Allistaire has only two more doses of chemo to complete conditioning for transplant. She has done great so far and has only thrown up once and that was actually before her first dose of chemo on Wednesday morning. The biggest change has been that her eating and drinking has been on a serious decline, which is totally to be expected. While she hasn’t thrown up, she does seem to have a fair amount of nausea. There are times when she seems pretty agitated and can’t verbally express where she is hurting. It’s unclear if this is a result of being nauseous or it could be from her steroid, or even the Clofarabine which can cause anxiety. The one thing she does continue to get down well, are all of her meds. She takes 6 – 8 meds at one time two, twice daily, with a number of others scattered throughout the day. Overall, though she is doing well and though much more tired, continues to have great mobility. Sara, the physical therapist, came by on Thursday and made Allistaire’s day. She hid wind up toys around the room for Allistaire to find. This activity necessitated walking and squatting down. They also blew bubbles which Allistaire absolutely delighted in! Sara says that she looks great and is right on target for her age. Allistaire has also grown to love, Ashlie, our social worker. She is now in the habit of asking Ashlie about her meetings and if she will come play with her when she’s done. This of course makes Ashlie giddy. On top of our joy for Allistaire, is the joy of those who have known Allistaire at various points in her treatment, dating all the way back to the beginning in December 2011. It has been so wonderful to have a number of folks stop by to see Allistaire and to mark this tremendous milestone. Many have remarked at how amazing she looks and how her demeanor is so much improved since she first came back in February. It is a gift to have so many rooting for your child.
While Allistaire has been downing chemo, Sten and Solveig have had the wonderful opportunity to attend family camp with the Cancer Support Community of Montana. They have been up near Kalispell, Montana on beautiful Flathead Lake. Solveig has gone swimming, completed a ropes course and gone horse back riding. She’s also made some new friends that she’s excited about. It sounds like they’ve had a great time and Sten has also really enjoyed getting to know other folks whose lives have been marked by cancer. They head home Sunday afternoon, and then we’re hoping they’ll be able to head out here next Friday, June 21st.
For me, today has been spent at a funeral and a memorial, both for little boys who have died of AML. The first was that of a little one that just passed away last Sunday evening. His family’s grief is fresh and I pray the Spirit of Christ would bring rest to their hearts. The other was for our little friend, Jaxon. It was a time of celebration for his vibrant life. It was also a wonderful time of seeing so many faces of people I love so much. It was a reunion of sorts. I am so very thankful for these beloveds in my life. It takes only seeing their face to know that you are known, that your life makes sense to them, and they are known to you. I never knew this hard time with Allistaire would yield such precious relationships.
On a final note…Allistaire is required to have cotton balls in her diaper so that the nurse or CNA can use the little litmus strips to test for a variety of things. Each diaper change I put on some diaper cream and then stick two little cotton balls on, producing a short snowman effect. On a number of hilarious occasions, Allistaire has exclaimed, “you can’t use those, I need those for my cotton ball house.” Now, I had never before heard, much less said, a word about a cotton ball house. I don’t even really know what a cotton ball house is, but Allistaire was emphatic that the cotton balls belonged to her because she was going to make a cotton ball house. So, what are you going to do? I bought some Elmer’s glue, gave her a paper plate and the bag of cotton balls, and well, now there is a pile of gooey cotton balls that apparently is a house. It brought Allistaire a good 30 plus minutes of joy. And I’m still deriving joy from it.