Hello, my name is Alison, and it has been one month since my last update. (chorus of “Hello, Alison”). First, and always of most interest, the Kate news. We have been fine-tuning the Coconut on many fronts. Julie D.’s ear doctor diagnosed Kate with a staph infection and gave her some different antibiotics. He also replaced her ear tubes and a subsequent check-up showed them to be open and functioning properly. Check. She’s started a new medication for pain (Lyrica) and we’ve been playing around with the dose a little. Check. She paid a visit to our friend Nurse Toni in the peds surgery department and got a new mickey button, slightly larger than her old one. Check. She saw Joe at A Step Ahead, our all-time favorite pedorthist, and had her braces adjusted. He finished them off with new straps and pads and gave her some fancy new sneakers, so her feet are looking fine. Check. On her own, Kate has lost one of her top front teeth and the other one is loose. Aggressive chewing on her “P” seems to have hastened the process of losing these teeth. She has started her summer program at Harris Hillman School, where some of her buddies from Julia Green are also going, and she is very busy her three mornings a week with Ms. Dierdra and Ms. Betty. Kate smiles when she knows she is going to school. She is also going to physical therapy, speech/occupational therapy, and horseback riding, all once a week, and she usually has fun with these. I think that many of our interventions have helped to some degree with overall comfort but Kate is still not as comfortable or as happy on a consistent basis as she recently was. She has more trouble with her balance and her chewing, and she seems more frustrated. We may be entering another phase of her disease.
My sister Eileen was diagnosed with a soft-tissue sarcoma about one month ago. The tumor is large and has already invaded blood vessels and lymph nodes, so it can’t be removed. It has also metastasized to her lungs. She has started chemotherapy in an attempt to shrink the tumor, giving her more time and more comfortable time, but has already suffered some complications which have resulted in hospital stays and a change in her chemo schedule. I spent last week in Shreveport with her in the hospital. It was absolutely precious time, potentially life-changing time if I can take advantage of the gifts my sister has to offer. Eileen fiercely wants to live as long as possible, but she is completely unafraid of death. There is a calmness about her, an acceptance which is not resignation, a vitality which leaps out of the bed when she cannot. She still focuses on the world outside of her sickroom, makes jokes, laughs at her own symptoms, asserts her opinions, teases us about our worries, and generally nourishes the spirits of all who have contact with her. I am so in awe of this person who is my sister.
With regard to our extended family, I may have mentioned on this site that our babysitter Jan’s husband, Lefty, began having seizures in the last year. These have been accompanied by cognitive and behavioral impairments which have worsened rapidly over time. Lefty has been hospitalized for the last couple of weeks, and diagnosed with an early-onset dementia. He is only 56 years old. It’s clear now that he cannot safely return home with Jan, so she’s begun exploring residential placement. In the midst of her own crisis she remains our Jan, loving Kate and worrying about Eileen and just being part of our family, as is Lefty.
Sorry this is so long...second part in next entry....
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