1am update - her labs show high potassium and other things. Basically the potential signs of something called tumor lysis. For lack of a better term, as the cancer cells die they release toxins.  It's the reason for the iv and lots of fluid to try to flush it out.  They woke her to give her meds, but not concerned enough to run more labs until the morning. Will know more when the Dr comes by in the am.

Morning update: she has a pretty bad diaper rash. The Dr said it's not unusual and has a plan to treat it. Her labs overall are good. Got the official test result for the spinal and it was negative!!. The Dr talked about the tumor lysis syndrome. She does not have it fully but there are some things she is stepping up some of the proactive stuff for it. She said the "zone" of concern is now until Monday for that.  Last test for the genetic marker is still a while off. She had a rough night with all the wakeup and rash but she's better this morning

Update from the dr.... 

Platelets are low so they are doing a transfusion this morning. All other blood numbers look fantastic. 

She lost 26 grams of weight as of this morning, but the team and nephrology said chances are her "weight" when she came in wasn't accurate because of all the tumor cells and inflamed liver and spleen so they aren't worried about the weight loss but will continue to monitor it. 

Cardiology looked over the scans and they aren't concerned. 

Endocrinology looked at her for her thyroid and they aren't concerned but will monitor her thyroid levels in the blood tests. 

Nephrology is monitoring closely for the possibility of dialysis within the next few days. However numbers are good today.

Her BP and HR have leveled out and they are thinking it has to do with the weight gain from everything and by leveling out and losing all the fluid weight and getting the pressure off everything is why everything is starting to level out. 

Because of the medication for tumor lysos. She will NOT get chemo tomorrow but will Saturday morning because if they did it Friday it would be overnight which they prefer not to. So about 12 hour delay. 

Her diaper rash got worse and a few sores are there so we have a 3 layer treatment thing with her, some meds/ cream/ and Vaseline. 

She just got loaded up with meds in prep for the transfusion so hopefully a decent nap is in store.

Nighttime update: nothing new so today to report, we got to visit a few other parts of the floor because her nurse wanted everyone to meet her "new best friend" so it was like a little parade during our time we didn't have to be hooked up and played on the play mat for a bit. Had a bath that required 9000000 bandages to protect our Port but enjoyed it lol. So here is to alot more days like today!

Morning/ afternoon update.  We had another platelet transfusion, they were a little below the goal. We will be getting some preventative medicine tonight in prep for chemo which starts at 10am tomorrow.  Numbers for tumor lysis look good from this morning. Diaper rash is almost gone yay!!! 

Nighttime update: today was a good relaxing day, we played, napped and overall a had a good day. Lots of meds in prep for tomorrow but no issues with any of them.  Our blood work showed some of the potassium up slightly so blood work now every 6 hours instead of 12 to just be cautious. Diaper rash is almost gone so the treatment worked super well ( from open sores to almost like it didn't happen in one day) because we are so prone to it though we are going with the cath. Tomorrow however will reevaluate throughout the next few weeks. We met one of the outpatient people today and will be taking a tour of that floor in preparation for outpatient treatment in December  and after and meeting everyone else there sometime next week. We start chemo at 10 tomorrow and the Dr said it will be the milder chemo compared to in the next few weeks so we expect no issues. I think she said 2 or 3 tomorrow but I can't remember how many treatments. 

Will probably have nothing major in the am until after we start chemo!

Morning update: got the catheter in at 930, it was absolutely the worst to watch but it's done now. We had lots of treats after. Her blood counts looked good so no transfusion today so that's one less thing. Getting a bunch of anti nausea meds now and then getting the chemo. Also bubbles. To make us feel better 

Mid-day update. Chemo just finished, did 3 rounds of it with different ones, plus some other meds in between. She did good and slept through about half of it, just woke up and is eating now but still sleepy.

Nighttime update: chemo, meds, extra blood tests, catheter, and being poked and prodded. We still found a way to go see our friends.

Today's update: This is the first update but day 12 of our hospital stay so I will not only update on today but kind of where we are the past few days.

