Auggie’s Leukemia Journey - 7W and Beyond

05/09/2024

04/29/2024

WE GET TO GO HOME TODAY!!!

04/27/2024

Good morning from this goof!

Today is a big day, we’re off isolation! But unfortunately his anc is only 30, so we’re still a ways off from getting to go home. Bummer.

Other than that, we’re just hanging out. He’s eating and drinking great. He wants so many pancakes and they only do them for breakfast which makes him very mad.

04/26/2024

Today has been a good day for Auggie!

He’s feeling better, no more fevers and no more bad diapers. His cultures are all coming back negative which is great. He’s been removed from “contact plus” to just “contact” restrictions.

His anc was only 10 once again this morning, but we’re hoping the ivig he got today will help bump his numbers up. We wanna go home!

The joy cart came around and he got a new game called pop the pig and he absolutely loves it! He’s been playing that all day and doing puzzles too.

We got visitors tonight, daddy and Zane! I didn’t get pictures but we were all so excited to see each other.

Mommy has hurt her back once again and I’m having trouble just standing, so hopefully we get to go home soon so I can rest it better at home.

04/25/2024

We’re heading to bed finally.

Unfortunately he did have another fever this afternoon around 1:30. So that’s a bummer.

They discontinued his fluids this evening since he’s drinking and eating so much better today. And he came off one of his monitors. Less cords is a big plus!

He should be getting IVIG tomorrow and maybe that’ll help his counts recover. We’ll see.

Now that he’s getting older and seeing less of the hospital, he’s very vocal about how he wants to go home. This isn’t his routine anymore and he realizes that it’s not as fun as being home. It breaks my heart every time he asks if we get to go home now (he asks frequently) or if we will when he wakes up in the morning.

I don’t have anymore fun pictures from today so here’s a flashback.

04/24/2024

This is the face of a boy who has been hooked up with goldfish!!

He’s doing much better today. No fevers overnight. He probably gets to come off the monitors today so he can move around more. If he starts drinking better, they’ll discontinue his fluids too.

His anc today was only 10, so quite a ways away from our goal of 250. It’s okay though because at least he seems to be feeling better.

We’re hoping his comes off of contact precautions so he can see his best friend Luna. Fingers crossed!

04/23/2024

Look at that cheese!!

He got some more Tylenol like an hour or two ago and it’s really helped to perk him up a bit.

This mornings labs showed that he was very anemic (5.1) and he was also very dehydrated. His blood pressure was low with a high heart rate and a fever and he was just miserable.

So they gave him a bolus of fluids and blood and have been helping the fever with Tylenol. All these things have made such a difference and he’s finally starting to look like himself again. I didn’t realize how pale he was until after he got that blood and pinked up a bit.

He has to be fever free for 24 hours and his ANC has to be at least 250 and trending upwards for us to go home. Last night his number was 0 but this morning he went up to 30! Super awesome.

Fingers crossed for getting to go home soon!

04/23/2024

My poor baby feels so crummy.

I wish I knew why and how to fix it.

04/23/2024

Let me tell you a story about my evening.

Auggie’s temp kept creeping up and eventually peaked at 101.3 at the hotel.

Then as I was on the phone with the on call doctor, we were being evacuated from the hotel because of a fire. Yes. You read that right, there was a fire at our hotel.

But here we are now at the ER. We’ve had our port accessed and other pokes and now antibiotics are running.

Busy day.

04/23/2024

The magic number is 100.4 degrees.

We’re currently at 100.2

Ugh. At least we’ve got Bluey.

04/22/2024

So.

Auggie has been having some belly issues for the past 4-5 days and the clinic wanted us to get his numbers checked this morning.

Unfortunately his ANC and everything else basically tanked from last Tuesday when we were up here. His hemoglobin is very low so we are staying the night in Louisville tonight for an early appointment to get a blood transfusion tomorrow.

On top of that, he’s starting to feel warmer and warmer since we got to the hotel and I’m anticipating a fever before we can even get to the appointment.

We’ve been bragging about how great he’s been and how awesome he’s doing so this just hits hard.

03/25/2024

Look who had a great time at the egg hunt today! And do you notice his tube free face?! I’m so proud to report that he’s doing great taking his meds! Hopefully we stay that way!

03/23/2024

Late night update:

We think it might be a stomach bug he’s got. Zane had something like it at the beginning of the week. It seemed to be pretty short lived, so hopefully it’ll be the same for Auggie (and now mommy) too.

Also, WE TOOK OUR MEDS BY MOUTH TONIGHT!!
We are so excited and proud of how big he’s being.

03/22/2024

So. It was definitely a rough morning.

Auggie got sick this morning and his NG tube came out. After we got him and the floor all cleaned up and his temp checked, we called up to the clinic.

They had a spot for us to come in to get his tube replaced. We still needed to give him his morning meds so we (not all that willingly on his part) gave them to his by mouth. He actually did really well and we asked the clinic if we could hold off on the tube and see if we can get back to meds by mouth.

