surreal

Cancer is weird. I mean it absolutely, seriously sucks. But it's also really weird. As the dust is starting to sort of settle on a new life that is dictated by this cancer, I feel myself being bounced between two realities: the surreal one, where it is hard to believe Ethan really has cancer, and the painful reality that in fact, he really does.

Yesterday morning, for instance, for even a few minutes it almost seemed impossible to be true. Ethan was running around with Eloise, laughing, giggling and free from his "tubies" (his pic line and IV) for the first time in a month. He moved on from sister time to start "painting" our house pink (a great color choice) with a dustpan (pretend of course, but he was pretty thorough on the walls of 2 floors!). I was bustling around trying to get laundry in and out, and it was almost like the last month hadn't happened. We were just hanging out having a normal morning.

But then the reality of cancer when we sat down for lunch and he was so tired he held his head in his hand while he picked at his food. And the fact that we were just in the ICU on Monday because they thought he might be experiencing sepsis. And the fact that he just had chemo put into his spine. His spine. Again.

This past summer and fall I started following the blog of a family I've never met whose daughter was battling a rare brain cancer. It was one of those strange experiences where I really felt my heart just ache for people I've never met. As I followed their story I felt compelled to pray for them often. And every time I would read a new blog post I would think - there is no way I could do that. Absolutely no way. Quietly, yet desperately praying in my heart that God would never have something like that be part of my story or my kids' stories.

Fast forward a few months and now here I am: the mother who is writing the blog post about my child who has cancer. Surreal really doesn't even begin to capture how jarring this has been. I never would have thought that this would be a part of our story and then BAM - here we are, clinging to the truth of who God is, more dependent on Him than ever before. Taking each day as it comes, not even having the capacity to think about the things ahead, because all we can do is focus on the here and now.  Life has dramatically changed.

People have asked me if this has really ramped up my prayer life. A question that's hard to answer because it actually feels a lot more like talking. I haven't had the capacity for deep, long prayers - thankfully Pete's heart has been moved to pray that way. For me, it's been a lot of Please Lord. Help me. I know you're here. You are faithful. Help me. Please. Lots of short cries to my Father, lots of the Holy Spirit bringing to my mind the truth of who God is, helping me to rest in his sovereignty, goodness, and faithfulness even amidst the surreal new journey we are on.

Thank you for upholding us in prayer. For all the gifts and meals and emails and cards and words and prayers and everything. We are being held up and supported by all of you, and we could not be more grateful.  

home again!

Ethan was doing great again today and so we were discharged and are back home, so happy to be sleeping in our own beds, under the same roof.

We also received some very encouraging preliminary bone marrow results today as well. We will have final results on Friday and a meeting with his doctor on Monday to discuss the next phase of treatment so will wait to share once we have confirmed reports - but right now, we are very thankful! Thank you so much for keeping our precious boy in your prayers!

much quieter day

Today was a much, much quieter and more relaxed day. Ethan's fever was gone and so he was in much better spirits. It was a 360 degree turnaround from yesterday, which was a huge praise! Being the new cancer mom that I am, I have asked many of the nurses and doctors we've seen today to summarize what happened yesterday and why things went downhill so quickly. The short answer is that we will never really know for sure but it seems like most of the talk is that he likely was experiencing septic shock from an infection and that's why the team acted quickly in getting him to the ICU so that he could be closely monitored. He also tested positive for a cold virus and so perhaps that caused some of what happened too but it's likely an infection was also occurring in his blood. If you know (or google) anything about sepsis or septic shock, it is incredibly serious, so we are so very thankful that God protected him from severe damage and that he is on the mend.

His turnaround happened so quickly that we were actually able to take a midnight ride up the elevator to our regular HemOnc floor. Ethan was a trooper as usual; my favorite line on our trip upstairs was when he asked the nurse to "please hit number 9 for me" (when we got in the elevator) "because I can't reach it" (he was being rolled up in his bed).

He was also doing so well that his team felt comfortable having him still be sedated for his Day 29 bone marrow biopsy and interthecal (spinal) chemo. He didn't get his port today but he's not due for any other kind of chemo until next week and so he doesn't need a central line until then. His sedation and procedures went well and we enjoyed a fairly lazy day in our room watching movies and hanging out.

