I really had no idea what to expect with Mason going through chemo. I can’t speak for Tim, but I don’t feel like I ever had time to fully process Mason’s pre-leukemia diagnosis. Right after we found out about his diagnosis, we headed from Riley North to Riley Downtown where we spent the day meeting with doctors and nurses preparing for Mason’s open heart surgery. The next day, he was admitted to the heart center in preparation for surgery. Surgery came and went, and during recovery Mason gave us plenty of “distractions” from his new diagnosis. Before I knew it, we were two floors up from the heart center in a room on the hemoc floor, and Mason was receiving chemo. He was all smiles on the first day.
What took us by surprise was how fast and hard chemo hits. Mason started receiving chemo late afternoon on Monday and by Tuesday morning, he had no appetite and refused to eat all day. This continued for four days while he received chemo. After he finished receiving chemo, it was just a waiting game for Mason’s white blood cell count to fall and then rise. It takes about 7-10 days for white blood cells to fall. Over the course of his chemo treatments, Tim and I learned a lot about white blood cells, red blood cells, platelets, and most importantly, an ANC. ANC is a calculation of how strong or weak an immune system is.
Mason’s ANC fell to 0 and remained at 0 for over a week. A person with an ANC under 500 is considered to be at a high risk for infection. Therefore, the doctors would not let Mason go home until his ANC rose to at least 500. This waiting game for Mason’s ANC to fall and rise was very long and difficult.
Mason had good days and bad days. We were surprised by how well Mason handled the chemo. His doctor had told us that kids with Down syndrome handle chemotherapy better than most kids (they also have a higher success rate of beating leukemia), but Tim and I prepared for the worst. Some days Mason had vomiting, was extremely tired, and even spiked a high fever. But most days, Mason was his happy little self. He even had more energy, due to his heart being fixed, on some days….and some nights.
Although on Mason’s bad days it was very difficult seeing him sick, the hardest part for me was watching his hair fall out. Since the day Mason was born, he had a mohawk!
It was so hard seeing his sweet little baby hairs fall out.
He didn’t completely lose his hair though, at least not yet. Some wisps of his mohawk are still going strong.
I know Mason losing his hair seems like such a trivial thing to be upset about, especially in comparison to all that he is going through. But, for some reason, it hit me hard. Maybe it was the realization of what he is going through, the physical evidence that he has cancer and is going through chemotherapy, or maybe it was just me being a crazy, emotional Mom trying to hold on to the last few parts of her “baby” who isn’t really a “baby” any more. Either way, it was tough.
But, through it all, Tim and I made the best of the situation. God really was faithful to allow many visitors to come and help us pass the time. Even Mason’s best bud, his cousin Noah, was allowed to visit.
God was also faithful by having Mason treated in one of the best children’s hospitals where they do so much for the kids. They decorated the hospital beautifully for Christmas, and we put up a few decorations of our own.
One day, elves came to visit and brought Mason some Christmas cheer!
Many volunteers came around and brought Mason books, stuffed animals, cute hats to keep his head warm, etc.
Volunteers even brought Tim and I some fun toys to lighten our spirits a bit.
I even got to see Andrew Luck one night! My sister ran into him once as well. The nurses said he comes all the time. He comes by himself, no media, and visits the kids. We are hoping Mason will be able to meet him sometime!
Admittedly, towards the end of our stay, Tim and I began to get stir crazy. We were tired of being cooped up in a tiny room and not being able to leave the floor without Mason. We were exhausted from being woken up throughout the night by nurses and Mason when he was having restless nights. But, God was faithful and knew exactly what we needed. Tim and I would take Mason in a stroller and walk around the floor. During one walk, we noticed the first room on the floor and, particularly, how huge it was! It was nearly twice the size of all other rooms. Day after day we checked to see if the family currently in the room had been discharged. Finally, the room became available! We were able to move into the room and Tim and I finally felt some relief.
Then, just a few days later, Mason’s ANC started to rise. We were finally starting to see the light at the end of the tunnel. God was also faithful to give us a very generous doctor who was caring for Mason the week his ANC started to rise. He knew round two of Mason’s chemo was starting on Monday the 22nd and wanted to let us have some time at home. So, on Tuesday the 16th, when Mason’s ANC rose to 140, he let us go home as opposed to making us wait until his ANC rose to 500! We were so thankful and so excited. After being in the hospital for three and a half weeks for this first round of chemo, I was brought to tears when the doctor said we could go home!
Mason was ecstatic to be at home!
Round two of chemo started on Monday, December 22nd, but I’ll post more on that later.
I just want to add one last thing. I want to thank everyone for your continued support and prayers. Thanks to everyone who visited us, provided a meal for us, reached out to encourage us, etc. I also want to thank everyone who bought a MASONSTRONG bracelet! It means so much to us to see everyone wearing the bracelets in support of Mason. I apologize to those who have paid and have not yet received your bracelets. I am trying my best to mail out bracelets to all who have paid Tim and me. I promise you will receive them soon!