Saturday, August 24, 2013

Chapter Closed

Yesterday, Scarlett had her very last chemo!

We did not plan much because we had short notice that her counts were okay, and she usually feels pretty icky, but the nurses had a different plan:  cake! 
Apparently it was put in front of her before any cameras were ready.  This was the first shot.

She ate the ENTIRE thing.  Without slowing down.  And loved every bite!  I had to be at work in the morning, and I missed the whole celebration by about 5 minutes.  As crushed as I was, it was great to walk into a room filled with giggles and frosting.  Scarlett had a great day, other than the chemo being pumped into her chest.  Those nurses have taken care of her for almost 3 years now, watching her grow and thrive despite the treatments she has had to endure.  I think they were just as excited as we were.


 So, we begin yet another new chapter of Scarlett's life.  From here on out, she gets labs once per week for the next month, and then every three months as she gets MRIs.  We're far from finished...we've been here before.  It was almost exactly one year ago that the "mystery spot" showed up in her MRIs; she had been off chemo for about 6 months.  Waiting for the next three months, the next year, the next five years will be filled with anxiety.  Five years of clear scans is considered safe, so we have a long way to go.

It also the 6 month count down to her next surgery.  In six months, she should have a stronger immune system and somewhat repaired healing, and that means it's time to work on rebuilding her skull.  Once that goes smoothly (knock on wood), she can have her port catheter removed.

We're also still on watch.  If she gets a fever, she needs to be monitored closely and could end up in the hospital.  A fever could be a sign of an infection in her port, which would have to be treated intensively.  We are also always on the lookout for shunt issues - fingers crossed, there's no problem there.

All that is just part of our daily life.  There is no holding her back.  She is climbing on to and out of everything - out of her high chair, out of the grocery cart, on to the couch, on to every surface she can reach to get one level higher.  She is unstoppable.  She says two words simultaneously with signs - "bath" and "walk".  She will begin her second year of preschool on Monday, in the same class she was in last year.  She is not able to tell us, but I know she misses them.  We have a picture of her teacher, aides and friends next to her dresser, and she points and smiles at them every day.  It will be great for her.

We tried on glasses last week - this was our choice, and they should arrive any day now.
She lucked out when someone outside the hospital handed her a bunch of prohibited latex balloons.
Driving with her buddy Alanna - I clicked the picture right as they crashed!
 I am so proud of this girl.  She is just an amazing joy, and we are lucky to be her parents, and to have the opportunity to fight for her.

Please don't forget our friends LJ, Phoebe and Abby.  All three are entering hospice care.  All 3 beautiful little girls - they are all between 3 and 5 years old - deserve better than this disease has given them.  We also got a message from a family whose baby was diagnosed with the same very rare tumor as Scarlett - baby Maggie in Ireland has a long road ahead.  And finally, a friend who has been integral to helping our life to keep rolling since just before Scarlett was born, has also entered a frightening cancer diagnosis.  

It is just plain unfair, and I hate it.

September is Childhood Cancer Awareness Month.  I will post more soon, but PLEASE do something to share the news.  Paint your nails GOLD.  Wear something GOLD.  Tell a friend.  Donate to a worthy organization that is funding life-saving research.  Share Scarlett's story with someone, and tell them to share it too.  The more people we tell, the less "rare" this becomes.

Here's what I saw last weekend: 

Pink yarn for Breast Cancer Awareness month in October.  Good for them.  But I have never, ever seen a display of anything for childhood cancer.  Or brain cancer, for that matter, but that's another month.  This needs to change.

Friday, August 9, 2013

Round 8 - Finally!

Today Scarlett got the first dose in the final round of chemo!  Just a few weeks away from chemo freedom!
Front row seat at the clinic TV.
Necklaces and pigtails are the chemo uniform.
 It has been almost a month since her last dose, when it should have been 2 weeks.  Her counts bottomed out, and we had to wait for her body to decide it could handle another round.  Her labs were drawn several times over the last week, always showing very low numbers.  After 4 draws with low counts, her doctor decided to just wait a full week, give her (and us) a break, and wait to start on our "regular" chemo Friday.

Today, her counts we back into an acceptable range, so it was time to hit her again.  We had mixed feelings - glad to get a start on this last round, but not looking forward to making her sick.

