorrow, but we will have to see what his team decides to do once they meet tomorrow. I will keep you posted.

And for those of you who contributed to what is a humbling and exciting first day of our Team Ethan t-shirt campaign - thank you so much! I am genuinely excited at the idea of so many people around the country wearing Team Ethan t-shirts - it really is a way of showing how much of a team we have around us. Thank you so very much.

We will keep you posted on tomorrow's events. For now, please pray that whatever this bacteria is - that it will be killed quickly by the antibiotics and that his first radiation treatment and sedation goes smoothly in the morning.

team ethan t-shirts & fundraiser

We are excited to share our Team Ethan T-Shirts that our friend Russ Mohr from The Journey helped to design for us. Ethan was pretty adamant on having a red t-shirt and so red it is! You can click on the link below to order a t-shirt and help to support Ethan and our family.

https://www.booster.com/teamethan

The campaign to order t-shirts will be be open until April 1st. You can order directly online and have the T-shirts shipped to your house. All sizes available.

Did I mention we are excited about these t-shirts? Seriously, they look great! Hooray for Team Ethan!!!

https://www.booster.com/teamethan

marathon

I went to church yesterday for the first time since this whole thing started. By myself, since we are grandma-less right now and so Pete stayed home with the kids. It wasn't until the end of the service when we started to sing one of my most favorite, solid hymns, that I found myself on the edge of a good-old blubber cry.

My hope is built on nothing less

Than Jesus blood and righteousness
I dare not trust the sweetest frame
But wholly trust in Jesus name

Christ alone; cornerstone
Weak made strong; in the Saviour's love
Through the storm, He is Lord
Lord of all

When Darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
My anchor holds within the veil

Christ alone; cornerstone
Weak made strong; in the Saviour's love
Through the storm, He is Lord
Lord of all

 
When He shall come with trumpet sound,
Oh, may I then in Him be found;
Dressed in His righteousness alone,
Faultless stand before the throne.

(You can click here to take a listen if you'd like - http://www.youtube.com/watch?v=PZ3HIHG7Yvw)

Some dear friends shared with us the analogy of this cancer journey as a marathon - such a spot on, way of describing this experience. And it's a marathon that started as a sprint - filled with cancer jargon, countless nights in the hospital, the scariest day of our lives with Ethan's first sedation, and then his body being infused with all sort of toxic chemo, and blood transfusions and hardly getting to see Eloise, and figuring out what the heck to do with our life.

The dust is starting to settle a little bit, but we are still in the race. And still at the beginning, really. There is a long road ahead and the last few days I have especially started to feel weary. The adrenaline from that first sprint is waning now and I feel how tired I am. And so sad, watching my sweet son struggle with some of the effects of the chemo and everything else. Feeling angry because cancer seriously sucks.

Which brings me back to church yesterday and my near-blubber cry. Because as that beautiful, stormy song played, Jesus met me with the truth of who He is:

He is LORD. LORD OF ALL.  

He is Lord over this cancer and Lord over Ethan's blood. My hope is built on nothing less, than Jesus' blood and righteousness. Without Jesus, I would sink. All I can do is rest on his unchanging grace. Even in this marathon of a new journey, I can find rest in Him. He is Lord. Lord of all.

So that's what you need to know, dear friends. With something as unexpected as cancer has been in our lives, and as unexpected as our days have now become - we are only able to do any of this because Jesus is sustaining us, and he gives us what we need to make it through one day at a time. Christ alone; Cornerstone. Weak made strong, in the Savior's love. Through the storm, He is Lord, Lord of all.

There is much that we could use prayer for as we start this new week:

• Today's sedation to prepare for Ethan's radiation therapy this week went well but his blood work came back showing that he is neutropenic. His hemoglobin was very low and so we spent the afternoon at the hospital getting a blood transfusion. Please pray that his counts recover as he has some big-gun chemo on Wednesday this week and needs all of the healthy cells he can get. 
• Please pray for protection over the 8 sedations coming up over the next 2 weeks and for calm and ease for all of us with all that each sedation involves. 
• Please pray for strength and stamina for all of us too - for Ethan most of all.

Thank you all so much for your continued prayers and for helping to run this race with us. 

cranial radiation

This has been such a big week, on many fronts. We celebrated Ethan's return to preschool on Monday and Tuesday and then had a very long day on Wednesday at the hospital. Ethan's sedation for chemo into his spine went well with no complications and our visit to the clinic for his IV chemo went fairly quickly. Despite the growing sense of "normal" with procedures and treatment, some days are just harder than others, and Wednesday was one of those days.

