Connecting

I can only imagine how difficult it would have been to have a child with a brain tumor (or any rare condition) before the internet. Blogs and Facebook have become harbors of support for families like ours, and somehow, once you start, it's hard to stop looking for connections to others in similar situations.  It would have taken me years to figure out how to transition Scarlett off of the formula without the tube-feeding pages. I am a member of a Yahoo group for Pediatric Brain Tumors, with over 1,000 parents looking for some kind of connection, or offering their experience and support.     Someone might have something new to try, a new idea or treatment, a doctor we haven't talked with; others come to us looking for just that all the time, and we are all too glad to share. Outside of the hospital or special camps or conferences, it is the only place where we can find anyone who can commiserate with what we are experiencing.  People we have only met via Facebook and blogs know more about our daily life than some we see every day.  It is a community, with ties between parents, children and doctors that outsiders will never understand.

Unfortunately, it is also a group that experiences an inordinate amount of loss and grief.  It feels like each week, a new child that I have followed, rooted for and watched fight relapses...and now we are members of that group, too.  Last week, yet another of these amazing children found out that their treatment is not working, and the tumors have continued to grow despite the doctors' best efforts.  I have never met her, but I have seen pictures of her, read her mother's joys and worries, and waited anxiously for updates.  I will continue to read as her next treatment options are explored, if there are any, and hope that the next phase is as easy on her as possible.  And I will continue to fear that we are next.

There is an amount of distance I have to keep from these other children fighting similar tumors to preserve my own heart.  Maybe it is selfish, but I feel like I can't get too involved without it igniting more pain.  I read and reread updates, and talk about many of them around the house as if we are close friends, but have a very hard time connecting directly.  Very early on, Scarlett's doctor warned me of this; as I described one of the stories I had been reading, she gently said, "Be careful reading those."  I understood her implication: these are not stories that typically end well.  Their struggles are too personal for me; seeing other kids suffer brings back so many painful memories and fears from the not-so-distant past.  Even worse, it makes it hard to overlook the possible future we are constantly facing.

There is no denying that we are still living on the precipice of disaster.  Scarlett's first in-treatment MRI is Friday, and like so many times before, it will determine the next step in our lives.  We hope to see no tumor growth, just the same dark expanse where there was once a tumor, and where there should be healthy brain.  If just one cell remained, and if that one cell is impervious to this new chemo, we could be uprooted yet again, and the next step remains unclear. 

At some point last year, I thought we might just be in the clear, safe from what this tumor has done to us.  But since it reared it ugly head once again, I feel convinced that it will always cast a shadow on us.  Brain cancer is not who Scarlett is, but it affects her every single day.  Not a single day has gone by since she was two months old that I have not through about the tumor and what it has done to her.  I know the other parents share the same fears and worries, and I am grateful that they have chosen to share. 

V-Day 2013

If you have been with us a while, you may remember that Valentine's Day has become more a legend than a holiday for us.  To recap, on February 14, 2010, Chris and I learned that we were expecting an unexpected (but exciting!) addition later that year.  One year later, on after 4 surgeries and a nasty bout of RSV, we celebrated Scarlett's first Valentine's Day with her very first dose of chemo.  And finally, last year, that sneaky little Cupid made sure we were together - Scarlett had her g-tube surgically placed that day.

So, for weeks, we have been cautiously approaching, awaiting whatever doom may lay ahead.  Would it be another surgery?  How about an unexpected MRI?  Maybe a day full of appointments, topped off with a little puke?  

I am happy to report that V-Day 2013 has officially passed uneventfully.  Scarlett went to school, looking heart-tastic.  

Even her shoes have hearts!

Her bag is full of valentines for her classmates, teachers, aides and school directors.  Over the weekend, I made a little project out of it - Fruity Pebbles Treats (more colorful and flavorful than Rice Krispies!) cut with a heart-shaped cookie cutter.  Treat bags from Target, blank stationary with stickers and some kindergarten teacher writing, and - BAM! - preschool valentines.

I hope the kids like them as much as I did!

After school, she had labs.  Her neuro-onc NP has arranged for us to have her labs drawn on non-chemo weeks at our local medical office, rather than having to drive across the Bay for a 10 minute procedure.  There was one nurse who knew how to draw from a port, so Scarlett has a standing appointment with that one nurse to have her labs drawn every other week.  Another perk f having a team that is fully committed to making Scarlett's life as easy as possible.

