Posts from — July 2008

Yesterday’s blood drive was a success. The people at Twelve Horses are awesome. Not only did they allow us use of their office space, but they provided food, drinks, and a complete Rock Band set up.

We had quite a few people show up and so there was a steady stream of donors. It was fun to hang out and visit and even Serenity had a good time. I’d been afraid she would get bored being there for 5 hours but she really enjoyed it.

THANK YOU to everyone who blogged, twittered, and spread the word. We got 23 units of blood, which ARUP says can save up to 69 lives. I was very impressed with the number of first time donors that showed up, and people who’d had a bad experience donating in the past, and people who saw our signs and walked in off the street. There was even one wonderful girl who let them stick both arms trying to get a good vein.

We plan to do another one in October, in multiple locations. You might not think donating blood could be “fun” but it really was.

The Serenity Foundation’s first National Bloggers Blood Drive was a big, fun success!  We collected 23 units of blood which, by the numbers from ARUP, calculates to saving 69 lives - not bad for a quickly organized event! 

 I’ve uploaded the photos I took of several donors, they’re available on my Flickr Feed here.

Twelve Horses hosted the event for us and provided food and drinks (unfortunately we found out that RockStars are a no-no after you’ve donated blood - they bought a bunch of them for us and we couldn’t drink them!) they also let us have Rock Band setup so everyone could play during the 5 hours the blood drive was going on.  HUGE thanks to Twelve Horses!  If you need internet marketing done, drop them a line!

We had The Serenity Foundation’s mascot on hand for the whole blood drive, she had a lot of fun meeting everyone!

I’m feeling particularly drained from donating, so instead of reporting on the whole day, I’m going to just tell my story.  Check out the link to my Flickr feed for more pictures of donors.

This was the first time I’ve donated blood since I was a teenager.  I decided to organize the blood drive after my daughter, Serenity, received multiple life-saving blood transfusions while being treated for Leukemia.  As much as I hated doing it, I’m really glad that I was able to and I’m extremely grateful for all those that donate blood - both those that did today (many for the first time) and those that have donated in the past. 

I was really freaked out today about the whole donating thing, literally scared senseless about getting poked with a needle.  It’s amazing how such a tiny thing can cause such discomfort before it’s even inserted!  I put off donating until pretty much the last minute and it was with great trepidation that I filled out the forms and sat down.  Fortunately, Brad Baldwin came in to donate for his first time and I used his bravery to motivate me to get on with it.  Charlie Oliver also came in and became my “blood brother” as we were stuck and drained at pretty much the same time.  Here’s how freaked out I was (click the picture for a bigger image):

(and yes, I’m wearing a Captain Hammer shirt from Dr. Horrible!) Even once the needle was in, it was still a pretty intense time for me. 

So, for all those of you who thought I was tough or whatever, there’s proof that I’m a big sissy!  And for those of you who have told me that you’re too squemmish for needles/donating - hey, I did it and so can you!

Our next Blood Drive will be in early October (I’ll be announcing a date at the end of this week).  This time we only had Salt Lake going on, next time in Utah we’re planning on having Ogden, Salt Lake and Provo all going at the same time and hopefully Seattle, Phoenix, San Francisco, New York and many other cities all going at the same time.  If we managed to save 69 lives this time, just think how many lives we’ll be able to save if you help us spread the word!  If you have already installed the widget on your blog, please leave it there, the banner will update with the next date as soon as we have it set - if you don’t have it installed yet, please consider installing it!

Blogging for good and saving lives, quite a concept!

#TSFBlood

Be a Hero, Save a Life, Donate Blood!

This is a reminder about the National Bloggers Blood Drive today. If you’re in Utah please come join us at Twelve Horses in Draper any time from 3 - 8 pm today. There will be movies, games, snacks and a couple prize drawings, not to mention you will be hanging out with lots of cool people!

Twelve Horses is located at 13961 South Minuteman Drive, Suite 125 in Draper. Take the Bangerter exit off I-15, head east and turn south on MinuteMan Drive, the building is on the east side.

Be a Hero, Save a Life, Donate Blood!