We are hoping to be discharged tomorrow possibly, but will have to see in the morning what his doctors decide. We are still waiting on final culture results on some of the tests from yesterday's blood work, but other than that his blood counts all look good and he is not neutropenic.

A few specific prayer requests:
-Health for our family. My mom is the latest to start feeling a little under the weather. Please pray that she heals quickly and for the rest of us to STAY HEALTHY!
-Results. Since we were able to get his bone marrow biopsy done today we should get results sometime this week. It will be a lot of information to digest, as I've shared before. Please pray for clear minds to understand the next steps and for boldness to ask good questions.

Thank you so much for praying for Ethan and for all of us!

ICU

Oh my. What a day it's been. Ethan woke up very early overnight complaining of tummy pains - which has been common throughout his treatment due to side effects from his meds but it seemed a lot more intense than normal. What started as tummy pains led to vomiting and eventually a 101 fever, which brought us to the outpatient clinic at around 10am, where things kept getting worse. We had been told before that fevers were never anything to mess around with during this process and today we saw firsthand how quickly his situation could deteriorate.

Basically what happened is that his temp was high and so 2 antibiotics were started. There is no way to know initially if he has a virus or bacterial infection and because his body's immune system is low, they always treat any fever as a bacterial infection; thus the antibiotics were started. Despite the antibiotics and fluids being given, his heart rate continued to stay at a very high range and wouldn't come down. Because of this we were sent to the ICU so that he could be more closely monitored.

Once we got to the ICU things slowly started to settle down, thankfully. He has had tons of labs drawn and cultures sent off to see if anything points to infection. He tested positive for a common cold virus/enterovirus that could explain his vomiting earlier but they were also concerned that his PICC line could be infected. Since he does not need his PICC line for any chemo this week the decision was made to take out his line, hoping that if it is any source of infection that will help to clear things up as well.

The plan as we know right now: Tonight we stay in the ICU and hopefully we can move to our regular HemOnc floor tomorrow, assuming that he stays stable. All of tomorrow's Day 29 procedures have been postponed and will likely take place sometime this week once he shows good recovery from all of this. He has improved greatly throughout the day and is sleeping peacefully now.

Please, please keep Ethan in your prayers tonight. It has been a very long, trying day and he is exhausted. Pray that he gets good rest, that his vitals continue to stabilize and that this virus/infection/whatever is going on is healed. Today was a big reminder of how quickly things can turn. Thank you for your diligence in covering us with prayer. We will keep you posted as we know more.

big week ahead

We have been enjoying over a week now of being HOME! For real, it has been great.

Most of our time has been very low key. Ethan's home nurse came on Thursday to check vitals and draw blood and his counts came back lower than Tuesday's numbers (which is normal since he had chemo on Tuesday) but still way above neutropenic levels. A big praise!

Ethan has really been enjoying spending time in his room, watching movies on the laptop and getting snacks on a tray (who wouldn't?) on his new full-size bed (that makes it much easier for mom and dad to snuggle without falling to the floor). So this has been the scene a lot.

The last couple days we have been enjoying time getting some fresh air at the Botanical Gardens.

Oh, and the boys got hair cuts. And are looking pretty cute. :)

The week ahead is a big one. There are many specific ways that you can pray:

Day 29 / Tuesday (2/25): As we've shared, this is the last day of induction and a big day filled with procedures (surgery for his port, chemo in his spine, and a bone marrow biopsy). Please pray that all of these procedures and his sedation would go smoothly and that God would protect Ethan throughout the entire process.

Healing from colds. We are all pretty much in the midst of some cold symptoms, Ethan included. Please pray that God would bring healing to all of us. Any kind of congestion always increases the risk level for sedation and so I am praying that Ethan's symptoms would heal quickly.

Results and next steps. This is a big one that has been on my heart and mind lately. When we first began Ethan's treatment, we decided to be a part of a couple of studies, also called clinical trials. Clinical trials are conducted by organizations like the Children's Oncology Group as a way to determine the best treatment protocol for different types of cancer. Here's what that means for us: Right now there is a standard protocol of treatment for T-Cell ALL but there is research being done to determine if the treatment protocol should be changed to better prevent relapse in the future.

