The Dr. Got the PRELIMINARY report. It shows enough for her to feel comfortable saying we look to be in remission!!!!!! . The final tests are on the way to john Hopkins for review and we should have those next week. This is amazing news and we are so excited. We are of course not done and there is not much break for celebration even this exciting. So in the test there is a block of cells that are "stuck" and not growing which is causing her numbers to remain low. They are running tests to see why (they are not leukemia cells) and starting with virus testing. If she is positive for a virus which we should know in a few hours we go from there and go on a quarantine if you will. We also are up in the air on part 2 of treatment, our Dr personally wants to wait until her ANC is above 750 because if not we just will be continuing to stay here, but she does not feel comfortable making that decision 100% without consulting with some experts around the country regarding infant ALL specifically. So for this weekend we will enjoy the good news, work on getting answers on the cell blockage and wait for the experts to weigh in next week. It has been a super stressful day so hopefully no stress tonight!! 

So far the virus panel is negative for everything except for covid which they expect to also be negative. So back to square one with that lol, the doctor did mention the next thing they would look at is medication induced causes for the cell blockage. No more info on what that entails until tomorrow when the Dr is back so more on that.

Morning! Pretty uneventful night and morning! We slept until around 330 ish and then partied until around 6. Then slept until just now. So def caught up on some sleep. Our numbers also look to be good this AM, 6k for WBC and 120 for ANC. The Dr is very excited for the increase, she wants to do a blood infusion tonight to kickstart the increases and try to resolve the block. If it goes well and we continue to trend up she wants to send us home on monday!!!!!!! We will be discussing part 2 treatment tomorrow which will be delayed. She said the ANC has to be between 750 and 1000. So more good news!!!

Afternoon.  No real update for today, our numbers stayed steady and we got alot of future questions answered from the doctor.  Now we see what tomorrow's numbers are to decide if we go home for a bit! Fingers crossed for another smooth day.

Hopefully our last dinner here before we go home! Fingers crossed for our bloodwork tomorrow. 

Proof beyond anything of who's child she is. #pizza

Dr update: Today is not the day to go home. With the wbc dropped and just coming off fluid, she wants to check the counts tomorrow and monitor her intake today. She is not concerned but more cautious. We are also monitoring her for lethargicness today. She has been sleeping through literally like 7 people in here talking at full volume. 

The hope is she's just catching up on sleep lol.

Finally woke up around 1, def not feeling good, have just been laying around and lethargic, just got tylonal and seeing how that does. Doc came in to check, she has no fever but her hands and feet are very cold. No major concerns atm just monitoring her temp regularly and letting her rest.

Nighttime update: we have slept until 1pm, then slept from around 3 to 5, and we are back asleep at 6. So def not feeling great. We are refusing to eat and drink, we came off iv today and we see going to try again tomorrow otherwose we are back on the iv. 😞

Couple of whirlwind days of updates:

Our virus panel was negative and we were well on track to go home today (12/04). However today our WBC came back down again and we have been lethargic all day (as of now 8pm we have been awake only 3 hours today) and are refusing to eat or drink, so we are still here and will be ot looks like for a little longer while we make sure it's nothing but an off couple of days. 

Morning, a pretty blah night. We were up from around 8pm until 3am. Then slept until around 5am, so very little sleep. We also refused to drink or eat anything so drs hooked her back up to the iv at midnight and gave her some anti nauaia meds. From 8-3 she was unhappy and uncomfortable, from 5 to 8 this morning we seemed happier, we had a little to eat and a little to drink. We came back off iv to try again today how we do (sleeping now of course). Our numbers from bloodwork are good our anc went up to 170, so really the lethargicness of yesterday with the no eating and drinking are what is prob holding us from just running home right now, so we shall see if maybe it's nausea or what.

So Dr. Is happy with her numbers, the biggest concern is eating and drinking. She said we need to make some good progress today or tomorrow or we would need to consider an NG tube. The good news is we may have figured it out. We are giving her an anti nausea and it seems to help a little. We are still not where we need to be but much better than yesterday. We are also getting a multivitamin. This is what's holding us from going home right now.

WE ARE GOING HOME TODAY!!!!!!!!!!! 🥳 🎉 🪅 🎊.

Dr thinks she will eat .ore and more especially when we are home. Lots to do gotta pack and get all our meds from the pharmacy. We will be back Friday for bloodwork, outpatient just to check on everything but yay!!!!!!