This is just an RSS reminder about the National Bloggers Blood Drive today, if you’re in Utah please come join us at Twelve Horses in Draper any time from 3 - 8 pm today.  There will be movies, games, snacks and a couple prize drawings along with hanging out with lots of cool people!

Twelve Horses is located at 13961 South Minuteman Drive, Suite 125 in Draper.  Take the Bangerter exit off I-15, head east and turn south on MinuteMan Drive, the building is on the east side.

For more details, see my previous post here.

Remember to tag flickr, twitter and blog posts with TSFBlood so it’ll show up on the NBBD Aggregator!

Serenity got a purple cast today.

We took her in Friday but her wrist was too swollen to cast. We didn’t expect that. It wasn’t swollen on Wednesday when it happened and we hadn’t unwrapped the temporary cast that Insta-Care had given her. According to our pediatrician it can take 3-4 days for it to swell.

So this morning we took her in and she loves that it’s so colorful.

The twins also had physicals this morning. They are healthy and growing well. We asked for the lab to run a blood panel on both of them, just in case. We haven’t got the results back but I think if something was amiss we’d have heard.

Taking the 3 kiddos (3 and under) to the doctor at once was an adventure. Phil and I both were there and spent our time chasing babies and answering questions and trying to distract little ones and rolling our eyes at how hard it is to keep 3 little ones contained in the same room when they’re tired of the toys and they don’t want to be there.

On Wednesday is our blood drive in Serenity’s honor, and on Thursday we go back to the oncology clinic to start interim maintenance. Other than that not a lot is going on. Our oldest is watching 4 kids this week so they came over here today and our kids loved having playmates. When they were all in the van I thought to myself, “This is what it would be like to have 10 kids.” (Two of ours are staying with family members for the summer.) By the end of the day I was feeling a little frazzled so Phil gave me a break for some mommy time. It’s not often that I choose to spend my mommy time tidying up the house, but it desperately needed it.

It’s almost time for The Serenity Foundation’s first quarterly National Bloggers Blood Drive! 

The goal of the NBBD is to hold local blood drives in multiple locations around the world that occur at the same time allowing live tweeting/flickring and blogging to go on.  This being the first event and being planned with very little lead time and especially that it comes at a time when I’m completely swamped - it won’t be quite a representation of what I’m hoping the next one will be.  Hopefully this Wednesday’s event will be enough to really get the conversation started about the NBBD and the next one will have more locations. 

If you’re interested in hosting a local blood drive in your area next quarter, let us know - the next one will be in October. 

For now, if you live in Utah, please join us on Wednesday (July 30th, 2008) at Twelve Horses between 3 and 8 pm!  There will be a couple raffle giveaways, food, drink and movies for all.  Hope to see you there!

Twelve Horses is located at 13961 South Minuteman Drive, Suite 125 in Draper.  Take the Bangerter exit off I-15, head east and turn south on MinuteMan Drive, the building is on the east side.

We have a Facebook group here and any blog, flickr or twitter entry with the term: TSFBlood is automatically aggregated on the Blood blog here.  We also have a widget/plugin you can use to help advertise the blood drive here.

Vicki asked about the dress that Serenity wore to her last clinic visit. You can see another photo of it here. It is from Tea, a children’s clothing line. I was fortunate to find both a dress and a tunic in size 2 and… I ABSOLUTELY LOVE THEM.

Not only are they incredibly cute but they snap up the front, kimono style. This means that we can access her port by undoing a couple of snaps, instead of taking her shirt or dress all the way off like we have done in the past. (Taking her shirt off has become a huge deal and it is very upsetting for her.) I even like that they are sleeveless, because when her port is accessed, we can run the line out through the shoulder and it’s easily accessible and not in her way.

Have I mentioned how much I love these clothes?

Now that we are nearing the end of summer they are going on sale around the Internet, but I’ve had a heckuva time finding them in a size 2. If you know of somewhere that sells them, please let me know. I would love to get a couple more.

Serenity is doing pretty well. This is her week off of chemo and she has been feeling great. Her eyes bother her a little - we are not sure why - and she still waddles a little bit but her walk is getting better every day. I overheard one of the kids ask her the other day, “Serenity? Did you ever know how to run?” It was cute, and bittersweet. I hope that she will be off and running again before too long.

