Lifting Up Serenity

This is Day 7 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 6 is here.

Depending on how her bloodwork looks tomorrow, Serenity is doing well enough that her Oncologist is ready to discharge her!  Her blood counts are way up – not anywhere near a typical healthy person – but up enough that she is stable and can function safely outside the hospital.  She’s still imuno-compromised and we’ll have to be very careful, but she’s out of the high risk zone.  It’s all contingent on how her blood is doing tomorrow, so cross your fingers with us that they’ll be good and she’ll be able to go home!

She was doing well enough today that she was able to leave the room and ride around the ICS Ward in a toy car.  She still had to wear a mask, which she hated at first but decided it was worth wearing over going back in her room.  She spent about half an hour riding around and looking out the big picture windows at the mountains and city.  It was pretty exciting for her to be able to get out of this boring room, but she was pretty worn out by the end of it.

She didn’t throw up at all today, her new anti-nausea drug, Zofran, is doing wonders for her!  She did a pretty good job of taking all her meds today and ate a decent amount of food.  Her tastes have changed quite a bit, but we found something today that she definately loves – cheese sandwiches!

The dramatic part of the day was getting the dressing changed on her port catheter. 

 

 You can see here that there is a LOT of tape holding her needle in place.  All of that had to come off and it was a pretty painful process.  Fortunately, she doesn’t have to normally have that much tape on.  It’s only dressed like that when it is first installed.  Her new and all future dressings are much better designed.  Here’s what a port catheter looks like when it is “accessed” which means the needle is in.  This may look rough, but it is definately a blessing for her to have since she won’t have to be stuck over and over by needles drawing blood and giving her treatments over the next 2 years.

She’s still crying in this picture from having all that tape removed.  The black part with the white wings is the port needle, the other bandages are the insertion points from her surgery.

So, having cancer aside, things are really looking up and improving.  Hopefully we can go home tomorrow!

Goals for today were:

– No puking… check

– Take oral meds better….check

– Eat some food….check

 

Other than some cancer specific issues, there was a lot of happiness in our hospital room today.  The “Child Life” group brought teddy bears to everyone on the floor.  The above picture is of Serenity snuggling with hers.

This afternoon we played a game with the surgical gloves.  I would blow the glove up and keep it on my mouth, she would grab a finger on it and pull it lose so it would shoot across the room.  She actually laughed, several times! 

 

But fun never lasts for very long around here and this time it was being interrupted by the nurse bringing in more meds for her to take.  She spent a lot of time playing with all her toys and was just happy doing that.

 

Several times today it was easy to forget that we’re here fighting cancer, but that is short lived because there are just too many reminders.  The doctor started her on a new anti-nausea drug, Zofran, today and it made a huge difference!  She didn’t puke a single time today, even with getting her chemo treatments today. 

So, what are the reminders that she has Leukemia? Well, besides the really obvious, if you’ve noticed, in every picture I’ve posted of her she is laying down.  There is a reason for that, Leukemia ravages your body and can cause huge amounts of pain in your bones.  For Serenity, that is all focussing in her legs.  She can’t stand up, when she does she cries in pain. She hasn’t stood up for almost a week now.  Not only that, but she can’t leave her room – at all.  She is allowed to leave if her ANCs, which is a measure of white blood cells, are above 500.  She can’t leave the cancer ward until they are above 1,000.  For a healthy person, that cound is 7,500 – 10,000.  Serenity’s ANC count is 100 which means her immune system is pretty much non-existent.  Not only that but it has been at 100 for the last 3 days.  It’s supposed to increase by at least 1o0/day.  Going home means leaving the Cancer ward which means she has to be at 1,000 in order to go home.  We’re concerned that that isn’t happening. 

She also had to get an intra-muscular chemo treatment today.  They came in and shot it in her thigh muscle.  This particular med burns badly once it is in.  Serenity cried in a way that we have never heard her cry.  It was awful.  Then there are the oral meds that she has to take pretty much all day.  I think she is on about 20 different drugs, more than half of which is taken orally.  She HATES taking oral meds, fights it like crazy.  Yesterday when I was giving her one, she was screaming at me (like every time), she looked at the syringe, looked at me, looked back at the syringe, reached up and pulled out the plunger from the syringe!  It’s a fight every time we have to administer oral meds and it usually ends up with about a fourth of the drugs being on her shirt, on my shirt and on my face. 

