Monday, July 30, 2012

Playing Catch Up

Since the last 20 months of her life have been anything but routine, Scarlett now has a lot of catching up to do.  Today we took a big step toward that with her first vaccinations. 

We have waited a long time for these vaccinations.  In the early days, she was scheduled to get her shots on the standard schedule - Hepatitis B at birth (which she got), and then the next round at two months.  We showed up at that two month well check, and, well...things took a different turn.  From that point on, we were told she should not have any vaccinations because they would be rendered useless by chemotherapy.

Vaccines are given to help the body's immune system create antibodies to diseases like influenza and polio.  With antibodies, the body is able to fight off any potential infection to those strains of disease.  However, when the immune system is compromised by chemotherapy, it cannot create the necessary antibodies intende by vaccines.  This makes the vaccine ineffective.  Scarlett's neuro-oncologist told us early in her treatment that she would not get any vaccines, other than for the flu (apparently the risk of flu is so much higher for kids on chemo that giving the vaccine is standard practice, despite the lower level of immune response; even a little bit of immunity is worth it.)

So, we waited.  Earlier this year, as we neared the end of chemo, we discussed the vaccine issue with both the oncologist and pediatrician.  They agreed that we would begin 6 months after chemo ended, once Scarlett's immune system had recovered.  Since she is older and bigger than typical babies getting first vaccines, she is on a different schedule, based on the recommendations from the CDC for children after chemotherapy.

I have been nervous about it, mainly because I don't want her to get sick.  I know that the risk is very low, but I always feel like we are waiting for the next crisis these days.  Introducing anything volatile into her system is counterintuitive.  However, the threat of exposure to something contagious is also increasing, as she is getting out more, and will be going to school.

Like always, she did great.  A little crying, a little nap, and now she seems fine.  We're on the lookout for any reactions, but hopefully she is on the road to immunity!  She will get the next doses at her two year well-check in October.

And that brings me to an announcement!  

Scarlett's 2nd Birthday Blood Drive
Saturday, October 20, 2012
First Presbyterian Church of Newark in Newark, CA

Along with the Stanford Blood Center, we will be hosting our second blood drive in honor of Scarlett.  Last year, we had over 120 people come out to donate blood, and collected over 100 units for patients like Scarlett.  This year, the blood center has seen what we can do, and will be increasing the seats available for donors by bringing their bloodmobile!  We are hoping we can reduce the wait time for donors, as well as try to collect even more than last time!  Like last year, we will hold a raffle to raise money for the Pediatric Brain Tumor Foundation, which helps fund groundbreaking research for brain tumors in children.

Can't make it?  That's okay!  Since our goal is simply to encourage blood donation, you can participate wherever you are by giving blood!

We have just begun our preparations (as if things weren't busy enough for us!), but more information will be coming soon.  Right now, we are looking for help to make this the best event it can be.  Help like...

- Donations of raffle prizes
- Volunteers to help set up, serve birthday cake and/or clean up
- Help getting the word out!

If you want to help, you can e-mail us at ScarlettGrace2010[at]gmail[dot]com.


Friday, July 20, 2012

21 Months

Scarlett is 21 months old!  She weighs 22 lbs, 14 ounces.  I'm not sure how tall she is, but certainly taller than before -her pants all hit just to her ankles instead of needing to be rolled or scrunched.  She hasn't had any new teeth come through - still 16 (which her pediatrician was surprised to see; apparently more than average, especially with her history), and she still grinds them like crazy.  She's wearing 18 month clothes and size 4 shoes.  She likes to stand holding the windowsill or crib rail, but has still not decided to crawl anywhere.
Scarlett and Cosmo were entertained by the street resurfacing this week
This month we felt very vindicated in our choice to change her diet from Pediasure formula to all blended foods.  Since her only struggle with eating is oral-motor skills (she doesn't choke, doesn't aspirate or have trouble with textures), every doctor has been on board with the change, and is happy as long as she continues to make growth progress.  We don't count calories, track protein, carbs or fats.  Her daily blends incorporate everything from whole milk, yogurt and applesauce to quinoa, nectarines, prunes and kale; we add milk powder (for extra calcium without volume) and flax meal (for omega-3s and fiber) to most meals.  Since we started back in May, She has gotten taller and gained more weight than she has over the previous 3-4 months combined (back onto the growth charts, between the 10-25th percentiles); her hair is growing like crazy (we're debating the first cut soon!), and her nails are stronger.  She hardly ever throws up anymore, and she seems much more alert, more engaged in the world around her, and has more energy than ever before.  She's still primarily a cheerio, cracker and dried fruit eater, but she is getting better with spooned purrees, even eating it directly from the little squeeze pouches when she's really interested.

