Starting a New Plan

Three years ago, our sweet baby Boo was only one month old and we were so naïve – not even knowing what Neurofibromatosis was.  Her café au lait spots hadn’t even begun to appear (or at least our sleep deprived selves hadn’t started noticing them yet) and we had no idea what was in store for our baby girl, or how our lives would soon be changed.

At only three years old, Kendall has already gone through numerous sedated MRIs (8?), had a central line placed, a central line removed, a port placed, a port removed, went through 11 months of chemotherapy, developed an allergy to that chemotherapy, been to the ER more times than I care to admit, and sees no end in sight to all that.

Two months ago, Kendall had her routine MRI to check on her optic nerve glioma that we spent all last year treating. We were so lucky to see shrinkage last year as a result of her treatment! A lot of children are only lucky enough to halt the growth. The tumor that we were treating is still stable – that’s good news!

But the other news we received is that Kendall has two more, new tumors on her optic tracts. These tumors are still on the small side, and are across from each other – because of their placements behind the optic chiasm (where the nerves cross, and where her other tumor is located) each one still has the potential to affect her vision in both eyes.

In April, we decided to wait and watch them – but we had another MRI last week and found that these tumors are still growing. Again, we had to make the tough choice to start Kendall back up on a new chemotherapy treatment plan, and we start this Tuesday.  She’ll be taking three chemotherapy pills, five days a month, for the next year – and we don’t know exactly what that will mean for her or for us.

We know Kendall will continue to be the strong, happy, wild and fun girl that she is – so fiercely loving of her family, and we know we’ll get through this next year, again with all the support of our friends and family.  We did this once and we can do it again.