Late night update everyone!! 

Overall, today was a decent day. We started off on the wrong “foot” but it got better from there. 

Miss Octavia had a rough night because her IV was bothering her so she was up a lot. Early this morning, they had some difficulty getting her line to flush or get enough blood to run her CBC so we decided to get a new line placed for her in a few hours… well, Octavia had other plans. She decided to just rip out the IV in her foot because it was bothering her so much and unfortunately got blood all over her blanket 🤦🏼‍♀️ so definitely needed a new line!! 

But they placed it in her arm and put a little soft cast thing over it to prevent her from getting to the line and things were better after that!! 

Other good news….. her hemoglobin is holding strong, so no transfusion need for blood. Her ANC went up ever so slightly to 10. AND HER PLATELETS FINALLY WENT UP TO 234!!!!! 🎉 and on the best news, we’re still pending negative for her infection… going on hour 57 currently which seems so promising!!! 💕 

We’re looking good to get her PICC line placed on Friday, and then we’ll go from there! 

More to come when we have it 💪

No major updates for today which is amazing!!! 

Platelets dropped this morning, but still within good range. Hemoglobin staying strong, no transfusions. ANC still stuck at 10, but better than 0!!! ♥️ 

Since her culture is still negative, she’s scheduled to have her PICC line placed in the morning around 9 under sedation. Then we need to finish our round of antibiotics out, and wait for her numbers to recover. 

We need to be at an ANC of 200 for two day in a row to be able to break out of here for a little bit. We shall see!!! 

More to come when we have it!!! 💪

Easy update for today!! 

WBC: .8

Hemoglobin: 9.6

Platelets: 162

ANC: still 10 😔 

She went in first thing this morning to have her IV removed and her PICC line put in. She’s not a huge fan so far, but we’ll get used to it I’m sure after a few days. 

We’re about halfway done with the antibiotics, and continuing to watch her numbers. 

More to come when we have it!! 💪

Not much to update for today… 

WBC: .9

Hemoglobin: 9.4

Platelets: 124

ANC idiotically has been stuck at 100, not 10 🤦🏼‍♀️ but yay for 100!!!! 

Day 6/10 for her strong antibiotic, cultures still negative for the infection, and just impatiently waiting for her to get a better jumpstart on that ANC! 

On a really good note… her PICC line doesn’t seem to be bothering her that much, and since someone amazing sent these super adorable sleeves for her line, it makes it more pretty and fun too!!! 🍓 

More to come when we have it, but for now it seems we’re pretty status quo while we wait for her little body to recover 💕 💪

Unfortunately, today took a small step backwards. 😞 

WBC: 1.0

Hemoglobin: 9.0

Platelets: 109

ANC: 100 still

Octavia was up around 1am last night. She seemed to be good and in a decent mood, up playing until around 4 am. Come 4:30 though she wouldn’t stop screaming. 

Gave Tylenol, nothing. Gave a stomach med, nothing. Gave Oxy and we stopped screaming but still not comfortable and clearly in pain. Go to change her and we find the source of pain. She has a diaper rash that happened so unbelievably fast. Red everywhere with an open sore. 😭 

So we decided to apply some nystatin to prevent an infection, put barrier cream on, and leave her diaperless laying on a chuck to help air it out. Drs think it’s just from the antibiotics since she’s on such strong ones to kick out the infection, but they’re also going to order another abdominal ultrasound just to make sure there’s nothing going on in her belly to be causing it. 

More to come when we have it!! 💪

Small update to close out the day… 

Octavia’s ultrasound came back clean, no concerns! 🎉 and keeping her diaperless the majority of the day seems to have helped with the rash as well. Not perfect, but more tolerable which we will take the small win for! 🙌 

More to come when we have it! 💪

Update for today… 

WBC: .9

Hemoglobin: 8.8

Platelets: 84

ANC: 100 still

But, her rash went away completely and she’s no longer in pain so that’s amazing!! And the flow cytometry immunophenotyping test the ran the other day (test for cancer cells) also came back negative so that’s also amazing!! 

Just need these stinking numbers to start reflecting all the amazing things so we can get home for a little bit. 🥺

More to come when we have it!! 💪

Early morning update!!! 

WBC: 1.6

Hemoglobin: 9.7

Platelets: 115

ANC…… 500!!!!!!!!!!!!!   

🎉🎉🎉

Little miss decided to kick it into gear and get her numbers working finally!!!! Granted, they will be expected to ebb and flow and we could easily see them drop right back down tomorrow which is why the guideline for going home is >200 for 2 days, but still, big milestone with it no longer stuck at 100!! 

