Category: General

This is day 23 of my baby, Serenity being diagnosed with and treated for Leukemia.  Day 19 is here.

A lot of the time, Serenity looks like this:

A lot of the time, she also looks like this, often just seconds after looking the way she did above:

I’m not sure what set her off in this case, it may have been finding out she has to take meds soon, it may have been that she was in pain, it may have been that someone touched her bed or anything else.  Steroids and a 2 year old that doesn’t quite talk can be an interesting combination, anything will set her off.  As if being 2 isn’t hard enough, she’s got Leukemia and everything that goes with it piled on top – and it makes for a tiring combination as a parent.

Saturday night her zofran (anti-nausea meds) and her steroids met up in just the right combination and she went on an eating binge!  Literally about every 30 minutes she would wake me up and place her food order – eggs, yogurt, chips, popcorn, cheese, cereal, tortilla with peanut butter, bread with ranch – whatever she was craving at the moment.  She ate about half a dozen eggs, 3 cups of yogurt, and tons of chips, popcorn and everything else listed up there, she put me to shame in the eating department!  It then carried on through most of the day today although not quite as intensely. 

After spending a full week in the hospital, then being stuck in the house for 2 weeks with only going to the clinic, we’ve had on onset of Cabin Fever.  Earlier in the week we started venturing out to the back yard to swing.  Then on Friday we decided to have Talysa babysit the other kids while Adria, Serenity and I went to a 12:30 showing of the new Narnia movie.  We knew that since it had been out for a few weeks and it was the middle of the day that the theatre would be mostly empty.  We decided that if we sat in an isolated section of the theatre Serenity should be ok without her mask on – but she had to wear it into the mall and theatre in case anyone got close to her.

She had quite a bit of fun hanging out with Mom and Dad and is probably the only 2 year old that will sit quietly through a movie.  On Saturday we took the whole family to the Orem Summerfest which is basically a big carnival.  She was able to have a lot of fun hanging out without her mask on, I wanted to enter her into a hot dog eating contest – she would have killed her age group 🙂 While we were walking through the booths at the fair section, all the sudden she started freaking out and screaming something we couldn’t understand.  At first we thought she was hurt so we took her out of the backpack – but then she started pointing behind us and screaming, so we backtracked.  We went one both back where a guy was standing there innocently eating chips from a bag.  She pointed right at him and screamed what we now understood to be “Chips!”.  We actually had some in our day bag and got them out for her – but that guy is LUCKY that she can’t walk!

We normally use the Kelty backpack for hiking in the mountains, but this time it came in really handy in a different situation.  On a side note, if you have a toddler, I highly recommend the Kelty line of kid packs – they’re awesome and we love them!  Serenity also got to ride on the carousel – it was the only ride she could go on since all the other ones required her to sit down.

She got a bit tired of it towards the end, and so did I!  So, in contrast to last weekend, which totally sucked, this weekend was a lot more fun, and a lot more normal with being able to get outside and do stuff with the family.  Normal now means lots of new rules though. 

Staying on the fun side of things, while we were at the hospital we were given a list titled “You know you’re the parent of a Cancer Kid when…(1-100)”.  A lot of these won’t make sense to most readers – which is actually number 45 “You don’t have to ask ‘what’s that mean’ to the previous 44 items”.  But for the cancer parents reading, I wanted to list out the ones that already apply to us and for eveyone else, give a glimpse of what’s different for us.

1. You carry a tube of Emla in your purse instead of lipstick.  (We actually carry almost an EMT’s med kit )

3. You can sleep anywhere, and anything that reclines more than 15 degrees looks “comfy”

15. Your child asks whats for dinner and you are relieved you don’t have to administer anti-nausea meds

16. Your 2 year old knows where all the medical equipment goes, and how to use it.

17. Your childs first word is a medical term. (Serenity uses several words, and now at least 5 are medical – including ‘port’)

18. You keep a bag packed at all times like you’re 9 1/2 months pregnant.

19. You can eat with one hand while you hold the barf bucket with the other.

20. Your childs bedroom looks like a Toys R Us store.

24. You know medical terminology better than your family practitioner. (for us, it was the ER doc)

29. You have a syringe in your purse (diaper bag) and you’re not diabetic. (I had one in my pocket the other day for some reason)

30. You have more meds in your cupboard than food.  (we have a whole cupboard JUST for meds and equipment)

31. You can read your kids chart better than the nurse.

33. You and your wife get matching stress tattoos.  (I’m working on this one actually)

34. You are teaching your daughter parts of her body and when you point to her chest she says “port”.

57. When the siblings want to know what the child’s counts are so they know whether they can go inside and eat at McDonalds.

