Wednesday Wishes

from the trenches

Steven and I are leaving this afternoon for Bethesda and the NIH. I’m going prepared this time. I've been reading about these cysts that are associated with the hemangioblastomas. In reading I was suprised to learn that the edema surrounding these tumors is the result of “vascular leaking”.

Vascular?
As in veins and arteries?

The cyst forms when the surrounding tissue it sated and can’t absorb any more fluid. The fluid inside the cyst is found to have a “protein profile similar to serum.”

Serum?
As in blood?

So now, to gain some control over this unnerving body of DNA that we call “Steven”, I need to know more.

Now I have questions.

1. Are we able, based on comparison of previous scans, the location of the tumor/cyst, and the amount of surrounding edema, to predict the future of this cyst? Will it remain stable long enough to get Steven through his first year of college? Does it need to be removed now? In the near future? In the distant future? Do we really need to wait for the more dire symptoms to appear before we take action? Or can we classify this as an unstable tumor/cyst and take action now?

2. What symptoms will we notice as the cyst in the cerebellum grows. Are we looking for mobility/balance issues? Are we waiting for the hiccups/morning vomiting? Is the occassional morning headache a symptom? Like once or twice a week? Is this hyper-gag reflex that Steven has been experiencing lately tumor related, or is it simply "just one of those things"?

3. When the tumor/cyst is finally removed, will these large aeas of edema resolve themselves? Will the "serum" be absorbed, or will Steven's brain forever be altered? Will the dizziness then disappear?

4. Can we have some control, please? Can we give Steven the control to start college and complete a year of dorm life? Just an ounce of control over things happening in Steven’s body, please? So that he can have some control in his "normal" life?

In the meantime, life goes on. Taxes are filed and the FAFSA is on its way, thank you very much.

David is once again, after a month break, diving head-first into a busy baseball season. His first AAU game is the weekend that we are gone. Thankfully he is still pulling respectable grades in high school. I reminded him daily that it is a good thing when your GPA is higher than your ERA.

Steven finally has an "easy" schedule to finish out his high school career. He still has three AP classes (and all to his liking, thank goodness), but the other 100 minute block of schedule is reserved for "teacher aide". HA! He's loafing for 1/4 of his school day, and his momma is happy with that!

Steven and David are enjoying the fact that they have lunch together this nine weeks. Can you imagine how much fun they have in that 25 minute span of the day?Steven told me that whenever he leaves the lunch table to use the restroom, David follows! Too cute.


Mary continues to humor us, sometimes intentionally and sometimes not. The other night she was talking to me about boys in the class. Her teacher was telling the class that separating boys and girls in school is sometimes a good thing. Mary agrees, as the boys tend to laugh when a girl makes a mistake. I reminded Mary (joking, of course) that she would have nothing to look at all day if they put the boys in another room.

"Right Mom," she replied. "Then I'd fall asleep at school."


What?
My little girl stays awake in 4th grade by staring at the cute boys?

I have been following the Bethesda/DC five-day weather forecast. It seems that we are in for very cold weather and maybe even a bit of snow. I decided yesterday that I would run to Target and get a pair of gloves. Target was out. I ran to Ross' in the same shopping strip. No gloves. Finally, seeing the minutes of my free hour ticking away, I hustled over to Marshalls. I found the last pair of leather gloves...hidden under a mountain of wallets...and they were on clearance!

Is that not a reason to celebrate?

Add the mixture of daily life with a dreaded but needed medical news, and all I can do is Wish.

Three wishes for today:

1. I wish there was a cure for VHL.

(A pill to make the tumors disappear would be fine. Even better, a 6 month course of medicine, followed by a declaration of clean DNA with an 85% chance that it would never go bad again! That's really what I wish for.)

2. I wish for snow.

(Lots of it. This Thursday, Friday or Saturday. In Bethesda, Maryland! )

3. I wish that children came with instruction manuals and guarantees.

That's all.