Friday, October 31, 2008

A Late But Happy Halloween

The fireworks were spectacular and now we're tired and headed back to the village.

Happy Halloween

What a parade. The headless horseman was the lead with both villians and friends following. We've trick or treated and are awaiting our fireworks finalé.

Our Girls

Waiting for the photo shoot.

Worth the Wait

You Can't Rush Beauty

So after some beauty rest for all this afternoon, it's off to Downtown Disney for the girls' beauty makeovers and costumes. So Henry and I are people watching and grabbing dinner before the big reveal.

Break Time

After a great morning, including 'It's a small world', Pirate ride and Neverland ride. We're headed back for lunch and a rest as tonite is Mickey's Not So Scary Halloween Party and parade.


We call Sophie 'Tigger' 'cause she can't sit still - now she met the real deal. She and henry both bounced with Tigger this morning.

Our Ride

Disney music playing, cool morning, no crowd and smiles all around. It looks like a beautiful day!

On the Tram

Everybody's excited!

Gettin' Close!

Day 2

We had a short night and a long fun day ahead. For now it's breakfast and rushing to make sure we don't forget anything.

Thursday, October 30, 2008


After waking up we took a walk to the Gingerbread House for dinner. On the way we saw Mrs. Clause who said Santa was waiting for us after we eat!

Surprise After Surprise

Just waiting outside for a few minutes this evening, we were surprised with a cookie cart and a horse carriage. A train comes by all evening for rides - all of this literally right outside our door. It's magical.




Ice Cream Break

The girls couldn't wait!

Our Crib

These are our digs for the week. We're unpacking and having a little downtime. The girls are wired & Henry is tired. The people are wonderful, the resort is phenomenal and the weather is perfect.


It's Winter Wonderland today here. Christmas music Is palying over the loudspeakers everywhere. Our first stop was the ice cream shoppe for lunch.

Check In

We're here!! Grabbing lunch and then getting settled.

Off to GKTW

And the bags...and the car...and on the way!

Greeter Found!

And Landing...

Early morning means early nap...but we're here. Next step, find the greeter, get luggage and the car!

Ready for Takeoff!

Henry's munching chips and checking out all the cool airport traffic.

At The Gate

At the well decorated Southwest gate to Orlando. Happy Halloween! Note the Mickey Candy Corns.

Breakfast Stop 2

Breakfast stop and we're on the road!

We're off!

A wonderful sendoff from family and friends. Henry has said - this is gonna be fun - about 100 times and we're only 5 minutes from home! Breakfast stops at Starbuck's and McDonalds....

Wednesday, October 29, 2008

Make A Wish

Tomorrow we leave for our trip to Orlando. It's an understatement to say that we're all excited. Henry continues to feel better every day, and we're more and more optimistic that this will be a magical time for him. Where better to look for magic than the Magic Kingdom?

Many many thanks to the Make-a-Wish Foundation for putting this trip together for us. What a truly fabulous group of people and resources.

Technology willing, we hope to update the blog remotely, so keep checking in!

Tuesday, October 28, 2008

One Day at a Time

After fiddling with doses of medications for several days and finishing with his chemotherapy, a pattern seems to be emerging to Henry's mood. He sleeps pretty well overnight and has a solid nap in the afternoon. He's happy in the morning and his anxiety level has dropped a bit, allowing us to give him fewer medicines to ease his tension. Since his chemotherapy has finished, we're only administering an increased dose of steroids and some anti-nausea medication as needed.

His appetite has improved significantly, extending to chicken nuggets (Chick-fil-a, of course) and pancakes. This along with sleep is a good cycle for him to be in at present bringing a bit more energy and mood regularity. He can be engaged with play for a few hours a day, but after a while it seems a heavy effort for him. He can be comfortable most of the time either watching TV or listening to stories. He's quick to let us know when he's ready for bed.

Over this past weekend we had a visit from my mother and brother from Kansas. It was wonderful to have their presence in the house as we spent some wonderful time together. Henry enjoyed seeing them both and quickly rekindled his relationship with his Grandmother who's spent so much time here caring for our family.

Tomorrow we venture back to Baltimore for a follow up clinic appointment to check his status before our trip. At the beginning of the week, we were highly uncertain of the value of the trip for him with his state of being, but are very encouraged by the recent change. It lifts his mood and our spirits. So we're planning to go on our trip still and are hoping to create some long lasting memories of quality family time.