If you decide to join the clinical trial that we did, you start off in induction and the treatment protocol is the same for all kids who have T-Cell ALL. At the end of Induction (Tuesday for us), his bone marrow is studied under the microscope and sent off for special testing to determine if his leukemia is in remission or if there are any blasts or minimal residual disease (cancer not seen by the human eye) left. These results are put together with earlier results from previous bone marrow biopsies and his initial prognostic factors at diagnosis and he is placed in a risk category (Risk meaning likelihood of relapse in the future). In his study there is low-risk (which basically means, you stay on the standard protocol of treatment); intermediate risk, high risk and high-high risk.

We already are fairly certain that Ethan will be in the intermediate to high risk category.  Which sounds scary but in terms of the study it basically means there are 4 different treatment paths (called "arms") that he could be given. How this is determined is on the computer. Randomization. In other words, it's random.

Which is a long way of me getting to my prayer at this step. I know based on the risk category the computer is going to "randomly" place Ethan on one of the treatment arms. But I also believe that God is in control. And so my prayer is that God would specifically place Ethan on the treatment arm that will best treat his cancer - whether that means the standard protocol or an arm that includes a different drug. At times the clinical trial thing feels scary to me and at other times I'm thankful that there is research being done to best treat the type of leukemia that Ethan has. Please join me/us in this prayer. The randomization will determine the course of the rest of his 3 year treatment.

So, as you can see, it's a big week ahead. Please pray for a clear mind to digest all the information to come, for discernment in the right questions to ask, and for boldness to ask questions again when we don't understand.

And please keep praying for Ethan. :)

day 22 - a great day!

We had our first visit at the outpatient clinic today for Day 22 of Ethan's induction treatment. Today he received the same 2 chemo drugs via IV that he has received for the last 3 weeks but we were blessed to get to take a week off from sedation and bone marrow biopsies.

The boys getting ready to head out!

Grandma Sheila and Ethan were matching today in gray sweaters :)

We were thrilled to learn that Ethan's blood counts have soared past the 500 threshold to over 4000! To give you some perspective - when we were discharged on Friday he was at 192 and so still neutropenic. Today, pretty much every blood cell count (white blood cells, red blood cells, platelets and hemoglobin) were all in the normal range which also means he doesn't need any transfusions at the moment - another huge praise!

Ethan was a huge trooper as usual and enjoyed several packs of goldfish crackers while he got his IV chemos. We also talked a lot about next week with his nurse practitioner - Tuesday 2/25 will be Day 29 of Induction and the last day of this first part of treatment. As I've shared before, this is a big day for several reasons - he will be sedated to have 3 procedures: a permanent port will be placed near his heart for future chemo and IV needs; he will receive a lumbar puncture for interthecal (in the spine) chemo; and a bone marrow biopsy. This bone marrow biopsy is the most important in determining what treatment he will have going forward. His marrow will be looked at under the microscope for total number of blasts left in his marrow, and also sent off for special testing to see the Minimal Residual Disease (cancer cells not seen by the human eye) that is present. These results put together with the results we have already received and his prognostic factors at the time of diagnosis are all a part of the puzzle in determining the treatment moving forward.

Ethan waiting patiently while we checked in at the clinic

Our nurse practitioner shared today (what we've already pretty much known) that his treatment will likely be classified in the intermediate to high risk treatment protocol, which is fairly common with T-Cell ALL. This basically means that he will receive more aggressive chemo up front because they have learned through studies and research that this is most effective in preventing relapse. Again, we won't know for sure until results come in after next Tuesday, but it's helpful for us to have a sense of what's coming.

After a busy morning at the clinic we decided to celebrate by having our first family dinner at a restaurant together since diagnosis. It felt good to do something so simple and normal. All in all a good day.

Please pray for Ethan in the next couple of days as the chemo takes effect from today. And please be continually praying for next Tuesday/Day 29. Please pray that Ethan's leukemia will be in remission and for discernment for his doctors in determining treatment and steps moving forward.

home and other thoughts

Ethan really has cancer. And this is really not going away. Those are the two thoughts that have been staying at the forefront of my mind lately.

