Out of Gas

We are ending a long week of testing, follow-up visits, and therapy with a complete spine and brain MRI. As I wheeled Meg down the hall to the MRI sign-in desk, my stomach lurched. I flashed back to our first MRI: The One That Started It All. I had to fight the urge to turn and run.

After much discussion with Meg, she decided she did not want her port accessed. So little is within her control, I felt it important to respect her decision. It took four of us to restrain her while we gassed her down before putting in her peripheral line for the Propofol. I wish I could say this is her last MRI, but we will be repeating these every couple of months. Perhaps next time, she'll choose to access her port. I'm angry and sickened that one of her last conscious moments with me I'm forcing a mask on her face as others restrain her thrashing. I can't, however, bear the thought of strangers sedating her without me there.

Earlier in the week we met with the surgeon who placed her G-tube. We've made arrangements to switch her G-Tube over to a MIC-button in early March. We also started her on Reglan to see if that would reduce the frequency of her vomiting. (So far, no luck with that.)

Meaghan will have frequent audiograms as well. Hearing loss is expected with the radiation and the chemo drugs. Every third cycle we will repeat audiograms, MRIs in addition to the frequent blood work. Her current audiogram shows normal hearing.

We also had a follow-up visit with her Pediatric Medicine and Rehabilitation doctor (PM&R). While great improvement is celebrated, he is already noting neuropathy in both legs through the Achilles tendon. It is difficult to determine if this is solely a result of the chemo or craniotomy. In all likeliness it is from both. The neuropathy is likely to worsen as she continues to receive more Vincristine. It is too soon to say if this will be permanent. Regardless, she will have weakness permanently. We will follow-up with PM&R in eight weeks. At that point, we will reassess her ataxia and determine if we will prescribe a drug for that. If the drug works, it may mean the difference between needing leg braces or not.

My conversation with our PM&R doctor was candid and refreshing. I respect his honesty. We decided to continue Meg on the Trazodone for sleeping. This drug is also a mild-antidepressant, so it's a two-fer. Our PM&R doctor places high value on the quality of sleep Meg is getting. My initial hope was to wean her off of Trazodone, thinking that once home, she wouldn't need the sleep aid. That did not prove to be the case. Her sleep at home has been broken at best. We increased her dose last night and she only awoke once! We all need our sleep if we're going to get through this with our sanity intact.

Our PM&R appointment was difficult for me. I flashed to a future of Meg in leg braces. While cancer has stained our lives, it's a silent, nearly invisible partner. Leg braces would be a constant visual reminder of her story. For my painfully shy girl, it makes her an easy target for more speculation, gawking and general social insensitivity. Despite my fears, I try to refocus myself on my response to the doctor, "Here with us and weak is better than the alternative."

With the weekend ahead, we are looking forward to a respite from all the appointments. We hope to re-energize before blood work on Tuesday and our inpatient stay starting Wednesday. The whole family is a bit on edge as Wednesday inches closer. Please pray for peaceful minds and hearts for our family.