Wednesday, August 5, 2009


It's not often that I blog about life events (or at least it doesn't feel that way) but this one, or rather this series of events certainly requires some ventilation.

In May of '09, we were noticing that my (at the time) youngest son was walking a bit wobbly, not constantly however, so perhaps he was just growing into himself at the time as he had grown a great deal in height the last few months. I really wish that had been the case.

No. Instead, the only thing growing which, in turn was causing his wobbly gait was in fact a tumor. More specifically a cancerous tumor classified as Medulloblastoma.

I remember it very clearly, taking him in for his MRI and making a remark to my wife that we should take him out for a little present for the rough morning he had been through. Heh, well that was wishful thinking wasn't it? They brought Thomas in from his MRI (he was out from his anesthetic still) and began to wake him up a bit. About five minutes or so after he was awake again a team of two doctors came in to tell us that he had a tumor roughly about the size of a golf ball growing between his brain stem and his cerebellum. My mouth (from what my wife tells me) dropped. My wife, 8 months pregnant at the time bursts into tears. My son, the sweet little thing that he is tells his mother that "it's ok, what's wrong?". I calm her down while still talking to the doctors standing in our little 5x12" recovery room. They said that they specialize in these specific types of tumors and that they require immediate resection and typically treatment. But that certainly doesn't just make it all better or tolerable, it just means that you are putting your feet down on a path that leads you down a very, very long journey where you don't know what the end result is.

Shortly thereafter, we were taken up to the ER to wait while they prepared a room in the critical care unit at VCH. Numerous people were in and out of our room to explain what was about to go on, things we should be doing to help in the was all quite overwhelming as one can imagine. We were then taken up to our new temporary home on the fifth floor where they monitored every little aspect of our little boy for the next 72 hours until his surgery.

I'd like to share this short story for a moment before I explain the surgery. The day prior to his surgery, my wife and everyone else who had come down to help out had left the confines of our room and floor to get some fresh air and try to re-energize for the long day ahead. I stayed back to be with my son for some quality time. We played with his x-men and star wars figures for a while, making the usual little jokes we have with one another. When all of the sudden he slowly stops playing, looks up at me with a look I couldn't even describe and says "Daddy, I'm scared..." in his then slightly delayed little voice. I immediately responded to him by saying "you have nothing to worry about buddy, you are going to get through this, because you're the toughest little guy I know". He smiled a little and flexed his little muscles like the Incredible Hulk. I excused myself from our little battle to walk over to the window where I began to feel control of every bit of sanity I had slip away. I did everything I could to hold back the overwhelming feelings of fear and uncertainty to keep him calm and to not show him that I was sad or fearful. I had to be strong for him; really for everyone in our family; even every one of our friends and their outstretching networks of people who had heard of what happened to my child.

I had to stop. HAD TO. I couldn't. A few short outbursts of mumbled crying mixed with what I can only describe as hysteria leaped out from my chest and through my eyes. I held it in so hard that for the rest of the day I had the worst pressure headache throughout my entire skull. Between that, the lack of nourishment from stress and the lack of sleep I had to remind myself. This was nothing compared to the awful things going on inside my little boys head right now. So it passed...and I endured.

Back to it...

It was now 4:30am Monday morning, my son's surgery was scheduled for 8:00am. At 7:30 that morning they came and got him ready for his long day and explained to me the risks of the surgery which I was about to allow these strangers to perform on my sons brain. HIS BRAIN! Stroke, loss of facial movements (smiling, blinking, etc...), loss of ability to swallow, balance issues, death. Sounds like a decent trade off right? I signed the agreement. Once I saw them ship him off in his little crib, head marked for where incisions would be made (thankfully they only needed one on the back of his head) I remember just being completely numb. Everything tasted the same that day, nothing was funny, no one was consoling enough, sleep wasn't possible, nothing was possible until I could see my child alive after his surgery. Which eventually did come. We received an update every hour, always positive from one of the nurses. When finally at about 4:30pm that same day they told us they were done and that he would be in the recovery room soon.