Today is day 2 of active chemo after the first week of steroid treatment. We also had another platlet transfusion due to low platelets (we were at 50+ and dropped to about 19 by the morning).

We are on day two of the catheter but we have no rashes and only had to get the line fixed once today. We also continue to take our precaution medications for both tumor lysis and infection. Due to being on the catheter and chemo starting we went from 22 hours hooked to the iv line to 24 so no freedom right now but mom and dad are chasing her around in her walker with the iv pole so she can visit her nurse and dr friends and get some exercise. We got new blocks to play with in our crib and took a good nap today and have been overall in good spirits today. Blood work is being done every 6 hours currently since a few of the numbers are fluctuating for tumor lysis.

More updates tomorrow hopefully an uneventful sleep filled night! 

For those wanting to learn more here is a good article on her diagnosis. We are still awaiting the gene test to determine the final part.

https://together.stjude.org/en-us/about-pediatric-cancer/types/leukemia/infant-acute-lymphoblastic-leukemia-all.html#:~:text=Key%20points%20about%20infant%20ALL,ALL%20in%20infants%20is%20chemotherapy. 

Day 3 of chemo is complete,, and it was a relatively uneventful day thankfully. Platelet count came back in range, so she didn’t need a transfusion, all other blood numbers are within range and looking positive so no tumor lysis prevention at this moment either. She unfortunately continues to not have much of an appetite, but that is to be expected with the chemo since it is such an aggressive treatment plan for her. But she is managing to get enough nutrients in her to not raise any red flags

We even went for a short little walk in our walker although our legs got tired quick.

More to come tomorrow! 

She had a very sleepy day today. Her labs all look great, she had chemo, and then has been very sleepy afterwards so she’s been napping in her fancy new bed. We needed to get it changed out due to her being so active in the metal bar crib and putting herself at risk, so needed to get a fancy Posey bed to play in… and is super happy that it’s more room to play in! She took a few strolls around the halls in her walker, but her little legs didn’t last very long. She also needed a bandage change on her port and was NOT a fan of that at all. But, despite it all, she has still had such an infectious personality and winning all the nurses and doctors over! More to come tomorrow, and hopefully bone marrow biopsy results to go over to find out if she has the gene or not which will determine if our treatment plan will change moving forward! 

BIG UPDATE!!!

OMG OMG.

Drs just left…. Her bone marrow results finally came back and is NEGATIVE for the mutation!!!!! which means the best prognosis possible! It means all outpatient treatments will be less intense chemo, possibly not as frequent, not as aggressive, and as long as her bone marrow is clear after this month it means she has an over 90% recovery rate !!!!! ‍

Nothing changes currently we still have to get through the next few weeks and the next big step will be seeing if she is in remission at the end, but HORRAY!!! 

We are able to remove 1 medication which is to help her white blood cells. We are moving to blood work once a day since things have stabilized. Tomorrow at 10am we have the next surgery procedure so no eating or drinking after 4am tonight. In preparation for the procedure she will get a platelets transfusion tonight to make sure the numbers are high, tomorrow they will check her numbers and have platelets on standby for possibly during the procedure. The will be checking her spinal fluid numbers to make sure there is still no cancer cells in her spine/cranial and administrating her second dose of spinal chemotherapy. So a big busy day tomorrow. Today we did our normal chemo and we are napping now. Got some family visiting today so very excited for that. ❤️ 

Today was a rough day.

Hey quick update on our morning.

We woke up to a broken port, so we had have them clamp that, which was awful. They had to run a new line in her arm again, also awful. Now we are waiting on surgery to come up and determine if they are able to repair the port under sedation or if they need to do the whole procedure again under general and completey remove the port and put another one in. They have platelets on order now and we were already on a do not eat/drink order so there going to do it all today. Oh also we feel asleep at like 5am so here we go . She is a little trooper I'll keep you updated as we know more.

We are out of the procedures. It went well, we are passed out on mom right now. As always she is the toughest fighter. The surgeon gave her the nickname wiggles after they had to re-sedate because she kept kicking and trying to wake up. Now we wait for the results hopefully sometime Monday, and the surgeons and her oncologists will discuss what port is best for her to get a replacement in 2 weeks, assuming this one does not break again, which we were warned was a real possibility.

