Thursday, October 15, 2015


Nearly 5 years ago, we sat together in a small clinic room with a doctor and nurse practitioner.  We had left Scarlett, just a few days out of surgery, in the hospital with my sister nervously watching her while we traveled down the Bay to see the doctors at a separate hospital.  We joked that it was the closest to a “date” we had had together since she was born 3 months earlier.

We were there to learn about the chemotherapy regimen we would be embarking on with Scarlett.  The first hurdle – removing the massive, deadly tumor from her brain in two 12-hour surgeries – had been jumped.  The next stage was much longer, and much more mysterious to us.

We listened carefully as the year-long process of killing our baby’s cancer cells was explained to us.  She would need to be in the hospital for days, maybe weeks, at a time.  She would need an implanted port catheter to allow chemo to be pumped into her body, as well as blood when she needed it.  She would need additional medications to help protect her other organs from the poison.  She was going to be very, very sick.

We were obviously distressed.  A box of tissues seemed to magically appear in every one of these tiny rooms we had visited over the last few weeks, and I put them to good use.  We had planned the start date, with another minor surgery, as soon as she was expected to be released from the surgeon’s care at the other hospital; there was no time to wait, process or deliberate.

We needed to know – is this going to work?  Are we going to put her through this torture for no reason?  If she is going to die anyway, shouldn’t we just let her die peacefully?  The doctor told us: Let’s look ahead to why we are doing this.  Let’s think about what we might see when she is 5.  She might have some issues with her hearing, maybe her vision.  She might struggle with balance.  Math might be harder for her than other kids.  She will walk into kindergarten.  She will go to school with other kids, and she can be happy and learn.

We hung on to that.  We have fought every single day for 5 years for that image.  We have believed in her when no one was sure.  We have agreed to medicines, surgeries, procedures, therapies and trials, all with the belief that if we kept pushing, she could do exactly as he said so long ago.

And today, she turns 5 years old. FIVE!  And she has plenty to show them.

She is not a baby anymore.  She is almost 40 pounds! She walks, or runs, everywhere, unless she doesn’t feel like it (“HUG!” she demands.) She sings constantly (while I type this, her song of choice is “Row, Row, Row Your Boat.”  Other hits include “Twinkle, Twinkle Little Star” and “Jingle Bells.” Every song ends with “Yea!!” and clapping.)  She signs and says "I love you" all day long.  She loves mermaids, graham crackers, baby dolls, toy cars and the color purple.  She asks for foods she wants – yogurt (with a “spoon!”), grapes, apples, bananas, watermelon and peas rate highly.  Everyone is her friend, and gets a hug, high 5 and fist bump, but no one outranks her cousin Caleb…though she is fond of kissing her baby cousins, too!
Scarlett, Andrew, Olivia and Caleb

She speaks in single words most of the time, but with the prompt of a sentence, she tells us “I.want.a.cracker.” She has mastered “NOPE,” and it is usually her first response; however, if she’s excited, she says “OOH!” and claps her hands over her head.  

First day of school 2015
We’re working on potty training.  It’s been a while, and it’s going to take a while, but we’ve made progress and we’re pushing ahead.  She can get clothes off (a favorite pastime of hers!) and helps to put them on (not as exciting).  She does not like having her hair brushed, but does enjoy choosing the bows for her hair.  She insists on her jackets being fully zipped, and her shoes before going outside (“SHOES!”) She can navigate her iPad about as quickly as I can, and likes to listen to songs and do puzzles, and asks to wear her headphones (which mommy and daddy appreciate!)

At her IEP last month, we solidified the goals for the next year.  She can currently count to 10 and sing the alphabet; she will be working on identifying numbers of things and the letters in her name.  She knows colors, animals (plus sounds – “MOO!”), and is working on shapes.  In fact, when we tried to count the words she knows, both spoken and signed, we lost count at about 150.  We know she understands far more, like “Go close the door,” “Where are your shoes?” and “Caleb is coming!” (which we only say when he is in sight, or else she cries at the window until he appears!)

With Caleb!
We are phasing out some things…physical and occupational therapy only once a month…MRIs only every 6 months…port removed last week…no more surgeries!
Boo boo face!
But that’s not to say everything is simple.

There are many challenges ahead.  We are fighting for an effective feeding therapy that will allow her to eat without using the G-Tube.  We are currently waiting for an official denial, which we will protest, which will be denied again, which will then allow us to apply for outside funding. 

She should be entering kindergarten next school year.  We are very torn on how to handle this transition.  She is so much younger than her age suggests; is she really going to ready for a school with bigger kids? We do not know what school she will attend once she is finished with preschool – there is no school program near us that sounds like a god fit.  She is making progress now, thanks to the intense level of support she is receiving.  How do we leave that behind for a mystery? Right now, our best plan is that she continues in preschool an additional year, until she is nearly 7, since we know her needs are being met there.  It would give her a year to grow and mature a little more before unleashing her on a bigger school.  Her IEP team (10+ of us!) will come together a few more times over the coming months, tour possible programs, watch her progress, and discuss our options as time goes on. After that, there are decisions to be made, priorities to be decided.