It's a strange thing to process how life has changed since Ethan's diagnosis. Little things remind me of life before. Like seeing a pack of sushi in the hospital's cafeteria and remembering that Pete and I had gone on a sushi date the Wednesday before diagnosis. And then thinking about how the process of going on a date now will take a lot more planning and effort. Or when I walked past Ethan's classroom last week, on the way to meet with his teachers to talk about his return, and felt such sadness of him having to miss out on school right now because he is starting chemo.

Or the fact that I have yet to erase the calendar on our chalkboard wall that shows all of the things we did the week before diagnosis. It is a picture of exactly what we did before we knew he had cancer.

And today, while perusing facebook I saw some pictures of our friends at the beach. And I was reminded of how we had been making plans to go the beach again this spring, especially because of Ethan's LOVE of the ocean. And that made me think of our happy beach times this Fall.

Like this one...

 And this one...

 We really love the beach.

Oh the beach.

It's not like we won't be back at the beach again. We will. Today I was just reminded that life is different now and our plans have changed. Some things have been put on hold, for how long, we're not sure. And that's how the processing of all this goes. A moment of sadness to reflect and grieve, and then all of a sudden the kids are giggling with Pete, trying to have bubbles land on their tummies, and so on we go. There is a definite grief in all of this, but I'm thankful that it comes and goes like the waves.

And speaking of going...going we did, all the way HOME again yesterday!

We were thankfully discharged yesterday morning, even though Ethan's counts hadn't quite gotten to where his doctors had hoped. Since he had improved in his counts each of the 3 previous days, they felt confident that they were moving in the right direction but were also careful to say that we could be back in the hospital again next week after his next chemo, depending on how things go. We are learning that that is what we should expect - the unpredictable and the abrupt life of coming and going to and from the hospital.

Nevertheless it was a very Happy Valentine's Day getting be under one roof again!

As you can see, the movie was more important than snapping a smiling Valentine's Day picture for mommy. I'm letting it slide this year. :)

Thanks for continuing to pray for us. We are hoping that we will stay fever-free so that we can stay home for a while. Ethan's next chemo is on Tuesday, Day 22 of his treatment, where he will receive 2 IV chemo drugs at the outpatient clinic at Children's. Please continue to pray that Ethan's counts would continue to recover and also for our sweet Eloise, who seems to be down with a little bit of a cold too.

We are so thankful for all of you, our faithful army of prayer warriors. We hope you had a great Valentine's Day!

a good day

Today we stayed fairly busy at the hospital. Ethan's counts were a little higher today and are starting to climb in the right direction. Again, he needs to get to 500 to no longer be neutropenic, but at least we are heading in the right direction. They also started Ethan on some blood pressure medication today as his blood pressure has been hovering on the slightly higher end of what they would like to see. Hypertension is a very common side effect when taking steroids, and will hopefully go away once he is no longer taking them. For now, we are hoping that the blood pressure medicine will help to keep his blood pressure in the normal range. Yesterday he received a blood transfusion because his hemoglobin was low, but today things looked a lot better there too, so that's good. *And yes, it is a little strange to just put a short sentence in here about a blood transfusion but it really is par for the course with this chemo stuff so we are (sort of) getting used to it.*

We kind of bounce between tired and resting/watching a show, to getting a little stir crazy and taking a walk to the playroom or the Ronald McDonald room (aka "Donald's House" according to Ethan). Today we did some of that and then also got to do some fun activities that they had for patients on the 9th floor.

Here he is waiting very handsomely and patiently for our activity time to begin.

We got to have an experiment and make some quicksand!

And then, Ethan's favorite - we decorated cupcakes! Here is one he made for Daddy. Note the impressive mound of red sprinkles. :)

Please continue to pray for Ethan's counts to recover. Once that happens and he stays fever free we should be able to go home. We are told that sometimes kids can be at 0 for a while and all of sudden spike back toward normal range, and other times kids make a slow climb back up to 500. There is really no way to predict how or when this will happen for Ethan, but of course we hope sooner rather than later. Thank you for praying!

day 15

Today was Day 15 of Ethan's treatment. His sedation for his bone marrow biopsy went well, despite a long morning of not being able to eat, with a pretty intense craving for cottage cheese. In fact, the first thing Ethan said when he woke up from his sedation was "Where's my cottage cheese?" It was pretty precious. :)

