It’s been three months since I’ve last posted a blog entry. I’ve avoided blogging for so many reasons, but mainly because I feel I have nothing therapeutic to say, nothing profound or helpful. I’ve been so angry and hurt. Honestly, I’m tired of repeating myself: Don’t forget any of these children’s battles! Don’t let any of these children suffer in vain!
I’m angry because in two months I’ve followed families as they have said final goodbyes to their sons and daughters; little children who have all died from cancer. There’s nothing eloquent to say about the passing of a child. I’ve wept as I’ve read about parents’ anguished cries to God. I just can’t get past how arbitrary it all seems. Why one child and not another? I cannot even continue that line of thinking; it darkens my soul.
In these past months Meaghan has logged nearly thirty days in the hospital; 19 day consecutive. She’s had fevers, gastric paresis and delayed emptying, staph infection, numerous platelet and blood transfusions. She even has a chemical burn on her bottom from diarrhea during a round of chemo. While enduring long stays, she’s wept herself to sleep from boredom. We’ve played innumerable rounds of Uno, Memory, Zingo; colored countless pictures in coloring books. We’ve memorized the Disney Channel lineup and watched our favorite movies until we can nearly recite the scripts verbatim. This is the profile of a medically institutionalized child.
After the tedious 19 day stay, Ed and I decided to delay a round of her chemo by one week. I am focusing on all the wonderful things Meg was able to do: swim in the late days of summer; ride her tricycle; hold her puppy’s leash as we push her in her wheelchair; attend physical and occupational therapy sessions. Meaghan was even able to attend the first three days of school!
Meaghan’s stamina and resilience continues to astound me. I watch her tiny body literally being destroyed at a cellular level, so ill she can barely lift her head off the pillow. But then, her body starts to recover and BAM! She wants to play games and Barbies and go outside. The highs are so exquisite, the lows debilitating. I wish I could report that the rest of our family recovers as quickly as Meg does.
As I’ve said before, cancer is a family affair. Maddy and Ethan worry so over Meaghan. It’s a perverse world we live in when brothers and sisters ask about blood counts before they ask if they can have a friend come over. Truthfully, Madison and Ethan have stopped asking if friends can come over. Even for them, Meg has spent too much time in the hospital to jeopardize exposing her to some hidden germs. Ethan no longer asks how many days she will be in the hospital, but rather asks how many weeks.
Stability in the home has flown out the window. Our home life is very often tense. We seem to have forgotten how to be together under one roof. Daily questions are no longer, “What’s for dinner?” but rather, “Will I see you tonight? Who will pick me up from school? Can we see Meaghan?” Our sleeping arrangements shift also. When I’m home, one of the kids sleeps with me and the other will sleep in Meg’s bed. I don’t think it’s solely for their benefit anymore either. I miss being with Madison and Ethan. I am missing this phase of their youth, Hell, they're missing it, too! The ugly truth: I miss being with my healthy children. Ugh, what an awful admission, but there it is nonetheless.
Many people exclaim, “I don’t know how you do it! I could never do what you do!” I don’t do anything. I tread water. Watching a child go through treatment is like being caught in a riptide. After the initial panic and instinct to swim toward shore, you quickly shift strategies and swim parallel to shore. And just when you think you’ve swam a safe distance, shoreline within reach, you get sucked back out!
We are just trying not to get stuck in the undertow. For now, if we can at least see the shoreline, see that we might have a shot at land, then we can keep the panic at bay.
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.