When my co-worker asked what kinds of medications Kate got this week during her two days at the PPSU (pediatric, post-sedation unit) I started counting out exactly what all she had endured and I was a little overwhelmed.
Nothing is different this cycle, but it’s the first time I’ve really taken stock of what week 1 of a cycle looks like and it’s just SO much.To give you an idea of what Kate’s week has looked like so far (any specific times provided here are not because I take good notes, but because I text my mom rapid fire so she knows what’s happening when and I can easily recall.)
A glimpse into the life of Kate, who has high-risk pre-B-cell acute lymphoblastic leukemia, on study with the Dana Farber Cancer Institute, 2.5 years old.
Our day starts with Kate waking up just around 7:30, which is perfect…we have to leave at 8:00 to drop off Conan and get to the clinic for our 9:15 appointment. We have to get the emla cream on her port which she HATES. She gets accessed at the clinic (which still involves two of us, me & daddy, holding her down while the nurse pokes her in the chest with a big, long needle.) She recovers quicker now than she used to, so it’s off to our room to wait on Dr. D. Counts looked good today; starting cycle 6 with an ANC of just over 1400 – a large rebound from last week’s 200-something! Dr. D. decided to back off her 6mp a bit for this cycle because she’d been falling too low in week 3.
Then, it’s off to the PPSU for her study chemo, Oncaspar. She ordinarily would have had her regular chemo & a spinal tap today, the beginning of cycle 6, but you cannot sedate patients and give Oncaspar on the same day. It increases the risk of reactions.We arrive at the PPSU around 10:30 where we are greeted by our awesome nurses. Kate is hooked up to fluids, oxygen, heart & breathing monitors. She then starts her Oncaspar right around noon. The infusion takes an hour, then she has to stay for an hour of observation afterwards. She’s able to eat and play and is overall a real champ. She fell asleep for 15 minutes and was able to stay accessed because we were due back first thing the next day.
Monday’s medications: Oncaspar
Mom’s edit: I also forgot to mention that she received her weekly dose of Dapsone, an antibiotic, Monday night. Tuesday morning, we learned that Dapsone can prevent red blood cells from collecting oxygen, so her oxygen levels were low on Tuesday, which put us on alarm. Joy.
Kate woke up and must have immediately known something was “off.” She was only allowed to have a little bit of juice and only until 8am. (No food for 8 hours prior to sedation and only clear liquids up until 2 hours prior.) She’s used to being greeted with milk & cheerios every morning and she was very upset not to be able to have it today. She was WAILING…on and off for an hour as we piled (again) into the car to head to the PPSU.
8:00 – on our way – hoping to arrive by 8:30 (they can only release the chemo from the pharmacy once we physically arrive in the building, so it’s important to get there at least an hour early so we don’t wait longer than necessary)
9:00 – we are ushered back to the PPSU room (room 16, our favorite) and Kate once again gets hooked up to fluids, oxygen, heart & breathing monitors.
9:45 – staff tell us chemo is on the way up and that the anaesthesiologist will be in shortly to discuss our plan. (We are very specific; I won’t let Kate have Ketamine; only Propofol & Fentanyl and I insist on an extended bolus to help her lay flat longer and sleep off the medication.)
10:00 – Kate has been so good so far but she’s reached the end of her patience. She starts to beg us for food & milk; she makes her nurse cry. She gets her Zofran to help with nausea from the chemo she’s going to get AND the anesthesia itself.)10:30 – Finally some activity! Only 30 minutes late for our 10am appointment (pretty good, actually.)10:39 – Kate gets her sleepy meds and is out. I leave the room crying (as usual) and the spinal tap procedure begins. After they take the spinal fluid for testing purposes (to make sure the leukemia is still in remission) they put BACK the same amount of fluid, only this time in three various types of chemo: AraC, Methotrexate and hydro-cortisone (a steroid, but in this case, considered chemo.)
11:00 – They are done and we get to go back to the room to kiss our baby. She’s peacefully sleeping and I’m thrilled to see that the rest of her chemo has arrived so they can get started.
11:05 – Vincristine chemo starts
11:25 – Zinacard starts (protective heart medication starts)
11:35 – Kate’s LAST dose of doxorubicin starts (YAY!)
Kate wakes around 12:10 and slowly sits up, wanting a little snack. She eats cinnamon teddy grahams and water and sends her daddy out for milk and pizza that we know she won’t eat.
We are discharged around 1:30 and head home, barf bucket in hand. Kate has done well on this most recent formula of sedation meds and hasn’t gotten sick, but we’re ready anyway. She asks “Mommy, what dat bucket for??” 40 times in the car ride home. Thankfully, she is NOT sick yesterday. SUCCESS!
It is 4:00 until she eats and then it’s a small smoothie & a few bites of pasta. She’s drinking a lot though, which is good.
7:00 – Kate gets her first dose of 6mp for this cycle and asks to go to bed at 7:20.
Tuesday’s medications: Zofran, Fentanyl, Propofol , AraC, Methotrexate, hydro-cortisone, Vincristine, Zinacard, Doxorubicin, 6mp.
So, if you’re still with me, I’m impressed. THANK YOU. For those keeping track, in two days, my 2.5 year old BABY has had 7 kinds of chemo, 2 kinds of “sleepy medicine,” a protective medication for her heart and anti-nausea medication. Today she started steroids (a well documented pain in the ass that I won’t bore you with here) and more anti-nausea medication.
This child? She is braver than I’ve ever been about anything in my entire life.