Main Entry: can·cer
Etymology: Middle English, from Latin (genitive Cancri), literally, crab; akin to Greek karkinos crab, cancer
Date: 14th century
1capitalized a: a northern zodiacal constellation between Gemini and Leo b (1): the fourth sign of the zodiac in astrology — see zodiac table (2): one born under the sign of Cancer
2 [Latin, crab, cancer] a: a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b: an abnormal bodily state marked by such tumors
3: something evil or malignant that spreads destructively
4 a: an enlarged tumorlike plant growth (as that of crown gall) b: a plant disease marked by such growths
Etymology: French, from Middle French, from route traveled way
1 a: a regular course of procedure
2: a reiterated speech or formula
3: a worked-out part (as of an entertainment or sports contest) that may be often repeated ; especially : a theatrical number
4: a sequence of computer instructions for performing a particular task
Main Entry: re·al·i·ty
Inflected Form(s): plural re·al·i·ties
1: the quality or state of being real
2 a (1): a real event, entity, or state of affairs
3: television programming that features videos of actual occurrences (as a police chase, stunt, or natural disaster) —often used attributively
— in reality
: in actual fact
Now, Mike is one of those kids. And now Matt, the kids and I are that family that you read about. Katie is the big sister that is spoken of so wonderfully, she is so good and attentive to Mike, she knows way much more than we care to admit she does and she's definitely too smart for my own good. Matt and I are the dad and mom that have to make those agonizing decisions and watch the Drs and nurses poke and prod our little boy while I hold him still.
Every day that I am at MSKCC with Mike there are a ridiculous amount of families who are affected by pediatric cancer there. Most of us have the same look about us. The 'we are so exhausted that we don't know how we are functioning but we'll put on a happy face, pretend we all look great and do what we have to do so that we can go to bed that night and get up the next morning.' Now, some of the moms there do look great, they look so put together and look like they are dealing with things so much better than I am. I wonder if I'll ever get to that point but for now, I am content with the look I mentioned earlier because it means I'm not melting down. And these days, that's a plus.
Last week was a defining week for me. I came to realize that as much as I knew it was a possibility and as much as I knew Mike was much more of a 'fragile' child than he lets on, it wasn't until last week that I accepted it and realized that this was reality. A simple stomach bug turned into an overnight hospital stay, 4 day-long visits to the day hospital, countless liters of IV fluids at the PDH and a 3-liter backpack of fluids at home for the weekend... not to mention the stomach virus caused c-diff and he is now on a 14-day Flagyl schedule. A bug that could be as simple as a 12 to 24 hour thing for some kids turns into a week long nightmare for a kid with cancer. This is reality. The fact that I talk to the people at the PDH more than I talk to some of my friends is reality. Going to the PDH has become a routine for us.
It's funny, I know so many adults that have cancer and a lot of them are so miserable and sick... the kids are amazing. They almost look forward to going to the hospital. Don't get me wrong, if it was all misery there I am sure the kids would hate it but they have shows and clowns and activities at the PDH every day. And the kids are so involved in their own care... I mean really and truly actively involved... Mike has gotten comfortable enough to help draw his own blood from the mediport, help flush the line and helps to take his own blood pressure! They laugh and play and don't worry about the next wave of nausea like adults do. That helps so much, that innocence that we as adults long for again really does help them through this in such a huge way.
One of the things that people say that really does bother me is that, 'This will become normal for you.' This will never be normal. In fact, by definition cancer is abnormal and evil. It isn't normal, it shouldn't be normal. Unfortunately, for this unknown period of time, instead of a daily routine that includes going to the stores and a 'mommy and me' or the park after dropping Katie off at school, we go to MSKCC. Mike gets his blood pressure taken so often not only does he stick out his arm but he places the stethoscope where it goes on his arm so the NP or Dr can listen. He helps put the vials in the vaccutainer to get his blood drawn from the mediport, he helps to flush the line and he tells the Dr which ear to check first. This is routine for him. Routine and reality... but definitely not normal. I told our favorite NP, M, the other day... I could cry (and believe me, I do) that this has become his routine, that he knows enough what comes next in a physical exam and that he helps with things like accessing his mediport, collecting blood and taking his own bloodpressure but at the same time I am relieved that each visit isn't this horribly scary time for him anymore. His getting more comfortable truly is a mixed blessing. And I hate that too. To be honest, I hate a lot of things about this. I hate that Mike is sick, that he won't have a true little boy childhood, that this time in his life is all about Drs and meds and tests. I hate that Katie has to sacrifice so much, that she was uprooted from a community she really loved and had to go through so many changes in such a short amount of time with virtually no notice, that in such a small span of time she has had to grow up so much. I hate that I am perpetualy exhausted, constantly worried and forever stressed but it has become reality and I deal with it as best as I can. I look for signs of his counts dropping constantly and I forever watch the clock to make sure he gets the meds that he needs and as long as he is playing and laughing I will more than gladly do the worrying for him. If I could take this all away from him I would in a heartbeat. I would give him a childhood free of needles, meds and daily trips to the hospital. But I can't.
So, I do my crying in the shower, thinking and stressing in the bedroom after the kids are in bed and spend my days putting on a happy face. I do the best I can and hope that is enough to get him, and Katie and Matt and myself through this. And with the support of our family and friends, who have been so absolutely amazing by the way, I know that we can get through this. I hope and I pray that the families that have to deal with pediatric cancer get through it, that the children are ok and that their families have a support system as wonderful as ours. I pray and hope constantly that the decisions Matt and I make are the right ones, that our family and friends know how much they mean to us and how much we appreciate all that they do for us, that Katie is as ok as she seems to be most of the time and that if she is not she will talk to us and not inherit her mother's knack of keeping things all bottled up inside and most of all I hope and pray that Mike gets well and remains as happy as he seems to be most of the time, that the abnormal and evil cancer is killed in his body and that he gets better and grows up to be a healthy, strong and wonderful man.
Please keep Mike, Katie, Matt & I in your prayers, please pray that for our amazing support system, for our Doctors and nurses and for all of the kids that are suffering and their families. Hug your kids, kiss your spouse, call your mom and dad... and please just pray and hope with me...