Trouble is Brewing...

I feel the storm clouds forming above my head...

Yesterday, we took Scarlett for her now-monthly clinic visit.  When they tried to draw her labs (blood) from her port (the catheter under the skin of her chest), nothing came out.  Generally, ports should be okay for 4-6 weeks between draws, but apparently, Scarlett is on the shorter end of that spectrum, as it was just 4 weeks since the last draw.  They flushed it with saline, then with Heparin (anti-clotting medication), and still nothing.  The nurse got orders for TPA (a stronger clot-dissolving solution), and after letting it sit for a few hours, still no draw.  We deaccessed her port, re-numbed it, reaccessed it, and still no draw.  Finally, they sent us home with another dose of TPA in to work overnight, with hopes that we could draw the blood this morning.

Well, this morning, we tried again, and nada.  Fluids can go in, but nothing draws back out.  This likely means there is some kind of small clot in the catheter somewhere.  I talked with Scarlett's NP, and her suggestions was to come back Monday morning (can't today since it's Friday) for another try with 24-hour TPA.  We'll go in Tuesday to try yet another draw, but if that doesn't work, we're in surgery-land once again.  If the port isn't drawing, we will need a new one put in.

Theoretically, she doesn't need the port anymore since she isn't getting chemo, and her blood draws are infrequent.  However, she has a very bad history with peripheral (arm or leg) IVs, and they are much more painful.  With her surgery coming up, we would like to have a port for all the anesthesia, fluids and possible transfusions she will need.  She wasn't scheduled to have her port removed until we were a few months out from that surgery, and sure she would not need it.

Oh well.  There's still hope that it will magically flush Tuesday and we can avoid surgery.  I find it unlikely, though...Wednesday is my birthday, so I'm almost positive we'll be signed up for surgery that day!  It's just my luck!

Pediatrician

This morning, Scarlett had an appointment with her new pediatrician.  She hasn't had a true pediatrician all this time, but her neuro-oncology NP had someone specific in mind to manage all of Scarlett's "normal" kid stuff aside from all her other doctors.  Since her diagnosis, everything has been handled via oncology, since even the slightest fever, rash or sniffle could have indicated a major problem.  Now, we're moving away from high alert status, and can see a local pediatrician.  Even though she seems to have a specialist for every area of her body, we have to have someone who is in charge of the basics like vaccinations, colds, ear infections or whatever else pops up as she continues to grow.

Of course, the "approved" pediatrician was not easy to come by.  Her practice was closed to new patients, so it took some calls from me and oncology to get us in.  Then, trying to find a time in our schedule that was also free on her schedule was tough - after 5 minutes of back-and-forth with the scheduler, we settled on 7:30 am.  Not our best hour, but we made it right on time.

When we arrived, we had to fill out the developmental forms for Scarlett's age.  It seemed to go on forever;  "Does your child climb stairs?" No.  "Does your child use at least 4 words other than mama and dada?" No.  I checked "no" on nearly every milestone...then came to the end, where the last two questions had us laughing.  "Has your child had any other health issues recently?" Um, yes.  "Do you have any concerns about your child?"  The box was not big enough for that answer!

The appointment went really well, and it's great to have another caring, concerned, attentive doctor on Team Scarlett.  She shared some of my concerns about weight gain and nutrition, and was pleased to see how strong Scarlett was.  She'll see her one more time before surgery in May, and we'll begin vaccinations in the summer.

Side note:  Scarlett has not been vaccinated because her chemo-weakened immune system was not up to the task of producing the anitbodies needed to ward off diseases.  Once her system has more fully recovered, she will get all the normal vaccines, or whatever her ever-expanding team of doctors agrees is best.

That's just one of our appointments this week; it's another marathon week for us, with PT, OT, pediatrician, and a bunch of others for Scarlett, plus dentist for mom and dad, our sign language class and the end of swimming lessons.  I have been tutoring after school for a few weeks, so we have to make sure we remember that, too!

And, if things weren't crazy enough, Scarlett and I were in a minor car accident yesterday.  We're both fine, the car was not damaged, but it was not a good way to start a Monday morning!  However, I wanted to mention how very glad I was that Scarlett is still positioned rear-facing in the car.  We were stopped, and the other car hit us from behind, which made my neck tweak.  It was sore all day.  Scarlett was safely buckled and was not bothered at all by the crash.  I would have hated for her to have suffered any neck damage from something so minor.  It reinforced my commitment to keeping her rear-facing as long as it is safe in her car seat - up to 45 pounds for our particular seat.  The newest recommendations from the National Highway Traffic Safety Administration and The American Academy of Pediatrics is to keep kids rear-facing as long as possible, rather than turning them around at 1 year old/20 pounds as in years past.  It's not dangerous for legs to be touching the seat back as long as the child is within the height/weight limits of the seat.  I know that many of our readers have kids Scarlett's age, so I wanted to share this.  Check out the FAQ at CarSeatSafety.org for more car seat information. 

