The last few days have been peaks and valleys of emotion. Henry has been sleeping most of the time, waking for an hour or two at a time, sometimes three or four. When he first wakes he's generally alert and responsive, can converse and is comfortable. We keep him on pain medication to avoid headaches which are the hallmark of the tumor's progression. As he tires, his requests turn to demands and he begins a manic litany of needs which get more and more frequent and unreasonable. This exhausts all of us, especially as sometimes his waking moments are at night.
During these wakeful moments we recall better times with photos and conversation. He still watches some television but his interest in that has waned recently. He does hum, sing or tap to the jingles for his shows, which brings a smile to our faces and makes me strangely content. He is drinking well and still enjoys some of the foods he always has; orange chips, chocolate, mandarin oranges. We spend our time attentive to him, waking or asleep, and to the girls, keeping them occupied and feeling loved.
It is not clear how much time we have with him. I read an account of survival at sea recently. According to the author, rescue must be viewed as an "interruption to the survival journey" meaning that to look for the end is to lose focus on what is required now. For now we will float, focus on Henry and await interruption.
Showing posts with label relapse. Show all posts
Showing posts with label relapse. Show all posts
Sunday, February 22, 2009
Friday, February 20, 2009
Giving and Gratefulness
Henry continues to give and we continue to be grateful.
Yesterday he gave us the opportunity to spend all day surrounded by caring and loving family and friends, gathered in our living room around the fire. He had pain, agitation and discomfort for parts of his day, but with medication he rested, slept and had several hours of calm alertness during which he conversed and entertained. We cried, we laughed and were grateful.
After a blessedly full nights' rest, Henry awoke with complaints of a minor headache. We administered his morphine twice before it finally subsided. He wet his small bed we've moved into the living room and while changing the sheets, he sat with me. He has never been an overly affectionate child. He prefers to sit alone, preferring proximity to touch - but this morning he sat with me quietly. I have longed for this and he obliged me.
I have chosen the mantra of gratefulness of late, focusing on the things we have to be thankful for in the midst of this ... thing. I try to be careful about calling it something ugly or bad. There has been no intention in any of it, sad - yes, evil - no.
Anna had a tough time this morning. Sophie wouldn't go in to school without her either. We've kept the girls home for a time to allow them to normalize themselves again in hopes of sufficiently collecting themselves to do what will help them most of all - routine.
Henry lays sleeping calmly, his small chest heaving rhythmically while the background of Clifford dins in the background. It's a quiet and pain free moment and we're grateful.
Yesterday he gave us the opportunity to spend all day surrounded by caring and loving family and friends, gathered in our living room around the fire. He had pain, agitation and discomfort for parts of his day, but with medication he rested, slept and had several hours of calm alertness during which he conversed and entertained. We cried, we laughed and were grateful.
After a blessedly full nights' rest, Henry awoke with complaints of a minor headache. We administered his morphine twice before it finally subsided. He wet his small bed we've moved into the living room and while changing the sheets, he sat with me. He has never been an overly affectionate child. He prefers to sit alone, preferring proximity to touch - but this morning he sat with me quietly. I have longed for this and he obliged me.
I have chosen the mantra of gratefulness of late, focusing on the things we have to be thankful for in the midst of this ... thing. I try to be careful about calling it something ugly or bad. There has been no intention in any of it, sad - yes, evil - no.
Anna had a tough time this morning. Sophie wouldn't go in to school without her either. We've kept the girls home for a time to allow them to normalize themselves again in hopes of sufficiently collecting themselves to do what will help them most of all - routine.
Henry lays sleeping calmly, his small chest heaving rhythmically while the background of Clifford dins in the background. It's a quiet and pain free moment and we're grateful.
Wednesday, February 18, 2009
Difficult Day
Henry vomited in his sleep again last night and had another mild seizure. He complained all night of headaches that we had difficulty controlling until morning when we'd given him more morphine in 8 hours than we've had to the entire time he's been taking it.
After he was finally able to rest, he slept on the couch for hours, waking pleasantly. This pleasantness quickly turned to irritability and agitation which persisted throughout the evening. I took him up to bed around 6pm and he fell immediately asleep.
It seems clear that we've passed the tipping point of his disease. Previously his headaches have been manageable with small doses of morphine, sometimes even Tylenol. We anticipate some teetering, some easier days mixed with hard, but this difficult reality is beginning to permeate all things.
