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.
Have you thought about teaching online? That way you could work from home and have income. I am in a education doctoral program now at Auburn University in Alabama and we learned this summer how online schools were growing. I googled it just now and found this link.. http://www.k12.com/participating-schools/california It is not the only link to information, by any means, but I thought it may give you an idea on what this would be like! Hope this helps! We are praying for your family and following the blog!
There are several online afterschool tutoring options too - some of them you have certain kids that you meet with every week, and others where you wait online for someone who needs homework help (which is nice when your schedule is hectic). Let me know if you need me to dig up the info!
I was going to suggest online too. I know someone who stayed home with 2 kids and got their school admin license while teaching online to middle/high school. Another option would be homeschool too they often have a teacher resource and proctor exams etc.
P.S. I am O- blood and your blog has inspired me to finally give blood- hopefully I can find somewhere in the next month or so.
Thanks for the online teaching/tutoring info! And Khaira - you can do it! Look for the Red Cross or ask your local hospital where they recommend.
Hi! First time I've posted, but wanted to add my 2 cents about income producing activities. I "found" you via a friend who was in your baby birth club month, Natasha. (Sorry if I don't have exactly the right lingo. When I was child bearing years, there was no Internet)
I have a friend who just moved from the US to SE Asia and is teaching English as a foreign language...in Thailand. I imagine there are similar programs for teaching English as a second language here in the US. She did have to take some online classes to be certified through her sponsoring company, but they provide all the leads to her. She does the lessons either in person or via Skype depending on what works for her and her pupil. She did a lot of research before she picked a company....references, success of program and COST. The costs vary widely (as in any online program) so it pays to do homework.
You might also want to look into different direct sales companies. Don't let the word "sales" scare you, because in the good ones (that actally sell a product) it's really more "show and tell". :) This is definitely a flexible business, but it also pays to do your homework as your income, costs, and time can vary widely between companies. I've done a few, so would be happy to talk to you. Just didn't figure this is the place for that. :)
Most of all, you are an incredibly talented and intelligent woman. I worked for many years in hospitals (not a nurse or any other patient care, for that matter) and have been impressed many times about your grasp of the medical system, lingo, and even anatomy/physiology! I am confident that you will find the right "thing" to add to your family's income and you will be GREAT at whatever that is!!!!!
Apply for the respite care anyway. My brother in law and sister in law have an autistic child in SF and they get one day a week. They choose Saturday night since he is older and going to school now.
I am an Early Interventionist in South Carolina, so I don't know how relevant the information is, but I'll give it anyway. Ask Scarlett's birth-3 Early Interventionist about available Medicaid programs that are disability-based rather than income-based. In South Carolina, it's called TEFRA. This program may/may not also cover the deductibles for any private insurances used. There may also be some services within the birth-3 program that can allow professionals to come into your home and help that is not considered respite care...these programs are more like community supports. They don't allow for nurses to come in and watch Scarlett, but they can help with things like planning, laundry, food prep, etc.
I also have friends that are providing teaching and speech services through a South Carolina Virtual School K-12 online...I believe every state is beginning to offer an equivalent to that.
I hope some piece of that helps.
I can only imagine how stressful all of the financial stuff is. I am hoping you get the part-time shared teaching job. Keeping my fingers crossed and sending positive energy your way!
Definitely check with your homeschool groups and see if there is something available. You may be surprised at how many homeschoolers there are!
You are doing a great job! As always thank you for keeping us posted. I can not imagine how annoying and stressful it is to deal with so much red tape. You are a great advocator for your daughter and family. You and Chris are amazing parents.
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