Final update for the night… they managed to repair her port today, but have agreed that it won’t last long and will break again so they will be bringing her back to the OR possibly this weekend to put the other port in under her skin.

But one good piece of information to end the day… her rapid spinal fluid results were negative for cancer cells. So we’ll take the win there for sure after the day from hell. Having a very tough time tonight but got some meds incoming so hopefully getting some rest soon. 

Not much to update on today,pretty good day overall, had visitors who we played with and now we are sleeping. it was a good day, an amazing day compared to yesterday.

Our port is working and our bloodwork looks good. We had 2 chemo treatments in the morning but all went well.

We have a tentative surgery date of Tuesday to get a new port. More to come on that as we get closer.

Very sleepy and relaxed now. 

Update for today: All numbers are good today, still scheduled for surgury on Tuesday unless anything changes but we will get definitive day/time tomorrow. We also got some info about end of treatment and what's next. Always subject to change but here is what it looks like

11/25 - last day of chemo and bone marrow test.

At this point they will do some other tests and determine if her numbers are safe to go home or stay in for the "week of rest"

Between 11/26 and 12/01 will be waiting for results of the biopsy. And then this decides the next steps and actions.

If we are in remission then we would begin the second part of treatment which we will get a roadmap of tomorrow, but will be a mix of inpatient and outpatient for a few months I believe.

If we are not in remission we go right back to inpatient with additional treatment including chemo, possibly radiation, possibly transplant.

It's alot and we won't know what path until we get there, and all hoping for the best path forward but wanted to share the info we got. More to come tomorrow from that perspective.

Nighttimeish update. We had a good happy day overall, playing with Mema!! We do seem to have a decreased appetite so they are checking her intake frequently, she lost about a lb in weight since the last "normal" mark. She ate good this morning/afternoon but refusing to eat again, tomorrow if her weight drops again she will be seeing a dietician and possibly on something to increase appetite. Right now they gave her a anti nausea med in case that's why so we shall see. We most likely will have a red blood transfusion tomorrow because our counts have been trending down. Neither of those things are out of the ordinary and part of normal treatment. Her rashes continue to be good, they pop up once in awhile but don't last long. Her toenails are extremely brittle and kind of falling off, but we are keeping them clean and medicated and they don't seem to bother her. Here is to a good night sleep and some hungryness tonight!! 

Some big updates today. Surgury still on for tomorrow we will be getting a time later today. We will be getting a blood transfusion shortly (red blood cells) and a platelet transfusion super early am (prob 3am) in prep for surgury. Dr is working on what the possible road maps are for after this round is complete and we will have that at some point. The good news... our cath is out!!!!!! The Dr's have determined that the balance has shifted based on the current chemo to thr risk of infection is greater than the risk of the dermitis. So we have to continue with the multiple creams and change her every hour or so to be careful but yay!!! The other big news is we are reducing the fluids we are on from an IV perspective!!! So we will be hooked up from morning to early afternoon today. Then back on overnight and tomorrow. Then starting Wednesday we should only need to be hooked up for our meds and chemo, so we will be hooked up it looks like from prob 6am to around mid afternoon, then FREEDOM. Obviously everything will continue to be monitored and we could always change course back but for now... excitement!

Nighttime update. Day went well lots of napping and relaxing with the blood infusion. We ran around a little with freedom, but sleepy. We have no eating after 1am and no drinking after 5am in prep for surgery which will be between 8 and 10 sometime tomorrow. We get antibiotics and platelet transfusion at 1am in prep so possibly up then lol but for now sleeping. Will update before and after surgury tomorrow 

Octavia Update - busy and also not busy day today lol. We woke up at 8 ready for surgery but we got pushed back because we had to wait for our blood tests. So big hungry! Finally got the call and headed down, anesthesia is always terrifying holding your baby and today was no different . Jen was holding her when she got a strong paralytic mid cry, but the doctors took great care of her and surgery went well, port is in and the old one was removed. It's working great. We got chemo and our other meds after recovery and slept most of the day, we did get a visit from mema and papa and got to sleep on papa's lap for a bit. We got a tiny burst of energy around 730 and went for a walk but only made our rounds once before we got tired again. Getting sleepy now and fingers crossed we get a good night rest, we have nothing but vitals from now until 6am when we get more meds.

