Future updates for everyone!!

Octavia was going to go to the clinic this coming Monday for blood work to make sure she didn’t need a transfusion, but change of plans… instead we are going up Wednesday morning for blood work and a bone marrow biopsy. We need to ensure she remains in remission prior to starting round 3. 🤞 

Ideally, as long as her numbers meet the threshold, we will be going up next Sunday to be admitted to start round 3. The next round consists of 4 weeks worth of inpatient treatment. 

Week 1: day 1 is a lumbar puncture and spinal chemo. Then 24 hours continuous chemo, followed by an injection at hour 42, 48, and 54. Possibly every 6 hours after that as needed. 

Week 2: identical to week 1.

Week 3: 3 hour long chemo IV every 12 hours, repeat 4 times. 

Week 4: identical to week 3, but at the end there is an additional 2-hour long IV 3 hours after treatment. 

So potentially around 3 days of treatment each week and then go home to rest in between each. However, with how strong the doses are, and depending how her body reacts to it, we could stay longer each week or even end up staying the whole month inpatient. 

More to come, like always!! 💪 💕

UPDATE TIME!! 

Octavia went up this morning, had bloodwork done and her bone marrow biopsy. Won’t get results from biopsy for a bit, but no one seems overly concerned with the expected results, so we’re thinking good news with remaining in remission, but more to come for that. 

As for her numbers…. All our D7 friends better get ready for us, because we got the all clear to start round 3 and are being admitted this Sunday!! As soon as a room, and hopefully her fancy bed, is available, we’ll get the call and head up to start week 1 of round 3!!! 🤞

Well, we made it through day 1… 

We had a nice welcome back greeting and she was beyond excited to say hi and run the halls like she own them!! 😂 

Had our lumbar puncture and spinal chemo this morning. Then started her 24 hour dose. Then got her oral chemo. Miss Octavia is being so strong and being a total rockstar of course, but it definitely hit her pretty hard after such a long break and she is absolutely exhausted. 😞 

More to come in the next few days! ❤️

First 24-hour dose completed! 💪 

Next up, doses given at hour 42, 48, and 54. They are constantly checking her urine to make sure her kidneys are at safe levels, and doing blood tests to check the toxicity levels as well. Once that final dose is given and we’re at the right toxicity level, we can be discharged. 

Outside of treatment, we are loving being back and getting and the love and attention from all our friends, we’re still strong enough to cruise the hallways on our own, and the best news is bone marrow results came back and are good so looks like little miss rockstar is still in remission!!!! 💪 🎊 

More to come - thank you everyone for the abundance of support and love throughout this difficult journey 💕

Update time! 

Looking promising for a discharge tonight or tomorrow morning. We need Octavia’s toxicity level to be .1 or lower to be discharged. Based on her last blood test, she went from .9 to .4, so we’re super close. With the additional dose of medicine she’s receiving to help kick it out, we should HOPEFULY get the numbers needed to get out of here for a few days! 

Regardless, we’re back on Sunday to repeat everything identically, but home for a few days sounds absolutely glorious! 😉 🏠 

More to come! 💪

Update!! 

Okay, but these numbers though!! 🤦🏼‍♀️ 

Her toxicity level needs to be .1 or lower to be discharged…. Yesterday we were at .4 and asked for a late night draw to see if we were clear….. .24 😣 But with all the medicine she should be good by the morning draw, right?? Well, this morning we decided we wanted to hang out just a TOUCHHHHHH longer and her number was .11 🙄 Another draw soon to see if we’re good to go home… fingers crossed it decides to finally cooperate! 🤞 

We also decided to play so rough and roll around like a crocodile with prey, that we pulled our needle out and needed to be recessed at midnight last night. 

But well worth the stay because she got the sweetest little gift from a few of our friends… look at the name 🥰 

More to come once we get her results back!!! 💪

Someone is going home for a few days!!!! 🎉 

Finally got the labs back and she was at .1 exactly. So we’re doing one more dose of meds and waiting to get de-accessed to go home for a few days! 🥰 

Back up on Sunday, and more updates to come 💪

Happy St. Patrick’s Day everyone!! 🍀 

And just like that, we’re admitted and back for week 2 of round 3. 

More updates to come as we progress through everything! 💪 💕

Pretty rough first night back unfortunately 😞 

Octavia developed a mouth sore from last week of treatment that has really been bothering her to the point of not sleeping the last 3 nights. IV Tylenol didn’t touch it, and she’s not old enough to use the magic mouthwash correctly. So between that and a port mishaps needing to be de-accessed and re-accessed again she was extremely uncomfortable and in pain so it was decided to give her a dose of morphine around 2am to help her get some sleep and relief. 

She just had her IT this morning and did well with that. So now we’re just waiting for her chemo to get hooked up, start the clock, monitor kidney function and toxicity level until we’re cleared to go home at that .1 level. 🤞 

More to come 💕

Late night updates! 

