Haley’s Giggle

In a marathon session up at Sloan Kettering, Haley was seen by the bone marrow team, the long-term treatment team, the ophthalmologist, and had an EKG, EEG, and about 6 tubes of blood drawn for all sorts of tests. The EKG and eye exams were normal, as were her blood cell levels (which have been normal for quite some time- yay!).  The Echo hasn’t come back yet. Vitamins and minerals (like zinc, iron, and Vitamin E) were tested to see if Haley has a malabsorption issue, which is causing her loose diapers.

The long-term team walked me through what we had put out of my mind for so long: that the chemotherapy used to rid her defective bone marrow could have long-term and sometimes severely detrimental consequences.  It is likely she is sterile (which I assumed); it is likely she won’t make the hormones that regular girls/women make (which is in addition to the sterility issue— this is a systemic endocrine problem, which may malfunction in the coming years); there is an increased chance of thyroid disease (also an endocrine problem), cataracts, learning problems (math, spelling, etc.); and there is a chance, ironically, of getting cancer itself.  Yes, the actual cure to make sure she didn’t get cancer in the first place increased her risk of getting some form in the next decade (though not as high of a risk as when she had CAMT). Because of all of these unknowns, the long-term team will be watching her closely for the next 10 years. Once she hits 12-years old, if she has beaten all the odds, she will return to the population in terms of chances of getting the above-mentioned issues.

It’s funny what bothers Haley when it comes to the doctors: the big nail-type needle that goes through her mediport to access the blood goes largely without event. But a blood pressure cuff comes within her line of vision and. well. watch out.

just to examine her eyes involved many hands holding her down while manually prying her eyelids open. But at the end of the day, Haley’s smiling and giggling spirit always comes out. She doesn’t know any different. She doesn’t know what may or may not come. But even though we do, it’s a great lesson to learn: it’s not good enough to be positive when things are good. But when things are bad, or when the future is uncertain. It takes no effort to root for your team when they’re winning. Anyone can do that. But it says what kind of person you are if you can root for your team when they’re losing, or have lost, or down by three touchdowns with 5 minutes left to play.
If you are gearing up for the Day of Atonement, even if you’re not. Please root for Haley. (note: working on the picure gallery… stay tuned!)