Tuesday, May 29, 2012

Feeding Revolution

First:  Scarlett's MRI was clear!  Her brain is looking very good now that her shunt is adjusted, and she checks out well.  We changed her g-tube Mic-Key button for the first time, and it looks good, too.  We don't go back to see neuro-oncology for TWO months, three if we are feeling comfortable enough to wait that long.  All good!

Now...We have made a major change in Miss Scarlett's world.  It's huge, revolutionary for us, and yet so simple it seems silly to even talk about it.  


Real food!  No, she hasn't started swallowing more than a few bites.  However, we are getting real food into thanks to her g-tube and a frighteningly powerful new appliance.

If you've been following us for a while, you know the trials and tribulations of Scarlett's diet.  Before she was born, we said she would never have formula.  When she was born, she could not latch properly, and overzealous, under-trained postpartum nurses pressured us into giving her formula within a few hours (she did fine as soon as I saw a lactation consultant and got the appropriate assistance).  We struggled to learn to breastfeed for the first 2 months, then were forced onto formula when she was first hospitalized for the tumor and stress won over my milk supply.  Then, around 5 months old, chemo had her so sick, she could not keep anything down, so she got an NG tube (nose to stomach).  We kept trying to get her to eat, but slowly, she lost her feeding skills and was relying on the tube for the majority of her nutrition.  A year later, she was given a surgically-placed g-tube, through which we have been giving formula.  She enjoys eating a narrow selection of crackers, dried fruits and other dry snacks, but is not yet able to swallow liquids, and avoids cold things like the plague.  We have seen occupational therapists, feeding therapists, gastroenterologists, nutritionists and no one really knew what to do.  We have been trying to incorporate more oral motor exercise, encouraging her to chew, bite and mouth things, but very little has changed in the last year.  Recently, we began looking into intensive inpatient feeding therapy programs that might help her.

We have been resigned to the idea of formula for the last year.  With the hospitalizations and chemo, we just didn't have the energy to do much else.  Formula did the job, and was an easy enough solution to her diet.  When she got the g-tube, cans of Pediasure were provided by her insurance; cases are delivered to our doorstep - you can't beat that convenience.  It is considered complete nutrition, and is labeled as "medical food".  She could survive on Pediasure for years.

But that's it:  just surviving.  It's not thriving.  Her most elemental needs are met, but she is not making much progress.  She has gained almost no weight, and has not gotten much taller in 6 months; she still fits clothes she wore on her birthday in October, and her feet are smaller than average (just barely in an infant size 4).  The primary ingredient of Pediasure, corn maltodextrin, is mainly used in making candy; that just feels wrong, especially after a year of chemotherapy.  There are enough doctors involved to tell me that she is fine, that she is still on the growth curve (around the 5-10th percentile - the same as when she was born, but lower than 9 months ago.)  They all agree that she should "stay on the lean side" while she is trying to learn to crawl and walk.  They're the professionals - we do what they recommend.

Unfortunately, Pediasure is missing a major dietary need: fiber.  There is a special formulation that has it, but not in the cases of cans stacked under her crib.  We began adding fiber supplements to her feedings, but it was not really doing the trick.  We added laxatives, which helped, but were not a good permanent solution.  She was uncomfortable, and we were frustrated.

After surgery earlier this month, Scarlett was sick.  No one was sure why, since there were so many factors (anesthesia, pain medication, inter-cranial pressure) to blame. She threw up many times a day, and we had trouble keeping any fluids in her.  We tried a few different formulas, added nausea medications, more laxatives, and kept adjusting.  She finally stopped a few days after we got home, but I was done.  I had had enough of the smell of formula, especially formula that had been vomited up.  It is the worst smell ever, and I was tired of it.  I was ready to do something new.

A few days ago, I decided to try something.  I took some baby food and thinned it out with formula, then put it through the tube.  Scarlett didn't seem to notice any difference.  The next day, I did it again and by that evening, her digestive system had regulated itself with no additional medications or laxatives.  I knew I was on to something.

I started to investigate g-tube diets, and found a wealth of resources.  Blended diets are common for people who cannot swallow, and there is a lot of support available online.  The first few blogs I found discussed their reasons for changing over from formula, often after years, and I heard much of my own reasons in theirs.  Learned some of the basics of blending for g-tubes, resources for nutrition information, and tips for clog-free feeding.

There is no real limit to the foods that can be fed through a tube - fruit, vegetables, grains, nuts, yogurt, meats, pasta, even dessert.  Every mom and dietician has their own recipe they use to give tube-fed people complete nutrition, but the one thing they all agreed on was the need for a high speed blender.  We had a regular blender, but it has nothing on the VitaMix.  This monster is used in commercial kitchens and restaurants like Jamba Juice and Starbucks.  The price was not budget-friendly, but we felt strongly that this is what we need to do for Scarlett, so we found a refurbished model (complete with a full warranty and cook book) and bit the bullet.  It arrived two days later, and I have been a blending fool ever since.

