Saturday, April 28, 2012

Surgery Schedule and The Port of Doom

This week has been so long, and yet I can't believe it's already over - I have so much that isn't done! 

First, Scarlett's big cranial reconstruction surgery is scheduled for just a week from now: May 8, 2012.  It will be done by the surgeon who removed the tumor at Children's Hospital Oakland, in conjunction with a very highly respected pediatric plastic surgeon.  That's just 9 days from now, and we are nervous and anxious, but glad to get it over with.  We don't know yet how many procedures it will take (probably 2 or more), how long we will be there (estimates are at 1-2 weeks, maybe more), or how they are going to go about fixing her skull.  We meet with the surgical team next week to discuss the details.

It was time for Scarlett's monthly blood tests, and it did not go smoothly at all.  Last month, we struggled, but got it on the third try.  This time, we weren't so lucky.

Tuesday, we went for a hearing test.  The doctor was running about 30 minutes late, but eventually we got Scarlett's hearing test done - no real changes, but we're not getting good data in behavioral tests (where Scarlett is observed for her responses to different tones and volumes), so she'll have a sedated brain response test next time to make sure her hearing is stable and her aids are adjusted properly.

Then we headed to the hospital down the street from there for labs.  We tried, but nothing drew back.  We'd done this before, so we knew step one was to put in medicine called TPA to break up any clots.  We were scheduled to come back the next day.

Wednesday, we went to occupational therapy, where Scarlett still refuses to drink anything.  Wet = no good for her.  She's sticking with dry crackers and dry fruit.  We've decided to stop trying baby food and just keep with whatever we're eating.  Maybe she'll find a flavor she likes more than animal cracker.

Then we headed back across the bay to the hospital.  We tried to draw back the TPA and get the blood...but nothing.  Just bubbles.  We weren't sure what to do, so we waited for further instructions.  Unfortunately, the decision was made to try TPA again, so we had to reaccess Scarlett's port (numb it with cream for 20 minutes, then insert the 3/4 inch needle).  Second dose of TPA in, then back home.

Thursday morning we met with the physiatrist who monitors her therapy needs.  She's sees Scarlett every six months to make sure her therapy goals are acceptable, attainable and that we have all the equipment necessary.  She works at the other hospital where Scarlett has had and will have neurosurgery, and knows the neurosurgeon well.  She suggested adding a procedure - injecting Botox into Scarlett's neck muscles - to her surgery schedule to help correct the constant head-tilt she has had since her tumor was weighing her head down.  Despite stretches, massage and growth, she has never been able to hold her head straight consistently.  We're hoping that the Botox will relax the muscles of her neck so she can re-learn her posture with her new skull.

Then we headed in for Day 3 of trying to get the port to work.  With fingers crossed, we accessed her port and tried to draw...but nada.  We waited for the message to make its way to the right people, who passed it to the next department: surgery.  Scarlett then had a chest x-ray to see what was going on.  Apparently, Scarlett has outgrown her port.  When it was placed, it was measured to fit her tiny 4-month-old chest (she was only about 12 pounds at that point!)  Now, her 18-month-old chest is much bigger, so the catheter is no longer is the correct position.  Lots of discussion, surgical consent-signing and more talk later, we decided that this port needs to be replaced.  We left that evening with plans to schedule surgery for early next week.

Friday morning, we drove to Berkeley (about 30 miles, but 60+ minutes with Bay Area traffic) to Scarlett's school.  After her class, we drove around so she could take a nap, since she had another appointment that day.  While she napped, I called the surgery scheduler to make plans for the port surgery.  She hadn't heard anything about it, had no orders, so couldn't, she said, there was absolutely no openings next week.  So, she said she would call our trusty neuro-oncology NP to see what we could do.  We returned to the school for a speech evaluation. Now that she has reached 18 months, she qualifies for speech therapy.  The evaluation went well - she has a few emerging words, is interested in noises, makes saliva bubbles and is generally just in good shape for therapy beginning soon after surgery.

