Author: Phil

Back in May of this year…

I meant to post this video as part of Serenity’s 1 year survival with Leukemia. I actually put the video together quite a while ago but couldn’t bring myself to make it public because it was painful for me to watch. I put it on the kids computer a while ago and now Serenity watches it almost every time she gets on the computer. It’s not so painful anymore so I think I can make it public.

It’s probably close to time to start working on ‘Part 2’ to cover the year since diagnosis and how she’s doing now. Anyway, I hope you all enjoy this…. (it’s formatted for full screen play, there’s a button on the bottom bar of the video that will make it full screen)

Serenity’s Cancer Journey from Phil801 on Vimeo.

A Day in the Life of a Cancer Kid at the Clinic

This Saturday is Serenity’s 1 year survival anniversary! I’m planning on doing a couple special posts for that day.

For her last clinic visit of her 1st year (which was last week) we took tons of pictures of her going through the Clinic process. Keep in mind that last year when she first started going everything was horrible and it was nearly impossible to get her to do anything. Now she goes through the routine pretty much on her own! We’re so happy for her for how well she’s doing! We know it could be much worse (as it is with some of our good friends we’ve made since being diagnosed) for her and we’re very grateful that we haven’t had major issues – not sure how we’ve gotten by without any MAJOR hitches so far.

So, with no further adieu and without anymore waiting:

Crashing out on the hour drive to the Hospital.

In front of the hospital with Mom

Outside the Hemo-Onc Clinic door

Making crafts while we wait for our room (they have several GREAT volunteers that sit in the waiting room and entertain the kids)

Starting the check-in guantlet run – getting measured…

Getting weighed….

Blood Pressure….

Picking out a toy…

Finally in our room! Now the fun begins…

Getting stickers made from her admin bracelet – since day one she has always had them make her extra stickers, she puts them on her shirt.

Getting prepped for port access…

Accessed, getting blood draws…

Getting chemo through her port…

Her AWESOME Oncologist, Dr. Fluchel comes to visit and do her checkup.

Then it’s downstairs to the RTU to visit her favorite Nurse, Dahlia, who always showers her with stickers, toys, tattoos and whatever else she can find – we LOVE Dahlia!

Waking up from anesthesia and having a Lumbar Puncture done…. NOT fun.

Pretty much recovered thanks to the help of Cheetos and Gatorade! Now it’s time to go home after a 5 hour day at the hospital!

She checked out great at her visit, excellent blood counts and growing well!

Update – Almost a year!

In a couple weeks it will be Serenity’s one year anniversary as a Cancer Survivor!

It’s been a while since we’ve updated the site, things have been going so well lately that there hasn’t been much interesting to blog about. Currently Serenity is a happy, healthy, enthusiastic almost 3 year old with a huge love of life! We’ve recently moved even farther out in the “country” to a great place on 50 acres with lots of animals and room to play. She plays outside so much lately that she already has a tan that most people would envy!

She is SO PROUD of all her new hair! She loves to style it to make a little unicorn horn out of her bangs. At the same time she really wants to be like Daddy and thinks she should still have her head shaved. Every time I shave my head she begs me to shave hers. 🙂
After almost a year of regularly taking chemo, and considering how difficult it was a year ago to get her to take it, she is a real trooper about taking her meds. She still has to take several medications each day, depending on the day of the week. Every night I wake her up at midnight to give her her chemo. I just slip the syringe in the corner of her mouth and she either sucks it down or takes it from me and gives it to herself. It’s so nice to have her just take it now and not have to fight over it. Cancer sucks but having made it a year it’s become fairly routine.

The Saga of Chicken Pox with Leukemia

So Serenity ended up spending 24 hours in the hospital, now she is home on IV meds. Here’s the interesting thing, we’re basically being her primary care providers – that’s how much training and experience we’ve gained in medicine this year.
Chicken Pox is a potentially deadly combination with Leukemia, but only if there is […]

So Serenity ended up spending 24 hours in the hospital, now she is home on IV meds. Here’s the interesting thing, we’re basically being her primary care providers – that’s how much training and experience we’ve gained in medicine this year.

Chicken Pox is a potentially deadly combination with Leukemia, but only if there is a severe reaction. So the Oncologist had her check in to the ICS ward at Primary Children’s Hospital so they could observe her reaction. 24 hours later she still wasn’t running a fever and was doing quite well, except for the sheer boredom! She has pox all over her body but it’s a mild case, the biggst concern is if they get in her mouth and respiratory tract. We are monitoring her temperature and her breakout, if they accelerate she’ll be back in the hospital, otherwise she’ll work through them here.

She is on a broad spectrum antibiotic (Acyclovir), taking 70 mls every 8 hours. She takes them through an IV pump which feeds into her port. This means we are performing nurse duties of managing sterile environments to hookup her IV to her port, monitoring the drip, etc.

I know there is a lot more to medicine than this, but sometimes it feels like we just need 10 more credits to be a full blown nurse. )

Here’s a few pictures from this hospital visit:

The whole family hanging out

 

She’s pretty sure that she’s at her cutest with her tongue sticking out!

See what I mean? ) She’s holding her horse, he’s her ‘proxy patient’ – he gets most of her procedures done to him before she does. Her other animal is her monkey because my nickname for her is “Monkey Butt” – I have no idea why!

 

 

#serenleuk

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Chickenpox! Serenity heading back to the Hospital

 I swore I would be better about blogging Serenity’s hospital/leukemia journey than I have been lately – unfortunately, now is my chance to make good on that.
 Serenity (my youngest daughter who has leukemia) has just been diagnosed with Chickenpox, one of the more dangerous things that could happen for her right now.  Adria is currently taking […]

 I swore I would be better about blogging Serenity’s hospital/leukemia journey than I have been lately – unfortunately, now is my chance to make good on that.

 Serenity (my youngest daughter who has leukemia) has just been diagnosed with Chickenpox, one of the more dangerous things that could happen for her right now.  Adria is currently taking her to Primary Childrens Hospital to be admitted where they’ll pump her full of antibiotics again and try to fight off the infection.  Adria says she (Serenity) is MAD and is chanting “I DON’T WANT DINNER IN THE HOSPITAL!”.  She is tired of being stuck in a hospital bed and the worst part is, because she has chickenpox she will be isolated in her room and not allowed out to play. 

 And of course, we’re as sick as she is of being stuck there.  No idea how long this one will last, I’ll post updates as we get them.

#SerenLeuk

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