Category: General

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.

This is Day 4 of Serenity, my baby, being diagnosed with and treated for Leukemia.  Day 3 is here.

Today started out peacefully, Serenity slept in pretty late – much needed sleep! 

Due to the incredible outpouring of generosity by friends and community online, the ChipIn widget earned over $1,000.00 in less than 24 hours!  Once Serenity woke up, she sat around for a while, picked at her food and glanced at the TV.  Now that she is being more active, we suddenly realized that we don’t have much for her to do here!  We discussed the appropriate use of the donated money and decided that since most of her visitors have brought her something, we would consider some of the donations to be virtual visits.  I headed to the store and bought several new toys that she could play with while on her bed (it really hurts her to stand-up due to her treatments).  While I was gone, Adria got her ready for the day so that when I returned, she was sitting up ready to play. 

 I bought some of her favorite things to play with at home and she really had a blast with them!

As is typical now, after a little while playing she quickly became very worn out and was ready for a nap.

 In the afternoon, all of her siblings showed up for a quick visit:

Her big sister, Talysa, jumped up on the bed and hung out with her for quite a while.  Gibson helped organize her toys and gave her stuff to do with Talysa.

The twins, Indigo and Taran, also hung out for a while.

A little later her big brothers, Kaniho and Sarek, showed up for a while (all the kids are split up, staying with different relatives in different cities).

She also got to visit with both of her grandparents (Adria’s mom died of cancer about 8 years ago), some people from our neighborhood, and some other family friends.  While Kaniho and Sarek were here, she was getting a blood transfusion.

After they left, Serenity started having a bad allergic reaction to the new blood (this is frequently the case).  She very rapidly developed a rash that covered a large portion of her body in about 15 minutes and had to have Benadryll again to combat it. 

(click the picture to view a much larger version)

The Benadryll worked great to knock down the allergic reaction but it made her very tired again.  In fact, she got the Benadryll around 7:00 and has been sleeping ever since.  We’re still learning how to classify her day for her, but we think this was a fair day.

Tomorrow we’ll be announcing a project that several volunteers have been working on.  It’s a full fledged donation site that will very soon have a bank account behind it and an EIN so people can get a tax deduction from donating.  The site isn’t finished yet, but it’s coming together very nicely.  If you want a sneak-peek, you can see it at http://liftingupserenity.com/ I would like to quickly share the story behind the name of the site.  On Sunday morning, just before her surgery, the Hospital Chaplain came by and asked us if we would like her to say a prayer for Serenity.  We happily accepted and during the prayer, she said something that really stuck with us.  She said, “Lord, please lift up Serenity in your arms while she is in surgery” (or something to that effect, unfortunately we can’t remember it verbatim).  Adria’s friend, Amanda, was in the room with us and we all commented that that line in her prayer was particularly beautiful and we decided that her support site should be called Lifting Up Serenity.  Once it is active, that site will become the primary support and reporting site for Serenity’s battle with cancer. 

While I’m sharing name origins, I’d like to share the origin of Serenity’s name and how she is living up to it.

Adria’s water broke on Monday, July 3rd.  We were originally going to name her Xion.  Since it looked like she might be born on July 4th, we decided we would instead name her Liberty.  Well, she wasn’t born until Friday, July 7th.  By that point, we were in full baby naming mode again and thought about the Serenity Prayer.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

We particularly had in mind the line about accepting the things I cannot change, in this case, as it referred to our baby being born.  We chose the name Serenity for her based on that line and on the name of the prayer.  There may have been (definately was) some influence on me to go with that name given that I love the Firefly series and the subsequent movie “Serenity”.  Now she is living up to both of those sources of her name, fighting cancer definately calls for the serenity to accept things that cannot be changed.  Likewise, the ship Serenity was a brilliant design capable of getting herself out of many a dangerous scrape.  She also kept getting beat up and knocked around, but always came back fighting like mad, just like my baby. 

Please forgive the randomness of the last part of this post, but I was thinking about her name quite a bit today and how she is really living up to it.  Serenity – Go, Fight, WIN!!!

A friend and old business partner, Jesse Stay, has put together a ChipIn Widget that will let those who have been asking how to donate money for Serenity do just that.  He has all the details on his blog here.  As I mentioned in my prevoius post, he and a few other people are also working on a site and an account to make donating money very easy. 

Our family is very grateful to those who are thinking about our finances and those who are willing to help out.  Expenses haven’t really piled on yet, but I’m sure that it is going to be completely overwhelming when it does – I’m just not thinking about it until we get out of the hospital.  I’ll also add the widget to this blog to make it easy to find. 

We are very thankful and feel very blessed for the support of family, friends and especially the community (I can’t tell you how many notes I’ve received from people we don’t know) during this trial.  May God bless every one of you.

This is Day 3 of my daughter, Serenity, being treated for Leukemia.  Day 2 is here. 

