Our daughter, Octavia, has been sick for 2 months. We started with an abnormal blood test that we were going to re-run 2 weeks later to ensure everything was okay. However, 2 weeks later, she came down with a cold, so we pushed it off until she was better. Then a week later we found ourselves back at the Dr with an ear infection and were prescribed antibiotics. Those antibiotics didn’t work, and we were right back at the Dr with a worse ear infection, and bronchitis, and were prescribed a stronger antibiotic to help kick it out.

Fast forward to a week before her 1 year well visit she spiked a fever, was lethargic, and stopped walking. Now mind you, Octavia has been advanced with her milestones and has been RUNNING all over the house for 2 months, so when she stopped walking it was extremely concerning. We call the Dr, and they tell us to go up to the Albany ER to be seen instead of coming into the Dr office. We rush her to the ER and go through beginning to end of the last 2 months of symptoms and raise our concerns. Despite seeing no concerns and not agreeing with the need to run the tests, they did a blood test, urine test, and an ultrasound on her hip. Everything came back fine since they didn’t run the correct CBC test and sent us home. But something still did not sit well with us.

We call the doctor back again and ask to be seen as an ER follow-up and to AGAIN raise concerns that something is off with our daughter. As soon as the Dr saw her that day, she had us rush her back to Albany med to get more testing done to rule out cancer. And that was the night that changed our lives…

Octavia was poked and prodded and sent for multiple tests that confirmed she has Infant Acute Lymphoblastic Leukemia. This form of ALL is extremely rare, less than 90 cases in the country each year. Needless to say we were devastated by this news.

They transferred us to the pediatric wing so we could perform a spinal tap, a bone marrow biopsy, have a port placed in her chest, and start chemo. She will be inpatient for at least 5 weeks while she undergoes intensive chemotherapy, multiple spinal taps to ensure the cancer has not spread to her spine or brain, and another bone marrow biopsy at the end to see if she is in remission or if we need to get a transplant. And as if that wasn’t enough, we have had cardiology look at an EKG and see if anything was needed because her heart rate has been low. Endocrinology come look at her because her blood test showed a high thyroid level. And nephrology on the ready in case she needs dialysis due to developing tumor lysis which is basically the cancer version of sepsis.

Octavia unfortunately has a very long road ahead of her will include about 3 years of outpatient / inpatient stays, lumbar punctures, and possibly bone marrow biopsies to ensure she is responding properly to treatment. 

We know times are tough for a lot of people right now and we cannot tell you how much we appreciate anything you are able to do. All thoughts, prayers, shares, and donations are greatly appreciated. We will make sure to keep everyone posted and put daily updates on this page for those that want to follow her progress!

1am: So far we have done the iv and the antibiotics.  Met some Dr's and done some more blood tests. Currently attempting to do a CT scan because she has a bump on her head. Then we are doing the platelets for an hour. We started them before but stopped got the CT but she's to awake and moving for it. Once the platelets are done they will do the blood cells for about 3-4 hours. We should by tomorrow start to see her color brighten and some of the bruising and marks go down. Then at 6am we can't feed her because they will do other testing possibly a lumbar or bone tap or something else. Obviously tomorrow will tell us alot more but maybe everything yet. 

230 update. Ct scan done, platelets in progress, shows no adverse reaction. Blood should be in about 45 minutes hopefully.

430 update.  Hooking up another round of antibiotics. Blood will come after. 

First transfusion is done. The whole oncology team came in. Explained the tests they are doing today basically to see if we can get a definitive diagnosis, start moving towards what type specifically and begin treatment asap. They are doing blood work now. These are the results we have now:

Bloodwork in Sept while elevated she said she's surprised the Dr asked for a second test because it was not super indicative of anything.

Last night's blood work; shows all the signs of leukemia

Ct scan - all good no bleeding or anything but enlarged lymph nodes (again indicative of leukemia)

Chest x ray - no issues

Ultrasound - enlarged spleen and slightly enlarged kidney (again indicative of leukemia) however no masses on any organs and kidney function is normal.

Next steps, if we can get a definitive dx based on the blood test today after infusion we go right to a pic line, spinal tap and bone marrow all at once and  start talking treatment. If the test is not we have to kind of do 1 at a time to keep ruling things out.

They are doing another stool sample they found some possible bacteria and will test for others that are common in immunosuppressed people to make sure that is being all taken care of too.

We had like 12 people in here at once. Her main oncologist seems great. All the nurses are beyond amazing.

Dr came in…. It is OFFICIALLY confirmed as leukemia. It is the “better” type of leukemia. Acute lymphoblastic leukemia. They are sending the operating team down to talk to us about her procedures tomorrow. They will be pulling the bone marrow, testing the spinal fluid, placing a central line, and starting chemo. 

Depending on how the spinal fluid comes back will determine how frequently she will need to have chemo. But the main Dr will be back around 2 to talk about the treatment plan in more depth because the spinal tap results take about 2 days to come back, but the bone marrow takes about 2 weeks to come back. She said it won’t prevent us from starting treatment, but once that comes back we may need to adjust it. 