We are still very scared of our port and don't like people going near it but it's new and we will get there!!

We ended the night with a celebration of a chocolate munchkin from dunkin. 

For anyone interested in the techy side... this is the port she got today, it will be with her for about 3 years, it's hidden beneath the skin and connected to an artery so the meds can be injected efficiently and quickly. After a few days she will be able to do anything with it, bath, swim, run around. It is accesed similar to a regular iv except instead of finding a vein they just put the needle right into the port and it can stay "connected" for up to a week. It's only connected when she is getting back to back treatment like now or times in the future, when she's not it's like its not even there, nothing hangs like the previous one so very little risk of breakage like that one.

Port Link

Morning! Not much to update, we are very sleepy today? Slept all night from around 10 to 6am. Then napped from around 8 until noon, and all we seem to want to do now is nap and snuggle. Blood work looks good, we are getting meds and chemo now. Only thing today the Dr's are keeping an eye on is her shivering, she has no fever and the heat is cranked but she still seems to be shivering a bit so more to come on that possibly.

Hey, so some updates on next steps. nothing to specific right now because we are still in round 1 but, here goes. So part 1 treatment ends on day 29 ( 11/26) which is followed by test results and resting, wether this is inpatient or at home or a mix will be determined sometime during days 29 and 43. Part 2 starts on day 44, which would be 12/10. The Dr was blunt and said we will be inpatient most of December. So looking af the current road map we are looking at being inpatient from that day (12/09 or 12/10) until atleast 12/20. Then a possible break until 12/23. Again depending on our blood counts. Then inpatient again it looks like 12/24 until 1/2. .... as we get closer we will get exact dates although they are subject to change as they could move treatment up or delay based on the tests. But from the conversation with the Dr. This is kind of the minimum amount of additional inpatient, and could be just straight through or broken up a bit, but given the intensity of the treatment it would most likely be more than not inpatient. Then after that it looks like a break between then and mid to late January, then the roughest news. Because she is considered high risk because of it being infant vs child, we basically repeat the same 2 phases a second time. so Jen and I have alot to figure out of the next couple weeks because this brings us to around March being inpatient prob about 50-75% of the time. And obviously the way we are doing it right now is not going to work for that whole time. 

Not much in the way of updates from the drs today. Everything is on track as is. I did clarify the going home point at the end of this treatment, while there are a number of tests the biggest is her neutrophils. Right now her total neutrophil count is 100, which is why she is on daily antibiotics and antifungal because that's what fights those off. Chemo is what causes those to go low, as well as the leukemia itself. It takes time for them to recover after treatment anything from a few days or a few weeks from what I read. In order for her to be released this number needs Tobe either above 500 during a test, or above 200 and rising 2-3 consecutive days. After that there is still a close watch of fever. So while treatment ends on 11/25 we can't leave until those numbers come up which could be awhile. So just info today. Putting the picture together little by little. 

Nothing major to report. Her white blood count is higher so they think her neutrophils will be when that test comes back, other than that. Keeping on keeping on. Slept most of the am and eating like crazy this morning!! 

Hello! We had a very relaxing day today. We were either sleeping or eating or sleeping or eating. Our appetite is out of control which is apparently a side effect of the steroids. We played a bit but got either tired or hungry very quickly. Jen and I are also considering sadly cutting her hair this weekend. She has been loosing it more each day and her head is bothering her, and today she has been pulling it out and looking at it sadly. We got some hats and bows but she keeps not wanting to wear them so we shall see! Tough decision and we are going to keep thinking on it. That's all for tonight, should have a slow weekend we get the quick chemo tomorrow thats only like 5/10 min so maybe we can get a bit more freedom, while we are not on iv all day with all the meds we are still hooked up for the majority of the day. 