Her next phase - Interim Maintenance - will last for 50 days. We will have clinic visits every ten days, rather than once a week. I know there will be IV chemotherapy at those visits. I don’t yet know what all she will have to take at home. Since we are switching chemo meds again I think there is a strong chance she will have to deal with awful side effects again. But, I hope not.

Today one of the kids set her up on an occasional table (that’s the name of it ) that we have in the front room. And she fell off. I didn’t see it happen, but got the report when she started crying. She must have landed on her wrist funny because she complained about it throughout the day. It wasn’t swollen, and she could use it, but she continued to cry about it.

We decided it ought to be seen, so Phil took her in to Insta-Care where they x-rayed it and it is fractured. The doctor put a temporary cast on it and we will try to get in to the pediatrician in the next day or two to have it casted. My poor girl. She is having a rough time of it. With one arm in a cast she can’t roll over or even stand up very well from a sitting position. And she is in some pain still.

Phil blogged about The Serenity Foundation’s National Blogger Blood Drive (say that 5 times fast!) but I wanted to write about it as well.

Serenity received many, many blood transfusions in the early weeks of her battle with ALL. It was almost miraculous to witness how much better she would feel after receiving someone else’s blood over the course of 3 hours. While I have always had an appreciation for blood donation, seeing it save my daughter’s life & restore her vitality really brought home the importance of this.

On July 30, we will be sponsoring a blood drive in Draper, Utah. It goes from 3 pm to 8 pm and there will be food (I think), movies, and really awesome company. PLEASE if you are able, come donate blood. Here is a list of donor requirements. If you can’t donate blood I hope that you will still stop by to say hi and show your support of those of us with needles sticking out of our arms.

ARUP is the sole provider of blood to Primary Children’s Medical Center, where Serenity is treated.

They are holding several promotion this summer, so when you donate blood you could win a free car or a $50 gas card. (Someone from our group will win a gas card.)

The location of the blood drive is Twelve Horses. They are located at 13961 South Minuteman Drive, Suite 125, Draper, Utah. According to MapQuest, if you are coming from the south take the 14600 SO./UT-140 exit, EXIT 288. Turn right onto Highland Drive and left onto Minuteman Drive.

Please help us spread the word by blogging about this, or promote it on Digg, Stumble, or Twitter. Tag your entries #tsfblood. We would love to have a great turnout.

If you are not nearby but would like to organize a blood drive in your area, please let us know how we can help.

Tuesday night Serenity seemed to be in a lot of pain. She was crying and hysterical but wouldn’t tell me what was wrong. I think it was her legs hurting but I still am not positive. Finally, we gave her some oxycodone and she quickly drifted off to sleep.

Wednesday morning we had another clinic visit. She was a little crabby all morning. We had to be in Salt Lake at 8:30 a.m…..no easy feat! But we made it only ten minutes late.

There is always a little craft for her to work on while we are waiting for our turn to be seen.

We saw a doctor and a nurse practitioner we hadn’t seen before. I really liked the nurse practitioner. Serenity has been complaining about her eyes a lot. Again, I don’t know whether they itch, or hurt, or what. They haven’t been red and she can still see, but they occasionally water and she rubs them a lot. The nurse practitioner prescribed some liquid Claritin in case it’s allergies. I have really bad seasonal allergies but I don’t think that it’s that (because of the lack of redness, mostly).

Serenity was accessed via her port, like always. She screamed to high heaven, like always. It was over fairly quickly, thank goodness. They drew blood and everything came back fine. We took her down for another lumbar puncture. It took her a very long time to wake up. Maybe she was making up for last time. But she did wake up finally and it didn’t take her too long to get back to her old sweet self.

The dr told us that our next phase, Interim Maintenance, will be a little different than we had expected. The Children’s Oncology Group recently changed their recommendation so instead of oral methotrexate, they will give it intravenously. I confess I’m relieved. We have a hard enough time getting her to take her medicine. Also a friend of ours has a child with ALL and his oral chemo has really done a number on his mouth. He went nearly a week without eating anything because it was so painful. So although it means more trips up to Primary Children’s, and more gas money and time, I am glad we will be doing the chemotherapy intravenously. Apparently this is how they used to do it, then they switched to oral delivery, but about a month ago switched back after concluding that delivering intravenously lessened the risk of relapse.