Morning! Our first night was bumpy but still we made it through!! She woke up from around 11pm to 4am, and I think she was a bit scared of where she was, and looking for all her friends because she kept pointing for us to walk out the front door. ❤️ she missed everyone I think. But she slept great after that. And overall I think is enjoying being home again. We have the Dr's apps up at albany tomorrow at 2 to see how her bloodwork is and will continue to check that until her counts are high enough to start her second round of chemo. For those that don't know even though she is in remission, if she does not continue the treatment over the next 2 years there is almost a guarantee it comes back stronger than it was so that is why we have to continue to get chemo. But for now we will enjoy being home and a bit of normal!!! 

I'd like to thank you for following her story and being here, it has helped me to share and post. All the prayers, well wishes and love helped us make it through to where we are today. The story is not over, and I will be continuing to update this page regularly with updates and with pictures and videos!!

Off to the clinic for bloodwork!

All done and heading home, bloodwork was good. Still low neutrophils so we will be back Tuesday for the next set up bloodwork at 11am. Soon as the numbers are higher we start round 2, even as soon as Tuesday. 

Successful first visit!

We are home!!! Bloodwork was good for us to go home but not to start round 2. We have a followup on Tuesday to see if it's time for round 2. 

Happy Sunday! We are doing good at home. Slept all night for the first time last. Practicing our walking. Taking all the meds in the world which we hate but we are doing so good with them.

Christmas Jamies watching polar express!

Good update from the Dr. Today. Neutrophils are up, almost double from last time. Which also means they are cutting out a couple of the meds!!! Next appt is Monday morning and there is a good chance we start treatment sometime next week for round 2. Reminder of round 2 treatment is 2 long days possibly inpatient as they are 8 hours+ of iv, and 4 weeks of 4 days a week treatment outpatient. So will be a busy round 2 but fingers crossed we remain outpatient for most of it.

Good update from the Dr. Tuesday Neutrophils are up, almost double from last time. Which also means they are cutting out a couple of the meds!!! Next appt is Monday morning and there is a good chance we start treatment sometime next week for round 2. Reminder of round 2 treatment is 2 long days possibly inpatient as they are 8 hours+ of iv, and 4 weeks of 4 days a week treatment outpatient. So will be a busy round 2 but fingers crossed we remain outpatient for most of it.

Hanging with the best Papa ever!

Ducky Play time!

Lots of Octavia updates! So bloodwork is good, ANC doubled again. We got an antibiotic for an hour thay i guess we get omce a month going forward. She has no concerns.

Friday starts round 2 at 9am. It will be all day long prob 8-10 hours. No overnight but a long day. 

Then on 12/26 we start the iv infusions 4 days a week (so Tuesday-friday) all outpatient and couple hour visit only. That's for 4 weeks (so until 1/19).

She also has to spinal injections during this round, one on 1/1 (happy new year) and one on the 15th . Then another very long day on either the 19th or 22nd. Then her next bone marrow test should be around 2/01.

Working on the calendar for it all.

While there we got to see Santa and we were not a fan but we got a Polar express book and a cool bell from him and played with our Dr and nurse!

So round 2 now.

Daily update: 

Octavia is VERY tired and lethargic today. We did whip out our panic folder and called the doctor to make sure we didn’t need to come in to be seen, but apparently it’s normal seeing as what her tiny little body is fighting. 🤷‍♀️

Finished first day of chemo for round 2. Long day today and we just got home from our morning visit. We visited our old home up in D7 inpatient and said hi to some friends, but now we are very uhappy. It was a long day but hopefully some rest now and a break from the drs until Tuesday.

Merry Christmas from our family to yours!

Clinic visit for our daily chemo and bloodwork. We also got to show Papa the clinic and have him meet our Dr. Today, yay! While we have chemo 4 days a week, it is nice to be home each night. Right now for this week just chemo and bloodwork each day. Then the weekend off! #workingfortheweekend

another successful clinic visit and chemo. Tomorrow will be a long day, will be getting a blood infusion up on D7, no overnight stay just day but our counts are low so time to resupply.

Halfway done with our blood transfusion! 2 hours left!

We celebrate the 3 days of no doctors with our duck army.

Happy new year to all!

All 3 kids together in the first picture since mid October.