Surgery Update

We are about 7 hours in. The updates from the OR nurse have all been positive, but include very little other than "Scarlett is doing well, everything is fine. It will be a few more hours." So, our update is just that: Everything is fine. It will be a few more hours. Thank you for the messages and support. We are keeping ourselves entertained by reading funny websites, keeping up with Facebook and reading. I'm grateful that my parents are here to help distract us as time ticks away. We'll update when we hear anything else.

Surgery #10

Scarlett's tenth surgery has begun. It took a while for the surgeons, anesthesiologist and everyone else to get organized, but we handed her off at 8:10am. That never gets easier; she was sleepy, and just wanted to snuggle with daddy. We are camped out in the cafeteria with our laptop and books. It's going to be a very long day.

The Plan

We just got home from camp; it was wonderful, and we'll share more later this week.  I wanted to give an update on the plan for Scarlett's surgery tomorrow, as I know many people will be looking for updates on her condition.

The vital info: Surgery is scheduled for 7:30 am PST at Children's Hospital Oakland.  The surgery is scheduled to take about 8 hours - however, it could be longer (or shorter, though most likely longer).  We will get updates from the operating room every 2 hours or so, and we will do our best to keep the blog updated from our camp in the cafeteria (Wi-Fi-willing).  We appreciate all the support we have received in the past, and know that you will all be waiting anxiously along with us, so we will try to make sure to share when we can.

For those who want to know how to help: our greatest need will be gas (the trip to the hospital is about 30 miles each way - we will be rotating parents at bedside, so someone will drive every day), parking fees ($7.50 per day) and food.  If you would like to help with any of these, we would be most grateful.  You can use the PayPal button in the right sidebar, or send to:

Scarlett Wecks

PO Box 1573

Newark, CA 94560

Scarlett is a very blessed little girl, and doesn't really need much in the way of toys or blankets right now.

WARNING:  I included some more graphic CT images and details in this post.  If you are sensitive to such things, you may want to stop here.

We met with the neurosurgeon and plastic surgeon last Thursday.  They both seemed a little concerned about the sheer magnitude of the problem.  They're ready and prepared for surgery, but not altogether pleased that they have to do it.  We began our discussion with these pictures:

Not exactly your typical baby portraits.

They described the problem they are facing when reconstructing her head.  The sutures, or seams, of her skull have prematurely fused.  This can happen naturally, called craniosynostosis.  In Scarlett's case, it was caused by a few unique factors.  Her brain is smaller than average, and combined with the low pressure of her current shunt, did not exert enough pressure on the bones to stimulate her skull to grow.  Since the bones were not pressed to grow outward to accommodate her brain, they just fused.  This is a problem for a variety of reasons, including cosmetic, but mainly because her brain IS growing.  So much, in fact, that it has nearly filled her skull, and has left very little room for fluid (thanks to the faulty shunt allowing too much drainage.)  The midline of her brain, which should be centered (and was until about November of last year) is now significantly shifted to the left.If we did not repair her skull now, her brain would quickly outgrow the space it has, and cause severe neurological effects.

The surgery will happen in stages.  We're hoping some of the additional procedures she needs (port removed and Botox injections in her neck) will be done before the major surgery begins, but scheduling is proving to be difficult.  Once they begin surgery, the neurosurgeon will change the valve in the shunt to one that can be adjusted.  Then, they will begin the tedious process of reconstructing her skull.  It will require detaching bones, repositioning them and creating a support system that will allow further growth.  It will include her entire skull, not just the obviously patchy left side.  There is a possibility they will need additional bone, which will be harvested from her ribs (no synthetic or outside materials will be used at this stage - her own bones will heal the best and cause the least complications over time.)  