So we are finishing up this Consolidation stage, then she gets a week off from clinic visits, and then we move to Interim Maintenance and I think our visits come every 10 days, rather than once a week. We are making progress!

Serenity: Daddy?

Me: Daddy is working.

Serenity: Bye bye?

Me: Yes, Daddy went bye bye to a meeting. He will snuggle you when he comes home.

Serenity: HOLD ME?!

Me: Yes, when he comes home he will hold you.

Serenity, giggling: Daddy HOLD ME!!!!

Accompanied by a huge grin.

Serenity received a gift in the mail.

Needless to say, she was thrilled.

Serenity’s Amazon Wish List does not appear to be updating, so if you’ve bought her a gift and are wondering why it’s still showing up on her site, that’s why.

I’m really excited about this and I think it’s going to be REALLY cool! 

July 30th will be the first quarterly National Bloggers Blood Drive, this is a new project we’re organizing at The Serenity Foundation. 

As I mentioned in my previous post, I’ve been working on organizing a new twist on blood drives and blogger/twitter meetups.  It turns out that someone else recently did something similar in Austin, TX.  Michelle Greer just hosted a blood drive Tweetup in honor of her sister who has ALL (the same Leukemia that Serenity has).  They had a great response and turnout and I hope that we will as well! 

The big idea here is to make this a national, or even global, effort.  Bloggers around the world unite to save lives!  We’ve already had people volunteer to host local blood drives in 2 other locations: KirstenP wants to host one in Seattle and Michele is working to put one together in Chandler, AZ!  If you’re in either of those locations and want to help out, I’ll connect you with Kirsten and Michele.  If you would like to put one together in your location, let me know and we’ll help you with organization as much as we can. 

The goal is to use social networking, web 2.0 and all these new shiny things to really make a difference!  We’ll post stats about how much blood we collectively donated in one afternoon - and how many lives that blood will be able to save.  During the blood drive people will hopefully be blogging and tweeting the experience, sharing photos of the different locations, registering with Takes All Types, etc.  We should be able to make donating blood into a fun, cool, social experience.

Here’s the key to making this all work - every tweet, blog post, digg entry, stumble review, etc needs to be tagged with a common id.  I’ll be setting up aggregators that will scour the social web looking for entries that are tagged exactly like this: #tsfblood 

TSF is for The Serenity Foundation which is the new legacy project for Serenity.  The aggregators will be set up on the Serenity foundation’s website which is still being built but is at: http://www.TheSerenityFoundation.org once the site is finished all the updates and info about the blood drive and other projects will come from there. 

So that’s all the background info, here’s the info about the Utah drive. 

 July 30th, 2008 from 3pm to 8pm MST at Twelve Horses, 13961 Minuteman Dr. Suite 125.  We’re very grateful to 12 Horses for allowing us to use their offices and their wifi.

ARUP has some pretty cool stuff going on!  Everyone who donates blood at the Utah location (twelve horses) will be entered into two raffles - one is a raffle to win a car (2 year lease free) from Ken Garff Mitsubishi, this raffle goes on all summer and the winner will be drawn after September 12th.  The other raffle is for a $50 gas card at Maverick and will be just for our event - one of the people who donate with us will win the card!  In addition to that we’ll be serving food and watching movies during the event.  If you or your company are interested in sponsoring food purchases, please let me know and we’ll make sure you get plenty of coverage at the drive. 

And here’s the call to action:

Help spread the word!  Please Digg, Stumble, ReTweet and Reddit this post, invite all your friends to the Facebook event page, blog about it, post the plug-in or banner ad where-ever you can, install the soon to come facebook app or just mark your calendar and be a participant!  We should be able to get a great turnout and make a huge dent in the current blood shortage - and make a big difference in a lot of people’s lives!

Click here for all the info including the WordPress Plugin and banner ads for the event.

#TSFBlood

What do a two year old girl and a stuffed horse have in common? Both got their “ports” accessed at the clinic today. (The horse was a much easier patient.)

