Tag Archives: chemo

We Just Needed a Drink

When Gage was first in the hospital, I would not leave the hospital; seriously you could not get me to leave. I was afraid of what could happen if I was gone, and not able to be there with him. I didn’t trust anybody for me not to be there, not the family, not the nurses and sadly enough not even the Hubs. But gradually after about a month I started to go out with the Hubs once Gage was asleep we would tell the nurses we were going to Wendy’s when really we would head out to this little dive bar in the parking lot next door to the hospital. We’d sit silently not talking to one another, he drinking the house special beer and me a bloody Mary. Lost in our thoughts and emotions.

As a married couple the Hubs and I needed those nights at the bar, just to sit and be alone outside of the hospital, where nobody knew who we were and what Gage was going through. I mean we slept, ate, showered, lived at the hospital for like three months last year; and when we slept it was in separate cots. Not very romantic or conducive for a successful relationship, I am going to be completely honest with you people, because if I can’t be honest with 10,000 of my closest friends, then what am I doing here?

I wasn’t sure if my marriage would survive Gages treatment. I blamed the Hubs for not being with me when Gage was diagnosed, because it was a Monday afternoon he shouldn’t be at work. He should have been shopping at IKEA with me, then at the doctor’s office getting the most devastating of my life. Instead he was making a living for his family to live on, how dare he! I resented the fact that he went to work for those first few weeks, even when he wanted to be with us, and I demanded he go work. Gage didn’t need both of us at the hospital, going crazy with anxiety and fear; go work. I didn’t see that he was slowly killing himself because he was staying at the hospital, not sleeping and then getting up at 5am to work and not get back to our room until 9pm that night. All I saw was he got to leave, he had a “normal” life outside of the hospital; and I resented him for it. I pushed him to leave, and yet I resented it!

We got into mad, crazy yelling fight in the hospital. When I say yelling, I mean whispering loudly so the nurses can’t hear us, and quickly shutting up as soon as a nurse walked in to give Gage medication and change his diaper. Oiy- those poor nurses, the awkwardness of it all, I get so embarrassed just thinking about. None of those nurses get paid well enough to have been subjected to some of the looks we shot at each other those three months in the hospital. Those rooms echo, too! So I am sure they heard every word we said. No matter how quiet we tried to be. I said the most hateful things to him, while we were in the hospital. Things I wish I could take back, and never have said. Things I don’t think I have ever apologized for, things to this day I wont bring up to the Hubs because I am so ashamed of myself.

This was the man I married, the same guy I promised to love and honor, in sickness and health, good times and bad yada yada yada. And the first real hardship in our married life together and I freak the ‘eff out, on the one person who was giving me the most strength from anybody. Who for the last seven years has let me get my way in every argument, never told me no I couldn’t do something or buy an absolutely unnecessary item, I sure as hell didn’t need. He has always been there for me, during the good, the bad and the ugly loving me and supporting me; and I couldn’t do the same for him.

The bottom line is, this has been the hardest six months of my life as a mother and more importantly as a wife. But I love my Husband and if Gage can fight cancer and survive then we can fight to make our marriage work. I think coming to that realization has been what has saved us. Six months later our marriage is still on shaky ground, but we are slowly building our family back up, this time stronger than ever. I don’t know a lot, but the one thing I do know is I love him more and more each day.

 

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)

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.