As if that wasn't enough, the scary part comes at the end:  they will block her shunt and allow it to begin filling her head with fluid.  This will continue for a few days after surgery.  The build up of fluid will push the caved in bones out to a more rounded shape and fill in the space created by the surgeons.  Eventually her brain will adjust to additional fluid and hopefully bring the midline back to center.  The scary part is that in order to create the right volume and pressure, we will have to wait until we see signs of too much pressure - vomiting, eyes looking in different directions, discomfort from headache, and a possibility of seizures.  These symptoms will indicate that the open cavity in her skull has filled with fluid, and cant hen be properly shunted.  We were not pleased to hear this, but it is a case of making her worse to make her better.  It will be handled in the ICU (the idea of us watching for this at home had me panicked), and therefore caught soon enough to prevent any real damage. 

We are planning for at least a full week in the hospital; as we well know, things change, so it could be longer.  Once Scarlett is discharged, she should be able to return to her regular activities relatively quickly.  We want her to be back in therapy as soon as she is safely able; she will also receive PT and OT daily in the hospital as soon as she is able.  She will not need a special helmet or head-shaping device.  The plastic surgeon will ensure that all the incisions are hidden and as minimal as possible (he continually reassures us that he'll "keep her looking even cuter!") .

We are nervous, anxious and ready to get it over with.  We have been anticipating this surgery for over a year, since her skull first began to sink in (look back to posts in June-August 2011 for what it looked like then).  As much as we hate to subject her to more surgery, we know it is the best, and only, course of action.  We trust her doctors - honestly, if he can remove that nasty tumor as well as he did, I'm sure he'll do fine with just bones.

Scarlett's Brain Tumor Buddies

Since Scarlett was diagnosed, we have met many more children with similar stories.  Some have persevered and are years out of treatment.  Some are still in the fight.  Sadly, some were lost to this terrible disease.  In honor of Brain Tumor Awareness Month, I wanted to share some of the other stories we have been following.

Congenital Glioblastoma Multiforme (the same diagnosis as Scarlett)

- Connor (5 years old)

- George (5 years old)

- Abby (5 years old)

- Riley (3.5 years old)

- Faylynn (3.5 years)

- Lily (3 years old)

- Lilee-Jean (1.5 years old)
 Thanks to the internet, Facebook and blogs, we have been able to find 12 total children who have survived congenital GBM.

Other Tumors

- Phoebe (2 years old)

- Gaven (Almost 1 year old)

- Nicky (2.5 years old)

- Zac (almost 2 years old)

- Keegan (Forever 2)

- Bree (Forever 3)

- Jessie (Forever 12)

- Talon (Forever 1.5)

These are just the kids I have come across.  There are thousands more.  Their stories all begin the same - they were all just normal kids, and then they weren't.  Every single on of them has been through surgery and chemotherapy.  Some have had radiation.  Of those who have completed treatment, most have ongoing therapy needs.  Some have frequent seizures, and some are in wheelchairs.  

Four of these children have left us far too soon.  Keegan, Bree, Jessie and Talon all passed away within the last 6 months.  

This is not right.  Please help us bring awareness, support, and research funding to brain tumors.

Special Wish

Last week, Scarlett received another special gift.

She got her teeth on that box as soon as she could!

Scarlett is the proud owner of an iPad, thanks to Children's Wish Foundation International.  Most of the wish organizations, like Make-a-Wish, require children to be 2 and 1/2 or older, or able to describe their own wish.  This makes sense - the wish should be for the child, not the parents.  However, Children's Wish Foundation International has a special wish program for kids who are under 3 (or whose cognitive level is below 3) to provide stimulating toys, music, videos or games for them to enjoy.  Our hospital social worker wanted Scarlett to get the chance to take advantage of this opportunity, so she passed the application on to us.

There were a variety of options, including a collection of books and a rocking chair, a collection movies and a dvd player, a collection of music and a stereo, or a family party, but there was also an Apple iPad.  We had been looking into getting an iPad for Scarlett for a while, but it was way out of our budget.