More to come when we have it!! 💪💪💪

Mid-day update…

WBC: 1.5

Hemoglobin: 9.2

Platelets: 122

ANC: 300

We’re waiting on confirmation for a few things, but looks like we’re getting out of here possibly tomorrow! Since her numbers are within range, drs decided let’s do her bone marrow biopsy to end this round, IT chemo to start the next round, and place her new port before we go home! 

We are tentatively scheduled for tomorrow morning, barring any complications, and then we may be able to go home after!! 🎉🎉

In the meantime, we’ll keep chugging along and finding all our hidden ducks to put in our shopping cart! 🛒

More to come when we have it! 💪

Well…. 

They came to get Miss Octavia bright and early this morning since her counts were high enough. They proceeded with a bone marrow biopsy to finally end this round, a spinal tap to start the next round, and placed her new port. 

We’re back in the room recovering and getting her last dose of antibiotics. Once those are done running, she’ll have her PICC line taken out and we’ll be discharged to go home for a few days!! 

Then Monday we head back to the clinic to have counts checked and if her numbers are still meeting, we’ll be there all day to start the next round! 

More to come when we have it!!!! 💪💪💪

Anddddddd we’re outta there… home, here we come!! 💪

Someone is so happy to be home!!! 

Relaxing Saturday spent with big bro, hanging out watching Super Simple Songs!!! 

Dad is taking over this post

Happy Mothers Day to all the amazing mother's who follow this page!

A special shoutout to the greatest mom ever (I'm biased) Jennifer Schlegel. Those who have met her know how important her children are to her, but also how amazingly kind and loving she is to everyone she meets. There is no one i would rather take this journey with than Jen, throughout it all she has been amazing as she takes care of all her children (me included).

Happy Mothers day Jen! We all love you!

Update: Day 1 of the next round went well!!

WBC: 2.2

Hemoglobin: 8.7

Platelets: 245

ANC: 800

Stayed for a full day and we now start going to the clinic every single day, 5x/week for chemo pushes until this round is done at day 35. And we’ll be taking oral chemo meds as well during this time.

After this round, we wait for her to recover with her numbers, and then we repeat the same round. Then we’re in maintenance!!! We can slowly start seeing that glorious light at the end of the tunnel guys!!!!

More to come when we have it!!

Day 2 of this round also went well!

Nice quick visit, got home and ate some well deserved french fries

We are seeing she’s a bit crankier than normal, but still just as happy as a clam for the most part!!! We continue to be in such awe of how resilient kids are, she is such an inspiration to us all day in and day out!!

We did also finally get to take a bath tonight… so happy to be in the bath… not so happy about her port and sutures needing to be wrapped in plastic.

More to come after tomorrow’s visit!

Day 3

Definitely cranky and sensitive with these steroids she’s taking, but unfortunately that is to be expected and just a hurdle to get past during this round.

But guess who’s still in remission!!!! we got her bone marrow results that still show remission, so that’s definitely something to celebrate and be happy about!!

More to come when we have it!

Update time: day 4 !!!

WBC: 3.2

Hemoglobin: 8.1 

Platelets: 313

ANC: 2,580!!!!!!

This morning, miss trouble maker decided to take the end of her access tube off. She was pretty proud to show it to me. But since she took that off, we did end up getting a round of antibiotics today JUST to be on the safe side and prevent against any infections to that port since the line was then open and susceptible. 

Since her hemoglobin is so low, we are gunna pop down for a blood transfusion tomorrow after our chemo up in clinic. But let’s talk about how amazing her ANC is!!!!

We got home, and despite it being rainy and gloomy, she took a few minutes to walk around the yard a bit and was loving every minute of some fresh air!!

More to come tomorrow

Phew…. Made it through the first full week!!!

Got to run around outside last night for a bit, then went to clinic this morning to get our chemo and sit on the car we love. Then went down to get our blood transfusion and napped through the whole thing!

Now we get to enjoy some time at home for a few days before we head back up again Monday morning!

More to come when we have it!!!

“Shoes on… outside!”

She’s an outdoor kid for sure, I love it!!!

Day 8 of this round went well! Little longer than usual, but overall good!

WBC: 5.7

Hemoglobin: 12.8

Platelets: 267

ANC: 4,190!!!!!

Got her port stitches removed so we can finally take a bath without needing to have aqua guard on which will be glorious for her!!

Slept the whole ride home and enjoyed some waffles as soon as we got back. plus we got to hang out with our forever chemo neighbor, Meg's AML journey / Meghan's Mission

More to come when we have it!!

Day 9

Nice quick easy clinic visit this morning with a smooth chemo push.

