Author: Phil

 This is Day 9 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 7 is here.

It has been a whirlwind week.  While it was only seven days it feels like we were there for months – a lifetime even.  In some ways it’s good we spent a full week at the hospital, it was long enough that everything prior to it is kind of a blur in our minds.  In the last week we became well trained in the ways of Oncology, Blood Chemistry and Nursing.  We now speak a different language, not quite fluently – that will come – and we are now able to do things we’ve never tried before.  Things like creating and working in a sterile field, flushing a Port Catheter, extensive drug preparation, drug protocol management and on and on.  These things have now become commonplace for us and we realized how alien they used to be when our 17 year old daughter was trying to follow and understand what we were saying and doing. 

In short, we are now Cancer Parents.  We have new priorities, new stresses, new tasks and lots of new rules.  Most of all, lots of the old things that were stressful just aren’t critical anymore.  What matters most now is keeping our baby alive and helping her get cured.  It’s interesting the way life changes and we adapt.  Having a child with cancer is hard, but it’s worlds better than not having that child!

It hasn’t been easy being home.  Serenity’s Oncologist noted that we seemed very apprehensive when we were checking out of the hospital.  We explained that the reason for it was that we were leaving the constant care and safe haven of the hospital and we were feeling the burden come on our shoulders to keep our baby safe and healthy.  As parents of eight children, we’re seasoned pros at raising babies but this is something completely new and frankly extremely scary.

Once we left the hospital it was like we were entering the world for the first time.  Everything seemed different yet nobody realized it but us.  It’s like we’re living on the same world as everyone else but we’re on a slightly different plane.  I think we now live in a parallel universe with other cancer and crisis families.  Families like my cousin Corrie , our dear friend Amanda, or @tmartini on twitter – families that live with kids in crisis.  I suspect they see the world in the way that we are now viewing it – and we are looking to them for guidance on how to navigate it. 

In the last week I came to look at much of the web 2.0 technology that I’ve become accustomed to in a very different way.  I’m now thinking about and exploring ways to use that technology to help families with kids in crisis.  I’ve mentioned before that we are working on creating The Serenity Foundation to help families who find themselves in medical crisis with their children.  At first our thoughts were mostly around money and while that remains a big part of what we want to do, we found that it was extremely vital to us to be connected to friends, family and community through the internet.  With help from friends, we were able to rapidly create a central point of information about our situation and, most importantly, not have to field 100 phone calls a day explaining what was going on and constantly reliving the emotional turmoil.  The emotional, financial and motivational support we received initially and continually throughout the week from our online communities REALLY helped us to soldier on.  We want to find and create ways to help other families find that connection when they are in a similar situation.  I’ll be talking more on that later.  For now, if you are interested in volunteering to help create a centralized social networking solution, please let me know. 

Now for more of an update on Serenity.  We got home on Friday and spent most of the day setting up a sort of nursery in the Living Room.  Serenity can’t walk right now, her legs won’t support her weight and they are in pain from the Leukemia and chemo.  We didn’t want her isolated from the family so we purchased (with her donated funds) a new twin bed to be the center piece of the Living Room and set up places for her toys and entertainment.  We moved the TV into the Living Room along with several couches and set up several storage locations for all her medical supplies.  Now she has a small living area in the central part of the house – she won’t be isolated in a bedroom which would lead the other children to feel they were abandoned when we were tending to her.  Her bed is off limits to the younger children so she can be safe, otherwise her 3 year old twin siblings would surely be jumping on the bed and doing other things that could lead to her being hurt. 

Once we had the room set up, we were exhausted – and she was nauseous.  She threw up several times, which continued into today.  We had a long night without much sleep.  This morning the home healthcare nurse came by and went over their services with us and made sure we knew how to flush her port.  We then headed out to pick up more drugs for her (she and Adria stayed in the car while I ran in).  After that, the other kids came home (except for Kaniho and Sarek who are having too much fun staying with my brother) and we explained several new rules to them – which were promptly broken and repeatedly reinforced. 

It was very nice to have most of the family together again!  However, we once again realized that one week in the hospital was a lifetime.  The sheer noise level increase and utilization of child energy was a little overwhelming!  We’ll get used to it quickly, but it was very different then just having mostly silent (in comparison) Serenity with us.  We are very grateful that we have a very responsible 17 year old daughter, she offered to babysit so that Adria and I could have our first break in over two weeks.  We went to see the new Indiana Jones movie and hurried home.  We gave Serenity her late night drugs, which caused her to throw-up again, and settled everyone in bed. 

I was too tired to post last night, and I’m half dozing while I write this.  Hopefully tomorrow will be a little more calm after church (I’m taking the other kids while Serenity and Adria stay home) and we can get some good napping in!  I also hope to catch up on responding to all the email, blog posts and other well wishes from the last week – if I haven’t gotten to yours yet, I apologize – things are still a bit crazy, but we’re very grateful for everything we’ve received!

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.

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!!!