Saturday, January 31, 2009

Another Seizure

Henry had another seizure early this morning. Around 3am he wretched in bed and woke Tara who was sleeping next to his bed. She called me after he was unresponsive. He remained so, open-eyed and intermittently shaking and twitching, for about 45 minutes. After calls with the Hospice nurse we administered some anti-seizure medication. Three or four minutes afterward he began returning to normal and soon after fell asleep with minimal interruptions until morning.

Hearing Henry's voice in the morning was instantly comforting and anxiety provoking. He was only partly intelligible. He was slurring his words and was slow to move. I sat him on the couch to wake up a bit in front of the TV. He was clearly not himself and upon discussing things with our oncologist, we opted for a trip to our local emergency room for a CT scan of his head to ensure that nothing other than what we guessed was at work. We got the girls off to Grandma's and headed over.

We're back from that visit now; only a partial day spent in the emergency room. Since neither the ER doctor or our oncologist had the benefit of seeing the current scan with the prior ones, the report was less than meaningful. We received a copy which we will forward to Hopkins for review. Until then we're glad to be home and to have Henry returning to himself.

Sunday, January 25, 2009

Seeking Balance

I have to say as a general rule that when there are gaps between posts, usually things are going well. Thank you all for your emails and calls with concern, but generally, all is well.

We took off last week for a road trip to Kansas to visit my folks and extended family. Because we've not been able to plan far ahead, we decided to drive. I was a bit skeptical at how kids that are accustomed to traveling at most 60-90 minutes occasionally would deal with a 19 hour, two day trip, but things went very well. We spent four days with at my parents house and had many visitors and also lots of down time. We got lots of great pictures and I'm eager to post them but the time since we've returned has been busy.

I have to admit, too, that the blog is strongly associated with Henry's illness; with working out feelings, with communicating urgent news, and with documenting details and memories. Recently, both Tara and I have been allowing ourselves to get caught up in the flow of daily life. His medicine has become so routine, that we don't even talk about it. I set it on the table, he takes it, we're done. The coming round of chemotherapy will be a bit harder, but 5 days is blessedly short. Visits from the Hospice workers are also becoming anticipated and routine. The kids enjoy their visits and see them as family friends more than social workers and nurses - really a terrific bunch of people. I would never have believed that life could look and feel so 'normal'.

Which I suppose is why, right now, that there are days when things are going so easily well but my head feels filled with sludge. Our family is maturing, Henry included. He's (usually) not very needy, can play very independently for the most part, and is enjoying activities and visitors. We sit around the table at dinner and have fun conversations. Henry and Sophie saying absolutely cute and silly things. We laugh. We tease Anna about boys. It's miraculous and wonderful and perfect.

And it's about at that point - when I've momentarily forgotten, lost in the pleasure of seeing what every parent hopes to have, a happy family - that I feel that squeeze on my shoulder that reminds me of what's to come. There's a moment of anger, a moment of acceptance, a moment of 'why?', a moment of resignedness. Among the flash of emotion, there's a fragment too, of the potential lottery winner, thinking that maybe, just maybe it will just go away and I can have the boy back that I cry about when I look at old pictures. The carefree times before cancer. That maybe one day we can talk of it in the past tense. The dichotomy is a heavy one. I try to keep perspective and remain grateful that we have this time without worrying about what's next. This pain-free, happy, joyful, loving time to spend with "only" the anxiety of tomorrow instead of moment to moment pain. It's a balancing act. But we're truly grateful to be in that place right now.

Tuesday, January 13, 2009


This morning I discovered an opportunity to make the voices of children with Childhood Cancer heard just a little more loudly. The incoming administration is providing citizens with a chance to offer ideas, the most popular of which will be included in a briefing book that will be reviewed for funding.

Please consider signing up at and voting for the following issue to increase funding in search for a cure to Childhood Cancers.

Increased Funding for Childhood Cancer

Friday, January 9, 2009

Busy, Busy, Busy

I had to sit down and write this morning. Since Henry woke up he has been going at 100 miles per hour. He's been running through the house, spanking Tara and I and then hiding. He chased his sisters around the kitchen this morning before school while meowing like a cat. He took a break to catch a little Curious George on TV, but now he's busying himself taping notes up to his workbench and 'fixing' things with a hammer and pliers. He's completely full of 4 year old energy today!

We're soon headed off to the coffee shop to read books until its time for his Little Gym time. Then we'll grab a quick bite at home and change into our swimsuits for some pool time at the YMCA. He's very excited and it sounds like it will be a good day to use some of that energy up.

Tuesday, January 6, 2009


The last few days have been really nice. We had a very normal New Year's Eve with friends and the beginning of the year has been low stress and uneventful. Tara has begun work again after a nice break and we're beginning to get excited for a trip to Kansas soon to visit relatives. It all seems very normal and for that we're incredibly grateful.

Ignoring the blog, (almost) forgetting to administer Henry's steroids, hosting the Hospice folks - but only occasionally discussing anything material - all allow us to thankfully deny the inevitability of things and maintain a 'normal' life. We've been so busy and Henry so full of energy that I unexpectedly found myself with a few moments in the house by myself recently. I sighed in relief to have a couple of minutes to think, but was wishing it away moments later. It seems the bustle keeps my mind off things.

There's a sort of guilt I have for how easy things are now and how I cannot seem to gather it all up completely enough. Henry's enjoying life, pain free, oblivious to the pending crisis. The girls are too, happy to be taking trips, enjoying their mother being at home more. I read with great difficulty, how other children with cancer are coping. In a moment I feel like its worlds away, empathy, then quickly realize that one or more of those scenarios will be ours. How to feel?

As for Henry, I can't say enough how spectacularly he's doing. He's sleeping relatively well and has an abundance of energy. He's maturing and gets excited about things. He's been actively recalling memories of times past, almost as if he previously lacked words to describe the events, but now recalls them with great detail. Today we ran around in the gym at the YMCA with friends. He asked me after feeling my forehead, "How can I get sweaty?" He raced back and forth to the water fountain in his attempts. The effect of seeing him run and laugh is so soothing to me. He gets lost in play and it is so so good, so 'child', so pure.

When he goes to bed at night now, I can't help but think in a very discreet way, that we've slowly slipped beyond another day. It's that way for us all, but I guess the sheer quantity that we think we have blinds us to the value of each and every one. I cry sometimes to think of how soon I may wish for the day I have with him at this very moment. I try to soak it all up but I get this overwhelming feeling of trying to absorb the ocean, of trying to hold back a flood, or trying to keep the sun from rising. Time quietly slips away and is gone and that's all there is to it. We only have this moment. And memories.

Tonight as I read my email before bed, I checked on another child we watch that has the same disease as Henry's. He's recently had a downturn. It was painful for him and I'm not sure I've let myself imagine what it was like for his parents. Tonight's post from his mother was to let everyone know that he'd passed on late last night. As inevitable as it seems it doesn't make it any easier to know.

I'm off to bed now and, having written, anticipate that my mind will finally let me sleep. I hope to wake up and slip into the din of normalcy again tomorrow. But hopefully, I can carry enough perspective with me appreciate the preciousness each and every moment.