Thursday, January 31, 2008


We've been living in a sort of limbo recently. Henry is feeling great, really great. He's playing actively by himself and with his sisters. His energy seems boundless. He's sleeping pretty well at night now too.

Our familial bliss was broken, as we knew to expect, by the oncologist calling to announce the MRI date. It's scheduled for tomorrow, Friday. Tara will be off work and we'll go down to Hopkins together with Henry. It will be a long day for Henry as he will not be allowed to eat anything after midnight except for clear fluids. He will have to be sedated for the duration of the MRI to keep him still. They will do a full brain and spinal scan to determine how effective the treatment has been to date.

Next week he'll have to have a lumbar puncture (spinal tap) in order that the doctors can assess the spinal fluid for tumor dissemination as well.

These two procedures will determine the future course of treatments for Henry. While we worry about the possibility of the chemotherapy to date not having worked, we suspect the answer will not be black or white, but rather a shade of grey, that is to say, we may find it's working a little better or not as well as expected. The doctors have also indicated that our odds will change depending on these outcomes.

Fortunately tomorrow we'll not have to wait long for the results of the MRI. Our oncologist will call us after reading it to give the results.

Wednesday, January 30, 2008

St. Baldrick's - help cure pediatric cancer!

St. Baldrick's is a fundraising foundation dedicated to raising funds for pediatric cancer research. Currently, only $1 of every $100 spent on cancer research goes to funding all of pediatric cancer research. Since the organization's inception in 2000, they have raised over $34 million for research funding. 83 cents of every dollar goes to funding, a very high percentage for a charitable foundation.

St. Baldrick's fundraising centers around shaving the head of a volunteer, to promote solidarity with all these great kids who lose their locks to chemo. How it works: a volunteer will sponsor a child, and gets friends and family to contribute money to his fundraising efforts. There is then a public shaving to celebrate!

Bryan and I have been fortunate enough to meet a very generous person via the internet. He's an ER physician in the pacific northwest, who is participating with St. Baldrick's for the first time. His very close friend lost a child to neuroblastoma last year, so he's been very personally affected by pediatric cancer. He has graciously volunteered to sponsor Henry as well.

Bryan and Henry's big cousin Colin have already shorn themselves in solidarity with Henry, before we were aware St. Baldrick's existed. Please support our friend Shadowfax to help cure pediatric cancers! Click the link here to contribute.

Tuesday, January 29, 2008

Lighthearted Generosity

Yesterday we received some Sheetz cards in the mail given by someone to us anonymously. The cards read:

Gas is expensive, Love is not.


Coffee is caffeinated, Love is not.

Thank you for the cards...and for a good laugh.

Saturday, January 26, 2008

All's quiet on the Scheckstern front

I wanted to post an update, but really, there's nothing new to report. How nice!

Henry's doing great! His appetite, while nothing like the way it gets on steroids, is back to normal. His diarrhea is resolving. He's got plenty of energy. We wouldn't really mind if he'd learn to sleep in a little, but that's never been his strong point.

We had a clinic visit yesterday, very uneventful. His WBC count was a little lower than expected, but with each successive chemo round it can take a little longer to come up. His hemoglobin (red cells) were the highest they've been, which you can see in the color to his face. And his platelets were good as well, so it looks like we'll get away with just one platelet transfusion this cycle.

He's doing so well that we didn't even schedule another clinic appointment. Our next step will be the MRI and lumbar puncture to see how the cancer has responded to treatment. Currently the date is set for 2/14 but our oncologist is trying to move that up a bit. At any rate, he has told us that we will probably be home for a little longer this cycle so that Henry's blood can get nice and strong before we go in for the high dose chemotherapy. That combined with the fact that we skipped the fever admission this month makes us almost feel back to normal for a few weeks. What a luxury!

A happy (and cold) January weekend to you all!

Tuesday, January 22, 2008

Learning from the Past

Last week we came in to the outpatient clinic at Hopkins for an afternoon appointment. After only about 90 minutes they let us go home asking that we come back the next day for blood that wouldn't be ready for infusion until then. After our visit to the hospital the other day we had a little additional inside information regarding Henry's blood counts and came at 10am for his 2pm appointment today with hopes of getting his blood prepared and ready for transfusion by early afternoon with the ultimate idea of being home at a reasonable hour and not having to return tomorrow. So far so good, its 12:45pm and I expect the blood will be ready within the next hour or so. It makes for a long day, but better than returning two days running.

It must have been 3 year-old boy morning as there had to have been 4 little boys the same age in at the same time, including one who was only 1 day difference in age than Henry. It made the morning time go fast along with the fact that the Child Life person (assigned to keep the children distracted and entertained) did some neat crafts with them which will now adorn our refrigerator and desks at home.

