Crisis for Some, but Just Another Day for Scarlett

Round 5 of chemo is fading away, and Scarlett is coming out the other side. She's feeling pretty good overall...

Music time at school

Discovering self-portrait capabilities on momma's phone

Last week, Chris saw what he thinks was a seizure while Scarlett was in physical therapy.  Her therapist agreed that the dazed stare and unresponsiveness looked like a seizure.  We watched her all week, and still have not seen anything else like it. Seizures have come up several times in Scarlett's history, and we were clearly told before that unless they impede her development or daily function, we won't treat occasional seizures.  So, we did not panic, and made sure to discus with her doctor later that week.

When the appointment came around, her doctor was only mildly surprised to hear about a seizure.  With all of the surgeries, tumor damage and blood loss she has experienced over the last two years, seizures are essentially expected.  However, she did add something that caught me off-guard: in the list of possible causes, she mentioned the stroke she had during surgery.

I didn't know she had had a stroke!  It had been mentioned, once, in the PICU after her first tumor resection, but never confirmed.  Since that was at the other hospital, two years ago, it is obviously a known element of her chart.  How did we never hear about that?!  I was so surprised, and it was said as though we clearly should have known, I couldn't even ask more about it because I was so baffled.

I hate surprises like this, but it does not change anything we do now.  It just adds to our understanding, one more tiny piece of the Scarlett puzzle.  Unless any of this starts to disrupt her daily life, we just keep going the way we have been.

Otherwise, we discussed our regular topics: all of Scarlett's fun tricks, and vomit.  The puke still plagues us on a daily basis.  We have moved back to medicating every day to try to keep more in her.  I am so very, very tired of vomit but it seems to be a steady part of our lives for a while longer...we are expecting it to get worse before it gets better.

The best part of the appointment was being approved to bump chemo for a few days to take her on vacation!  We booked a little weekend trip to San Diego, where we will get to visit the zoo, the beach and best of all: meet Riley, another kiddo who has fought the same tumor as Scarlett!  His family lives across the country, but will be visiting San Diego for his Make-a-Wish trip.  They invited us to meet up for a play date, and we are going for it!  Even better, another of our GBM friends, Lily, is able to meet us there from their home in SoCal, so all three families will get to play!  It's still a month away, but I am very excited!

Chemo, Camp and Medical School

I realized far too late that I did not post the MRI results here.  I put it on Facebook, but not here, and I apologize to anyone who was worried.  The MRI was clear, and Scarlett is set for another 2 months.

She had chemo the next day.  It appears that the chemo is getting more difficult for her to tolerate with each dose.  She had a hard time this round - fussy, clingy, nauseated and constipated.  She has not been able to play on her own or entertain herself for a few weeks, meaning that we are constantly trying to find a way to get something done with her in one arm.

The next day, we headed out to Camp Okizu. This was our second time visiting this camp, and I am so glad that it is available, and that we are able to get ourselves there in the midst of treatment.  I grabbed the wrong memory card for my camera, so we unfortunately have no pictures, but a good time was had despite the photographic evidence.  We met several new families, and reunited with a few from previous camps.  This time, Scarlett was not the youngest, nor the most recently diagnosed.  She was, however, one of very few receiving chemo while at camp - we had to keep the pre-measured syringes and latex gloves in the camp refrigerator for the weekend.

Despite the chemo, Scarlett had fun scooting around the dining hall, getting passed between all the wonderful volunteer counselors and snacking on camp food.  We had hoped that she would get a chance to swim in the lake since it was so warm, but thunder and lightning came out of nowhere and forced us inside for the rest of the day.  Campfire was inside, but we still got to make s'mores in the big stone fireplace, so all was well.  

My favorite part of camp is the most difficult part - parent discussion sessions.  Having a chance to share, and hear others' stories, is fascinating, emotionally exhausting, and empowering simultaneously.  Each family's story is unique, but so many of our paths have had the same landmarks.  I (obviously) enjoy, or feel relieved and eased by, sharing what we have been through, but many do not.  To have to dredge up all the feelings that a child's cancer brings is difficult, and many choose not to participate or give minimal details for self-preservation, and I can understand that, too.  I so appreciate hearing how their families came through it, as it gives me some perspective on where we are and where we might be one day.

Camp was not our only chance to rehash it all this week.  On Wednesday, Chris and I made a trip to Touro University in Vallejo to speak with osteopathic medicine students about our experiences with pediatric brain tumors.  A parent from camp who is a student there was looking for other parents to join her in sharing with the medical students some of the issues that patients and their parents encounter.  We presented to a lecture hall with two other kids' parents about some of the particularly unique details of Scarlett.  Each of us had a few images from our kids' treatment - including Scarlett's MRIs and 3D CT scans - which got audible gasps throughout the talk.  After we finished speaking, the professor came up to explain to the first-year students a few of the terms we had mentioned - turns out we have a pretty advanced medical vocabulary!

The second half of the presentation was a Q and A with the students.  Interestingly, they wanted to know much more about the emotional and psychological toll on our families than the medical side.  It is hard to explain how helpless it feels in the first days of diagnosis; all three families dealt with different issues, and handled it differently, and none of us could say that we had done it "right".  In the end, I felt like in just the three stories they heard, the students were given a very god idea of the patient side of this kind of diagnosis.  I enjoyed doing it - if there was some kind of speaking circuit for this, I'd be there.

Now, Chris and Scarlett went to visit his mom for the weekend while I stayed home to catch up, both at home and work.  In texting back and forth, I've heard that Scarlett is not having a great time, as she tossed her last pacifier out of the car at some point.  Missing the first two pacifier weaning nights may be the most generous Mother's Day gift I ever receive.

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.

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.

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!

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.

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.

So...many...candles.

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.