Thursday, February 26, 2009

Celebrating Henry

We will celebrate Henry's memory on Tuesday, March 3rd. Please see the details below.

9am - 11am Family to receive visitors
11am - 12pm Memorial Service

Cortland Mansion
19411 Cortland Dr
Hagerstown, MD 21742

Afterward we will gather to visit and will have light fare. Please wear happy clothing. Henry will be present only in memory and our hearts. We have donated his body with the hope of furthering understanding of Medulloblastoma. We would love to have your children there, but understand if you decide otherwise. We will have set aside a separate space for them with toys, books and activities to be tended by volunteers.

In lieu of flowers, we would ask that donations be made to one of the following organizations from whom we had so much physical, emotional, medical and personal support.

The Children's Oncology Group at Johns Hopkins

The Believe in Tomorrow Foundation

Alex's Lemonade Stand Foundation

St. Baldrick's Foundation

It is becoming more apparent moment by moment that Henry touched many lives. Thank you for your anecdotes and inspiration, love and kindness. We'd love to hear of a special time or memory you have about our Henry and will have a collection place for anecdotes at the service.

Wednesday, February 25, 2009

Henry Keating Scheck

July 22, 2004 - February 25, 2009

Henry died this morning at 10:30a. Without fanfare or pain, his face went ashen as Tara and I sat on either side of him holding him and he gasped his last. We are surrounded by family and their love, perhaps the only thing that makes this bearable.

Please allow us the time to grieve privately for a few days. Calls right now would be overwhelming. Details on services will follow. Thank you all.

How can I see tomorrow without you?
My eyes are blurred for tears.
I know my travels must continue,
The hours will seem like years.

How can I feel tomorrow without you?
My heart aches, my head pounds.
Time will pass, they say it heals,
I'm not sure I like the way that sounds.

How can I love tomorrow without you?
Each step I miss you so
I hold your memory close to me,
I cannot let you go.

The secret lies in the love you gave
The wondeful times we had
Your fire will burn to pass these on
In me, my love - your Dad.

Short Breaths

Henry's breathing began to be more rapid and labored last evening. His throat and chest have a rattle now when he breathes. Sometimes he has the strength and awareness to clear it, but that is now infrequent.

We called the hospice nurse to visit. This is new and we wanted to make sure we are doing all we can at each moment to ensure his comfort. We all agreed that he seems comfortable for now and she advised us on measures to take should that change.

Each step right now is confusing, difficult and painful. We're in the akward position of wanting more of Henry but not wanting him to have to endure this for long. I remind myself we could rely on the hospital to help us through this, but to have him at home now has been so important to us all.

Tuesday, February 24, 2009

Wakeful Time

Henry continues to rest quietly for the most part. Occasionally he complains of a headache and the fact that he does so calmly with words tells us he is not in acute pain. We keep him on a steady stream of medicines for any of that pain.

He does arouse for brief periods here and there during which we can administer medicines and tell him we love him. He signs 'I love you' back - what a blessing he knows how to do that. He'll blow kisses. He excuses himself after each burb - which have become so very frequent - sometimes even in his sleep. He'll ask for juice with a sweet 'yes, please'. If he's awake for any duration, we begin reminiscing about his life to help him recall.

He had a very wakeful period today starting at about noon. He decided he wanted ice cream and sat up on Tara's lap eating. He appeared tired and we laid him back down only for him to say, "I wanna sit in Daddy's lap now."

We sat together and he ate mandarin oranges (or as he's says 'Mandarinin'). For a time we concluded he thought he was in the hospital, requesting to see the menu and insisting that he wanted to order himself. At the moment this began we were recalling the food service worker, Ms. Eunice, that was always so caring, taking Henry's orders and bringing his food.

For a time he also hallucinated about being back at daycare, this spurred on by a call from there with good wishes and thoughts from the children he calls his friends and the teachers he loves. He talked about rearranging the cots for nap and putting them away in the closet. I'm not sure if he was seeing this as he recalled it happening or if his capacity to relate memories now just takes place in the present.

After a time these visions became irritating, as if someone was bugging him in a bad mood. He threw his blankies 'down the stairs' but then cried that he wanted them back. They were just at the foot of the bed. At one point he seemed asleep, turned over toward me, opened his eyes and crowed like a rooster. These continued to become less pleasantly entertaining and more disturbing and upsetting to him so we medicated him for agitation and sleep. It was so nice and unexpected to have additional meaningful conversations with him.

Monday, February 23, 2009


Henry has slept for the last 20 hours, rousing once in the middle of the night to take a bit of morphine for his headache. We had tiny one-word conversations, telling him about recent visitors and notes from old friends. I sang the song I sing to him at night time and he completed the last word as he always has. We told him over and over we loved him.

Tara and I slept one on either side of him in his nest in our living room. I stoked the fire before laying down and the glow was as much heart warming as it was physically comforting.

Once again we find ourselves grateful for the peaceful manner in which Henry is able to painlessly rest. His agitation and mania seem to have mercifully subsided and he is simply sleeping. His breaths are sometimes quick and sharp, but mostly steady and very slow. There is no tension in his face.

The girls left for school this morning and each kissed him. Such good girls - so brave. We've spent a lot of time with them making sure they know they are loved and safe. We had a cathartic evening of crying around Henry last evening. Us, my mother, Tara's parents. It needed to happen. It was a good release for all and the girls seemed better for it today.

Sunday, February 22, 2009

Keeping Vigil

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.

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.

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.

Saturday, February 14, 2009

Conversations at Bedtime

Laying with Henry at bedtime can be humorous and revealing. It's so interesting to understand what is going through his head. Most of the time these tidbits go unremembered because they're so often between midnight and six in the morning and they cannot be recalled during wakeful coherence.

I lay down with him tonight to put him down.

"Did you have a nice Valentine's Day Henry?"
"Yes, there was only one pinwheel." (referring to their gifts - he got the pinwheel)

-- long pause --

"Do you know why they call 'sugar snap peas' 'sugar snap peas'?"
"Why Henry?"
"Because they 'snap'."
(chuckling under my breath) "Good call man"

-- another long pause --

"I just don't know how those stink bugs get in the house..."
"Me either"
"They stink"
"They sure do"

-- long pause, I think he's asleep --

"Sweet dreams Daddy"
"You too Henry, Good night"

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.

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.

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.

Tuesday, February 3, 2009


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.

Monday, February 2, 2009


It's been a couple of days since Henry's seizure and while his mental acuity is returning to normal, physically he's not feeling himself. His energy level is considerably lower. He wants to be more active than his body will allow right now. Several times today, he's been motivated to play, and in fact has begun activities, only to resign moments later to the couch.

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.