Wednesday afternoon we met with Ethan's radiation oncologist to discuss the radiation therapy that is scheduled as part of his treatment. This has been one of the biggest concerns for me as his mother, knowing that there are many long term effects that can result from radiation therapy - and so I was thankful to have a thorough explanation of why he needed treatment and what was involved.

One of the biggest reasons why I have questioned the need for radiation in Ethan's treatment is because he did not have any leukemia cells in his CNS fluid when he was first diagnosed. CNS fluid is often a place where leukemia likes to "hide out" and so it was a huge blessing to learn that he did not have any leukemia there. The radiation therapy that he will receive is cranial in order to attack the CNS fluid that covers his brain - and so I wanted to know why he needed to have radiation to his brain if there wasn't any leukemia there in the first place. Perhaps you can understand my concern!

The answer is basically that the radiation therapy is prophylactic - meaning it is done in order to prevent any future relapse of his leukemia in his CNS fluid. Even though it wasn't there to begin with, in a relapse, the leukemia could still grow in his CNS fluid. Ethan's leukemia is also classified as having an intermediate risk of relapse, based on the fact that his leukemia took longer to clear from his blood during the induction phase of his treatment. Because of this elevated risk level of relapse, his treatment is more aggressive and does include cranial radiation in order to prevent a future relapse.

We talked through the risks and effects. He could have problems with memory and comprehension in math and reading, issues with his pituitary gland in areas of growth and thyroid, etc., and the possibility of brain tumors years later (either benign or malignant) from the radiation treatment. There is also the potential for developing cataracts in his eyes.

In summary, this sucks! But we also can't avoid the radiation therapy because everyone involved is expressing it's importance, in addition to chemotherapy,  in helping to cure Ethan's leukemia and preventing a future relapse. We all - doctors, parents, family, friends - have the same goal of wanting Ethan's cancer to be cured and gone forever. And so this is another step in the journey toward that goal.

So, it's hard to say we felt better after our meeting with the radiation oncologist, but it was a very helpful time to gain more insight into why and what is involved. The first step in getting his radiation therapy started begins on Monday morning, where he will be sedated in order to have a mask made that will help to hold his head in place during his treatments. His radiation will take place in 8 consecutive day treatments starting next Wednesday March 19th. He will have treatments each morning Wednesday through Friday next week and then Monday through Friday the following week, and will be sedated for each treatment. This is in addition to his already scheduled chemotherapy and clinic appointments.

How you can pray for Ethan (and us) right now:

• Please pray that Ethan's cancer would continue to remain in remission. 
• Please pray for protection for each of the 9 scheduled sedations over the next 2 weeks. 
• Please pray that Ethan's brain will be protected from the possible negative effects of radiation therapy - for his memory and comprehension and pituitary gland functions to remain intact, and for protection against any future cancers due to the radiation and chemotherapy treatments. 
• Please pray for comfort and calmness for Ethan in his treatments - that he would know that he is safe and for God to take away any fear or anxiety. 
• Please pray for discernment in hiring a part time nanny and developing a solid caregiver plan for Eloise for the expected and unexpected ahead. 
• Please pray for protection over Pete and I's marriage. This is tough stuff and can make for tense times individually and together as we try to navigate and make decisions on everything that is required. Please pray that God would keep our hearts knitted together.

We are continually thankful for your prayers and encouragement. Thank you for continuing to lift up our boy and our family - we are beyond grateful.

back to school

We have been in the midst of a low key, yet high energy week at home. It's been a short time of getting a chance to catch our breath, not knowing if we are just up for a quick gulp of air before being plunged under again, or if we get to tread above the waves for a while.

This round of treatment has so far not been as hard on Ethan and his energy this week was almost back to his very exuberant level - a huge, huge blessing! He was doing so well that we decided it was time for him to go back to preschool. And oh what a joy it was to see him back in his classroom!

We have received nothing but overwhelming support from Ethan's school - City Garden Montessori - and prior to his return, his school sent a great email to parents in our class that shared some great resources on explaining cancer to young kids. I thought I'd pass along a few websites that had some great information to share:

http://www.someoneiloveissick.com/talking-to-your-children-about-cancer/explaining-cancer-to-kids/

http://www.lucydanielscenter.org/page/explaining-cancer-to-children

Life is a little bit more normal right now in a lot of ways (going to school! enjoying the spring weather!) and really not normal in others (i.e. me learning how to administer IV chemo into Ethan's port). We have been doing a lot of talking and planning to figure out how to organize our life, care for Eloise, take care of everything that has to do with Ethan and his care, etc. It's a bit of a juggling act trying to plan the things we know - knowing that there are going to be plenty of things that come up that we can't plan for.