I find myself a bit disoriented as we've not been admitted for a fever this cycle - a bit of a loss at what to expect next too because our chemotherapy will change and we don't yet have an idea of when it will start. It seems I've conditioned myself to be ready to change course at a moments notice and while the immediate future seems fairly steady and certain, we've come to adjust our expectations to accommodate this reality. Its kind of like holding on tight to a fast moving train. I could make the effort to pull myself into the seat, but then we may change direction and I can get thrown off - safer just to hold on tight and be ready for anything.

Sunday, January 20, 2008

Cornucopia of fun

What a great weekend! Everyone is healthy, happy, and refraining from saying in a whiny voice: "Mom, Dad, she insert-mildly-irritating-behavior me!"

We've managed to fit in the following, in no particular order:

- a trip to the mall
- a retirement dinner for a colleague
- a rousing Sly Cooper (playstation 2) tournament
- a slumber party where little sleeping was done (not our house, thankfully)
- a couple of good naps
- a plate full of tequila-lime chicken wings
- two margaritas

It was a very fun, relaxing, do-nothing-but-really-enjoy-doing-it couple of days.

And we needed it.

It's to be topped off with a unit of platelets. Bryan and I noticed some petechia on Henry's face this morning, so they're at our local hospital's ER now getting tanked up. We were very relieved to avoid the trip to Hopkins. And we got good news! Though his platelets were 13 (they transfuse under 20), his ANC is up to 500 which means he's no longer at risk of serious infections. We officially have avoided the fever admission for the month!

(cue confetti, party noisemakers, and applause)

Thursday, January 17, 2008

A Quieting Snow

I didn't realize it until it started to fall today, but I needed it to snow. I've spent several weeks unable to synthesize or verbalize my chaotic emotions and the quiet that accompanied the enormous white flakes dampened the noise in my head and went some distance in taming my thoughts.

The white stuff also provided an early exit from school for the girls and the first real opportunity for Henry to get outside to play in it. We shoveled, we threw snowballs, made snow angels and built a snowman. The experience wouldn't be complete until we ate some snow and caught flakes on our tongues. He lasted longer than I thought he would, but eventually got too cold and requested to go inside. We finished off our winter day with hot chocolate as the girls came in and the wet clothes finished in the drier.

We spent the remainder of the afternoon and evening, just hanging out with little agenda, something that I've had a difficult time relaxing enough to do. All and all, it was the best day Henry and I have had together in a while.

Tomorrow Tara is off work and will take Henry to clinic. I expect to be home with the girls as I imagine school will be canceled. Today and tomorrow, according to our past months, would be the time when Henry contracts a fever and we head to the hospital. We're currently holding our breath, still hoping that we'll skate through this cycle without an additional stay.

There's an outside hope that his counts will be rebounding, but I think that will have to wait until early next week. Until then, we'll settle for a few more normal days and time to sort out some emotions in the quiet times.

Tuesday, January 15, 2008

Youthful Optimism

Going into clinic yesterday we expected Henry's counts to be low and to receive a blood transfusion. We arrived and played for a while in the newly renovated playroom which now includes a fish tank serving also as a window from the reception area waiting room into the playroom area where children receiving outpatient chemotherapy or transfusions wait out their treatments. Henry was excited to see the new tank, but unfortunately it's residents won't arrive until Friday so the entertainment value was limited.

I had picked up several of Henry's favorite toys to bring to our visit and stopped for a couple magazines for me to read during the 3-4 hour process. We had just put in the movie 'Toy Story' getting settled in for our wait when the nurse came by and gave us Henry's counts. They were low, she announced, not to any surprise. The blood bank, however, did not any longer have a sample of Henry's blood and the sample they'd just taken would take several hours to process and it was already 2pm.

My first thought was that they were going to ask us to stay overnight as she had emphasized that his counts were very low with some gravity, but that possibility was clearly dismissed when she asked us to return the next day. Just when we thought we knew what to expect, another curve ball. Nothing too difficult, but a change in plans just the same. I asked Henry if he wanted to go home now and he looked at me like I was joking. When he realized I wasn't, he told the nurse, "At least I didn't have to get hooked up, that's good, right?"

Sunday, January 13, 2008


This is Henry's term for hand sanitizer, which we have strategically placed all over the house.

We've had a great weekend. Henry has played with his sisters almost constantly. We had some visitors, driven Cruckie, and even hit Target, a favorite Scheck family activity.