Back on the freeway for the drive home, I knew to expect a call, so I had my bluetooth ready.  2 or 3 exits down the road, it beeped, and Trish, our NP, gave me the update.  Scheduling to replace the port will be a nightmare at either hospital, especially for something she doesn't really need.  I asked a million questions and we talked about it for about 30 minutes, but eventually came to the decision that her port will be removed for good and not replaced.  Ideally, we would keep it until at least 6 months post-chemo, but Scarlett, as usual, has her own schedule, so we're going to just go with it.  The hope is that this can happen during her big surgery to reduce the number or times she needs anesthesia, but if not, it will just wait until she's stable again.

SO, after hours of waiting in the clinic, 3 trips with $5 bridge toll, 4 port accesses, and a sit-down with a confused surgeon, nothing happened.  Can you believe that??  I'm glad she won't have to have a separate procedure, and that we an do our final week of therapy and regular life before her surgery as planned.  Throwing an extra surgery in to the mix was really throwing me for a loop.  Now, we're working on getting ourselves ready for hospital life once again - cleaning the house, packing, planning for Scarlett's entertainment (more on that later!).

Oh, and as if that wasn't enough, we're headed to a camping trip next weekend, returning the day before her surgery.  I think we've lost our minds...

Monday, April 23, 2012

Scarlett's Neet Feet

Scarlett got a present today.  We ordered them a few months ago, and we have been patiently waiting for their arrival, and today was the day!

These are her brand new shoes from Peach's Neet Feet!  Peach (AKA Madison) and her team paint custom shoes for kids fighting cancer.  They try to fit kids' individual tastes and give them a pair of shoes to wear during the hardest walk of their little lives.  When I saw someone else's Neet Feet, I couldn't order ours fast enough!

The gray ribbon is the symbol of Brain Tumor Awareness.  This sparkly silver one takes it up a fabulous notch!

Scarlett was fascinated by her new shoes (the first times she's ever had laces, and she couldn't wait to pull them!)

Checking out the sparkly music notes!

Peach started PNF just last year to brighten the faces of a few kids.  Now, she has done over 180 pairs!  The kids who wear them are often bald, in wheelchairs, hospitalized or feeling sick, but their Neet Feet are a source of pride and happiness.  Scarlett is too young to understand, but one day I will show her these shoes, how tiny they are, and remind her how far she has come.

Peach's Neet Feet accepts donations of money ($25-30 buys shoes for one child), as well as new canvas shoes (Converse, Vans, Toms, etc.) that can be decorated for a special fighter.  You can sponsor a child you know and be their "shoe fairy" by hand delivering the finished product. 

We are so proud to get to show off Scarlett's Neet Feet for Brain Cancer Awareness Month this May.  Every time someone asks about her fabulous shoes, it gives me a chance to tell them a little about Scarlett.  Awareness brings funding, funding allows research, and research finds CURES!

Sunday, April 22, 2012

Books for Children

A few months ago, I began looking for books to add to Scarlett's collection that dealt with childhood cancer.  It's not an easy topic to talk about, let alone to write and illustrate in an age-appropriate way.  These are the ones I have found so far.  I have read them all, and I gave an estimated age level for each.
  • Brave Just Like Me by Kimberly S Ruff, Illustrated by Stacy Venturi-Pickett and Leslie Sheets  A little girl shows us how she is brave though doctors, blood draws, medicine, NG tube, dialysis, x-rays, EEGs, surgery and therapy.  Cancer is not discussed, and we don't know what her diagnosis is, but she goes through many similar experiences.  Good for ages 2-7. 
  • My Brain Tumour Adventures by Sharon Dempsey, Illustrated by Gabbie Collins.  A little boy is diagnosed with a brain tumor, has MRIS, surgery, loses hair with chemo, and radiation.  Illustrations are all black and white; written in British English, so some terms are slightly different.  Good for ages 2-7.
  • Why, Charlie Brown, Why? by Charles M. Shultz.  Linus' friend Janice feels sick, and is diagnosed with leukemia.  Charlie Brown and the gang learn that cancer is not contagious, that Janice did nothing wrong, and that she just wants to be like the other kids.  This one deals with tough stuff, but it's all accurate.  Includes a Glossary of cancer-related words.  Good for ages 7-12.
  • The Lemonade Club by Patricia Polacco.  Based on the true story of Polaccos' daughter, a 5th grader is diagnosed with leukemia.  She and her friend share a special bond with their teacher, who is also diagnosed with breast cancer.  The class supports the girl by shaving their heads.  The teacher recovers, and the girls are braidesmaids in her wedding.  Good for ages 7-12.
All of these are available on Amazon (My Brain Tumour Adventures is out of print, so it's a little pricey, but available).  I wanted to have these on hand for Scarlett, her friends or any future students who may encounter such illness.   I'm always looking to add to my collection (I'm a bit of a kid's book hoarder!), so I'd love to know about any other resources out there.

