Tuesday, April 30, 2013

It's That Time Again

Scarlett's MRI is tomorrow afternoon.  We hope for no change - a stable brain with no tumor.

Thursday begins Round 5 of chemo.  That means we are on the downhill slide of this routine - 4 months down, 4 to go.  Going to the hospital two days in a row is a bummer for Chris (he's single-parenting it, since I have to be at work), but there is a benefit of getting MRI results the day after the scan - anything to reduce the anxious waiting.

Chemo is early this week because we leave Friday for Camp Okizu.  This camp is a few hours away, so we will be on the road for much of the afternoon, but look forward to a great time with our camp friends.

It's a busy week, and we appreciate all the support we get from our friends here through the waiting, chemo and travel.

Wednesday, April 24, 2013

College Commercial

There is a new commercial for Target's education donation program.  In it, teenagers are getting their college acceptance letters (online, it seems - so much for the fat or skinny envelope, I guess.)  Their parents, friends or siblings are around them as they proudly declare, "I got in!"  

Will we have that?  It seems like a lifetime away, but I can't help but think about what the future holds for Scarlett.  We have met many parents, both at the camps we have the privilege of attending and online, who have fought similar battles with their own children.  Now, for many, their children are not kids any more, but they aren't really adults, either - they can't hold a full-time job, won't attend college, may never be able to live away from their parents.

We're only in preschool, and I have learned enough thus far to know that I can't predict the future, but I ask myself ...Will Scarlett go to her prom?  With a date?  Will she able to live independently?  College?  A rewarding and fulfilling job that gives her some personal satisfaction and challenges her?  Will people accept her with whatever deficits she may have and include her in "normal" society?  Will she find a partner who loves her the way she deserves?  Will she get married?  Have a child?  Will her life offer her the opportunity to make choices and decisions for herself?

Will she live to get a chance?

I try not to let the worries spiral out of control - it does no good.  Every parent worries about their child's future, so I know I am not alone.  Even typical kids have to grow up, and it's almost never the way their parents planned.  I am more motivated than ever to find the right schools and supportive professionals who can help her make progress toward more of her goals.  We have high hopes, and are devoted to surrounding Scarlett with as much love and support as it takes.  But sometimes, I wonder what the next phases of this battle will bring for her, and if I am strong enough to get her through it. 

Tonight, I'm thankful she is still so little.  It helps to know that the scary future is so very far away.  She's tucked into her mermaid quilt in footie pajamas with her doll and her pacifier, and that's enough for today.

Monday, April 15, 2013

Two and a Half

I can hardly believe that it has been two and a half years since this little lady came into our lives.  She is growing and blossoming every day.  Here's a snapshot of Miss Scarlett these days...
  • Age: 2.5 years (30 months)
  • Weight: 25 lbs. 12 oz.
  • Clothes: 18-24 months
  • Shoes: 5 
  • Bedtime: 8:00
  • Naps taken most days: 0
  • Likes: dolls, cars, pudding, necklaces, school, our dog, her papa Mike, throwing toys out of the bathtub
  • Dislikes:  Yogurt, brushing her hair, wearing shoes
  • Newest tricks: walking with her walker!, climbing on the coffee table, balancing her feeding syringes on end,  fake-blowing kisses
  • Signs known: want, more, eat, pacifier, momma, daddy, all done, happy, diaper...something new every week or so.
  • Surgeries: 14 (1 biopsy, 3 tumor resections, 1 cranial reconstruction, 5 shunt-related issues, 1 G-tube, 2 port catheters in, 1 out)
  • Months of chemo endured: 16 and counting
  • Next MRI: 2 weeks
So proud of this girl!

Tuesday, April 9, 2013

One Foot in Front of the Other

 Scarlett had physical therapy today.  PT has been rough for several weeks - she is usually cranky, and has been very resistant to work on her new goal of walking.

Today, however, she had a different plan.

She is walking!!  She is using the tiny therapy walker to get around all by herself (sorry it's a rough video - it was an action shot, and I was just glad that Chris remembered to video for me!  That's her lovely therapist Kathy in the video).  This has been MONTHS in progress, and we were really backing off on it because she was so resistant.  She has had a loaner set of ankle-foot orthotics (AFOs) to help her get upright and build strength in her legs for standing.  She hated them until today.  Doctors and therapists have been looking at her feet, watching her stand, checking her reflexes, all to be sure there wasn't something we were missing.  It turns out it was just Scarlett deciding when she was ready.

And it wasn't just at therapy.  As soon as she was out of the car, she hiked her way up the driveway.  Then she walked all over the backyard and the living room.  She has already discovered how to turn the walker to face a different direction, and she can go across the threshold of the sliding door.