Today is day 10 of his chemo cycle, and we know that his counts are likely to be low by now. He's got a clinic appointment tomorrow, where he will almost certainly need a blood transfusion due to anemia. We're back on the fever watch - any fever will land us in the hospital again until his ANC gets high enough. If we're lucky, we'll skip that admission this month. Our oncologist told us that kids get fevers about one out of three cycles, and since we've had fevers the last two cycles we figure we're due for a better month. Hey, we can hope, right?

Hence the hanitizer. We're doing our best to keep things as clean as possible, hands especially.

So let the hanitizer fly. And consider buying stock in Purell.

Thursday, January 10, 2008

Home Again

After a text book admission and stay at the hospital, Henry came home today to play with his sisters for the afternoon. Tara and Henry arrived about 3:30pm. I met his sisters at the bus stop to keep them there as Henry wanted to pick them up with Cruckie. He went ripping around the court laughing and smiling. He was glad to be back home.

Yesterday we visited the hearing loss with the oncologist. It seems that this level of hearing loss is expected and doesn't necessarily imply what we feared. Henry may still experience a degree of loss, but nothing is certain. I feel like that's a definite theme lately.

Henry played outside for a good portion of the remaining afternoon as the weather was cold, but tolerable, and there isn't much longer before even that won't be possible. We're about to sit down for a dinner of pizza and salad, grateful to at least have vegetables as options over the limited menu of hospital food and especially grateful to be at the table together.

Wednesday, January 9, 2008

Predictably Unpredictable

Henry’s course of chemotherapy has mimicked the last one in all the good ways. We’ve only had to deal with a shadow of the steroid wakefulness issue from the last time. Last evening Henry was up until about 11pm - which is much better than 3am – and up at 7:30a or so with the usual interruptions. That left Tara tired, but functional, and Henry cranky but reasonable. His stamina today was notable as was mine having had a solid 10 hours of sleep the night before. That endurance ran out at about 6pm at which time he fell asleep while I was talking to Tara on the phone.

We did have an exception to our now routine stay today. We’ve had to begin some of the follow up testing to determine any negative effects of the chemotherapy. The other day we collected Henry’s urine over the course of 12 hours to ensure his kidney function. Today we had the hearing test. He’s clearly hearing normal sounds well, but the immediate threat is to his high-frequency range. The results of this test also become a data point to account for in his high-dose therapy. One of drugs, Cisplatin, is from a family of drugs that has this ototoxicity. We expect to use another from the same family in the next round called Carboplatin in a dose an order of magnitude greater than the current one. Obviously this poses a greater threat to his hearing should the tests show him to have any loss.

He handled the test well - far better than the baseline done in October. He’s since listened through earphones to music and we prepared him by comparing it to that. We sat in a room that looked like a recording booth, while the technician on the other side of a window spoke through earphones to Henry, asking him to raise his hand, touch his cap, or reach his eye. He followed all of her directions perfectly. She did a follow up test to confirm the results and then gave me a summary. It seems Henry has lost some of his high-frequency range of hearing.

Because of his early bedtime and the pending dose of steroids, I expected Henry to be awake in the middle of the morning. Predictably unpredictable, at 12:20am he was awakened by the nurse and couldn’t get back to sleep. We’re currently watching ‘Toy Story’ and eating cheese. Mommy – can you bring more cheese sticks?

Monday, January 7, 2008

Where, oh where....

Where, oh where has my Henry gone,
Oh where, oh where can he be?
With his hair so short and his legs so long,
Oh where, oh where is he?

This is the song that Grandma Linda sang to Henry whenever he would hide from her at our house last week. He now insists on "hiding" every time one of the nurses comes in the room, which happens quite often at the hospital. Then, from under the blanket he says "Mommy, make the nurse sing 'Where, oh where has my Henry gone?"

Fortunately, our nurses are a patient lot. Not all of them are musically gifted, but they enjoy Henry enough to humor him.

This chemo round is mirroring the last, which is what we were hoping for. He's overall feeling quite well, maybe not as well as he did at home before admission, but pretty darn good. His methotrexate had cleared by this afternoon, so we've started the second phase of chemo for this week, which sets the wheels in motion for probable discharge on Thursday.

I'm warning you now, next time you see Henry, be prepared to sing.

Saturday, January 5, 2008

So Far So Good

Yesterday brought us back to the hospital around lunchtime. Henry's fond of getting pizza from the cafeteria while we wait in the outpatient clinic to be admitted. We always go in around noon, so that tends to work out well. They begin by drawing blood and hydrating him in order to best prepare his body for clearing the chemotherapy. The blood counts determine his readiness and since it'd been some time since his last discharge, it was more or less a formality.