While Chris chauffeured,  I was at work.  I went to work today with no voice.  Not just hoarse; when I talk, nothing but whispers come out.  Just take a minute to imagine the challenge of managing a Valentine's Day party and activities with 26 5-year-olds without using my voice...suffice it to say, it was a long day, and I am taking tomorrow off to recover.  The highlight of the day, by far, was the deliver of roses to my classroom from my own Valentine...he's the best!

So now, Scarlett is in bed, Chris and I both have a glass of wine, and we are watching The Daily Show...most anyone would think it was a boring way to spend a Valentine's Day, but for us, it is just right, and the best we've had in years.  Well, there was a little puke, but that's just a normal day around here.

Round 2

 This is our view lately:

That's Scarlett, heading straight out the doggie door.  She has gotten so fast, we can barely catch her (and have had to go looking for her more than once.)  She doesn't care if it is cold and dark in the garage, or if dogs are waiting on the other side. It has become a game of chase, and most days, she is winning! 

This week's appointments included a visit to the neurosurgeon and audiologist.  Her neurosurgeon is very happy with her healing after her surgery in December, and does not need to see her for 6 months.  We have never gone 6 months between neurosurgery visits, so I will keep my fingers crossed that we can stay away that long.

Audiology brought more good news.  Her hearing has been difficult to test for the last two years, as she was too young to rely on behavioral results - gauging her hearing levels based on her reactions to tones played through big speakers.  We have done several ABRs, which test her brainstem response to different sounds, but they require anesthesia, and are therefore much more dangerous.  A few months ago, we decided to switch audiologists, and it has made all the difference for getting more detailed and accurate information about her hearing.  The new office is able to do much better behavioral tests, and measured her hearing as slightly better than in previous tests - moderate, rather than moderate-severe.  It's a minor difference, and doesn't change what we are doing with her hearing aids or school, but gives us a better idea of what she actually hears.

On Friday, she began Round 2 of chemo (her third dose in the twice-a-month plan).  The appointment was not until 12:40, and then with the typical delays (and the non-typical, like waiting for Scarlett to produce a urine sample), the actual infusion did not start until nearly 3:00pm.  We did everything we could to entertain her for the hours she was trapped in the bed, but her favorite game was "Throw everything on the floor so mommy or the nurse have to rinse it."  Fun!
 

Her psychedelic t-shirt is from ComfyCozys.  They make shirts for kids undergoing chemo who have port catheters.  There are two zippers on the chest to allow access to her port without having to strip off her clothes, as well as holes in the side seams to allow the wiring and her feeding tube to come through untangled.  It worked great, and we are very thankful to Lorraine from ComfyCozys for getting us the shirt so quickly after we heard about it from one of our readers.

At the end of a very long day, Scarlett showed us just how far she has come in this journey.  The nurse had to take her blood pressure before discharging her.  Scarlett stretched out her arm and held it still for the entire squeeze.  When the machine stopped, she pulled at the velcro to take it off.  It left me with mixed feelings - she is so relaxed and agreeable, which I love and am grateful for.  However, no toddler should be so used to a blood pressure cuff, or should need a special onesie that allows access to all the medical access points.  It's just another reminder of how different her life is than we ever imagined it would be.

Staying Busy

Apologies for the long delay since my last post.  Keeping up with our daily life has been as much as I can handle.

We went in for the second dose of chemo on Friday.  It was a very long day in the hospital, followed by an additional appointment at the clinic across the street.  Scarlett was basically perfect all day.  She handled the chemo beautifully, stayed reasonably calm while trapped in a hospital bed for 6 hours, and then self-entertained while we waited 45 minutes for the GI doctor.  She was only briefly sick that night, but she felt good enough to crawl straight out the doggie door for the first time.  By Saturday morning, she was feeling great and has been since.

Scarlett with her necklace and her doll all dressed up for chemo.

Playing in the mirror while we wait for the doctor.

The best news of the day was from the much-delayed GI and nutritionist: don't change anything.  Scarlett is growing perfectly (just crossing over 25 pounds), and they are 100% supportive of our homemade blended diet for her g-tube.  We even taught the nutritionist a thing or two about how we feed Scarlett away from home using baby food pouches - a clean and easy solution to our busy schedule.  It has been nearly a year since we last met with a nutritionist, so we were prepared for some suggestions.  It is such a relief to leave a clinic with no changes to our routine - a very rare event!