So that’s the plan for the weekend. We’re going to strongly encourage and try to give his meds by mouth. Since he wasn’t getting tube feeds anymore, it’s not really an emergency. So we’ll follow up with clinic Monday to update how the weekend went.

Here’s to fingers crossed and all the prayers you wouldn’t mind sending up!

Look how sweet his face is!

03/19/2024

Last night we stayed at the dongle house for our early morning chemo today. Since he had Covid recently, they postponed his LP again. He’s still got coughs and snots so no sedation.

In a turn of events they tested him for respiratory things today while we were there and he tested positive for Covid. Is it a “still” positive or an “again” positive? No clue. But he’s positive.

Other than that, everything went fine today.

We’re counting down the months….10 left!!

03/03/2024

Welp. Auggie has covid.

Mom, dad and biggest brother tested positive Monday and it wiped us out big time. After he fell asleep out of nowhere tonight (and he stopped naps a while ago) I knew something was up.

This sucks. But as long as we keep fever free (100.4 or higher is a fever here) we can probably ride it out at home.

Prayers would be greatly appreciated.

02/20/2024

Good morning friends!

Today was supposed to be an LP day, but with his respiratory stuff they decided to postpone it until day 29. So instead of going over to the hospital, we walked over to the infusion center side of the clinic.

He’ll be getting his monthly antibiotic infusion and his IV chemo while we’re here.

02/14/2024

Auggie was thrilled when I told him I had something for him today.

I wish you could have heard his little voice yell “I got a JoyJar!” So excited.

Thank you Team NEGU: Never Ever Give Up for these boxes of encouragement for our little warriors. It makes his day every time!

02/07/2024

Auggie did a big thing today…

his first dentist appointment!

He was so brave and they said his teeth look good for having all the chemo he’s had.

Love this boy to pieces

01/31/2024

Please pray for this baby.

01/23/2024

Up at the clinic and infusion center today.

01/09/2024

Sneaky boy likes to take pictures on my phone.

01/04/2024

Busted out!

01/04/2024

Look who’s feeling better!

01/03/2024

Look at that smile!

So we think he’s just got a stomach bug, we’re hoping that’s all this is. His counts look great, so our goals to go home is to getting back to eating and drinking on our own and not spiking more fevers.

He’s been hanging out in bed all day, took himself a snooze even. I think he’s starting to perk up which is great to see.

Thank you for all your prayers!

01/03/2024

We made it up to our room. He’s eating some cereal now and we’re gonna try to get some sleep in a few.

01/03/2024

Welp.

01/02/2024

Sleeping for the second time since we’ve been here. He quite obviously does not feel good. I hate it.

Swabs came back negative so that’s good I guess. I wish we had a reason for his fever that he’s still holding onto.

I hate this so much. I started my day early so I could go to the gym and have some me time and now I just feel absolutely terrible for it with my baby being sick. And we went to church Sunday for the first time in a while and I feel so selfish. I just wish I could keep him in a bubble but also like be able to go do things with him in his bubble. Ugh.

Please pray that it’s just a stomach bug or something simple and that hell get better sooner rather than later. I can’t stand seeing him this way and I also don’t want to start out our year by being inpatient. School starts back tomorrow for the kids and I start back on Monday. This was not on our schedule!

Thank you friends.

12/12/2023

This sweet boy of mine and I are going shopping this weekend to get a few toys/crafts/goodies for the kids up at the hospital on the cancer unit this holiday season. Many will be spending Christmas in the hospital and that’s no place for a child to be.

We would love to be able to get a fair amount of things for these kids and if you feel led to donate towards our adventure, that would be so appreciated. I know money is tight for a lot right now with it being Christmas and all and we totally understand.

If you’d like to contribute financially, my Venmo is or if you want to donate toys/activites/goodies, that’s awesome! I think we’re going to make a special trip up there next week to deliver gifts and the blankets (I’m almost done!) to these kids.

Thank you friends :)

12/10/2023

We went to Joann’s today to get the fabric for the last blankets for the kids in the hospital and Zane absolutely loved picking things out.

He also loved picking up little toys they had and coloring books and saying “I bet the cancer kids would love this.” His heart is so sweet and I’m so blessed to be his mom.

But this got me thinking. Would anyone want to donate a few dollars so that Zane and I can go shopping for the cancer kids who are going to spend the holidays in the hospital? I think it would mean a whole lot to his heart and mine. Last year we were on survival mode at this time and weren’t able to do much of anything but get through the days. This year we’re in a much better spot emotionally and would love to do what we can.

If you’d like to donate in a monetary way, my Venmo is or if you’d like to gather items to give the kids, let me know and I’ll get them. The next time we go up is December 27, but we may make a special trip the week before to deliver things.

We appreciate everything that has been done for us the past year and we’d really like to bless others any way we can.

Enjoy this Auggie selfie he took at the doctor the other day. He’s already a pro hahah