Withdrawal

Scarlett has been off chemo for almost a month now.  She is feeling better, has more energy, is making great developmental strides and is really exhibiting her little personality.  It is wonderful! 

However, there is a flip side to being off treatment that is keeping me from fully enjoying the freedom.  We have not seen a doctor in more than two weeks.  For most people, that would be a good thing, but for me, it feels like we are standing on the edge of a cliff all alone.  We have seen a doctor nearly every week since Scarlett was born, and at least once, sometime daily, every single week since she was diagnosed at 9 weeks old.  I have never parented without doctors.  I have never not known her weight for more than a week, or, for that matter, not known her whole CBC blood panel.  For the first time in 15 months, she is not getting any medications.  As much as I would like to say I am happy to be free of the constant doctor supervision, THAT is what has been our normal.  THIS feels strange.

Logically, I know that a doctor seeing her will not tell us if there has been any significant tumor growth or shunt changes.  I know that the tumor is not more likely to grow back now that she is off chemo. The doctors are really just checking her over, watching for long-term effects and changes, and nothing has been significantly different for months.  I even know what to look for - neurological changes, rashes, bumps, bruises, weakness - if something were really wrong.  But there has been a security level in having a professional see her so frequently that I grew to rely on, and without them, I find myself second guessing myself, worrying and counting the days until we can see them again. 

An example:  Last Wednesday, as we were taking off her jacket at therapy, I noticed a rash that stretched from her forehead to her ear.  It didn't seem to be bothering her, she had no fever, but it was new and strange.  Her therapist, following protocol, asked us to take her home since we didn't know what it was, and we agreed, not wanting to get anyone else sick.  Knowing her immune system is still significantly weakened from chemo, I was concerned.  As soon as we got to the car, I began making phone calls, trying to figure out if we should take her to the hospital clinic, to the new pediatrician, apply hydrocortisone, give Benadryl or just wait and see.  It took ALL DAY to hear back.  We called again, e-mailed and called someone else.  By the time someone got back to us, the rash was gone.  We used to get called back almost immediately for less serious stuff.  There are other patients that need their attention, and I want them to get what they need.  But would they have called back sooner if it was something more?  

I know Scarlett is still a priority to them, and I would have done more if that rash had gotten any worse.  But it felt so strange to NOT have the doctors panic, to NOT have an emergency visit and NOT to have to worry (which I did anyway.)  I think that over time, this feeling will fade.  The further out we get, the easier it will be.  We will still stress at MRI time, worry if anything seems different, and we will still watch her like hawks.  One thing I have learned in the whole experience is that I have pretty good instincts when it comes to Scarlett's health, and following those instincts usually leads us down the right path.  I just have to learn to trust myself to let things be good, to let go of the fear of it all coming back again and let her be her.

17 months!

Scarlett is 17 months old.  I don't actually know her current weight and height because we don't see the doctor every week!  She's probably still approaching 21 pounds.  She is solidly in 12-18 month clothes, but is beginning to outgrow pants, thanks to her non-walker thighs.  She still has tiny feet, only in size 3 shoes.  She has become an expert at removing hats, headbands, socks, and of course, her right hearing aid, which seems to disappear with ninja-like stealth.  She is babbling constantly, and we're hearing a lot more "mama" and "dada" (along with baba, gaga, wawa, and a bunch of others), and starting to see more word recognition in her little face.  She is SO expressive - giant smiles (as long as no cameras are present!), blowing raspberries, flapping her arms, kicking, and shaking her head, sometimes all at the same time!  We're trying to catch her playing peek-a-boo on video to share.

Wild hair after a bath!

She working on her 16th tooth - an even 8 on top and bottom - which is good, because she is discovering the joys of chewing!  Not just spoons and momma's fingers, either.  She likes purple star puffs, Multigrain Cheerios and all kinds of crackers.  She is a big fan of dried fruit, particularly mangoes, apricots, and bananas.  She still hasn't mastered drinking, but we're hoping that her new interest in swallowing snacks will translate to swallowing liquids soon.

She is working hard on holding herself up on hands and knees, and will occasionally reach out for something she wants.  Our current physical therapy goal is promoting more rotation at her waist and hips so she can begin transitioning from sitting to laying, laying to sitting, sitting to crawling, and eventually to standing.  It's hard work, but she such a trooper about this stuff.

