It’s 12:26 am and Phoebelicious is sitting next to me in bed watching Veggie Tales. Special permission for such things gets granted to cherubic, fuzzy headed girls in this family. It’s been so nice to have her home again albeit, a lot of work. Thankfully we have our dear friend Jocelyn here to help and she has been a huge blessing. We have a rotating “Phoebe night duty” schedule where either Nathan or I sleep with Phoebe and then one of the 3 of us usually sets an alarm to give meds and/or check on Phoebe and the night duty person to make sure everything is okay. It’s working pretty well so far although I think we’re getting spoiled by having an extra pair of hands around!
We have not taken her out to public places yet because she is neutropenic, but have spent our time at home, going on walks with Phoebe in the stroller or watching the boys jump on the trampoline in the backyard or taking her for bike rides with the little bike-trailer attached. And of course Veggie Tales, who can forget that? Today we had to take her in for a physical therapy assessment and it was decided that she will begin receiving in-home PT, OT and Speech therapy rather than have her inpatient for those during her home time. I can’t imagine having to go inpatient at another facility in between chemo treatments and I was really nervous that they might prescribe that. In the future she might need inpatient PT, but for now we are goign to have it at home.
Tomorrow we take her in for an Echocardiogram and to have her labs drawn and make sure all of her levels are still good. It is so nice to have Jocelyn here to home-school the boys while we run around to all of these appointments. Sure, one of us could stay back with the boys, but it is so much easier to get her in and out of the car with her ng tube and attached bag and all of her stuff when two people are there. I have been praying about a helper of some sort for the future, but am not sure if/how I want to go about that yet. My hope is that we will get into a groove now that chemo is becoming a little more manageable and we won’t need one.
Life is good, and Phoebe under our roof is great. Having her here at home and doing so well has given me enough of a breather that I am starting to find interest in the things I am usually interested in again. I feel like life since January didn’t leave a big reserve of energy for me to draw from when I was not tending to Phoebe, and it is nice to have enough free space in my mind again to think about things other than cancer. I have been catching up with the election news, pouring over curriculum catalogues, reading up on the benefits of juicing and feasting on self-sufficient living articles in my Mother Earth News magazine. I am thankful for the “exhale”…and praying for more of that where I can find it.
It’s not normal life, but it’s as close as we can get right now and I am seeing God’s provision around every little corner. The way He provides help just when I am reaching exhaustion point, or how an on-call doctor volunteers to drive to our house to replace a clogged ng tube, or what my children are learning through all of this. He is in it all even when I am too tired to recognize Him there. He never sleeps..