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Ragin’ Gage

Gage started delayed intensification last Thursday. It was a long time in coming, six months in fact. Some days, I never thought we’d get to this point, and now that we are here I am scared of all the complications that can happen. I take his temperature like every hour just to make sure he doesn’t have some random fever. I call is doctors because his cough is back, and oh my gosh is that a rumble in his chest, did the cough move to his lungs? I have an overnight bag packed just in case we have to go to the hospital at the last moment.

The Delayed Intensification “road map” looks like this:

This is what Gage is going to be subjected to in the up coming weeks, he should also be receiving Pegasparaginase (PEG), which is two shots in his legs during week one. But he had the allergic reaction to the last shots of PEG he received, which in turn caused him to get pancreatitis and the ulcers on his pancreas that landed us in the hospital for three weeks before Christmas. So thank you Baby Jeebus, no more PEG shots!

Since starting delayed intensification, Gage has been so cranky. He is on seven days of dexamethasone, and seven days off for a couple of weeks and not only is he getting adorably chubby, since he is eating like a little piggy but he is getting not so adorably bitchy, as well.

His nick name from the hospital is back, we call him Ragin’ Gage. He screams and fusses all day long and as soon as Daddy comes home, he is all sunshine and lolly-pops. I have  actually called the Hubs at work, in tears begging him to come home, because there is nothing I can do to fix Gages tantrums. I know it’s the medicines fault that he is acting this way, but after seven hours of screaming fits, all rationalization is out the window.  Though the highlight to being at delayed intensification is once we are done with this round of chemotherapy we head into maintenance, which is kind of like the light at the end of the tunnel.


This is what Gage looked like last time he was on the dexamethasone. So cute and chubby! (sorry the picture is so blurry it was taken on my iPhone on zoom)

End On A Happy Note

Happy Valentines Day to the loves of my life. You both bring me so much love, joy, and light to my life. I love you both more then mere words can say.

i carry your heart with me
(i carry it in my heart)
i am never without it
(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)
I fear no fate
(for you are my fate, my sweet)
i want no world
(for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

by: e.e. cummings


Ready For Anything

I don’t think that I will ever breath easy again. The panic attacks are back with a vengeance and I can’t control them. I don’t see things that have happened but things that could happen. Since Gage was diagnosed back in August of last year, we have had to be prepared for the worst. And by worst I mean I have his funeral planned out.  I know nobody wants to hear this but it’s truly been my way of coping with his leukemia. Sitting nervously in the waiting room at three o’clock in the morning not sure if he was going to make it out of surgery, I prepared myself. What Gage would wear, what the Hubs and I would wear, the colors. I knew then that no matter what since Gages life was such a joy and celebration to us, his funeral would be the same. A party in his honor, a celebration of his life.

It’s with a cold detachment that, when I think of it all, almost like it’s not happening to me. Like it’s not my baby. We all tend to think because he is doing so well right now, that he will continue to do well. Which is what I am begging for, because I truly do not know what I would do, if anything were to happen to him. But that can all change at the drop of a hat, he can end up sick and in the hospital, or worse. His life is just so unpredictable right now, as a family we don’t take a single day of Gage for granted. Which means he is going to be so spoiled because we can’t seem to say no to him, or take away his bottle.

 

11-20

YOU KNOW YOU’RE THE PARENT OF A KID WITH CANCER WHEN…

    11. Your new bathroom trash can has “Hazardous Waste” written on it (recycled sharps container)
    12. You can maneuver a double pole with six boxes and a kid riding, on a tour of the hospital, and make it back to the room before the low-battery alarm sounds and the kid has to pee
    13. You realize you’ve been home two weeks, and you’re still measuring I’s and O’s
    14. The nurses stop responding to the IV alarm, knowing you’ll fix it anyway
    15. Your child asks what’s for dinner, and you automatically reach for the bag of hyperal
    16. Your 2-year-old knows where all of the medical equipment goes, and how to use it
    17. Your child’s first word is a medical term
    18. You keep a bag packed at all times like your 9 1/2 months pregnant
    19. You can eat with one hand while you hold the barf bucket with the other
    20. Your child’s bedroom looks like a Toys R Us® store

Yard Sale

I want to go to BlogHer. But since tickets are like a kagillion dollars, I’m having a yard sale. I hate yard sales, they are way too much work, and you have to get up early. Two things I desperately hate, along with leukemia and chemo. I don’t like to haggle for shit, I say $1- you say ten cents sold to you because I don’t want to have to haul this crap back into the house with me.

