Thank you for taking time to follow Meaghan's journey of healing as she battles Medulloblastoma, a form of brain cancer.

Meaghan, our five year old daughter, was diagnosed early November 2009 after an MRI revealed she had a 4 cm solid tumor in her cerebellum. The tumor resection, while successful, resulted in serious complications.

Cancer is a family affair and here I try to chronicle not only Meg's journey, but our whole family's as well.

Sunday, July 18, 2010

My Mind's Eye

Sharing some well-deserved down time with a dear friend of mine, conversation naturally drifted to Meg. We’d been tabling the conversation until after we caught up on the more lighthearted news. With cocktail glass emptied, the plate cleared; it was time to get to the heart of the matter.

I respect this friend of mine. She’s been through hell and back – not unscathed. Over three years ago, she buried her husband who had died suddenly in an auto accident, leaving her to raise two small boys. I ask her questions others don’t have the strength to even ponder. And I know I’ll get an honest answer. How long did you stay angry? Are you still angry? Do you ever stop grieving? Is the second year any better than the first?

In many ways, Meg is so altered by this cancer that I profoundly grieve her and our family’s losses. My friend understands this, justifies this. I share the grinding details of Meg’s daily care. She doesn’t minimize my loss, but does answer the unasked question: She would have wanted his survival regardless of his physical limitations. I fall quiet; looking into my glass of ice water, hoping a worthy rebuttal appears in the glistening cubes. Nothin’. Crickets.

She’s right, of course. Having Meg is by far the best scenario. Her gentle longing isn’t a criticism, rather a shared moment of loss and reflection between good friends. It was a comfortable silence.

We talk of moving forward in our lives. Using the book analogy, my friend thought their lives would be a book together, not that she would continue on, her time with him comprising only several chapters in her life.

I didn’t care for the thought of that at all.

Several days later, my thoughts wandered back through analogies I could live with: Venn Diagrams? Rigid, but better. With Venn's we are separate, overlapping yet independent. Then my mind saw thousands of circles and diagrams this way. Ripples. Ripples seemed to capture my mind’s eye better. But they are too transient.

I wonder, is it better to be the flat stone skipping wildly along the surface, leaving a trail of ripples in it’s wake? Or rain showers, disrupting the entire surface of water for a short spell? I rather prefer the less poetic thought of a clunky chunk of dislodged sedimentary rock Ker plunking into the depths. A great big splash, loads of spray jettisoning from the site of impact, endless ripples radiating from the point of impact. The big chunk hitting bottom with a bilious thud, the geography of sand and sediment altered.

I achieve more peace thinking about Meg’s journey that way; that everyone needs to be a little displaced by her. Every parent wants their child’s life to have meaning, there’s just more urgency now. Her struggles should be pondered, her triumphs celebrated. Long after this is “over,” our worldview should remain shifted.

The real tragedy lies in our forgetting.

Monday, July 12, 2010

All Things Practical

Nearly a month has passed since my last post. Many times, I fear I may just be repeating myself, more times than notI'm blankly staring at a blinking cursor before logging off. As we near the half way point of Meg's treatment, it's appropriate to review the practical aspects of Meg's life, care and prognosis.

On the forefront of our agenda is addressing Meg's rehabilitation efforts. Earlier in the summer, Ed and I were considering the potential benefits of pursuing hyberbaric oxygen treatments in the hopes of expediting her physical rehabilitation. After conversations with several of her doctors, we have decided not to pursue this option in the short term. The cons outweighed the pros.

Our recent follow-up with our Pediatric Medicine and Rehabilitation doctor, has us pursuing another inpatient stay at Children's Hospital. Our goal would be to go for roughly 10 days between rounds of chemo. Meg's "B" cycle of chemo, which contains the drug Cytoxin, really gave her a run for her money. We noticed a definite decline in her balance, strength and overall coordination. It was after this cycle of chemo that she needed a brief hospital stay for a blood transfusion. The subsequent round of chemo made Meg neutropenic for roughly 12 days. A very tenuous 12 days - for all of us. The looming question is whether or not the insurance company will approve this short of a stay. The reasoning is the duration of stay isn't long enough to rebuild her endurance and achieve her short term rehab goals, thus not justifying her stay.

Of course, the other component to another inpatient rehab stay is the impact on the family. I know it would achieve so much for Meg, but there's no denying how difficult 10 days in the hospital will be on us. Quite frankly, it seems we are still recovering from her long initial three month hospital stay. If this hospital stay does not get approved, we will wait until after she is off treatment and then go back in for a longer stay; probably next Easter break.

After we left this exhaustive consultation, I felt oddly defeated. I love our PM&R doctor, he's a great listener, we are on the same page; he's a highly regarded physician. I had even considered another inpatient rehab stay prior to the appointment, so when he broached the subject I was initially thrilled. My feeble explanation to Ed: this appointment was another confirmation that Meg's struggles will continue well beyond our treatment.

In the meantime, we've been trying to enjoy our summer amidst four physical and occupational therapy sessions, up to two tutoring sessions and reflexology/massage appointment weekly. She loves her therapists and tutor, but really can't wait for her weekly session with Eva. This is such a benefit to Meg. Given her limited mobility, these appointments help increase circulation, moving the chemo toxins through her system faster. The best benefit? She's completely relaxed, asleep after the first 10 minutes! It's a hoot and really does bless and calm my nerves to see her so at peace.

We have also tried to make our backyard a bit of an oasis for our family. We now have a patio swing with an awning, which helps her time outside on sunny days to be more comfortable. We hung a couple of flowering hanging baskets outside her bedroom window and around the backyard. And through the generosity of a local business and friend, we were able to have a small above ground pool installed! It is really amazing to see how improved her balance and gait are after some time in the pool. And we have it right in our own backyard! This has been the most wonderful blessing for entire family.

We are a week away from our fifth cycle of chemo. All chemo stays for Meg are started with a couple day inpatient stay, followed by two weekly clinic visits, then the dreaded drop in her blood counts. We've adopted a bit of a pre-chemo ritual the week prior: blood work, audiogram, cram in as much fun with a movie, swimming, walking the dog, trip to her favorite ice cream shop. Next on Meg's list of things she wants to do is go on a boat! Consider it done, Megs! Your cousins are on the task!

Look for some summer fun pics soon. (I have to be sneaky, Megs loathes having her picture taken.)