He went to his Little Gym class yesterday, he insisted. He mostly watched, but couldn’t resist sitting on the blow-up runway as it was inflated. He promptly dismounted with a smile. He sat for an hour watching the kids run and play, the whole time giving me running commentary. “I like the dots on her pants” “Those rings are new” and occasionally, still seated, manipulating the props that the other kids do standing.

Everyone is, of course, at home today as its Saturday. I find more comfort in the weekends now than ever. I suppose that it’s the girls’ presence. They are so amazing at how they’re handling all this. I’m learning better each day to live, just for today, not to worry about what things tomorrow or next week or next month or year will bring. The girls haven’t unlearned this yet.

For now, things are comfortable. We’re managing Henry’s pain, which is still minor, but mood-affecting. We’ve begun occasionally administering Morphine which is extremely effective at pain management with an incredibly small dose – just a drop or two takes care of things for hours. It allows him to experience things care free and comfortably. He becomes more interactive and is able to be himself.

So we try to keep our time horizon in check. If we focus only on what is required for today, I can smile at what we have. This moment today, now, is all we have and that is enough. We learn to accept what cannot be changed. There are inevitably reminders of the reality of ours and Henry’s challenge. There are plans to be made which are unavoidable. The mind wanders over to the pasture of the future, but we have to herd it back into the fields of the present.

Switching chemotherapy is not a clear cut decision as I think I’d subconsciously hoped. The tumor’s rate of growth suggests that it’s in a pretty aggressive stage. Despite a significant chance the medicines will not have the intended effect, we will proceed with a chemotherapy called Etoposide, a drug previously administered in Henry’s initial stages of inpatient chemotherapy. In this incarnation it will be given given orally instead of intravenously and will be given over a significantly longer duration – three weeks out of a four week cycle. We will begin in a few days.

A tumor growing the way Henry’s seems to be, is a bit like a boulder rolling down a hill. There’s a certain point at which it cannot be slowed regardless of the means. If we’ve passed this point, we may be measuring his time in weeks instead of months. This has been the reality that has been extremely difficult for us to comprehend, even though we have known it to be coming for months and have known of the possibility for almost a year and half. I’m not sure a parent’s mind can digest the texture of daily life without one of their children.

This news came on the same day that another of our little friends with the same cancer as Henry’s passed away. Sophia’s struggle with medulloblastoma was a particularly harsh one. A struggle that puts in perspective how we can feel fortunate for the twists of fortune that ease Henry’s journey. To the Langford’s we wish the peace that comes with knowing they did everything they could for her and the joy at having spent what time they had with Sophia.

Despite Henry’s erratic sleeping schedule and intermittent agitation and moodiness, he has hours of perkiness in between his TV watching and couch time. Seeing him sit up, talk and interact with us, shows us the personality and spark that we so wish for. It’s pure happiness to see.

Thank you all for your notes and gestures of support. For now, we’re taking things moment by moment and want for very little in the way of creature comforts. Our family has been as supportive as we could hope for as have our network of friends and for that we’re immensely grateful.

We should hear today from our oncologist regarding the CT scan. His sleepiness is worrisome to us. It seems the harbinger of his decline and that’s very difficult to accept. We’re of course hopeful that there are other chemotherapies that will make a difference for him.

Anna and Sophie have been great. They are very gentle with Henry and understanding of his erratic moods and demands; understanding of the disparity that exists in what we expect of him versus them. Their laughter and playfulness has lightened the mood and been very welcome and inspires Henry to join in.

We’ve begun an anti-seizure medication called Keppra and we’ve increased his steroid to four times what his recent maintenance dose. This seems to be controlling his vomiting but has not yet piqued his appetite yet. It has started to agitate him and to disrupt his sleep even more – last night he was up for about four hours. This is taking it’s toll on all of us.

We’ve postponed resuming his chemotherapy regimen for the month in order to allow a review of his most recent scan by our doctors in Baltimore. If the tumor is growing, we will opt for an alternative chemotherapy. If it’s not significantly different, we will stay the course.

Tara and I are home today, trying to recuperate physically and emotionally. We feel like sitting and staring at the wall, but being busy is a helpful antidote.

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.

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.

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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.

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.

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.