Saturday, May 28, 2011


There are many changes afoot for our family.  Some are good, and some present challenges that I am not yet sure how to face.

Scarlett is almost done with the Induction phase of chemotherapy.  We have been told that the next phase, Consolidation, is a bit easier on her (chemo is better tolerated) and us (only a few days of hospitalization each month!)  After two months, we will move into Maintenance, which is all outpatient and oral chemo!  By the end of summer, she should not need to be hospitalized any more (just clinic visits for blood draws, check-ups, MRIs, hearing tests, etc..)

We are also arranging therapy to begin.  She currently qualifies for physical, occupational and speech (yes, even at 7.5 months) therapy, in addition to hearing intervention.  From what I can tell, this will be at least a few days a week, in addition to her regular appointments.  There are other activities, like swimming, that may be tough to fit in, but that I would love to get her started on that will benefit her development, too.

We made a big decision about my job:  I quit.  I have been on disability since I went on Maternity leave in September, and I was so lucky to have that hold us over through the school year, but I can't do that next year.  I can't be the teacher I want to be while I am worried about Scarlett's medicines or appointments; my students deserve more than that.  Plus, my current job is 45+ minutes from home with the daily traffic, and Scarlett can't exactly go to day care while on chemo.  However, I am considering a part-time teaching job closer to home (know anyone who wants to job share 1 or 2 days a week in Newark?).  If that doesn't work out, then I will look into tutoring or some other way to make ends meet and still be available for Scarlett. 

Giving up my job means a big change in insurance.  My insurance is very good, and has covered everything for Scarlett (including 100% of her hearing aids!!)  Chris' job at Starbucks offers insurance, but due to some paperwork error when she was born, Scarlett is not enrolled.  We have been asking around to make sure they can't deny coverage when we try to enroll her during open enrollment in August...she's a high risk for insurance.  Even then, it will be a different type of plan, one which does not cover nearly as much as our current plan.  We are beginning to plan how to make the most of my insurance (like refilling expensive prescriptions) before it runs out, and we have already talked to the hospital financial counselor about state insurance and Social Security for Scarlett if we have any problems in the transition.

These are huge issues that we have never really had to think about before; we have been lucky to always have jobs and insurance, but never really need much more than the basic coverage.  Scarlett needs anything but basic coverage! Now that we have her to worry about, we can't ever be without insurance or jobs that keep us afloat.  I want to be able to do everything she needs without worrying about how much it costs or how we will pay for it.  It's a lot of pressure, but we are trying to take it one step at a time.  I hope that it will all begin to work itself out soon.


DiJe said...

Yay for the light at the end of the chemo tunnel!

I can't even begin to imagine the stress of figuring out the insurance. I had a mini-meltdown when we had to get some short-term coverage when hubs was transferring between jobs. Thinking of you and sending peaceful thoughts your way.

Krystle said...

Oh, health insurance, we deal with this all the time, with 2 sick babies & it sucks. Dh is going to have to turn down a job he got interviewed for, because the benefits were not good enough.
Open enrollment should not have any problems adding her, even with pre-existing since it's an employer sponsored plan & they took away that children/pre-existing clause with something Obama instated.
You should look into your states medicaid waiver programs. You can use this in sync with social security (which will give you $$) if you qualify. The waiver programs can sometimes pay for a caretaker (CNA, or other certification). You will get X hours per week and they could stay home with her while you run out to do some errands or take a small break for yourself. Here, the one that hopefully P qualifies for is called the ECDC (Elderly Disabled Care Waiver). They are hard to find info about and even most people at the social services office don't know about them. The girls have racked up well over 200,000 in medical bills and my insurance was great...but now that I can't work FT due to them being sick/appts we got on DH's So So.

OH & I would try to get the medicaid either way, because you can have the straight medicaid as secondary coverage to his, and it will pick up all the copays/percentages that the primary doesn't cover.

Amanda said...

Are you in New Jersey (I saw Newark written). If so, New Jersey Family Care is pretty great. We have a son who had special needs and it was extremely helpful. Still praying...