Very cranky and very sleepy today, but the steroids she’s on are really kicking her butt and it’s all to be expected. Plus coupled with the weather getting warmer, it’s not surprising unfortunately.

However, we did get to enjoy some play time with big bro when we got home and get to enjoy some time outside which always makes her happy!!

More to come tomorrow!

Day 10

Another nice, quick chemo clinic visit today! Lots of time to get home and enjoy the gorgeous weather in our pretty strawberry dress!

Dad got a little mini pool to put on the back porch for her, so once shes up from her nap she’ll get to enjoy that for a little bit!! Be on the lookout for a video of how that goes!

More to come after tomorrow’s visit!

***disclaimer… everyone is fine!***

Unfortunately we did not get a chance to do Octavia’s pool today like we were hoping to do… mom got in a tiny car accident and it pushed us past her super happy timeframe we get after a nap.

But she at least got to go out and splash a little bit and then get wrapped in her awesome duck towel her aunt sent her!!!

We’ll try the pool again when we have another nice day!!

Update day 11

Today went well. Waited a little longer for her chemo to make it up to the floor, but other than that it was good!

WBC: 4.4

Hemoglobin: 11.2

Platelets: 106

Her numbers are starting to drop a little bit, but still in excellent ranges which is awesome, and the drop is normal and expected. We also finally got her oral chemo prescription figured out so we’ll start taking that tomorrow which is for 28 days.

More to come tomorrow!!

Day 12

Done with week 2!! Really quick easy day today to finish out the week, plus we got to see all our friends!!!

Got home and Octavia was relaxing on her little couch and doing some yoga apparently

We’re super happy to have 3 days off from driving to the clinic and enjoy some family time!

More to come over the weekend!!

Unfortunately not as relaxing as we hoped so far this weekend.

Miss Octavia has been absolutely exhausted and miserable today… she’s been waking up and within the hour asking to go back to sleep. The steroids are making her gain a lot of weight which is putting a lot of pressure on her stomach which is making her uncomfortable. But they’re also making her super hungry so she’s just always asking for more to eat, which then continues to add the weight on.

She also has a really bad diaper rash that just will not ease up, coupled with the chemo and steroids making her poop every 10 minutes basically… so just an evil circle all around that won’t give her a break to heal.

But positives… we’re still home, she doesn’t have a fever or any signs of sickness, we’re halfway done with this round, and we get to sleep in our own beds each night.

More to come when we have it!

Update… day 15

WBC: 6.9

Hemoglobin: 11.9

Platelets: 76

ANC: 5,370

We had a longer visit day today with multiple meds given. Octavia was in a relatively decent mood today. We start to taper her off her steroids this week so hopefully we start to see a happier version of her again.

We are still tirelessly working at getting rid of this poor kid’s diaper rash as well. Looking a little better, but still has a few open sores which are causing a lot of discomfort.

Tomorrow is her IT day… wish us luck being no food or drinks after midnight.

More to come tomorrow!

Update, day 16

Well… Octavia was up earlier than we hoped for this morning so her and Daddy passed the starvation time by walking around outside until it was time to leave.

Got to clinic, did her chemo, then went down for her procedure. She napped before it which was great for passing more starvation time!!

Needed a double dose of sedation meds, so was a lot more out of it when she woke up than usual. But, we made it through the day, and we’re home napping and recovering!

Tomorrow and Friday should just be normal clinic visits unless any blood or platelets are needed.

More to come when we have it!

Update, day 17

Had a nice clinic visit today - Octavia actually asked to play in the car which was a nice change in pace. Had a quick chemo push and got some hangout time with her Dr which is always welcomed and amazing!

WBC: 3.5

Hemoglobin: 8.6

Platelets: 30

ANC: 3,400

Looking like we may possibly need some blood tomorrow. Platelets are low, but not low enough for a transfusion… yet. We’ll probably need those next week.

We got home and immediately asked for her favorites… waffles and cheese!

More to come when we have it!!

Update!!

Today is…. Day 18

Today is…. End of week 3

Today is…. Octavia’s 100th day of chemo!

Lots to celebrate today besides being done with this week, and day 100… She finally had a night that she slept all the way through. We are only a few days away from being done with steroids. And we had no transfusions today!!

We have her clinic appt Monday morning and a transfusion appt scheduled right after. Were thinking she’ll need blood and platelets. If that’s true, that also means we get a break week!! Both a blessing and a curse.

Blessing because we get a few days to stay at home without driving to and from the clinic everyday. Curse because it means the chemo has plummeted her numbers and we can’t finish out her last week until they come up… who knows how long that could potentially take.

But…. One day at a time. We’ll take the glorious day and enjoy it while we can!!

More to come when we have it!!