Tomorrow is August 31, 2011. August 31 was our deadline for figuring out insurance, therapy, jobs and how we would pay our bills. Scarlett's insurance through my job ends tomorrow. My last paycheck comes tomorrow. We're entering limbo, and only a few of the problems we are facing have found a solution.
Insurance: done! Scarlett will be added to Chris' Starbucks insurance as soon as we call September 1. They won't do anything until she is uncovered, but then we have 45 days to get her on the plan, and it is retroactive to the day she was first uncovered. The new plan is not as comprehensive as the old plan, but the maximum out-of-pocket is low, so we figure after her October MRI (which costs a whopping $16,000+) we'll be done for the rest of the year.
Therapy: done! Scarlett has finally been accepted to California Children's Services (CCS) for their therapy program. It took months of paperwork, phone calls and additional evaluations, but they finally have the documentation needed to say she is a candidate. This therapy is non-income dependent, which means she will qualify until she is 3 years old whether we have jobs or not. CCS also provides medical payment assistance for low-income families, which we may qualify for now, too.
Chris' Work: He didn't get the job from the big interview a few weeks ago. It took a while for them to get back to him, so we just found out Friday. However, there are a few opportunities sprouting up here and there, so we are still optimistic that something good will come along soon. Until then, he stays put at Starbucks, where we have insurance (and free coffee, the loss of which would put a serious dent in our finances!)
Brandi's Work: It was very sad to see all my friends start school over the last few weeks while I am home. I know most people would love the opportunity to stay home, and I am grateful to be able to be with Scarlett every day, but no job for me means a huge financial problem for us.
I have been looking into how I can work while also addressing Scarlett's needs. There are a few options, but they are all complicated for various reasons. I can't leave Scarlett in any kind of day care while she is still on chemo (or for a while after, really). That means we need someone to be home with her every day, ready to take her to the clinic, ER or therapy as needed. We're looking into respite care, which provides short-term care for medically fragile children, but when I discussed with our doctor, she felt we would not likely get much, as requests are high and Scarlett is relatively low-need compared to kids with breathing problems, mobility issues, etc.
I can substitute teach. This requires having a few days set aside, since subbing is on-call (as in 5am phone call). It pays okay, has no benefits, and is flexible, but in the same way unreliable. Some weeks you work a lot, some not at all.
I can do private tutoring. It is profitable per-hour and flexible, but really only available in the few hours after school. It requires some planning and leg-work on my part to get started, but may work for an additional source of income.
My best opportunity is to teach part-time in a classroom shared with another teacher. This is the highest paying option. We can arrange Chris' schedule and my mom's one day-a-week off, plus all the appointments, to fit the needs of my job. Yesterday, a 40% (2 days a week) job became available, and I made sure the district knew I was interested. I am hoping this pans out, but I will make the other options work if I need to.
I'm trying to patient. I still have one day before the deadline, and I won't allow things to fall apart after working so hard to keep it together for the last year.
Scarlett is still feeling good, but that good demeanor is masking a problem: She is neutropenic again. She has not been able to start her next chemo for the last two weeks because her counts are too low. Now they have reached the point where she is immuno-compromised, and we may have to begin daily injections to stimulate her bone marrow to produce more white cells. How I understand it: her body is telling us it is tired and it needs more time before being hit again. She has dealt with severely low counts over the last two months, and has needed so many transfusions I cannot keep track anymore. Her bone marrow is not recovering as quickly as the protocol schedule requires, so we are on hold. Her team is calling the St. Jude team (who developed and monitors the research protocol) to see how we proceed. It doesn't mean much, other than her doses of oral chemo may be lowered. We are expecting that she will have more trouble with low counts as we proceed with the next 6 months of chemo, even though it is not supposed to be so bad. Scarlett likes to set her own schedule, and we have all learned to just go along for the ride.
