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.

Tuesday, November 25, 2008

Happy Thanksgiving

Over the last few days my brother's family from Kansas was visiting. Tara and I were so very happy that they made the effort to come out. Our kids particularly enjoyed their cousins, as they provide such fun playmates. Together they create such wonderful memories for all of us. Their departure this morning left us to a home town Thanksgiving, after which we'll settle into what we hope will be a long stretch of routine.

Henry was very relaxed and happy during their stay. He's feeling so much better. The treatment for his swelling after leaving the hospital recently was simply fluid restriction, but steadily over the last week he has lost the weight that came on so quickly. He's not been allowed to drink more than 16 ounces of fluid daily but has been urinating far more. It's strange to watch. At his heaviest he weighed a little over 60 pounds. He's now down to just below 48. He's looking so much more normal, no longer drawing stares from people when we're out. The puffiness around his eyes has diminished significantly with the help of a wedge we placed under the head of his mattress to keep gravity working for him instead of against.

At the same time, we've been slowly reducing his steroids, his appetite has been steady. Tara and I have the distinct feeling - and we don't mind - that he's really enjoying eating again. That's a pleasure we're just not about to deny him.

Henry cannot begin his next round of chemotherapy until his platelets begin recovering. We chose this situation to make our first use of Hospice services. Perhaps I'm being unreasonable, but sitting holding Henry, listening to him scream, while an unfamiliar nurse digs for a viable vein in his hand, is just not something I can handle very well. I guess I'm of the mind that his short life should have as little discomfort as possible. So I gave them 60 seconds and then politely asked them to pull it out, realizing that now tomorrow we'll make the trek to Baltimore to have a 45 second procedure. The nurses there are so artful, expert and complete with the way they handle these delicate situations with the kids. It will be familiar, it will be routine and it will take most of the day. But I'd rather keep him comfortable.

Recently I've seemed to notice a maturity and calm about Henry. He's very trusting of Tara and I. He no longer fusses much at inconvenience or changes of plan. He's grown to enjoy coloring, painting, and games that before he wouldn't touch. He seems laid back and happy, laughing far more than either Tara or I can remember. This combination is at once, immensely comforting and fulfilling and devastating. We're beginning to see him grow into his next phase of life, a confident, curious, interesting, talented and smart little boy. After years of babying, tantrums, little sleep - then chemotherapy, procedures, radiation and the hospital - we're able to develop a more mature relationship with him. He's polite and articulate. He's a pure pleasure to be around.

Sometimes things you say as a parent come back to get you. I'm fond of reminding my children that it's important to be grateful for what they have, instead of worrying about what they don't. This Thanksgiving, I'm content and grateful that we're all here to enjoy one another.

Friday, November 21, 2008

Day by Day

Henry had a truly wonderful day. We kept the girls home from school today to spend the last full day with their visiting Grandparents. We caught an early movie - Bolt - then went to lunch. We talked Henry into trying Boston Market in lieu of his 5th visit to Chick-fil-a this week. He's now convinced that Boston Market has 'the best chicken!'

We were visited by the third round of Hospice staff today. The amount of assistance available is wonderful. It's surreal, though, watching him laugh and play on the floor while discussing things with Hospice services.

Fortunately our current needs from the services offered don't demand much. We count ourselves ever so fortunate that Henry is feeling great. He continues to drop pounds and looks better each day. He is really in the best mood lately, finding everything gut-busting funny and laughing like he can't control himself. It's the absolute best sound in the world. He and the girls sat and played Mario Cart this afternoon for hours. Being good sisters, they let him win each time (well, almost every time...) and finally he stood up, chucked the steering wheel across the floor, threw up his hands and yelled "Yeah Me!", mimicking Anna's phony narcissism, "I won every time!" He joked and played and teased all evening, chuckling the entire time. When it came time for bed, it was clear he was tired, but had enjoyed the day so much he didn't want it to end either.

It was really a magical afternoon and evening. It was cold, but we had a fire, candles, wine, good music and family all about, and again, the laughter was golden.

