Update for today… day 22!

Octavia’s numbers surprisingly were still high enough after the weekend to NOT need blood or platelet transfusions!!

Dr was debating giving her a week off to recover since her platelets were borderline, and her poor diaper rash is still super bad (poor thing) but we decided to push through and get her last week over with, so we stayed for chemo!

That means we only have 4 more days of daily chemo visits left in this round!! And then the oral chemo daily as well stil for another 3 weeks.

We will most likely need both blood and platelets by the end of this week since we decided to push forward instead of a break.

But on a good note, we are very slowly starting to see a more happy and playful version of Octavia now that we are weaning off steroids…. We only have one more dose tonight and then they’re done!!!!

More to come when we have it!!

Day 23

Nice quick visit this morning and in a good laughing mood… starting to turn that steroid corner a bit with her mood thankfully!

Dad built her car last night and she’s been enjoying going in it and being pushed around “crashing” into the back door and then wanted nothing more than to drive up and down the halls this morning at clinic in their car before we got hooked up to chemo.

More to come when we have it!!

Day 24

While we have been seeing some improvement in mood, we unfortunately also got a new symptom to kick us down a little bit…. Mouth sores. Seems when the steroids came off, the mouth sores came in.

We noticed a little blood in her mouth yesterday but weren’t sure if it was from sores or maybe just bit her cheek, but we got confirmation today at clinic that she does have a few all over which are extremely painful. Dr prescribed some pain meds and magic mouthwash to hopefully keep the pain at a minimum. And of course we are STILL battling a diaper rash on top of it all.

On the adorable note… Miss Octavia is addicted to her new car, look at her cheesing while she’s in there!

More to come when we have it!

Late update today…. Day 25

Bit of a rough one today unfortunately.

WBC: .7

Hemoglobin: 8.4

Platelets: 12

ANC: 260

So numbers dropped pretty decently, which we expected. We did go down to get a round of platelets transfused, which she slept through, and we’re thinking probably Monday for a blood transfusion.

Poor Octavia still has pretty bad mouth sores, diaper rash (but is a touch better!), and her port site is very, VERY sensitive today. Most likely just from the number drops and having her accessed every day with the adhesives going on and off. So she’s pretty cranky and sensitive today minus a few good moments here and there.

Definitely looking forward to tomorrow being her last clinic chemo day in this round and to get a break from that for a little bit. Still doing oral chemo for another two weeks and waiting to get the next steps & al clear for the next round.

More to come tomorrow!!

Day 26

Happy to say that today has been a MUCH better day! Octavia got a really good night sleep finally, and has been mostly smiles and laughing all day.

Today was the last chemo clinic visit of this round and it was quick and fun! She was smiling, laughing, and running up and down the halls again…. So happy to see this version of her again!!

We go back up on Monday to get counts checked. There are three different outcomes depending on numbers…

1- her numbers are low and we need transfusions (we anticipate this one)

2- her numbers are high enough to not need transfusions, but not high enough to start the next round

3- she surprises everyone and her numbers are high enough to start the next round

We shall see, but for now… WEEKEND!!!!

More to come when we have it!

Well…. Yesterday, last night, and this morning did NOT turn out the way we expected.

Octavia woke up not feeling herself. Very lethargic, whiney, not hungry, and very warm but not to fever level. Okay, well we know the drill… her numbers are plummeting so we watch for any of the red flags and go up after a certain threshold.

As the day progressed, we really flirted the line of that fever, still not really eating, no playing, and going back to sleep like 20 minutes after getting up. So we call the dr and we decide keep monitoring.

This goes on almost all day. Around dinner we call back.. her fever right after she woke up was showing at 101… but, she was bundled in blankets so let’s give her some time to cool down after that. 15 minutes go by, down to 99.6 so we decide to wait again.

Wakes up from her nap, we go to check and it’s 102.2… but again, right after blanket bundle so we wait again to see if it drop which it does!!! We decide to let her lay on her couch and no more than 5 minutes later she’s reading 100.7 so we call again.

It was decided to finish packing and head to the ER at 11 PM knowing that when we get there we’re getting admitted since neutropenic fevers always are to be monitored.

So, get to the ER and go in for vitals…. Turns out she had a 103.8 fever!!!!!

So we get a room, get her port accessed, draw all her normal blood tests, get cultures, respiratory panel and to be safe they gave her an X-ray of her chest and stomach to make sure it’s all clear of infections since she hasn’t been going to be bathroom normally all day, and her breathing was more shallow and rapid than usual despite lungs sounding good. Then we got the all clear to move on up to inpatient.

We got our room set up, kind of. Hooked up to blood and platelet transfusions, and are just now falling asleep finally at 5:30 AM.

It’s been a night

Keep you updated when we have more!