His surgeon came into the waiting room where we were and brought us into the consultation room to brief us on what had gone down. So I'll relay that information here:

A single incision was made to the back of my sons head. They then removed a piece of his skull in a square fashion in order to have room to operate. Once they were inside, they lifted the folds of the cerebellum and could see the tumor. From what they saw, it had not gotten tangled in his brain stem or invaded any other space in his brain. They were actually able to remove the entire tumor without actually cutting ANY of his brain tissue. Thank God.

When we were finally able to see Thomas he laid in his little crib looking very sweaty and exhausted. His face was incredibly swollen (I believe he was upside down for his surgery) and a little raw by one of his cheeks from the shifting around in surgery. But for the most part he looked the same as he ever did with the exception of the throbbing incision on the back of his head.

For the next week we got nothing out of him, not head shakes, not ughs or grunts just short bursts of sheer frustration and screaming. He was trapped, knowing full well what he wanted to do (seemingly) but unable to perform it. Another week went by, he'd have his eyes open more often, I had him reach out and pick a spiderman figure from my hand one day, he wouldn't do that for another two weeks. The only word he ever really spoke in the office was to his older brother, who brought him a Bumble Bee Mr. Potato Head toy to which he said "thanks". That again, would be the only thing he would say for about the next two weeks.

After that 2-3 week span he would surprise us each day. He had gone from not being able to hold his own head up or even being able to swallow to swallowing and actually LAUGHING. This may sound cliche, but the day I was able to get him to laugh seemed to really trigger a whole new list of things that he was able to do again. He began drinking in very small amounts (he had a feeding tube this whole time) and a week later after ripping out his feeding tube, he ate. And he would not stop eating from there on out until his 15th day of chemotherapy.

So here we are almost two months into this, he's begun his second cycle of his first treatment of chemotherapy (3 cycles in 1 treatment - each cycle is 21 days long). His hair has thinned significantly and he will most likely be completely bald soon. He has already fought off one infection. Just another testament to this little boy's strength. He's most often in good spirits while we are in the hospital, it was a blessing having him home for more than 28 hours (unlike the day he got his infection and we had to take him right back).

We recently welcomed our third child into this world on the 24th of July. So now we don't only have the privilege of taking care of a soon to be 3yr. old and a 5 year old but a newborn to keep us uh..."company" all night long (just kidding the wee one has been great). It's been a new hurdle every few weeks, for instance, just today (Aug. 7th) my oldest son started kindergarten. It will make things easier during the day, but not so much when he needs to be somewhere safe and loving after school. We'll take care of it. We have to!

Wrapping up, I can say that since the time my wife broke down when they told us our sons diagnosis, (with the exception of the choked back fear and anger in the hospital room that one day) I have not had an adequate means of ventilation. I thought perhaps this would help, but it really hasn't. I have not yet told my wife the story about him saying he was scared, I'm afraid it would tear her up too much (she doesn't read this blog, it bores her). Sorry, just had another support person drop off dinner for us. That's another thing, the support network of people we've had has been simply outstanding. Mowing the lawn (it's a big, very steep yard), cooking dinners, doing laundry, shuttling our oldest son places and so on, it's been a great, great help.

If there's one thing I've learned in all of this it's that God won't give me more than I can handle. I am intrigued to see just how far that limit goes as I believe it has been pushed much further than I would have expected. Once we get through this, I feel that my family from our newborn on up will be stronger collectively for it. Especially my little trooper.

I'll follow up this post with information regarding the benefit concert a friend of ours (who just today found out her father was diagnosed with brain cancer) has put together here in Nashville for our son to raise some money for his medical expenses (don't worry, we are insured, but insurance does not cover 100% obviously).

If you read all of this, I applaud you. It's tough to hold onto a though and go with it so I bet this was probably a choppy read...

Thanks again to everyone who has helped out through this and even those of you who just give me that pat on the back when it's clear things are rough. I can't say again how lucky I am to have such a great network of friends, family and even just online acquaintances.

Thank you all.


No comments: