HAPPY BIRTHDAY! And progress!

 

Today is Kristina’s BIRTHDAY, it’s day 55 for her transplant timeline and the 1^st day of agency care after having 6 different care givers rotating in and out over the last 2 months. The care giving ends on day 100, so she’s over halfway there to the end of care giving.

She’s in FULL REMISSION with NO SIGNS OF DISEASE.

Let’s pause here for a moment.  Earlier this year, in April, it was entirely realistic that Kristina wouldn’t even see this birthday.  Not only is she here to celebrate it, the prognosis is for many, many more.  Modern medicine, skilled care, a fighting spirit and a supportive community and perhaps a bit more have come together to make this birthday something special.

She’s still a bit in the medicine induced ‘zombie mode’ (her description) which has her quieter than usual, not as outgoing, kind a ‘blah’ type of feeling.  She describes it as being ‘monotone’.  She stopped one med which has made things a bit better, but until she’s weaned off the meds, this will continue.  She’s still on Prednisone, but at a mid level dosage and hopes to be off that on October 9^th.

Her walking is better and she’s eating better – but still shaky and the fine motor skills aren’t working well – so her handwriting is awful. 

Graft vs Host Disease (GVHD) is attacking her eyes, but she’s taking 3 different eyedrops plus an ointment to counter it and that’s working fairly well.  Without the meds, it would be pretty debilitating – feels like sandpaper is in the eyes and it’s like looking through pool water.  But it’s tolerable with the meds and not entirely unexpected.

But she can’t wear her contacts so it’s back to glasses for a month.

Even with all the good news, the current daily routine is a bit of a grind.  Different meds are taken 5 times a day with eyedrops and the ointment just before bedtime.  While the eyebrows are coming back, hair recovery will be a long road.  Combine that with the shaky, zombie zone feeling plus the glasses, Kristina isn’t feeling herself at all.  Optimistic and thankful, but it’s like waking up on your birthday and feeling 20 years older than what your passport says.

Kristina’s care team thinks she’s doing fantastic and Kristina has her eyes on upping her physical therapy once the snow starts.  She’s looking forward to some cross country skiing later this year.  Physical therapy.  Kristina style.