Thanks to very impacted practices, we can't get in to see her GI doctor for a few weeks, so I am doing my best to match the nutritional value of Pediasure with real foods.  We have been using Nutrition Data to calculate what we've been making, but I keep thinking that other parents don't do this.  If your child eats normally, you don't calculate every meal's calories, protein, carbohydrates, fat and water.  You do the best you can to give them a wide variety, encourage them to eat more vegetables and watch over time to see that they are growing appropriately.  This is the approach I am taking until doctors (or Scarlett's system) tell me otherwise.  So far, I have been very adventurous with foods: sweet potato, avocado, spinach, pumpkin, pears, apples, tomatoes, banana, peaches, whole milk yogurt, coconut milk, peanut butter, strawberries, blueberries, oatmeal, quinoa, mango, black beans - anything we have around the house or that looked good a the store, I have blended (and most of these things she has tasted before, so I am not too worried about food allergies, though I am watching for that).  Every batch it a little different, and we are freezing containers to have on hand for the week.  The VitaMix pulverizes anything I give it, and makes it so smooth that it doesn't require any straining - it goes through the tubing without a problem.

It's too soon to see much change, but I am optimistic.  Other parents report seeing healthier skin, hair and nails after a few weeks.  Many with kids like Scarlett, who are medically safe to eat but don't have the oral motor skills, say they see improvement in a few months, and wean from the tube after a while.  The sensation of real food being digested (tasting in burps, etc. - gross, yes, but important) goes a long way toward encouraging normal eating.  Her occupational therapist was thrilled to hear we were going to try this.

This is the first time I have felt energized about Scarlett's diet...ever.  I can't wait to see how her body responds to whole nutrients and variety we are giving her.  It's a lot more work, more expensive and more time intensive, but so worth it.  I feel like I am feeding her again, rather than just administering "medical food". 

Thursday, May 24, 2012

2 MRI Week

Tomorrow, Scarlett will have her second MRI for the week.  It took a lot of negotiating between the doctors at both hospitals, but they came to an agreement that they each needed different kinds of scans, so we would do them both - with the promise to the neurosurgeon that the other hospital won't mess with her new shunt!  Today was a "quick scan" to check her shunt (all good - no changes needed).  No anesthesia, only 5 minutes.  Tomorrow is the scheduled tumor-monitoring scan, which takes much longer and will require an IV and sedation.  As always, we will have our fingers crossed that this scan is as uneventful as all the rest.

I am working on a big change for Scarlett that is taking a lot of my energy and time, but I can't wait to share in a few days!  It's the beginning of a new era here, and things are looking good!

Tuesday, May 22, 2012

Camp Okizu

Scarlett's healing has continued last week.  We stayed home from all of her therapies to give her time to rest, and it has helped.  Over the weekend, she really perked up and is now feeling pretty good as we get back to our regular schedule.  She is almost back to her pre-surgery baseline, but still tires easily.  At her follow-up appointment last week, the neurosurgeon was pretty happy with himself - he keep commenting on how smooth her forehead is, and how symmetrical her face is - good!

Later this week, she will have another follow-up to check the new shunt's progress (her brain had almost come back to its proper position after just 8 days). Then on Friday, she will have her next quarterly MRI to check for any tumor progression.  This means two MRIs this week - two different types at two different hospitals.  I wish I could say that they are no big deal, but I still get nervous for these tumor checks. 

I need to back up a bit and share our camp experience a few weeks ago.  We had such a fantastic time!  Unfortunately, we had such a good time that we barely remembered to use the camera, so we don't have much to show!

Our cabin, with the large deck where summer campers sleep outside.
One of a few lakes, with a craft building, canoes, and a swimming dock.
The awesome zipline - mommy and daddy both took a turn, but Scarlett did not appreciate the harness - maybe next year!
Scarlett and daddy singing at the campfire
Camp Okizu was started 30 years ago to provide a getaway for families with children who have fought cancer.  The camp is in northern California, in the mountains above Lake Oroville (about 3.5 hours from us).  It is open to families from all the major pediatric oncology centers in northern California - Lucile Packard at Stanford, Children's Oakland, Kaiser Oakland and Roseville, UC Davis, UCSF, John Muir and a few others.  Each summer, hundreds of kids who have fought for their lives get to escape their reality and enjoy some time in the woods swimming, fishing, canoeing, climbing ropes courses, swinging on zip lines, playing games, singing at camp fires, sleeping under the stars and enjoying the freedom of being accepted in a group of kids who understand what they have been through.

