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Jun 10

I think I’m in that Anger stage

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. 

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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. 

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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.

33 comments

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  1. Amy

    Hey, cut yourself some slack. Every job matters. Everything we do contributes to the world, to our economy, in a meaningful way. If it weren’t for programmers like yourself, the people who work for the businesses that make the drugs to fix things like cancer wouldn’t be able to do what they do (or they would, but they’d be horribly inefficient! Carving formulas into rock tablets because someone like you hasn’t invented the spreadsheet!!).

    I work in a research park where companies are working on things like cancer and alternative fuel sources and all the Big Stuff every day. But you know what? They couldn’t do what they do if it weren’t for the the IT guys, the secretarial staff, the contractors who built the buildings and labs that they work in, even the person who cleans the toilets and empties the trash in their building… It’s all connected.

    Plus, all the work you’ve done all these years has supported your family. Providing for a family of 10 is no small thing, and God Bless you for being able to do it! We have trouble making ends meet, sometimes, with our little family of 4! Every day that you get up and go to work, you are putting clothes on their backs, food in their tummies, and a roof over their heads. Every day that you go to work, you are showing your wife and kids how much you love them, whether you’re curing cancer or doing something totally mindless and banal (like paying bills – that’s what I do!). My brother once worked for a waste treatment company, separating recyclables from nonrecyclables in other peoples trash – but he was preventing reusable things from entering the landfills and saving the planet! It was an awful job, but it mattered. You’re bringing home the money that allows your kids to live and learn and grow up, and that’s not nothing. That’s huge.

    We can’t all be cancer curers. Some of us have to be the people who support the cancer curers so that they can cure cancer. And they’re working on it, just a few blocks from where I sit right now, every day.

    I’m praying for your little girl, and I’m praying for you.

    Amy @ http://prettybabies.blogspot.com

  2. Nancy B

    You have helped ease the load and the stress on countless people who couldn’t focus on the ‘real’ problems in thier lives before you came and fixed the problems in thier business.

    It sucks that you can not see how much you have helped and how that flows into making positive change that WILL flow into curing cancer.

    It’s all there… it’s just not for us to see.

  3. Vicki

    Phil,

    Sometimes we don’t know why God puts us in positions, like jobs. There’s a reason you’re doing it. Right now it seems meaningless, but God puts us here for specific reasons. You’ve made a presense on the internet with your blog, and therefor you’ve been able to let more people know about Serenity. This may be the only reason…

    Your writing sounds so much like the author of Ecclesiastes. There’s nothing new under the sun, and everything is meaningless. And that’s so true when we’re focused on the brevity of life and how we’re truly not promised our next breath. This realization is powerful if the power is harnessed. You’re harnessing that power by the foundation you’re setting up (I think I read that in several of your posts). Please try not to be hard on yourself. We can’t do “what ifs” or “I wish”s (I wish I would have focused more on my family, etc). You can only change your present actions.

    Oh, and ask someone to mow your lawn. Ask for all the help you need right now.

    Reading over this all it sounds so trivial. I search for words to write for encouragement, but they seem lame. I’m continuing to pray for your whole family. Maybe that’s all that needs to be written.

  4. Katie

    I understand that you’re just venting and don’t need to be told that your life isn’t worthless, but may I remind you that you served four years in the Air Force, including 6 months in Saudi Arabia and Kuwait? Your whole life has certainly not been useless :-)

    My sister graduated from USAFA (civil engineering) last year and spent this year getting her Masters. She’ll likely be in Iraq within a year. So this is really important to me too.

  5. amanda

    I am so sorry for your anguish. Kids shouldn’t hurt, period. But you know what? Parents shouldn’t suffer thinking they should have done something differently. You are being exactly what Serenity needs, try to remember that.

    My girls and I are shipping something out your way later this week or first thing next week.

  6. Laura

    A very moving post… I am so sorry that you and your family are going through this horrible ordeal. You and Adria are doing everything you can for Serenity. She needs love, comfort and support right now and you and Adria are clearly both providing ample amounts! You are wonderful parents! I am continuing to pray for you all! God bless Serenity and all of you!

  7. Jordy

    Don’t be too hard on yourself. Doctors need good software too, you know. So do companies that make good software for doctors. So do companies that make good food for good doctors. You get the point.

  8. Phil801

    OK, I’m doing MUCH better – I pretty much had a breakdown last night in which I was just feeling sorry for myself nad 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.

  9. Phil801

    @katie I didn’t realize that the feed on LiftingUpSerenity was set to summary, thanks for pointing it out! I have changed it to full text – I hate partial feeds :)

  10. Ann

    Phil,

    Thanks for the most honest thing I will read today.