Serious face

Checking herself out in the glass door.

Forcing her walker and her feet right over the door threshold.  Can't stop her!

She hasn't fallen, but we are expecting that to be the next lesson.

At the rate she's going, she'll be running marathons by her third birthday.

Saturday, April 6, 2013

Easter, Spring Break and Round 4

Spring Break is quickly coming to an end, and, like always, I am not ready to let it go!  Since Scarlett's school and mine had the same break, we got to sleep in every day.  We had very few plans, so we really got a break from our normally exhausting days.

Easter was quiet.  We got dressed up, went to church with the family, and Scarlett got to do an egg hunt with her cousin and friends.

Her Easter basket had no candy, but did have necklaces and bracelets, which she loves to wear.

Cousin Caleb was checking her inventory. 
Family pictures with a 2 year old just don't always go the way you plan... 

Thursday was my birthday.  Since it was my 30th (yikes!!), we toyed with making it a big celebration, but eventually decided to save for some fun in the summer.  We did get a day out while Scarlett stayed with Grandma.  We decided to visit the California Academy of Sciences in San Francisco, a museum we have not visited in a few years.  We got to tour the indoor rainforest, see a show in the planetarium, and feel a simulated earthquake (somehow not as nerve-wracking as when we have felt the real thing.)  

Golden Gate Park in spring!!

The indoor rainforest is very interesting, with butterflies and birds flying through.

The aquarium is always one of my favorites.

After the museum, we drove out to a movie theater we had been wanting to try.  At Vine Cinema, they serve dinner and drinks while you watch the movie from a couch in the theater.  We have always joked that we would love to start a movie theater for grown ups, with real food and drinks - turns out someone else had the same idea!  the restaurant next door, which prepares the food for theater patrons, offered a wine tasting and happy hour, so we were

glad to have arrived early.

Watching construction of the new hospital while waiting for chemo.
On Friday, we went in for the first dose of chemo in Round 4.  Everything went smoothly, and she is already perking up this morning.  At the end of this month, we will be half way through the scheduled treatment.  I am so happy that this chemo still has so little effect on her - no hair loss, no transfusions, no hospital stays, minimal drama.  We are still cautious, as complications can arise at any time, but we are glad we chose a treatment plan that allows her to live the most normal (for her!) life she can.

Wednesday, April 3, 2013

Jack's Camp

Last week, we went to the first family camp of the year.  We plan to attend three different weekends of camp this year, hosted by two camps for families dealing with brain tumors.  The first was Jack's Camp, hosted by a support group called We Can.  The camp site, Camp Arroyo, is run by the YMCA and The Taylor Family Foundation, and hosts camps for kids with special needs through the year.  The camp founder, Elaine Taylor, had a nephew named Jack with a brain tumor, so she decided to invite a group to use their camp in order to support the kids and families in the area.

The view from the dining hall patio
Past the pool, over the whole Livermore Valley

Scarlett exploring our cabin.
Watching the campfire
 The camp is beautiful. It is in Livermore, about 20 minutes from us.  It overlooks the hills, valleys and vineyards in the area.  There are wild turkeys and deer wandering through the camp, and there is plenty of space for kids to run around.  Campers stay in cabins with solar-powered radiant-heated floors, huge handicapped-accessible tile bathrooms and bunkbeds, and eat in the big dining hall where healthy food is prepared for us.

Meeting the chickens at the all-organic camp garden
Adventures for mommy and daddy, too!  We got to do climbing and a zipline during one of the parent sessions.

During the weekend, the camp staff and volunteers take the kids, both patients and siblings, to play while parents share their stories and share information, resources and support.  Meeting other parents (and their kids) is an invaluable part of these camps.  There are many issues we are dealing with for Scarlett that only others with similar issues can understand.  And, since Scarlett is the youngest in the group, we get a lot more insight into the issues that kids who have been through similar treatments are facing as they get older.  

It is emotionally draining, but also gives us a new energy to find new resources and solutions to the problems that we are all struggling with.  The children we see now, including Scarlett, are part of a trailblazing group; they are some of the first to survive these tumors, and there is no structure to support them yet.  The treatments our kids are going through, and especially what was done 10-15 years ago, has life-long effects; very few of the kids are able to lead independent adult lives. It is up to parents like those we meet at camp, whose kids are becoming some of the first adult survivors of childhood brain cancer, to lay the groundwork for what we hope will continue to be a supportive community for kids who have undergone such drastic treatments.

In a few weeks, we will go to a different camp, and then in September, we will get to visit Jack's Camp again.  We feel very grateful that these camps offer these weekends to us - some of our only chances to get away - for minimal cost to us.  We look forward to them all year, and are so glad that camp season has arrived!