Anonymous said...

Hopefully your hospital has you looking into state waiver programs. I have a daughter with an ASD and our insurance doesn't cover speech, occupational therapy, physical therapy or any other early intervention unless it's needed due to an "injury" (and then, only for 30 visits over 60 days, for a lifetime.) So if you have a kid with autism, or cerebral palsy, or even a kiddo who, like Scarlett, has been through chemo and needs the support, you're up the creek without so much as the boat, let alone the paddle.

State waiver programs, for families that make too much to qualify for medical assistance (MA), are a godsend. You pay a family fee based on your income. It's kind of like your premium. You can use it as secondary insurance (which we do), so you're well covered and the kiddo is well covered. For us, it gives us about 4K/week of therapies we wouldn't be able to afford otherwise.

The paperwork takes a hell of a long time to go through, no matter what state you're in. A state panel has to approve the child as "disabled" for them to qualify. It takes time, patience, and follow-up, but it's worthwhile.

Good luck to you and your family as you head down this path...

Terri said...

Hi guys. I'm Terri, mom to Alexander who is 3 days younger than Scarlett. I've been following her for a while now, but haven't commented. I just wanted to add a few things that I have learned from experience.

Scarlett should qualify for early intervention services since she has some hearing issues. Here in Oklahoma the kids qualify if they have a 25% delay in 2 areas or 50% delay in one area (and some conditions automatically qualify them for services). These services are mandated by law and are at no cost to the family. My son has a vision specialist and my nephews (who were preemies) had occupational, physical, and child development specialists. So a wide range of services are available.

As for the pre-existing condition concerns-when the new healthcare law was signed into effect, insurances were no longer allowed to deny coverage to children based on pre-existing condition. Even before that, there were laws that would have covered you. I.E. Currently if an adult has less than a 63 day break in coverage, they are considered covered for pre-existing conditions on the new insurance. Also if your insurance coverage for Scarlett ends before open enrollment, you can enroll her on Chris's anyway as that is considered a life change.

Amanda said...

Oh yes! Our son got free Early Intervention in New Jersey for hearing loss and gross motor delays. Very helpful.

Anonymous said...

I had something similar happen with teaching/balancing a child with a disability (my son has Duchenne Muscular Dystrophy). I ended up taking on a Preschool position and it has worked out for us because I am only gone 2.5 days/week! I am not working in a daycare center (usually those are full time positions). Can you find something like that where you live?

Unknown said...

I wanted to make sure that you know you shouldn't have to wait for open enrollment to enroll in Chris' insurance. The reason is that since you quit your job, you qualify under the "change in circumstance" allowed insurance change. When I left my job after my baby was born, we went through the same thing. I missed his open enrollment by one month, but you just have to show that you've lost your coverage (I gave them a copy of my cobra letter which you will get automatically). BTW I'm in the bay area too, so the rules should be the same. =)

Anonymous said...

Brandi - I am so sorry you had to quit your job. I'm also a teacher and even with a healthy little girl I find it hard to be the best teacher I can be. No one warns you that your career becomes a much lower priority once you have kids! And as a teacher you know that your kids at school are so important! I find myself conflicted about what to do and who to take care of sometimes.

Moonrose2715 is correct by the way. You don't have to wait for open enrollment to get on his insurance. good luck working all that out. I hope you can find a perfect little part time job in your area to help make ends meet. I wish you and your beautiful family all the best.

Anonymous said...

I cried when I read that you quit. You seem to be the type of person that truly LOVES being a teacher. I totally understand the WHY, but it doesn't make it any easier to have to give up something you love for someone else (who is obviously more important) that you love, does it? But you're right, the panic of going back to work after 12 silly weeks seems so WRONG! Yes, you are SO fortunate to be around for her EVERYTHINGS, good and bad!

BTW, which Starbuck's does your hubby work at? My husband proposed to me in front of the SB on Newark Blvd @ Jarvis (long story)!! I just realized you probably do not want to announce that on here.

Anyways, lots of prayers for Scarlett, you and Chris!!