Last week, we needed a distraction, so we went on an adventure.  Since we all had a day off from school, we decided to visit the San Francisco Zoo.  It was a gorgeous day, sunny and warm.  After seeing all the animals, we headed across the street to the beach (yes - probably one of very few places you can see giraffes, gorillas and the Pacific Ocean within a few steps.)  The sunshine was a welcome change for us all, and we thoroughly enjoyed it.  I especially enjoyed playing with my new camera.

 

We have some difficult days here and there, letting the unknown creep in on us.  It's hard to keep pushing past it, but I don't really have any choice.  I can't wait to feel some kind of relief, some little sign that things really might be okay for more than a few days.  Until then, just one foot in front of the other. 

First Dose

It seems our concerns were unfounded.  Or, at least, premature.  Scarlett has come handled the first doses of chemo like a champ.  As if I should have expected differently!!

When I arrived at the hospital after work on Friday, Chris and Scarlett had just been put in a room.  Scarlett tolerated her port access and lab draw, and was ready for chemo.  It took a long while to get everything in order, so we spent a lot of time waiting with an impatient little girl, but she did as well as could be expected with toys, Yo Gabba Gabba on her iPad and snuggling.  We were in the hospital for more than 7 hours, then sat in traffic for 90 minutes when it should have taken 20, so it's a miracle we got home with any sheds of sanity.

She was pre-medicated for nausea, just in case. Then she got both 90-minute infusions back to back.  Around the time the chemo began, her nurse practitioner came in to check on us and discuss some of the last details.  She stayed for nearly an hour, answering our questions, discussing the schedules and side effects we should expect, and looking at pictures of Scarlett (a favorite past time of us all!) 

After talking with her, we have a much better idea of what we are looking at.  The main talking points:

•  She will get three different drugs:  Two chemotherapies - temador and irinotecan - and Avastin, which is intended to stop blood vessels from continuing to feed the tumor cells.
• She is scheduled to get infusions of Avastin and irinotecan every other Friday.  Temador will be given for the first 5 days of the cycle at home.
• The most significant side effects we are watching for are vomiting and diarrhea - icky, but not unbearable. There are several other possibilities, including hair loss, fatigue, slow wound healing, and nose bleeds, to name a few.  Eventually, we will have to closely watch her blood counts, but she should not (fingers crossed) get as low as in her first chemo, and we should be able to avoid blood transfusions.
• She is currently scheduled for 8 months of this routine, with MRIs to monitor for tumor progression (or, we hope, lack thereof) every two months.

So far, she has handled it all so well.  A little throwing up, and tonight a tiny nose bleed, and certainly some sleep and appetite disruption.  It's hard to attribute things to chemo, or just to Scarlett.  Did she stay up until 11 last night because she felt bad or because she's Scarlett and she does that sometimes?  Is she avoiding eating because she does it regularly, or because she is genuinely not hungry and nauseated at the thought of it?  

We'll never know, but it has made us a little hyper-vigilant.  We set up our video baby monitor again, after several months of not using it, so that we can easily check on her without waking her with an open door.  I frequently feel the need to check on her before bed, just to make sure everything is okay.  We also turned her car seat around to face forward.  I was not too keen on this, as I am well aware it is safer to be rear-facing as long as possible, and at nearly 25 pounds, she is far from the limit for rear-facing; however, she is two, so she passes the recommended age, and she spends so much time in the car (at least 2.5 hours a day for school and therapy) that it made us feel better knowing we could see her easily on long drives.  She loves being able to see us, so at least she is happy.

We are taking it one day at a time, still watching her like hawks.  If it could be like this for the next 8 months, we would be in good shape.  There's no way I am going to bet on it, but at least so far, we are feeling confidant.

One down, 15 to go.

Round 1, Take 2

The time has come.  Scarlett begins chemo tomorrow.  She will get two drugs via infusion (given by IV directly into her port), then one will be given at home via g-tube.  We aren't 100% sure what it will be like.  They tell us it won't be anything like what we dealt with before, but I am skeptical...I guess I can't imagine it being any better. 

I have to work tomorrow.  It's one of those days that I will have a really hard time focusing on my job, but will have to make it through.  Luckily, it's Friday, and we hang a little looser in kindergarten on Friday!  As soon as my students leave at noon, I will make my way to the hospital, where Chris will already be with Scarlett.