We learned a couple of things today. First of all, after being admitted last night they started Ethan on some IV antibiotics as a precautionary measure in case he has any kind of bacterial infection, which we won't know officially until his blood cultures come back in 48 hours or so. At the same time his blood counts remain low and he is neutropenic, which is very normal because of the treatment. Today we learned that combining all of these factors together --- the fever symptoms he had, his low immunity, in addition to being in the first month of his treatment --- we will now likely be staying in the hospital for a while until his blood counts recover and he is no longer neutropenic. He will remain on the antibiotics most likely until this happens as well, as a precautionary measure since his body does not have the ability to fight infections. This is all very normal but it has made me so incredibly thankful that we were able to go home last week, even though it only lasted for a short while.

The preliminary bone marrow results from today's biopsy also came back very positive, showing a lot less blasts then last week, which is AWESOME! This is great news indeed. Again, the big goal of induction therapy (first month) is to have his cancer in remission by Day 29 which is in 2 weeks on February 25th. Please continue to pray that this would be so.

Some prayer requests:
-Complete healing from the cancer in his body and that he would achieve remission by February 25th.
-For his blood counts to continue to improve so that he is no longer neutropenic.
-For sweet Eloise to feel loved and taken care of as we get back into the mode of caring for Ethan at the hospital and Eloise at home.

back in the hospital

Just a quick note tonight to let you know that we are back in the hospital, admitted for at least 2 days. Ethan has been doing fairly well since we've been home but has had a couple of days where he has seemed more tired and pale.


Although he didn't officially have a fever, which is the big thing we always have to call about, Ethan did have some other symptoms today that pointed toward a possible fever - he was chilled at times, sweaty at others. Sometimes the steroids that he has to take every day can mask a fever, so his doctors wanted us to take him in to get checked out. Basically the concern is that if he does have an infection, they need to treat it with antibiotics because his body is immunosuppressed right now, and so can't fight as hard as it normally would. We got some blood tests done and cultures sent off to see if he does indeed have an infection but they started him on IV antibiotics that will last for 2 days just in case there is an infection.

In addition to all of this - Day 15 of his induction treatment (first month) is tomorrow with a scheduled bone marrow biopsy and 2 doses of IV chemo. He will be sedated for the biopsy and it is scheduled for 10:30am. We can expect to be in the hospital for at least 2 days while he gets his antibiotics, and then we will see how his body responds to the chemo as well.

Please keep Ethan in your prayers tonight and tomorrow. He's actually pretty excited to be here - the whole time we were in the ER he kept asking when we could take the "special elevators" to go up to his room. He was bouncing off the walls once we got here, checking out his special bathroom and a flashlight that has now become his new favorite thing. This boy is such a delight and I am so thankful for his exuberance about being here as it definitely makes things a lot easier all around.

steps

I went for a run in the snow yesterday. Before Ethan's diagnosis (so yes, just 2 weeks ago) I was starting to train for a half marathon in April and so had been running 4 times per week as part of my plan to continue losing my Eloise-baby weight that has been hanging on for WAY too long.

So anyway, I went for a run; taking a (very slow) jog around Tower Grove Park, on a path I've probably jogged around hundreds of times before in the 5 + years that we've lived here. Winter has been awfully cold around here and so the snow that usually melts soon after it comes, still covered the ground.

And it was strange because I came to this long, plodding hill that is well known to my feet and legs for causing the familiar muscle burn. It was strange because I've run the hill so many times before, and yet it no longer looked the same. The winding path that goes through the trees and green grass was covered with snow. The trees looked more stark and barren against the snow.

I couldn't see the path on a hill that is familiar. It was the same hill but different.

That is about how it feels to be home. It's the same, but it's different. We are doing the same things we've always done - reading books, playing with toys, watching shows --- the fun and the mundane, but it's not the same as it was before. People ask how we are doing and it's hard for me to say --- to say things are going well doesn't mean the same thing as it did 2 weeks ago; being tired means something different.

My run up that big same, different hill yesterday also reminded me that God is taking us along this path one step at a time. Most of my responses to the "How are you?" questions contain something like "moment to moment" or "little by little," since it's the best way that I've found to summarize our new life. Crunching up the big hill yesterday on a path covered with snow took more effort, more focus on each step I was taking, making it impossible (and not helpful) to think about all of the effort I would need to get to the top. One foot in front of the other. One step at a time.

