Thursday, September 8, 2011

When Doctors Disagree

Quick Scarlett update:  She seems to be feeling good still.  We're onto day 3 of chemo, and no real change in her good moods yet.  Her stomach has been a little unsettled, but that doesn't really upset her much.  Here's hoping the good times continue for a while longer!

Last week, we made the drive up to Oakland to visit Scarlett's primary neurosurgeon (she's seen a few, but this one took out the tumor - definitely a rock star in our book.)  He will eventually perform a cranioplasty (cranial reconstructive surgery) on Scarlett to repair the caved-in bones of her head.  His office calls every few months to check in on her while she is on chemo, so we got discs of her latest MRI at Stanford and took them for him to see.

We've learned a bit about people who choose different specialties in medicine (and please, if one of our fantastic, wonderful, amazing doctors reads this one day, know that we mean this all in the best possible way...).  We've laughed about this for months, but it is proven true again and again. 

Those who like to spend time with families, read long reports and not get very dirty are oncologists.  They laugh with us, they answer our insane questions and are patient when we ask those same questions again.  

Those who are highly focused, not big talkers and like their patients best when they're asleep are neurosurgeons.  Nurses jump out of their way or hide when they come around; their instructions are followed precisely, and at top speed (ICU nurses have literally run Scarlett in a warmed bassinet to MRI on demand).  We make lists of questions, and don't play games...this guy is busy.

(As best I can tell, those who actually sit to talk, know everything about and handle the day-to-day details of patients are Nurse Practitioners...I am pretty sure that's where I would find myself in the medical hierarchy.)

So, as we waited to speak with the neurosurgeon, we knew basically what we were in for:  he wants to do surgery ASAP.  He had the same reaction when he saw her a few months ago.  The minute he saw her he had his hands on her head, feeling the bony ridges that protrude above her left ear.  He pumped the reservoir of her shunt to feel it cycle CSF through the tube from her brain to her abdomen.  He felt the brackets and clips he installed to hold the bones in place...only to have them collapse when her shunt was replaced by the other hospital's neurosurgeons.  He is just unsettled to see Scarlett's head imperfect, not as he left it. 
March - Healing from tumor resection and first shunt

April - shunt infected, swelling began
May - Second shunt healing, fluid levels adjusted.

June - Left side completely sunken every day.  This is how her head will look until reconstructive surgery.

 He jumped immediately to his concerns.  All babies have unfused cranial bones at birth (this allows the big head to be pushed through the mother's narrow pelvis at birth, and is the reason many babies have "cone heads" for the first few days).  These bones progressively fuse over the first years of life.  Scarlett's cranium had to be taken apart to remove the tumor.  The bones are currently healing out of position, and if not repaired, will heal inverted.  The sooner we do surgery, the less healing happens, the easier recovery she will have.

He discussed surgery ASAP, as surgeons do.  He felt that since her scans showed no tumor whatsoever, that we should be able to take a break from chemo to do a portion of surgery, just to make it look better and get things into position for better healing.  He was serious and ready to make a plan that day.
We called the oncology team immediately, asked them to make some time to talk to us about how we proceed, as she has been under their care for the last 7 months.  They are adamant that Scarlett was absolutely not ready for surgery.  Her immune system is not stable.  Her bone marrow is not producing blood cells at a normal rate, and continues to be suppressed by chemo.  While her bones are not positioned correctly, they are not healing as fast as normal babies because chemo slows growth and healing.  The skull defect looks bad, but it doesn't hurt Scarlett, and won't change much over the next year.  There will be no benefit to Scarlett to rush surgery.

We also got some of the first details about what we are looking at for this surgery.  It will be at least one, possible two or three surgeries to reset the bones and place a new shunt.  Depending on the condition of the remaining bone, it may require synthetic or cadaver bone.  It will involve significant blood loss and result in severe face swelling.  She may be in the ICU for up to a few weeks, depending on how she heals.  It will be hard on her, harder on us.

Last time we saw him and this was his reaction, we panicked.  We were so set in the oncology plan, we were scared we had missed opportunities and were making life harder for Scarlett.  This time, we resolved to ask the doctors to talk, negotiate and decide together so that we had a cohesive plan, and no longer got differing opinions.  Luckily, by the time we got to the oncology clinic, this conversation had already taken place and the plan was decided: no surgery for at least 6 months after chemo is complete, so at least one year from now.

When we decided to pursue surgery at the second hospital, we knew it would be complicated to have the doctors work together for Scarlett.  We were encouraged by the fact that the two lead doctors were friends, and had know each other for years through working in various hospitals around the country.  They called each other.  They talk about Scarlett without our asking, and kept each other updated on her progress under their care.  We did not prepare ourselves for them to disagree.  Even though this was resolved without argument (it just isn't safe, no question), it was very difficult for us to differentiate the right answer from all the serious talk.  In essence, they are both right:  Her head needs to be fixed ASAP, and she needs to have chemo.  One just has to come before the other.  They are each independently focused on their own specialty - oncologist on the cancer, neurosurgeon on the brain and skull - but the two are indivisible.  We have to be sure the cancer is gone before we can focus on the "cosmetic" issues.

Everyone is still on the same team:  Team Scarlett.  I continue to strive for all our practitioners to work together on Team Scarlett as well as these two have.  They have different styles, different priorities, but one patient, and they want to do their very best for her.


Irene K said...

Maybe because you and your husband are so strong and smart....that is why that little Scarlett of yours is the same! Thinking of Scarlett in Austin tx, Irene

Denise D. said...

Wow...2 differing opinions, and you guys in the middle trying to figure out which opinion is the most "right". Not a fun place to be. Way to advocate for your that sweet baby of yours and make them work it out together!

ACE said...

I get cold chills every time i read updates on Miss Scarlett. Your strength is amazing. You all should NOT have to be making these decisions and worrying about all these things yet you do it with such grace. Someone like me says its not fair and why that poor baby and you are so composed and able to keep it together for your sweet baby. All 3 of you are true inspirations. I hope you know how many lives you all have touched. We have been following you guys since the beginning and it has definitely been life changing for me. The spirit of your family is amazing and i will continue to pray for you all, always!!

Krystle said...

I love your opinion of neurosurgeons, I had to laugh. We have seen 3. I have to say the last one at VCU..was not the 'norm' as far as neurosurgeons go. He has a great family life (when i'm not paging him lol), volunteers surgery in another country & is so personable, it's ridic!

I'm glad you have a decision but I can't imagine how much their indiscretion upset you.


April said...

I am very glad they were able to come to a consensus. It's nice when the doctors with Scarlett's life in their hands can have the same game plan.

Cristina said...

Thank you for the update! While I do read regularly I don't always post but it is so nice to hear that there is a plan in place and, most importantly, Scarlett is doing well and will continue to get better and thrive. She really is a cutie and you can see the joy she brings to your life and her happiness in her smiles! Continued prayers for your family and especially little Scarlett!