Update for today…

Octavia feels like crap. She has really only sat up like 3 times today and has needed help to do so each time.

Her fever has come back multiple times throughout the day. She’s on broad range antibiotics, and then a stronger antibiotic since her culture came back positive for staph infection. Still waiting on the results for the specific strain and next steps if anything needs to change for our course of treatment.

She got blood and platelet transfusions earlier today, had her numbers ran again in the afternoon to see where she was:

WBC: .2

Hemoglobin: 8.1

Platelets: 34

ANC: last calculated check was 30

We’re most likely looking at more blood and platelets needed, but we’ll see what her morning numbers look like.

So we will continue to stay inpatient, get treatment for the infection, pray we don’t need to take her port out again, and wait for her numbers to recover. We’ll be inpatient until her ANC is over 200 for 2 days in a row, just like our last stay.

More to come when we have it

Update for today…

Dr team and the infectious disease Dr came to see us. The strain came back as Staphylococcus epidermidis which is the “best” one to have, not a panic one. And she’s on the right antibiotics to help treat it, no changes needed.

The fact that her fever hasn’t come back is a good sign that it’s already working. We’re waiting for the cultures to come back negative. As soon as it’s negative we start the 10-14 day clock for antibiotics until she can come off those.

And keeping an eye on those cultures for the same thing as last time… this is technically a “sticky” infection. If the cultures keep coming back positive, it shows it might have reached her port and we’ll need to have that removed again, but for now we’re not concerned that it needs to come out right now.

The wound care Dr also came around to take a look at her diaper rash since we’ve been dealing with that for over a month now and anticipate it getting worse from the combo of the mucositis sores going down her GI tract and now being on the antibiotics. He wants us to start doing an oat paste, letting that dry, clearing it off, then using maalox, and then a fungal powder mixed in with her normal cream we use. hopefully we start to see that help clear everything out!

They also prescribed around the clock oxycodone again because she has just been screaming in pain unfortunately.

More to come when we have it

Ugly truth post…

We try so hard to remain positive, see the light, see the bright side,  and post the cute pictures and videos only. But this truthfully sucks.

Octavia’s cultures luckily have been negative so far which does show the antibiotics are working for the infection. So that’s a win.

But this poor girl is in an immense amount of pain that just won’t give in. drs prescribed around the clock oxycodone for a day to help ease the pain with the thought we’d be okay to switch back to Tylenol today (this was the route of attack last time and it worked.) but unfortunately, today was no better and instead of removing the Oxy, we upped it to an all day around the clock of morphine to help ease her pain. And then added in Tylenol as well to help her get some sleep.

We assumed that all the pain she’s been going through was caused by the sores traveling through her GI tract. Unfortunately, she still seems to be in quite a bit of pain despite the meds. So they are going to look at possibly doing an abdominal ultrasound tomorrow if the pain does not subside any to see if we’re dealing with anything else which is causing the pain.

I hate seeing her this way. Constantly crying and screaming. Even to the point of moaning in pain while she sleeps. I just want to take her pain away and move past this. This sucks!

More to come tomorrow when we have it.

Update finally…

Didn’t get around to updating yesterday since there wasn’t much more to update on. Still lots of pain, around the clock morphine, did the ultrasound late Wednesday night which showed clear results, no concerns.

Last night she had platelets transfused. Then she had a hand IV placed by the STAT team in order to get an IVIG transfusion overnight. Then this morning she had a blood transfusion.

We were expecting with all of that to see a slightly perkier version, but unfortunately still woke up screaming. So decided to have another day of morphine.

Still complaining that everything hurts, still grabbing her stomach and arching her back, etc. Finally started pooping again now that she got a few doses of meds to help. But also still screaming when she gets changed, despite our new wound method kicking the diaper rash completely out… finally!!!

We did have a small window where she played with her duck stickers and stuck them all on her head and pretended to put them on every finger as “bandaids”, so that was fun!

Then around dinner, daddy came up after work with new toys and we ever so slowly started coming out of our shell. She started moving to play in her crib instead of laying/sitting all day, and we went for a walk in our duck-mobile.

We’re really hopeful that we continue to see the slight improvements tomorrow when we taper her off the morphine and take it from there. On a good note, her cultures are still negative for any blood infection so that’s great! And today was day 4/10 for the antibiotics.

More to come tomorrow

Update time!

We slowly seem to be turning a corner!!!

Octavia went all day with no pain meds and was in a slightly better mood! We even left the room a few times to go on a few walks in a car, andddddddd we took a few wobbly steps while holding dad’s hand!

Might be minor, but it’s improvement nonetheless. We will take any kind of improvement we can get right now!!

She’s on day 5/10 for the antibiotic, and now we just continue to monitor for any symptoms and wait for her ANC to come back up to 200+ for two days before we can go home!!

Road to recovery, here we come!!