The only highlight to me having to go though all my old junk is the Barbies. I had hundreds of Barbies and thousands of outfits for them, ***sigh*** I remember playing Barbies for hours on end, dressing them, cutting their hair, painting Kens feet black to look like he wore flip flops…memories…

Today was a very special day in the Kens house hold. In celebration of their adoption of Simone, they decided to take a new family portrait with the twins Celeste and Monet. Maybe I will keep these ones…

Meet the Kens! That’s Sven on the left and Freedrik on the right, their twin girls Celeste and Monet and the newest addition Simone. They are Austrian Olympic bronze medalists in the sport of curling; who live full-time in Croatia.

Please come to my yard sale, otherwise I may have to take the Kens family home with me. And those guys are bitches,they steal my shampoo and hog the hot water.

Because You Can’t Just Wish It Away

I feel like such a failure as a parent, on June 24, 2009 the doctors sent us home from the hospital with a healthy new born baby; and I couldn’t keep him that way. They trusted me, Gage trusted me and I failed them. I understand this is like one of the most  irrational thoughts on the planet, but I can’t help it.  I’m his mom and I am supposed to protect him, keep him safe. Yet every time he gets chemotherapy I am putting toxic chemicals into his body, that I can’t even throw in the trash because it’s so dangerous they need to be incinerated. I’m pumping this directly into his heart. His HEART!

The one question I have gotten asked at least once a day if not more since Gage was diagnosed with leukemia is “how do you do it?” or “I don’ know how you guys do it.” Really? Like I have a choice, I can’t twinkle my nose, fold my arms, and nod my head to make this go away. Trust me because I have wished, begged, pleaded and threatened the world to make my baby better and I can’t make him better. But truly I do what I have to do, I don’t have a choice. He hasn’t given up on me so I can’t give up on him. I will continue to fight for him, for the rest of his life.

When Gage was born, I made the decision to try and exclusively breast feed, it was hard, and it took a lot of work and dedication on my part, and lots of patience on the Hubs part. Thank goodness he has a lot of patience, because my breast pump was my best friend for nine long months. Which was how long I was able to nurse for. After Gage was diagnosed, I kept having this reoccurring  dream, that I was still able to nurse and the cure for his leukemia was my nursing him. I woke up and it was so real, I was lying on a cot in his hospital room, ready to cry because here was the answer, the cure to his leukemia! and I had it in me the whole time, literally, IN ME! But after I really woke up and looked at Gage, asleep in his hospital crib with tubes and wires hooked up to him, I realized it was all just a dream and I was back in Kansas again; but instead of Kansas I was in room 4114 on the fourth floor of the pediatric unit.

Sometimes I wish I could click my heals together and go back to the day we left the hospital back in June 2009. To be completely ignorant of all the hell we have been through. To never have seen my child almost die in from of my eyes. To not cry with my sisters every we time we talk about “that night”, because they should never have had to see their 14 month old nephew intubated. I hate the fact I had to call the Hubs at 11:45 at night telling him to get back to the hospital, because they needed to take Gage into surgery and they don’t know if he is going to make it. I don’t know how the Hubs can trust me after that, when I don’t even trust myself.

This was our first day home from the hospital back on June 24, 2009 we were so tired but so happy. I'd give anything to go back to that day.

An Almost Normal Day

Last week I had emailed Megan at the Pablove foundation, because I had questions about the True Pablove event. I really wanted to be able to attend but was unsure of going because of all of the people. So I emailed Megan asking if there was going to be a place for kids with cancer, just so they would not be around all of the people; in case somebody was sick. Megan emailed me back, saying unfortunately no, there would be no special accommodations, but that they’d love to have Gage and his guests come to the event as guests; and they hoped we could make it. Which was so nice if them, thank you so much!