58. When your kid asks for a Happy Meal, you immediately turn around and start heading to McDonalds as fast as you can, before the craving wears off (and if they’re on steroids, ask “A Happy Meal or a Super Sized one?”).

79. When you can whip up a 7 course meal in minutes for a child having a steroid pig out – and you’re happy about it!

82. You are totally comfortable in an examination room and don’t think twice about getting items out of the supply drawers.

84. When its time for your 2 year old to have her vitals taken and she lifts her arm and extends her finger without being told, or complaining – all without looking away from her movie.

87. When you have a collection of barf buckets in every room of the house.

91. When you think of anything your child will eat and keep down as a “nutritious meal”, even if it’s cookies and candy.

100. Your child has her own website to keep friends and family updated.

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

 This is Day 19 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 17 is here.

 My last post came from the depths of the bottom of the emotional well.  I had landed there with a huge thud and was experiencing emotional pain that was entirely new for me.  The responses to that post in comments, in email, in person has been an overwhelming outpouring of support and reassurance.  I know from personal experience that comments aren’t always read through so I want to repost one of my comments on that post.

OK, I’m doing MUCH better – I pretty much had a breakdown last night in which I was just feeling sorry for myself and not thinking logically.

Thanks to those of you who commented with words of support and reassurance, I appreciate it. I do know that what I do is valuable and I do see the connections for what I do in helping doctors etc. Thanks to those of you who also see that and pointed it out.

It was an anguishing night for me last night and I probably shouldn’t have blogged what I was feeling/thinking, but I committed myself to recording as much as I could about this process and what we were going through. Several people have commented saying that they appreciate our openess into our experience and for sharing raw emotion.

Today I’m back at it, but I have even more detailed plans of how to use my skills and knowledge to better serve the Cancer community. I’m actually pretty excited about a lot of it. I’ll be sharing more on that soon.

Thanks again everyone.

This whole process is a scary, emotional journey and I want to share it, it’s mostly for me – it helps me a lot to work through things here, to share things and get my feelings off my chest.  But it’s also for those who will come down this path after us, I hope that in the future other cancer parents will find these posts and will be able to find some comfort and understanding for what they’re going through, as Adria and I have found on other blogs from cancer parents.  It’s also for those of you who haven’t experienced being cancer parents – hopefully by sharing in our journey you’re able to feel a little more blessed in your own lives that you haven’t had to deal with this.   I am very thankful for the supportive comments, email and other communication that came from the previous and other posts, I’m more able to deal with this because of all of you. 

Today I had a great conversation with a fantastic Lady whose daughter had retinal cancer (I can’t remember the name of the cancer).  Her daughter had to have her eyeball removed when she was a baby, she is now almost a teenager.  We shared stories of dealing with initial discovery, the emotions that occur and reactions to them.  We also discussed ‘owning’ your cancer (or in our case, owning your baby’s cancer).  She has totally owned her child’s cancer – on her desk she has several eyeballs, I think they were created to be Halloween decorations, but for her they are symbols of her baby’s challenges and triumph.  We talked about The Serenity Foundation quite a bit and our plans for it, she had some great ideas and input and I hope to have her involvement as we put the foundation together. 

Part of mine and Adria’s evening routine has lately included going through comments, posts in support of Serenity and reading through the blogs/sites of other kids with Leukemia.  We read every comment and post we find and share and discuss them, and are grateful for every one of them.  When we visit the sites of other kids with Leukemia, we often show the pictures on it to Serenity and discuss it or share it with the other kids.  Tonight we were reading through the story of Isabel, a girl who is now 5 and was diagnosed with Leukemia when she was 3.  Her mom has kept a blog for the last two years and has written over 400 posts in the last 2 years.  There are several very emotional and moving posts on it, but one of the most recent ones really struck a chord with me.  In this post she talks about simply breaking down after realizing just how abnormal their ‘normal’ has become.  Please go read it, I can’t do it justice here.  I felt a small twinge of what she describes yesterday as Serenity just looked at me while I was giving her her medicine – and she just opened her mouth and took it.  She gave up the fight, just accepted the nasty medicine and said “all done?”.  On the one hand it was nice to not have to fight her on it, on the other hand it kills me that she has to accept it.  Gibson, our 7 year old daughter, took over my computer and read through about a years worth of Isabel’s blog.  She read for about an hour and a half and said she was sad that Isabel was sick like Serenity but that she thought Isabel would be ok.  She was elated when I told her she could send Isabel an email and then she proceeded to write it all herself.  This is our life now – the life of a family dealing with childhood Leukemia.  In many ways it has brought us closer together.