As I headed down to the cafeteria, I caught our oncologist by the elevator bank. He walked with me as I got salads for my mother and me and pizza for Henry. "In eight slices please," I asked at the pizza counter. Henry likes the smaller pieces.

The doctor and I talked about Henry's next chemotherapy cycle and the impending MRI. It seems that it will be a more revealing test if done at the end of this cycle than next week, so we'll put it off until later in the month. That suits me just fine. The devil that you know is better than the devil that you don't. Anyway, I'd just as soon understand the results in the full effectiveness of the treatment to date and that seems to be the doctors outlook as well.

We spoke of treatment options, some of the side effects of chemotherapy drugs, and rehashed some common memories of earlier and more painful days of Henry's illness. We'll test Henry's hearing and his heart during this cycle sometime to determine any organ damage. This seems like it would be practically negligible if we were done now, but determines how to proceed as the next stage employs much heavier doses of the drug that threatens his hearing. If it's doing a little damage now, it's a known that it will wreak its effects proportionately.

I asked about the state of research after reading this recent news article. It's a fact that children's cancers are rare enough that they often don't get funding the way we all might expect. Often times, funding for adult cancers can apply to those of children with similar diagnosis but dedicated funding is hard to come by. Often doctors don't have a particular cancer in mind when starting but look for funding as an attractor and that can begin a snowball effect if the resulting research is positive. As for anaplastic medulloblastoma, Henry's kind of cancer, it is known that genes play a part in the disease's origin, but even this knowledge is due to its association with more well defined diseases as a secondary symptom.

Later that afternoon, we were cleared to go to the eighth floor of the hospital to start chemotherapy. Henry had an uneventful evening (despite the steroids given for nausea). He had some pangs of adjusting to the hospital again, as I did too. It's not easy being awakened all night for someone to poke you with a thermometer and squeeze your leg for blood pressure, all the time messing with the tubes in your chest to boot. But he'll get used to it all again, probably quicker this time.

Today my cousin and her husband visited from Virginia. They were in town and were thoughtful enough to drop by and spend time to break up our morning and keep us company - a wonderful and helpful gesture. Tara came soon after they left in order to swap for the night. Henry took a nap and gave us some nice time to talk. I came home to the girls spending the day with their Aunt and cousin at our house. A happy and calming scene for me.

So far so good...

Thursday, January 3, 2008

Waking Up

Tomorrow we awake from the dream which has been a relatively normal holiday season. We head back into the hospital for round 3 of chemotherapy. After this cycle we'll have the MRI of Henry's head and spine to compare with the original done immediately after his tumor resection. When his blood counts are recovered, we'll begin the unknown of high-dose chemotherapy which will last approximately three months.

This last week and a half have been so confusing and disorienting. Things march along normally, but all the while I knew tomorrow would come. The undercurrent of what is happening is sometimes practically undetectable and other times it breaks through the surface and catches me completely off guard.

I just sat with Henry for a while trying to get him to sleep. I tell him I love him and he repeats a theme from a book we mimic:

"You know how much I love you, Dad?"

"How much Henry?"

"All the way to the moon and back."

"Me too Henry."

He's so docile and sweet laying in bed. He had a wonderful day with my parents, playing and shopping. They took him to an auto showroom because he wanted to know where cars came from. He oriented them to the routine we have at Target of getting popcorn while we walk through the store. He played for hours with my father, once telling him that "Grandma calls me precious." He knows he is so loved. I hope that's what's running through his head this evening as he lays in bed trying to sleep.

I left his room telling him that I need to do some jobs downstairs. He said, "That's OK, 'cause Anna and Sophie are up here to keep me company."

Sweet dreams Henry, tomorrow will be here too soon.

Tuesday, January 1, 2008

Happy New Year

We brought in the new year with visiting relatives. My brother and his family from Kansas as well as my parents were here. Originally my parents had come to support us during our third round of chemotherapy, but we've been given a few extra days out of the hospital while Henry's counts continue to recover. Instead of trips back and forth to Baltimore and spending New Year's in the hospital, we were able to enjoy one another at home while the kids played with their cousins and the adults visited.

This week brings more of the same with Friday being the beginning of our next round. We count ourselves lucky as we start 2008. Perspective changes so much with life's events. Henry's doing great, running (yes, literally running) around the house. He's eating normally for the most part. Yesterday he took the last oral medication we need to give him until Friday so we have a week of more or less stress free normality. We feel fortunate to have family and friends that care so much and while we don't know what it will bring, we'll look 2008 in the eye and march determinedly forward, one day at a time.

Happy 2008.