Prayers...

In April, 2010, when Andrew was 2 1/2, a tumor was discovered behind his eye. The tumor was removed, but it was found to be an aggressive cancer. He endured seven months of chemo and six weeks radiation. In December of 2010, the day after his last treatment, he was rushed to the ER with an almost fatal bacterial infection. He survived.

He is now seven-years-old!! I don't visit here much, because during the ordeal, this is where I dumped everything--my rage, my fear, my sadness, my ugly, my hope, my everything. But I want all of you who supported and prayed for us to hear his updates. You helped me survive, and I am deeply thankful. Every once in awhile, I will check in to let you know how he's doing. Please continue to pray that cancer will never return to his body. Thank you.



Sunday, June 27, 2010

My apologies to the good ones

I know on various occasions I have gone on venemous tirades against those in the medical profession. I am sorry. It has come from a place of pain and frustration.  I know there are plenty of beautiful, compassionate, empathic doctors and nurses out there.  Many of them are my good friends.

My OB is amazing.  Andrew's oncologist is wonderful. Andrew's neurosurgeon was wonderful.  Many of the nurses on the floor are sweet and empathic.  I am hoping that soon I will be able to say the same for my regular oncology nurse.


So why am I complaining?  I suppose it is the overall experience.  It feels calloused and doctor -focused.
 
When I enter the hospital doors, my body begins to shake.  Despite the many good doctors, my experience so far, has not been especially positive.  I know we are receiving the treatment Andrew needs in order for him to have any chance of life.  I just wish there were a more humane way to receive it. It is so damn painful.

I suppose there are no better solutions, but hospital living is horrendous.

As soon as we discovered Andrew's tumor, we were shuttled off to a room, with a moaning roommate, whose blinking lights and noisy alarms went off all night.  I am sure they appreciated our intrusion as much as we appreciated their company.  It was a Saturday, so there were few doctors around, just interns and residents with lots of repetitive questions, and few answers. We had to wait until Monday to meet with anyone about surgery.  It was a long wait.  Lots of testing, and Andrew was prohibited from eating.  Parents have to use the bathroom down the hall.  It was horrendously hard.

Our neurosurgeon, once we met him, was beautiful.  He sent us home for one day of play before coming back in for Andrew's surgery.  He did a great job removing Andrew's tumor and Andrew recovered quickly.  I am thankful for him.

Unfortunately, we were then shuttled off to another shared hospital room.  Where once again, we were with a roommate, this time, someone who stayed up until 11:30 every night.  Blood draws were every morning at 4 am, and Andrew woke up screaming every time.  Sometimes he did not go back to sleep.  Once again I was forbidden from using the bathroom in the room. 

At one point, right before the diagnosis had been given to us, the transportation showed up to take Andrew to tests on his heart and kidneys, with no explanation, and no diagnosis.  Apparently everyone knew his diagnosis, but us.  The doctor showed up later and apologized, and then gave us his diagnosis.  He was a very sweet man, but his English was so choppy,  it was hard to understand him, and hard to understand all that he had to say about Andrew's diagnosis.  It would have been hard enough to hear in a sweetened-up English voice.

Then our assigned doctor showed up (we have since switched).  She did not greet us, or smile during the entire time.  She was as gloomy a person as I have ever met and proceeded to give us all the worse case scenarios.  She was followed up by her nurse, who seemed to relish the power she had in the situation, and described in a very cold manner the side effects of chemo, and all that would be done to him in the next year.  When they left the room, there was the most depressing solemnness I have ever experienced.  My parents were there, my husband's dad was there, and I was there, unfortunately.  I am glad that the information was over Andrew's head, because he was there as well.

And then there is the clinic office.  My nurse is just not an empathic person.  It has been hard.  I would never share any concern or feelings with her, because I don't trust her care or concern for Andrew.  I am just in shock as well that they would take these children who are already tortured every day by chemo, and needles, and medicines,  and then stick toothpicks up their nose every time it runs.  It just boggles my mind.  I start to feel like they have forgotten that these children are just as human as their own kids at home. 

And then when I go to the ER we are bombarded, each time, with interns, and residents, and nurses.  We usually get there late at night, and are visited every fifteen minutes by someone new.  I actually had someone ask me his diagnosis at 3 in the morning.  There are so many things about all of this that just feel so inhumane.  It seems like things could be done differently, with the patient and his family in mind.  It makes me rageful.

I feel like I am expected to have a supernatural threshold for emotional pain, and God- like grace, and unending tolerance.  But I don't.  I am wearing thin from all of it.  It seems so calloused and routine for them.  It is traumatic and heart-wrenching for me.  It is traumatic and painful for Andrew.  We got a horrible diagnosis, and then got thrown in prison.  That is what it feels like.

So my anger is very real, and constant.  I am trying to figure out how to channel it, but where should it go?  A lot of it goes here. 

So I apologize to those who read and may take it personally.  I appreciate all of the love, and care, and compassion you put into your job. It is very needed out there in the medical profession.  Thank you for all that you do.

16 comments:

  1. It's a hard thing to handle, the anger. It's got to go somewhere or it'll eat you up from the inside. This is as safe a place as any to vent. Those who read this that are offended by your feelings don't have to read. Or they can try to understand and maybe learn a little from what you're coping with. The rest, we understand that your anger is natural. Let it out. Let it out! I just wish I could say (or do) something that would help. (But I know that nothing really helps but a friend allowing you to express your feelings.)

    I hope you get a new oncology nurse. You guys don't need any more grief and pain with an incompetent uncaring nurse around. I hope Andrew responds favorably to the medication so that it can end sooner than later. I hope you all feel the love and support and prayers that are coming your way... even from this far.