And that is what this new cancer journey is too. I truly believe God is supernaturally protecting my heart and mind from fears of the future or anxieties about the what ifs. All the steps we will need to take to get to the top and then back down the other side. God knows the future, therefore I don't need to. He remains the same even though our life is different now. He is leading us one step at a time. Reminding me that that is our pace now - slow and steady, from one treatment to the next, from one day to the next, sometimes from one moment to the next. He is the one who keeps each step steadfast.

I'm so thankful that He is who He says He is and that He is using so many things - the effort of an afternoon run, prayers and encouragement from our faithful army, His Word --- to remind me of His character. That He is faithful. That He is steadfast. That He is our strength in such a time of weakness. That He knows the depth of our hearts, even when we struggle to give an adequate answer to the simple, difficult "How are you?"

And it's okay to keep asking that question, by the way. We need the care and encouragement. Just don't be offended if we sometimes aren't quite sure what to say.  :)

1 I lift up my eyes to the hills.
    From where does my help come?
² My help comes from the Lord,
    who made heaven and earth.

³ He will not let your foot be moved;
    he who keeps you will not slumber.
⁴ Behold, he who keeps Israel
    will neither slumber nor sleep.

⁵ The Lord is your keeper;
    the Lord is your shade on your right hand.
⁶ The sun shall not strike you by day,
    nor the moon by night.

⁷ The Lord will keep you from all evil;
    he will keep your life.
⁸ The Lord will keep
    your going out and your coming in
    from this time forth and forevermore.

Psalm 121

new normal

I remember like it was yesterday, the first time we took Ethan home from the hospital when he was born. A brand new mom and the sense of disbelief that the nurses and doctors were really releasing him into MY care. That I was now solely responsible for him, without the reassurance of the nurses telling me he looked just fine, and that each noise, murmur or movement was normal. Driving away from the hospital, ever so slowly, worried that each pothole and bump would somehow hurt my precious baby. Wanting everything to be ready - the house, the car, the new life. Wishing I felt confident but having to push through because it was time for us to go home and start our new normal. Trepidation and yet joy at the thought of taking him home.

Going home on Wednesday from the hospital was a lot like that.

We couldn't have been happier to go home early and yet it was scary to be released from the round the clock care at Children's. Being home has continued to be a mixture of both as we have gently begun to settle back into a new normal. The meds and cleaning and organizing and adapting and the hovering and double checking and gazing at him while he sleeps and giving so many extra squeezes to Eloise after such a long time apart--- day by day we are figuring out our new normal. And it really feels so very good to be home, with all of us together again playing, singing and just being together.

Ethan said he wanted to wear his glasses because he could see better.

And a hat because this drafty house had the thermostat down to 59 degrees this morning.

The schedule for now regarding Ethan's treatment is to have chemo and any biopsies or procedures done on Tuesdays at the outpatient clinic at Children's. We then have a home health nurse that comes on Thursday to check vitals and draw blood to see where things are at.

A few specific prayer requests:

• For all of the blasts (cancer cells) to be destroyed. The goal of induction (this first month of treatment) is for Ethan's leukemia to get into remission (aka -- no blasts) and for the rest of his 3 year treatment to keep him in remission. His bone marrow biopsy from Tuesday (Day 8 of treatment) showed less blasts than at the beginning of treatment, which is good. He will have another biopsy this coming Tuesday February 11th and then another on Tuesday February 25th. Please pray that by February 25th (or sooner) all of the blasts will be gone. 
• For ease in taking his medications, as it's a struggle for him to take medications that taste so yucky. He takes between 3 and 5 medications each morning and night - please pray for ease and calm for Ethan as he learns how to take these medications that are a permanent part of our new normal. 
• For Eloise's cold to be healed quickly. We came home to Eloise having a snotty nose and cough, nothing concerning but please pray that she is healed quickly and that the rest of us, especially Ethan, stay healthy. 

next stop: HOME

What a day we've had! Ethan's sedation went very well and they were able to get another bone marrow biopsy, spinal tap with the chemo infusion and they also cleaned up his pic line dressing. Everything went very well - they were even able to use the normal anaesthesia this time instead of the one they used last week that had some of the crappy side effects.