She has also made some interesting adaptations.  She now pretty much seems to think of her IV line as part of her.  Whenever she moves, she keeps an eye on it to make sure it doesn’t get pulled tight.  When the nurse comes in to take her vitals and gets the blood pressure cuff down, she lifts her arm so they can wrap it on.  She also points with the finger that she wants the oxygen sensor connected to.  She is quickly becoming a child who is adapted to being a hospital kid. 

That’s pretty much all for today.  It was mostly non-eventful, thus a rather short post.  Hopefully tomorrow is a relatively easy day as well and another short blog post.

 

This is Day 5 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 4 is here.

Serenity had some happy moments today, but they were short-lived.

(click the picture for a much larger version)

Today was actually a pretty rough day for Serenity, it was a day filled with more drugs/meds than most people take in a year and throwing up time and time again.  As a father, it is very difficult to watch your baby go through this.  My heart goes out to all the Dad’s (and Mom’s) who have paved this road before us.  This is something you truly cannot know until you’ve experienced it, Cancer is now my biggest enemy.  If Cancer was something living, even if it was Hulk Hogan or Andre the Giant, I would find a way to beat it down and kill it, even if it killed me to do it.  I don’t have words to express the anguish and the frustration that this disease brings.  It’s bad enough that it’s trying to kill her – but it’s also making her so sick and miserable that I can barely stand it. 

There’s a saying that everyone knows: “When life gives you lemons, make lemonade”.  I would also say that, when the biggest challenge of your life comes along, own it and conquer it.  How do you make lemonade out of cancer though?  How do you own a challenge like Cancer?  Well, for those who know me well, you know that I’m a little bit wacky about things sometimes.  So, with total wackiness, here’s our first ownage and lemonading of Cancer:

 

This is really a bit of a homage to the TV show Kyle: XY.  In that series, a girl who has been hiding her cancer ‘comes out’ about it and gets a shirt that , I believe, says “Cancer Girl”.  But I liked Cancer Chic better.  Of course, Serenity can’t read or even understand what her shirt says/means.  But it’s really more about Adria, me and the rest of the world.  Serenity is now a Cancer Chic.  She (meaning us) is taking ownership and full acceptance of the fact that she has cancer, and the lemon is now lemonade.  Or something like that.  I figure it’s kind of like a bald guy wearing a “Bald is Beautiful” shirt.

Other than sleeping for several hours today, most of the day was filled with taking medicine/drugs, throwing up said drugs, and then having to take the drugs again because she HAS to keep them down.  If you’ve noticed in the pictures we’ve been posting, sometimes she looks disheveled and sometimes she looks like she is freshly changed and her hair is done.  She goes through several outfits a day and her hair is constantly being done.  But guess what happens when you’re puking hard every half hour – you look like crap! 🙂  Cancer/Chemo is definately the antithesis of a beauty pageant. 

There was a time or two today where she was feeling pretty good and even acting like her old self.  The first picture of this post shows her at her best today.  She was perky and energetic and playing with several of the new toys we got her from the ChipIn fundraiser.  Seriously, that top picture is a result of everyone’s donations.  Thank You, from the bottom of my heart.  Here she is playing with several of her toys.

There has been a lot of progress on the new site, www.LiftingUpSerenity.com today.  A bank account has been established and a PO Box that people can mail checks to. I have heard of several efforts underway to solicit funds to that account and several creative efforts to raise money for it.  If you’re intersted in the details on that, click through the above link and then click on ‘Donate’. 

The most exciting thing to me is that we’re now working on establishing a new non-profit foundation called “The Serenity Foundation” that will specifically financially help very young children who are fighting deadly diseases like Cancer and Diabetes.  This is a much longer process.  We’re learning what is involved in creating a 5013C (non-profit corporation that is able to provide tax deductions for donations) we’ve found that it can take anywhere from 6 weeks to 9 months (it’s ridiculous that getting the government’s approval for something like this takes as long as it does for a baby to gestate).  A couple lawyers have volunteered their time to help us navigate that process and will be doing all the filing and other work for us.  In the meantime, we are looking into options to piggyback the new foundation with currently existing ones.  We’ll post details as we learn them.  I’m really excited about doing this because once Serenity is cured, we’ll be able to keep giving back and hopefully help lots of other kids. 

I’m very grateful to all the people who have donated time, money and energy so far in Serenity’s name.  You are all the Angels Among Us.