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.



Tuesday, October 26, 2010

No coffee. No pie. Just a whole lot of mouth sores :(

No coffee today.  It might have been dangerous.

See, I think I need to guard myself from ever expressing my positive thoughts and happy emotions because whenever I express them, BAM WHAM SLAM God knocks me to the ground, pounces on my stomach and dares me to get up.  At least, that is what it feels like.

Happiness, positivity MUST BE SQUASHED.  I am not allowed.

Spent these last three nights in the hospital.

Friday Andrew was kind of lethargic, like he tends to get the ninth or tenth day after chemo.  So I expected it, and took it in stride. 

Saturday he was really lethargic, and was on my lap almost all day.  I felt kinda sick too, so we both watched lots and lots and lots of cartoons.  (There are a lot of weird kids' shows out there!) He was running a low fever, about 100 degrees most of the day, but that is normal too, so I just thought we would ride it out.

However, about 8:30 pm he spiked a fever of at least 102.  I knew that he had no white blood cells in his body (the ones that fight off infection) because of the chemo.  And then I noticed his mouth was starting to look swollen.  Within seconds I began to think that perhaps he had a bad infection in there that had been spreading all day and was continuing to spread while I stood there holding the thermometer. 

So I panicked.  Starting throwing clothes all over my bedroom trying to pack my bag for the hospital, threw my credit cards all over the counter looking for the clinic phone number (which is on my phone...duh).  I was literally shaking and hysterical. 

So, lets just say the bag of clothes I packed was not thought out, or even matching.  There were some tops and some bottoms, and that was about it.  I forgot my computer, and my phone charger, and ran off to the hospital in a panic. (I never made it back home during those three days, so I got some new undies from Walgreens, and Andrew and I were mismatched and disheveled the whole time.  oh well.)

On the ride over, I was thankful that my lethargic son still had enough energy to sing along (and perhaps even make a few sad punching maneuvers) to "Eye of the Tiger"  while we drove to the hospital.  His amazing attempts to keep moving through the pain make me very emotional.

Turned out he did not have an infection.  I am so relieved.  But he had horrendous mouth sores, and still has them (but not as badly).  This was the worst chemo reaction he has had yet.  One of the most powerful of his medicines had not been given to him for three months because it interacts with radiation.  So he had a three month break, and when it was recently reintroduced, his body took it hard.  At least, that's my theory.

It was awful.  He was so hungry, but he couldn't eat.  He sat hugging his turkey sandwich for an hour before he gave up.  He fell asleep clutching a green frosted cupcake, which he had been bravely licking every now and then.  He stared at a chocolate chip cookie for 24 hours before he withstood the pain and slowly and agonizingly maneuvered it down his sore-infested throat.  It was horrific to watch.

Sunday morning he woke up with blood dripping out of the corners of his mouth.

And then while I'm in the hospital (after my mom brought me my phone charger) I get emails asking which "cancer support network" I want to donate to.  Do I want to support one that gives trophies and doodads to the siblings of cancer patients?  or how about art classes for cancer patients?  They all seemed to be trivial ways to donate.

HOW ABOUT...I tried to reply to the email but of course it was a noreply@ email. 

But what I wanted to say was SPEND THE MONEY ON RESEARCH.  EVERY LAST PENNY.  Don't spend it on cheesy trophies.  FIND A BETTER CURE.

I get so mad because it seems a nice charitable game to some of these people. 

I start to feel rage at the whole cancer community.  Are you so entrenched in doing what you do that your livelihood is at risk if alternatives were actually found?  I start becoming a very angry skeptic when I see blood dripping out of my baby son's mouth.

I have absolutely NO INTEREST in donating to any cancer organization that does not put the money DIRECTLY and EFFECTIVELY into the hands of those doing the research to find SOMETHING BETTER.  I need to find one like that, if there is one.

DISGUSTING. DISGUSTING. DISGUSTING. DISGUSTING.

I wish I had more faith.  I wish I had more trust.  I wish I were more positive.  But when you wake up to find bloody drool all over your son's pillow and he can't talk or eat and his cheeks are swollen up like a chipmunks because of "medicine..."  Well, it is damn hard to be positive.  And then I feel guilty for complaining.  Because really, my choice is bloody awful mouth sores or death.  Its a no-brainer, but still horrific.

People say we can hope because God is in control.  God was "in control" before Andrew got cancer.  I find very little solace in that statement.  It is hard to believe that God cares one bit.  It is hard to believe that anything God says about "calling on him" is real.  It all starts to feel like one big fat rationalized lie when you see the newborn baby in the room next to you, in the oncology ward, and his sad mother in a blanketed heap on the bed. 

And out of the other side of my mouth I beg and plead for faith and trust.   I pray that I will feel his presence and his hope and that he will heal Andrew.

And I was just feeling so peaceful and my mind had been cleared from the obsessing I had been doing!!!  I had relaxed and hoped and BAM WHAM SLAM onto the ground.  Pounced on.  How dare I relax?

I need to take up boxing.  Or Karate.  Or something where I can hit things and scream.

Too bad my back hurts like hell and I keep having to sleep on hospital beds.

Physical therapy first.  Then Karate.

So no pie today.  And no coffee.  No positive thoughts.

Maybe tomorrow...

20 comments:

  1. wow. what a rollercoaster. and that might just be the saddest thing ever-hugging his sandwich. hang in there. for tomorrow and its possibilities and the hope it brings.

