Wednesday, August 31, 2011

Under Construction!

I got that late-night revamping bug and decided to remodel the blog.  Stand-by for changes over the next few days.  I'll try to make it painless for us all!  :-)

Tuesday, August 30, 2011


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.

Wednesday, August 24, 2011

Something I Love: Thred-Up

Scarlett update:  She's feeling good!  Her counts are very sluggishly increasing, so we have still not begun the new chemo (it's still lurking in the refrigerator).  We go tomorrow for another lab draw to see if she's ready.  I am working on getting a picture of her newest trick - sitting up (propped with her arms)!  She can hold it for a few minutes most times.  She even sat in the grocery cart seat for the first time yesterday!  Big girl!

I wanted to share with everyone something I am loving right now.  I have been using the site Thred-Up to exchange Scarlett's outgrown clothes for new (well, new to us, used by others) pieces in larger sizes.  We had a TON of clothes in 0-3 and 3-6 months sizes that she has finally outgrown. We've gotten many hand-me-downs, but suddenly no one around me is having a girl (boys everywhere!) and you can see from pictures that Scarlett's wardrobe is very... pink. Normally, I would donate clothes to Goodwill, but we need to keep refilling the closet with the next size (since she has grown so much lately!) and can't afford a shopping spree.  I was looking for a way to clear out the closet when my friend suggested Thred-Up, a clothes-swapping site.

How it works:  Sign-up is free.  When you sign-up, you get USPS Medium Flat Rate boxes sent to you free.  Your job is to fill them with clothes, then post a detailed description (sizes, seasons, colors, brands, the more the better).  Once your box it filled, you post it for others to choose.  When your box is picked, you print the label they send and either leave it for pick-up by USPS or drop it off at the post office.

Meanwhile, you get to choose other boxes you need.  It costs $15.95 ($10.95 shipping + $5.00 fee) to get a box.  There are tons to choose from in most sizes, especially in smaller infant sizes.  You have to shop around a bit to find the nicest things, but I did well on my first try.  I got a full box of 15 items for less than a single new item would cost, and it was all in great shape.

It's designed to be a swap, so you get to pick as many boxes as you post (plus two bonus picks to start).  You can earn cash bonuses for highly-reviewed boxes; I got two $5 bonuses toward my next purchase.  You can also get bonuses for posting boxes with sizes that are less abundant (mostly 2T and up).

If you are drowning in baby clothes like we were, this might work for you, too!  If you are interested in trying it, I can send invites (which earn us points toward purchases if you purchase).  E-mail me at and I'll send an invite to your e-mail.

(I'm not in any way affiliated with Thred-Up, nor am I getting anything for posting about this.  I have just been talking about it to everyone I know and thought I would share!)

Sunday, August 21, 2011


One day soon I'll learn how to add music to my Picasa movies.  Until then, enjoy the best (and best outtakes!) of Scarlett's latest photoshoot!

Thursday, August 18, 2011

Insurance Woes

On Tuesday, I picked up the new oral chemotherapy medications from the pharmacy.  
Chemo drugs stay in light-protective bags in the refrigerator.  Just under our milk.
One month's worth.
I was warned repeatedly by the pharmacist to make sure we get gloves to use at home when handling these outside the bag.  Protect myself, but poison my child...

It has been quite an ordeal to acquire these.  There are two different drugs: cyclophosphomide and topotecan.  Last week, the pharmacy called me to say the cyclophosphomide was not covered by our insurance, so I needed to call the insurance company to discuss with them.  I did, and they said they had it figured out and it would be covered.  While I was on the phone, I had them check for the other two drugs, topotecan and erlotinib, she would need over the next 6 months; they said it would not be a problem.  Wrong.

When I arrived for Scarlett's clinic visit this week, the story was different.  Scarlett's NP and the pharmacists spent more than 3 hours on the phone with the insurance company to fight to have them approved, but only the cyclophosphomide was going to be allowed.  This is the same drug she has had every cycle for the last 6 months.  The new drug, topotecan, is not covered, and will not be covered. 

She needs this drug for 10 days in August, October and December (the "A" cycles of maintenance chemo).  For 10 days worth of doses, the cost for us is $1500.  That's $150 per dose. 

