Author: Phil

 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.

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 with 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.

 This is day 13 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 11 is here.

First, thanks to everyone who continues to comment and especially those that are still blogging about Serenity.  We really appreciate the emotional, financial and spiritual support that continues to roll in.  I’m preparing some stats on the chipin donations that I want to share in an upcoming post.  The amount that has come in is staggering, the number of people – especially those we don’t know – who have donated is amazing.  It’s all happening because of all the people who have installed the widget on their site and who have blogged about it, it really is becoming quite a study in internet based support.

Her Zofran, which is for nausea, ran out today – it’s only $250 bucks a bottle – so we have to get some more tomorrow.  I’m pretty sure we’ve already spent over $1,000.00 on medications.  We’re already getting bills from the hospital, it’s only a few so far – lots and lots more will come – and it already totals over $8,000.00. 

Serenity is doing pretty well, all things considered.  She still throws up several times a day but she has been eating pretty well.  She’s lost several pounds and looks frighteningly thin, but it’s to be expected.  She takes steroids to counter affects from her chemo and Perced to counter the effects of the steroids and zofran to counter the effects of it all, Oxycodin to counter the pain from the chemo and leukemia and Sephra to keep her from getting pneumonia that she is susceptible to from the chemo.  She panics everytime she sees a syringe, signs ‘all done’ (we teach sign language to all our kids when they’re infants) and says “No Medicine, done!”  Then screams as we force it in her mouth.  But, the screaming is subsiding and the panic is as well.  She now frequently says “no medicine” as a question every time we approach her (without syringes).  We tell her “not right now, but in a little bit” and she relaxes a bit.  I think she is beginning to adjust to the idea that she has to take medicine all the time although she has no idea why.  I think that’s the worst part – she doesn’t have any clue as to why all the sudden she is getting all these treatments and her parents are forcing her to take yucky medicine.  When she throws up she pushes her throw up tray away and says “all done” – at almost two years old she is already a pro at puking. 

There are happy times now too.  She frequently plays with the kids and likes to play little games with her parents.  Today she was playing “poke dad in the face” which she thought was absolutely hilarious.  My favorite times are when she finds something exciting and starts to laugh.  It’s a beautiful thing to see her laughing.  After all she’s been through in the last 2 weeks it’s just wonderful to have her with us and to have her laugh.

This is Day 11 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 9 is here. 

I HATE Cancer.  I cannot stand what it’s doing to my baby, it rips me up inside every time she is affected by it.  Today was one of the worst, second only to dropping her off for surgery on Sunday.  I think any Father can understand (but hopefully hasn’t had to experience) the feeling of helplessness, frustration, anger and impotence of watching your child suffer and being completely unable to do a single thing about it.  A father is supposed to be able to keep his children safe from harm, he is the protector and the provider.  Cancer completely robs a father of those abilities.  How does a father spurn an invisible, untouchable and deadly enemy?  It forces you to do things and allow things to be done to your child that you would never do in real life.  Seriously, what father would hold down his baby, force liquid into her mouth that he knows will probably make her puke instantly – and when she does puke, as soon as she is settled, you force the same thing again – yet in the last week I’ve done it dozens of times to her. 

Today I watched and held Serenity still as they gave her drugs to put her to sleep so they could shove needles into her back to inject poison and her hip to extract bone marrow.  I’ve seen people stoned many times before – once she was clearly stoned out of her mind it didn’t really bother me.  Then they gave her drugs to put her to sleep, she was sitting up, leaning against me and it was simply as if she had taken a nap.  Then I laid her down – and that was the bad.  It wasn’t like she was asleep – it was like she was dead.  Her eyes were wide open, she was quite stiff, and it totally reminded me of the only time I’ve held a dead person.  It completely freaked me out – I had just stood by and helped as they apparently killed my baby.  I knew intuitively that she was fine, that it was a simple procedure that the doctors and nurses had done many, many times.  But mentally I had just watched my baby die, it took me a bit to get past it.  I didn’t, couldn’t mention it to Adria, she was a little freaked out by it too.  I hate that Cancer made me allow, even assist, in making that happen.

Of course, she was fine but the point remains: I hate Cancer and what it makes a Father do and allow.

On an easier note, we had Serenity’s hair cut today.  Her long hair was beautiful but it got in the way every time she threw up.  It was hot and frequently sweaty and is going to fall out very soon anyway.  So today she got a bob.  It’s different but quite cute! 

And on a happy note, after she had her intravenous chemo treatment, her bone marrow aspiration, her lumbar puncture along with her spinal chemo tretment, and new platelets – she had her port de-accessed.  That means she had the dressing, tubing and needle removed from her port – now her chest is clear and the only unusual thing about it is a bump in her chest above her heart.  She is SO happy and proud of that! 

The other cool thing she got today was her “Courage Necklace” which is a cool thing that the Child Life people at the hospital do for the kids.  They get a necklace with beads on it that spell out their name and they get a particular bead for different things they’ve done for their treatment.  There’s one for an ambulance ride, one for chemo, one for surgery, one for getting a port and about 30 other things.  Today Serenity got about 15 beads (too bad they don’t have one for puking, she’d have about 70 of them)- she’s been through a lot! 

I’m SO glad that our baby is still with us, I’ll have to watch all the events I’ve described here happen repeatedly over the next 2 1/2 years until she is cured – and I’ll do it gladly.  But I still HATE Cancer.