Jekyl and Hyde

I like Sundays at the hospital. As I walked into the building today, it was quiet - there was no security officer directing cabs and traffic with his whistle from afar, the flow of people in and out of the hospital slows to a crawl and the lines in the cafeteria are small enough that I don't feel like I'm abandoning Henry whenever I run to get a meal.

Today with Henry was easier too. I'm sure he'd finally had a decent night's rest, but moreover he, along with his parents, had begun to adjust to hospital life again and the inevitability of the duration of our visit.

We played with his trains on the floor, made a brief attempt at some crafts, watched what's become his new favorite DVD's - Max and Ruby - several times over and while he had to be coaxed into it, I did get him out of bed for a ride around the floor in his push car. Not much for physical exercise, but it's good for him to be out of that room for a while. Good for us both.

He fell asleep easily tonight after taking his medications like a champ. Ten minutes after he drifted off, the night nurse walked in with a scale to weigh him and do his vital signs. "Can we do this a little later?" I asked.

An hour passed and because he has so much fluid clearing his chemotherapy now, his diaper cannot hold his urine unless he's changed frequently. This is really upsetting to him and disrupts everyone's night. Changing him at 9 and changing him at midnight, yielded completely different episodes.

At 9, he thrashed and screamed and kicked while I did a simple diaper change. I had to hold him down to get his temperature and blood pressure, which of course gives a terrible reading to boot. At midnight, just a few minutes ago, he woke gently and allowed me to change him. I patted him for a while, he asked for a story and quietly complained that my rubbing his back was tickling him - he said this with a little giggle.

It's difficult to keep in the front of mind, but he reminded me tonight that we're all dealing with this as best we can. He's still his sweet little self, just very frustrated and mad sometimes. His acting out over the last few days is his bad mood over something that could cause any reasonable person to act irrational. We're all starting to adjust again, but, like everything, it just takes time.

Back in the Saddle

So we're back, at Hotel Hopkins.

Henry had a good night last night. He didn't object a lot to coming to the hospital - we had prepped him over several days. However, he's shown his displeasure since we got here. Since Bryan and I are feeling the same way about things, it's understandable.

Henry was pretty mad about being "hooked up". Having the IV pole attached really limits his physical mobility, but even more so locks down his mood. He feels very trapped by it. Again, so do we. He requires almost constant tending, since he can't move around on his own. For this round of chemo, he'll be hooked up the entire first week, essentially till he starts feeling sick from his counts dropping. He's had some major tantrums, about minor things. Over and over, his frustation at the situation comes out. He seems to be settling in as the day goes by.

A bonus this month - no thiotepa, therefore no 3 AM baths.

Bryan and I approach this month with some fatigue - emotional and physical. We both seem to be fighting a virus, and can't sleep enough. In addition, last month's efforts really were taxing, and we don't feel at 100% to start this one. Slow and steady is the strategy for now. The thought that this should be the last round is of course liberating. Focusing on that thought will doubtless help us all through some long days.

The Final Push

Things are going well at the Scheck Household. After being allowed to come home unexpectedly, we quickly got into step with a relatively normal family rhythm. It's become tempting to think of life in another 4 to 5 weeks when this next round of chemotherapy will be over. Life will have its own challenges then, presuming a normal life while knowing that there may be years of holding our breath and waiting, but we'll have our Henry still.

There are still a few hurdles to clear before that time. One more round of high dose chemotherapy with some dangerous side effects. Up to this point, Henry has come through with flying colors and we'll hope for the same. While it's an unpleasant process, his rebound this time has been ever so encouraging. During this next round of chemotherapy, which starts tomorrow, we do know to expect some degree of hearing loss, and we've been told he'll need a hearing aid. We'll also begin discussing the need for Henry to have radiation. This will be the most difficult decision we'll have to make regarding his therapy. Up until now, there has been general consensus on his course of therapy. Things are less clear regarding risks and benefits of radiation. We plan to solicit multiple expert opinions before deciding.

I can't overlook another bit of good news we got recently. On Tuesday, Henry had a spinal tap, the results of which were negative, meaning no cancer cells were present. Though not 100%, this result means it is less likely that the residual abnormality on the MRI is active tumor.

So we're back to Baltimore starting tomorrow. Henry knows it, but doesn't like it. Come to think of it, that's kind of how we feel too.

