Phil801 - Geek Blog

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.

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.

UPDATE: Day 39 is here.

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.

This is Day 36 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 23 is here. 

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.  I believe I’ve found an excellent way to use technology to help families who have kids with Leukemia and other medical crisis. 

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. 

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

UPDATE: Day 38 is here.

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.

UPDATE: Day 36 is 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.

UPDATE: Day 23 is here.

This is Day 17 of my baby, Serenity, being diagnosed with and treated for Acute Lymphocytic Leukemia.  Day 16 is 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.

UPDATE: Day 19 is here. 

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

This is day 16 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 13 is here. 

This weekend has totally and completely sucked.  I’m sure a big part of it is the compounding effects of the events of the last two weeks, never being able to catch up on sleep, bumpy stuff with work, etc.  But the weekend that just won’t end started early Friday afternoon on a bit of a good note - I headed home earlier than planned. 

Turns out I wouldn’t have been there much longer anyway since on the way home Adria called me and said that Serenity had been completely not herself, pale, ornery, in pain.

Pain is expected - Leukemia hurts.

Ornery is expected - being on steroids just does that to a person.

But, rule 2,483,123 of having a child with Leukemia states: “If the child is not being herself and her color isn’t right, take her to the E.R. and get her blood checked.” It might be rule 2,483,122 - I’m not positive - actually, I think that one talks about never expecting your life to be normal again.

So, I cancelled my fantasy of maybe being able to actually go do something with Adria Friday night and got on the phone and started making arrangements for the other kids while I drove home, Adria packed our bags.  I got home and we loaded up Serenity and headed to the E.R..  She really didn’t look good.  By the time we got to the ER at Utah Valley, the oncologist had already been on the phone with Triage and they knew we were coming.  As we pulled up, I had my little speech prepared to keep us out of the waiting room (neutropenic means her neutrophil (a type of white blood cells) counts are extremely low and she has little to no immunity):

“This is Serenity Burns, she was recently diagnosed with Acute Lymphocytic Leukemia, she is neutropenic and is symptomatic of requiring an immediate blood transfusion.”

I spouted that a few times, feeling a bit like Jane from Firefly in the episode where they break into the hospital.  Anyway, they sent us into a room to check us in and the first question out of the RN’s mouth after hearing my little speech is:

“Has she recently been on any medications”

I was stunned for a minute, couldn’t think of anything to respond with that wasn’t just rude.  After a second I said without further hesitation, ”well, with recently being diagnosed with Leukemia, she is now on chemo, zofran, dexamethazine, prevacid, oxycodin, PEG injections, sephra on mon and tues, and has recently had about a dozen blood transfusions and as many platelet transfusions - but that really hasn’t changed in the last few days.”

Then it was her turn to be stunned and ask me to repeat the list slowly.  hehe. 

Anyway, we spent the next four hours in the emergency room.  They had to call a nurse down from the pediatric ward because they didn’t know how to access her port.  Then when the labs started coming back, we asked them for specific results.  They told us her ANC was 1.7 - it has never been above .01 since this started and we were startled.  They were ready to discharge us when I told the doctor how surprised we were about her ANC count.  As I explained the history, he nodded and then left.  A few minutes later the nurse came in and said, “umm, her total WBC (white blood count) is 1.7 - her ANC is zero and the doctor is on the phone with the oncologist”.  It would appear that we were a little more versed in blood chemistry than the ER doc, which isn’t really surprising since he’s not an oncologist. 

The good thing was that her platelets were 51 - which was pretty good for being 5 days since her last transfusion, and her red blood counts were good.  So we checked out of the ER and went home.

Now, those of you who know me well know that we are normally very tolerant, almost too tolerant, when it comes to medical situations with our kids.  After raising 8 kids you tend to get that way.  We haven’t taken one of our kids to the hospital in years and barely ever take them to the doctor.  We’ve had half of them at home, the twins have only been to the doctor once after they were first born.  The point is - we have been very clearly told that when it comes to Serenity we have to now be extremely paranoid.  Even though she was fine, we did the right thing taking her to the ER, the oncologist is the one that said we should.  We’ll probably do it dozens more times and be wrong, but on that one time we’re right it’ll be worth it.

So, that was a late night in semi-crisis mode.  She was up all night not feeling good at all.  Then Saturday everyone was really tired, Adria started getting a migraine and I had this bizarre allergic reaction to something - Adria thinks the new dryer sheets she switched to are the culprit.  So I took 50 mg of benadryll to combat the hives I was covered with and crashed around 2 pm - and woke up about 12 hours later feeling much better.

Adria woke up this morning with a killer migraine and I felt like crap.  At about 5:30, Sarek (13 year old son) walked into the kitchen and threw-up all over the place.  That was fun.  We pretty much just lazed through church - we didn’t really ever say “we’re not going”, just nobody had the energy to get up and get ready.  Serenity is incredibly needy.  I’ve thought about twittering every time she needs one of us to get up and get something for her, I swear it’s at least once every 5 minutes.  That’s fine, I truly don’t mind meeting all her needs - it’s just VERY tiring. 

This evening it was time to flush her port (she was re-accessed at the emergency room and we left her accessed since she has a clinic visit tomorrow).  When I lifted up her shirt I was shocked to find that her port dressing was full of blood!  I called the Home Healthcare Nurse and she came over about 15 minutes later.  She discussed the situation with the oncologist on call and after about half an hour they decided it wasn’t a critical situation. While there was quite a bit of blood, it wasn’t still currently bleeding.  The theory is that her platelets are low again and she probably knocked the needle in her port, causing it to bleed a bit and normally to clot quickly.  But they decided it probably just took a while to clot this time.  So I took a sharpie and outlined the blood levels so we could tell if they changed and the Nurse left. 

Tomorow we have a clinic visit in the morning at PCMC.  The weekend will hopefully end after that - but last time we were at the clinic it went unitl 8 pm.  I don’t really like this weekend.

UPDATE: Day 17 is here.

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