Round two of chemo was the longest and toughest thus far. On December 22, 2014, Mason was admitted for round two of chemo. It started with a bone marrow test, which Mason was put under for, and then chemotherapy later that day.
We decided to try this round on the Riley floor at IU North. This hospital is in Carmel, which is where Tim works, and is closer to home. Mason’s oncologist is also located at IU North and is where we’ve been doing our outpatient visits. His oncologist wanted us to do the first round at Riley Downtown since we started chemo so soon after open heart surgery. If anything happened with his heart during chemo, we’d be in the same hospital as his cardiologist and surgeon.
Mason received chemo for three days. For the first two days, chemo was given from an IV through his central line which was surgically placed in him shortly after heart surgery. On the third day, which was Christmas Eve, the chemo had to be given through a shot into the muscle. This chemo can be very dangerous, therefore, they had a crash cart sitting outside of his room, just in case anything would happen. It was pretty scary knowing that they prepare a crash cart “just in case”, but the doctor said they rarely need to use it, which was reassuring. Thankfully Mason handled the chemo well, and after an hour of being monitored, we were able to go home!
We were able to spend Christmas at home with family, which was the greatest gift we received last year!
On December 29, 2014, Mason was readmitted to finish out round two of chemo. He received chemo through his central line for two days, and then again on the third day, he had the shot of chemo into the muscle. Like before, he handled it well.
The side affects of chemo hit Mason faster and harder this round. By New Years Eve night, Mason was vomiting every 5 minutes. It was so hard to watch him get sick over and over again. Thankfully that only lasted one night. Then, about a week later, Mason got a fever. His fever lasted four days and spiked as high as 103.3 one day. He felt miserable and didn’t want to do anything but sleep and cuddle. I can’t say I minded the cuddling. 😉
Mason’s ANC took longer to bottom out at 0 this round. It also took longer to rise. We went home on day 22 during the first round. Day 22 hit this round and Mason’s ANC was still at 0. It remained this way for several more days. Finally, Mason had an ANC of 7. It wasn’t much, but it was progress. We began to get anxious and hopeful that we’d be going home soon. The next day, his ANC was 8. This wasn’t quite the “jump” that we were hoping for. But again, it was progress. The next day rolled around and it was 8 again.
At this point we were feeling so discouraged, anxious to go home, and stir crazy from being in our tiny little room. Unlike at Riley Downtown, we were not on a hematology/oncology floor. We were on a general pediatric floor. Because we were on a floor with kids who were fighting the flu, pneumonia, RSV, etc. and Mason had no immune system, Mason was not able to leave the room. We weren’t even supposed to have our door open. Mason is an incredibly social little guy, so this was very tough for him to be cooped up in a room with little contact with people.
We missed being at Riley Downtown where we could take Mason out of the room and walk around the floor. We also missed the nurses and other families that we got to know who would pop in and say hi when our door was open. We had a good experience at North, but decided we wanted to finish Mason’s last four treatments Downtown. In order to do so, we would have to switch from our oncologist at North to an oncologist Downtown. This was a very tough decision for us, as we absolutely loved our oncologist, but we couldn’t fathom spending his last four treatments feeling like we were in isolation. Thankfully, during Mason’s first round, we met an oncologist who we really liked and he accepted Mason as his patient!
Finally, on January 18, 2015, day 28, Mason’s ANC rose from 8 to 70. After a blood transfusion and platelet transfusion, we were able to go home!
We were also told that since Mason has been handling chemo so well, and because we live close to both hospitals, we could try the next round outpatient. He would have to be inpatient while receiving chemo, which would run about 5 days, but then we’d be able to finish out the round at home while he recovers. Now if he gets a fever, we’ll have to go back to the hospital and finish out the round inpatient. He’s gotten a fever with every round, but he typically hasn’t gotten it until a week after chemo. That should buy us at least a week at home which we wouldn’t have if we had to continue treatments inpatient. We are praying for a miracle that Mason won’t get a fever so we’ll be able to remain home until his next round starts on February 24!
One very neat thing that happened this round was that I was connected with another mother who’s son is battling Leukemia. He too has Down syndrome and is very close to Mason’s age. I think God knew how lonely this journey can be and connected two mothers who truly know how the other is feeling. These two cuties are the toughest little guys I know. I can’t wait until they are CURED and can meet in person!