We requested a behavioral evaluation.  We are very concerned about some of her behaviors, especially those that are dangerous (like walking into streets), self-injurious (like biting her hand when she is frustrated, to the point of calluses and broken skin) or painful to others (pinching, biting, smacking, hair-pulling).  She is constantly searching for sensory input, whether it is loud noises, vibration, or tight squeezes; this deep need for incoming sensation drives her and us to keep looking for the next new feeling, and it never seems to completely satisfy her.

She will also be evaluated for an Augmentative and Assistive Communication (AAC) device.  They will test to see if some kind of picture communication system (either using a tablet or just printed pictures) could help her express herself better.  Since her receptive language (what she understands) is much more extensive than her expressive language (what she uses, both speech and sign), this type of device or system might give her a way to communicate more.  We were hesitant at first – no more devices! – but see her frustration, and hope to find a way to give her more ways to communicate.

She is still small.  Her weight is about the 50th percentile for weight, but only about the 10th percentile for height.  We are backing down on calories to find some balance. Her doctors are monitoring her height closely, as many kids who have been through what she has take growth hormones.  She lost 2 teeth over the summer!  The big, new teeth in the front of her mouth look out of place…and are pushing the other teeth in her still-tiny jaw out of place, too.  We’ve been referred to a more specialized dentist.

Chris and I are still trying to learn what normal life with Scarlett means.   I have moved to teaching first grade from kindergarten.  My heart was torn over this decision, in part because the kindergarten students I would be teaching are 5…and I would be face to face with Scarlett’s differences every day.  I was afraid, anxious, and just overwhelmed at that prospect, so instead of facing it with a brave face, I fled.  It wasn’t the only reason, but it was a piece.  I am enjoying the change, embracing the opportunity to push myself a little more.

Chris is still the full-time manager for Scarlett.  He drives her about 90 minutes to school each morning, then hangs around the school (volunteering in classrooms, taking classes with other parents, and even being hired to do some work in the business office lately), then drives her home.  After the last several months of this strenuous schedule, we have a new schedule in place that we hope will begin soon; it includes a few hours of her school’s on-site day care 2 days each week, and a chauffeured (taxi) drive home (compliments of the school district, which currently pays for our mileage).  This, in conjunction with 30 hours a month of respite care at home, help to give him some time to make phone calls, go grocery shopping and just do something for himself each week.  It’s an exciting prospect for us both!

On vacation in Maui

 We are still learning the ins and outs of the “system” for special needs children.  System seems like a joke, since there is very little connection from one step to the next; there is no guide, no manual, and very few experts to which we can refer.  We currently deal with:
  • California Children’s Services (CCS) – medical services for medically fragile children in California.  Scarlett is under the “full scope” coverage, which means most medical appointments, procedures, medical therapies, appliances (like orthotics and hearing aids) and medications are covered
  • Medi-Cal: Chris receives pay via In Home Supportive Services (IHSS) to make it possible for him to stay home and care for Scarlett.  He gets paid for performing all of the needs that would otherwise require specialized care (dressing, diapering, tube feeding, food preparation, medical appointments, etc.)
  • Regional Center of the East Bay (RCEB) – County-based services for kids with special needs.  Currently provides diapers (and pull ups!), 30 hours/month respite, and soon a full time aide to allow Scarlett to participate in the “regular” child care offered at her school.  When CCS officially declines feeding therapy twice, we can apply to have it covered by RCEB.
  •   School District – Provides out-of-district preschool, including speech therapy, occupational therapy, physical therapy, behaviorist, and transportation to school.

It’s a full time job to deal with the paperwork, phone calls and appointments.  For instance, Chris has made follow up phone calls, e-mails and office visits for over 7 months waiting for an approved document…and it has still not arrived.  Every time we are told it is in the mail, it doesn’t arrive.  So we call again, wait for a call back, clarify what is needed next, yet again, and wait, yet again.  If it is this difficult for us, I wonder, what would it be like if we did not speak and read in English?  What if we simply could not afford for him to be home to make the endless phone calls?  As we have seen for nearly 5 years, the system in place is not intuitive, and parents must often fend for themselves.

We chose to throw a birthday party instead of a blood drive this year.  Scarlett understands cake, candles, and the Happy Birthday song, and so we wanted to give her a chance to enjoy that.  We don’t really have the bandwidth for two big events, so party it was.  Last weekend, we surrounded ourselves with Bubble Guppies and friends.

She had a blast.

From here, we can only go up.  We are watching, practicing and trialing to learn how Scarlett learns.  We are trying to celebrate even the smallest triumphs, because some days, we need to distract ourselves from the struggles we encounter.  We worry.  We take turns being the one to panic over simple things like fevers and upset tummies.  We teach her jokes and tricks to make her giggle. We try to appreciate her as she is, find joy in her now, rather than focus on what to work on next…and sometimes we succeed.

 I wonder where we will be in 5 more years.  As long and arduous as it has been, I look at her and can’t believe this climbing, chatting little person is the frail baby I held back then.  She’s so different, so strong.  I’m different, too.  We are taking the next steps together.