Home for the Weekend

Henry finished up an uneventful week at Hopkins. His counts remain low, but not so low so as to preclude his radiation. He now has only one treatment to his spine, after which his bone marrow can take a much needed break! We'll continue for the next two weeks with the rest of the brain radiation. We still don't have a finish date yet, but hope to soon.

The girls have been busy on a beach week and a week of day camp, and it's been a long time since we've spent a few uninterrupted days as a family. We're looking forward to getting on each other's nerves again! Henry was in great spirits all week, but has had a number of emotional breakdowns today. We spend so much mental energy trying to decide why: the cancer, the radiation, the travel, the disruption of his home life. Sometimes I think we forget that all three year olds have bad days every so often!

He's once again a cue-ball, all that soft peach fuzz that was coming back in is gone again. We anticipated this, of course, and take it as a sign that the other fast-growing cells that the radiation beams have encountered are likely suffering as well. We've been told that some children get sunburn-like burns to the skin, as well as pain with swallowing due to damage to the throat and esophagus. Of course, we are hoping he'll skate through without any major problems, but we listen very closely when he complains of things. Today he refused to eat lunch since his throat hurt, but he's not mentioned it again the rest of the day. It will be nice to give him a two day break over the weekend.

The Scheck house has a lot of plans this weekend, not the least of which is to start to prepare for the big yard sale and our very own Alex's Lemonade Stand. Hope you all have a great weekend as well!

Halfway

Henry continues to sail through radiation. His treatments are brief, and by 10 am he's up and ready to go. In a strange sense, we're secretly enjoying this time. There are no responsibilities for us at St. Casimir's, it's a bit of a forced vacation. So we spend our afternoons finding various activities to interest and occupy Henry. As long as he's feeling well, things are so much easier.

His counts have rebounded nicely, but we haven't received word on when they will resume the spinal radiation. We were told it would be by the end of the week.

Today is treatment number 13. We anticipate between 25 and 28 treatments, so we're at (ar about) the halfway point. We're eager to keep moving on.

We Called, You Answered

We are absolutely thrilled with our Alex's Lemonade Stand response! What a fabulous group of people we have in our corner.

So, you all have made us kick it up a notch. We've already tickled our original goal of raising $1000, and we haven't made a cup of lemonade yet!

The new Scheck family fundraising goal is now $2000.

Thanks so much to everyone who has contributed. Our yard sale is July 4th, and those who donate per cup will receive notification of the total that is owed after the big day.

Don't forget, if you haven't gotten the chance to donate or pledge yet, there's still time! Click here to donate, or email Bryan at bryanscheck@gmail.com to pledge.

Thanks again!

Awaiting Radiation

Our morning routine during radiation has become very familiar by this point. We arrive a little before 8am and wait for things to get started. This morning Henry snuggled with mommy for a bit until this week's anesthesiologist arrived. Because they've finally got his positioning down well now, Henry's only in treatment for 15 - 20 minutes. He awakes easily and is ready for the day! Today we're planning on a trip to the zoo, again courtesy of The Believe In Tomorrow Foundation.

This was Wednesday's post, but due to technical problems we couldn't get it to post right away. We had a fabulous time at the zoo, Henry even got to hand feed a giraffe! He's such a boy - as we were leaving we talked about all the animals that we saw, and asked which one was his favorite. "The tram was my favorite part." Always things with wheels.

We have a radiation break today. Henry's counts have dropped rapidly, and the radiation oncologist wants to give his bone marrow a rest. A lot of his functional bone marrow is in the spine, which takes a hit from the radiation. That combined with the fact that it's been hit pretty hard already over the last 6 months made his numbers fall off. So, we were told yesterday that we could skip Friday's treatment, and return on Monday to resume. Early next week they will continue to "rest" the spine, and treat just the head area, where there is little marrow to worry about. Once his numbers look better they'll finish up with the spinal treatments.

We're all looking forward to the girls' arrival back home. They've been in NC at the beach all week, and we miss them terribly.

Have a great weekend!

Prepare for Takeoff!

So our days in Baltimore have become fairly routine and low stress for the most part. Henry now wakes up within 10 minutes after his treatments are complete and customarily devours a blueberry poptart.

Partly because the rest of the day is up for grabs and partly to give back to a system that's done so much for us, we've enrolled Henry in two studies measuring cognitive effects of radiation on children. This means additional neuropsychology testing (which he generally enjoys) and MRI's.

Our researchers are not allowed to use extra sedation for their MRI testing so they can either wait for aclinical scan or attempt the 15 minute scan without sedation.

To prepare Henry for this, last week we began telling him he was going on a spaceship as an astronaut. He got very excited. During the neuropsych testing we met the research radiologist and told her of Henry's "trip". At the MRI today, she'd left him a bag with three beanie babies and a special note talking about the first astronauts were a dog and monkey and that the "engines" on the "spaceship" were pretty loud. It was such a nice gesture.

So the time had come. Henry entered the room in my arms. He laid on the table, let the tech prepare him, put tape over his head, earplugs in his ears and what I can only describe as a cage over his head. The sound was so loud I couldn't read the books I brought him, but instead held them up in view of the tiny mirror that allowed him to see me at the end of the tunnel they sucked him back into.

He did beautifully. They said the pictures were perfect. He's the youngest patient they've been able to do this without sedation. I was filled with pride and admiration for him.

I asked him if he had fun. He said, "Yeah, I could see the moon and everything!" Oh the power of imagination!

Kung Fu Henry

What a difference a week makes!

Henry is sailing through radiation this week. He's eating two poptarts before he even leaves recovery, then asking for food. All. Day. Long. It's been fabulous.