Today has been a very long, very stressful and very upbeat day! 

The day started with surgery prep.  Her platelletes were low again, too low to do surgery, so they gave her another bag.  Then there were several drugs that she needed to take beforehand.  A couple hours later, the surgeons came and got her.  They took her down on her bed to the operating room.  The anesthesiologist met us and gave her some drugs in her IV to begin sedation.  After that we were able to hold her for a bit and kiss her goodbye.  Then we handed her to the surgeon and they took her in.

This whole experience has been a multi-faceted learning experience for me and for Adria.  Most of all, we’re learning about cancer and blood.  But, we’re also learning a lot about ourselves.  We’ve been very blessed with 8 children who, up until now, have been completely healthy.  We have never had a child spend the night in the hospital (other than at birth) and we’ve never had a child need surgery or really any kind of risky medical procedure.  So this was the first time I’ve ever had to hand my child over to someone so they could go cut her open and do stuff to her. 

I learned that I don’t really handle it very well.  I was extremely stressed about it, I couldn’t sit in the waiting room for more than one minute before I was feeling like I was going to go crazy.  Our good friend Amanda was here with us as well as Adria’s sister, Tara.  I told Adria I had to leave.  I got up and went and wandered the hospital for a bit, kind of in a daze.  Then I thought about that when Adria is stressed she likes to eat certain candy – we didn’t have any of that here.  So I finally had a mission, something I could focus on and not imagine the horrific things they were doing to my baby.  I got in my truck and headed to the store where I tracked down Adria’s 3 favorite comfort foods (peanut butter M&Ms, sugar babies and Granny B’s Pink cookies if you were wondering).  I actually had to go to 3 stores to find everything.  I had just gotten the last of it when Tara texted me and said the surgeon had just come in and it would be about 30 minutes more.  Perfect.  I headed back to the hospital with treats in hand.  About 5 minutes after I got back, the Oncologist came out and told us they were done and that everything went excellent. 

It was about 20 minutes later that they came and said she was awake in the Recovery Room and that Adria and I could go in to her.  We walked in and she was crying.  I picked her up and held her for a while.  She was coughing up a lot of flem and they told us that they had had to intubate her and put her on the breather twice due to her lungs still having a bit of pneumonia in them.  They gave me a suction tube and had me suction her out when she coughed stuff up.  It was very good to be back with her. 

Once things were stable, we headed back to her room.  The nurse immediately gave her a once over and checked everything out on her. 

Then she slept for a while.  She had gotten her first Chemo treatment which meant that there were now drugs that she had to take orally that weren’t an option.  The Nurse schooled us on how to affirmitively work with Cancer Kids on taking their meds.  They have to learn that there isn’t an option and it doesn’t matter if they don’t like it – they just HAVE to take it.  Cancer Kids definately have to have a different lifestyle than the rest of us are used to.  After sleeping for a few hours, she woke up again and was in a pretty good mood.

That lasted for about 15 minutes and then she was worn out again.  But it was really fun to have some of the old super happy, super excited about life her back again!  She and I laid down on the bed and slept for about 5 hours – we were both exhausted.  After that catnap, she woke up and her appetite was back!  She hadn’t eaten solid food for about 4 days and she started asking for everything!

We gave her a sponge bath and got her set up sitting on Adria’s lap to have a great meal of cherios, yogurt, gatorade, bananas and ice cream.  She was one happy kid while she chowed down and watched a movie! 

After about an hour of eating, she was kind of tired.  Then my brother came over with Serenity’s one year old cousin and they played for a while on the bed.  She wasn’t too interactive though as she was ready for bed.  After they left, she laid down with Adria and has been sleeping for several hours.

Now it’s really late and it has taken me all day to get this post put together.  There continues to be lots of support and love pouring in and I want to thank everyone for that again.  I’m way behind on personal responses – it might be a while before I get through them all, but I want everyone who has sent personal notes and donations to know that we are extremely grateful and very moved by the showing of love that we’ve received. 

Several people have contacted us asking if there is a ’support Serenity’ site or account being created.  There is.  Some other people are heading it up and I’m told it should be ready by Tuesday.  I don’t know a lot of the details on it, but for those asking, we’ll have that soon.  I’m especially moved by the offers of donations.  It was something that never occurred to me would happen, but several people have pointed out that this is going to cost a ton of money – another thing I’m not even thinking about.  It’s interesting how you can stress about money and then when something like this happens that is probably going to cost more than our house – money isn’t what you stress or think about – you just do it.  So to those thinking about it for us – thank you!  I’m sure that once we get home and back to the real world that will become a much higher priority for us. 

We have to be here in the hospital for 7 days starting today.  They have to closely monitor her while they get her started on treatment and refine the protocol they are going to use.  After that it will be weekly, then monthly visits for more than two years.  We’re honestly looking forward to all those treatments – it means we’ll have our little girl with us that long and hopefully get cured and she can go on to live a full life.