summer on the move

Usually, when the 4th of July comes each summer, I start to feel a little sad. Sad that the fun of summer is already half-way over and sad that Fall will be here before I know it.

The 4th of July will already be here next week and this year I am happy. And thankful. It means we are that much closer to Maintenance, the last and longest stage of Ethan's treatment that should start sometime at the end of September. It means we've made it through some of the hardest treatment Ethan will have to hopefully endure. In some ways, I can't believe we've already come this far in Ethan's treatment. But I'm grateful we're here. That Ethan's still in remission and that God has helped him to endure the last 5 months of his treatment and carried us all this far.

We've thankfully been enjoying a nice time at home, and have been fairly busy just enjoying some low-key togetherness. My dad and step mom were in town this past weekend and we had a chance to celebrate the last of the birthday parties for Ethan & Eloise. This time we got to have the doctor party that Ethan specifically wanted.

Sleeping bags from Grandpa Todd & Grandma Bonnie were a big hit. Lots of "camping" after the party. :)

Eloise also had an especially big weekend as we moved her on up to a big girl bed!

And we went to a Sunday afternoon BBQ in the park. It feels so great to be able to do some of these normal summertime things!

Sunglasses have been big around here lately. And anything else that the other sibling has.

And tonight we went to Ethan's favorite restaurant, Chili's.

So as you can see, we've had a chance to get out more often this past week and it's been great. Ethan is scheduled to have his labs checked tomorrow and then will have chemo on Thursday this week - which is the second to last treatment day for this phase. He has to be sedated to have intrathecal chemo and will have 2 other IV chemos. We are scheduled to get started at the clinic around 8:30 and his sedation is scheduled to start at 10:30.

Please pray for protection over Ethan during Thursday's sedation and that his chemo infusions go well. After Thursday's treatment we have one more treatment scheduled for this phase in another 10 days and then a couple weeks after that, will start the next phase, Delayed Intensification, sometime at the end of July.

Thank you for continuing to pray for Ethan and for all of us. 

spaghetti & a good week

You guys. I am beyond thrilled and relieved to tell you that Ethan is feeling so much better! The real turn seemed to start on Tuesday night with spaghetti, brought by our friend Kelly (yes, the same Kelly who brightened our Sunday last weekend). Ethan actually requested to have that spaghetti for dinner, and then proceeded to eat spaghetti for breakfast, lunch and dinner for the next two days until it ran out. It was glorious. After so many days of such a poor appetite, watching him eat made me want to sing from a mountaintop. For real.

 

As the rest of the week went on, Ethan's energy increased and so we were thankfully able to have some quality time just hanging out together and getting out a bit. 

Overjoyed to be pushing their own carts at Trader Joes.

"Picking lettuce" (vines) from their "garden"

A picture of Eloise lately - independent and getting in to everything!

We even got a chance to have another birthday celebration for Ethan & Eloise with the Weseloh side of the family - enjoying the beautiful weather on Saturday with a bbq and some cake. Oh, and bubbles too. 

The cousins (and Betsy) ready and waiting for the bubbles to begin.

#1 - Check out the intensity of Pete with that bubble wand #2 - the kids! and #3 - Betsy, who thought the bubbles were all for her. :)

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Today we had a chance to celebrate Pete for Father's Day. The kids and I had some fun earlier in the week getting a special picture ready. 

Per usual, our photo session was going just fine...

 Until it wasn't. :)

I would be remiss to not take a moment and publicly share how much of a blessing my sweet Pete is to our family. This year has been unexpected and taken us to the depths. Ethan and Eloise are abundantly blessed to have Pete as their daddy and I am so thankful that Pete is my guy. I could not imagine having to walk this journey with anyone else. Pete - thank you for steadfastly praying for all of us. For not hiding your fears and struggles. For opening your life and heart to honorable men who can speak into your life. For loving our sweet babes and giving them "belly sandwiches." For letting me talk and cry and be angry and sad. I love you. Happy Father's Day!

