Respecting Life

I'm back to the blog after asking Colin to write an entry.  We were delighted when he accepted and honored when he shared his beautiful thoughts with our readers.  Now I'm home on my second snow day (this week) without my work computer so I thought I'd take the time to update our friends on Dan's progress and the happenings with the VA Lyons.

Since Colin last wrote, Dan started back at George Washington to finish what he started in 2012 and enrolled in a class towards his PhD.  He's continued with a few more weeks of chemo (only 3 left this cycle!), a couple more sessions with the physical therapist, several more consults with a variety of specialists, many more tests/follow-ups/scans and x-rays, and a daily pill regimen to keep up with the best of 'em.  All in all, things continue to progress as Dan puts one foot in front of the other. He still practices walking with a cane when someone else is around to support him, but he's most comfortable and safest with the walker at this point.  He's tolerating chemo treatments well and we've been managing the side effects so he doesn't lose the weight or sleep that he so desperately needs.  The biggest issues now are his lungs and vision.  After many appointments and sleepless nights of worry, we finally have some answers.

In my last post Dan was getting ready to have fluid drained from the lining of his lungs.  We were surprised to learn there was a liter and a half of fluid hanging around! After the procedure Dan immediately felt relief, breathing easier and walking further without feeling winded.  It was a welcomed sense of progress as we closed the door on the lung portion of Dan's recovery from pneumonia.  Unfortunately, in line with our the-door-is-never-closed-in-the-medical-world trend, the lung portion isn't over.  He had a follow-up x-ray and consult with the pulmonologist last week that showed some new fluid developing in his left lung's lining.  Dan doesn't seem to notice it at this time so it's not necessary to drain yet.  We aren't too keen on extra appointments and procedures these days so we'll wait until it's necessary to have the fluid removed. We have another follow-up in six weeks where hopefully the fluid is gone and we can say goodbye to the pulmonologist for at least a few months (keeping the door ajar seems like a more reasonable goal).  In the meantime, we have an appointment with the cardiologist for some tests to make sure the fluid isn't related to his heart.  We don't think it is, but in the medical world it's all about ruling out so we have to cover our bases. 

We've been to at least three different vision specialists and neurologists to find answers about Dan's left peripheral vision loss.  A neurologist ordered an MRI and discovered a "fog" surrounding Dan's brain.  It seems that the "white matter" has been damaged from the chemo administered through Dan's spinal taps over the years.  White matter is bundles of nerve cells that help the brain transmit information throughout the brain. There is nothing wrong with Dan's brain, and nothing wrong with his vision per say, but the information telling his eyes to see isn't being communicated correctly.  We're waiting on information about how to proceed with the rest of Dan's treatment because there are several spinal taps with chemo to his brain involved with the regimen.  We may forgo the spinal taps to avoid more damage, but it's possible we'll need to risk the damage to make sure Dan gets the chemo.  Stay tuned for the decision. In the meantime, we plan to set up occupational therapy to help Dan learn to compensate and/or regain some of his peripheral vision in hopes of learning to drive (eventually) and improve his vision overall.  It is quite a nuisance as Dan struggles with and learns to live with vision loss daily.  As with all challenges thrown his way, he's making the most of "the new normal" and focusing on the positive.

Speaking of positive, we welcomed another niece into our lives, Gwyneth Rose!  My sister and brother-in-law had their third child and gave us our 5th niece/nephew to adore.  Our little angels remind us how precious life is, how beautiful life is, and how blessed we are to live it.  Little people like Gwyneth always serve as a tangible reminder that every life is important and every tiny life has purpose.  On this day when many of our friends are marching for life in the nation's capital, we say extra prayers for the millions of tiny lost souls who never have the chance to show this world how special they are.  We respect life.  We cherish life.  And we fight for life.  In these long and trying five months since Dan fell asleep into a coma, we've learned more than ever that life is a gift.  We are practicing patience and perseverance.  We are praying for strength.  We have good days, but they're never easy.  And still, we maintain our belief that life is good.  Life is joyful.  Life is beautiful.  Dan is making progress, albeit slow, but he's getting better.  He's back to school, he's tolerating chemo, he's going to physical therapy.  We're celebrating little joys and documenting our little victories whenever they come. 

Today's a good day. We're warm, we're safe, we're together.  We're here.

ALL is well.

Uncle Danny meets Gwyneth

braving the cold for PT