After he was finally able to rest, he slept on the couch for hours, waking pleasantly. This pleasantness quickly turned to irritability and agitation which persisted throughout the evening. I took him up to bed around 6pm and he fell immediately asleep.
It seems clear that we've passed the tipping point of his disease. Previously his headaches have been manageable with small doses of morphine, sometimes even Tylenol. We anticipate some teetering, some easier days mixed with hard, but this difficult reality is beginning to permeate all things.
Thursday, February 12, 2009
Rare is Precious
Henry has been so, so tired lately. His sleep seems to be getting longer, his days shorter. He spends most of his time on the couch, nibbling and watching his shows, humming to the songs or answering the questions posed by the characters. He is sometimes coaxed into an errand, a painting project or some other off-couch activity, but he fatigues quickly.
Each night when we put him to bed, it seems like we're turning a page in the last chapter, nearing the end of the story. I feel like my kids asking for another book. More. Please more.
The reality of this is becoming more palpable by the day. Our visitors are more frequent, our conversations more urgent, our plans more tangible. In so many ways I feel like we're losing him slowly even now - his body is getting heavier with his eating, hiding his features behind his increasing cheeks. His occasional hobble toward the bathroom is practically his sole exercise. His nap schedule is more regular and lengthy than it has ever been. None of this is typical of childhood. His mental acuity remains in tact and he jokes and his wit is sharp. We feel lucky that his disease has been merciful to us this way.
Each night when we put him to bed, it seems like we're turning a page in the last chapter, nearing the end of the story. I feel like my kids asking for another book. More. Please more.
The reality of this is becoming more palpable by the day. Our visitors are more frequent, our conversations more urgent, our plans more tangible. In so many ways I feel like we're losing him slowly even now - his body is getting heavier with his eating, hiding his features behind his increasing cheeks. His occasional hobble toward the bathroom is practically his sole exercise. His nap schedule is more regular and lengthy than it has ever been. None of this is typical of childhood. His mental acuity remains in tact and he jokes and his wit is sharp. We feel lucky that his disease has been merciful to us this way.
When you were born, my love
A bag of precious gems were poured out to us.
Although they seemed innumerable,
we knew they were not, but refused to count
for they seemed so many and days so plentiful.
As they dwindle, my love
and as I am able to count them - shimmering in my hand,
and am forced to pay out,
one at a time,
to the passing sun,
they seem all the more precious, my love.
I watch the way they reflect the light,
How each is unique,
special, different.
I see my face in the reflection, my love.
And I hope always to find yours looking back.
One day soon,
the last sun will rise to collect its toll.
And I will reluctantly, sadly,
with an open palm
give over what was never mine,
but only lent for too short a time, my love.
I will miss you,
but will reflect lovingly on those gems
that we had the privilege to care for,
to witness and to tend.
For each of those gems have left me richer
than I can have imagined otherwise, my love.
For now, there are but precious few, my love
remaining in our care,
and while we wish for more, my love
We're ever so grateful for the one that is today.
Sunday, February 8, 2009
Grateful for this Day
I am extremely grateful for this day.
Henry slept well, woke happy, and played nicely for sometime. Later in the morning he agreed to come outside to enjoy the temperate day we were given today. We pulled out Truckie and he drove and drove and drove. We took a walk and were warmed by the sun. I couldn't have been happier following him down the street with the girls in the lead on their scooters. We were met by neighbors out enjoying the day and returned to our court to watch the kids play. We had friends and family over to share dinner, again Henry and his cousin and sisters playing on the floor with trains. He eventually tired, but really squeezed the life out of today.
I am extremely grateful for this day of sun and warmth, laughter and smiles, kids playing and family.
Saturday, February 7, 2009
Fields of the Present
Right now as I type this I'm sitting on the couch next to Henry. He's laying down watching Dora. He has just taken his own medicine, which, for the most part, he insists on doing himself. He slept fairly well last night - no anxiety laden interruptions, but he did wake several times during the night, almost sleep-talking, saying the sweetest things. His mind is still very keen. He notices small things and remembers details that confound Tara and me.
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.
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.