Shortly after we got back to our room and ordered (lots of) lunch Ethan received the other 2 chemo drugs via IV and then proceeded to eat a ridiculous amount of cheetos. The steroids that Ethan has to take every day this first month as part of his treatment make him quite hungry and it's been fun to see what kind of cravings he's had. Cheetos have been the mainstay the last couple of days; I'm sure his belly has a nice orange hue by now.

On to the best news of the day --- because Ethan is doing well and his blood counts have started to increase and move toward a healthy range --- we are being DISCHARGED. Tomorrow!

I think my mom, Pete and I all had jaws sitting on the floor when they told us we can go home when we are comfortable (which could have been as soon as today had I said so - holy cats). They had told us at the beginning of this that we could expect 30 days in the hospital, but it could definitely be less than that depending on how Ethan's body responded. So in the back of my mind I knew it was a possibility but wasn't expecting quite this soon.

Such GREAT news!

And news that also leaves me feeling nervous too, not knowing what its like to be at home, caring for my boy who has cancer. There are a lot of meds that he takes both morning and night and his Pic line to keep clean and flushed and home health aids to coordinate for weekly blood work and then weekly visits back to the hospital for chemo treatments. Not to mention the regular rhythm of life and what it all will look like once we transition back home. School and play time and the dog and outings and everything!

And so, as our motto has been from the start of this whole thing - one day at a time. We are blessed to live 10 minutes away from Children's and Grandma Sheila is here and we have a whole army of friends who have continued to bless us and hundreds of people keeping us in prayer and most importantly God who goes before us and who is forcing us to rely on Him for strength.

Seriously, we are going HOME. Thank you Jesus!

happy times at the hospital and chemo tomorrow

Today was a great day. First of all, we were IV fluids FREE, which meant no IV cart/pole thing being attached to Ethan at all times. It was awesome. I felt like I could have danced down the halls. We had a very low key day just hanging out in the playroom a couple of times and taking a few walks to the Ronald McDonald House/Room. Ethan even got to play fetch with a dog that they brought in to the playroom and rode toy tractor and fire truck cars around our floor.

See? He's free! First time in 10 days he hasn't been attached to a cart! :)

And don't mind the cheeto chin here - we enjoyed a midday snack in the Ronald McDonald Room, and Ethan talked up a storm about all of the people we know who love cheetos. (His poor bruise looks nasty but just looks worse because his blood counts are low.)

And while today was a busy day filled with fun things ---  tomorrow is a busy day filled with not-so-fun things. Ethan will be sedated for 2 procedures tomorrow morning at 10am - another bone marrow biopsy to see where things are at, and a spinal tap to inject chemo into his spine. He will also receive 2 other chemo drugs sometime tomorrow via IV.

Last week's sedation was extremely risky, as you may recall, with life threatening complications a possibility because of the location of the mass on his chest. Because of this I have been asking every single person that walks in our room - nurse, doctor, whoever - if the risk level remains the same and everyone has assured me that there is a greater comfort level this time because they 1. know that he handled the sedation well last week without complication and 2. the mass has most likely already shrunk in size because of his week of treatment. This is comforting to hear, but it still is nerve wracking for us.

With that said - tomorrow (or whenever you read this!) will you please pray that:

-Ethan does well during the sedation process and that there are no complications
-Ethan's recovery from sedation also goes smoothly. The medication they use has side effects of agitation and bad dreams/hallucinations through the first day or 2 post sedation.
-Ethan's blood counts would start to recover and that his bone marrow would continue making new, healthy cells. He is currently at a high risk of infection because his blood counts are low and we will be in the hospital until his counts get to a more healthy level that shows the doctors that his body is able to fight off infections. In essence, please pray for healing for my boy's body.

Ethan's procedure starts at approximately 10am tomorrow morning and should last about an hour. Thank you all so very much for your continued prayers and support!

He knew

For those of you who have had a chance to visit Ethan's room at our house you know that one of his walls is covered in "photo wallpaper." He's always loved photos and it was a fun way that I found to put up photos of all of our friends and family that are special to him, many of whom live far away.