Luckily, our team knew that was way outside our means.  They arranged to have the hospital sponsor us for this round and provide the medication free of cost (as long as I fill out the pile of paperwork required and submit a second pile of supporting documentation of our income, insurance, accounting, expenditures and a written statement asking for assistance.)

We have two weeks left of this coverage.  We don't know yet if our new insurance will cover the chemo.  We do know that it is a much less comprehensive plan, and we will have much higher costs.  Our only hope is that we can finally qualify for Medi-Cal and other state programs once I officially have no income...though that brings about a whole different problem of paying all the other bills.

I am so tired of worrying about what will happen to us.  Everything has worked out so far, and I am just hoping that we continue to find solutions.  We keep telling ourselves it can't get much worse, but then we get hit again.

In other news, here's a sneak preview of what Scarlett did today...

And...we finalized the details for the blood drive!  It was suggested that we keep it simple officially, but expect to see some of your fun ideas in our advertising!  So...

Scarlett's Birthday Blood Drive
October 22, 2011
First Presbyterian Church of Newark
35450 Newark Blvd.
Newark, CA 94560

Donation requirements here

For those who can't attend but would still like to donate, our blog will celebrate our first Red October, with the goal of having as much blood donated as we can.  No special instructions, just be ready to donate in October and let us know about it!  If you have never donated blood before, you have a while to psych yourself up for it!  More to come...

Tuesday, August 16, 2011

10 Months!

Scarlett is 10 months old today!  She weighs 17 pounds 1 ounce and is 27 inches long.  We just packed away all the 3-6 month clothes.  She is still holding strong with three teeth on the bottom, and two still fighting their way through on top, and a constant stream of drool from her lip.  She likes to look at things upside down.  She smiles when I say, "Boo!"  Her favorite toy (besides her ever-present Wubbanub collection) is a robot that hangs from her car seat handle; she will grab the rings and shake it the whole time we are in the car.  She still sleeps through the night most of the time, and takes at least one long nap and a few short "power naps" during the day.  Still no rolling over, but we're getting close to her sitting unsupported.  As always, she sets her own schedule.

We are now 8 months out from the discovery and diagnosis of her brain tumor.  She continues to grow and thrive every day, and we could not be happier!

Name the Drive!

We need a name for our blood drive.  I can't think of anything beyond "Scarlett's Blood Drive" and I can't bring myself to be that boring!  There must be something out there...creative...with her name (it works so well with a blood drive)...something catchy to bring in donors...


If you have an idea, leave it in the comments!

Friday, August 12, 2011


It took a few days to hear, but it's official:  Scarlett's MRI is clear!  NO TUMOR!

We were expecting a call yesterday, and got a tad nervous when we did not hear.  My mind went full speed ahead with ideas about the delay:  Did they need to review the images?  Were they scheduling surgery?  Did they not want to tell us over the phone, but wait to do it in person?  What is going on?????

Happily, the delay was just an accident.  Since there was nothing to comment on, radiology did not send any special notifications to the neuro-oncology team.  Since they are a busy crew these days, they just forgot to check.  Forgot?! As soon as we saw our NP and asked about the scans, she checked right away and told us everything was fine.  Whew....relief!!

We spent the day yesterday in the Sacramento/San Juaquin River delta getting some sun.  Chris got to go wakeboarding and I got to relax in the shade with Scarlett.  It was nice to get away for a day.  When one of the social services workers called to talk to me about some details of our case, I told her, "Sorry, I'm on a boat!"  Her response: "Are you wearing sunscreen?"  I think she and I will get along fine.  

Today we went in for labs, and were pretty sure she would need platelets; her numbers had been trending down again.  When they got the results back, she needed platelets and red cells, but there was not enough time left in the day for the 4+ hour transfusion, so we have to go back tomorrow morning.  On a Saturday.  Boo!

I finally uploaded my phone and camera pictures, so here's what she has been up to!
Getting ready for MRI.  We've moved up from pink gowns to green!
She loves these kinds of toys right now - sound and lights!  Buttons! Animals! 
She kept herself busy in the clinic by grabbing and chewing on her giraffe pacifier.

Lounging on Grandma's boat amidst the flip flops.

She loves baths!!