Wednesday, February 4, 2009
Change of Plan
The CT Scan was read yesterday and compared with Henry's prior scans, notably the one from December. The one spot noticeable then has doubled in size, clearing up any doubt about the efficacy of Henry's current chemotherapy.
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.
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.
Tuesday, February 3, 2009
Resting
Henry slept almost all night last night with a little help from Ativan. He woke at 6:45 this morning in a good mood and watched TV for a couple of hours. He asked to be alone, I took him upstairs and he dropped quickly off to sleep.
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 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.
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.
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.
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 6, 2009
Slipping
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.
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.
Tuesday, December 30, 2008
Routine Scab
Something has changed recently. I think maybe it's because of Henry's recent episode, which we've deduced with the oncologist, was probably a seizure. Less threatening, but no less frightening. He may have them again but they are likely benign. A relief.
But something is different. I think that seizure out of the blue has removed the scab that routine had grown back over this wound. We're openly bleeding again and it's painful. Every action I take right now is weighted with the perspective of what's to come and I wonder what life will be like in the coming year. When Henry looks at me, I try to drink in his eyes. My stomach twists in knots. I try on a smile, to forget, to get wrapped up in the kids activities again, but the weight is heavy.
I try to recall my own words and thoughts and perspective of just a few weeks ago. Focusing on the moment here and now - there's plenty of time to grieve later. But the elephant is standing in the middle of the room and it's difficult to see around.
I worry for Tara, I worry for the girls. Will I be what they need during this time?
This morning I was lying in bed next to Henry. We were just trying to wake up a bit. It was early. I just reached up to touch his arm.
But something is different. I think that seizure out of the blue has removed the scab that routine had grown back over this wound. We're openly bleeding again and it's painful. Every action I take right now is weighted with the perspective of what's to come and I wonder what life will be like in the coming year. When Henry looks at me, I try to drink in his eyes. My stomach twists in knots. I try on a smile, to forget, to get wrapped up in the kids activities again, but the weight is heavy.
I try to recall my own words and thoughts and perspective of just a few weeks ago. Focusing on the moment here and now - there's plenty of time to grieve later. But the elephant is standing in the middle of the room and it's difficult to see around.
I worry for Tara, I worry for the girls. Will I be what they need during this time?
This morning I was lying in bed next to Henry. We were just trying to wake up a bit. It was early. I just reached up to touch his arm.
"Dad?"
"Yes, Henry?"
"That's why it's good that we're nearby."
"Why's that Henry?"
"Because that way we can touch each other. That's why it's good to be nearby."
"Yes, it is Henry."
Friday, December 26, 2008
A Beautiful Day
Christmas day here was a beautiful one for many reasons. Despite dispatching a 24 hour flu inside of 6 hours, Henry enjoyed himself terrifically. He saw that we had an early start, at 5:15. The girls followed by 6:30 and the present opening commenced. We started with the stockings from Santa and finished with the remainder after breakfast.
Henry responded to each present with "that's what I always wanted!" We had enough gifts for several Christmases. During presents Henry was a bit lethargic and fussy. Soon afterward he vomited. He needed several trips to the bathroom as well. We resigned ourselves to make the most of a Christmas with him being sick.
After a nap however, he was a new person. He arose and after our family arrived, perked up quite a bit. He spent the afternoon playing with his cousins, running around outside, shooting darts and generally being a rambunctious little boy. It was a pure delight to see.
Today was a perfect example of how each day surprises us right now. From being in the Emergency Room the other day to waking up on Christmas sick and ending the day laughing and jumping.
I put Henry to bed last night and rubbed his back as he fell asleep. He said, "Dad, how long are you gonna stay here?" I just didn't want to let this Christmas day end. "I just want to sit with you for a while," I said. "That's OK with me, either way, whatever you want." And I rubbed his back until he fell asleep on Christmas night, his sisters laying in the rooms just across the hall after a beautiful day.
Wednesday, December 24, 2008
Thankful for Another Day
It's a quiet morning here at the Scheck House. Henry is watching TV. The girls are at their Grandmother's in Frederick and we are getting a late start after a very, very late night. We took him to the Johns Hopkins Emergency Department last night after experiencing stroke-like symptoms; he began vomiting while out with his sisters and a family friend at dinner. I came to retrieve him and found him doing fine, however on the way home he started to slur his speech badly and I could hear the drool pooling in his mouth as he spoke. I phoned Tara who had just arrived home and once there ourselves we observed him for a bit.