Tara and I want to thank each of you who've offered any form of support to us right now. Our energies are consumed by keeping our family on course and that energy comes from the love we feel from our friends and family.

Saturday, October 25, 2008

Enduring Love

Over the last couple of days Henry's prevailing mood has been one of anxiety. We've begun his medicines and while we can't be certain, it's seems its been a signal to him that he's sick again. He cries and refuses the medicines and it's only with much coaxing and help from lorazepam that we're even able to get them into him. We haven't mentioned his 'cancer' per se, as we imagine that will imply the hospital and would therefor frighten him.

His comfort has been our presiding principle in this journey. We don't want him to be in any pain, we don't want him to be afraid. While we'd love for him to be energetic and playful all the time, it's simply not his reality right now. He sits a lot; stares out the window or blankly at the television. He picks at his mouth, habitually peeling dry bits of skin. He nibbles at his food sifting through his chips to find the ones that have the most barbeque on them.

When he does perk up it's like a ray of sunlight breaking through the clouds. This morning he finally played with his sister without either Tara or I nearby. It seems he requires our proximity. Of course, we feel similarly - one of us has been sleeping next to his bed each night - but it's not a sign of well being, but another sign of anxiety. For about an hour, he and Sophie played 'dolphin'. Her in the tub, Henry is the 'owner'. I'm not sure entirely what the game consists of aside from directing one another, but they enjoy it and that's fine by me.

We put our time and energy into so many things in life. When something like this happens, layers and layers of the less important things are peeled away. Folks are offering anything we need and honestly it's the care and friendship that's extended with each supporting word that we find most supportive right now.

In the coming days, weeks and hopefully months, we will strive to keep our eye on keeping Henry comfortable and showing him the love of his family and friends. In that interest we will attempt to parse out what truly matters. We've already been made to put aside our expectations of a healthy, strapping teenage boy coming in from school, we've had to discard our views of what childhood should mean to kids, and now we tentatively lay down our hopes for painless days ahead. These waves of loss, while difficult to weather, only come from an ocean of abundance. While we have and will lose much, we will hold on to what really matters - our enduring love for one another.

Wednesday, October 22, 2008

Difficult Days

Today we met with the oncology team in charge of our care. The six of us huddled in a tiny room, Henry in the middle, ears mercifully covered with headphones watching TV, as we discussed his future. After questions, explanations and tears, we settle on giving Henry an oral chemotherapy to slow the growth of his cancer, steroids to lessen the swelling in his brain and improve his appetite as well as his general well-being, and anti-nausea medication for any side effects, which should be few. All in the name of keeping him comfortable for the duration.

The last couple of days have been difficult to describe. We've been trying to manage a couple of sweet girls dealing with their brother's terminal illness and who are doing their best to cope. Tonight we began the medicines that we are hoping will keep our little boy happy for just a little while longer. It took us over an hour to administer and Henry vomited as we gave his last dose, leaving Tara and I resigned to try again tomorrow.

Some valuable distraction is being provided as we still plan to take part in Henry's Make-a-Wish trip, which has been scheduled for some time now over the Halloween holiday. We are going to Disney and all are excited by the prospect.

We have both our strong and weak moments, but have been focused on providing the best and most loving care for our family. Thank you for your thoughts and prayers. The comfort from family and friends has been welcome and for that we're very grateful.

Tuesday, October 21, 2008

Life is Fragile

We returned home late last evening after Henry's MRI at Hopkins. We got all the kids down and the phone rang with the call that would confirm our worst fears. The cancer which Henry has fought over the past year has begun to return over his brain.

We've known the odds since last October, only one in four make it out of this. Henry's response to the treatment and his recovery afterward has been astounding, leaving us hopeful. But aggressive cancers get aggressive treatments, meaning that not much, if anything, has been left on the table to try. We meet with our oncologist tomorrow to discuss what our options are. Whatever they are, we know we want Henry to be as comfortable and happy as possible.

For those of you who interact with our children, please speak gently. Tara and I will be discussing this with them today. Their actions and words will need to be listened to with great understanding. We ask that you provide them that.

As for Henry, he is feeling good right now. We have many questions which we hope to have answered tomorrow. For now, we begin to take one step at a time down a path which we hoped to avoid. Not having that option now, we will be deliberate and focused on each day, each step.