This week Ethan is scheduled to have chemo on both Monday and Tuesday. His lab work from Friday came back great with his ANC being over 4000 and so he will remain on schedule. He will get 2 IV chemos on Monday and then get the IV chemo on Tuesday that has the higher probability of an allergic reaction. My dad and step mom are coming in to town on Thursday for a long weekend visit (hooray!) and so we are praying that Ethan (and the rest of us) will remain healthy. 

Thank you so much for praying for us, you guys!

a new week

Last week was probably one of the toughest weeks we have had in a while. The combination of everything -  a long week of hospital visits with a couple day admission, being sick with a virus and the c-diff infection as well as getting 2 chemo infusions on Friday - it has all really taken a toll on Ethan and he's pretty wiped out. We were thankfully discharged on Friday (his birthday) but for most of this weekend he has wanted to sleep and lay low. It's been a tough week and weekend for Ethan and all of us.

I had started to write this blog post earlier this morning with the purpose of really putting some specific prayer requests out there for Ethan and all of us --- but before I finished writing our friend Kelly (and also frequent babysitter of our two babes) stopped by and helped to absolutely brighten my boy's entire day.

Because sometimes, I guess all you need is Kelly.

So, it was a great way to end the weekend and I'm hopeful that things are taking a turn for the better with his recovery from his infections and the chemo. With that said, we do still have some specific prayer requests:

• Please pray for Ethan's continued healing from the virus and the c-diff infection. The c-diff in particular can be a rough bug and sometimes take a while to heal. Please pray that he heals quickly and that the antibiotics he is on will work!
• Please pray for Ethan's appetite. We all know what it feels like when we have a stomach bug and so having 2 on top of chemo isn't making it easy for Ethan to want to eat, and yet he needs the calories to help gain back some strength. Please pray that his appetite will increase. 
• Please pray for good rest this week, for Ethan and all of us. Please pray that Ethan's sleep would be good, sound and help his body to recover.

Ethan's next chemo is scheduled for a week from Monday on June 16th. I'm thankful that we have a week free from any scheduled hospital visits and am hopeful that we can all take this week to recover, especially our boy.

ethan turns 4!

Ethan Matthew Weseloh, you are such a delightful son. You have the best twinkle in your eye and such a joy that radiates from your heart. I love your zest for life and your enthusiasm. We never would have imagined that this is what life would be like when you turned 4, but you have truly been such a champ through such a huge life change.

You continue to amaze people with your height - at 3 foot 9 in, your doctors last week told us that the computer questioned if it was indeed an accurate height for a 4 year old!

I also really admire how thoughtful and empathetic you are. If somebody is sad you are very aware and often run to grab a tissue. It's such a wonderful quality to have, and I pray that God continues to grow your empathy and awareness of how people are feeling.  I also am amazed at your remarkable memory, especially for places. You remember what things were there, what color the door was, and such details. Your love for your sweet sister Eloise is also such a joy to see. She is abundantly blessed to have you as her big brother.

We were thankfully discharged on Ethan's birthday on Friday, and so were able to spend most of the day at home. Ethan was pretty wiped out from such a long week and so most of the day was spent resting, but we did get a chance to go out for birthday dinner to his favorite restaurant, Chili's.

Ethan - big eyes, big smile (?) and mom - look crazy!

Dad and our glam girl, who wore her sunglasses the entire meal

Happy 4th Birthday Ethan! We absolutely just love you so very much, and are so amazed to see how much you have grown. What a blessing you are and such a DELIGHT!

upswing

Ethan was feeling much better today thankfully. As of tonight it has been 24 hours since he has had a fever and it seems his appetite improved a little bit today - all good signs. His team would have potentially been okay with sending us home today but after the week Ethan has had with 3 trips to the hospital for the same symptoms and a fever that has come and gone - we agreed that we would stay in the hospital for one more day just to make sure that he doesn't spike another fever, which would have just sent us right back to the ER.

He is also already scheduled to have 2 IV chemos tomorrow and since his counts are good (over 3400 today) they still plan to go ahead with the chemo even though he is fighting these infections. The plan right now is to hopefully get both chemos done in the morning and then be able to be discharged so that we can go home and (rest) but most importantly celebrate Ethan's 4th birthday!!!