A Special Tribute

On Saturday night, Tara's folks and some family friends went to a 'Shaving' for the St. Baldrick's organization. If you've missed what this organization does, it raises funds for childhood cancer by having some very special people volunteer to have their locks sheared. This 'shaving' ceremony was held in Baltimore and while we intended to go ourselves, we were lucky enough to be at home with Henry instead. Jane took some pictures to tell the story...

Strangers With A Common Cause


Volunteers At Work


Lainey Garrison


First Seating - Before


First Seating - During!


The Krause Family


Second Seating


Granya and Deedad


Our New Found Friend, Full of Compassion


It's All About Childhood Cancer


A Tribute to Henry and the Scheck Family


Granya's Prizes

We want to extend a warm thank you to those participating in this St. Baldrick's event, signing the card and especially to those shaving their heads to help find a cure for childhood cancers.

The Real Winner! Thank you all!
(I couldn't get him to stop running!!)

Happy Easter

It's Easter weekend and we're all at home. We've eked out an extra night from our doctors so we won't have to return until Monday sometime.

The oncologist called with the results of Henry's tests. His CT of his sinuses looks better than the last one indicating an improvement due to the medicines he's been taking for his sinusitis. His chest x-ray was clean and the placement of his catheter is fine. His MRI remained unchanged. There remain some abnormalities which our doctor said he would like to be able to tell us were gone at this point. They may indicate inflammation due to chemotherapy but we must treat them as if they are cancer cells. No one at this point can tell us what they are - there is just not enough information to tell. We've become comfortable with some uncertainty, but this MRI, although we expected to be the same, took us a little aback with the vagueness of it's results. The upshot is that basically the doctors hoped that the 'abnormalities' would have cleared up by now. We're slowly coming to realize that this is just going to be a waiting game for a long time to come.

Recently we received back our photos from the Flashes of Hope photography session we participated in back in early February. We're pleased to have them back and at how they turned out.

Henry and Daddy

Hanging Out

The Henry Scowl

Looking Ornery

Our Sweet Boy

Little Man

Standing Proud

Just Us

Sparkle in His Eye

We hope that you all have a blessed and happy Easter.

All Is Well

A quick post at the end of a day of tests. We've had some worried callers due to a lack of posting recently. Rest assured, it's only because our limited internet access at our temporary residence.

Henry had a CT scan of his sinuses, a chest x-ray and an MRI today. They all ran really late and it made for a long day of not eating for him. We expect to hear the results tomorrow. These are routine tests and we hope to hear similar results as the last battery considering the recent chemotherapy has been of a stronger sort.

Thank you for your continued calls, care packages and notes of encouragement. We'll update more thoroughly soon.

Chik - a - lay

Mealtime has been stressful for Henry lately. He sees the rest of us sitting down to eat, and knows that he's supposed to want to eat, but he really doesn't. He generally is able to come up with something that sounds good, for which we will go to the end of the earth to procure. He looks at it with great enthusiasm, but the second it hits his tongue, he spits it out. Taste buds take quite a beating from chemo, so nothing tastes quite right. The worst part about it is the look of betrayal on his face when he doesn't taste what he expected to taste - like someone secretly poisoned the pancakes we just rushed to make.

So far, he's been drinking about 6 ounces of juice per day, sips of milk (heavily fortified with half and half to boost the calories), a few bites of vanilla ice cream, and Nerds (a very tart candy). This morning he branched out to orange TicTacs. (Great, the one and a half calorie breath mint.)

Bryan brought home some ice cream cones from the grocery store today, to satisfy another craving Henry's had. We expected him to to take an obligatory bite and be done with it. To our surprise, he ate all of the ice cream and most of the cone. He even asked for a second one, but by the time it was ready, he was no longer interested. Still, it was the most that he'd eaten yet!

This evening we had some errands to run, and Henry requested Chik-a-lay (Chik-Fil-A to those of you who need translation.) This is his favorite fast food, and a regular stopping point during our commutes to Baltimore. He asked for his usual, and took a very big first bite. I expected it to come right back out, but instead he grinned and gave me a thumb's up sign and kept right on chewing. He finished almost a full serving. For dessert tonight he had another ice cream cone.

It's great to see him eat. He gets all the nutrition he needs through his TPN, but it's troubling as a parent to see a child not eat. For now we'll keep him on it, but if his appetite continues to pick up, we may cut it in half. We know he'll stop eating again during the next chemo, but we hope he'll be able to enjoy one of life's greatest pleasure for a few days first.