    Sounds like you recognize that you are grieving Serenity’s suffering, the loss of the dreams you have for your child, the loss of “normal life” for the rest of your family. It’s not selfish, it’s normal, although some well-intentioned people will shame you for expressing it. As if they know how you “should” act and feel. They don’t.

    There is a good reason why the airlines tell you to put your oxygen mask on first. Caring for the care-givers is essential if you are going to make it through this with your marriage intact and healthy relationships with 7 other kids whose lives will go on for the next few years of Serenity’s journey with cancer.

    1) If it is helping you, keep blogging. Do it for yourself, but you are helping others immensely with your blog. Not many have the courage to tell how it really is. Other parents will find this blog, and feel relief to know that they aren’t alone in their feelings, that it’s normal, and that they will live to have a better day. (Later, you might let the kids guest blog, if you all are inclined, so they can tell their stories for other siblings).

    2) Let other cancer parents walk the journey with you. I am sure PCMC staff can refer you to a parents’ support group. You and your wife deserve to be around people who aren’t just sympathetic, but really know what you are going through, because they’ve been there. Later, you can help the ones who inevitably will follow.

    3) People are clueless about how to help, and they aren’t mind-readers. So here’s what you do: Make a list of everything you and your wife do for your family. I mean everything (laundry, dog to groomer, kids need presents to take to birthday parties; kids to scouts, dentists; school supply shopping, oil change for the car). Look at the calendar, and think about what seasonal things you do. (Turn off the swamp cooler, Halloween costumes, spread manure, easter eggs, prom dresses). Add some special things for your kids in ones and twos that others can do to give them some relief (oldest for a manicure, go-karting for the boys, etc.). Ruthlessly decide what you can delegate. Make a sign-up list of task, frequency required. Call a meeting of your support team (family, church, friends, kids’ friends parents, neighbors). Order 10-20 pizzas. Pass around the list. It will get filled up. Your support team will be grateful for the direction. You two can stay on the critical path.

    4) Paradoxically after #3′s military scale logistical planning, remember the power of the phrase “One Day at a Time,” which sometimes needs to be “one minute at a time”. You don’t have to (and can’t) do the next 2 1/2 years at once. Just one day at a time.

    Put on the oxygen mask now. Serenity depends on your continued breathing. So many prayers are being offered for you. Breathe them in. One breath at a time.

    AT

  11. Susan

    Yes, life can change in the blink of an eye! I lost my soul-mate husband 6 years ago in an accident but the upside is I could have lost my son and other family members.

    This beautiful child is blessed to have such wonderful and loving parents…you parents are blessed to have such a beautiful. As a trauma nurse seeing the children hurting or sick is the hardest thing for my heart to understand.

    God bless you and your beautiful family.

  12. Taylor Blue

    As a mom, I can see your struggles, with life in general. I am thinking of you and your family. I hope that you can get the strength you need to keep everyone happy. I’m glad that you are keeping this blog…writing helps in so many ways…and now others reading it helps other’s too.

    Keep your chin up…

  13. Jeff Barr

    Phil, my friend, hang in there, you are doing far better than most other people would under these very trying circumstances.

    I think that you are doing the right thing by documenting your ups and downs here in the blog. In a year or two you and your family will have climbed a huge mountain without realizing it. At that point you will look back, survey the landscape (your old blog posts), and say “Wow, we made it. Look how far we’ve come.”

  14. T with Honey

    “Instead I’m just a stupid programmer that helps businesses do stuff better – how lame is that, what is the point in that?”

    I’m a stupid programmer too. And this thought has crossed my mind before. I’d love to switch careers, do something that does more, helps more people but I’m not sure what. For some reason God has guided me to be where I am today, doing what I am doing today.

    You commented that you are feeling better, that you needed to vent. I’m glad you did. Blogs are a great source of community. Blog yourself, and others will find themselves in you. We all question ourselves, our worth. Then we realize just how much we are helping, if nothing else, by providing for our family.

    My prayers are with you and your family, and especially for your sweet Serenity.
    *hugs*

  15. Damselfly

    Hugs to you.

    You may be a programmer, but you are also a mom, and that isn’t trivial at all.

  16. slouching mom

    I’m over here from Tumble Dry.

    I’m so sorry to hear the news about your daughter. Know that a stranger is sending strength and hope to you and your child.

  17. seth godin

    What’s a hero?

    Phil, a hero is someone who makes a difference. Who stands for something. Who cares about people who wouldn’t necessarily care about him.

    A hero does things without being asked, and stands up for things he believes in.

