Happy new year!!! Hope everyone had a good day. Figured I'd send a beginning of the week update on our schedule this week for Octavia.

Tuesday- bloodwork and checking counts, if counts are good (which they should be since we got a transfusion friday) we have a chemo injection.

Wednesday- chemo injection with an LP and a spinal injection of chemo, so we will have no food and drink from midnight until the procedure and then will have to be under sedation so prob a long day

Thursday-chemo injection and blood counts.

Friday - chemo injection and possible transfusion depending on Thursdays counts. 

So a busy week, ill send any pictures or updates, but all will be outpatient.

Update for today's bloodwork, our numbers dropped significantly (expected) so we have neutropenia again our ANC is down to 390, and her platelets is 69. So she will most likely need a platelet infusion this week. This does not change the treatment plan for the week, except a possible infusion. What does change is even a slight fever immediately sends us inpatient so we need to be very cautious with people being around her again and keeping ourselves healthy. It also will most likely delay next weeks treatment as her ANC must be above 300 and will likely drop below that with this week's treatment. Tomorrow is still on for the LP and spinal injection but should be only a 1/2 day they have us scheduled first thing in the AM so hoping to be home around noon/1pm.

Procedure update! 

Everything went well today and we’re home. Octavia of course was super happy to be home and in her comfort zone again. Plus, we got a new play house today for her to explore! 🏠 (thanks to Make It Cute Kids!!)

Back to the clinic tomorrow for another IV chemo push and more updates to come!!! 💕

Wrapped up the week with a quick clinic visit and an IV chemo push. 

Looking like we may need a platelet transfusion next week since her numbers have dropped pretty low (to be expected) but that would delay her next cycle until we can get her over the cycle threshold. 

Other than that, still being her happy, silly self which is so nice to see! 🙃 

More to come next week!! 💕

Sorry for the delay in updates!

This weekend dad got covid and immediately quarantined in the room, but not quick enough and mom and Octavia tested positive Monday. As of right now she has no symptoms other than a runny nose so fingers crossed it stays that way. We are currently at the ER because we can't go to clinic getting our bloodwork done to see how are numbers are. There is a possibility we get admitted for the week to get our treatment. Will be determined by the bloodwork and what the Dr wants to do. More to come. For now we are enjoying some ct crunch while we wait.

Morning, we ended up getting discharged around 9pm yesterday after a platelet transfusion and some observation. Seem to be feeling fine this morning and still no COVID symptoms other than a little runny nose going on. No appt today, on hold for treatment as of right now.

Miss Octavia is doing well after her platelet transfusion despite still being positive for COVID. The only real symptom that she has is a slight runny nose. Dad is on the mend and feeling better, mom still isn’t feeling great but better than day 1. Unfortunately though, as hard as we tried, big bro tested positive this morning. 😞 

Waiting to hear about what next week will look like for treatments and where we need to go. As soon as we have updates, we will let everyone know!!! 💕

Went to the ER for our weekly labs and next steps. All numbers look good and got the clear to come home, no transfusions needed!! Home for the rest of the week since we can’t be in the clinic still due to Covid. Back to treatments next week assuming our numbers stay as good as they are!! 💪

Happy Friday! It's been a bit for an update so here's the next few weeks for Octavia.  We made it through covid with just a runny nose so super grateful for that. All our treatment got pushed back 2 weeks, because of both covid and the numbers for our bloodwork, but we are back on track next week. So Tuesday she starts back up her daily injections of chemo and most likely a transfusion at some point during the week, and then the following week she gets a spinal injection on Monday. We are done with the oral chemo for this round. Round 3 will be starting after our biopsy sometime in Feb (most likely the last 2 weeks of feb.) 

Round 3 consists of the most intense chemo and requires 4 different inpatient stays of about 3-4 days each to monitor her toxicity. More to come on that as we get closer.

Mom is taking over the visits starting next Wednesday since i am going back to work, and will only be attending the big visits going forward (spinal injections, biopsies etc.) And I'll be either going up in the evening or working in the albany office while Mom and Octavia are inpatient in feb/March. 

She is doing so great, and while I keep feeling like we should be done, it's still a very long road. We are still in the middle of round 2 of like 5 rounds of almost daily treatment, followed by almost 2 years of oral meds and frequent checkups.

Weekly update time!! 

Octavia was finally able to go back to the clinic today. 🎉 Her numbers were JUST in range to start her chemo for the week. However, looking like she will need a blood transfusion Thursday or Friday since her RBC are pretty low. We’re also monitoring her neutrophils to ensure they are high enough for treatment next week since they were just barely in range today and will likely continue to drop from treatment this week. 

More to come, but always happy to get to come home at the end of each visit 💕

Well, Octavia finished out the week strong. She had a blood transfusion yesterday which went well, and wrapped up with just a quick chemo visit today… in the hippo room!!! 🦛 

Monday we go in bright and early to get her numbers checked. If they’re in range, we’ll stay to start her week of chemo, get her lumbar puncture and spinal chemo as well. If they aren’t in range, we go home. 

More to come!! 💪

Well someone just decided to make herself right at home when she graduated from the play yard to a new carpet and more free range!! 🎓🤣

Whatever makes her happy!! 😉 🥰

Octavia loves watching the cars and buses from the corner room of the hotel. 🚙 🚌 She was super excited to be back. We’re ready to rock and roll first thing in the morning to see if we’re getting chemo and a procedure or going home… 

Keep everyone posted!! 💕

Octavia’s numbers were high enough to proceed with her treatment this week. So we started her IV chemo in the clinic, and then went down to get her lumbar puncture and spinal chemo. Unfortunately, this round did hit her pretty hard. As soon as we got to the car she threw up everywhere. 😞 she’s also a lot more groggy and sleepy this time around as well. 

But I’m sure once she gets a good nap in, she’ll be running around the house playing in no time like always! 🥰 

Picture of her and Daddy checking out the snow yesterday before we left ❤️