Team Naaman. Thanks for the heartfelt feedback on our last post. Your comments lift us up! We were going for enlightenment, not pity or sadness, so hopefully it hit the right target.
That being said, who’s ready to move on to The Clinic Part? Let’s start in the parking garage.
It took us a while but we are now Pro Status Air Rights Garage participants. The entrance to the Smilow parking area is a bit cooky, and you have to get through two different sets of elevators to get to the 7th floor where the pediatric oncology clinic is. Sometimes the elevators are pretty jam packed, too, and we like to wait it out for a mostly clear (read: less germy) elevator. Naaman is still little enough that random people do reach out and touch him for a squeeze, but we get it. He is cute.
The Waiting Room
Disclaimer: some days he does completely shock you and tolerate the fasting well. We love those days!
Like the waiting room, Cheeky usually is delighted to see the nursing staff who take his vitals and blood draw (yup, he is happy to see them even though he knows what’s coming). He takes off his shoes, gets on the scale, sits in the chair for his blood pressure, etc. On LP days, perhaps, but they’re probably getting the Hulk instead.
Sometimes we get lucky and he doesn’t need a peripheral (arm) blood draw; he goes straight to a room to await the doctor’s visit and the nurse will access his port in there (that’s coming next). Most of the time, Naaman has to get a peripheral draw to check his counts and be sure he is even ready for chemo and the procedure. There’s all sorts of rules and contingencies with the chemo protocol of what level is what and he can get this – honestly we stopped trying to remember the rules and just do what the doctor says after results come in!
So blood draw. Mama sits in the tall chair, Naaman sits in my lap and in a wrestling move with arms and legs, I hold him steady. Believe it or not, the nurse says Naaman is one of the best little ones at blood draw. He wiggles a bit and protests verbally of course, but the past several times he hasn’t cried. I’m not sure if that makes me happy or sad. He gets coins for the toy machine and go grabs some stickers, then we are on our way to the doctor visit room.
Doctor Visit Room
Here Naaman will be checked over by the doctor and often visited by the social worker and the dietitian. Sometimes one or more of those won’t come by until he goes to the back room where the chemo chairs are (that’s coming next).
Naaman has his oncologist and also a fellow, but depending on the day and scheduling, he might see the nurse practitioner or a PA. We relay any questions or concerns we have, she examines him. We sort of take turns chatting with social work, nutrition or doctor, depending who pops in and out. Usually Naaman will ask them for food since I’ve already shut him down. He’s been fasting by now since dinner last night, and most of the time that means he is pretty miserable. And port access. If his counts come back and/or we know he will have chemo today, our RN will access his port. That means I hold him in my lap, our awesome Child Life Specialist distracts him, and our RN puts the IV needle into his port site. He naturally dislikes this part, but has a pretty good routine of being held and bearing it by now. (Not sure what I’m talking about? See old posts, or try this video: watch a port access.)
As much as the staff try to adhere to a schedule, everything takes a long time due to unexpected delays, and it might be two hours before his lab work is back to even determine if he can have his LP or not. That’s why next he would head to..
The Back Room!
Some bleak days we can’t go to the back. Either he is contagious-sick or there is no room back there. There are isolation rooms in the back, but those are often in use already, too by transplant patients. So in happy, typical times, Naaman can head to the back to play. Again, we are hoping to dodge anyone eating. When it’s not our LP day, we make sure to retreat to our own area for snacks so we aren’t torturing another fasting child.
There are five chemo spots, two isolation rooms, and one procedure room. On busy days (like last Thursday) we were the only procedure scheduled, so we used the procedure room as our home base. There’s perks to that: windows, space, a gurney bed, and TV. Sadly, not all spots have a TV, just two of them do. Yes, those spots do fill first! And yes, we have a favorite corner spot. It can be a very long day just sitting in a curtained off area without movies or TV to entertain you.
Naaman plays a little, and we encourage as much moving as possible. Once his IV is hooked up, it’s impossible to move about freely, since he’s dragging an IV pole along. Once counts are back (sometimes 30 minutes, sometimes an hour or two), we know if we can do the LP. Then we wait for all parties to be present: anesthesia nurse, anesthesiologist, our RN, and our oncologist. And Child Life Specialist! She is invaluable, playing with Cheeky, distracting him, making him calm.
If counts are good, we sign off consent for the procedure and get going. (If counts are too low, we find out if we need to stay for other chemos or if we should head home.) Sometimes it can take an hour to get the team assembled, but sometimes everyone is ready to go and we head to the procedure room.
Sparing the step-by-step details, Naaman has a “cocktail” of anesthesia that has proven to be just the right amount to drift him to sleep for the procedure. Mama sticks around until he falls asleep then I leave to go prep his meal and meds. Plus, watching the actual lumbar puncture and the ups and downs of his vital signs on the monitor? Just going to make us worry more.
So I go quickly set up whatever food he will want when he wakes, and get all those meds ready that we talked about in Part One. We don’t go far, since complications during the LP can occur. Twice he had respiratory events, one that called the Rapid Response Team and sent us to the PICU for a few days. That is why Naaman used to have his LPs in the OR, to be safe. Thankfully, he graduated from the OR, and the LPs are usually all done quickly. We always pray he will stay asleep afterwards, since he is supposed to lay flat for 30 minutes after the procedure. During the LP, they take a sample of spinal fluid and also put some chemo in (methotrexate). A sleeping Naaman is much easier to convince to lay flat.
The rest of the day does go on longer , but varies. The plan is something like :
- Wake and recover
- Eat and drink to his heart’s content
- Take oral chemo and other meds
- Get IV chemo
- Take clinical trial drug once that arrives
- Port is deaccessed
- Schedule our next appointments
This can be an hour or it can be four. Unexpected delays pop up all over the place, so it’s best to pack good snacks, and get comfortable. He usually falls asleep on the ride home, and sort of chills for the rest of the day. Many replays of Frozen I.
Thanks for sticking with us! We hope this explains better what the day is like. We hope it helps you to pray specifically (for those who have asked), now that you know the exact things to pray for. Also, feel free to share what procedure days are like for you, if you are muddling through them, too. Stay warm, Team Naaman!