Nothing to update much this morning sleeping and eating and then sleeping again, we had a rough night so might sleep more today than usual, started our quick chemo this am and now on our other meds. I am working on a calendar of future treatments to help solidify our planed the dates are possible to change, the amount of treatments will not though so if there is treatment 12/1 and then 12/05 and we get delayed until 12/03 then the next treatment will be 12/07. It's all very regimented so the toughest thing to wrap our heads around besides the volume and time, is that the treatment is not "reschedule or schedule when convenient" it's "if she's due for a spinal tap on Christmas that's when she does it" which is obviously not how most procedures work so def will be done but something that makes you think about all the times you've complained about "this is inconvenient for me" for little things that can easily be rescheduled. Also dad went to buy a calendar at cvs and accidently bought Octavia a present. picture below.

Nighttime update. We have been sleeping since 2 and show no signs of waking up so might be a late night. She seems exhausted. Also there was apparently talk of being able to release us temporarily for the week next week until Friday, however that her wbc count and neutrophils both dropped. She actually has a zero count of neutrophils, and anything below 500 is considered a need for hospitalization. (She was at 100 2 days ago). With that being said, while it's not impossible for them to come back up quicker, the general rule we have seen and heard is anywhere from 2-4 weeks. :x so this is obviously the biggest concern right now and why she is continuing all the non chemo meds (antibiotics, antifungal, etc.) Is that she has nothing right now to fight off any infections. So still getting updates daily on blood work, but right now that kind of time-frame basically puts us to the start of round 2 on 12/01, and also leans towards more inpatient stays than not because while her body seems to be reacting well to the chemo from a cancer going away standpoint, it seems to be having a slow recovery back to "healthy". And once the second round starts her counts will drop again from the chemo.

Morning! We slept good last night. This morning we got to go on an adventure with the nurses! Mom and dad just woke up they came in and before we could even get to her the nurses said "we got her , feel free to rest" put her socks on and put her in the walker and all we hear is cheering and clapping the whole time 

She def loved it, came back to the room with a big old smile lol so she had a blast, and now is sleeping again. 

 I'm sure Octavia can't wait to be in her room and have all her freedom there again, but I know she will be spending a bunch of time looking around like "um where are all my friends?" She will miss the nurses and Dr's here so much they have been so good to her. 

Waiting on blood work and will post more later. For now it's looking like a sleepy day again.

Dr update. Her neutrophils remain at zero, so no change with that so will remain here until... forever? Lol. Her platelets are also low, around 14. Since she has no procedures in the next day or two she is fine right now, but if she drops below 10 tomorrow she will get another transfusion. 

Morning! We had a rough night last night up from midnight to around 3am. Today we are very uncomfortable and tired but having a hard time falling asleep. Our platelets are still 14 so looks like no infusion today yay, no update on the neutrophils yet, that test seems to be an early afternoon result.

A picture from our new quilt last night that someone donated and Uncle Tony brought!!

Dr update. Our neutrophils are up to 100. So some progress was made, which is amazing! ❤️. For reference a normal neutrophils count for her would be between 1,500 and 8,500, and 500 is the lowest they would consider her "safe" to go home. We will be at the hospital a minimum until Saturday because we have out bone marrow biopsy, and our spinal chemotherapy on Friday. After that we have to wait for some results, maintain or increase neutrophils in order to see if we get to take a home break before round 2 starts on 12/01. I will note I keep saying start round two in 12/01, because I know octavia is winning this fight. If there is anything on the biopsy we would then need to re-evalute different options such as a transplant or different treatment. But again positive vibes, round 2 will start on 12/01 .

We also have made the decision to cut her hair tomorrow. She continues to pull it out and although hard to see on camera she has alot of bald spots and it seems to be bothering her. Pics to come #BaldIsBeautiful 

Morning! We had a rough night last night. Sp slept in late, Dr thinks she has teeth coming in on top of everything. Today we have our haircut at 130, and a transfusion of platelets after that since our numbers dropped again. We also had our neutrophils drop to 38 (although it may not be as much of a drop, Dr said the computer showed 100 yesterday but the manual calculation was more around 40) so still low. Will update after transfusion and haircut.

