Off Treatment!

November 5th, 2012, a date to remember…

After Ian’s scans were declared stable, last Monday became his official Off Treatment Day!

And Tuesday he voted for the 1st time!

His rehab therapies for the nightmare known as Posterior Fossa Syndrome will continue, probably for a very long time, but cancer treatment? Done!

Surgery. Radiation. Chemotherapy.

Check. Check. And check!

There is still a bit of unknown. There is still the area of concern that “remains indeterminate” (radiologist’s words), but “stable since prior examination”. Stable is actually the best thing for now. Having just had another round of strong chemotherapy, if the spot had diminished, it would actually have indicated that it was more likely to have been tumor (reacting to anti-tumor agents), something I hadn’t considered until the oncologist brought it up. If the spot had grown, it would have been much more likely to have been tumor (aggressive, chemo-resistant tumor), obviously. Given both of those thoughts, “stable” was the best thing to read on last week’s report.

I, for one, am excited for his next appointment at the oncology clinic- a simple touching base kind of check-in with his doc and an “Off Treatment Party!” for the whole family. Ian doesn’t really care for cake and balloons and rousing choruses of silly songs performed by the clinic staff, he’s just so glad to be done with treatment, but his entire family went through this upheaval, his entire family worked together to keep everything and everyone afloat through this more-than-a-year-long-journey, his entire family has been running in this marathon, and I know of several young people who will love being able to truly celebrate Ian getting to this point. So we’re going to the party.

Where do we go from here?

We’ll be getting a modified Off Treatment Road Plan, as we are all in agreement that with the uncertainty of that area of concern in his last scans, more frequent follow-up scans through the 1st year would be a good idea. Typically, he would have scans every 3 months for the 1st year, but Ian will be having scans every 2 months for now. We’re hopeful that the spot will stay stable and oh-so-boring, but we just don’t know what to make of it, and, so, more frequent scans are warranted. His labs will be monitored as well (white count, hemoglobin, platelets, kidney function, etc…) and his hearing will be checked every few months as well. The chemotherapy agents he received has many side-effects (kidney damage, high-frequency hearing loss, etc…), and they stay in the system for months. Ugh. Also, radiation, even the low-dose proton beam radiation that Ian received can continue to cause problems for years down the road. Ugh.

He has an appointment with an eye specialist next month to measure the change in his eye alignment, and to see if his eyes are tracking close enough together to be helped with some special glasses, and quite possibly a surgery. At his last appointment, it was determined that the prism glasses wouldn’t work for him, at least not yet, and it was too soon for surgery. The brain works hard to correct things like imbalance in vision, and if a realignment surgery is done too soon, then eyes can continue to correct on their own and end up over-correcting, which, ultimately is in-correct, so they like to wait at least a year after the initial brain surgery.

He wears the pirate patch because of the double vision caused by eyes that don’t track together. Not only does is elicit a lot of looks in public, double-glances from passers-by, and concerned looks and stares from nervous children, but it also blocks half of his vision. As helpful as it is to not have double-vision, only seeing out of one eye at a time affects Ian’s balance a bit and especially his depth perception. It will be so good for him to be able to lose that patch! And it will be so nice for us to be able to look him in both of his crystal blue eyes.

I just got a call today, letting me know that one of the next things we’ve really been wanting to get done for Ian, a neuropsychological evaluation, is going to be covered by our insurance! (There was some serious doubt, as we do not have mental health coverage on our independent policy, but Ian’s testing will all be coded medical as it is all solely due to his medulloblastoma diagnosis and treatment.) This testing will help us immensely in going forward with finishing up his senior year, and looking beyond at his post-high-school options. It will help to understand how well he’s processing, and give some insight into what will work best for him in learning new knowledge & skills, so he can have the best chance for success in his next steps.

So, tests (blood, vision, hearing, imaging) and therapies (physical therapy, occupational therapy, & speech therapy) will continue to be a huge part of Ian’s life, and our life as a family, for the forseeable future, but the cancer treatments are done!

At least for Ian.

Cancer treatments, will still be on my mind, probably daily, for quite some time, as I watch my sister’s little boy, Tenney, and my friend Sara’s baby girl, Hannah, continue on with their very difficult fights.

Tenney’s fight is a hard one, a desperate one. He needs a miracle. He needs the new meds to work. He needs the Lord to do a mighty work, wether it be through the medicines or in spite of them, in his little body. Would you join us in praying for a miracle for Tenney?

Hannah’s been doing amazingly well, but we all know her fight is an uphill battle. Infant leukemia is a different beast than childhood leukemia, with a poorer prognosis. Hannah’s battle is made even more difficult by the fact that she only has one kidney, a condition they discovered a mere 3 weeks before her leukemia diagnosis. Would you join us in praying for baby Hannah?

Thank you. Thank you. Thank you!