It has been almost two weeks since our last update and we have good news to report. After last week’s ultrasound of Mac’s bladder and prostate, we learned that his tumor is responding to the chemo and it is shrinking. Because the tumor shrunk enough, the doctors were able to remove Mac’s catheter in hopes that he would be able to pee. And he peed!! We have never been so excited to change diapers in our lives! Although Mac did great navigating life with a catheter in for a month, it was definitely an added stressor that was hard to manage with an active 13 month old. The night that the catheter came out he slept so soundly… and through the entire night, which had not happened since his diagnosis.
Mac had his long day of chemo last Tuesday and another short day of chemo yesterday. He has been tolerating the treatment well and continues to have a smile on his face at each appointment. After last week’s treatment he was more tired than usual and had some vomiting, but nothing that we weren’t able to manage at home. Fortunately, Mac still loves to eat, which I love to see. He also loves to crawl around the house, read his books and play with his brother. Sometimes I have to remind myself that he can still be a “normal” little boy and that he isn’t just a cancer patient. It is amazing how all-consuming a diagnosis can become – and as we adjust to our “new normal” we try each day to appreciate all that Mac can do, even with cancer. On that note, last Friday we dressed the boys up and went trick-or-treating around our neighborhood. We had lots of fun! At literally every house, JB would say trick-or-treat and then promptly follow-up with, “Also, can I please take a piece of candy for my baby brother, Mac?” Good thing Mac has someone looking out for him! When we got home, JB wanted to count all of his candy – 103 pieces to be exact. When we reminded JB about how nice it was to collect all that candy for Mac, and inquired about half the candy technically being Mac’s, JB said that the candy had too many grams of sugar in it for Mac, and that he better keep it all. Again, what would Mac do without JB… and what would JB do without Mac?
Throughout the last two weeks we have continued to meet with different doctors/specialists about Mac’s diagnosis and potential courses of treatment. It is unbelievable how exhausting it is just sitting in a doctor’s office or hospital exam room with a doctor for a consultation like this – you’d think we were training for a triathlon! It is usually a toss-up as to who looks more spent when we leave… Marshall or me. What we have begun to realize is that the doctors don’t have all the answers. Mac’s age, type of cancer and location of his tumor is a scenario that is proving to be more unique than we thought, which is tough for us as his parents. I met another mom of an 18 month-old girl with leukemia yesterday at clinic. As Mac was flirting with this sweet bald baby girl, the mother and I started to chat about our babies with cancer – when were we diagnosed, how’d we know something was wrong, what was the course and length of treatment, etc. This mom said that one of the best things for them was that everything has been so streamlined – the type of chemo, the length of treatment, everything, was all mapped out for them on day one when they received her daughter’s diagnosis. She said that they didn’t have to make any decisions, that the course of treatment and what to expect was very well defined – black and white. Never in my life did I expect that I would be envious of another mother with a child who has cancer, but yesterday I was. I thought to myself how much I wished Mac’s situation were black and white… that the doctors could tell us exactly what we needed to do in terms of treatment for the best outcome. Do this chemo on this date; do this surgery on this date. Period, end of story, as JB would say. I wished that we, as Mac’s parents, didn’t have to face so many choices, so many “options,” and so many unknown outcomes. For us, nothing seems black and white, instead we are living in the gray area. We will continue to collect as much information as possible so we can make the best decisions we can for Mac going forward. As overwhelmed as we feel at times, we try to also remind ourselves that Mac is an incredible baby. He is strong and he is a fighter… and he will get through this. Please keep sending love and prayers – we know they are working!