The most exciting thing about the last few weeks has been starting swimming lessons!  Scarlett LOVES the water, and we thought that swimming would be a good way to incorporate some more therapeutic "exercise" into her routine in a fun way.  We take a mommy- (or daddy) and-me class at an indoor pool complex down the street from our house, so the water is warm and we are comfortable in swimsuits despite the storms outside.  She is already learning to hold the side of the pool, roll in the water, kick her legs, splash and - her favorite - to jump in (from sitting on the side). 

Just for fun, here's one of my very favorite pictures of her, from exactly one year ago...

I remember taking this picture, then posting it on the blog from the hospital while she was getting a major blood transfusion later that afternoon, getting ready to begin her second round of chemo.  She was so tiny, so sick, but so happy.  Now she's 15 months out from diagnosis,  tumor-free and still full of smiles! 

G-Tube Life

Scarlett has had her g-tube for nearly a month now.  We have all adjusted to it pretty easily, though it has posed some new challenges for both her and us.  Here's a run-down of g-tube life for Scarlett.

What it is:  The gastronomy (g) tube is a feeding tube that is placed in the abdomen for direct access to the stomach. It looks like this:

The top part sits right on her stomach.  The balloon is in her stomach, and is inflated with water from the little side port on the right.  The top just pops closed, very similar to an inflatable pool toy.  Her abdominal wall and stomach are in the process of healing into a tract (or stoma) that will stay open for a while even if the tube is removed - much like a piercing.  When she no longer needs the tube, it can be removed, and the stoma will heal itself.  

A lot of people ask us if it leaks.  It doesn't really; yes, some drips of stomach fluid ooze out through the stoma, but we use gauze around it to absorb anything.  It's not messy at all.

To use it, we attach an extension tube into the top, which attaches to a syringe of formula.  The formula goes straight into her stomach, followed by a little water, and then we close the top.

Scarlett's belly buttons

Better:  Scarlett had an NG tube for a long, long time.  It went down her nose and into her stomach, but did the same job as the g-tube.  The g-tube is a big advantage to her.  It eliminates the awful tape on her cheeks that held the NG in place; it only needs to be changed every 3 months, rather than every month, and it doesn't hurt to change; and, it is hidden under her clothes, so she can't really pull at it.  She can still bathe, swim and roll around on her stomach.  Since the NG came out, we have seen improvement in her perpetually runny nose, rashy cheeks and, most importantly but just slightly, her swallowing.  We like that there is no more yellow tube to be pulled out in the middle of the night, or to leak all over our couch/cars/clothes/dog/bed/carpets, or to get caught on something when we pick her up.  The extension tubes are detachable, so we just have to make sure we have one anytime we want to feed her (which means we have tubes in every bag, car, lunchbox and at Grandma's house, just in case.)

Not so great:  Having the g-tube has made Scarlett even less fond of tummy time.  She pretty much just lays her head down and whimpers.  We're working on it in therapy, but she's just not quite able to hold herself off her stomach yet.  They tell us it doesn't hurt (and it doesn't seem to) but she is very easily deterred from doing anything she finds unpleasant.

Another challenge has been dressing her.  The tube it just above the waistline of most of her pants, but thick waistbands, like on jeans, rub against it when she sits up.  We need easy access at least 4 times a day, so one-piece outfits are a hassle.  However, since she is still spending most of her time on the floor or being carried, onesies are still the most practical.  So, in my crafty-momma way, I found some solutions.  For those onesies that had cute pictures on them, I cut the snaps off and hemmed them to make t-shirts.  Since I usually dress her in layers, all the plain onesies are getting a different treatment: I am in the processes of adding welt pockets to anything that snaps or zips (using a pattern I found at Adapting Creatively).  It works particularly well on BabyGap's Bodydoubles that have an attached t-shirt so that it is covered.  This has been the neatest-looking, most accessible solution so far.  We tried a few Tummy Tunnels, iron-on patches with holes in the center for g-tube access, but they aren't working as well for us.

The hardest part is really the most obvious: it's still a tube.  It's still a really abnormal way to feed a baby, and it feels very strange to hook a tube up her whether she wants to or not (she still doesn't really indicate hunger, so we just have a set schedule).  With chemo over, I am anxious to see the normal life begin, and this is the most abnormal thing we have.  I see my friends battle their toddlers to eat, and I will admit there is a little part of me that likes to be able to feed her on a schedule, knowing she is getting all the nutrients, minerals, calories and water she needs...I just wish it wasn't by tube. 

So Busy!

I haven't had a chance to write much in the last few days, but I will update with more as soon as I can, including an update on the g-tube, life without chemo, and pictures of Scarlett's first swimming lessons!