Technology for kids with special needs has come a long way, especially since touch screens and apps were introduced.  There are speech and language programs, occupational therapy and fine motor programs and plenty more.  I have seen kids using iPads for visual assistance from a wheelchair, for overstimulation calming and plenty more.  Living in the Silicon Valley, we see these types of technology all around us.  Despite this, we have always been hesitant to "plug her in" to too much screen time.  I'd always prefer to see her banging together blocks or chewing on a slinky (as she is as I write this) that staring at a screen.  We use our phones to show her pictures or for minor emergency entertainment in waiting rooms, but never leave her to play on her onw (frankly, she'd prefer to chew the silicone case than watch anything.) However, Scarlett's teacher from the Center for Early Intervention on Deafness (CEID, where she attends class each week) was planning to bring one of the school's iPads to one of our home visits to see how Scarlett interacted with it.  Then the CWFI opportunity came up, and we all thought it could be beneficial as she got older. 

So, even though it seems pretty indulgent for her to have her "own" iPad, we wanted to take this opportunity while it was available.  We asked our social worker to send it is ASAP in hopes we would have it ready in time for Scarlett's upcoming surgery, and CWFI was happy to help.  

 

For the last few days, we have been working on setting it up for her use.  First, we bought a sturdy rubber case from Target (by Phillips) and added a plastic screen protector to prevent too much drool damage.  Then we investigated what apps to add.  The speech therapist at CEID helped me find some that they use on the school's iPads, and now we have a pretty good variety, mostly all free.

• Scarlett's most favorite is Baby Touch Peekaboo by Ladybird (free - iPad/iPhone/iPod Touch)
• The Monster at the End of This Book by Sesame Street- an interactive version on the popular book (this was a free offer from Starbucks a few months ago; otherwise, $3.99 - iPad/ iPhone/iPod)
• Toy Story Interactive Storybook by Disney Digital Books (free - iPad)
• Curious George at the Zoo (free - iPad)
• I Hear Ewe - full of animals and vehicle sounds (and can upgrade for more)
• Meet the Colors ($0.99 - iPad)
• Animal Fun (free - iPad/iPhone/iPod Touch)
• Eric Carle's My Very First App - color matching (a little advanced for Scarlett) (free - Ipad/iPhone/iPod Touch)
• Heydooda! The Kitty Says Hello - (free - iPad/iPhone/iPod Touch)
• GarageBand - she likes to hear the different instruments and "play" piano (free - iPad/iPhone/iPod Touch)
• Magic Laptop Farm Animals (free - iPad)
• ABC Magnetic Alphabet Lite (free - iPad)
• The Story Mouse - fairy tales (free - iPad/iPhone/iPod Touch)
• Injini Child Development Suite Lite - great simple puzzles (free - iPad)
• Dora the Explorer ABCs - (still very advanced for her, but we got free through Starbucks - iPad/iPhone/iPod Touch)

There are so many, many apps.  Some aimed at toddlers are completely developmentally inappropriate, but others can be engaging for their short attention spans.  Many are expensive, so we are holding off until she is a little more advanced (unless we really like it).  Scarlett's physical therapist also suggested checking out AutismApps for other special needs-focused apps organized by type. We'll keep the hunt going.

Finally, I wanted to get at least a few movies for her to watch while she was cooped up in the hospital.  She will likely be immobilized for at least a few days, so I thought it might be more interesting to see and/or hear a movie. I thought I could easily get our previously-owned DVDs converted and onto the iPad, but it took more work than I expected.  After a few hours of reading different forums and experimenting with the giant files for movies, I was able to get it done for free...somewhat illegally.  It involved blocking the copyright and converting to MP4, then hours and hours of upload time.  I'm not going to post how I did it here, but suffice it to say it can be done for free, and Finding Nemo is now available on her iPad.  ;-)

We are very grateful for this tool, thanks to Children's Wish Foundation International.  Scarlett still qualifies for other wish-granting organizations once she's a little older, and we're hoping she's able to ask for something that truly makes her happy.

Brain Tumor Awareness Month

May is Brain Tumor Awareness Month, and we are getting ourselves ready to spread the news.  We spread awareness about all brain tumors in May, but I am particularly concerned about pediatric cases, mainly because I had no idea that this could happen to a baby before it happened to us. 

Like last year, I plan to post an FAQ about Scarlett and our experience with congenital (and pediatric) brain cancer.  If you have a question, you can e-mail scarlettgrace2010[at]gmail[dot]com, or leave a comment here.