After entertaining all the nurses and doctors in the clinic, she got hooked up.  Just a few minutes in, she was already sick, and the evening went downhill from there.  What a bummer.  Just have to keep remembering:  this is it.  Never again. 
Waiting at the ophthalmologist.
Today was our second day of doctors and hospitals.  Yesterday, Scarlett had two appointments.  The first was at Stanford with her ophthalmologist.  We've seen the same doctor every 10 weeks or so for two years, and have never left with much.  Yesterday, we left with a prescription for glasses.  It seems that it has been known for a while (by everyone but mom and dad!) that Scarlett would inevitably need glasses, and now it's time to act.  She has had some trouble with her eyes for a few months; her left eye occasionally turns inward and seems to get "stuck".  Chris showed her the video he caught of an episode:

  When the neuro doctors saw this, they said seizures without hesitation.  We first thought seizures, and started anti-convulant medications, but after a few weeks, we noticed that she could easily be "pulled out" of an episode with a little pinch on the leg or a loud sound.  If she can control it, it is not a seizure.  We then backed off the meds, and moved up the appointment with the eye doctor. Now that we have ruled that out, the ophthalmologist says she needs glasses with no we'll see.  I joked that if we had shown it to the GI doctor, they would have thought it was acid reflux or something; every specialist sees their own worries.  Nevertheless, she will be getting fitted for glasses, and we will be trying to figure out how to keep glasses, hearing aids, ankle braces, and a walker all coordinated.

The second visit of yesterday was to her neurosurgeon in Oakland.  Unfortunately, it was a long drive in traffic, so she was pretty crabby (ok, no lie - we were all pretty crabby after the glasses revelation on top of the long drive).  We typically would have spaced the appointments, but both are hard to schedule, and with school starting in a few short weeks, we were running out of time.  Of course, we forgot to get a disc of her recent MRI for the surgeon to see, so he really just felt her head, asked how she was doing...and how quickly he will be able to get her in for surgery again.  Yup.

Checking out the view from the neurosurgery clinic - a lovely panorama of San Francisco and the Golden Gate Bridge off in the distance.  It's the bonus for having the doctor on the top floor!
Like before, she needs a solid 4-6 months off chemo before a major surgery.  So, in 6 months, we will go back to the surgeon, and it will be time to schedule her next cranioplasty to continue attempting to repair her skull where previous surgeries have damaged it.  The last surgery was 14 months ago, and it is pretty obvious that the surgeon's attempt to give her skull a chance to repair itself with what was there has failed, so it will be time to look at some kind of implanted skull device.  And, since she will only be three, and her skull will have years of growth ahead of it, it will not be the last surgery.

So, two bummer days.  We're skipping swimming lessons tomorrow, too, since she feels so yucky today.  The best news we've gotten is that she continues to grow: over 25 pounds again, and 34 inches tall!
Mommy and daddy's getaway to the SF Giant's game at AT&T Park - bad day for the Giant's but a fun day for us!

Sunday, August 4, 2013

Blending 411

**I am sharing this post on a blended feeding group for other blending parents to see.  If you're not as fascinated by blenders as we are, this might be excessive information for you.  

**If you're new to our blog, you can check the Scarlett's Story tab to learn more about Scarlett.

If you've been with us a while, you know that Scarlett has had trouble eating for a long time.  For the first two months, she struggled to nurse, but was starting to get it.  When the tumor was discovered and she was hospitalized, an NG tube was a necessity - when she was even able to be fed between surgeries.  I tried to nurse as long as I could, but only lasted 3 months with a pump and the stress of living in the hospital.  After that, she was on formula (Enfamil) by NG, but the chemo made her vomit multiple times a day.  She could finally get a g-tube at about 16 months as things calmed down.  A few months later, we made the choice to switch from formula (Pediasure at that point) to 100% blended food.

Feeding someone who cannot eat is challenging.  It is frustrating to watch your child spit out food, drool out liquid and make a total mess with every bite.  It is frustrating to be told by everyone around us that if we just gave her ____ (fill in the blank with every food imaginable), just used the magical ____ spoon/cup ("it worked for my kid - who has none of the same issues as yours."), if we were meaner, more insistent, cleaned her up better ("she thinks it's okay to make a mess."), or if we just tried harder, she would eat just fine.  The fact is, after nearly 3 years of feeding this child, I have just come to understand that it will look different than others, and that's okay.  One way I make it feel more normal for me is to blend her food myself; it makes me feel a little better about what she is getting, more like what I would have done if she was a "typical" kid.