    You’re a hero. You always have been.

    Your family is lucky to have you.

    So are we.

  18. Tim Brownson

    Phil, my wife actually is an oncologist and I went for dinner with about 20 oncologists on Saturday night and let me tell you, not one of them is any better than you are, they just do a different job that’s all.

    Also let me add this. I don’t have kids and can’t have kids. My guess is you wouldn’t swap places with me because no matter what happens you’re still dad to beautiful Serenity and nothing can change that.

    Hang in there man because half of cyber space is pulling for the both of you and the other half simply isn’t aware.

  19. derin

    Dear Phil,
    You say that we should feel grateful. May be what I have to say will sound stupid or irrelevant or cruel. But you should be grateful too. Every one of us understand the truth unfortunately the hard way. We lose everything we own, even our bodies and just then we can understand what we really have beyond all those attachments. Right now, you know what is important and true in life and to me this is in itself the most beautiful blessing.
    You may not be an oncologist but you are a father. Don’t you think this is better than being her doctor? You may not be able to cure her, but you can soothe her soul with your compassion and love.
    I hope the very best for you and your family, and send all my healing to dear Serenity. May she live like her name.

  20. PK

    I just came across your site, and reading this post and looking at the pictures nearly broke my heart. I haven’t the faintest idea of what to think, say or do in a case like this. I wish for you, your family and your beautiful daughter the best, and hope so very much that she beats the disease.

  21. Amanda

    Well, Phil, you know I love you guys & will tell it like it is. Yes, this is the anger stage & yes it sucks.

    I think that by allowing yourself to fully experience your emotions & communicate that experience you are traveling this difficult path in the most healthy way possible.

    Make sure Adria has some kind of similar outlet. Without it, lots of parents (yours truly included) can experience a certain type of post-traumatic stress.

    thinking of you, as always,

    Amanda

  22. Syn

    Those pictures are heartbreaking and brought tears to my eyes. (((HUGS))) to everybody who needs one.

  23. Joel

    Kids should not feel such pain, and we, their protectors, should not be powerless to stop it.

    My heart is with you both.

  24. Ben Twogood

    I’m so sorry–I hope that your child and family heal and I will hold you in my thoughts.

  25. Rev. John Eldridge

    I just stumbled across your blog. I can not imagine being in your position. I want you to know that I am asking Jesus right to completely heal your child supernaturally.

  26. Iceman

    I can only echo the sentiments of the other respondents. May they and you and yours be blessed and held close to the bosom of our lord Jesus Christ.
    Amen.

    Keep the faith brother for God is near.

  27. Iceman

    Follow-up-

    I trust your daughter is receiving the proper care.

    ‘ St. Jude Children’s Hospital’

    http://www.stjude.org

    is also a fine organization that I’m sure could further assist you with any of your concerns.

  28. tricia

    i have a 2 1/2 year old daughter and seeing this broke my heart.best of luck to your family and especially to that beautiful little girl.i will be praying for her and for your whole family.

  29. Gaven

    Dear Phil,

    My heart goes out to your little angel and to you and your family…. struggles like these are just too hard to understand why they even have to be and there is really nothing that can be said to justify them… so, do not feel bad or ashamed or anything like that for being angry… you have that right – that’s your baby. Just know that you are doing the best that you can and that you are making a difference, you are helping… your presence, your love, your vigilance is making things a whole lot easier for your little angel to fight this battle that she’s in because she doesn’t have to do it by herself… she has you to lean on and while that might not seem like a big deal to you, trust me, it is a huge deal to her… peace, love, and light to your baby and to you and your family…

  30. Anjul

    Prayers for serenity and family.

    //Looking at life a with big WHY.

  31. Kimberly

    I found your blog via Tumble Dry. My heart goes out to you. I cannot imagine what you all are going through. You and your beautiful Serenity will be in my thoughts and prayers.

  32. Shaun

    When hearing about something like this I always begin to wonder why God allows events like this to happen. As hard as it may be for you to believe, It is your story which has helped me see the good that can come from something as upsetting as this. Whether Serenity is getting healthier or not, after two and a half years, you have shown the importance of never giving up. Even greater, you have shown the importance of Love, Family, and Faith. I can only hope that one day I will be able to show my family the same strength you have shown yours. When you are feeling down or when Serenity is having a particularly bad day, know that you AND Serenity have already accomplished something that many of us strive to achieve at least once during our lives; to affect others (just look at the comments). You and your family are in my prayers.

  33. Ashley

    Keep an open mind and check this out.

    http://www.hacres.com/testimonies/testimonies.asp?strterm1=cancer

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