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.
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.
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.