Blending is not the right choice for every tube-fed person.  It's good for Scarlett because:
  • she has no known food allergies.
  • she tolerates the food better than formula - less vomiting, better weight gain.
  • she sees specialists regularly who agree she is getting what she needs from the food we make for her.
I don't want to demonize those who give their kids formula - trust me, whipping out powdered formula in some crowds is the height of taboo.  When Scarlett was born, I was convinced she would never taste formula - I would nurse until she was ready for real food, no ifs, ands or buts.  I watched videos, read books, and thought I knew it all.  Like so many of my ideas of parenthood, it went right out the window when I had to face the reality of parenting this particular kid.  Formula did everything she needed it to do, and it is the right choice for many people.  However, no artificial formula is ideal for the growing body; with everything else Scarlett has to battle, we thought that "real" food was the best fuel for her. 

We've been blending now for more than a year with great success, so I wanted to share the process and a few details to help others who might be considering it.  I know for a fact that I am not the most organized or creative when it comes to this, so there are others who might do it better; however, this plan works for us.  Every kid is different, so some of what we do may be impossible for others.

Scarlett is almost 3.  She weighs about 25 pounds.  She is moderately active during the day - crawling, walking with the aid of a walker, climbing and cruising furniture.  She eats some orally - pudding, cookies, cheerios, some string cheese - never enough for a full meal, and never a "balanced" meal.  She swallows no liquids.  She gets Zofran as needed with chemo, but no other medications.  She gets four 8-oz. meals per day, plus whatever she wants to eat orally.

I blend once a week or so, usually on the weekend when I have the time. It takes me about an hour to blend enough for her week.  We freeze everything and defrost as needed.  Since our weeks are incredibly busy, it is a huge help to have a meal for her ready to go in a few minutes.  We use Ball Freezer Jars in the 8 oz size.  An 8 oz jar is one meal for Scarlett.  These jars are plastic, so we are less concerned about them breaking.  The lids are plastic and seal well for travel.  They are meant to be frozen, and have a "fill to here" line, which helps me from having exploded jars in the freezer.  We bought a large supply of them last year and are just starting to see cracks in a few, so I feel like they have a good lifespan.  They are also available at the grocery store (near the baking supplies, with canning jars), so I can grab a pack if I need them.

We bit the bullet early on and bought a refurbished Vitamix blender.  It is perfect, and I have no complaints.  The company has great service - a refurbished product came with a great warranty, which we have already used (I chipped the blade somehow, and they replaced the whole canister for free.)  Plus, when it's not making Scarlett's meals, it makes a mean margarita!

I do NOT use a specific calorie goal - none of the other parents I know (without tubie kids) count calories, so I refuse to.  When we first went "rogue" from formula, we based her goals on being equal to the Pediasure we were giving her.  However, once we got the feel for it, we just eyeball it. 
Raw materials - this time I used beets (pre-peeled and cooked, from the produce section), apples, apricots, pears and other goodies.

Another pre-blended layout - this time I roasted squash, sweet potato and raw beets with a little salt and olive oil before blending.
Our doctors - pediatrician, GI, nutrition, neuro-oncology, neurosurgery, and everyone else - agree she is growing well, so we are sticking with that.  We're just rebels that way, I guess; if anyone was concerned about it, I would be more careful.

With that said, I am pretty routine in my blends.  Some people just make one blend for all meals, but I have this strange habit of making different colors to help differentiate her meals - i.e. a red, then a green, then an orange helps me to know she is getting a good variety.  I get a little thrill from all the colored jars in the freezer - finding the little joys.  We don't worry about separating breakfast, lunch or dinner meals - we just grab whatever is there, trying to mix up the colors within a day.
Blend rainbow!