Update…

*sigh* ebbing and flowing with the good days and not so good days.

Yesterday, they decided to test her for c diff because of her diapers being so loose and frequent, knowing that such high dose antibiotics can cause it. So her next diaper they sent for testing.

But unfortunately that testing didn’t go through because it wasn’t “liquidy enough” to test for it and unfortunately we wouldn’t be able to get that due to her wearing a diaper, or contaminating it in another collection method. But I think we feel pretty confident saying it’s not that which is good at least.

We had a bit of a rough night overall, but woke up and were so hopeful… she was happy and smiling and playing for a bit. And her numbers are better:

WBC: .4

Hemoglobin: 10.4

Platelets: 31

ANC: 200!

But we quickly went back to being in pain from what we think is a possible combo deal…. mucositis, antibiotic stomach, basically pooping out nothing but mucous so it’s burning her, and maybe even some residual pain from coming off the steroids. And she hasn’t eaten a single bite of anything or drank anything in 3 days

Tried giving her some zofran to help with any nausea, but unfortunately that didn’t help get her appetite back. So we have to monitor that because the next step would be a feeding tube if it goes long enough with no improvements.

She was due for a needle change today so they de-accessed her and she was able to run free for a few hours which was glorious. We took a walk until she got tired, then ran around in her car for a bit, and then played with the train table which she loved!! But then we had to go back to get accessed.

Unfortunately the first attempt didn’t take despite doing it perfectly. So they had to do it a second time for her to flush and get blood return. But then the sticker was too tight since her skin is so sensitive so they had to remove that and put another one on.

Got a dose of Tylenol to help with any discomfort, fell asleep, woke up screaming, got a dose of morphine, and now we’re sleeping again.

Fingers crossed it’s a better night, and that hopefully we start to turn a corner with eating and pain moving forward tomorrow.

Late update for today…

We swung in the right direction today and it was a MUCH better day!!

Octavia woke up happy and playful this morning and from her nap. She was unhooked a few times throughout the day and took full advantage of the freedom from her pole to run around the whole floor and meander into camp to play with the train table she loves so much!

Her ANC was 230 today, so we hit that two day threshold of 200+! She alsoooooo ate two full pouches today, so it seems we’re moving in the right direction!! So much so, that as long as it continues with eating, less pain, and continuing to trend back to her old self… it looks promising to be discharged on Thursday afternoon!

Praying we continue to trend in the right direction the next two days

We’re home!!!!!

Octavia is feeling a lot better overall, and is very happy to be home.

Only thing we’re still watching/dealing with, is that that can’t put any weight on her right leg. They did an X-ray the other day which showed no concerns though which is good.

Were hoping it’s just some muscle/joint pain that will work itself out in a few days, but we’ll keep a close eye on it and we have a script for outpatient physical therapy if it continues.

More to come when we have it!!

Update time…

Octavia had a blah day yesterday. Still a lot of pain in her leg and not walking, and very tired. She woke up, two hours later went down for a nap and slept for 6.5 hours!!

But then she adorably surprised us when we were playing in her room. She asked for her shoes on. Once they were on she stood on her own, put her arms up and said “I did it!” And then she took a few unassisted steps to Mom and on the way said “I’m walking, I’m walking!”

So that was an excellent surprise and she’s been walking and back to her old self since! We had a very good day today!! The only negative we’re dealing with… again… is a nasty diaper rash. No sores this time, but it almost looks like a burn

Other than that, she’s been playing and having fun and acting so silly. Look at her with her cute glasses she put on al by herself!!

More to come - we have a clinic follow up visit Monday for blood counts and possibly a transfusion or two.

Octavia had a pretty rough night last night, up pretty much all night. And unfortunately we had to be up early to head to clinic.

But once we got there it was a great visit!!

Had her numbers checked:

WBC: 1.2

Hemoglobin: 10.7

Platelets: 53

ANC: 600

Surprisingly, we needed no blood or platelets! Her numbers are high enough to start the next round, but Dr said they want to give her a break to recover from all the crap she’s been going through. So we don’t have to go back to clinic until next Monday!!!

Hooray for a whole week off to just stay home, relax, snuggle, play, and rest!

A week off is just what we needed!!

Octavia is slowly starting to eat more, play more, and is just overall a lot happier. We’re definitely in a reversed sleep cycle right now, so mom and dad are tired to say the least being up all night… but we’re home and she’s recovering and that’s all we care about!

Diaper rash is still there, but getting a little better, so we’ll take that small win.

Eating is unfortunately still a little iffy. Not eating nearly as much as she was, and only pouches. But we did get a small victory and she ate a full waffle today!!

And she’s just as cute as can be when she asks for a blanket to get wrapped into like a little adorable burrito.

More to come, but we’re definitely enjoying a taste of uninterrupted, and much needed, home time