Erin has been encouraging me to “chime in” on the blog for the last month. I have been reluctant to do so as she tends to have a better way of finding the silver-lining in the tough situation that we face. Regardless, this is my attempt to contribute.
The last week has been really difficult. JB came down with Strep Throat on Saturday. For the last 6 weeks, we have been hyper vigilant about germs in hopes that Mac would not get sick. Given his compromised immune system, a common cold can be a serious issue for him. While we knew that Mac would eventually get sick in the coming year, unrelated to the cancer, we have tried to do everything possible to delay the inevitable. In some ways, our efforts seem ridiculous in that JB is in pre-school around 100+ little kids 3 times a week, Erin and I are frequently in and out of jail (for work), and Mac is at the hospital every week. Nonetheless, we were not prepared when JB finally did get sick. The anxiety of not knowing where this could go or what it could mean was rough. Fortunately, it all ended well. Our pediatrician is amazing and had JB examined, diagnosed and on antibiotics by 10:30 Saturday morning. Our parents, who have been rock solid, jumped to action and helped us keep the boys separated for the weekend. We dodged a bullet in that Mac did not get Strep – but the experience underscored how fragile he is right now.
Mac had his third “big” round of chemo on Tuesday. Erin and my mom had him at Childrens by 8 am and they were there until 5:30 p.m. Mac was a trooper, like always. He was smiling, playing with every expensive piece of medical equipment he could get his hands on when nobody was looking and even was able to overlook “hospital food” wolfing down anything and everything he could get his hands on. Chemo days are draining. It is hard keeping Mac occupied in a hospital room for 10 hours, trying to process everything the doctors and nurses are saying, and most difficult of all, seeing all the sick kids. It only takes about 2 minutes on the pediatric oncology floor to put everything into perspective. It is a really difficult place to ever feel “comfortable.”
Erin would say “Mac really struggled with chemo this time around.” I would say it differently. I would say, the last three days f*c*ing sucked. Mac was hardly phased with the first two big rounds of chemo. So, I am guessing that the cumulative effect finally caught up with him. Within an hour of getting home on Tuesday, he turned ghost white and was vomiting violently. That lasted all night and well into Wednesday. His longest interval of sleep was maybe 20 minutes. Erin literally never left his side and was calm and in control. I wish I could say the same for me. At one point in the middle of the night, Mac was so physically exhausted that he was not even waking up when he got sick. We were scared he would choke on his own vomit, that he was getting dehydrated and whether or not this was a normal chemo reaction or something different. Mac’s oncologist, whom I am beginning to think might actually be a saint, was on the phone texting with Erin throughout the night, walking us through things.
Mac is coming around, but it was scary how sick he was. The hardest part of the last couple days for me is seeing him so sick and vulnerable and being totally helpless.
The “protocol” for this type of cancer, for somebody Mac’s age, calls for 40-some weeks of chemo followed by “local control” – either surgery or radiation- usually at 12 weeks. We are on week 7, so we have decisions to make in the coming weeks. Both surgery and radiation are effective against this type of cancer, however, each carries with it its own risks and consequences. We have talked to many different doctors about our options. We have also tried to do our research. Unfortunately, there are a lot of unknowns and no easy decisions. This is a rare location for this particular type of tumor and Mac is younger than most of the other kids who have to go through this. That all translates to there are no black and white answers, which in turn, translates to frustration and anxiety for us. We are overwhelmed by the magnitude of the decisions that we are going to have to make in the coming weeks. Balancing quality of life concerns with a desire to be as aggressive as possible in attacking the cancer seem to be objectives at odds with one another. With that said, I remain confident that we will get this figured out. Mac’s doctors are amazing. Their constant willingness to dig deeper, talk to more people, and look for more answers is incredible and inspiring. Erin and I already feel that we have incurred a debt we can never repay for everything they have done for us, and more importantly, for Mac.
In closing, Mac is incredible and cancer sucks.