Serenity had her weekly visit today at the oncology clinic at Primary Children’s Hospital. Rachelle is an awesome girl at the hospital - a Child Life specialist - and each week when we visit she spends some time playing with and talking to Serenity. Today she noticed that Serenity was carrying her stuffed horse. So Rachelle took Horse through the same process Serenity goes through at each visit. First Horse got an ID band around her leg. Then Horse got her port accessed. First we cleaned her chest in 3 different steps, and then we turned on a movie for Horse and she sat very still while Rachelle put the needle into Horse’s chest. Then she taped the needle in place and Phil carefully pretended to give Horse her IV medicine. Horse watched the movie part of the time, and sometimes she watched the IV. Then Rachelle went through the steps of taking of Horse’s chest bandage off and taking the needle out. When it was all done she praised Horse for holding so still and being such a brave patient.

Then it was Serenity’s turn.

It doesn’t get any easier, even though we’ve been doing this regularly now. We hold Serenity down and talk to her to try and soothe her while the nurse cleans her chest and places the needle. Serenity screams bloody murder the entire time, begging us to stop. It breaks my heart. We numb her chest ahead of time, so I think it is fear more than pain, and somehow that makes it even harder to watch.

Once the line is placed and her clothes are back in place, she does calm down quickly. Today she had a blood draw and then we were off to the Rapid Treatment Unit for another lumbar puncture.

Normally it takes 30 minutes or more before she wakes up and they bring us into the recovery room. Today Phil had an errand to run and I went to talk to someone in the billing department. 10 minutes later I was heading back to the RTU when I heard a page for Serenity’s parents. My heart sank to my stomach. As it turned out, she had awakened very quickly and when we weren’t there she was frantic. I raced back to recovery and she was yelling Mommy! in such a sad angry voice that it hurt my heart. I was able to calm her quickly and settle her down and within a few minutes she was sitting up and smiling again.

Serenity turned two on Sunday and we had a little party for her at Phil’s parents’ house Monday night.  She loves to tell us, “I two!” 

We are still having the hardest time getting her to take her oral medication.  Her side effects have been very minimal this month and so she is taking way less medicine than she was last month.  But she is fighting it fiercely.  We end up dosing her two or three times because she spits so much of it out immediately.  I keep hoping that she will adapt and this will get easier, because we’ll be doing this for 2 1/2 years.  But so far it’s getting harder, not easier.

Thanks to everyone for your well wishes and support.  We really feel blessed and supported by all our friends, including the ones we’ve never met.

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.

The first week of consolidation has been easier than induction was. Monday Serenity’s numbers were good and she didn’t need any transfusions. She went under general anesthesia for a lumbar puncture and they put chemotherapy into her spinal fluid. She took a little bit longer than normal to wake up and get back to normal but before long she was feeling pretty good. She is such a happy girl.

We also started her on a new oral chemotherapy medication on Monday, 6MP. She took hardly anything last week, and getting her to take meds again has been a real challenge. She is spitting everything out! We have tried all the tricks. We flavor it, we put it in a syringe, we hold her down, and no matter how well we orchestrate it, she has managed to spit almost everything out (and most of it into Phil’s face!). I have been really worried because it’s so important that she get this medicine, and very important that the dosing is accurate.

Today was a success because Phil added it to an egg he was cooking & she ate the whole egg without complaint. BUT the medicine is supposed to be taken on an empty stomach, and we don’t know if it can be heated like that. So tomorrow we’ll try it with grape flavoring, and hope that it does the trick. (As a result of Serenity getting leukemia, I’ve made a wonderful & thoughtful new friend - nearby even! - who not only brought us dinner Monday night but also gave me some grape flavoring to try. So there are a few silver linings.)

Serenity has been shedding like crazy the past week or two, but between Monday and Wednesday she lost more than half of her hair. I was hoping to hold off on shaving her head until we got our family photos done this weekend, but by Wednesday I conceded that she was looking pretty raggedy and was probably worse off than if we just shaved it. So we did, and I struggled not to cry. She is adorable, but she looks so sick now. And she always had such beautiful long hair for her age.

This was taken in April:

(Yes, ignore the straps of her carseat please.  She’s a little Houdini.)

In May, in the hospital:

And yesterday, at Ikea:

(The sticker on her head was her idea.  She loves her bald head.)