Thursday, April 19, 2012

18 Months!

(I've been working on this post for three days!  Sorry it's so late!)

Little Miss is 18 months old!  She weighs 20 pounds, 11 ounces and is 29 inches tall.  We're moving to mostly 18 month size clothes to fit her chubby thighs and arms.  She has 16 teeth, and uses them to eat her favorite snacks: dried mango, purple star puffs, melon, and animal crackers (but still not swallowing any liquids).  Her favorite toys are her princess chair, the star stacker (she can now take the top star off by herself), and pretty much anything that makes noise and lights up.  She watches some Sesame Street and Yo Gabba Gabba when momma needs a shower or to make some dinner. 
She likes to stand, but it pretty stationary (she can't get up or down on her own yet).
She was fascinated by the view out the window on her first train ride - we had lunch with other families from her school at a pizzeria owned and operated by deaf people.  We got some good signing practice!
This month's biggest accomplishment is that she says MAMA!  It's rare, but hear it every day now.  We're working on DADA (and Grandma is pushing NANA) but not too much yet.  Over the last few weeks, we have also been noticing just how grown up she is looking.  Her hair is growing long enough that it needs to be brushed after every nap, and if we do it just right, she looks like such a little girl.  She is still (and will always be!) my baby, but the subtle changes in her face are becoming more and more noticeable.

The other sign of impending toddlerhood is her personality.  Boy, does she have a big one!  She smiles for almost anyone she meets.  She has a cooky little sense of humor that sends her into fits of giggles that continue until everyone has joined in.  She has become much more alert to the sounds and views around her (with or without her hearing aids) so she is constantly looking around to see what is going on.  She's become quite the momma's girl, too - if I dare walk by her without picking her up, I will hear about it!  Nonetheless, she still has a sweet spot for her daddy, especially when she first wakes up.  Most nights she still sleeps well, but some nights...well, she doesn't.  She fights going to bed, cries and cries, and then wakes up a few times in the night.  I am hoping this part is just a short-lived phase.  Either way, we have solidified a bedtime routine and that helps most nights.

It has been 16 months since Scarlett was diagnosed with a supposedly deadly brain tumor.  Did she ever show them!
Getting ready for CT
She has her doubts about the big machines now.

This morning, she had the first procedure to prepare for her reconstructive surgery.  A 3D CT scan was performed to give the neurosurgeon and plastic surgeon a good idea of how exactly the bones of her skull are situated.  It was a quick and easy procedure for her, but it marks the beginning of yet another bumpy patch in her life and ours.  We are working with her therapists and teachers to help prepare for ways to help her cope with being hospitalized, as well as a plan to get her back on track as soon as possible.  We're eager to get it all over with, but there's just no easy way to approach brain surgery.

Sunday, April 15, 2012


Scarlett refused to go to bed tonight, but it seems she had a reason.  She wanted to show us this:

There was always a little part of me that wasn't sure if she would ever really have language.  She has not really shown a lot of understanding yet, no signs and mostly just babbling since she was 3 months old.  The part of the brain that would normally control speech and language is theoretically missing in Scarlett's brain, so we had our doubts.  She proves us wrong time and time again.

And that smile gets me every time.

Thursday, April 12, 2012

Scarlett's First Vacation

Sixteen months ago, we were planning our "bucket list" for Scarlett.  She was only two months old, but we had just been told she had a brain tumor that could not be treated.  We had barely left our house with her yet, let alone do all the fun and interesting things we had hoped to fill her life with.  When I posted about it on the blog, it was a way to remind myself to keep my eye on how to make Scarlett's remaining days as bright as possible rather than wallow in the grief we felt.