    God bless.

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  2. Julie, I know you appreciate the good ones, but that those few who seem uncaring are so infuriating it clouds the whole picture. Don't feel badly for sharing your true feelings...

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  3. I agree with Wacky Mummy. Let it out! All of it, whatever it is. You'll go back to Andrew and your family with renewed strength and energy to fight this fight. We will listen and support you and just be here, no matter how far away we are.

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  4. I work at a hospital. Trust me, your hospital administrator wants to know, the good and the bad. Write a letter. Nothing will change if they don't know about it. No one deserves to feel the way you are being made to feel, let alone someone dealing with Andrew's health issues and fears.

    I will keep following.

    Colleen
    http://heoreosinheaven.blogspot.com

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  5. Hi, I found your blog today just surfing along. I have three boys, a little older than yours, but three boys all the same (and two dogs!) :) My youngest son has Rheumatoid Arthritis, no fun but certainly not cancer. I agree with Colleen's comments. I would write a letter (or 50!) to the hospital administrator. But, at the end of the day, I think what you are seeing overall is just a medical system that lacks empathy! I wonder why these people have chosen to go into medicine when they act like that around sick kids and their parents, and are they even aware of how they are acting! And just as I am telling you to write a letter, I also think if it was my baby, I wouldn't want to waste one precious second dealing with that garbage, I would want to be focused on the family. I don't know what the right answer is but I am sure you are not alone. Rageful, to me, is totally appropriate, shoot, just reading it makes ME rageful!

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  6. It feels better to let it out. So let it out!

    Hugs, upon hugs, upon massive hugs!!!

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  7. I echo everyone elses sentiment - it's got to go somewhere, and if it gives you some release to let it out here, then we will be here to listen to you and provide support as best as we can.

    I also agree that a hospital administrator needs to hear about this too. Is there a patient advocate that can help you get your message to the right person? Us moms can change the world you know!

    ((hugs))

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  8. ok sweetie - just found your blog - just spent the last 20 minutes reading - I cannot even imagine what you are going through - or maybe I can because it is my deepest darkest fear but still - so hard and I am so sorry. You are in my prayers now - for sure!!!!!

    Holly

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  9. ah Julie - I'm so sorry - I'm with the other readers - vent, vent, vent - get it out. Also, I keep hearing about Cancer Treatment Center for America on the radio - every advertisement is from people who've been there and say the attitude they receive from everyone is wonderful. I don't know - maybe it's worth a shot - maybe they don't do kids - I don't know - there is one in Phoenix though. Praying :(

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  10. I'm praying for you...HUGS.

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  11. Oh Julie - Never, never, never feel like you have to apologize for your feelings. It is a HORRIFIC reality that you find yourself in. My heart breaks that you have had so much difficulty and that your experience has been what it is. My heart breaks knowing that there is so much that can be done to "soften" the already horrific experience, but isn't being done. My heart breaks knowing that your relationship with your oncology nurse should be one of trust, confidence and respect, but isn't. I pray always for you that grace will abound in each and every moment. I love that you own your feelings - do not apologize... there is no one in this world who can tell you what to feel or how to feel. Hang in there and know that I am here anytime you need me.

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  12. Oh my goodness Julie - I am ENRAGED for you!!!!! I can't believe how heartless some of the people that you are dealing with are.
    I have never heard so many bad experiences over and over and over - especially in regards to dealing with a child with cancer. I am SO mad right now. I know that you do not have the energy for it, and that your soul focus is on Andrew's recovery - but something needs to be said about this behavior. I wish I could make a complaint on your behalf because that is just ridiculous.

    Anyway - I am sending you hugs and love. I know that I have stuck up for the medical profession before on one of my comments and I really hope I didn't offend. There HAS to be doctors out there that will treat you with the compassion and care that you need through this difficult time.

    Sending you hugs and love!!!

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  13. I hope no one out there truly takes the things you've said out of anger and frustration personally. If they are....I have a feeling they may be feeling a bit guilty at the way they've treated patients/families at one point. Many people tend to rant on the bad---bad doctors, bad nurses, bad waitresses/waiters, bad salesperson at a store, etc. But that doesn't mean we dislike ALL of them. ;-)

    So I say, if it helps you to rant here, continue to do so. And those that are taking things personally.....well, they need to think about WHY they are doing so. Because unless they are nurse Ursula that you speak of....they shouldn't have anything to worry about. ;-)

    Hope you guys have a beautiful and blessed day!!

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  14. You commented on my blog that you were having a "hospital watch" day. I'm praying for you and Andrew. I hope you are at home today!

    I understand your frustrations! Blogging has kept me sane because to get my frustrations into words I have to think them through and it helps me get rid of the excess emotions, not to mention it keeps me from excessively, verbally throwing-up on my husband.

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  15. My name is Karen and my daughter Lindsey Austin posted link for hats for Andrew on her Facebook. Three years ago I completed a six month "round" of chemotherapy and I can only imagine how toxic this would be on your son. I also work at a hospital and agree with another comment...go to the CEO of that Hospital. Sit at his doorstep until he/she makes time to meet with you. He/she is the one who can make the critical changes needed. You and Andrew are owed that...if they don't listen..go to the local newspaper. Hospitals do NOT like this kind of "news". Best of luck and I'll keep him in our prayers.

    Karen from California

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  16. I cannot say how sorry I am for your experience at this time of personal exhaustion. Hospitals suck the life out of you even in the best of circumstances. To be surrounded by people who you can't 1)understand and 2)trust to be gentle to your child makes it even more tough.

    Please know there are people out here listening and sending you virtual hugs.

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