 Don't forget:  October 22 is Scarlett's blood drive.  Not sure if you are eligible to donate?  Check it out here

Tuesday, August 9, 2011

Save the Date!

It's just been confirmed:  

Scarlett (with help from mommy, daddy and Stanford Blood Center) will be hosting a blood drive for her birthday!  

October 22, 2011 in Newark, CA.  

More information to come!!

Can't be there?  Don't worry!  We are working on a plan for you, too! 

MRI Time Again

Tomorrow is MRI day again.  She will continue to have them every other month until chemo ends.  I never like the anxiety that accompanies MRIs.  She has to be NPO (no food by mouth) from midnight until after the scan at 1:00pm, so it makes it even more difficult.  

We have no reason to think there will be any change from her last scans, but there is always a slight chance...there always will be.  It is nerve-wracking and tense every time until we get the call that it is all clear.  

Her labs today show that her hemoglobin (red blood cells) is rebounding, but her platelets and white cells are still low, so it is likely she will need a transfusion before the weekend.  Her nurse practitioner told me today that most of the babies they have seen on this protocol (a few - they don't get that many) have tolerated the oral chemo well and haven't needed so many transfusions, but that Scarlett's bone marrow seems to be more sluggish to recover, so we will have to play it by ear.

Today I submitted forms to the American Cancer Society for mileage reimbursement for all of Scarlett's appointments since February.  I went through my calendar to get every single trip to either hospital for any appointment; it totaled nearly 2,000 miles.  It is 36 miles round trip to Lucile Packard, where we go most of the time, and 60 miles round trip when we have to go to Children's Hospital Oakland.  And those miles are only those in which Scarlett was in the car, not all the trips we made while she was inpatient and one of us commuted back and forth.  That is a lot of driving!  ACS will give us gas cards for $0.14 per mile driven, so we are looking forward to cringing a little less when we fill up the car.  The money for these gas cards comes from donations made through events like Relay for Life, so THANK YOU to everyone who has participated - families like us greatly appreciate the help!

Monday, August 8, 2011

Right Now


Today, Scarlett had her second evaluation with the neuropsychologist.  This is one of the most interesting aspects of her protocol, monitoring her psychological and cognitive development as she progresses through treatment.  Children who battle central nervous system (brain or spine) tumors often have cognitive impairments due to the effects of treatment on the developing brain.  In the past, this was a very rarely studied aspect of treatment, since there were very few survivors.  Now, improved treatment protocols are resulting in more survivors, and their challenges after treatment are being studied. 

Survivorship is of particular interest to Scarlett's doctor, and he has done a variety of papers and lectures on this topic (some of which Chris and I have read or seen online).  In my mind, this is a critical difference in approach from other doctors we have dealt with; others are only focused on the immediate needs and effects, while our doctor is looking at (and betting on) the best long-term outcome for Scarlett and our family.  It is a difference we felt right away when we were making treatment decisions, and it has continued to give us an optimistic outlook.

Today's test was a repeat of a test Scarlett has been given a few times by different doctors.  It is an overall developmental test that evaluates her cognitive, language, fine and gross motor, social and self-help skills.  It is amazing to see how differently she tests each time.  Last week, she scored at an average of 3-6 months in all areas. The last time this doctor saw her was in the early Spring, and she was fascinated at the difference in Scarlett's development.   Today, Scarlett showed some great advancements in a few key areas.  For instance, she has begun grabbing items she wants from other surfaces.  She lifted a bell and shook it.  She grasped a block and knocked it against another block.  She pulled a blanket to reach the bell placed on the opposite end.  These were huge - I have never seen her do that!  Last week she could barely lift the block, and she dropped it a few seconds later. She is stronger and more accurate with her right hand, but can grasp with both.

Her cognitive development will continue to be monitored as part of the study until she is 8 years old.  Most likely, these same kinds of tests will continue to be given through schools and other therapists as she gets older.  My past in psychology and education give me a sharp interest in learning how she learns, watching how she progresses and changes over time.

