Chemo Round 5
Chemo round five started on 11/30/22. This round of chemo was the same medications as round three. It is three days of infusions and extra hydration, so we were inpatient Wednesday through Saturday. This chemo is known to have delayed nausea so the doctors sent us home with IV hydration for over night.
On the day of admission we always check in to clinic (outpatient) to get set up and ready for our inpatient room. This day we waited extra long... they knew we would have a room but just was not sure what time it would be available for us to get settled in. So we waited in clinic for hours, playing games, watching movies, and eventually Payton napped! We transferred over to our room around 6pm. That night chemo didn't start until around 1:30am. This round Payton seemed anxious, maybe we because we had a long day of waiting or maybe because she was starting to understand that soon the chemo effects would start and she would not feel great. Either way she had a hard time sleeping. When we are admitted Payton and I share the hospital bed and we typically sleep together pretty good. This night she just wanted to play and run around. She was finally in and out of sleep.
Our inpatient stay was pretty uneventful, which is good. She did start with some nausea on Friday night despite the round the clock nausea medicine. We went home Saturday and Payton was defiantly nauseous, getting sick every few hours and just not keeping much down. We started her on the IV fluids over night to help keep her hydrated while we were home. She was definitely hurting this round, you could tell she didn't feel great, she had low energy, didn't want to eat or drink, and just could not keep anything down. During our clinic visits the next week we stayed a day for some extra hydration and one day she had a blood transfusion. The doctors knew this chemo had lingering nausea, so it was almost a waiting game until she started feeling better.
We had our clinic visit on Monday 12/12 to check her blood work. She was in need of some platelets and as we were getting prepared to start her transfusion Payton spiked a fever. At least we were already at Hopkins right, no need for an ER visit! Anyways, Payton was admitted that day to inpatient for her fever. When getting admitted for a fever the doctors run a set of virus test and Payton's came back positive for RSV. She had started a runny nose two days before and a cough that day. At this point Payton had been so nausea from chemo she had not really ate in over a week. We had tried a few formula feeds through her g-tube (feeding tube) but she would shortly after throw everything up. My poor baby was miserable and to be honest I was happy to be admitted at this point. It would help me get her feeling better.
Payton's fever came from her low blood counts and ANC at zero, as she has with almost every round of chemo. The doctors started her on a medication to help clear up and support her RSV symptoms. With her nausea and not eating, it was our top priority to get her on a feeding schedule and trying new nausea medicines. The doctors started Payton on a very low slow rate for feeds through her g-tube with hope we could up her rate each day. This was a continuious feed, so she was constantly getting a slow drip of formula through her feeding tube. The nausea medicines we started seem to be working. She was starting to throw up less and seem to be keeping her feeds mostly down.
On Thursday, 12/15 Paytons ANC was at 1,000, yay! The doctors were saying we would be able to go home. We had Payton's nausea under control and she was on a feeding schedule. We made a plan for nutrition and feeds with our dietitian. Payton was still not back to her full energized self and seem pretty lethargic. But her body has been through so much, I assumed she just needed the rest. Before the final ok on discharge that day the doctors wanted to re-run some blood work. One of her test results was coming in very low. The results from the re-ran blood work looked the same and Payton electrolytes were very low. Payton had something known as refeeding syndrome. This does not typically happens in littles but more commonly in patients with eating disorders who are reintroduce to food. I guess because Payton's nutrition has not been great throughout chemo and with this last round she did not eat for over a week, her body was just reacting to the intake of food. The doctors and dietitian said this is rare to happen so quickly from not eating but every persons body and metabolism is different. No one could of predicted this would happen, but we are happy they found it before we were discharged and things could of got much worse.
Basically Payton's electrolytes were low and she would need supplements to stabilize. They gave injections of potassium and magnesium, as well as adding different hydration support. The refeeding syndrome basically means Paytons body was working extra hard to "eat" and using all her energy. This is why she was still so lethargic, with small burst of energy. Once she started receiving the support and supplements her energy was getting better. The doctors did not have a time frame on how long it would take for her to regulate but they would check her electrolytes every 8 hours. Once she got to a point that she did not need support from supplements for 24 hours, she would be good to go home. As her levels increased so did Paytons energy, she was finally starting to feel like herself!
We keep her on the round the clock feeds and slowly increased her intake every 12 hours to help get her to her calorie goal. By Sunday Payton was feeling good, her electrolytes were stable and the doctors said we could go home! At this point, we were comfortable going home since Payton was defiantly feeling much better. Plus we would be in clinic two times that week to check her levels again.
Her RSV symptoms stayed mild with the runny nose and cough, she never needed oxygen support and was otherwise fine. We were told the cough would linger and we should, of course, watch her breathing but overall she was doing great with that. So we headed home after seven days inpatient and just in time for Christmas week.
We were able to spend that week mostly at home with a few trips to Hopkins for blood work. Payton was feeling all better and back to her sassy self, so Christmas weekend we spent home with family.
Round five over all was hard. Payton was by far more nausea and sick than she had been since back when she was first diagnosed in July. It was a really hard month on me and her. She lost about two pounds this month and is still not super interested in eating. We are keeping up with her daily calorie goal through her formula (we call it her milk) and she hasn't needed to use the g-tube for feeds because she drinks them straight. We have noticed that food is still a struggle. Payton has always been a picky or hard eater since she was a baby, you add in chemo which can change the taste of things and the fact that she is a toddler and food is a struggle to say the least. But we are doing good and finished round five of chemo.
Round five concludes her first leg of treatment known as "induction therapy." We now rescan and prepare for her bone marrow transplant. Currently her transplant admission is schedule to start on January 11th. I will write a post with some transplant information coming soon.
Thank you so much for the constant support and love! We appreciate everyone :)