Oof. Yesterday was one of the most challenging days of our 5.5 year history with leukemia, and as usual Brooke moved through it with grace and strength and light.
She was admitted back to CHOC on Tuesday with the intention of starting her final cycle of treatment before Maintenance, but upon arrival, during a routine dressing change, we discovered that her central line had moved out of position. Her chemo had to be postponed and she was put on the add-on list for surgery yesterday to remove her Broviac line and replace it with a port-a-cath. The plan has always been to switch to a port once she got to Maintenance, but since her Broviac was no longer useable, we had to make the switch a few weeks early.
Although this was my 5th time sending my daughter off to the OR, it hasn’t really gotten any easier. And the last-minute, semi-urgent nature of being an add-on did not help. Every other time it’s been scheduled in advance and we had a surgical consult several days prior to it, and lots of time to prepare. Yesterday was a different sort of experience.
She wasn’t allowed to eat or drink past midnight, to be ready for the surgery whenever they called us. My poor girl was super hungry, but she didn’t complain and passed the time cheerfully watching TV and playing a game with her toy mermaids in which the storyline included a lot of eating! The mermaids talked to each other about their favorite foods, made cupcakes, and went to restaurants.
Thankfully the wait was not as long as it could have been – they called for us at noon. Unfortunately the surgeon was insisting on a lab draw to make sure her platelet count hadn’t dropped significantly in the two days since the last draw. Our patient nurse spent 30 min trying to get blood from Brooke’s stubborn Broviac, to no avail. So that meant adding a poke in the arm to her challenges.
Brooke was amazingly cooperative through the poke, transport to pre-op, getting a dose of “relaxing meds”, and even smiled and waved cheerfully as they wheeled her off to the OR. Seriously, what a light beam she is!
I was a bit uneasy about the procedure because her surgeon had a lot of difficulty getting her Broviac line in when she relapsed and that’s why we haven’t replaced it in the last 14 months, even though it’s been notoriously ineffective at giving blood for lab draws and she’s had to have infusions of anti-clotting medicine pretty much every week for months. She only had one more vein that could be used for a central line so we have been saving it for the port. And so with all this, it was difficult to hand her over to a new surgeon, unfamiliar with her case. I gave the surgeon all the info I had though, and had to trust that it would all be ok.
I sat in the waiting room with my mom, Brooke’s Dad, and Aidan for 45 minutes before the surgeon came out to let us know all was well. She had tried and failed to get a line in on Brooke’s left side and said it must be clotted off (just like I’d told her), but she tried again on Brooke’s right side and had no trouble getting the port in there.
After another 20 minutes or so, they brought Nick and I back to see her in recovery. She woke up gradually and said she felt ok. She got really irritable and impatient at this point though. It was after 3:00 and she hadn’t had anything to eat or drink yet, she had monitor leads stuck all over her body, and they were telling her they needed to do another chest Xray and wait for transport before she could get back to her own room, remove the leads, and finally eat. My little lioness was very clear and vocal about her impatience about all this, and honestly I felt proud of that too. I mean really, enough is enough!
Soon after, back in her room, she shamelessly shoveled handfuls of grated mozzarella into her mouth while the nurses fussed with her lines and removed her leads. And once she’d changed out of the hospital gown and everyone left, she and I snuggled into her bed, watched a new Barbie movie, and chowed down! She fully celebrated her regained right to eat with a huge feast of cheese, chips, grapes, mini pizzas, and chocolate.
Despite the healing site in her chest where the Broviac was removed, 3 incisions they made to get the port in, and 4 needle-poke sites, she felt pretty good last night and was able to walk down to the gift shop to select a prize for all her victories!
All is well, and among the things we’re grateful for is that Brooke now has a beautifully functioning port! After 14 months of fighting with the Broviac pretty much every week to get labs, we can barely remember what it’s like to have a line that just works!
Today Brooke is a pretty sore and also nauseous from her chemo, which started last night. Her spirits are good though and she’s healing up. It was a rocky start but her final cycle is off and running! 50 weeks down and only 6 more to go!!!!! It looks like Brooke will be home for Christmas and ready for Maintenance by New Years!!
