Zoe Breaks a Record!

With Cycle 5, we were thrilled beyond words that Zoe did not need to be hospitalized for side effects when she was neutropenic.  That was the first time since beginning chemotherapy in October 2011 that we did not spend the majority of the month in the hospital.  To be home for such an extent markedly improves her disposition and vocabulary usage.

Well, today is Day 12 of Cycle 6 and she is not only still home, but she hasn't even needed a blood transfusion!!!!  It's definitely a record for us.  Her blood will be tested again Monday morning.  It will be interesting to see if she never even became neutropenic with this cycle.

So, what have we been doing with all our free time?




Just ten minutes from our home is a fantastic pediatric rehabilitation center which we frequent throughout each week.  The level of professionalism here is apparent and much appreciated.  Zoe is receiving occupational therapy, physical therapy, and speech therapy from experts who know Zoe's file, work together in the same session, and provide a comprehensive program for Zoe with all of her needs taken into consideration.  They also take full advantage of Zoe's love of music to push her through challenging exercises.  Each session is physically and emotionally demanding of each of us, and I personally am exhausted by the end and I don't even have cancer.  I am amazed at Zoe's perseverance.  How can this little girl do what she does under her incredible circumstances??  And even after the screaming fits and neuropathic pain, she gives everyone her classic, "Good job!" thumbs up.  Just staggering.

Zoe's week is also punctuated with two visits from a nurse who draws Zoe's blood and administers shots, and two visits from a local music therapist.  The music therapist came into our life through Zoe's Music Together teacher and he is a perfect fit for Zoe in this season of her life.  Perhaps in an upcoming blog I may include a video snippet of how he uses music, wait time, humor, visual cues, and his rapport with her to develop her muscle tone, articulation, recall, turn-taking, and social skills.  I would love to somehow convey how important music therapy is.  It is the one therapy that is not covered by insurance, yet it is the one which makes her feel most successful and empowered and, therefore, is knitting her innards back together.

So, with a minimum of ten appointments per week just in therapy (I haven't mentioned all the bureaucracy involved in social service agencies, early intervention school services, and insurance), you can, again, see that the community is holding the rest of our life together.  If we have eaten a real meal or were able to find clean clothes on a given day, it's because someone was thinking of us and what our day must be like and helped us out in the middle of living their own lives.

Speaking of people who are thinking of us, it's time to mention Cam.  Cam is six months old today.  I'm not sure if it's the Baby Cam Song or photos of his chubby cheeks, but people from around the country have been sending us clothes for him.  I don't know who you are or how you found our address, but thank you for your gifts!  It'll be part of his "sib" story as a sibling of a person with cancer.  He is not forgotten.

Zoe is calling for me to read her a book, so I'm off to snuggle with my daughter and enjoy, "The Little Blue Truck" once again...