On a different note, I want to again express gratitude to all those who have donated through the ChipIn widget.  Those donations have made a HUGE difference for us as a family.  Donations have ranged from $5.00 to an anonymous donation of $4,000.00 that brought it to the goal of $10,000.00.  Every one of these donations, from $5.00 and up has meant a great deal to us and we’ve been astounded at the love and generousity that have been shown to us by each of these people.  It has thus far kept us from feeling a financial crunch and has allowed us to adapt Serenity’s environment to fully accomodate her.  I honestly don’t know how we would have paid for drugs, gas and dozens of other things up to this point were in not for the help of all of you.  Now, as we stare at a rapidly growing pile of bills that currently total about $45,000.00 and increase daily, Jesse (our good friend who initiated the ChipIn effort) and others are talking about increasing the goal and redirecting efforts to try to cover our growing medical bills.  I can’t tell you how grateful we are to all those who have helped keep this crisis from crippling our family.  

Now for an update on Serenity.  Tonight she threw up again for the first time in a couple days.  She had been doing so good at keeping everything down and at dinner she had quite an appetite, she ate and ate.  About 30 minutes after dinner, thinking that her nausea must be gone for the time, I got her evening medications ready.  Usually, I would give her a dose of Zofran to calm her stomach and wait half an hour to give her the rest of her drugs.  Thinking she was feeling good, I decided to make it easier on her and only make her take them once.  So, I put together a cocktail of 5 different drugs and loaded it all into a syringe.  I put the syringe in her mouth and as soon as I had pushed a tiny bit into her mouth I could tell she was going to throw up.  Because I thought she was fine, I hadn’t gotten anything ready in case she threw up so I had to grab her and run to the sink, she ended up with it all down the front of her (and me).  Once she was settled, I cleaned her up, gave her a sponge bath and then Zofran to settle her stomach.  Half an hour later she was able to take her drugs and keep them down. 

Coming back to the begining of this post, one of the things that we discussed in the conversation I had today was mortality.  When Serenity was first diagnosed with Leukemia it was an incredibly scary thing (still is), we didn’t know if that was going to be our last day with her or what.  I didn’t think I could deal with losing a child like that, I couldn’t even imagine it.  Now, almost 3 weeks later, I’m in a different place.  I don’t think she’s going to lose this battle, I think she is gonna kick cancer’s butt!  But, if she lost the fight, while I would be devastated and torn up by it, I think I could deal with it.  I think it’s pretty messed up for a parent to be forced to come to that realization – I also now know several parents who have had to.  It’s kind of liberating.  I’m prepared to deal with losing this fight – and that makes me all the more committed to NOT losing it.  It turns the cancer more into a thing that we’re battling – instead of picturing it as a fight for her life, I can picture it as a fight against cancer.  That might not make a lot of sense to most people, but I think it will to parents who have been here before us.  On that first day when we found out she had Leukemia, I prayed for more time with her, prayed she wouldn’t be taken yet and vowed to do everything I possibly could to get her through this.  I still pray for that and still vow that.  Two and a half years is a very long, very uphill battle and with this new realization I feel I’m now fully prepared to take it on.

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

I’ve been up a lot of the night with Serenity, she’s just not feeling very good.  I’m realizing that two and a half years is a really long time to keep this up.  I’m angry at cancer and whatever caused this to happen to my little baby.  I’m really pissed off that because of this stupid disease she is sitting here suffering in ways I cannot imagine. 

As is usually the case, this isn’t the only thing going on in life right now.  I wish I could make everything else just stop so I can deal with this and help her.  Everything sucks right now and motivation to work on improving it is hard to find, I can’t even find motivation to go mow the stupid lawn.  Not to mention all the crap I’ve got to deal with.  I want to throw in the cards, give it all up and start over (but keep all my kids – and their health).  Why didn’t I become an Oncologist so I was prepared and able to actually do something about this damn disease?  Instead I’m just a stupid programmer that helps businesses do stuff better – how lame is that, what is the point in that?  I look back and feel like my whole life has been useless and hasn’t helped anyone out – I’m 35 and only now becoming intimately aware of this disease and all the other people that have suffered from it. 

How could I have lead such a trivial life?  How could I have been so completely ignorant of such important things?  It’s hard to consider much of anything to be of consequence at this point.  It seems that life and our pursuits are really just a big joke.

If you take anything away from reading my blog, please, take this: In the blink of an eye, almost everything you think is important in life can become meaningless and stupid.  If you aren’t in this position, be grateful, know that you are dearly blessed and pray it doesn’t happen to you.  Be mindful of focussing too much on things that aren’t important – when it comes down to it, your family is all that really matters.  Don’t be like me and require your child’s life to be at risk to realize it.  The self-loathing, self-pity and self-judgement really isn’t worth it.