Incidence:

• More than 600,000 people in the US are living with brain tumors.
• Every year, nearly 12,500 children under 20 years old are diagnosed with some kind of cancer in the US.  About 4,200 of those kids have Central Nervous System (CNS - brain and spine) tumors.  11 more are diagnosed every day.
• Less than 2% of CNS tumors are in newborns - Scarlett was one of approximately 85 babies born with brain cancer in 2010.  The majority of those babies did not survive their first months.
• 3 children die every day due to a brain tumor.  Brain tumors remain the deadliest form of cancer in children.  Some tumors, like AT/RT and Glioblastoma Multiforme (GBM), have less than a 20% survival rate.  Diffuse Intrinsic Pontine Glioma (DIPG) has less than 10% survival rate.  Brain tumors are the leading cause of cancer-related death in children.
• Not all brain tumors are malignant, but even benign tumors can be deadly.
• There are more than 120 different kinds of brain tumors, some which occur almost exclusively in very young children, like medullablastoma, and others that are very rare like GBM.  Each kind of tumor has a different pattern of behavior, and requires different treatment.
• While survival rates of pediatric brain tumors have increased over the last 30 years, side effects from tumors and treatment, including subsequent cancers, is a lifelong battle and most will continue to require monitoring, treatment and therapies. 
• There are currently about 110 clinical trials being performed on children with brain tumors in the United States.  Only two new treatments for brain tumors have been approved in the last 25 years.
• Like most pediatric cancers, there is no known cause of brain tumors, and no way to prevent them.  They affect every race, ethnicity, geographic region and socioeconomic status. 
• Brain tumors are located in children’s control center of thought, emotion and movement, often resulting in long-term side effects. Survivors can have physical, learning and emotional challenges that will limit the quality of their lives into adulthood. 

I used to ask how having a ribbon magnet on your car or wearing a certain color for awareness was helpful.  How was my shirt color going to help someone?  But now I know: The only way to find cures for these children is RESEARCH.  Research requires FUNDING.  Funding comes from people who are AWARE of the problem.

AWARENESS >> FUNDING >>RESEARCH >> CURES!

We choose to support the Pediatric Brain Tumor Foundation at our annual blood drive (coming again in October to celebrate Scarlett's birthday) and whenever possible.  PBTF directly funds researchers who cannot otherwise secure funding due to the "rare" disease they choose to study.  Just recently, a research funded in part by PBTF funds published a major breakthrough in treating some of the most deadly of tumors - metastasized secondary tumors (those that have spread).  

 

Thanks to the Wall of Courage, Scarlett has her own line of Brain Tumor Awareness gear.  The Wall of courage was developed by a mom who lost her daughter to a brain tumor.  Now she promotes awareness and raises funds by creating badges that can be printed on gear from CafePress.  All proceeds from Wall of Courage gear goes to the Children's Brain Tumor Foundation.

Kids like Scarlett deserve a cure.  Wear gray, share her story and help us fight!

Surgery Schedule and The Port of Doom

This week has been so long, and yet I can't believe it's already over - I have so much that isn't done! 

First, Scarlett's big cranial reconstruction surgery is scheduled for just a week from now: May 8, 2012.  It will be done by the surgeon who removed the tumor at Children's Hospital Oakland, in conjunction with a very highly respected pediatric plastic surgeon.  That's just 9 days from now, and we are nervous and anxious, but glad to get it over with.  We don't know yet how many procedures it will take (probably 2 or more), how long we will be there (estimates are at 1-2 weeks, maybe more), or how they are going to go about fixing her skull.  We meet with the surgical team next week to discuss the details.

It was time for Scarlett's monthly blood tests, and it did not go smoothly at all.  Last month, we struggled, but got it on the third try.  This time, we weren't so lucky.

Tuesday, we went for a hearing test.  The doctor was running about 30 minutes late, but eventually we got Scarlett's hearing test done - no real changes, but we're not getting good data in behavioral tests (where Scarlett is observed for her responses to different tones and volumes), so she'll have a sedated brain response test next time to make sure her hearing is stable and her aids are adjusted properly.