Thank you all for covering us in so much prayer! And for our army here who immediately sprang into action once we were admitted, offering coffee runs, meals, help with Betsy, watching Eloise, getting our house wiped down - it's humbling to be served by you all and we are so grateful.

I can hardly believe that my boy turns 4 tomorrow - pray we get to really celebrate. Now that he's starting to feel better, he's getting excited. :)

reality

The other day I was at Target with Ethan and Eloise and while we were waiting for the elevator, a boy a few yards away from us pointed and said to his mom, "Mom, that boy has cancer." The mom quickly pulled him aside and, shushing him from speaking so loudly.

I felt like I was hit in the gut, honestly. Which may sound silly since of course, since Ethan does have cancer. But there was something about having another boy close in age point it out and recognize it that caused such a deep grief in my heart - a reminder that the cancer is real. People see it. They recognize it.

Today, we had to go back to the clinic because Ethan's fever that he's been battling for the last few days has still not gone away. We rode the elevator with another lady on our way to the HemOnc floor and when she got off on her floor she asked me: "What kind does he have?" I was startled - "T-Cell ALL." And as the doors closed she replied "My child is in remission, you all will be in my prayers. Just remember that God is good."

Recognition again, but this time from someone who knows. She not only recognized the cancer but if she has a child in remission, than she knows the journey we are on. And her parting words? God is good.

God is good. Something I believe to be true and yet to be honest, right now that truth doesn't feel so good. On one hand, His goodness is how we are surviving any of this and yet on the other - none of this feels so great and in fact it is pretty awful to have to watch my boy suffering and be powerless to really help.

Pete said it best the other night when he said that theology right now is the rock that we stand on, but it's not necessarily the cozy blanket that we snuggle up with at night. It's what carries and sustains us, but doesn't always bring a cozy comfort. Which in a way is refining. My faith is being refined in the midst of a painful, uncomfortable and uncertain journey where I can hang my hope on nothing else but on the truth of who God says He is. There is nothing else to stand on. I have to believe that God is good, even when it doesn't feel good. And when I don't believe it? Dear God, please help me in my unbelief.

For God alone, O my soul, wait in silence,
    for my hope is from him.

He only is my rock and my salvation,
    my fortress; I shall not be shaken.

On God rests my salvation and my glory;
    my mighty rock, my refuge is God.

Psalm 62:5-7

So that all to say - we are just in the midst of a tough stretch this week. Which made the anonymous lady in the elevator's comment feel more raw, but in a way it also encouraging, like a little reminder or small push at my back to keep going, to look up to Jesus more than at the sorrow that I feel. It was refreshing, and for that I am thankful.

Once we arrived at clinic, Ethan's team decided pretty immediately that they wanted to admit him in order to try and figure out the source of the symptoms that he's been having. After labs and cultures, results came back showing that he is positive for both a viral infection and a bacterial infection. He has an enterovirus - which is a common virus that causes a lot of GI upset and fevers, and also has c-diff - which is a bacterial infection common in hospitals and in patients undergoing chemotherapy.

So, we're here now in the hospital, most likely for at least a couple of days while they get treatment started and make sure he is improving. Please pray that the medications would be effective and that his body would begin to heal from both the virus and infection. It's a huge bummer that he's got a double-whammy sickness going on right now, but I'm thankful that we discovered what the culprits are so that he can get the right medicine and start feeling better.

Thank you for continuing to pray for us and especially for my sweet boy.

coffee in the ER

Today we had a friend drop off Starbucks at the ER. For Ethan. Talk about a picture of our new life - ordering a caffeinated beverage purposefully for our almost 4-year old boy and making him drink it in an attempt to relieve chemo side effects.

It's been a long day.

Since our ER visit on Friday night, Ethan did not spike another true "fever" but his temp had still been slightly elevated. He's also been complaining of a headache, so much so that I had scheduled an appointment with our nurse practitioner this morning to check things out.

Unfortunately, instead of getting to go to the clinic at 9:30am, Ethan spiked a fever at 4am and so we instead had to take a trip to the ER. And it was a long morning/day there. The ER team had trouble accessing his port and after several attempts, they determined that his port had a clot in it that was preventing it from working. Thankfully, we once again had a great team of nurses, and after a few hours, they were able to get his port unclotted.

