It’s been a while since I’ve written a blog post. When we’re at home, we’re extremely busy with doctor appointments, home health care nurses coming to the house twice a week, therapies three times a week, etc. When we’re in the hospital, we’re exhausted. Typically I would write a blog post while Mason napped in the hospital, but lately, out of physical, mental, and emotional exhaustion, I’ve been crashing and napping when Mason naps.
Mason started round four of chemo on February 24th, 2015. Round four was one of the smoothest rounds thus far. Round four consisted of the same chemo drugs and schedule as rounds one and three. The only difference is that this time around he did not have a bone marrow aspiration or spinal tap since he was in remission after the last round. After his last bone marrow aspiration and spinal tap during round three, samples were sent off for MRD (minimal residual disease) testing. This would tell us how much cancer remained in Mason’s body and if he has a high or low chance of relapsing. Testing came back that Mason has 1% cancer cells in his body. For a typical child, this would mean that he has a high chance of relapsing. But, kids with Down syndrome can handle more cancer in their bodies. So, Mason’s oncologist is pretty confident that Mason has a low chance of relapsing. Although this wasn’t quite the reassurance we had hoped for, we were hoping for a much smaller percentage of cancer cells, we are thankful that Mason should not relapse.
Mason spent five days in the hospital receiving three different types of chemo orally and via IV through his central line. On the last day, the chemo caught up with him and he had some severe vomiting. He slept most of the day and thankfully we were still able to go home once his chemo ended that evening.
Just like round three, Mason was able to recover at home. This time around he did so well, he didn’t even need any blood or platelet transfusions! Recovering at home was still busy though with different doctor appointments, home health care nurses coming twice a week to care for Mason, and therapies.
Our house has been transformed into a little nursing station!
During round four, Mason received an echo since he never had a follow up appointment from his open heart surgery. While we were home recovering from chemo, we went to see Mason’s cardiologist to discuss the results of the echo. The echo showed high pressure in his left lung, which could be caused by the small VSD (hole) in Mason’s heart that was too risky to repair during surgery. We were scheduled for a follow up echo and appointment for the following month.
While we were at the cardiologist, we had to undress Mason to get his weight. When we did this, we noticed that his dressing which covers his central line and keeps infections away, came uncovered! This is a very serious and dangerous issue. We were so thankful to be at the hospital when this happened because a nurse from oncology was able to come immediately and put a new dressing on Mason!
We were very thankful to have a smooth round and have four chemo treatments behind us. Round five would start on March 24th. More on that later!