It was so amazing to be able to spend the day outside with Gage, my parents, my bestie and her daughter. Gage had a blast! I really felt like he was a normal toddler for the afternoon. He got to meet Yo Gabba Gabba, listen to Gwendolyn and the Good Time Gang and decorate Valentine crafts; it was such an amazing day. It was easy to forget why we were there, that we were honoring the memory of a little boy who lost his fight with a bilateral Wilms’ Tumor, by trying to raise money to fund pediatric cancer research.

It really was such a great day, one I will remember forever and make sure Gage knows about it too. It was an almost normal day.

1-10

YOU KNOW YOU’RE THE PARENT OF A KID WITH CANCER WHEN…

  1. You carry a tube of Emla in your purse instead a tube of lipstick
  2. Kids with hair look kind of strange to you
  3. You can sleep anywhere, and anything that reclines more than 15 degrees looks “comfy”
  4. Your spouse asks what that sexy perfume is, and it’s Betadine
  5. You don’t realize the sharps container is on the kitchen table until half way through dinner
  6. You enjoy the drive at 3:00am to emergency because there aren’t any other cars on the freeway
  7. You can name all the equipment used on ER
  8. You can deaccess the patients on ER before the Docs do
  9. You hear a truck backing up and you think the IV is beeping
  10. You are so proud when your baby finally gets hair (and he is 8)!

*** I found this at this website, http://squirreltales.com/ I thought it was funny and thought I’d share.***

Good times

This is what we are doing today…


More Monday!

XOXO

Their Strength

So I have a secret. I read other mommy bloggers and the journey that is their kids leukemia. All. Day. Long. Much to the Hubs dismay, because this means I generally get nothing done. All. Day. Long. But I read their blogs to see if ours lives are similar, to know that I am not alone, that Gage is not alone, because even if I talk to the other moms in the clinic, it’s just not the same. I talk to those woman once or twice a week in the clinic, where these woman on the internet, who have no idea who I am. I read about them everyday, getting to know them, getting to love them. ***I kind of feel a little like a stalker, weirdo right about now***

I get strength from these woman, knowing that they have been through hell and back, and they have survived even if their babies don’t. I have cried desperate tears of pain, while reading funeral preparations for their babies. I have cried happy tears while reading posts written about when babies had their last chemo treatment, and got to go home for good, never needing to have another lumbar puncture or bone marrow aspiration again. I’ve gotten sick to my stomach at seeing the word of relapse, and praying and bartering with God or whatever divine being is out there to please never let me hear those words said in the same sentence as Gages name. I have found myself in these woman, and hope that someone is reading what I write and if they are going through what I have gone through that they get strength from me as well.

What I have learned from the majority of these blogs, is that not only do I have the most amazing health insurance, but the hospital we go to is fan-fucking-tastic. I have read about kids having to wait for five hours, before being admitted into a hospital room, or that when from the time Gage was diagnosed with leukemia to the day we knew the type of leukemia he had, acute lymphoblastic leukemia was a total of five days, which I guess is not the norm, because I have heard some places take up to four weeks for results. Those five days seemed like the longest of my entire life, I know I would have gone crazy if I would have had to wait a whole month. Did you know that some hospitals have cancer patients share rooms?! This has got to be the most absurd thing I have read so far! There are no good things about leukemia, chemo, or hospital stays but having our own room is a little, teeny tiny perk.

One of the terms I have heard over and over again has been a baby has “earned” his or her wings. Yesterday I read that Josiah has earned his angel wings, and I hate that term, because he should not have earned them so young. He should have gone to college, gotten married and knocked his wife up with eight babies. He should never had gotten sick in the first place. I hate that we can put a man on the moon, pick the gender of my next kid if I wanted to, or wear underwear that magically makes my waist and thighs two inches smaller; but we can’t find the cause or a cure for childhood cancer. The world truly does suck in that regard.