Octavia finished her 24-hour chemo around 1:30 today and had her blood drawn for toxicity levels. We continue to get blood draws and medicine to clear the chemo at hour 42, 48, and 54. Then every 6 hours as needed until we hit that golden <.1 threshold. Our urine checks have also all been in the clear so kidneys look great.

She has been very sleepy and easily worn down this time around and doesn’t want to go for many walks. 😔 and the other downside is that she did develop another mouth sore on the other side of her mouth… but she seems to be doing better with the sensitivity of them and is eating a touch better and less cranky / bothered by them. 

And of course she is still being as strong as ever, laughing, making friends, and having a blast in our room! Plus we got a surprise today… we got a mega duck from one of our friends and we’re obsessed!! 😍 🦆 

More to come tomorrow once we know more! 💪

Number update for the trend / comparison of toxicity levels from last week to this week. Reminder, we need to be at .1 or lower to get discharged:

Last week         This week

First: 95                  84 

Second: .9              1.6

Third: .4                  1.19 

Fourth: .24              .48

Fifth: .11                   .22

Sixth: .1                    .17

I’ll continue to come back and update each time we get blood draw results for those interested in seeing the trends! 😉

Alrighty…. Update time! 

We’ve been very lucky and beyond grateful that all our updates have been positive and good things. Unfortunately, that cycle ends today with a not so happy update. 😞 

Octavia still hasn’t cleared her toxicity level in order to be discharged for a few days. She needed to be at .1 or lower, and this morning she was still at .17. Instead, she caught an infection and more mouth sores from treatment. So they’re doing a respiratory panel to rule any of that out and then possibly blood cultures for any viruses. Unfortunately it also seems she’s gotten more mouth sores and they’ve gotten worse as well. 

Everyone following her page knows by now that Miss Octavia loves running around playing, exploring,  and saying hi to everyone… she is “The Mayor” after all. 😉 unfortunately the last 3 days, she has not wanted to get out bed. She’s in a lot of pain, not eating or drinking, doesn’t want to move or go on walks even in her wagon, and just wants to sleep when she can. She’s lost some weight due to everything as well, but luckily not a concern as of yet. It’s heartbreaking to see any child go through what she is experiencing, but when you are used to seeing such a strong independent little fighter who hasn’t let anything bring her down yet, and there’s nothing you can do to take her pain away…. It’s absolutely the worst feeling a parent can face. 

So those are the sad updates, now let’s focus on the plan: they’re pushing her fluids more rapidly to try and clear the toxicity from her system. Monitoring her for viral/bacterial infections and treating them as we can if they happen. She’s getting medication, magic mouthwash, and morphine for her mouth sores. Staying inpatient over the weekend and evaluating if we can start the Cytarabine round on Monday or if we need to delay for her numbers or mouth. 

As heartbreaking and helpless as we have felt the last few days, we’re still very optimistic for the plan. Plus having an amazing team here on D7 helps tremendously, knowing that no matter who walks through her door they’re there to help us through every step of the way. 💕

Thank you all for your support, send all the good juju you can muster for these next few weeks. More updates to come as we have them! 💪

It’s happening!!! 🎊 

Octavia’s morning bloodwork was FINALLY at .09! Her mouth sores are still there but more manageable thankfully. We were supposed to be admitted tonight and start round 3 tomorrow morning, but Dr decided to give her the week off to recover so we’re being discharged to go home today! 

We’ll go back to the clinic Thursday or Friday to have her counts checked to make sure she is within range to be admitted next Sunday.

More to come!! 💪

You never realize just how amazing, accepting, and loving the cancer family is until you are a part of it. No matter the type you have or age you are, you are loved deeply by those around you battling something similar and they are always rooting for you personally. 

Octavia has only been fighting her battle for 5 months now, and within those 5 months we have met some truly inspirational people, Liv included. Despite the age difference, Liv always said hi to Octavia, asked to play when we were in the clinic, and followed her Facebook page. 

While we may not have known her long, Liv was a beautiful person inside and out. She unfortunately lost her battle to AML last night and our hearts are with her family and friends. 

We will continue to fight our battle day in and day out with Liv, and so many others we have met, in mind. You may be gone, but you will never be forgotten. Rest easy, beautiful girl ♥️ 

#CancerSucks #LiveLikeLiv #OctaviaStrong

Update time!

Went to the clinic this morning for bloodwork. We got the all clear to start week 3, so we will be heading back up for the next week of inpatient treatment on Easter. 

On a good note, Octavia is feeling a lot better. She eating and drinking, playing on her dog, and has learned to climb on her couch and roll over the top onto her fuzzy bed 😂 

More to come! 💪

Happy early Easter everyone!! 🐣 

We celebrated our Easter today so the kids were together since we’re being admitting tomorrow. Apparently Octavia was feeling very photogenic today and in such a good mood from getting some fresh air! ☀️ 

Mini photo shoot to bring you all some joy 🥰

All admitted and ready to start treatment in the morning. 

There was a super sweet Easter basket waiting for us when we got in our room, and had the cutest bunny ears that we had to put on to go say hi to all our night shift friends! 🐰 

Happy Easter y’all! More to come once we start treatment!! 💪 💕