The End-of-Summer Blues

Pulmonary testing

We're back from Memphis. Everything healthwise looked good. We're still waiting to hear from endocrine, his labs weren't back by the time we left.

Steven's oncologist took me aside alone on Tuesday, the day after his MRI, to tell me his MRI was clear. This good news was immediately followed by a really blunt discussion about Steven's future academic and vocational prospects, a discussion that left me in tears and that I just can't reconcile with what I see in him.

We arrived home late Thursday night to see that his STAR test results had arrived. He got a 484 in English and a 513 in Math (out of 600), placing him well into the advanced levels. Shouldn't college be at least a possibility for him if that's what he wants?

I'm trying to strike some sort of balance between what I see in Steven and what his doctor, who has seen first-hand the after-effects of radiation on hundreds of children, sees.

Parenting a child in this situation isn't easy. I want to push him to perform to the best of his abilities, and no more than that. But it seems the doctor and I have different views of what his abilities are.

School starts on Monday for Steven and Sean.

So much of what I had hoped to accomplish this summer hasn't come to pass, but I think I can still say we've had a great time (photos later).

- Kathleen

All Clear

Practicing for the functional MRI

Steven completed his cognitive testing today, another three-plus hour marathon.

Then the oncology visit and results, everything was clear, for which we are so, so thankful.

Next was the functional MRI. First, Steven practices some exercises on a computer.

The scan begins

Afterward they put him into the MRI where he does those same exercises while he's being scanned. The MRI measures post-radiation white matter changes in the brain and they are trying to correlate white matter changes with cognitive deterioration.

Our friend Kevin is out of the hospital and getting ready for his final round of chemo on the same protocol as Steven. God willing, he will be going home to Michigan soon.

Steven's pterygium (cloudy area starting near his nose and covering part of his pupil) - click to enlarge

The oncologist today noticed that Steven had a pterygium in his right eye. We looked at her blankly, but I was a little shocked after seeing it that I could ever have missed it.

They are very uncommon in children, but Steven is always full of surprises.

Tomorrow we see the opthalmologist and test his hearing.

I'll write more tomorrow, for reasons I don't completely understand myself, I've been weepy since we got here and even the good MRI results haven't banished my bad mood.

So for tonight we'll try for a good sleep.

Many thanks to all of you who have prayed for us, held a good thought for us and supported us in so many different ways.

- Kathleen

A Milestone In Our Journey

We're baaack...

Sometimes I feel selfish calling it "our" journey, because more than anything, it is his journey.

Steven and Kevin Saarela, 8 yr old brain tumor and in the same treatment that Steven did.

Memphis dry ribs at Corky's

When all is considered, he's the star of the show and I'm one of the groupies.

The new Chili's Care Center

Steven fighting his anxiety over the coming IV

September 9, 2008 will mark 5 years from the day Doug and I sat staring disbelievingly at the image of the glowing ball in Steven's head. There's nothing magic about that date, with Steven's sort of cancer they say to take the age of the patient at diagnosis, (9 years for Steven), add 9 months for gestation, and that if that much time passes with no recurrence, chances are it won't come back.

A new MRI nurse and no Elomax (numbing creme)

The IV is in and no tears!

But every year, every month, every day, every hour, every minute is a milestone.

Prepping for the scan

The new MRI has a prism so he can watch movies

Steven got his MRI today. Tomorrow we hear the results.

Steven chose to watch "A River Runs Through It"

The head frame is attached and in he goes

If everything is clear (please God), he will officially be considered by St. Jude to be a longterm survivor, he will be moved from E Clinic (neuro-oncology) to the ACT clinic (After Completion of Therapy), and we will go from 6-month to annual visits.

Measuring arm span

Measuring his height

This is one (of many) things we've been praying for and something that I, his mother of little faith, have never taken for granted.

Steven posed an Elvis Gumby on his chest

Closeup of the Elvis Gumby

We're here in Memphis until Thursday.

- Kathleen