Around that time, my dad told me that a friend of his wanted to help us do one of the things on that list - go to the beach.  They offered a hotel room so we could enjoy the beach comfortably with Scarlett.  This was overwhelmingly generous, and we were very grateful.  

Then, a few days later, everything changed, and Scarlett went in for surgery, then a year of chemo.  We did what we could, but she was rarely healthy enough to take out, especially over night.  A few months later, my dad forwarded me an e-mail that said the offer for a getaway was still on the table, whenever we were ready.  I saved that e-mail, but figured it would be a while still.

Then, last week, we realized the time had come.  Spring break meant far fewer appointments for Scarlett, and no after school tutoring for me; Chris was able to rearrange his work schedule, and we had a free day!  We made a last-minute request, and had a room.

Oh, and not just at any hotel.  At the RITZ CARLTON! 

The Ritz Carlton Half Moon Bay sits on cliffs against the ocean and is surrounded by golf courses.  It is only about 45 minutes from our house.
The staff had been told Scarlett would be coming, so they had this duckie waiting at the front desk for her (and glasses of wine for us!)
When we checked in, we learned we had gotten a complimentary upgrade to a room with a private terrace fire pit.  From our room, you could see right over the golf course to the beach.
Between check-in, naps, meals and the storm that moved in overnight, we didn't make it to the pool.  However, Scarlett got to swim in the giant bathtub, so she was happy enough!
The hotel was surprisingly kid-friendly, with high chairs, cribs and beach toys available.
Before the rain started, we fit in a little trek to the beach.  Scarlett rode in the big backpack for the first time.  She liked it so much that she fell asleep by the time we made it down tot he beach!

When we returned from our walk, a gift had been delivered - cookies, cocoa and a gourmet s'mores kit (including long sticks!) to enjoy at our little fire pit.  Thanks, mom!

One day, I will figure out how to get Scarlett ro reliably look at a camera and smile.  She was LOVING the soft feather bed, and was laughing as she rolled around...until she caught sight of the camera.  She had fun, I swear!
We roasted marshmallows on the patio in our pajamas and lots of blankets, since a wild storm was making its way in.
This rascal decided he wanted to try some s'mores, too!  He was very persistent - he actually climbed right up to our fire pit, flames and all!  Chris used the camera flash to distract him while I got Scarlett and all the food inside.

Thank you so much to Dawn for giving this wonderful night away!  We had such a great time!  I can't wait to go back to have s'mores on the big patio again when Scarlett is a little older (and maybe without the raccoon!)

We have one more short trip planned before Scarlett's surgery in May.  Preparations for surgery are already in progress - she will have a 3-D CT scan next week to help the surgeons plan how to reconstruct her skull.

Sunday, April 8, 2012


We dressed up in our Sunday best to celebrate Easter today.  I found her dress a few weeks ago and could not leave it had to come home with us.  Unfortunately, Scarlett woke up extra early at 5 am, so the Easter egg hunt after church was really not her cup of tea (and forget about her looking at the camera!!).  Nevertheless, we enjoyed the sunshine (which has already left us) and had fun with family.

She pulled each item out of her Easter basket.

She sat in her new chair.

The "Easter Egg" hunt was really more of an "age-appropriate toys scattered on grass" hunt, so she enjoyed picking things up and putting them in her basket.

Scarlett and her cousin Caleb are enjoying the same toys!

Caleb is almost 5 months old and getting so big!

Basket ribbons are much more exciting that mommy and her camera.

Daddy trying to keep track of Scarlett, his coffee and his glasses.

We are now home, packing for a little adventure we will go on tomorrow - our first overnight getaway since Scarlett was born!  I hope everyone had a lovely Easter!

Monday, April 2, 2012

Clouds Cleared!

This morning we went in to the hospital to try one last time to get the pesky port to draw.  We weren't feeling very optimistic.  However... drew perfectly!  Whatever was clogging it before must have cleared over the weekend.  What a relief!