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.


"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.

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.
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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.

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.
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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.

Monday, December 1, 2008

Strange Existence

We had a lovely Thanksgiving with lots of wonderful visitors and terrific food and just a generally relaxing time. This is the time of year when I usually begin to wonder what I was doing the year prior at the same time, this year has been particularly easy to remember as were in the hospital for a good part of the last three months of the year and generally coming to grips with our new reality.

Our lives right now are not easily explained. We often look at each other wonder if the situation which weighs on us is real. Neither Tara nor I can recall a time when Henry felt better than this, perhaps but for the time immediately after his treatment ended. His mood, energy and outward health is so comforting it easily lulls into a dreamlike state of being - heightened awareness of the specter of what is to come and deeply appreciative of the ease and joy of life right now. I would never have been able to imagine coping with this state of things as well as we seem to be able to right now. I feel at times like I'm crossing a lake of thin ice, steady for now, but very high risk of slipping and crashing through.

Henry's days now are filled with playing video games, Christmas projects, painting, TV and, yes, eating. His weight seems to have stabilized at just under 50 pounds. Lately he's particularly enjoyed scrambled eggs, cashews and biscuits ("I really like that bread Daddy!") as well as Hershey Kissses. We have been slowly decreasing his steroids on doctors orders and he's been fine for it. He's taking his chemotherapy like a champ - only one more day of round two to go. We had some slight anxiety over the weekend as he complained of a headache most of the day, but it was light and did not renew itself the following day.

Another disarming change with Henry has been his willingness to participate in household chores and with the family. He independently set the table the other night with no prompting from Tara or me. He's enjoying playing with his sisters again and doesn't require me immediately at his side. It's really like he's playing catch up for all the developmental and behavioral delays that he experienced over the last year - end enjoying it. It's such a truly wonderful thing to be able to observe in him.