Sunday, August 18, 2013

Interim Maintenance 2 Clinic Visits

On Wednesday June 19th, We had the first clinic visit of the 2nd Interim Maintenance phase. Molly had to have a lumbar puncture in the RTU for this visit, so she had to skip breakfast that morning, which is one of her least favorite things to do. To make it easier on her, we have Big Sis sleep over at Grandma's house the night before, and Mom and Dad get up early to eat breakfast before Molly wakes up. That way there's no food taunting Molly in the morning before we head out for the clinic appointment.
Molly always gets to play on Mom's iPod when we go to the clinic. Her favorite game is Monkey Preschool Lunchbox.
On Tuesday June 25th, Molly woke up with a fever. Of course Mom was extremely worried that we'd have to stay overnight at PCMC again, so she called the oncologist and asked if we could just go over to the local ER and have them do the blood tests and if something turns out positive then we'll head down to PCMC. Thankfully they said that was fine, and we spent most of the day at the local Emergency Room. The tests were all negative and we got to go home with instructions to monitor the fever and if it's still there in 24 hours then we go to PCMC.

Big Sis got to stay with Molly while we were at the ER for Molly's fever. Molly really liked having her there.
 That Friday, Molly had a scheduled clinic appointment that went really fast because she just needed methotrexate and vincristine into her port.

In the clinic rooms they have these neat toys attached to the walls that the kids can play with while waiting.

The Child Life specialists at PCMC are absolutely wonderful! They've gotten to know Molly so well, they always remember to have a baby doll ready for Molly to play with. I think Molly's aunt McKenna would be a wonderful child-life specialist, if that's something she wants to do.
 Our Independence Day celebrations were great...we went to the city park and they had bouncy houses there. Molly didn't go on them last year, but she braved them this year, and loved it!

Also, Molly has started learning her letters and sounds on the computer. is the same website Big Sis played on when she was little to help learn the letters and sounds, so she is usually right next to Molly helping her figure stuff out.

On July 8th we had another easy clinic visit, just like the last visit. We both really love these quick visits! We're pretty much in and out on these days.

Molly's so used to the blood pressure routine that she's to the point where she's telling the nurse what to do next, which buttons to push, and taking the cuff off before the nurse even notices that the machine is finished.
 July 17th was a no-food RTU lumbar puncture visit. When we do the RTU, I carry her into the procedure room when the anesthesiologist lets me know they are ready, and I sit her down on the bed and they hook up her port to an IV. Then they take a syringe filled with propofol, which is white in color, and hook it to her port through the IV line. She starts to feel the effects almost immediately and somehow knows that she'll be waking up shortly without Mommy, so she fights it a little. Then after she falls asleep fully, I go wait in the hall and about 30 minutes later a nurse comes out of the recovery room door and tells me that Molly is waking up and ready to see me. I go in and help her wake up more, we give her something to drink (usually apple juice) and maybe some chips, and then de-access her port. They send us home with instructions not to let her fall asleep in the car with her head down on her chest, and not to let her do any high-coordination activities for 24 hours. After our RTU visits, we usually go to the hospital cafeteria and grab a doughnut and some juice.

Sometimes Molly likes to sit on the bed in the clinic room, but usually she only wants to sit on Mom's lap the whole time.
Friday July 26th was the last visit for this phase. The visit went so fast that I didn't get a chance to take any pictures! We got into the clinic room and almost immediately they came in to take her blood for their routine labs and then right after that the doctors came in to check her, and then while the doctors were in there the infusion nurses brought her chemo (methotrexate and vincristine) in and administered it right then and there! It was so fast we were out the door about 40 minutes after arriving.

We had almost 3 weeks off until our next appointment, which starts THE MAINTENANCE PHASE!!! The doctors told me that the only count-dependent part of the maintenance phase is the first visit, and then after that it doesn't matter how low her ANC counts go, we still plow through to the end. The only thing that can set us back is if her labs come back with something abnormal like her red blood cells and platelets suddenly drop. I don't think that's likely though, because she's been doing so well on her treatment so far. So here's to the next two years! I'll be updating after each visit (every 4 weeks) so watch for that! There will be another post very soon for the details on the visit we just had this week.