Only God knows what's ahead. For now, we are doing our best to get some plans in place for the things that we do know and that are scheduled.  Please pray for us as we navigate these waters, that God would help us to have discernment to make decisions and plans about, well, a lot of big life things - a part time nanny for Eloise, how to keep our house clean, which grandma is coming to stay when and for how long, what it looks like for Pete to go back to work, you get the idea.

Please also pray for Ethan tomorrow, as he has several appointments during his outpatient clinic day at Children's. He will have IV chemo at 9:00 am and then will be sedated to have intrathecal chemo into his spine at around 10:00. In the afternoon we have an appointment with radiation oncology to discuss the cranial radiation that is a part of his treatment plan in the next few weeks. So, a big day ahead.

I'll close with this most precious picture of my two favorite little ones, embracing, giggling and enjoying some amazing spring weather. :) Thank you Jesus, for sweet moments like this.

in and out

You know you're a cancer mom when you watch the home health nurse administer chemo into your son's newly "installed" port, and think "I could do that." It's funny how quickly the new normal becomes kind of normal. A month ago I was very nervous when his nurses were teaching me how to flush his PICC line with heparin (a medicine that helps his line to stay clear and blood-clot free) before we were discharged. Today, watching the home health nurse give Ethan chemo, I felt confident I could do it on my own.

That's pretty much how this quick hospital stay felt too. We knew what to expect when we went to the hospital yesterday and what worked best to keep Ethan distracted from eating and drinking before his surgery. We knew what to expect with the sedation process, the waiting room, the recovery, and being admitted. It feels night and day from the first weekend we were admitted back in January, when we were thrust so quickly into the unknown world of pediatric cancer. There is a growing comfort level with this cancer and all that it entails, and for that I'm very thankful.

Before we went to the hospital yesterday we took a quick stop at Target so that Ethan could pick out a special suitcase for the hospital.

His surgery yesterday went great and his port was implanted and intrathecal chemo was given into his spine. He also had 3 other new chemos that he hasn't had before that are a part of this next phase of Consolidation. This morning he was discharged fairly early and now we are back at home and happy to once again, be sleeping in our own beds!

 Once discharged, it didn't take long for us to get outta there! :)

remission! and surgery tomorrow

We are thrilled to share that Ethan's leukemia is officially in remission! We met with his doctor yesterday to discuss the results of last week's bone marrow biopsy and learned that not only did they see 0 blasts under the microscope, but also that his Minimal Residual Disease (MRD) - cancer not seen by the human eye) - was also 0! The goal of induction was to have these results and so we are so, so, SO thankful that the chemo did what it was supposed to do.

We also learned that Ethan is officially classified as having Intermediate risk T-Cell ALL. Though he did achieve remission by the end of induction, his cancer took a little longer to clear (some ALL clears by Day 8 for some kids) and so he is considered to be a Slow Early Responder. This is fairly typical for T-Cell ALL - in fact, about 60% of patients are in the Intermediate Risk category.

We also got the next road map for Ethan's treatment for the next phase which is called "consolidation," and lasts for the next 57 days. During this phase the goal is to get rid of any hidden cancer that might be in Ethan's system and so they attack with a different set of chemo drugs. Because we are enrolled in the clinical trial we were randomized to determine the treatment path that we would take. The trial that we are on has 4 treatment arms - one that includes the typical standard of care right now, and then 3 arms that have slight differences in the type of chemo given. We were randomized by the computer and ended up on the standard care arm. What this means is that Ethan will receive the typical protocol that is given for T-Cell ALL patients right now. This includes intense chemotherapy and some cranial radiation.

Ethan has a big day tomorrow as it is the first day of his Consolidation phase. He is having surgery at 10:30 to have his permanent port put in his chest which will be a central line for chemo to be given throughout the rest of his treatment. He will also be receiving 4 different chemos tomorrow. Because it's such a busy day we will be admitted and stay overnight in the hospital.

Thank you so much for all of your faithful prayers for Ethan. We are so incredibly thankful that he is currently in remission and pray that the treatment continues to keep his leukemia in remission. Please pray that tomorrow's surgery and chemo goes well. We will keep you posted as the day goes along!