So, after a 6 hour stay we were thankfully able to be discharged. The team still thinks that his fever is due to a virus and that the headache is unfortunately a side effect from his intrathecal chemo last week. They recommended trying to give Ethan some caffeine, as it can normally help, and so we decided to give a Starbucks frapaccino a try, since Ethan refuses to have pop.

And so it was an unexpected day, spent in a way we didn't anticipate. We are all tired and worn out from the emotion and the early morning. But honestly, I am also very thankful. Incredibly thankful, really, for all the people who helped us get through this unexpected hard day:

• For all of the nurses in the ER who took such good care of my boy.
• For our friends the Starks who watched Eloise at a moment's notice early this morning, so that Pete could join me at the hospital.
• For our friend Kelly who dropped off coffee for Ethan (and us), and then brought us dinner tonight.
• For our nanny who came on a day she wasn't scheduled, to help take care of Eloise. 
• For the rest of our family and friends, who were ready and willing to help with whatever we needed and who prayed for Ethan when things escalated.

We are just so immensely blessed to have such a family of people helping to take care of us when we need it. Words cannot express how thankful and grateful we are. Thank you so much, dear friends and fam!

Specific prayer requests:

• Please pray for healing for Ethan from this virus or whatever it is, and for protection over his body from the effects of chemo. 
•  For my sweet girl Eloise, who is also impacted on hard days like this.
• Again for Ethan's birthday on Friday, that it would be a day he can really celebrate and feel loved.

weekend recap

What a busy weekend it has been - filled with mostly good things, but sure has left us feeling pretty tired! After last week's 2 days of chemo infusions on Wednesday and Thursday, Ethan spiked a fever on Friday night at around 6:30pm when we were winding down for the night. So, off to the ER we went as we always have to have cultures and labs drawn when he has a fever in order to rule out the possibility of a central line infection. Thankfully, Ethan was a major trooper - in fact, he is thankfully usually pretty excited to go to the hospital since there are lots of elevators to take and places to roam. We were also blessed to have a fantastic nurse, which is always such a huge help during hours-long ER visits.

Our champ at the ER, just "slightly" sleepy at 10pm. 

Thankfully Ethan's counts were still up - over 2200! And so they gave him a 24 hour antibiotic in case of a central line infection, drew labs and cultures, and then gave him some tylenol to help with the fever. And then - discharged, with orders to call if he continued to have fevers through the next day. 

Saturday morning Eloise had "Show Week" at her Little Gym class. Since Ethan's diagnosis, Pete has been the one taking Eloise to her weekly class on Saturdays and they've enjoyed some special Daddy/Daughter time, but I was excited to come with this week too to see our girl and all the skills she's gained in class.

Very excited about her special medal!

Somehow, all of the kids stayed still for a group photo. :)

Saturday afternoon we had been planning to have a small birthday party with some of Ethan & Eloise's friends and some of our friends but because of Ethan's fever on Friday that was still there on Saturday morning we decided to cancel the party and instead just had a mini-celebration with my mom and stepdad and my sister and brother in law and their kids. 

Ethan requested a doctor birthday party this year and so even though we've postponed the party for now, he and Eloise both got some great "doctor" coats from Auntie & Uncle Russell that will be great for whenever we get to have the party!

So all in all, a busy weekend and today (Sunday) we've pretty much laid low and have been resting. Ethan's fever was gone by yesterday afternoon (thankfully) and since he didn't have any other symptoms of a sickness I would guess that his fever was due to the chemo that he had last week, as 2 of the chemos have "fever" listed as a side effect, although there really isn't a way to know for sure, of course. Whatever caused it, I'm just thankful that it's gone and that we weren't admitted. 

This week Grandma Sheila is heading back to North Dakota after about a month long stay. Ethan's next chemo infusion is scheduled for this Friday June 6th - also his 4th birthday! I'm bummed of course that he has to have chemo on his birthday but we've got a morning appointment scheduled so hopefully our clinic visit will be a short part of his special day. 

A big prayer request this week is for Ethan's birthday - he has been talking about his birthday for months now and has been so excited. Can you please pray that he will feel well, all things considered, and we can really celebrate? Thank you!