Octavia unfortunately had a not so great turn of events last night. 

Seems she had a reaction to the Cytarabine which caused a fever. The fever spiked and she had a seizure. A code was called, everyone came in, and all was under control. When she came to, she had a few right-side deficits so they ordered a rapid head CT to rule out bleeding. CT did come back clean, but we are now on the schedule for an MRI in the morning to ensure no clots or leukemia. 

They pushed her last dose of chemo off for now, gave Tylenol to get the fever to break, giving broad range antibiotics for any infections, and starting her on an anti-seizure medication to cover all bases and prevent it from occurring again. 

Were trying to remain hopeful as after her CT she asked to go for a walk and was able to roam the halls for a bit which is a good sign. She’s also talking and eating which is a great sign too. 

More to come when we have any updates. Please keep all the love and positive thoughts flowing her way 💕

Update time! 

MRI came back good as well!! ♥️ She’s getting an EEG now just to triple check everything, but then we are going home for a few days!!! 

Since the chemo next week is the same, we’re going to remain on the anti-seizure medication. And once we get back Sunday, start round the clock Tylenol to prevent the fever/seizure combo. 

More updates to come! 💪

Well…. 

We decided to get all the bad things out of the way within 10 minutes of walking through the doors. 🤦🏼‍♀️ Octavia accidentally fell through one side of the bed and her head took all the impact. 

Luckily, her platelets are high enough that they don’t feel they need a scan and we can just monitor her closely. She cried immediately, didn’t lose consciousness, has been eating, drinking, talking, and playing all normally which are excellent signs! 

She already started dose one of the chemo, and got sleepy enough to go down for a little cat nap with the most amazing blanket made with love from Meg's Acute Myeloid Leukemia journey / Meghan's Mission who happens to be right next door this week!! 💕 

More to come as we have it! 💪

WE’RE HOME!!! 

We made it through her last round of inpatient!! With no issues besides our head bonk. Barring any complications moving forward, we should never have another sleepover again! 🎉 

We seriously could not have made it through this round of stays without the AMAZING nurses, doctors, and PCAs up on D7. We cannot thank each and every one of you enough for everything you have done, and what you continue to do for every patient day in and day out. The strength you all have and love you carry for each patient is incredible. It has been an absolute honor to have you all be a part in Octavia’s journey. And while we will NOT miss being up there, we will absolutely miss you all! 

Up next… outpatient treatments and tons of updates along the way!! For now, we enjoy being home and getting some air 💕 💪

Update time!!!  

Went to the clinic to have numbers ran this morning. Turns out Octavia’s platelets dropped pretty significantly… 140 to 15 in 4 days. Thresholds for a transfusion is 10, but since we’re at the weekend, we agreed to go get some platelets so they didn’t plummet over the weekend and have to worry about any tumbles she may take. 

Went down, took a little snooze while they transfused, and now we’re home dancing with our sunflower we got at clinic! 🌻 

More to come after Monday mornings bloodwork!! 💪

Update time!! 

Friday, platelets were at 15 and we decided to get a transfusion even though the normal threshold is <10. Well, thank goodness we did, because this morning she was even lower despite the transfusion… they were at 9 😳 

So we stayed and had another transfusion after our visit, and going back in a few days to have numbers checked again. Here’s to hoping we start recovering soon and creating those platelets herself!! 

But like always, despite everything she’s going through Miss Octavia is just a beam of sunshine, happiness, and joy! This was her while getting her transfusion hanging out watching Ms Rachel at Songs for Littles and playing with her baby☀️ 😊 🥰 

More to come after next visit!! 💪

Update!! 

No transfusion for us today!! 🎉 

Platelets held strong at 34, but can still drop since a platelet transfusion only really lasts for 3 days, and it’s only been 2 since we got them last. Hemoglobin was 8.8 and a blood transfusion threshold is normally <8 so we’re close for that. But we’ll take the small win and go home for the day!! 

Going up Friday morning and already have an appointment scheduled for blood and platelet transfusions right after our clinic visit. Better to have the appt and not need it, than need it and not have it. 😉 

Until then, we’ll enjoy being home. More updates to come as we have them! 💪 💕

Update!! 

Time for more platelets 🤷‍♀️ 

Numbers were at 15 again today. So while it wasn’t the worst, still teetering at that threshold and decided it would be smart to get more before the weekend. But just platelets, no blood! 🩸 

And another good note, we have our own private room to get it done and Octavia is in a great mood 💕 

Next appt Monday morning to check numbers. More updates to come when we have them!! 💪

Octavia’s new trick is trying to put anything she touches under her neck 🤣 

She found out today, that she can put TWO bouncy balls under there, and is pretty proud of herself too! 😂 😂

Update!!! 

This mornings check in was good today, nice quick visit with no transfusions!!! 🙌 

Next steps: Thursday is another count check, and a neurology follow up to see if we can take her off the anti seizure meds. And if counts are high enough, we’re scheduled for a bone marrow biopsy and possibly an IT next Monday. 

Until then, enjoying some gorgeous weather, and dancing on the covered back porch!! ☀️ 💕

Octavia look your dress has buttons on it!!!!

"Bubbins?"

Yes, sweet girl, bubbins 🥰

Update!! 

We were getting ready to post a nice easy update, but things changed🤷‍♀️ 

Went to the clinic this morning and had bloodwork. Womp, everything has dropped again. Ended up going down to get more platelets and came home. Since everything is so low, no bone marrow or IT on Monday and instead just going back up for more bloodwork. 

Got home, checked Miss Octavia’s temp and what do you know… fever. But she’s also teething (because why not throw that into the mix, right??) so maybe it’s just that. Call the dr and ask what we should do. 