But patients are not the only focus.  Okizu offers a very unique experience: SIBS camp, or "Special and Important Brothers and Sisters".  The idea of having a healthy child in addition to a patient is overwhelming, but it is a reality for many families, who must find ways to balance the attention and resources for all their children;  Okizu gives those super sibs a chance to get away with other kids who know what it's like to be surrounded by sick.

Finally, we attended one of the many weekend family camps, this one specifically intended for families of brain tumor patients.  It was the first time we have ever sat in a room with a group of parents who know what we have been through.  They knew our fears about MRIs, the lingo of brain trauma and, probably best of all, they could laugh with us about things that are funny for us, but that other people just don't understand.  There were 7 brain tumor families in all; Scarlett was the youngest by many years, and was the only girl, but we still had a lot in common with the other parents.  We listened to their stories, commiserated on some of the all-too-common struggles and shared the roller coaster than is parenting Scarlett.

We were very lucky to meet some amazing people that we hope to see every year.  Some have been attending for more than 10 years, since their now-teenagers were little.  One family has been seeing the same neurosurgeon as Scarlett for nearly 10 years, so we immediately had a lot in common.  Everyone had an amazing story, and an amazing kid to show for it. 

The parent discussion groups were open to whatever the group wanted to discuss, but the second day, focused a bit more on the effect that such heath crises have on siblings.  It made me so grateful that Scarlett is our only child, and that we have been able to focus on her needs exclusively; I can only imagine how difficult it would have been to manage another child's needs over the last year.  Since we were the only family there with just one child, we didn't have much to add to the conversation, but we did get a chance to share our concerns about future children, and the trouble we have considering another child amidst Scarlett's needs.

Thanks to corporate sponsors and lots of fundraising, Camp Okizu is free to all campers, including meals, the beautiful camp facility and all activities.  We felt so lucky to be able to go, and were so glad that we were able to convince the surgeons to wait a few days so that we could get some fresh air before all those days in the ICU.  We can't wait to go next year, and for Scarlett to get the chance to go to camp (once she's a little older!). If you would like to read more about Camp Okizu's mission, you can visit their website at www.okizu.org.

Wednesday, May 16, 2012

19 Months - At Home!

We have been home since Monday afternoon.  It has been challenging, as Scarlett is not feeling her best.  She is irritable, clingy and nauseated - a nasty combination for anyone.  It was clear that she no longer needed the PICU-level observation, but there were no beds available on the recovery floor, so, since we have dealt with a lot of similar things at home already, we all agreed we would be better off at home.  One of the neurosurgeons explained that it is going to take a while (no one knows how long) for Scarlett to be back to normal; her brain is doing a lot of shifting and adjusting, so we just have to wait it out.  This morning, she woke up perkier after a full night's sleep, and has given us a few smiles and giggles, so maybe we are on the upswing.  She goes in for a follow up tomorrow, and will hopefully get the all-clear for therapy, play dates and school!

In other news, today Scarlett is 19 months old!  There's not much new to share - her weight, height, teeth and skills are all about the same (or a little less than before surgery).  This month has been very focused on this surgery, so not much else has happened.  However, now that it is over, we can look forward. 

Saturday, May 12, 2012

Fine Tuning

Scarlett has had a rough couple of days.  She opened her eyes on Thursday evening, putting on quite a show for her grandpa and me.  She waved, clapped and laughed as she finally was able to see after three days of swollen-shut eyelids.  We were so happy to see her coming back to herself.

Friday, she woke up in a bit of a funk that she has yet to shake off.  She is not really fussy, but not at all happy.  She whimpers at most touches, and isn't happy to be held.  Then, today the vomiting came back; her bed has been changed at least three times, and is pretty fed up with wet wipe baths.  This could be a symptom of a huge range of things; so much has changed for her in such a short time that it is hard to determine what is causing her discomfort.

We were moved to the quieter, smaller room of the PICU on Thursday evening.  Friday and Saturday, we waited through the day for a bed to become available on the recovery floor.  By Saturday evening, her symptoms were becoming varied enough that the neurosurgery team decided to keep her in the PICU for closer observation.

Despite the discomfort, the doctors are very happy with her recovery so far.  Her skull is remarkably round; it will take many months, close to a year for her actual skull shape to emerge as swelling and shifting will continue to change her appearance.  As the bones begin to heal, the screws and brackets holding her skull bones together will dissolve, allowing her skull to grow naturally.  Once the bones begin to fuse, her skull will be just as strong as everyone else's.  For now, she has an incision across her head like a headband from ear to ear, plus a small curved incision on the back where the shunt was placed. 