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  2. I cant even being to imagine what your going through, but the images you paint make me want to cry for you both. I know it sounds pathetic, but I am sorry for what you are all going through, and I pray that somehow you are able to get some calmness and peace. Or something. Hope things look up. xXx

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  3. My heart is breaking for yourr little man! Hang in there, you and him both.

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  4. Thank you for sharing your story. I hope you found some release in telling it.

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  5. How about instead of chatting over pie and coffee, I'll watch the boys for you and you can go get a massage? Or go for a power walk around the block and blow off some steam?
    I'd be happy to do it for you...
    (hugs)

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  6. Oh Julie, I'm so sorry... I hear what you're saying about not wanting your money to go to doodads to make kids *feel* better, but actually wanting your money to go to making kids *better*...

    Could you have Andrew swish some watered down tree oil in his mouth to help with the sores? I've used it before for canker sores in my mouth, but I can't imagine a whole mouth full of sores... Poor fellow...

    (((hugs)))

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  7. How about I send you that pie and you can throw it in somebody's face? That might be therapeutic? :)

    Julie, I'm so sorry that Andrew is having this reaction to his chemo. It's just not fair that you and he and your family have to suffer through this. I hope that his mouth starts feeling better soon so he can enjoy those cupcakes and cookies like he deserves.

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  8. I'm with you on the whole donations and money spent thing. I have no idea why there isn't a cure already! Take some comfort in knowing there are people out there thinking and praying for you, and your baby(whether there is a God or not.) Hugs!

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  9. I'm so sorry, Julie. I hope he's feeling a bit better now. (I wish there was something I could say or do that would help.) (((hugs)))

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  10. All I can say is DITO!!! This fucking sux! (excuse my french, but at this point...who cares)

    I am curious, did they take him off of Vincristine when he had proton? They did not do that to Spencer and I had not heard about a reaction due to both! Email me pls and let me know! We return to PHX in 3 days from NYC (Slaon Kettering) and we cannot wait! I hope and pray you never get to this point but I LOVE SLOAN KETTERING!!! We simply went to MDA for Proton but if you ever need a second opinion, this is the place!!!

    --April

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  11. Julie, I am crying through this post as it breaks my heart. I fear they will never find a cure for this monster because it is the cash cow for too many people and that just angers me to no end! We have our next scan in two weeks and the fear I feel is paralyzing. I can't fathom what you all must go through...Hugs to you my friend. XXOO

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  12. Oh, Julie, this rips my heart out. I don't have any good words except that you've got some of that "eye of the tiger" in you, too. You and Andrew are both fighters, and you will get through this. Together. Thinking of you all tonight.

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  13. Oh, Julie, my heart breaks for you because I know how difficult it is to see your child, especially your baby, suffer so. There is some maternal connection that makes it difficult to separate our own emotions from those of our children. As a parent I now understand my own parents' admonition that a spanking was "going to hurt them more than it hurt me." This entire ordeal is such a test of your faith, and I think you are managing quite well, all things considered. I look forward to the day you can look back on all of this with a renewed faith and thank God for how far you've come. I appreciate your thoughts and prayers during our trying time, too. Thank you for stopping by when you have so much going on yourself.

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  14. Julie I read this post and tried my hardest to imagine what it must be like for you to see your baby son suffer in this way, and my heart just goes out to you. How awful for Andrew. You are right, all the charitable donations and more need to go into research and experimental treatment to find cures.

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  15. Hang in there friend...

    www.curesearch.org This is your organization - the best at supporting/funding childhood cancer research... THE reason we have gone from death sentence 30 years ago to an overall 80% (and growing) cure rate. With what we have already accomplished, I truly believe that we will see the day in our lifetimes that we reach 100%. The bulk of the current research is studying "targeted therapy" - drugs that kill only the cancer cells rather than traditional chemo that kills everything - less toxic and more effective.

    Pardon the ramble... This is why I can still do this work... the research. Wish today was our 100% day...

    So, so glad Andrew is feeling better.

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  16. I totally cried through this post. I don't have the right words to say. I hate that your precious little guy is hurting so much and that his mommy is, too. It isn't fair at all. I think you have great points about all of the money going directly to the research/cure-finding source. I hope today is a brighter day for you and your beautiful boy.

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  17. Hi Julie - my heart aches for you. If I were close by, I'd give you a great big hug and I'd run some things to the hospital for you so you wouldn't have to worry about running to Walgreens. I'd bring Andrew a frozen plastic ring in hopes that it would help the pain. I am praying that things get get better soon and for things to stay that way - for a very long time.
    xoxoxo

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  18. I read this on Tuesday when you posted it, but didn't comment because, at the time, I couldn't find any words that seemed appropriate or helpful or anything. It sucks that your baby has to go through all this and it sucks that you have to watch him go through it. I love that he has such a strong and happy spirit despite all of this. It's amazing.

    Your comment about sending money to fund a cure not to buy toys or other such things really hit home. I have never understood charities that ask you for money with the promise of a t-shirt or stuffed animal or whatever in return. It feels like a waste of my money. If you find the "perfect" cancer charity let us all know so we can send our money there.

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  19. I sat staring at the computer for so long, my heart aching for you, my mind wondering if I'm a hypocrite for praying that we make it to magical year #5 for my husband. Please know that there are people out there praying for you and donating directly to medical research clinics to find a cure.

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