Sunday, October 19, 2008

Roller Coaster

Over the last week and a half, Henry's not really been feeling great. He's been trembling and shaking. While a month ago we felt as if his appetite was gaining ground, recently he's back to eating bits of potato chips. He's been vomiting occasionally as well. These kinds of things make parents of a child, so early yet in remission think real hard about whether the causes are benign.

Perhaps a year from now, we'll recognize these things as symptoms of a stomach bug of some sort. Maybe not. Maybe it will still make our heads spin thinking what it might be like for us to hear the ugly words that we are hoping to never have to.

The net effect of Henry's recent 'symptoms' was to ultimately request that his MRI scheduled in November to be moved up. Our oncologist was ever so understanding of the anxiety that rides alongside these symptoms and, as usual, was very accommodating. We're taking Henry down to Hopkins for an MRI tomorrow.

After his last vomiting spell, and after the MRI had been scheduled, Henry's mood perked up, he began eating a bit more, slept a solid 12 hours and best of all, has been playing again - and laughing.

So the roller coaster goes. Up and down and up and down. It'd be nice, though, to be able to get off the ride now and then.

Tuesday, October 14, 2008

One Year

Yesterday marked one year from Henry's diagnosis. Like many earth shattering events, I remember practically every detail. Some of which I hadn't thought about for some time. Henry's stumbling on the soccer field, unable to stand; heading to the hospital emergency room, thinking the chances of something really serious were small; the absolute terror and disorientation when the doctor told us of the tumor.

Tara and I felt the need to recall the day, to mark it somehow. But it came and went with nothing but a whimper. Perhaps it's too early, too soon after the event. Since we've come home from the hospital and treatment, each day, for a while, was like a weight lifted from our shoulders. Maybe before, our anxiety was eclipsed by the sheer busyness and stress of what we were managing our family through. Now the anxiety seems like a very slow-healing wound. You can dismiss it for a time to get through what you have to, but if you happen to bump it, you relive the pain intensified by memories.

The day before yesterday my nephew was taken to the emergency room, then to Children's Hospital in DC for an infection. Things are going better for him and he may be released soon. This was too close to home at such a time. The thought of the little guy in a hospital bed, IV in his arm, nurses, interruptions, tests. It's just not something you want to see a child have to endure. While I'm sure the last couple of days have seemed an eternity for them, I'm relieved it's been short.

Many of you have remembered us on this one year. We've learned so much over it's course, but one of the most impressed lessons upon us has been one of humility. We're so touched to be remembered, thought of, considered and cared for. We are still standing and realize that it's not been without help. So again, we thank you.

Friday, October 10, 2008

Quiet Milestone

Last week, on October 1st, Henry passed the six month threshold since his second stem cell transplant. Just days prior to that we had his tubes removed and as of that 180 day mark, he could return to school.

Henry's much older now than when he left his school, just about a year ago. His need to be around other children to play is very evident most of the day as he just wants a playmate. "Daddy, you pretend that..." "Daddy, you have to be this truck and I'll be that one." "Daddy, when will Anna and Sophie be home?"

So last Thursday he began preschool again. Just a couple days a week for now. He has so many adjustments to make, after all. Socially he must learn to be with kids again, he needs to learn to sift through the noise that typically accompanies groups of children, and his immune system has to relearn how to fight many of the common bugs that are out there.

As a result, he's been sick recently, runny nose, coughing at night, and, yes, vomiting. This last one is enough to drive parents of a child with a brain tumor to drink. The throwing up, shaking and crying are all too reminiscent of events that we'd really rather forget. We're coming up on his next MRI soon - in November. I think you could probably graph with high accuracy our moods during the ensuing months. Immediately after MRI results, feeling good. That stays steady for about two or three weeks, then the doubt starts to creep back in. Is he eating enough? Does his balance seem ok? How are we going to explain that vomiting spell? As the MRI approaches, the mood steadily descends into deeper anxiety and at times, flat out panic.

We breathe deeply and reassure ourselves, after all, what else can be done but to wait and be grateful for the days we have.

Sadly, this is not the case for all of our friends. We have what they so desperately wish for now, time and hope. Recently another family that has a child with anaplastic medulloblastoma was told by their doctors, that the disease is too far advanced and they've been through all but the most unlikely treatment options. Sophia, age 4, was recently recommended for hospice care. They have responded with the grace that a situation like this can bring you to when your care for your child outweighs the fears of tomorrow. They are focused on squeezing the life out of today and memorizing their child. Our thoughts are with them.