Friday, August 5, 2011

Another Transfusion

Yesterday we had another full day of transfusions.  I knew when we got ready in the morning that she would need one.  She had very obvious petechiae - little purple spots caused by low platelet counts - all over her legs.  This happened last month, so I was prepared for the long and tedious day in the hospital to get her back on track.  The clinic was very busy, so it took longer than usual, so we didn't get into a room for 2 and a half hours.  It took an hour to get her situated, weighed, measured, blood pressure taken, temperature taken, and pre-medicated with Benadryl and Tylenol to stave off any possible reactions.  Platelets ran for just over an hour.  Blood took 4 hours.  And, of course, despite being pre-medicated twice, Scarlett still had a minor allergic reaction at the end of the transfusion and needed a back-up dose of hydrocortisone before being discharged.

We also were told that her white cell count was undetectable, so low that it did not register.  This is disturbing, since she gets a daily injection to prevent that.  No one seemed very concerned, since she feels fine.  We just need to be cautious of exposing her to any external germs, and hope that nothing internal decides to act up before her counts rebound.  

We are hoping, hoping, hoping that this is the last cycle that requires so much medication and blood.  The next cycle, which starts near the end of the month, will be much less intense and should have a less severe reaction.  She is just beginning to get her eyelashes, brows and even a very fine, very blond layer of hair coming on on her bald little head that we want to keep.  It is a strange idea for Chris and I both...Scarlett with hair!  As sad as it was for her first hair to fall out, I can't imagine that cue-ball head with hair!  Will it be curly (like mine was) or straight (like Chris' was)?

A social services update:  we are IN at the early intervention program!  When we arrived for the evaluation on Wednesday, the social worker and doctor assured us that Scarlett qualified, that they would get everything arranged for therapy ASAP, and that everything should get much easier from here on out.  They cover physical and occupational therapy, but also put in requests for hearing and speech through the school district.  From the time we left the office to the time we got home that afternoon, the social worker had already CC'd me on 4 e-mails to wrangle services for Scarlett.

Still waiting to hear from a variety of agencies, including Social Security, California Children's Services, American Cancer Society, National Children's Cancer Fund and the blood drive team.

Ooh! and Chris has a BIG job interview on Monday.  Fingers crossed!

Tuesday, August 2, 2011

Just Cruising

I haven't posted much lately, but it's for a good reason - there isn't much to post!  Scarlett is feeling pretty good, though still not 100%.  Her tube has stayed down (of course, since we now know how to replace it!)  She is still neutropenic (immunocompromised); she is likely going to need another blood transfusion later this week.  We are hoping that this is the last week we have to give her the home injections to boost her bone marrow activity to produce white blood cells.

We visited the audiologist because her hearing aids were making a lot of excess "feedback" noise and didn't seem to fit...and they don't.  She has already outgrown the first set of ear molds.  In less than a month.  Plus, we are encountering trouble with the way her head tilts to the left; her left ear rubs on her shoulder, shirt collar, car seat strap or hood and knocks the hearing aid out.  So, we are hoping a new ear molds will stay in better.  Since it has been such a short time, the next set will be considered a "remake" of the first, and won't cost us.  Yea for growing!  Boo to complicated fitting!

We are scheduled for an evaluation with the early intervention program tomorrow, so we are hoping that leads to some more support.  We still haven't heard about many of the services we are trying to get organized, so it is about time to get back on the phone.

Two special requests:
  • Tomorrow, baby Hailey is having surgery to remove a brain tumor in Atlanta.  Her mom Ashley e-mailed us recently.  They don't yet know if the tumor is malignant, or what will happen next, so our thoughts are with them as they wait through surgery and travel whatever road is ahead for them.
  • One of our new glioblastoma buddies, Faylynn, is having a fundraiser.  She was just three months old when her tumor (the same kind as Scarlett had) was 75% removed.  She had a stroke after surgery, and is not able to walk.  She is now three and doing very well - so well that she has outgrown her current equipment and is moving to a bigger wheelchair.  Her house is not yet wheelchair accessible, so her community is holding a spaghetti dinner to raise money for a wheelchair ramp for their house.
If you can help Faylynns family, they are accepting donations. You can write a check out to: Faylynn Benefit
And mail to: Sebasticook Valley Federal C.U.
P.O. Box 145
Newport, Maine 094953 

We have been very blessed by the generosity of our readers.  We wish we could help them, but we're hoping that posting here might help them a little!