Wednesday, November 19, 2008

Finding Normal

While we haven't fully settled into a rhythm again after the hospital, we're on our way. Henry is handling his fluid restriction in stride, the limiting of his juice being the only effective solution for the additional water weight he's carrying right now. Yesterday he was down a couple of pounds and we're hopeful that the morning weigh-in will reveal the same. He's limited to just two cups of juice a day, hoping that his body will look to the additional water in his cells as a source instead.

The chemotherapy he took at the beginning of his relapse treatment, Temodar, is scheduled for it's second round, but after getting his blood checked today, the doctors have suggested waiting a week to see if his platelets will begin coming up on their own as they're a bit low.

Today's visit was routine, an early trip into Baltimore, visiting in the playroom with old friends and new, and playing with favorite toys. The Big Event for Henry now that his chest catheter has been removed, is the blood draw. They have to stick his pudgy, water-filled arm and dig for a vein. Even the skilled nurses look to the experts in this case, and a hand tap was chosen this time. While painful to him (crying actually pumps the blood out faster!) it was skillfully and mercifully on target the first stick. Thank goodness for the experts!

After our visit, Henry and I took his accompanying Grandparents to visit St. Casimir, our second home during radiation and post-transplant. His memory is incredible. We recalled the water taxi, the outdoor courtyard, the roof of the building, the elevator, the shops - it was a very pleasant experience in the end.

This reminiscing brought to mind a recent conversation with our primary oncologist when first discussing Henry's relapse. "I guess this is the part of your job that makes you wonder why you went into this field," I asked after discussing our palliative care options and how things may evolve in Henry's coming weeks. His reply was clearly one he'd considered heavily before. "Really, its the people in this situation that we find we're able to help the most." And it's the truth. Good doctors, good nurses and a good hospital and staff have made all the difference in our journey to date. The fact that Henry can look back on months of treatment and want to go back, reflects the miracle of their care.

Monday, November 17, 2008

Home Again, Home Again, Jiggety Jig

Just a quick update to let everyone know that we are home and happy. Henry is working on his overall sleep deficit, and his swelling is better today than yesterday. There's a long way to go and we aren't sure that we are out of the woods, but hey, at least we're out of the hospital!

Sunday, November 16, 2008

The Right Direction

A quick update from Tara: Bryan is down in the hospital with Henry tonight. Overall, he had a good day. We're were seen by a number of physicians, and no one seems to have a firm grasp on what's going on. Which is ok.

The goals of this admission were twofold: to make sure that we weren't missing something major, and to get the swelling to go down. I'm pleased to report that we have progress on both fronts. Essentially all of the testing done has been normal, with the exception of the low protein and electrolyte abnormalities that we already know about. This is great news. Even better, Henry's swelling seemed to respond to some of the IV medicine that he got in the hospital, and though he's still quite swollen, we appear to be headed in the right direction.

There's a little more testing scheduled for tomorrow (which I expect to be normal.) We hope to be discharged after that, with close followup this week with the oncology clinic.

The best news of all is that Henry remains in great spirits. He chatted me up the whole way to the hospital last night. He went on and on about all of the fun things about the hospital (the food, the nurses, the toys), and I think he was actually looking forward to being there for a little while. It's amazing that he's put aside all of those bad memories, but has been able to hold on to the good ones. What a trooper!

Progress, But Long Night

Henry and Tara are resting in their own room on the oncology floor after a long night in the ER. Tara said that Henry was a delight, offering the nurses his Hershey's Kisses.
He'll continue to get tests and medicines to help diagnose and reduce his swelling. For now, they are comforted to be in a familiar, albeit medical, setting, attended to by the staff we've grown to trust.
I'm heading down to relieve Tara after leaving the girls with their grandmother. Hopefully we'll get to the root of the issue soon.

Saturday, November 15, 2008

ER Visit Tonight

Tara and Henry just left for the Hopkins Emergency Room tonight as after a couple hours of rest, Henry began coughing. This concerned Tara and I enough to decide that we didn't want to wait until the morning. I'm staying at home with the girls until the morning then meeting them down in Baltimore.

True to form, I told Henry and he was his little trusting self. He gave me a thumbs up as they were leaving.