Since we are blessed to live only 10 minutes away from Children's here, I have been able to go home and shower and repack my overnight bag several times this past week. It's usually these trips back home that are the hardest, as I can physically see the change that has happened in our life. Most difficult, is when I take a walk into Ethan's room, everything now quiet. The toys are put away, his bed made neatly. Each time I've gone home, I've sat on his bed and just stared at his photo wall. And the thought that continually has run through my mind as I've stared at each picture of Ethan with all of the people that he loves is -- He knew.

God knew. He knew when I held my big spud in my arms for the first time on June 6th, 2010. He knew when we welcomed his baby sister on May 28, 2012. He knew when we ran through the water fountains last summer in Tower Grove Park. He knew when we splashed in the ocean this fall. He knew when we celebrated Christmas in Minnesota just a month ago.

God knew that my son would have cancer. He knew that this would be part of his story. He knew.

He knew, and even better yet, he knows. He knows my son intimately, the number of hairs on his head that will soon fall to the ground. The aches in his tummy. How many cancer cells live in his blood. How long he's had this disease. What the road ahead will entail. Everything I want to know but don't. Everything I long to see, but can't. God knows, and He is in control. And the peace that I find in that truth is a life preserver to my soul. In the words of my Auntie Gail - we are SAFE. God is who He says he is - He is good. He is loving. He loves us so much that he sent HIS only son to die so that we might have life. He loves Ethan even more than I do. And He's got this. He is the God of the universe and He is in control. He's got this.

Pete and Ethan have been memorizing Psalm 16:8 together over the last several months --- and now amidst such a trial as this, we can see how God used that scripture memory to help knit the truth about who He is into our hearts to remember and live by now. I've included all of Psalm 16 below (verse 8 bolded in red), as it's been such a comfort and joy to all of us.

Preserve me, O God, for in you I take refuge.

I say to the Lord, “You are my Lord;
    I have no good apart from you.”

As for the saints in the land, they are the excellent ones,
    in whom is all my delight.

The sorrows of those who run after another god shall multiply;
    their drink offerings of blood I will not pour out
    or take their names on my lips.

The Lord is my chosen portion and my cup;
    you hold my lot.

The lines have fallen for me in pleasant places;
    indeed, I have a beautiful inheritance.

 I bless the Lord who gives me counsel;
    in the night also my heart instructs me.

I have set the Lord always before me;
    because he is at my right hand, I shall not be shaken. (v. 8)

Therefore my heart is glad, and my whole being rejoices;
    my flesh also dwells secure.

For you will not abandon my soul to Sheol,
    or let your holy one see corruption.

You make known to me the path of life;
    in your presence there is fullness of joy;
    at your right hand are pleasures forevermore.

Psalm 16

a quiet day

We are thankful for a quiet day here with not a whole lot going on. Other than his normal medications and steroids there was nothing else scheduled, thankfully. Ethan was definitely tired today but we enjoyed several trips to the playroom here, some tv time and taking several tours around our floor - a common routine we do each day - Ethan likes to show us all where all of the bathrooms, kitchen and elevators are. :)

It's hard to believe that we've already been here for one week and yet it also feel like we've been here for a lot longer, considering all that has happened in just that short amount of time. We are so very thankful for God's provision for us this week - it just cannot be said enough. Your prayers, love and support are being used by God to sustain us during a time we could have never imagined ourselves going through. Thank you, thank you, thank you - and please continue to cover us all, especially Ethan, in prayer.

Some specific prayer requests as we look forward to the coming week:

-For the mass in his chest and the cancer cells in his blood to continue to be wiped out from his treatment.

-For Ethan to remain fever free, especially right now as his "counts are dropping." As the chemo attacks all of the cells in his blood - (red blood cells, platelets, and white blood cells) his counts for each of those will drop and his body will then slowly start to make new, healthy cells. When your blood counts get below a certain threshold, you are considered to be "neutopenic," which basically means that your immune system is not able to fight off infections very well and so he is at greater risk. Ethan's counts today put him below the threshold and so he is at an increased risk for infection - again, this is normal, but please pray that his body would recover quickly from this round of chemo.

-For all of us to remain healthy - Pete, myself, Eloise and of course, Ethan, and Grandma Sheila too. As his primary caregivers right now, we have a job to do. Please pray that we would remain healthy and infection free!

Thank you all for your continued prayers!