Then we headed to the hospital down the street from there for labs.  We tried, but nothing drew back.  We'd done this before, so we knew step one was to put in medicine called TPA to break up any clots.  We were scheduled to come back the next day.

Wednesday, we went to occupational therapy, where Scarlett still refuses to drink anything.  Wet = no good for her.  She's sticking with dry crackers and dry fruit.  We've decided to stop trying baby food and just keep with whatever we're eating.  Maybe she'll find a flavor she likes more than animal cracker.

Then we headed back across the bay to the hospital.  We tried to draw back the TPA and get the blood...but nothing.  Just bubbles.  We weren't sure what to do, so we waited for further instructions.  Unfortunately, the decision was made to try TPA again, so we had to reaccess Scarlett's port (numb it with cream for 20 minutes, then insert the 3/4 inch needle).  Second dose of TPA in, then back home.

Thursday morning we met with the physiatrist who monitors her therapy needs.  She's sees Scarlett every six months to make sure her therapy goals are acceptable, attainable and that we have all the equipment necessary.  She works at the other hospital where Scarlett has had and will have neurosurgery, and knows the neurosurgeon well.  She suggested adding a procedure - injecting Botox into Scarlett's neck muscles - to her surgery schedule to help correct the constant head-tilt she has had since her tumor was weighing her head down.  Despite stretches, massage and growth, she has never been able to hold her head straight consistently.  We're hoping that the Botox will relax the muscles of her neck so she can re-learn her posture with her new skull.

Then we headed in for Day 3 of trying to get the port to work.  With fingers crossed, we accessed her port and tried to draw...but nada.  We waited for the message to make its way to the right people, who passed it to the next department: surgery.  Scarlett then had a chest x-ray to see what was going on.  Apparently, Scarlett has outgrown her port.  When it was placed, it was measured to fit her tiny 4-month-old chest (she was only about 12 pounds at that point!)  Now, her 18-month-old chest is much bigger, so the catheter is no longer is the correct position.  Lots of discussion, surgical consent-signing and more talk later, we decided that this port needs to be replaced.  We left that evening with plans to schedule surgery for early next week.

Friday morning, we drove to Berkeley (about 30 miles, but 60+ minutes with Bay Area traffic) to Scarlett's school.  After her class, we drove around so she could take a nap, since she had another appointment that day.  While she napped, I called the surgery scheduler to make plans for the port surgery.  She hadn't heard anything about it, had no orders, so couldn't schedule...plus, she said, there was absolutely no openings next week.  So, she said she would call our trusty neuro-oncology NP to see what we could do.  We returned to the school for a speech evaluation. Now that she has reached 18 months, she qualifies for speech therapy.  The evaluation went well - she has a few emerging words, is interested in noises, makes saliva bubbles and is generally just in good shape for therapy beginning soon after surgery.

Back on the freeway for the drive home, I knew to expect a call, so I had my bluetooth ready.  2 or 3 exits down the road, it beeped, and Trish, our NP, gave me the update.  Scheduling to replace the port will be a nightmare at either hospital, especially for something she doesn't really need.  I asked a million questions and we talked about it for about 30 minutes, but eventually came to the decision that her port will be removed for good and not replaced.  Ideally, we would keep it until at least 6 months post-chemo, but Scarlett, as usual, has her own schedule, so we're going to just go with it.  The hope is that this can happen during her big surgery to reduce the number or times she needs anesthesia, but if not, it will just wait until she's stable again.

SO, after hours of waiting in the clinic, 3 trips with $5 bridge toll, 4 port accesses, and a sit-down with a confused surgeon, nothing happened.  Can you believe that??  I'm glad she won't have to have a separate procedure, and that we an do our final week of therapy and regular life before her surgery as planned.  Throwing an extra surgery in to the mix was really throwing me for a loop.  Now, we're working on getting ourselves ready for hospital life once again - cleaning the house, packing, planning for Scarlett's entertainment (more on that later!).

Oh, and as if that wasn't enough, we're headed to a camping trip next weekend, returning the day before her surgery.  I think we've lost our minds...