New Year's Eve is Ethan's birthday. My mom spent the afternoon with Meaghan so I could join Ed, Madison and some friends for a couple of games of bowling. The four of us then went home for Ethan's traditional birthday dinner of Chinese food. I was back at the hospital by 7:00 p.m. As I tucked Meg into bed, I told her she would be coming home for a visit in the morning and we could sing Happy Birthday to Ethan.
She slept fitfully that night. In the morning, she was pale. Not long after she vomited. The day previous she struggled with diarrhea. I had to tell her she would not be able to go home for a visit. She shed a few big crocodile tears and hoarsely choked out, "I want to go home."
We were able to come home for a visit this past Sunday. She enjoyed beating the four of us at Uno, watching Ethan play Wii and just enjoyed being at home. On Monday, the waterworks started. Upon return from radiation and chemo we normally rest, watch TV or play a game before therapy starts. Instead, she sat facing the door and cried.
Once I ascertained she wasn't in pain, I went through all the regular questions: "Do you want Daddy or Ethan or Maddy or Nonnie or Poppie or Ribby or Jara?" "Are you angry?" "Do you feel sick?," etc. She just kept shaking her head "No." Finally, she pointed to herself, then pointed to the door. I asked, "Do you want to go home?" A vigorous nod "Yes," followed by heavier crying.
She wouldn't let me hold her, stroke her, kiss her or comfort her in any way. Nor would she let me sit on the sofa. She insisted I sit silently with her on the bed. So, for 45 minutes I watched and listened as she sobbed. Afterwards, she perked up and happily went to therapy. She has repeated the crying spells each days since, sometimes twice a day.
We are at the point in her therapy where we need to assess if the medical gains we are making compensate for the emotional toll. Most certainly, she is making progress in her physical therapy. The ataxia (wobbliness) affecting the left side of her body, however, is impeding the rate of her progress significantly. Regardless, Meg will require long term outpatient rehabilitation.
Next week we will have a family meeting to discuss Meg's discharge plans from Children's. This is will be a comprehensive meeting to discuss her medical and rehabilitative needs, including equipment required to safely care for her at home (feed pump, feeds and supplies, wheelchair, bath seat, to name a few). We'll also need to adjust our living arrangements at home. Ethan will have to move upstairs and share a room with Maddy short term in order to have Meg on the first floor next to our bedroom and the bathroom.
Tentatively, she may be discharged on January 22nd. I hate to even put that date out there because so much can change so quickly. If this plan comes to fruition that will give our family three and a half weeks together under one roof before we start the 42 week journey of maintenance chemo cycles. Three and a half weeks to reintegrate her into the family. Three and a half weeks...
How much laughter and joy and love can we stuff into three and a half weeks? Let that be our challenge together!