Tomorrow

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.

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.

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.

and

Coffee is caffeinated, Love is not.

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

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!

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.

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)

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.