An approximate sample week of ingredients (what I just blended today, that inspired me to write this!): 
 1 C quinoa
 1 C steel cut oats
 whole grain bread
 1 bunch lucinato kale
 1 bag frozen, cubed butternut squash
 1 can sweet potato (I usually dice and cook my own, but didn't feel like it today!)
 1 pear
 1.5 C frozen blueberries
 1 peach
 3 bananas
 2 C whole milk yogurt
 1 zucchini
 1 C applesauce
 flax meal
 blackstrap molasses
 sunflower seed butter 
 Whole milk - probably close to half a gallon
 coconut oil (not blended - we add at mealtimes)

We don't use meat for Scarlett's blends.  If she wants to eat some, that's okay, but we don't much at home (Chris is vegetarian), so she doesn't get any either.  Most everything is organic, but only as it makes cost-wise sense.  If there's a good deal on conventional berries, I choose them.  However, I always choose organic dairy products.

I cook the quinoa and oats together with the flax and a little salt.  This is the grain base for most of my blends; I might use them separately or substitute some whole grain sliced bread.  I've thrown Cheerios or cereal bars into the blender, too - anything she would have eaten can be blended!

Other food warnings: blackberries clog the tube no matter how I blend them.  I blanch kale before blending, though I don't think it really makes a difference.  The seeds in some breads can clog - I often have to strain these blends with a fine mesh strainer.

I mix things for color and flavor - she might taste a few bites, or at least the essence of the meal in a burp (though I can't ever make the puke taste better!).  I try to mix fruits, vegetables and other ingredients, but I'm not really careful about this, since she will get a mix throughout the day.  Not every meal is perfect!

An ideal blend texture for me is like a smooth...pureed soup?  Slightly melted milkshake?  It pours easily from the blender (though some might stick to the sides), has no chunks, seeds, or solid pieces; thinner is better, especially when freezing because it will thicken in the freezer.  I add milk until it is the consistency I want.  If there is any chunkiness, I reblend it - I always prefer to take the time to correct it at this stage rather than trying to feed a blend that will clog the tube!  I try to avoid straining so that I keep all the good fiber and as much texture as I can.

We feed warmed blends.  I am sure others go about it differently, but I just microwave jars on low power.  I usually stir in some additional oil - coconut (which is solid until warmed) or olive, and that helps to thin a blend after the freezer thickens it, and adds some valuable calories.

Scarlett sits in a high chair, and we attach the extension tube under the tray so she can't pull at it.  She typically eats some food orally before we start pushing anything into the tube; if she has a particularly good eating session, we give less via tube.  We give 30-60 ml of water before a meal.  We use 60 ml syringes to give boluses - 4 syringes full from the 8-oz. jar.  Some people use a pump, but we prefer the syringe method.  It takes about 15-20 minutes to give a whole meal, pausing every 20-30 ml to give her a chance to catch up.  We end each meal with another 30-60 ml of water.

I can tell when she is getting full, and we sometimes stop before we have given the whole jarful.  We've been puked on too many times; I'd rather get only 6 oz. in than have the full 8 oz. back in my lap.

We have done several weekend trips, and one week-long trip since Scarlett was born.  Plus, each week day she eats once at school.  To make all of this easier, we use the baby food pouches when we travel.  I like the Plum Baby Stage 2 with grains.  The pouches are easy because the syringe fits directly into the spout and sucks the food out with zero mess.  The pouches are about 3 oz. volume, so we use 2 followed by some milk (the boxed Horizon or Silk Soy are great for this).  It's not a long-term solution, but for a few days, it gets her through with no problem.  It's much more expensive, so we try to avoid it whenever we can.  The Ball jars are very securely sealed, so we often throw a few into a cooler if we know we will be able to warm them later. 

I've never taken the blender anywhere - it just hasn't been a necessity for us.

I think that's the basics.  Scarlett has made amazing progress since we transitioned to blended food.  There are many factors to her success, but I think that real, healthy food is a major player.  She "eats" better than any toddler I know.  I feel better about letting her eat what she wants (or what she is willing and able to try) knowing that she is getting what I want her to have by tube.

Of course, one day I hope she will be tube-free.  It would be great if we didn't have to elicit stares or strange looks when we feed her outside the house.  I'd love to not need to wipe the food off the ceiling after I accidentally slip the syringe too fast, or have her tube leak on my shoes. 

If you made it through this and don't have a tubie yourself, congratulations!  You're ready for a great smoothie.

If you have questions about how we manage blending, you can ask questions here, or e-mail me at ScarlettGrace2010<at>gmail<dot>com.