Next Step

We've been focused on Henry's facial swelling of late. He's not been able to see out of his right eye for days and now his left is beginning to swell. At the rate it's going it will also be shut tomorrow.

We've contacted the doctors and are awaiting word, but we expect to drive to Baltimore today for admission. The alternatives of nutrition modification or other medicines are too slow and we're fearful that waking up tomorrow and not being able to see will really scare Henry.

A redeeming factor is that he's been in a terrific mood, very agreeable, however a bit moody. He enjoyed a visit from a family friend yesterday, we built a birdhouse and painted it and went to see Madagascar 2 with the girls and Tara yesterday evening.

**Update** We've started applying pressure to his eyes with some good results, which may buy us a couple more days before we need to treat him more aggressively.

Thursday, November 13, 2008

Clinic Visit Today

Henry's swelling issue, has not yet subsided. We moved our clinic visit forward to today and made the trip to Baltimore. It was a pretty run of the mill day for Henry at clinic, however we did have an extended conversation with the doctor about the possible causes of Henry's swelling. His right eye continues to be completely swollen shut despite some attempts to correct.

Blood and urine were taken today to run some tests. Later this afternoon we received a call saying that some of his levels are off a bit. There is no definitive cause as yet, but we've been recommended to increase his protein intake and make a nominal attempt at reducing his sodium.

So we're focused on eggs and chicken nuggets for tomorrow and we'll try to reduce the chips. There are several other avenues to check out so we'll await further opinion. For now, while it's nothing urgent, he's at least comfortable. He's not complained at all.

Vacation Photos - Day 5 & 6

Our second day in Disney we spent at their Hollywood Studios. We played the Toy Story Mania shooting game, met some very special friends, enjoyed Playhouse Disney and ended the evening with some fun back at the village. We can't forget the exciting stunt car display too! Loud but a huge highlight!
Monday - Disney's Hollywood Studios

Tuesday was a very special day at Disney. We explored the Animal Kingdom. We had a special friend spend the day with us taking pictures. (More to come!)

Tuesday - Disney's Animal Kingdom and Epcot

Wednesday, November 12, 2008

Vacation Photos - Day 4

We started out the day visiting with Mickey and Minnie as well as several other friends from Disney. The time change kind of threw us off - so we tooled around the village, played in the pool, made pillows, played on the carousel and then split up in the afternoon. The girls and Tara went to explore Sea World, while Henry and I rested and eventually joined them for a showing of Shamu.

Sunday - Universal Studios and Sea World

Tuesday, November 11, 2008


Since his diagnosis, over a year, Henry has been the same weight - 20 days on steroids, he's gained over 15 pounds. The change has been extreme. You can see from the pictures here, taken only days apart what it's come to.

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This image was a few days after our return from Florida. Making cookies with Mommy.

This one taken just today. The water retention swells his face and makes it so he can't see out of his right eye - he sleeps on that side most often. In the picture Henry is painting a 'project'. One of our favorite activities is putting together little wooden models from the craft store. He loves to spend time painting them. He has no patience for crayons, coloring or markers. But the boy loves to paint these things. He'll spend an hour painting and making sure he covers every bit of visible wood, sometimes with several colors. I just love watching the concentration when he does it. Sometimes you can catch him whispering to himself, "glob", meaning he's got a bunch of paint to spread around.

Vacation Photos - Day 3

After a long Halloween night, we decided to take it easy and to take advantage of the wonderful resort which is Give Kids the World. We attempted a visit to Universal Studios, which was unfortunately closed for their last Halloween bash. This turn of events let us spend the evening relaxing at the village.

Saturday - A Restful Day at Give Kids the World

Monday, November 10, 2008

Vacation Photos - Day 2

Our first full day at Disney included a busy morning at the Magic Kingdom. Breakfast at the Crystal Palace with Tigger, Pooh and Piglet, then off to some rides. In the afternoon - a rest and back to full tilt for makeovers and the Halloween Party, complete with a parade and fireworks.

Friday - Halloween at the Magic Kingdom

Saturday, November 8, 2008

Vacation Photos - GKTW

Lots and lots of pictures...it's taking a while to get them all into one place and organized. Here's the first batch - just a general smattering of the resort we stayed at which was ever so amazing.

