Saturday, April 18, 2009

Definitions and defining moments...

Cancer
Main Entry: can·cer
Pronunciation: \ˈkan(t)-sər\
Function: noun
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

Routine
Main Entry:1rou·tine
Pronunciation: \rü-ˈtēn\
Function: noun
Etymology: French, from Middle French, from route traveled way
Date: 1676
1 a: a regular course of procedure b: habitual or mechanical performance of an established 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

Reality
Main Entry: re·al·i·ty

Pronunciation: \rē-ˈa-lə-tē\
Function: noun
Inflected Form(s): plural re·al·i·ties
Date: 1550
1: the quality or state of being real
2 a (1): a real event, entity, or state of affairs (2): the totality of real things and events b: something that is neither derivative nor dependent but exists necessarily
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

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These are 3 words that I really, honestly, never thought I would be using together when I spoke about one of my children. But, reality is that my son has cancer and our routine now consists of many Dr appointments and trips to MSKCC. It isn't easy, it isn't fun and it isn't anything the way I thought motherhood would be. I never thought that I would be a 'cancer mom'. It never occurred to me that all of a sudden the cancer monster would invade my family, let alone invade my child. Since I can remember, I would cry while reading any story in any paper or magazine about a child diagnosed with cancer or some other horrible disease. I would see a commercial for St. Jude's and weep. I would think about how agonizing every decision those parents made must have been, but I never thought I would be one of those moms that had to decide anything even close to that. Pediatric cancer was a horror and a nightmare and something I read about, but I never thought it would be one of my kids that got it. The statistics were always there... 12,000 kids diagnosed with cancer every year, about 45 kids every day. I couldn't win a 1 in 1,000 ticket drawing at Katie's school, what were the chances of one of my kids being one of those 12,000??

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...

Love,
Chrissie


6 comments:

Lee of MWOB said...

Chrissie,

What an awesome post. Wow. You really put everything together in a way that I caught a real glimpse of this life that you never imagined could be you and now it is.

You are a strong mama. That is obvious in your words. Your children are taking their cues from YOU which is why they are adjusting to their new reality so well. Because of you and your husband's ability to adapt and survive.

I will be keeping you in my prayers. Those children of yours are absolutely adorable and precious...and that Mike.....wow. Helping the docs out along the way. My best friend is a pediatric cancer nurse in Phoenix and she tells me success stories all the time.

Keep the faith and I will too. :-)

Lee

Andersen Family said...

Chrissy, you are amazing. I just thought you should know that. There is so much more I want to say but I'm just not there yet. My family will continue to pray for your family today and everyday. FUCK CANCER!!!

Joelle said...

Chrissie words can not even begin to convey how much I hate that Mikey and the whole family is going through this.

You are a strong woman and your right to say "This will never be considered normal.". Please know that Mikey is in my prayers every night. It sounds like he is a truly remarkable little man.

Katie sounds like an incredible big sister to her lil bro.

You and your husband are doing a great job. I can tell by the way you write about your beautiful children and how you are handling day to day activities.

Xoxo, in my prayers

I agree with the Andersen family that cancer sucks donkey balls!

dude said...

((((chrissie))))

you guys are always very near to my thoughts. every time I look in my Dev's eyes, (or remember my sweet Delia), I am very aware how easily everything can change and pray and pray the next time things change for you, it will bring nothing but joy.

DysFUNctional Mom said...

Y'all are still in my prayers. I still check in. Your strength is an inspiration!

heather@it'stwinsanity said...

My prayers are with your family. I will pray for strength, for healing, and for the doctors' wisdom in treating Mikey.