We watched for just a couple of minutes and began vomiting again, after which he became less responsive and appeared not to be able to move his left arm. Drool began coming out his mouth and while he could answer my questions at times, he was unintelligible or didn't make any sense.
During these last few weeks, and based on his feeling so good, we've begun operating under the assumption that Henry's last days would be readily seen coming - that he would have a slow and steady decline, during which we could comfort him and his sisters, give us the mental time needed to prepare. Suddenly, dozens of spontaneous questions came to me. "Is this how it's going to happen?" "Have I already had my last coherent words with my son?" "Who should we call?" "What do I say to the girls?" "Should we try to get help or let this take its course?" "Do we go to Hopkins or Washington County?"
During this episode, the girls came home from dinner to find us in tears and looking completely frightened. We've had discussions with them about things, but this caught everyone off guard. Thank goodness for Miss Lindsey - she was like a third, very stable parent to the girls while Tara and I sorted through the myriad emotions and decisions we were faced with.
We decided to head to Hopkins directly. We packed up the car, placed a couple of phone calls to the doctors and gave Henry some anti-nausea medication. The Hospice nurse had responded to my earlier call and was there to help us with the medicine. Upon heading out, Henry's symptoms began to subside, much to our great relief. He began speaking clearly again and looking himself. We left the girls with their grandparents and arrived in the ER about an hour later to find our oncologist waiting for us.
The comfort that Tara and I feel in our oncologist's presence is palpable. In tough situations, he is empathetic, knowledgeable and balanced. This evening, his being there ensured us of not only an effective, but brief stay. He sat with us, discussed options, played with Henry and read the CT scan once it came back. One of Henry's oncology nurses came down from the floor to visit with a coloring book and a sweet note. The child life staff member came to bring him toys.
The news from the CT scan was different than we expected. We expected this all to be pressure related from a growing tumor site. Instead we discovered that Henry had a small hemorrhage in his brain, likely as a result of the weak vessels the tumor creates as it grows. He had complained of a intermittent headache all day today in roughly the same spot - the right front of his brain.
We feel like we dodged a major bullet last night. There's nothing preventing this from happening again. There's nothing to say that it won't be worse. Or that it won't happen again. We forced to accept that any day may be the day, any hour the hour. In my head, I've imagined us all being at home around him, holding him, showing that we love him, talking about good times. I need to let it go. This is not about a romantic memory that we can hold on to forever. This is about making each moment count, making each minute one that is infused with love. If we can do this, it will matter less how or when.
So we wake up this morning, grateful for another day. Grateful for another smile, another laugh, just a little more Henry to be experienced. He spoke lovingly to his sisters and Grandmother on the phone this morning. He's watching his TV shows and eating scrambled eggs, with "just a little melted cheese and a little salt." Tara and I are tired, but not really caring much about it and are looking forward to reuniting with the girls and a holiday at home with our family.
We watched for just a couple of minutes and began vomiting again, after which he became less responsive and appeared not to be able to move his left arm. Drool began coming out his mouth and while he could answer my questions at times, he was unintelligible or didn't make any sense.
During these last few weeks, and based on his feeling so good, we've begun operating under the assumption that Henry's last days would be readily seen coming - that he would have a slow and steady decline, during which we could comfort him and his sisters, give us the mental time needed to prepare. Suddenly, dozens of spontaneous questions came to me. "Is this how it's going to happen?" "Have I already had my last coherent words with my son?" "Who should we call?" "What do I say to the girls?" "Should we try to get help or let this take its course?" "Do we go to Hopkins or Washington County?"
During this episode, the girls came home from dinner to find us in tears and looking completely frightened. We've had discussions with them about things, but this caught everyone off guard. Thank goodness for Miss Lindsey - she was like a third, very stable parent to the girls while Tara and I sorted through the myriad emotions and decisions we were faced with.
We decided to head to Hopkins directly. We packed up the car, placed a couple of phone calls to the doctors and gave Henry some anti-nausea medication. The Hospice nurse had responded to my earlier call and was there to help us with the medicine. Upon heading out, Henry's symptoms began to subside, much to our great relief. He began speaking clearly again and looking himself. We left the girls with their grandparents and arrived in the ER about an hour later to find our oncologist waiting for us.
