Thursday, December 20, 2012

Surgery #14

Yep, that's right.  Scarlett will go in for her 14th surgery tomorrow.  But let me back up...

Monday we met with Neuro-oncology at LPCH.  We are all dismayed that we have to have these discussions again, but we were glad to get to sit down with the doctors that know Scarlett so well and hear their thoughts.  

They have not yet seen the pathology from the tumor removed, so their assumptions are preliminary based on the first look from the surgical pathologist.  Everyone is expecting that this is the same tumor she had before.  We asked how this new spot came on so slowly after so long; they said their guess is that one or two rogue cells were left behind in the first surgeries (as the surgeon always told us could happen, which is why she needed all the chemo in the first place).  The super-speed duplication of those cells was staved off by the chemo, which ultimately may have changed the core biology of the tumor.  Now that she has been off chemo for several months, those cells were able to begin to multiply, though at a much slower rate than what we saw in the original tumor.

The doctors are expecting to see somewhat good news from this pathology - that the tumor cells have been altered in a way that makes it much less destructive, and easier to control.  Less likely would be an equally aggressive tumor as the original, which would be much more difficult to manage.  Worst case scenario, which no one expects based on the behavior we have seen over the last few months' MRI, would be the pathology shows this to be an even more aggressive version that would be nearly impossible to eradicate; treatment would be of little or no use. 

Somewhere in there, we found our hope.  We are not done yet.

As we expected, they had a plan that was vastly different from what we were told at CHO.  They feel that there are basically 3 options available.

Option 1 (LPCH's choice) is to begin a new chemo regimen.  It would include all new drugs from what she had before, more similar to what is given to adults with this same tumor.  It would be much less intense than what she did before - no (or very few) hospital stays, no blood transfusions, much less severe side effects.  They estimate about 10 months of infusions every 2 weeks.  She would still be able to attend school as long as she felt up to it, and could continue therapy and most all of her normal routines.

Option 2 (CHO's choice) is high dose chemo with autologous stem cell transplant.  This plan would have her in the hospital for several weeks as she got a lower dose chemo to prepare her body, then had stem cells retrieved from her bone marrow.  Then, she would be given an incredibly high dose of chemo - I saw it compared to getting six month's worth in a single dose.  That drug would completely erase her immune system, as well her hair, digestive system, could damage her skin, heart, kidneys, liver, and would require several blood and platelet transfusions....and hopefully kill the cancer cells.  Once she began to recover from the chemo, the stem cells would be given back to repopulate her now-erased immune system with her own cells. 

Because she would be so dangerously weakened, she would be in a specially-filtered hospital unit, protected from all possible germs.  Depending on how long it took for her to recover, she could be there for weeks or months.  She would not be able to continue at school or therapy.  Further developmental delays could present.  The risk of death from the sheer toxicity of the chemo is high.

The final plan, which neither hospital prefers, is proton radiation to the tumor bed.  This would be done at a hospital that offers proton to Boston, most likely (quite a ways from our home in the Bay Area).  Proton radiation is a highly-targeted to be as minimally damaging to surrounding tissue, but some radiation scatter cannot be avoided.  Particularly for Scarlett. this presents a danger based on the location of her tumor, which is very near some of the most vital parts of the brain (as if there are any unessential parts!)  She could sustain some even further delays in cognition and learning potential, and the long-term effects are still widely unknown.  It is generally considered a non-option (at least to our doctors at both hospitals, and many I have read/spoken with) to radiate a child under 3 in most circumstances because of the damage it causes to the still-developing brain.

We listened, asked tons of questions, and talked through what the ramifications of each decision.   By biggest concern is no longer what we do now, but what options we have down the road - I want a plan A, a B and a C so I know that there are still roads to be taken.  There were several very compelling issues, and we tried to be as objective as we could. 

There was one statistic we could not ignore: the survival rate for children with recurrence with all these treatments is around 20%.  We have to hang on to the hope that Scarlett is the one child in five who will pull this off.