Give Kids the World

More pictures with the family to come...

Wednesday, November 5, 2008

Home Sweet Home

A good trip home and looking forward to sleeping under our own roof. I'm hoping to get some of our better pictures up tomorrow. G'nite all.

The Limo

On the road and we're eating Chick-Fil-a. The driver said he's never stopped there before. I had to stop the drive thru line to get the photo - enjoy it!
While getting food with the girls, Tara was in charge of getting 'Nemo' playing in the limo. Henry's advice? "Push the power button Mommy. The power button always helps."

Back in Baltimore

Waiting for bags after an uneventful flight.

Last Day

Spent the morning packing and checking out. As seems typical here some special things were afoot.....but we have to keep some things for a surprise - more pictures in the coming days!
We have 5:30 flight, leaving just a couple of hours of shopping before we head back to the airport and limo ride home.

Tuesday, November 4, 2008

Closing Evening

We arrived back at our villa to find gifts again - another stack of movies and a photo album.
Henry went down easily and we talked, laughed and cried a little over dinner.
I took the kids for one last ice cream treat tonight and now we're off to bed.

Last Tram Ride

Leaving Epcot now for GKTW, our final departure from Disney. We will forever hold our time here close to our hearts.

GM Test Track

Up for a fast ride? We're on the verge of entry to Disney's fastest and longest ride! Yikes!

Spaceship Earth

A Break

Sleeping well in the rental car as the girls and I explore....

The Whirlwind

Now entering Epcot!


We grabbed some lunch near the Himalayas. Henry is enjoying some ice cream and then I think we'l try to catch 'The Lion King'.

Off to Everest

After an amazing productuin of Nemo, it's time for a big ride then lunch!

Nemo, The Musical

Taking it all in...we're seated to see Nemo now. We walked right in with no wait. The privelage that Wish Kids get is really humbling.

Walking Tour

That's the bestest animal I saw! - Henry about the Silverback Gorilla - and then "Let's get the scheck outta here...."

African Safari

Animal Kingdom

We're headed to the animal kingdom today. Everyone is well rested and ecited for the day.

Monday, November 3, 2008

Close of the Day

Back at GKTW, we met a visiting sloth from Discovery Cove at Sea World. Henry had a great afternoon, perhaps the best of the trip. The girls enjoyed an entertaining evening at a games night called 'Safari Double Dare'.

Back to Camp

A very good day in the end. The stunt show was fantastic and although loud, enjoyed by all.


Mommy, why do all the trash cans tell us to waste?

Ready for the Stunt Show!


We started with 'Toy Story Mania' which everyone really enjoyed, shooting things inside the Toy Story motif. Playhouse Disney was the highlight so far for Henry - seeing Mickey, Handy Manny and Pooh. We met lightning McQueen and Tow Mater for a photo op too! Now we're on our way to a see The Little Mermaid!

Fresh Start

Rested, fed and happy and on our way to Disney's Hollywood Studios!

Slower Start

We started out slowly today, meeting Mickey and Minnie and some other friends who came to the village. We ate and walked around, exploring for Henry's benefit. We made special pillows in the Castle of Miracles.
Henry's now napping, recovering from the time chane and long days. The girls are having the time of their lives, now enjoying a dip in the pool.
We're hoping to get to MGM today to meet a few characters, but keeping our options open.

Sunday, November 2, 2008


Candyland, Peppermint Swirl (which involved wrapping Daddy in red and white crepe paper) and libo!

Can't Help but Smile

Candyland at this place is larger than life. Lifesize board, loud techno-teen music and all the candyland characters - an experience not easily forgotten.

Split Decision

Henry really needed to rest for a while. All that he really want thos afternoon was to sit quietly and watch tv. We dropped Mom and the girls at Sea World for the afternoon and we're resting at the village.

Ice Cream

After three days he finally asked for ice cream! Worth being back at the village!

A Rainy Lunchtime

Henry had a short nap. The girls and I rode 'The Mummy' rollercoaster and now a burger while we wait out the rain....