Our boys are staying with their grandparents this week and attending VBS at their church. My Mom, the outdoors girl, has been taking them swimming down at the swimming hole, having picnics and taking them to the skateboard park and then each day ends with lots of fun and fellowship at Vacation Bible School. I’m sure my Dad has been weaving his tall-tales to keep them entertained and get thier goats as well! I think I miss them more than they miss me, but I am enjoying the peaceful atmosphere of our house right now, even if it is a little too quiet.
Nathan and I are constantly trying to figure out what to do with ourselves with just Phoebe and the two of us. So far, we have done a lot of sleeping! Not kidding. I think we must not realize how completely exhausted we are on several fronts. This type of tiredness reminds me of that first tri-mester overwhelming need to sleep, the kind that causes you to sleep so hard you drool on yourself. So, we have been napping a lot and going to bed early. We made a trip to the grocery store and then to the oncology clinic of course for her chemo push this morning. We are an exciting duo as you can see. Being alone with Phoebe has been really nice and allowed some time to just enjoy her without distraction.
She has learned the “lingo” of cancer treatment. She will say “there’s my port” and lift up her shirt when the nurse asks where it is. She also says “clean, clean, clean” when I wipe her down with an alcohol swab before her shot. And maybe the most funny; when Phoebe’s DDAVP shot is wearing off it allows her kidneys to let go of the urine her body has been hanging onto. When this happens, they call it “breaking through”…so now when Phoebe fills up her diaper at that 12 hour mark, she will say “I’m breaking through!” When the doctor or nurse gets ready to use his/her stethescope, Phoebe will grab it, put it on her heart and say “I can help you with that” and then she moves it to her tummy (because that always comes next) and says “and now my tummy”. Oh that girl. She is a funny one.
They decreased her formula feeds today since we are trying to wean completely from them. She is now eating enough table food to maintain her weight and actually gained 3 lbs in the past week! This is great, it just means we need to get her off the formula. The tricky part is that removing her formula also removes fluids and that of course effects her Diabetes Insipidus/sodium levels. It is a balancing act. We have also started giving her 40 cc’s a day of juiced fruits and vegetables which makes me feel a lot better about what is going into her body. Since chemotherapy affects the taste-buds and can often make food taste metalic, she will only tolerate certain foods and asks for them repeatedly. We keep a constant supply of spaghetti on hand as well as grilled chicken and waffles, the current favorites.
It’s nice having the ng tube because I can juice all kinds of green veggies like spinach and swiss chard and kale and deliver them straight to her belly with a syringe. Maybe all kids should come with an ng tube for veggie delivery!
In many ways it feels like life is taking on a more normal ebb and flow and that feels good. This round of chemo however, will knock Phoebe’s counts down for longer than they are usually down which means more neutropenic time when risk for infection is high. Plese pray with us that she will remain infection free and we can make it to our next round without ANY ER visits!
Thank you all for rooting for this girl and cheering us on as a family. Your encouragement means the world to us!