With no decisive difference in survival rate, we decided that we want to impact her daily life as little as possible; she deserves the absolute best life she can have, and the hospital - no matter which one - does not offer that.  So, we have decided to begin the less-intense chemo plan at LPCH with the same doctors who have been overseeing her care for the last two years.  It is immensely helpful to us to stay with the team we have trusted all this time; seeing their interactions with Scarlett on Monday only cemented that feeling for me.  They laugh and smile with her, tickle and play peek-a-boo and know how awesomely wonderful she is doing right now; they have celebrated with us, and now are digging their heels in along with us.  

Her new chemo will begin sometime during the second week of January (she is already on the schedule to regularly have appointments on Fridays so that it does not impact her school schedule.)  This gives us a few weeks to get mentally prepared for more chemo, even if it is not going to be as bad as before.

Now for that surgery: she needs a new port placed before she can begin chemo.  Ideally, her head would have at three weeks to heal before chemo, and a port would have two...which means it needs to be in ASAP.  With the holidays upon us, the schedule for "elective" surgeries like ports (not an emergency, but necessary) is incredibly limited - in fact, so limited that tomorrow is the only option.  She is not even on the surgical schedule, so Chris and Scarlett will essentially be on stand-by at the hospital early tomorrow morning waiting for an available surgeon and operating room.

Crazy as it seems, surgeries like port placement just doesn't worry me that much.  The idea that she needs one is upsetting - we just got rid of the old one! - but I'd rather she have a port than need IVs in her arms and legs.  I have to be at work tomorrow, having a holiday cookie-decorating party with my kindergarten class while Scarlett is (hopefully) having surgery.  The hardest part for Scarlett is that she will not be able to take a bath for a few days - she just got her first real bath after the last surgery.

I can't say we are excited, or happy, or frankly, even incredibly optimistic.  There is still so much unknown, and until we know more, we will just get through each day.  We are calm, and we are okay for now.  We see this amazing little girl growing and changing before our eyes, and we are ready to fight for her.  Again.

And that amazing girl is where I want to end - it's been a while since I have given her stats.  Scarlett is now 26 months old.  She is 24 pounds.  She outgrowing 18 month-sized clothes and size 4 shoes.  She crawls full speed in every direction, and get from her back to her stomach to kneeling to sitting to standing with no problem.  She can stand up at a moments notice.  This week, her teachers were thrilled to report that she was clearly signing "more" during snack time; she started do it at home, too.  She seems to know what "gentle" and "no" mean now, too.  She has started cruising the furniture while standing.  She laughs hysterically when we eat anything from her hand, and when we tickle her, when we blow raspberries on her tummy and ... well, she laughs all the time.  She is determined to play in the toilet - not particularly fun for us, but blissfully normal behavior for a kid. 


Unknown said...

I hope she'll have surgery tomorrow.. and everything will go smoothly. Scarlett is very lucky to have you as her parents. You are in my prayers all the time. Good luck in everything you do!

Titus 2 Thandi said...

No choice is perfect, but under the circumstances, I'd also have chosen the one you chose:-( Pity it has to be done.All the best...

Melissa said...

Scarlett's stats are amazing! You guys are doing so wonderfully with her. Hang in there. You are doing all you can do, just hold on to hope and take it day by day. We're praying for her.

Unknown said...

praying for your family

child of God said...

Praying everything works out and these pathology results come in with good hope and chances.

Lifting you all up.

J said...

Aside from no tumor at all, hope is probably the best Christmas present. Hang in there, we are all right here hoping along with you. Here is to the best and longest life possible for Scarlet! Three cheers (one for Scarlet, one for Chris and one for Brandi)- you are all amazing!

smermom said...

I hope everything went well today! Praying for all of you!

Christa said...

Prayers coming your way! Merry Christmas!
--christa, oct. 2010 mom

MC said...

Praying for Scarlett! She is one tough cookie! Hugs from PA. Merry Christmas!

Abby said...

Sounds like you have some good options, considering the situation. It sounds like the choice you made makes the most sense from my uneducated perspective... quality of life is worth a lot!