This is day 23 of my baby, Serenity being diagnosed with and treated for Leukemia. Day 19 is here.
A lot of the time, Serenity looks like this:
A lot of the time, she also looks like this, often just seconds after looking the way she did above:
I’m not sure what set her off in this case, it may have been finding out she has to take meds soon, it may have been that she was in pain, it may have been that someone touched her bed or anything else. Steroids and a 2 year old that doesn’t quite talk can be an interesting combination, anything will set her off. As if being 2 isn’t hard enough, she’s got Leukemia and everything that goes with it piled on top – and it makes for a tiring combination as a parent.
Saturday night her zofran (anti-nausea meds) and her steroids met up in just the right combination and she went on an eating binge! Literally about every 30 minutes she would wake me up and place her food order – eggs, yogurt, chips, popcorn, cheese, cereal, tortilla with peanut butter, bread with ranch – whatever she was craving at the moment. She ate about half a dozen eggs, 3 cups of yogurt, and tons of chips, popcorn and everything else listed up there, she put me to shame in the eating department! It then carried on through most of the day today although not quite as intensely.
After spending a full week in the hospital, then being stuck in the house for 2 weeks with only going to the clinic, we’ve had on onset of Cabin Fever. Earlier in the week we started venturing out to the back yard to swing. Then on Friday we decided to have Talysa babysit the other kids while Adria, Serenity and I went to a 12:30 showing of the new Narnia movie. We knew that since it had been out for a few weeks and it was the middle of the day that the theatre would be mostly empty. We decided that if we sat in an isolated section of the theatre Serenity should be ok without her mask on – but she had to wear it into the mall and theatre in case anyone got close to her.
She had quite a bit of fun hanging out with Mom and Dad and is probably the only 2 year old that will sit quietly through a movie. On Saturday we took the whole family to the Orem Summerfest which is basically a big carnival. She was able to have a lot of fun hanging out without her mask on, I wanted to enter her into a hot dog eating contest – she would have killed her age group 🙂 While we were walking through the booths at the fair section, all the sudden she started freaking out and screaming something we couldn’t understand. At first we thought she was hurt so we took her out of the backpack – but then she started pointing behind us and screaming, so we backtracked. We went one both back where a guy was standing there innocently eating chips from a bag. She pointed right at him and screamed what we now understood to be “Chips!”. We actually had some in our day bag and got them out for her – but that guy is LUCKY that she can’t walk! 
We normally use the Kelty backpack for hiking in the mountains, but this time it came in really handy in a different situation. On a side note, if you have a toddler, I highly recommend the Kelty line of kid packs – they’re awesome and we love them! Serenity also got to ride on the carousel – it was the only ride she could go on since all the other ones required her to sit down.
She got a bit tired of it towards the end, and so did I! So, in contrast to last weekend, which totally sucked, this weekend was a lot more fun, and a lot more normal with being able to get outside and do stuff with the family. Normal now means lots of new rules though.
Staying on the fun side of things, while we were at the hospital we were given a list titled “You know you’re the parent of a Cancer Kid when…(1-100)”. A lot of these won’t make sense to most readers – which is actually number 45 “You don’t have to ask ‘what’s that mean’ to the previous 44 items”. But for the cancer parents reading, I wanted to list out the ones that already apply to us and for eveyone else, give a glimpse of what’s different for us.
1. You carry a tube of Emla in your purse instead of lipstick. (We actually carry almost an EMT’s med kit )
3. You can sleep anywhere, and anything that reclines more than 15 degrees looks “comfy”
15. Your child asks whats for dinner and you are relieved you don’t have to administer anti-nausea meds
16. Your 2 year old knows where all the medical equipment goes, and how to use it.
17. Your childs first word is a medical term. (Serenity uses several words, and now at least 5 are medical – including ‘port’)
18. You keep a bag packed at all times like you’re 9 1/2 months pregnant.
19. You can eat with one hand while you hold the barf bucket with the other.
20. Your childs bedroom looks like a Toys R Us store.
24. You know medical terminology better than your family practitioner. (for us, it was the ER doc)
29. You have a syringe in your purse (diaper bag) and you’re not diabetic. (I had one in my pocket the other day for some reason)
30. You have more meds in your cupboard than food. (we have a whole cupboard JUST for meds and equipment)
31. You can read your kids chart better than the nurse.
33. You and your wife get matching stress tattoos. (I’m working on this one actually)
34. You are teaching your daughter parts of her body and when you point to her chest she says “port”.
57. When the siblings want to know what the child’s counts are so they know whether they can go inside and eat at McDonalds.
58. When your kid asks for a Happy Meal, you immediately turn around and start heading to McDonalds as fast as you can, before the craving wears off (and if they’re on steroids, ask “A Happy Meal or a Super Sized one?”).
79. When you can whip up a 7 course meal in minutes for a child having a steroid pig out – and you’re happy about it!
82. You are totally comfortable in an examination room and don’t think twice about getting items out of the supply drawers.
84. When its time for your 2 year old to have her vitals taken and she lifts her arm and extends her finger without being told, or complaining – all without looking away from her movie.
87. When you have a collection of barf buckets in every room of the house.
91. When you think of anything your child will eat and keep down as a “nutritious meal”, even if it’s cookies and candy.
100. Your child has her own website to keep friends and family updated.
The story of Serenity’s battle with Leukemia begins here.
While I don’t have a child with cancer, I have been able to relate to so much of what you as parents are going through as I am the parent of a ‘cardiac kid.’ It is so painful as a parent when they are small and cannot communicate their needs nor understand why they are suddenly in so much pain often inflicted by those they trust the most-their parents. People often asked us how we do it, meaning weeks in the hospital, feeding tubes, iv pumps, medicines measured so precisely, another child (we have twins), and our response is “it is amazing what becomes normal.” This is a trying time for your family, your whole family. While I do not have any spare money (sick kids use it up very quickly) to donate, I do have some advice: embrace this new ‘normal,’ don’t fight situation you can’t change. Your job is to be your child’s number one advocate (you seem to be doing well with this), you know her best. Never tell yourself it is nothing or feel like you are pestering your doctor (its your job now!), you will never regret it if it is nothing, but you will never forgive yourself if you talked yourself out of calling and it was something. I will keep your sweet baby in my thoughts. All the best to your family.
Lisa – one of our very good friends has a cardiac child and only now can be begin to understand what she has gone through. Kids in Crisis all go through the same theme though, we can all relate very well. That is WONDERFUL advice and is something we’re trying to fully embrace right now, thank you for sharing it. I think most of us have a learned belief that doctors are all-knowing and infalliable. We’re quickly learning that that is not the case and that we are the ones who are studying her charts carefully, journaling every detail every day and looking at the trends, reactions and so on. The Oncologists are wonderful – they listen carefully to every word we say when we’re describing details since the last visit. They take our recommendations and concerns seriously and work with us when we want to change medications somewhat, etc. It’s different with other doctors though – the ER doc that we saw wanted to totally cover his butt – chest x-ray, catheter for urine, and other wacky ideas that didn’t apply in the least. He was grabbing at straws trying to make sure he didn’t leave something out – but he had no idea what he ought to do and what not to do. We had to be firm with him about specific things with her port, with what tests he could/should run – or not. You’re absolutely right though – we are their number one advocate and it’s our job to make sure that she gets everything she needs.
I hope all is well with your child, normal is just what we become used to.