She's turning into a two-year-old before our eyes, insisting on more independence, but needing comforting and reassurance from us as well.  I feel like she is often frustrated by her baby body wanting to do big-girl things, wanting to communicate but not being able to find the words (and not signing at all yet).  As she's getting bigger and older, her delays are becoming more apparent and more difficult to accomodate with standard baby gear.  She's working hard to stand and walk, but she's outgrown most baby walkers, so her physical therapist got her a mini gait trainer to allow her to practice and strengthen her legs and hips (as she tends to lean forward rather than stand straight).  She's started a sneaky little game of pinching, then laughing when we say "no!" or "stop!". . . not fun at all, and something we are working hard to redirect.  She's getting trickier, too: tonight, she was playing with the phone in my lap.  I grabbed it and hit "END" when I heard dialing - she had hit the speed-dial for 911!  I thought I caught it, but when a police officer knocked a few minutes later, I was proven wrong.  We all laughed, assured him it was just our sneaky baby, and went back to her bath.  I hope all future encounters with police on her behalf are so simple!

The older she gets, the more pronounced her delays appear, especially when we see what other "typical" kids are doing at her age.  She's still very much a baby in a lot of ways; all of the most recent rounds of testing put her at about 8-10 months developmentally (areas differ - lower on gross motor and receptive language, higher on fine motor and expressive language).  She seems to be moving in slow motion, both developmentally and physically - she's taking her time, her brain acclimating to every stage for a while before moving on.  Everyone is still very optimistic about her long-term prognosis, but we often feel bogged down in the daily hyper-awareness of her deficits.  Despite her frustration and ours, we continue to press ahead.  She will begin preschool (at her current school for kids with hearing loss) 4 days per week in just a few weeks.

It has been a year and a half since the tumor was removed.  So much has happened since then, and we are so glad to be where we are versus where we could have been.

Tuesday, July 10, 2012

Summer Pictures

Last weekend, we had our friend Krista of Krista Lucas Photography come by to take a few pictures.  My dad is known for his extensive collection of hawaiian shirts (and year-long wear!)  When Scarlett was born, he bought a shirt for him and a matching dress for her (the rest of us graciously declined his offer for matching pieces...).  Unfortunately, he got an 18 month size, so it took a while for it to fit!  Scarlett's cousin Caleb came along in the meantime, so he joined the fun with his own matching outfit.  With both kids growing so fast, it was a now-or-never chance to get a picture of these three!

As usual, Scarlett did her best to avoid the camera...

I made this outfit a few months got the last few snaps on the way to the park!  She's also wearing one of my favorite accessories, a bow from No Slippy Hair Clippy - we haven't lost one yet!
But Little Mister Caleb was all smiles...

 ...when he wasn't eating the grass!!

Thanks Krista for working so hard to get a shot for us, despite the wind!

Friday, July 6, 2012


Hello!  Yes, we're still alive and kicking over here.  We're comfortably moved in, but still have a lot to do to get the old condo ready for sale - apparently my lime-green walls won't show well in an open house...who knew?!  Scarlett has made the transition well, sleeping through the night and sticking to her same schedule.  We were able to use our existing furniture to make ourselves pretty comfortable at my parents' house, though our storage unit is packed to the gills.  My summer school teaching job ends this week, so I'll be back home to help manage the necessary chaos.

We have been so distracted lately, we missed a big milestone for our little blog:  we have had more than 3 million views since we made our first post on December 20, 2010.  WOW!!  Thank you to everyone who has been with us through this wild journey.  We are so grateful for all the amazing support and kindness we have received from our blog friends.
Plus, we've hit another millions mark: the explanations of benefits arrived from the latest rounds of surgery and MRIs, bringing us past the $4 million mark for Scarlett's care since she was born.  It is actually much more than this, since we know we haven't seen all the EOBs, but it is still fascinating to us.  Since this is the total billed to the insurance, not what comes to us, we can look at it in awe rather than in fear!  I can't imagine where we would be if we had not had the insurance coverage we have bee lucky enough to have (and that, thankfully, cannot be denied to our high-risk child thanks to the new health care initiatives...)

We spent our Independence Day packing, drinking rootbeer floats and watching fireworks with friends.  Scarlett loved fireworks for the second year in a row, and stayed up extra late to watch them.

Our summer of stress continues this week as I have applied for some full-time teaching positions for the fall.  I'm not sure where that will go, but I am optimistic that the right decision will be obvious, and that Chris and I will be able to rearrange our lives to accommodate whatever comes next.