The comfort that Tara and I feel in our oncologist's presence is palpable. In tough situations, he is empathetic, knowledgeable and balanced. This evening, his being there ensured us of not only an effective, but brief stay. He sat with us, discussed options, played with Henry and read the CT scan once it came back. One of Henry's oncology nurses came down from the floor to visit with a coloring book and a sweet note. The child life staff member came to bring him toys.
The news from the CT scan was different than we expected. We expected this all to be pressure related from a growing tumor site. Instead we discovered that Henry had a small hemorrhage in his brain, likely as a result of the weak vessels the tumor creates as it grows. He had complained of a intermittent headache all day today in roughly the same spot - the right front of his brain.
We feel like we dodged a major bullet last night. There's nothing preventing this from happening again. There's nothing to say that it won't be worse. Or that it won't happen again. We forced to accept that any day may be the day, any hour the hour. In my head, I've imagined us all being at home around him, holding him, showing that we love him, talking about good times. I need to let it go. This is not about a romantic memory that we can hold on to forever. This is about making each moment count, making each minute one that is infused with love. If we can do this, it will matter less how or when.
So we wake up this morning, grateful for another day. Grateful for another smile, another laugh, just a little more Henry to be experienced. He spoke lovingly to his sisters and Grandmother on the phone this morning. He's watching his TV shows and eating scrambled eggs, with "just a little melted cheese and a little salt." Tara and I are tired, but not really caring much about it and are looking forward to reuniting with the girls and a holiday at home with our family.
Monday, December 22, 2008
Christmas Fun
Henry enjoyed a holiday visitor today. His cousin Colin visited for the better part of the day, his family returning from Switzerland for the holidays. We enjoyed playing cars, fireman and decorating gingerbread men. It was fun to have a playmate at home, especially a boy! We'll see them again for Christmas Day and Henry's already looking forward to his return.
Sunday, December 21, 2008
Christmas Memories
Today was another really wonderful day. I'm compelled to document these days of wonder because I suppose I will one day look back on them and wish for them. I returned my mother to the airport today after a really nice visit. The kids made her feel amply missed before she even left.
I returned home to a strangely empty house, but only for a few moments, as Tara and the kids came into the door with Christmas dinner fixings. The afternoon became a relaxing time with a few games and the kids occupying themselves effortlessly (how often does that happen?). Henry is enjoying video games more and he's been playing Monster Truck 4x4 and getting pretty good at it. He enjoys it primarily because you can pick your truck and they include firetrucks and "andylances".
The girls enjoyed using Henry's matchbox car track and shooting candy from the launchers, trying to aim at bowls as targets. I can't say that I didn't help come up with the idea and also had a hard time keeping from making suggestions for additional elaboration.
We sat down to dinner and laughed and told stories. The conversation spilled into family members, our history, kids births, weddings - we got out picture albums and reviewed them thoroughly. It was, really, a perfect evening. We returned to the living room for some more monster truck racing in front of the evening's fire.
After one yawn too many, we shuttled the kids up to bed for the girls' remaining days before holiday break. Henry was practically asleep in the chair, but pleasant nonetheless. Everyone went to sleep without a peep. I can't explain the immense gratitude that I have for this day and the people I spent it with.
Friday, December 19, 2008
Golden Days
I just laid Henry down to sleep tonight. We've been so thrilled at his energy of late that he's not only kept us busy, but it's been difficult to find the time to write before reaching the point of exhaustion. There are little bits of sweetness scattered among the routine events of the day, but today was such a quintessential Henry day that I felt I had to sit down to record it.
We started off pretty slow, playing on the floor with his matchbox car raceway. This is one of those toys that anyone can enjoy, like a modern day Rube Goldberg Machine. It provides hours of fun for the kids of all ages in our house (read - me too!). Henry and I began discussing the rest of the day. His regular weekly time at the Little Gym was today and we'd been wanting a mutual hair cutting. He suggested then that Grandma Linda, who he knows loves her coffee, could get a cup at the shop next door to the barber.