Dr update. With neutrophils being so low and not going up there is a possibility that Fridays biopsy is delayed. The reason is that it's an indicator that the bone marrow has not fully recovered, and therefore the test could give false results. Right now we are tentative to have it done at 10am Friday. No other concerns other than that right now, continued fluids and meds 3 times a day (6am, noon and 6pm) that last a couple hours each. We did get out bandage off from our suegury and was able to take a bath finally horray!

No real updates from today except that her neutrophils are still around 100. Don't have the exact number so might be below or slightly above. There is some talk of if her numbers go up of us going home this weekend until for a few days. Nothing definitive and Jen and I are not thinking it will happen, her numbers would have to go pretty far up and we start round to in a week. Hope everyone has a great turkey day tomorrow! 

No updates from Dr yet, we are having a very rough day, not sure why, we slept 3 hours last night and only 45 min nap, then woke up screaming. Nurse is checking her out now and getting her some meds to maybe help with any pain and get some sleep. Will keep updated but does not seem to be anything specific just in general unhappy. Got bloodwork, neutrophils at 99 today. So small improvements, still short of that 200 number so still may delay tomorrow's procedure.

Happy turkey day!

Ok got the Dr update, the big update is that no bone marrow test tomorrow. It's next Friday. 12/01. Apparently this is a confusion with using the normal ALL roadmap not the infant one to schedule the biopsy. Nothing else changes right now. We have our primary Dr this week here so she is going to sit with us Monday or Tuesday to go over long term plans, she is hopeful maybe we can go home mid week and wait for the biopsy results at home, but nothing definite of course. She said we would need the neutrophils to be 200 for 2 days or 500 for 1 day to go home for a bit.

Ok last clarification hopefully as far as schedule goes for the end of round one. So tomorrow she gets the spinal tap and spinal chemo and next Friday is the biopsy.

Procedure is done, went well, waking up in moms arms now. Blood work was good, our neutrophils jumped all the way to 190's!!!! Dr said it could still go down but what a good jump!

We woke up long enough to eat turkey and then boom out.

Big updates lots of info!

Alright, here we go, lots of info to give out. treatment for next month. Most of it will be outpatient, which is exciting! Calendar below. Still alot of outpatient visits but better than inpatient. The caveat is there are 4 things that could put us inpatient immediately. If she has a fever, mouth sores, bad diaper rash (open deep sores like she has had this weekend), or if she gets extremely lethargic or dehydrated. All 4 of those require an immediate trip here and most likely an admission inpatient. The current status for now is that we are waiting on numbers to go up so we can go home (her neutrophils specifically). Don't have the number yet for today. I will update once we do. The Dr is confident it should hopefully be next week so much so that she ordered our outpatient medication. But still, some things to keep an eye on. Her white blood cell count overall has gone down 2 days in a row, so it is possible she has/had an infection or virus that just did not trigger a fever, so keeping an eye on that.

ANC went back down to 15 😞  seems like Octavia doesn't want to leave all her friends lol. So sticking around a bit longer it looks like. 

Edit: Sorry ANC is her absolute neutrophils count. So neutrophils.

Morning.  So Dr came in and told us her ANC yesterday was 150, not 15. Apparently it calculated wrong yesterday, So a drop but a much less significant drop. Her ANC is not back yet today but all her other numbers we want to see go up did, her white blood cell count is over 7000, her platelets are 130. So fingers crossed for other good numbers.

Man this blood work is hurting my soul.... Dr came in and said it's strange the WBC went from 1.5k to 7k. So they are redrawing the bloodwork in a few minute and sending it for a new test because she doesn't believe it. So redo lol.

Well, the second blood work didn't work either. It apparently clotted before they could do the test. So the Dr said scrap today because irregardless we would not go home, so new blood work in the am.

Apologies for the length, we had a very rough night. 

