Wednesday, February 29, 2012

Joy Jar

A few months ago, I began to see posts on Facebook and on the cancer boards I read about a girl named Jessica Joy Rees.  She was also fighting a brain tumor, and had an idea to bring joy to other kids who, like her, were in and out of hospitals for life-threatening illnesses.  She coined the term Never Ever Give Up (NEGU), and rallied tons of support for children with cancer.  Jessie was just 12 when, after 10 months, she lost the battle with her tumor and passed away in January 2012.

Part of the Team NEGU support is to provide Joy Jars to kids in treatment.  Joy Jars of big jars packed full with fun things for kids who need some cheering up.  I ordered one for Scarlett as part of her end of chemo celebration, and it arrived just in time this week!

The pink pouf came busting out of the jar when we opened it!

She had fun taking each item out and tasting it before moving on to the next thing.

She spent a few minutes flinging these Winnie the Pooh socks around before settling for chewing on the jar itself.

Team NEGU, along with Jessie's family, are working on some major fundraising to be able to provide Joy Jars for kids in hospitals all over the country and the world.  Last I saw, they have agreements with more than 60 hospitals (including both of Scarlett's)!  They are working to collect Facebook "likes" - they have been promised a big donation if they can reach 200,000 by Jessie's birthday in April.  Give them a hand by "liking" the page for Jessica Joy Rees, and share with your friends.  Jessie's beautiful spirit lives on through each child who smiles at their Joy Jar.  Never Ever Give Up! 

Friday, February 24, 2012

No Mo' Chemo!

Tonight, we gave the final dose of chemotherapy to Scarlett.  After nearly 13 months, it has finally come to an end.

I heard this song for the first time as I was driving home from the hospital one night after her big surgeries.  Every time I heard it after that, I thought about how it was a perfect theme song for this day that I thought would never come.(I had to change the link, so here's the official video.)

We got Scarlett a pink frosted cupcake to celebrate her accomplishment.  She took a minute to warm up to it...

Then she began to tear it apart, without letting any of it touch her mouth...

 And by the time she was finished, she had successfully dissected it without tasting a single speck!

After a bath, she went to bed, just like every other night.  We enjoyed some celebratory champagne as we completed the final medication diary.

Tomorrow, we are right back into our normal routine.  She will never remember all the nights of gloves and syringes, and the subsequent days of sickness.  I hope that this is the end of an era, that we never, ever have to come back to this again.

Thursday, February 23, 2012


We got a call this morning that Scarlett's MRI is CLEAR!  It will be reviewed by the full brain tumor board early next week, but the radiologist and doctors agreed it looked good.  Yea!

That makes it official: Scarlett has been TUMOR FREE for a FULL YEAR!  This is extra exciting because, according to her doctor, most recurrences happen within the first 6 months; the next milestone is one year, after which it is even less likely for the tumor to reappear.  One year out with NO sign of tumor means that we very well may have beaten this thing.  GO SCARLETT!

Tomorrow night, we will give the final dose of chemotherapy.  We plan to celebrate with some champagne for mommy and daddy and a big cupcake for little miss.  I can't wait!

Tuesday, February 21, 2012

MRI Tomorrow

I would have posted earlier if I had known, but they just called to reschedule...  Scarlett will have another MRI tomorrow morning at 7:30 am (PST).  This is just a routine scan to monitor her brain, but there is always that nagging little chance that something "bad" could come up.  Please keep her mind tomorrow morning!

New Page

My nap time project today was to add a page to the blog to share the gear and tutorials I have used.  At the top of the page, you can see the ADAPTIVE GEAR tab, where I have linked a bunch of things we have seen, used and liked over the last year to accommodate Scarlett's special equipment.  As I continue to learn more, I will add more.

So far, I have included hearing aid stuff (like the hot pink covers we use), g-tube stuff (like the tutorial for adding a nice hole to onesies, which I will write about soon!), the hospital gown tutorial I used for Valentine's Day, and more.  I have also included some of the every day gear we use, like Scarlett's car seat, which we chose specifically for her needs after MONTHS of research.

Hopefully, as we continue to chronicle our journey and learn more, we will end up with a very valuable resource for families like ours who have to learn about these things!

I am currently on the hunt for books about doctors, hospitals, and specifically about cancer, for young children.  As Scarlett continues to grow, doctors will be a constant part of her life, and I realized we have NO books about it in our extensive kid book collection (that's what happens when you have a teacher mom and librarian grandma!)   I'm hoping to find things that talk about childhood cancer patients, rather than children seeing adults go through treatment.  I'll add to the list if I find anything!

Friday, February 17, 2012

16 Months and Surgery #9

Scarlett Grace is 16 months old!  She weighs 21 pounds and is about 29 inches tall.  She has a ton of new teeth, but refuses to let anyone see or feel them; my best guess is that she has about 15 now.  She is still grinding them throughout the day.  She loves to stand up (with help) to bounce and jump.  She can hold herself up on hands and knees and rock back and forth, but is still pretty stationary.  Her favorite toys are paper, feeding syringes and her light-up bongo drums.  Her hair is long enough that it needs to be brushed after baths, and we put in a hair clip for the first time the other day.
Cousin Caleb is starting to be a little more fun!

She was not too impressed with the aquarium...

She likes to play with food - just as long as it doesn't have to be swallowed!  She has also commandeered an orange syringe to play with.