Her shunt setting is still being fine-tuned as her brain adjusts to the increased amount of fluid.  The new shunt is adjustable (or programmable), which means the flow can be changed depending on the need using a specially-designed magnet against the valve on the back of her head.  Right now, we need her shunt to hold on to CSF to fill her new skull and "reinflate" the too-small ventricles (fluid spaces) in her brain.  As the pressure increases, the shunt can be dialed down to allow more drainage until we hit just the right setting.  Because her brain has been through so much so quickly over the last few days, the unhappiness is not unexpected, but needs to be monitored with regular "quick scan" MRIs that check the fluid collections.  She has had two scans since surgery, and it sounds like we will have another tomorrow.  Once the doctors feel she has balanced out, we will go home and get back to our regular routine.

One hour after surgery
Day 2 - purple eyelids, no eyelashes, puffy face
Day 3 - Open eyes, tiny smile!  Bandages off with a round head.
Day 4 - sitting up, playing.  Mommy made her some fancy gowns for this stay.  :-)
Day 5 - Sitting independently, looking much more familiar.  Another mommy-made gown!
Just too cute!  She loves to watch Finding Nemo on her new iPad - so much that she won't take her hand off, even when she sleeps!

 Every day brings a lot of progress.  Pretty soon, she'll be back to her old tricks again!

Thursday, May 10, 2012

Return of the Feisty Girl

Being back in the Children's Oakland PICU has brought back many memories for Chris and me.  It is the place we watched our baby fight for her life for nearly three weeks, where we watched her have seizures, and where we started to regain some hope that she might survive.  At just two months old, sShe was just beginning to acknowledge the outside world with little smiles or gentle touches.  After surgery, we didn't know what to expect, when we would see "her" come back.  It took a few days, but eventually, her leg, the only extremity not tied down by IVs, started to reach out toward our touch.  It was a sign to us hat she was coming back to us.  As the weeks passed, she regained more and more of her feisty attitude came through, reassuring us that she was doing well despite the trauma.

Last night, the feisty girl made her way through yet again.  Her eyes are swollen shut, black and blue, and her face is completely round.  Her fingers, hands, arms and legs are swollen.  She had three IVs in both hands and a leg.  But she made sure we knew she was there.  Around dinner time, she started to kick her blankets off.  She grabbed the nurses' stethoscopes as they tried to listen to her breath.  While Chris was with her in the ICU last night, she somehow managed to "break" all three IVs.  They tried repeatedly to get a new IV in, but no one could - not the PICU nurses, not the NICU nurse, not the neurosurgeon, who finally decided to go IV-free and just give all her medications by g-tube.

Once I got in this morning, she tried to wiggle her way toward my voice, completely dislodging all the pillows and tubes around her.  She has pulled her bandage "hat" off a few times, and snarls a little kitten roar every time anyone moves her pacifier.  The feisty girl is on her way back!

The incredible swelling has begun to fade, and she is starting to look a little more familiar.  With her hands free, she has been rubbing her eyes all morning, trying to figure out why she can't see - frustrating for her, but I think all the stimulation has really helped the swelling go down. She is tolerating all the necessary medications in her stomach, along with her regular formula.  As soon as the doctors feel her swelling is down enough, she will be moved out of the PICU and to the recovery floor.

Wednesday, May 9, 2012


We had a long, tiring night in the PICU. Action never ceases, no matter who is trying to sleep. Beeping, whirring, talking and crying cycled through the floor, but luckily Scarlett slept through most of it thanks to some heavy narcotics. Many of the nurses remember her from our month-long stay when her tumor was removed, so they keep coming by to check in. She's facing a few challenges right now. First, swelling has taken over her face. Hr eyelids are purple and have grown to cover her lashes; she hasn't been able to open her eyes all day. Sometimes we can tell she is awake, so we talk to her and try to give her our fingers to grab. Every once in a while a little tear slips out - heart-breaking! She is also having tummy troubles. She looked like was doing so well that they began giving her some Pedialyte through her g-tube. This resulted in a lot of vomit. She hasn't been able to keep anything down yet, so we have increased her anti-nausea meds. Since vomiting can be a sign that her inter-cranial pressure is high, she will be getting a quick MRI scan this afternoon to monitor the fluid build-up in her brain. Until then, we have her g-tube venting anything nasty so it doesn't have to go through her mouth (a strangely convenient aspect of the tube - it's as much a outlet and an inlet for the stomach...) Overall, everyone is very happy with how she is doing. It's hard to see her to swollen and zonked out on medicine, but we know that this is just a short phase to live through. She has already had an OT evaluation and will also see PT and maybe speech while she is here. For the next few days, we will be watching carefully and making sure that she is as comfortable as possible.

Tuesday, May 8, 2012


The surgeon just came out to tell us that they are finishing up. Everything went well, blood loss was controlled, and she will be in recovery in about an hour. Thank you for all the positive energy and support today.

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.

Monday, May 7, 2012

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.

Thursday, May 3, 2012

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.

Wednesday, May 2, 2012

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.

Tuesday, May 1, 2012

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.

  • 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.

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!