So that's just what we did. Henry got his hair cut for the first time since he turned three, sitting right next to me in the barber shop. It may seem silly, but it was such a moment of pride for me. He sat incredibly still, conversed with the barber, and received two lollipops for his efforts. We joined Grandma Linda for coffee and chocolate milk for a time while we awaited our time at the Little Gym. After imbibing we strolled down under the awning to avoid the rain. Henry had recalled earlier in the day that the awning existed and before even leaving the house, suggested that we would not need an umbrella. He had the whole thing very well planned out.
His time at the Little Gym was typical of his recent visits. He yelled, jumped, became adventurous with only a little prodding and had the time of his life just being four. Afterward, although cold to the bone for the incessant rain, we made our way over to Chick-fil-a. A day with Henry just wouldn't be complete otherwise. I ran a quick errand while he and his Grandmother had a nice lunch to complete our morning's adventure.
We got home and had plans for a nice quiet time before the girls and their whirlwind of papers and bags came in the door from school. I had forgotten a promise to get him over to his old daycare for a time. Before our coats were even off, we packed back into the car and dropped by for a mini reunion with his little friends and far-too-kind teachers. They'd shopped for little painting projects for him. He gave them all sweet hugs and then we proceeded to play and watch their Christmas train for a while. I tried to talk him into leaving to get the girls off the bus but, to my surprise, he opted to stay and play.
I retrieved him after about an hour of what was described to me as a pretty good time and which included painting, snack and some Thomas the Tank Engine trains. We came home and elected to exchange our Christmas presents with Grandma Linda after which we had a pretty quick but yummy dinner, Henry eating primarily the Chex Mix that he and Grandma had made. This mixture, by Henry's account, is 'the best'. Although each present he opened elicited a "that's just what I wanted" (ever the gentleman), the hit of the evening had to be the gum ball machine. Thank you Grandma!
So it was a long but fun filled day, very representative, in its parts, of all of our recent golden days. Busy and fun times, filled with bits of the preciousness which are Henry's looks and quips, his growing maturity coming through in unexpected ways, and us trying to take it in its fullness.
We started off pretty slow, playing on the floor with his matchbox car raceway. This is one of those toys that anyone can enjoy, like a modern day Rube Goldberg Machine. It provides hours of fun for the kids of all ages in our house (read - me too!). Henry and I began discussing the rest of the day. His regular weekly time at the Little Gym was today and we'd been wanting a mutual hair cutting. He suggested then that Grandma Linda, who he knows loves her coffee, could get a cup at the shop next door to the barber.
So that's just what we did. Henry got his hair cut for the first time since he turned three, sitting right next to me in the barber shop. It may seem silly, but it was such a moment of pride for me. He sat incredibly still, conversed with the barber, and received two lollipops for his efforts. We joined Grandma Linda for coffee and chocolate milk for a time while we awaited our time at the Little Gym. After imbibing we strolled down under the awning to avoid the rain. Henry had recalled earlier in the day that the awning existed and before even leaving the house, suggested that we would not need an umbrella. He had the whole thing very well planned out.
His time at the Little Gym was typical of his recent visits. He yelled, jumped, became adventurous with only a little prodding and had the time of his life just being four. Afterward, although cold to the bone for the incessant rain, we made our way over to Chick-fil-a. A day with Henry just wouldn't be complete otherwise. I ran a quick errand while he and his Grandmother had a nice lunch to complete our morning's adventure.
We got home and had plans for a nice quiet time before the girls and their whirlwind of papers and bags came in the door from school. I had forgotten a promise to get him over to his old daycare for a time. Before our coats were even off, we packed back into the car and dropped by for a mini reunion with his little friends and far-too-kind teachers. They'd shopped for little painting projects for him. He gave them all sweet hugs and then we proceeded to play and watch their Christmas train for a while. I tried to talk him into leaving to get the girls off the bus but, to my surprise, he opted to stay and play.
I retrieved him after about an hour of what was described to me as a pretty good time and which included painting, snack and some Thomas the Tank Engine trains. We came home and elected to exchange our Christmas presents with Grandma Linda after which we had a pretty quick but yummy dinner, Henry eating primarily the Chex Mix that he and Grandma had made. This mixture, by Henry's account, is 'the best'. Although each present he opened elicited a "that's just what I wanted" (ever the gentleman), the hit of the evening had to be the gum ball machine. Thank you Grandma!