Midnight update - we had a rough night so 

far, but not much factual info as of right now. So during our late night walk before bed mom noticed Octavia was walking a little odd, she was basically circling her left foot and dragging it, similar to what actually prompted us to come to the ER way back in Oct. We asked the nurse to look and they saw the same thing. When we tried to stand she would not put weight on it.  Once back in the room we noticed her left foot was cooler than the right foot. Again similar to day 1. We also during vitals had a very high heartbeat above 180, when throughout our entire time here she has been in the low 100's or even 90's. In fact if you recall some of my first updates were concerns about her low HR and everything checked out well and we got a little "disclaimer" everytime we went to a new department letting them know not to panic abour her hearteate being sometimes in the 50's when shes sleeping. While her HR is down now when she is sleeping its still 130 which all happened in one day. The Dr's checked her out and that coupled with the strange bloodwork the last 2 days is causing them to call her head Dr. The doctors are not concerned that there is anything emergent, but it looks like we are in for alot of extra vitals and some Dr checkin's tonight. The good, no fever and she still ate and drank well and seemed in a good mood. And she is sleeping now. As a side note her rash is better overall as in the whole area, however she has two open sores that are very rough and so we continue frequent diaper changes and all the creams in the land. Drs are keeping a close eye on it as well for infection prevention. Still waiting on the wound care Dr. Who should be back in the hospital Monday or Tuesday. 

1am update- they're going to hook her up to some fluids to see if that changes her vitals and maybe she is a little dehydrated, she has been eating and drinking but she also has been on alot of fluids for the past month and now is not. So we shall see. 

2am update: woke up very warm. Not a "fever" but very close to one. Our HR is back above 180/190.  Getting hooked up to.fluids now. On hr monitor now. 

2:15 nurse called a rapid response because her hr went to 200 and we are very close to fever, shivering and not acting ourselves. This calls in every peds Dr. And i think head nurse on the floor or atleast a group of like 8 of them.

230 - the rapid response team called her main Dr as well. They are giving her a rapid amount of fluid through the IV to determine if that helps, then on fluids all night. They are running a complete blood panel to check for anemia, and a blood culture to check for any infections or bacteria. 

245 - fever spiked, they are putting her on an antibiotic, tyloanl, and running some additional blood tests as well. The blood culture takes 5 days to be considered "negative" and she will be on a broad spectrum antibiotic until then. So in essence we will be inpatient for atleast 5 more days most likely. HR is down to 150. 

330 - everything is up and running except the antibiotic, which is on its way. I am on my way down to dunkin. Looks like an all nighter. 

345 - Fever is down, we spiked around 102, down to about 101. Will check again soon

430 - fever still at 101, Nurse is conferring with Dr. Since the tylonal should of helped by now. 

5 - we have been putting cold cloths on her as much as she allows us. It's coming down slowly so we have not forced it. Her blood counts came back, yesterday's WBC and platelets were accurate based on today's so its possible she is spiked that high because she is fighting something off. More to come on the blood work I'm sure. For now just continuing to check the temperature 

 515: we are In a bitnof a wait and see now. So I might try to get some sleep

730 am - got a bit of sleep, fever went down per nurse around 545 but is going back up so she is getting IV tyloanl now

9am update - The resident came in to update a bit, the culture has not grown anything yet which is good, still obviously day 1 of 5 for that. So for now it's "pending negative". They will be doing a followup culture as well.24 hrs from the first one. Her fever has lowered to 100. I also asked about a viral/respiratory panel. She said they won't not do one but that it's not the biggest concern with a neutropenic child, the bacterial infection is. Also you can have residual virus while neutropenic and they don't want to ascribe what she has to that in error. She is on broad spectrum antibiotics regardless. They are checking her lungs continuously to check for anything like rsv or something like that.

