HI Amelie's Angels,
We had a special visitor at Casa de Amelie the other night, Dr. Crawford, Amelie's pediatric neuro-oncologist. He's kind of a big deal. and house-calls are not exactly in his job description. In 9 years, he's only made 2 house calls (Amelie being the 2nd). The first one, the mother begged for him to come see her son, who had a severe type of glioma, and he graciously did. The family lived in an apartment and they moved the bed into the living room so they could all be together. The older sibling was laying next to him, stroking his hair. Dr. Crawford knew it was his final moments, and told the family to prepare. The sweet child died the next morning.
So, when he came to see Amelie, we felt conflicting emotions. We were very nervous but excitedly anxious--we love Dr Crawford, he brings us comfort with his incredibly kind bedside manner and his impressive expertise. We knew he'd be the only one to tell us what was going on.
He examined Amelie, then we all sat down on the couch together. He brought his new fiance, a lovely, spunky woman (who's a Chinese acupuncturist and practices Eastern medicine, how cool is that?! next to her Western MD head-honcho-soon-to-be-husband) & I just adore them both. We talked for almost two hours, wherein he told us his opinion:
Amelie looks REALLY GREAT, he said. Much much better than he expected. He was(is) very surprised by how WELL she looked, compared to the reports he'd been getting the past week from the hospice team. Her color has improved, her eyes no longer red, watery, her lips pink, and her heart strong. Her belly is still distended, but the swelling has gone down in other places. The bone flap still swollen, but not enough to indicate hydrocephalus, he said. Amelie's breathing is not as strong as it was, but still able to breath here and there without oxygen (which we didn't know, we thought she needed oxygen 24/7, but she was off it for 3 hours today!) Most importantly, he concluded, she's opening her eyes.
He reiterated his medical diagnosis and again stated he does not think this is cancer/tumor disease. It is her brain. And it's dictating the show. When she's near the end, she'll have her eyes closed.....and they'll stay closed. She'll lose consciousness and her breathing, even on oxygen, will just stop. If a sudden massive seizure or some mucus type plug in her throat doesn't kill her suddenly, which isn't necessary as likely, he thinks now (her seizures have dramatically reduced, and only has a small one a day, knock on wood), but is still a possibility...because that is what happens when people are in this state: shit just goes wrong. pneumonia, infections, bedsores, chest colds, etc. The mildest thing can turn bad in an instant. But he affirmed our diligent care for her, and told us over and over, "you're doing a great job."
Dr. Crawford also said something that stunned us. He "isn't surprised she's still here, and wouldn't be surprised if we're having this conversation again in a year." The other similar patient he had lived a full year in this condition.
He also warned us: we will have these tug-of-war times again. On the brink, looks like the end, then Amelie will recover and stable, again on the brink, recover....it's just the way it happens. "You are running a marathon, not a sprint", he said. Umm, we just ran two marathons. "This could be a new one. We just DON'T KNOW, but you have to pace yourself in case it is."
I admit that took our breath away. We have run out of stamina and don't know how much longer we can bear it. I'm a Crossfit type, not an ultra-marathon type. I like it short, fast, quick, super painful, then on to brunch. But She is Amelie the Anomaly. She's just not like that. I am not saying I want her gone, make no mistake. Don't confuse this. I don't. I love her so much, even in this state, if he told me she'd be like this twenty years, I'd happily accept it. But we're in an unknown. There is some peace in knowing when the end is. I don't have it, AT ALL, but I know peace will come with time. Enter Stage Left: Jesus and Buddha. I TRUST the Lord. So, I turn to the words of other's wisdom I have commandeered for my own mental health this journey, and I think, "We bear what we must." My husband went through BUDs twice, he knows a thing or two about endurance of pain with the reward on the other side. It's the perfect metaphor for Heaven, too.
Crawfy, as I like to call him (which I know he'll never admit that he secretly likes) told us we don't know if she can still see, we don't know how fast or slow this will progress, we don't know much except it's terminal. He thinks her organs are strong and the need for any hospital visits just seems unnecessary. Keep her comfortable, as much as we can.
Crawfy and his lively fiance stayed for hours, sitting, conversing, sharing. We talked of Boss' work, how this has affected our marriage, & he gave me his very frank advice on how to "do this the right way" and not "the wrong way." What is the wrong way?, I asked. "turning on each other. not taking breaks. harboring anger, fighting, not being on the same team. Medical interventions that don't have a chance of saving her, but will keep her in the ICU, plugged into machines. that kind of thing." What is the right way? "Celebrating, laughing, telling stories, playing music, asking for help, lots of help, and assume that Amelie can hear and feel everything that is going on around her." roger that, i replied. Just having him in our house was a comfort. I wanted him to stay the night and continue the talks over breakfast, but that would have been weird. As it was, I could see the look on Hubbs' face of, "let them leave, for pete's sake woman."
We thanked Crawford profusely, telling him we feel HUMBLED and HONORED to have him care so deeply for our Amelita. I very honestly told him, "Crawfy, I know this is outside of your job. But we needed you here. We began this journey together, We must end it together." He smiled, agreed, and gave me a massive hug, "we're not at the end yet." That man deserves a medal or something.
With that news on our hearts, we went to bed trying to process and accept. My therapist is teaching me the art of "radical acceptance" and boy it's a doozy.
Amelie woke up this morning looking GREAT. Eyes open, scowling at me b/c I woke her up from a deep sleep to change her diaper, and gave me a big yaaaaawwwnnnn like a newborn baby, a soft little sigh. The sun is out, and Bravery has already destroyed the house with legos. It's a good day.
P.S. then I got the flu. so that was fun.
I think she can still see us!!!