Since she’s neutropenic, her numbers aren’t recovering, and she’s been teetering with a fever for a day, we are bringing her up to the ER to get checked out to make it’s nothing else’s is going on. 

Fingers crossed🤞 well keep you posted when we know more! 🥰

Well…. Guess we just wanted one more sleepover?? 😞 

Being admitted. Waiting for next steps and the room to be ready. 

Updates to come when we have them!! 💕

Unfortunately, it seems we will be here a while. 

Since Octavia has been neutropenic for a few weeks, continue to need transfusions, are ebbing and flowing with fever… we’re going to be camped out on D7. 

She now has to wait until her ANC hits >200 for 2 days in a row… last confirmed number.. 20 🤦🏼‍♀️ 

Long road, but we got this! 💕 💪

Final update for today…

We did a urinalysis earlier today and it came back abnormal so we ran another. Drs don’t seem concerned with anything with the results. 

Her respiratory panel came back negative. 

Her cultures are pending negative for another 4 days so no news with that. 

But something is up with her because her nose is more runny, her face is swollen on one side, she’s having a hard time eating, her temp has been ebbing and flowing teetering a fever, and she unfortunately has been miserable, cranky, and sensitive all day. 

All of you who know her will know how much this statement hits… she hasn’t smiled once all day, and she said no to going out for a walk on the floor 😞 

But we’re still remaining positive and taking it one step at a time. More to come when we have it! 💪

Alrighty everyone, sorry for the delay in updates but here they are for today… 

Octavia woke up this morning screaming. Clearly something was bothering her. Drs agreed since we ran cultures yesterday and she has no active fever to give a little Tylenol to help relieve the pain and swelling going on in her face. 

Few hours later, we get the cultures back that there is an infection in her abdomen, we just don’t know what yet. Panic mode and all the questions sink in. Drs put her on a stronger broad range antibiotic since the one she was on clearly isn’t helping. And then run more cultures to try and determine what strain we’re working with here. 

Cultures come back a few hours later and is determined she has Enterococcus Faecalis. It was explained that it wasn’t something she picked up, just that it’s a bacteria in her abdomen that unfortunately progressed into this since her body isn’t strong enough to fight anything off since her ANC dropped down to 0. 

Next steps were: get an abdominal ultrasound. If the pictures came back with no inflammation, we’re good to stay the course of antibiotics and monitor closely. If they came back with inflammation we move onto an abdominal CT and next steps. 

Luckily, we did get the preliminary results back and it seems the pictures were clear enough to show no inflammation, so best case!!! 

Unfortunately we are still dealing with a very uncomfortable, in pain, and miserable Octavia during all of this and only have a few spurts where her energy is higher and she wants to play and go for walks, but one day at a time and for now we seem pretty optimistic. 

Biggest downfall to all of this is the medicine she’s on causes bone marrow suppression which will plummet her numbers so we’re looking at potentially a longer stay here while she recovers. 🤷‍♀️ 

More to come when we have it!! 💕

Not many new updates for today. 

We are on round the clock oxy for her pain to keep it at bay for the day, so at least her pain is more tolerable and she’s not waking up screaming. 

The drs checked her over from head to toe to try and see if there were any other infection sites, or causes for her pain. We landed on the following…. She has the infection in her abdomen that she’s on strong antibiotics for, she is teething like crazy, she has what looks to be a possible double ear infection (antibiotics will help this too), and still possibly recovering from her mucositis that she had with the last chemo rounds. So poor little lady is definitely going through a lot right now. 

She did also have a platelet transfusion earlier today, and will most likely need blood in the next few days. Plus her ANC was still at 0 today. 

So what’s next? We wait for her next few cultures to come back for next steps. Right now, we’re looking at the next 3 cultures being the determining factor. If all 3 come back positive for this infection, we’re going to have to have her port removed. Reason for removing is because it would show the infection is “stuck” on her port and we need to remove it to help clear the infection from her body. If any come back negative, we’ll stay the course and let the antibiotics do their job. Fingers crossed it’s that one! 🤞 

On a good note, we are getting smiles, laughs, walks, play time, and Daddy snuggles. So the pain meds are definitely helping at least with her comfort 💕 

More to come when we have it! 💪

Mini morning update!! 

We have a small victory… Octavia slept through the night and woke up without screaming in pain!!! 💕 

Her platelets are still being difficult. Had a count of 11 yesterday, got platelets, and this morning they still dropped to 10 so we’ll be getting another round of those today. Still holding strong with her hemoglobin so no blood needed. But her ANC is still 0. 

As of right now, her culture is still pending with no growth which is an excellent sign… we either could be looking at our first negative or it’s still positive but took a lot longer to grow which shows the antibiotics are working to fight the infection she has!!! 

Still a long way to go, but we are certainly celebrating the tiny victories when they come up!! 🙌 and in the meantime, we’re going to play with stickers and see how many we can put on our neck 😆 

More to come when we have it!! 💪

Doctor came in a little while ago to chat… We are scheduling Octavia to have her port removed since the cultures are still positive. This will give her body a chance to heal quicker from the infection. 

We are aiming for procedure tomorrow but will know more soon. Once her port is out, they’ll place an arm IV for a few days until her infection is gone. Once it’s cleared from her body we’ll get a PICC line placed (the IV line placed on the inside of the upper arm) so she can still get her medicine and blood draws. Then once her numbers improve we’ll have another port placed. 

More to come when we have it! 💪

After a very long 18 hours of not eating, then having the procedure, then coming out of anesthesia…. The queen has finally has returned to her room!! 

Port has been taken out, and her IV was placed in her foot. 

Next steps, wait for the infection to clear and then go back under sedation to get a PICC line placed. We’re thinking possibly Friday if all goes well. 

More updates to come when we have them!! 💪