Serenity – Page 13 – Lifting Up Serenity

Organizing a blood drive – thoughts and volunteers wanted

This is Day 39 of my baby, Serenity, being diagnosed with and treated for Leukemia. Day 37 is here.
Serenity’s life was saved because people donated blood. I have a lot of guilt about that – I have MAJOR needle-phobia and have always avoided blood donation. But as I watched Serenity bravely face getting poked by […]

This is Day 39 of my baby, Serenity, being diagnosed with and treated for Leukemia. Day 37 is here.

Serenity’s life was saved because people donated blood. I have a lot of guilt about that – I have MAJOR needle-phobia and have always avoided blood donation. But as I watched Serenity bravely face getting poked by needles over and over and over again (at one point, before she got her port, she had bandages on both her hands and arms and they were going to access her through her foot) I knew that was going to change forever. As the next week went by and she received several life-saving bags of blood and platelets, I knew that I was going to become a blood donor for life – and that I would advocate and encourage others to do so as well.

And so it begins – the quarterly Serenity Foundation Blood Drive. My good friend, Rachel Strate, is one of my heroes – she is an avid platelet and blood donor – and I’m counting on her and others to help put all this together. I’ve talked to ARUP (our local blood center) and there are some rules to doing a blood drive, one of them is that I have to get 35 people to commit to donating blood at the drive. Another is getting a location, but I can take care of that one. I’m thinking somewhere around Draper or Thanksgiving Point. We’ll do it towards the end of July and I’ll be announcing a date in the next couple days. I’d like to make this a Geek Dinner/Tweetup type of event with blood donating, blogging, tweeting and eating going on.

I’d also really like to make this more than a local thing. If you’re reading this and you would like to help out and organize a local blood drive to coincide with ours, PLEASE DO! Let me know and I’ll try to help publicize it. I think it would be a LOT of fun to have multiple blood drives going on all over the country at the same time and for us to all be blogging and tweeting pictures and updates at the same time!

This post is really a notification and call for volunteers. If you are willing to donate blood with us, please let me know. If you’re willing to organize a local drive, please let me know. We’ll get customized banners like the one above made for your drive and have ones that everyone can put on their blog if they want.

Blood is absolutely critical to saving little lives like that of my daughter and so many others. Every one of you have blood and thus the capacity to help save those lives. Please, Please join us in providing the elixir of life!

As a side note, I know that blood drives are nothing new and that many of you may already give blood regularly. I also know that according to ARUP, only 4% of those who are able to actually donate blood. This is a call to action for the other 96% – join me in becoming a willing donor!

The story of Serenity’s battle with Leukemia begins here.

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Leukemia: So cute it just might kill you.

This is Day 37 of my baby, Serenity being diagnosed with and treated for Leukemia. Day 36 is here.
K, I admit that I’m probably, maybe a teeny little bit biased here – but I think these are super cute pictures of Serenity (probably not quite as cute as your kid though ). I’m calling […]

This is Day 37 of my baby, Serenity being diagnosed with and treated for Leukemia. Day 36 is here.

K, I admit that I’m probably, maybe a teeny little bit biased here – but I think these are super cute pictures of Serenity (probably not quite as cute as your kid though ). I’m calling this photo shoot (we took about 300 pictures) a “Celebration in Baldness” and these are my favorite shots. We’re trying to select one to be her new banner glamour shot on her website, we’ve narrowed it down to these and want to know – what do YOU think? Please let us know in the comments which of the pictures you think are the best “poster child” shot! Thanks! (each photo is linked to a larger version) You can view all the photos on Serenity’s new flickr feed here.

Picture 1:

Picture 2:

Picture 3:

Picture 4:

Picture 5:

Don’t forget to vote in the comments, and please share this post if you’re so inclined, we’d love to get tons of feedback!

The story of Serenity’s battle with Leukemia begins here.

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Living with Leukemia: Going bald at Age 2

This is day 38 of my baby, Serenity being diagnosed with and treated for Leukemia. Day 36 is here.
Yesterday we had another clinic visit, Serenity got 3 Chemo treatments; an IV one, an intrathecal one (in her spine) and an oral one.

Some things to note in that picture: She’s wearing her new medic alert bracelet […]

This is day 38 of my baby, Serenity being diagnosed with and treated for Leukemia. Day 36 is here.

Yesterday we had another clinic visit, Serenity got 3 Chemo treatments; an IV one, an intrathecal one (in her spine) and an oral one.