Her very last picture with an NG tube - hooray!
Miss Scarlett had her 9th surgery this week to place a gastronomy (g) tube.  This was an easy procedure that, so far, as gone just as planned (a rarity in Scarlett's world!).  The g tube, or Mic-Key button, is a very simple little valve (just like the closures on inflatable toys) that surgeons placed directly into her stomach through her abdomen that allows us to feed her and give medication without needing her to swallow. It is easy and pain-free to replace once the tract is established, much like an ear piercing, and can be hidden under her clothes.  It is held in place with a small water-inflated balloon, and we will be able to manage it all at home.  I am even going to take out the two stabilizing stitches myself this weekend to avoid an extra office visit (with surgeon's approval, instructions and supplies.)
In recovery, still woozy from anesthesia.
We were extra careful about this procedure, since the original gastrointestinal doctors were hesitant due to her past abdominal surgeries.  Her shunt has a long tube that runs from the back of her head, under the skin, down her neck and into her belly, where a long tube is coiled around, ready to stretch out as she grows, and drain CSF from her brain into her abdomen.  This made the placement of the g tube slightly more complicated, since they had to make sure not to interfere with the shunt (because that is the absolute LAST thing we need!).  So, while most kids get g tubes a bit differently, Scarlett's was placed by a surgeon laproscopically to avoid any interference.  The benefit, however, was that she got to go straight to the Mic-Key button, and will be free to bathe, swim and play in just a few days.

Her Valentine gown was a hit!  She wanted out of the crib as much as possible.
Having a much more active child in the hospital was an interesting experience.  Scarlett has not been hospitalized since she was about 9 months old.  Now, she is very aware of all the fun wires and tubes to grab, of the screens and beeps, and of the constant traffic through a shared hospital room.  She was NOT happy to have to lay in bed for most of the day, and was NOT happy to have her blood pressure taken every 4 hours.  This was a trial run before her reconstructive surgery in May, which will require much longer in the hospital and much more restraint.  We did see just how social she is; as we handed her off to the anesthesiologist and surgical nurse, she reached out to them, bounced in their arms and hardly noticed that we didn't walk down the long hall with her.

Sunday, February 12, 2012

Valentine's Project

Like I mentioned last week, I took on a little project for Scarlett's Valentine's Day.  Since she will be going in for her g-tube surgery that day, I thought it would be fun to have something festive to wear.  After a little internet searching, fabric shopping, cutting, sewing, re-cutting and re-sewing, I came up with this...

 It's an itty bitty Valentine hospital gown!  I got the pattern from Lazy Girl Designs, who offers an adult and a children's pattern free for personal or charitable use.  Since their pattern only came as small as a 2-4T, I did a little snipping and clipping to make it fit Scarlett, who is still in 12-18m.

 The details were very simple - just some velcro (I used the super soft kind, rather than the regular so it would be more flexible) at the top of the shoulders, two buttons and some ribbon ties.  I used flannel so that it would be as soft as possible, and I added the contrasting ruffle just to be fancy.  The pattern includes a buttonhole for heart monitors to pass through, but I chose to leave that out for now.

And, since I had plenty of fabric left over, I made a (much simpler) matching gown for her new doll...

...who will also soon be sporting her own g-tube, thanks to the tutorial I found here.  I will also add some felt hearing aids as soon as I get back to the fabric store to grab some pink felt.  She has never really been interested in dolls or soft toys much, but she LOVES the yarn hair on this doll (which came from JoAnn Fabric, too). It is important to me for Scarlett to have at least one or two dolls or toys that have the same "accessories" as she does.  As she gets a little older, I found someone who makes adorable custom dolls that can have any medical equipment your child has, including a shunt "bump", prostheses, braces, amputations, scars, hearing aids, cochlear implants and more.  

Since we'll only be in the hospital for 1-2 days this time (at least, that's the plan), we'll test this gown style and see if it works for her.  If so, I plan to make her a few fun ones for her big surgery in May.  It makes me feel a little better about spending time int he hospital if we can make it fun for her just a little. 

Saturday, February 4, 2012

A Fussy Week

Not much has happened lately, but I always feel bad if I don't write for more than a week!

Scarlett has had a less-than-stellar week.  She is really fussy, really agitated and irritable.  She is taking extra naps because she exhausts herself with tantrums.  She wants to be held a lot.  This is all completely reasonable for just a typical kid, never mind one who is on chemo and teething, but it is not really like her.  We never know which of the many reasons is causing her frustration.

Any time there is a change in her behavior like this, it puts me on high alert.  I check for fevers every few hours, I check her eye responsiveness and check on her while she sleeps.  I never hesitate to call the doctors if I feel something is wrong, but I have gotten pretty good at telling what is doctor-worthy.  So far, nothing they can do anything about...but I'm watching.

She has started doing the strangest thing - grinding her teeth.  It is the WORST sound ever, like nails on a chalkboard, and I cannot figure out how to stop it.  I have tried to distract her, blow on her face, say "No!", give her more to chew on, but nothing is working.  Her NP heard it the last two weeks, and she is concerned.  Her Friday teacher heard it, and said not to worry.  I looked it up, and apparently some babies just grind their new teeth (she has new molars coming in).  Has anyone else dealt with this? It is so ANNOYING, and I am worried about her brand new teeth!

We were also introduced to a new concern her doctors/teachers/therapists have: visual processing, or how her brain interprets what she sees.  We know her eyes and optic nerves are functioning properly, but we are not sure that her brain is really making sense of what she sees.  She's too young to test, really, but inquiries are already in process to see if we can figure out what is going on.  However, since three different people brought it up this week, I am guessing we will hear more about it soon.

All in a typical week around here!  I am still not dealing with things as well as I could be, so its been a little harder than normal.

BUT, a teaser: I am working on a special project (or maybe a few...) for Scarlett's Valentine's Day!