Monday, January 28, 2013

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. 

Monday, January 14, 2013

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.

Thursday, January 10, 2013

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.

Thursday, January 3, 2013

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 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.