11 am update. She is on her way to get an ultrasound of her leg to check anything in the veins, and fluids. Have an electrocardiogram scheduled after thay for the heart rate. Will maintain fluids and antibiotics. Dr agrees with the concern because as she put it "in the month you have been here, this is the longest I've seen her sit still". She did say that, while she cannot say the leukemia is not still there until after thr biopsy, she can say what's going on atm is NOT the leukemia returning. While she understands why we go there in our minds because the symptoms are the same, she said the counts are drastically different (when we came in WBC was 50k, right now they are 6k, her platelets and hemoglobin were low and and required transfusion, vs right now they are the highest they have been). So while she is def fighting something and is not feeling good, it's not indicating anything worse than that right now. Depending on how the next few days go with her leg they may do an MRI. She would need to be sedatited for it but that's not today and just a "next step if needed".  Diaper rash is better, looks to be healing. I think I got everything so far.

345 upadate the ultrasound is done, results are good, no DVT no fluid, so all good with that. Still no heart test yet, they dont want to wake her if her fever is not spiked to high and her HR is not super high. Last check she has a slight 99/100 fever and her HR sleeping was 130. So high for her but not super high. She only woke up long enough for the ultrasound and has been sleeping since. We keep checking her temp regularly. Her ANC came back and it's down to 150, so a drop there but of course with everything else it's not like thay would send us home today even if it was higher.

So luckily not much to update on for the day after last night. Our fever has been up and down throughout the day and she's had tylonal and the antibiotics. Tonight they do another blood culture and more antibiotics. We have slept most of the day away which is great for resting and healing but not her at all. Hopefully nothing to update you on tonight and we get some sleep. Tomorrow we have the electrocardiogram and prob more rest. as of right now the cultures from last night remain pending negative so that's 1 day down of the 5.

Morning! We had a mostly uneventful night. We had a couple bumps of no pee in our diaper after a few hours but right after we had one so no concerns, and our rash was hurting a bit but nothing major. We have had no fever last night or this morning, we are still a little warm so but not technically a fever. We slept from around 1 to 5 ish, then back to sleep around 730. The cardiologist came by just now, he said he reviewed all the data and is not concerned he thinks the heart rate was directly related to the fever and totally normal response given what her body has been going through. He did the echo in the room and said he sees nothing different than her first echo, everything is perfect no concerns. So yay! Off to a good start today. 

Dr update: the blood culture continues to be negative and we have not had any new fevers. The blood culture will run for 5 days, but they said they are most concerned with the first 48 hrs ( we are at hour 33 right now). Her HR and blood pressure are returning to normal for her. We did not get the full ANC numbers yet but the preliminary shows she dropped again possibly below 100. Dr said most likely they are moving Fridays outpatient apps to an inpatient one since we will be continuing our antibiotics and monitoring. We slept most of the morning (all 3 of us).

Night updates, the wound care specialist came in for her diaper sores, he said there ulcers consistent with chemo treatment, he ordered some creams and went over a treatment plan and is hopeful that we should see results in a few days. We are still having no fever and no culture growth so yay! We are having some trouble with eating and drinking so remaining on fluids for now but this seems like a normal kid thing because it looks like she has a tooth coming in. Had some pain meds for thay this morning but seem a little better tonight. Got to play with Uncle Tony today with some egg shapes so yay!

Afternoon sorry for the late updates. Idk if I have a stomach bug or food poisoning but I was sick all night and this morning. It seems to be all better now and I have no other symptoms than stomach issues so I think it was something I ate. Wearing a mask around Octavia just in case. 

Dr came in to update us. She has concerns. Her WBC, neutrophils, platelets, and hemoglobin continue to drop. She is moving the biopsy to tomorrow. Her concern is best case scenario she was fighting something bad off and just don't show the worst symptoms, but there is a very real possibility this is the leukemia coming back. So will share more info on the timing and everything for tomorrow.

Biopsy scheduled for around 10am. We are trying to nap before then because we ate hungry and can't eat until after.

Biopsy is all done she did well. Took a little longer because they decided while she was under was a perfect time for a bath. Now we wait for the results, today or tomorrow.

I apologize I have been awful in updating the gofundme in awhile, most of my updates have been on Octavia's Facebook, if your not already I would ask you to follow. I will try to continue to update both going forward but I update Facebook regularly. I won't go to far back with updates but a brief synopsis of where we are right now. The doctors are concerned she is not in remission based on her numbers continuing to drop. We had a biopsy today and are awaiting the results .