And the white cells jumping from 37k to 60k overnight is because leukemia is considered cancer of course and the cells just grow so fast. So while it’s concerning, it’s also normal, and we will see that number hopefully go down once we start the chemo, and give her the meds to keep her kidneys safe. 

And we’re keeping an eye on her stomach as well because it’s distended and hard so I need to watch that too. 

New update Technically it's infant ALL. Because why would we not have the rarest form 😞. Everything else is still the same but our team is reaching out to others in the country because apparently there are less than 90 cases a year of this type. Still more info needed because there are even smaller types beyond this sub group.

Most recent update. Tomorrow she goes into surgery to get the port and a spinal tap. Around 3-4 hours. Then starts chemo. The treatment will be 4 weeks minimum and include a combo of steroids, chemo, and other things. After 4 weeks they retest to check for remission and determine next steps based on that. For tonight they will be doing a blood test soon to check if she needs another infusion. 

She had a rough day with all the tests but we got some good play time in with blocks and did get some decent sleep. 

8pm got new iv, the worst but got to go to the toy room after which was fun

9pm getting another round of antibiotics, waiting for blood results to determine if we need another transfusion tonight. Currently yelling at the TV. 

10pm waiting on Dr orders but looks like another infusion tonight 

11pm just got all our pre infusion meds (Benadryl Tylenol and another to manage her overall fluids) will be getting it reverse this time blood first then platelets second. 

Midnight:  on the blood transfusion and sleeping. This is a 3-4 hour process we are going to try to get some sleep more updates when we wake up.

Dr's came in throughout the night just checking everything. Nothing out of the ordinary. Plan is still the same for today.

Update: so we spiked a fever and got really lethargic this am, the team came in and got her on new meds and her fever is down. They are not urgently concerned with the fever they think it's just her body fighting. 

Her numbers are better today so they are not panicking to get the surgery. We are still looking at today sometime though. We went over the plan and will get an official roadmap but it looks like 1 week of steroids and 4 weeks chemo right now. She is getting a CT now just to check on everything. 

Update: Dr just called. The Port is in, everything went well with that. Now the oncologist is doing the other 3 procedures (lumbar, bone marrow and chemo in the spine)

Morning! So last night was mostly uneventful as far as anything majorly concerned. We slept in little spurts in between all the new medicines every hour or two. 

Dr. Team came in: here are the updates. All good news. 

Blood culture - no infection 

Blood count - her platelets are good but red blood cells are low. Will need an infusion of just red blood cells today.

Spinal tap - the first pass shows no cancer cells in spinal or cranial system, the second test will come soon and verify but will also likely be negative

White blood cell count - has reduced again

Her diagnosis was clarified further as ALL - b cell, which is the one with better prognosis.

The Dr said overall she can't promise but she is optimistic that she will respond very well given her numbers are trending in the right direction, before we even start aggressive treatment, and that her cancer cells are not as aggressive yet.

The next big test results won't come for a week or so and that tells us the final kind of sub category of DX.

The plan remains the same as of now, this week continues steroid therapy and maintenance of blood counts. Chemo starts Friday and continues for 4 weeks at which point we retest everything again. 

Not much in the way of updates. Given how much went on yesterday the Dr's say it's perfectly normal what she's doing today... basically sleeping most of the day. A little waking up but not much. 

Nighttime update: we are having a bit of pain(headache it looks like) and some puffy eyes. We just got some pain meds in the IV and some benadryl. We have blood work at 10pm, meds at 11pm, and more blood work and meds at I think 4 and 530. Jen is trying to get her down now I'm sitting in the waiting room to be out of the way for sleepy time. Will text in the morning.

Morning! So we were up a bunch last night but not in a bad way.  We had a ton of energy and ate a lot. Got all our meds fine. Bloodwork was just fine and now sleeping. 

And it's our Birthday a whole 1 years old today!! 

Current update: wbc is down again! , no transfusion since other numbers are good. All other numbers look good. Getting some meds now, Dr is hopeful we can take a break from iv for the day and have some freedom!! 

Tonight's update: we had a great day. Had a little pain but the meds helped but other than that everything went good for our birthday. Routine night (blood work around 10, vitals every 4 hours and bloodwork in the am). We got to come off our iv twice tonight but will be on again soon. 

Dr stopped by this morning. 

Doing an EKG to make sure she’s good since her heart rate has dropped consistently. Running more labs and checking levels, and making sure her thyroid is good as well. No immediate urgent concerns, just covering all bases. 

All her levels are still lower and haven’t spiked, she hasn’t had a fever so off the antibiotics unless one does spike again. She’s about to get REALLY cranky with the steroids she’s on as a side effect. And she will need to continue getting platelets infused throughout her stay just to keep her levels up. 

Starts chemo this Friday and it’s a mix of doses, types, times, etc.  and gets two more lumbar chemo injections on day 15 and day 29 on top of her IV chemo. 

She also will be getting a catheter when her chemo starts since it’s so aggressive and can cause a lot of bad reactions if she sits in her pee, so she’ll have a catheter in the whole 4 weeks of chemo as well.

Nighttime update: blood work in a few minutes then again at 6am. Vitals continue throughout the night. Tomorrow we see a cardiologist to check on her heart rate. It was low today, not urgently concerning but they want to double check everything. They did an ekg and everything was good so far.