Some things to note in that picture: She’s wearing her new medic alert bracelet on her left hand, it has her name, that she has Leukemia and her blood type on it. She’s also wearing her courage beads, she gets a bead for every major treatment/accomplishment/torture that she has endured – it chronicles her journey through Leukemia treatment and is already half full. Also, she’s wearing a hat because her hair is extremely thin and we were out in the sun. She’s holding her hospital ID tag which is gets put on her arm at the next stage of her visit. She actually ends up with a second one on her ankle when she gets put under. She has a huge collection of the bracelets now, when we cut them off every week we add them to her pile. One of her routines at clinic is to have about 6 stickers made from her ID tag and stick them all over her shirt and mine while we’re waiting for her treatments.

When she gets her intrathecal chemo, they put her under with general anesthesia to do the lumbar puncture. This is her in the recovery room right after the procedure. She has to fast for these and wakes up very hungry, it’s a celebration of eating and drinking!

Her hair has been shedding like crazy lately and tonight we decided it was time to shave it – she had big bald patches all over and was starting to look pretty ragged. Not only that, but every time we picked her up we would come away covered in hair! Here is a picture of her in the hospital when this all started – with all of her hair:

This is how she looked this evening right before we shaved her head:

Shaving her head was a bit of a family event:

And, here is the new Poster Child for Leukemia!

She keeps rubbing her head and saying “Bald!”, then rubbing my head and saying “Daddy Bald!” Then she points to her port and says “port!” and points to my chest and says “Daddy no port”. She’s pretty proud of having something so cool that noone else in the family does.

Her new oral chemo, 6-MP, is going pretty rough for her. She hates how it tastes, so I tasted it – much to Adria’s horror – it doesn’t taste too bad at first, but it does have a yucky aftertaste. I only put a dab on my tongue, I can’t imagine what 2 mls of it would taste like. She nearly throws up every time she takes it and it has made her dis-trust any medicine again. She was doing pretty good at taking them until the 6-MP, not that she liked it but it had gotten fairly routine and easy.

Living with Leukemia is becoming routine for us, Serenity being bald is kind of the final committment for it – or so it seems. She now looks a lot more like someone suffering from cancer.

The story of Serenity’s battle with Leukemia begins here.

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Another 2 weeks of Leukemia

Leukemia has become the centerpiece of our lives; instead of studying statistics and other computational research I’ve been reading lots on Leukemia, cancer in general and Hematology. Everything we do now revolves around Leukemia and I’m striving to make The Serenity Foundation become a reality so that my work time can revolve around it too. […]

The last two weeks have been a whirlwind of first, dealing with roid rage and roid binges and for the last week, having our little girl come back to us. Serenity spent a month on steroids and the last week was the worst. If you looked at her wrong, she would fly into a huge tantrum and hurt herself and anyone or thing around her. She was also eating like a madman – Last Friday I bought 4 1/2 dozen eggs thinking they would last her a while – by that Sunday afternoon they were GONE! About every thirty minutes to an hour she was waking up wanting 2 eggs, some yogurt and chips. She would gobble them down – and by gobble i mean use a fork with her right hand to put a piece of egg in her mouth while grabbing the next piece at the same time with her left hand. Once she had stuffed 2 eggs in her mouth, she would eat chips and yogurt for a while and then be ready to go back to sleep. This would go on all night long – for that period, Adria and I got VERY little sleep and what we did get amounted to cat-naps.

Last weekend she finished her steroid treatment and this week has been a lot of fun! A lot of her cheek and tummy swelling have gone down and she looks quite a bit more normal. The best thing though is that she has been her old self again – an extremely happy and fun baby! She laughs a lot now and plays with the kids all the time, she hangs out with me a lot while I work. It’s been really nice having her back instead of the Terrible Steroid Monster. She still can’t walk, but her legs are getting much better, she can scoot around and tries to stand often. Once or twice she has taken a couple steps – but that’s the most she can do so far. I think it’s very frustrating for her to not be able to get around on her own at all.

Holding her has become very similar to holding a long-haired dog in the spring time – you come away COVERED in hair! When you run your fingers through her hair you come away with a full handful. I suspect she’ll be bald by the end of next week and her body hair will probably follow soon thereafter.

During the last week, we’ve managed to take Serenity and all the other kids to the park each night to have a bit of fun. She really enjoys being in the baby swing and will sit there all night and just swing. Her blood counts are within the healthy range so we were able to take her to church today for the first time in over a month and she’s been able to go to a lot of public places lately as well – like the museum.

Tomorrow she starts her next chemo protocol, 6-Mercaptopurine or 6-MP, along with getting her bone marrow biopsy and intrathecal (in her spine) chemo treatments. Hopefully that won’t set back all the progress she’s made in the last week.

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