Day 14

We are now 14 days solid inpatient. It's unbelievable it's been that long away from normal life, and then we think it's really not that long at all considering the days and months ahead of us. The perspective we are reminded of is that Madeleine's treatment is not like some of the kids undergoing treatment for a year or longer, so for that we are grateful.

The last 5 days have been slow and a bit frustrating. We were really looking forward to having a break while we waited (at home) for the pathology results to come back. Needless to say, insurance restrictions kept us in the hospital for the doctors to coordinate everything they needed to prepare her for chemotherapy and ensure her safety. We still do not have a prognosis, which was initially hoped for on Tuesday. The lack of information we're getting is unsettling because it feels like a plan is developing but we're being excluded from the thought process and solution development - if you know me and Jeff, you know how annoying that is to us. Tomorrow she was scheduled for anesthesia to complete a spinal tap and install a central line port in preparation for the chemo; as of this afternoon, the type of central line was being changed/clarified and the spinal tap likely delayed because all of the pathology has not yet been completed. All of these unknowns just started to really get to us; we understand we are in for the fight of her life, we just want to prepare the rest of our life to accommodate as best we can the treatments, special needs, etc. we're facing. Tomorrow morning they will make the final decision to take her in Friday or next Tuesday, and we've been told Madeleine is likely to remain in the hospital another couple of weeks, minimum.

This morning neurosurgery removed the dressing from Madeleine's stitches from the biopsy surgery - it's a zipper about 4-5 inches from the base of her neck upwards. Her horseshoe zipper from the shunt above her right ear is also healing very well and she has little to no discomfort from that set of stitches. The back of her neck is still tender but she's handling it pretty well. Today she started standing up again in our lap and balancing her head much better like she used to do before she came into the hospital. We've also been successful in maintaining Madeleine's nutrition by breast milk and her little belly and baby chub is growing. There is a program here called Child Life that provides stimulation and age-appropriate toys for the children AND siblings; the brightly colored animal mobile they provided we placed in her crib and has been a source of joy for Madeleine. She's such a laid back personality anyway and the mobile she can track with her eyes and listen to for extended periods peacefully.

That's pretty much the update; Jeff and I continue to remain by her side at all times. We feel pretty strongly about not going home until we can also bring Madeleine home. We are coming to terms with the fact that the rest of life must go on, we have to make decisions about work and won't be able to keep this up indefinitely, which is difficult because we both recognize neither of us ever thought we could be strong enough to handle something like this, or alone. The balanced unit we are, and by God's grace, has given us the strength and patience thus far to be good, sharp parents making the best decisions we can. Please keep our family in prayer. Thank you!