So it was a long but fun filled day, very representative, in its parts, of all of our recent golden days. Busy and fun times, filled with bits of the preciousness which are Henry's looks and quips, his growing maturity coming through in unexpected ways, and us trying to take it in its fullness.
Tuesday, December 16, 2008
Santa Cow
On one of our many trips to Chick-fil-a recently, we noticed that they had a Kid's Night promotion with their mascot, the cow, dressed up as Santa - and it occurred on a night when Grandma Linda was here too. Cookie decorating and storytelling were among the evening's fare, as well as reduced price kids meals. This was an event we could not pass up. Henry was keen on bringing his very own mascots who had to be in the picture taken with his camera. Altogether, pretty cheap entertainment.
Saturday, December 13, 2008
Friday, December 12, 2008
Blessed Holiday Season
The confluence of several things these last two weeks have kept the Scheck family here on the ropes. We had a rough cold sweep through the house leaving only Anna untouched. Sophie and Tara had the worst of it and fortunately Henry's immune system fought it off pretty well. It did have us sleepless for some time. Sophie's birthday is actually today, we had her party this past Sunday with all her friends at The Little Gym, who, I have to say, throw a wonderfully complete and worry-free party. Our big girl is now seven and as bouncy as ever. We just returned this evening from a dinner out at a local hibachi grill - a favorite entertainment spot. The usual Christmas mayhem has kept us hopping too - gifts, planning, crafts, cards - all wonderful traditions that have kept us busy and thinking wintry thoughts.
In the few hours left recently that haven't been consumed by the above, have been spent in recovery trying to keep up with an immensely energetic Henry. He looks great, feels great and is literally running around the house. He has resumed his weekly Little Gym class which he enjoys so much that he completely loses himself in it, screaming, running and throwing his hands in the air. It is my absolute favorite time of the week with him. It's so readily apparent that he is just being a kid. And while he still doesn't have the balance of a normal 4 year old, he runs and jumps and crawls on everything in sight as well as joining in with their group activities.
All of this December has been wildly distracting and, aside from our colds, very upbeat. Even the visits from the hospice staff have become a highly anticipated event as they, as much as Henry, have enjoyed playing and building rapport with him during this amazing time. Tara and I often comment to each other that we've simply never seen him look so happy and healthy. It's really a tremendous irony and one we're extremely grateful for. Not infrequently do I think about the wonders of modern medicine and feel unable to fathom what it has afforded us as a family, not to mention some of the best time of Henry's life.
So this weekend, we will venture out, weather permitting, to cut a real Christmas tree, in contrast to last year. We couldn't have live plants in the house due to Henry's weakened immune system and had to forgo one of our favorite traditions. We will trim the tree, hopefully just in time for Grandma Linda's arrival for a pre-Christmas week of visiting. In the meantime, we'll continue to ride the goodwill of the season and relax with each other, knowing it is a true blessing.
 |  |
In the few hours left recently that haven't been consumed by the above, have been spent in recovery trying to keep up with an immensely energetic Henry. He looks great, feels great and is literally running around the house. He has resumed his weekly Little Gym class which he enjoys so much that he completely loses himself in it, screaming, running and throwing his hands in the air. It is my absolute favorite time of the week with him. It's so readily apparent that he is just being a kid. And while he still doesn't have the balance of a normal 4 year old, he runs and jumps and crawls on everything in sight as well as joining in with their group activities.
All of this December has been wildly distracting and, aside from our colds, very upbeat. Even the visits from the hospice staff have become a highly anticipated event as they, as much as Henry, have enjoyed playing and building rapport with him during this amazing time. Tara and I often comment to each other that we've simply never seen him look so happy and healthy. It's really a tremendous irony and one we're extremely grateful for. Not infrequently do I think about the wonders of modern medicine and feel unable to fathom what it has afforded us as a family, not to mention some of the best time of Henry's life.
So this weekend, we will venture out, weather permitting, to cut a real Christmas tree, in contrast to last year. We couldn't have live plants in the house due to Henry's weakened immune system and had to forgo one of our favorite traditions. We will trim the tree, hopefully just in time for Grandma Linda's arrival for a pre-Christmas week of visiting. In the meantime, we'll continue to ride the goodwill of the season and relax with each other, knowing it is a true blessing.
Subscribe to:
Posts (Atom)
Posts
