Day +60: Watching and Waiting

Ice Cold Beach




Generally speaking, Sarah is doing good. She has not had any fevers for over 1 week and she is up and around now. She is eating (small amounts) and drinking fluids on her own (again, small amounts). Sarah still gets ~700cc of fluids overnight via her central line. The overnight fluids are there to insure her kidneys are not being damaged from the Cyclosporine. Once the doctors are confident her kidneys are are going to tolerate the Cyclosporine, then the overnight fluids will drop off. It's honestly a cakewalk to manage the overnight fluids relative to everything we've been asked to do up till know.

The Dana Farber doctors said we could take Sarah to the beach/ocean as long as we were not near any small groups of people and Sarah didn't swim in the water. We'll we did take her to the ocean and the kids had a great time. Since it was late summer, no one (absolutely no one) was there. Sarah did not do any swimming in the frigid New England Atlantic water, but that did not stop most of the other children. It's a high price (ice water) for fun, but those little ones are willing to pay it.

As of this week, Sarah is now going to Dana Farber every Tuesday for outpatient visits. If her Cyclosporine level is too high or too low then her medication level is adjusted and she goes in on Fridays for a recheck. The folks at Dana Farber did not contact us this afternoon with the status of her Cyclosporine level, so we don't know if we are taking Sarah in this Friday or not. I'm sure we will know tomorrow. Still more of the "make plans-break plans" approach to life for us. We make the best of it, like everybody else I suppose.

Susan and I have questioned Sarah's medical team regarding monitoring for relapse, relapse prevention and follow on treatment if relapse occurs. We began this questioning just before Sarah was released from the BMT ward at Boston Children's Hospital. We were not satisfied with the initial responses we were getting from our team, so we kept asking. Sarah has been through some pretty intense procedures to get rid of her cancer and we like to believe the cancer is gone, but children diagnosed with PH+ ALL have a fairly high relapse likelihood. It would drive you crazy to dwell on the fact that relapse is a very real possibility and I do not think that Susan and I do. However, as a parent you must believe that you are doing and have done what's right for the child that God has placed in your care. Sarah's medical team is great and they are working together to develop a "relapse management" plan. We should be able to share more by next Tuesday regarding the direction relapse monitoring will head.

As a family unit, we are trying to regroup and get some direction and routine under our feet. The children's chores (or jobs as I call them), home schooling, work, are all starting to stabilize again..., slowly. The stress level at home (mostly Susan and me) is still high, but we recognize it and are working on it.


We have always and continue to appreciate your prayers for Sarah and our family.
-Ben

The photos below are of Christopher and Katie at the beach last Saturday.