Week 4 begins...with a break!

Week 4 began today. Sort of. Sophie didn't actually go to proton therapy today. This was the week when her treatments were slated to be at 11:15. We were really not looking forward to this b/c she can't eat prior to her treatments, and we have had a hard enough time as it is trying to get her to eat. Jeannie gets a call this morning saying that Procure was running 1.5 hrs behind, which means Soph wouldn't get in until 12:45, and really not eat until after 2pm!!!

This was unacceptable in our eyes, so she called asking if we could skip the day, and also demand that we get seen earlier. It's tough to ask. We know that there are other children who need anesthesia in front of Soph and after her. But as her parents, we have to advocate for her. This weekend she barely ate anything on Fri and Sat. It's the single biggest worry for us right now. She has probably lost 5-6 lbs from the 39 lbs she had prior to Dec. She is literally skin and bones. Her sister is quickly catching up to her, which is not right.

Anyways, long story short, but we were able to skip radiation today, AND get a 10:15 slot for the rest of the week, which will help a lot. It's not as early as the 7am slot that we had the first week and a half, but it's better than 11:15 or 12:45. Hopefully they won't run behind either.

The radiation has finally taken 80% of her hair. Over the next few days, we are anticipating the rest will come out. It is not fun to spend hours picking up hairs off her clothes, the floor, her bed, the tub, jacket, etc. I really hope this is the first and only time I have to take my daughter's hair out. That, combined with the vincristine (chemotherapy) has taken a toll on her appetite, caused nausea, constipation, and generally not feeling too good. We've got her on a host of drugs daily, mirolax for constipation, zofran for nausea, and dexamethasone (steroid) for inflammation (brain) as well as appetite stimulant.

This week will also be a bit of a challenge, b/c I'm off the KY for 2 days for work on Tues-Weds. I'll leave at 6am on Tues, come back 7pm on Weds. It's a short trip but I'm nervous about leaving. I have a hard enough time leaving them for business before this whole mess started, I'll be on edge the whole time I'm away. We moved our clinic visit downtown to Thurs, as a result, when she'll get her weekly vincristine treatment.

Otherwise, we are plugging away. Every day is a challenge to get Sophie to eat. We've tried everything. Her favorites, making shakes with PediaSure, bribing her with any fast food she wants, candy, snacks. It's gotten better since Sat, but she is nowhere near eating enough for her body to be strengthened to fight the cancer and get through the treatments. Worse case scenario is that she has to get a feeding tube, which we want to avoid.

Selah is still keeping our spirits up every day. She is growing more and more every day, saying new things, doing funny things. She is very kind to her sister, always sharing her toys, and getting her something if she asks for it. She loves her big sister. She's been stuck in the house most of the time, as Jeannie and Soph head to radiation and/or rehab, but she has not complained at all and has been our happy baby.

Thanks for all of your prayers. Many of you have also asked how you can help. We have the meal train setup for meals (either homemade or delivered) and financial donations. Outside of that, there's not much else that we can think of. The girls have lots of & books. More than anything, your faith and encouragement will always help us.