The infusions are each 90 minutes.  That means that with prep time, fluids, pre-medication for nausea (it's expected to come on quickly this time), we will be there 4-5 hours.  I have yet to figure out how we will entertain Scarlett in a hospital room, connected to tubes and wires, for so long.  Usually we have the benefit (if you can call it that) of sedatives and pain killers.  I doubt she will be incredibly cooperative, so we are packing a bag of entertainment to try to help.

Thankfully, she has been so happy all week.  She absolutely loved getting to go back to school.  She has played her heart out for the last few days, and is full of smiles.

Not me, though.  I have been a mess for several days.  I have been distracted, short-tempered and tired. I can hardly look at her without getting choked up.  I have been frantically taking pictures and videos just in case we never get to see her as healthy as she is now.  I know it is grim, pessimistic, sad...whatever you want to call it.  But for me, it feels like the only chance I may have; we can't go back.  As she giggles and scoots, I keep thinking how cruel it is to make her sick when she cannot understand why.

There is a point in a traumatic experience when you can't cry anymore.  There is no point - it no longer provides the emotional release it used to. You know that it will not solve anything.  It drains you of the last shreds of energy you have saved up for the next stage, and you just can't afford to lose that.  I have cried everywhere over everything with everyone.  I have cried in movies, in meetings and in the shower.  I have cried more in the last two years than many people do over many decades.  I've reached the point that I just get it over with when I'm ready, get it out of my system for a while, then move on.  And there is no end in sight.

Scarlett never ceases to surprise me.  She is 24.8 pounds and around 32 inches long.  She is in the last few weeks of teething ever - finally!  She learned to suck on lollipops this week, thanks to a school friend's birthday; this is a skill we have actually been practicing to help her swallowing.  She has also learned to cruise furniture while standing - no surface is safe if it is below waist-high!  She signs "want" when she wants more - whether its food, singing or playing.  She sleeps through the night every few days, but generally likes to have a chit chat party around 3 am.  And she rarely naps.  There's just too much to see!

This is my beautiful, amazing girl last week. She put on quite a show for this shoot.

Thanks to Krista Lucas Photography for always being there when we want to capture a moment.

New Year

Happy 2013 everyone!  We're just getting back into the swing of things after the holidays.  We had a nice visit with Chris' family, and then a fun little New Year's Eve of fondue and wine with friends and their 2.5 year old twins (making me appreciate more and more my one crawling kid!)  Now I am back to thinking about school, getting my classroom ready once again (it needed some TLC after my distraction before the break); it's also time to get back to the business of Scarlett's new treatment.

Today, we had a follow-up appointment with her neurosurgeon.  He says her incisions are healing well, and that she is safe to start chemo from his perspective.  He will see her in a few weeks when the healing is further along - scabs should be falling off (lovely) and skin closing - to make sure she is still infection-free once she begins chemo.

He confirmed that the tumor pathology came back as recurrent glioblastoma.  No ifs, and or buts.  Her oncologist has yet to get a sample for second pathology, so there are still some oncology-specific questions awaiting answers, but we know what we are dealing with.  However, he also showed us the post-operative MRI images to show us that the tumor, along with a margin of additional tissue for good measure, was completely removed.

Tomorrow, she will have another MRI at LPCH; it was scheduled months ago, and we all agreed it was not a bad idea to get some pictures of what is happening in her head before starting chemo.  We hope to see no additional tumor growth from the last three weeks.  It is the first time her new port will be accessed.  I hope she is as tolerant of the numbing cream, plastic wrap and giant needle as she was before...

The plan is still to begin chemo on January 11.  Scarlett and I will both begin school again on Monday, so it is back to the grind for us all.  We will once again be trying to find a new normal, a way to get through this next phase with our sanity intact.

Two years ago this week, the first gigantic tumor was removed in two 12-hour surgeries that nearly killed Scarlett.  She was only 11 weeks old...I know I posted these pictures a few weeks ago, but I keep going back to them.  I remember so vividly what it was like in those first awful weeks...we have come so far.

Jan. 4 2011: the night before the first big surgery (she had already had a biopsy the week before).  She couldn't hold her pacifier yet, but she would hold my finger as I held it for her.  By this pint, she had lost the ability to lift her head, visually track, and was having seizures that we did not know about.

A few days after the first surgery...in a warmed newborn bed, so swollen, unable to move her eyes, left arm/leg, or breathe on her own; severe seizures, getting blood transfusions around the clock.  The nurses in the PICU, who meticulously cared for her for the three weeks she was there, and every time since, recently told me how scary it was for them in those first days, that the doctors had prepared them for the worst.  So grateful for their compassion and bravery.