He's so full of energy that he only spends a third of his time with both feet on the ground. Due to his newfound lankiness (not to mention the whole brain tumor thing) he is no longer the most coordinated kid on the block, so his efforts at achieving weightlessness have us a little on edge from all the falls. Other than the blue mark on his cheek that looks like we took after him with a baseball bat, he's been unscathed. So far.

He was feeling well enough this week to go see Kung Fu Panda at the theatre. "Woah" was the operative word.

We are so so grateful that he's doing better. He's excited to come home, and after tomorrow morning's treatment will hop in the car and head west.

Thank you all for checking in on him!!

Alex's Lemonade Stand

The Scheck house will be hosting our very own Alex's Lemonade Stand on the 4th of July.

Alex's Lemonade Stand Foundation is a unique foundation that evolved from a young cancer patient's front yard lemonade stand to a nationwide fundraising movement to find a cure for pediatric cancer. What makes the foundation different is that it's model inspires people who would not be likely to donate to childhood cancer to make donations with the reassurance that "no donation is too small".

The fourth of July is traditionally in our neighborhood an insanely huge community yard sale. Since it falls on a Friday this year we expect big crowds. Our garage is packed full of yard sale fodder, proceeds which also will be donated to the foundation.

In addition to raising money from the lemonade sales, Anna is soliciting friends and family to pledge an amount of money for each cup of lemonade sold. This obviously greatly accelerates the earnings, and will hopefully motivate our "customers" to buy plenty of lemonade! If you're interested in sponsoring Anna, please email Bryan at bryanscheck@gmail.com so we can sign you up. We have donations ranging from 25 cents to a dollar a cup (!), and we have set an ambitious goal of raising $1000. Additionally, some people have felt more comfortable giving a flat donation, which we are also very grateful to receive.

There is a website designed to take the donated money here. Once the big day is over, we will call or email you to let you know what your donation is based on cups sold. You can then donate over the website.

Thank you for joining us in the fight against childhood cancer... one cup at a time!

Better Weekend

It's amazing what a little rest and some home time will do. Henry has perked up considerably. His mood has returned to normal and he's beginning to eat and drink a bit more. Yesterday morning he played with his sister - she was his 'dolphin' in the bath tub - after about 45 minutes of independent playing he wandered out with his shoulders slumped forward. "Sophie weared me all out" He laid down on the couch and slept for another two hours.

Today is shaping up to be similar. He's up and dressed and feeling good. We'll try to get him out for a while and tempt his appetite this morning with a cinnamon roll from Panera. He's asking to play in the sprinkler since it's a hot day. We've promised him that since he can't go swimming this summer, he's allowed to mess with the hose whenever he wants to. I think he's likely to take us up on that.

A Rough Beginning

Henry's radiation treatments began Wednesday. Despite having been sedated many times before without lasting effect and being told that the effects of radiation wouldn't be manifest until weeks into treatment, Henry has been an anxious, tired mess since this began, Wednesday afternoon.

The girls and I arrived to St. Casimir's about 5:30p on Wednesday only to have Henry vomit shortly after. We expected grogginess for a few hours, but not all day and certainly not this. He proceeded to have several more episodes of the same, increasing our anxiety that his tumor had returned. While rather unlikely, we spent last night in the Emergency Room at Johns Hopkins getting a CT scan of Henry's head. Fortunately the scan showed nothing of the sort to our great relief.

Henry finally slept well last night and woke up to attend his third treatment this morning in fairly decent spirits. We're home now and have a three day respite in which to observe his condition in the absence of sedation and radiation treatments. We get back at it on Tuesday due to a staffing glitch preventing our scheduled treatment Monday. We're hoping for a quiet, long and restful weekend.

Radiation: Day 1

Henry begins his radiation today. Tara took him down to St. Casimir's last evening as his treatments begin early. Early treatments are welcome because he cannot have anything to eat or drink due to the anesthesia he must receive daily. Henry will be receiving radiation to his entire spine and head. They will give boost doses to what is called the 'tumor bed' and to the suspicious spot on his spine. The treatments take less than twenty minutes or so.

We are increasingly settled about the decision and have turned our attention now toward managing him as well as our family through his treatment schedule. This seems to be the typical cycle; head up to consider the big picture, head down to get it done.

A Different Kind of Radiation

The solar variety. Courtesy of Uncle Frank, we enjoyed a fabulous weekend at Bethany Beach this weekend. Our hope was to get there before radiation, and also before the ocean water got warm enough to tempt Henry (since he still has a catheter in his chest he can't get wet). It was toe-curling cold, so the objective was met. However, we had a blast playing in the sand, the tidepools, and hitting the boardwalk.

At least one of these two is going to be giving her daddy an ulcer a few years from now. We are so not ready for teenagers.



Henry terrorized the boardwalk seagulls with his mogocycle. He felt responsible to clear it so all of the people could walk where they wanted.


One of our favorite anecdotes of the weekend also happened on the boardwalk. Henry and Bryan were going back to the car, and Bryan noticed that Henry was moving an inch at a time on his mogocycle, which normally runs pretty fast. Bryan asked him what was going on, and Henry whispered, motioning to the Bethany policeman standing close by, "I didn't want to get pulled over for going too fast." He was dead serious, too.

Unfortunately, all was not fun and games. Henry had some stomach issues this weekend, and is definitely losing weight again. He vomited once on Friday night, and I can't pretend that it didn't scare us to death. Headaches and vomiting bring back a lot of ugly memories. We had a reassuring phone call with the on-call oncologist, and plan to follow up with a call to our own oncologist tomorrow. Henry's energy level and appetite picked up a lot today, though we still didn't get in as many calories as we would have liked. Still, we're feeling better about him seeing how he looked today.