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Tag Archives: chemo
YOU KNOW YOU’RE THE PARENT OF A KID WITH CANCER WHEN…
21. You ask your CPA if bribe toys are tax deductible
22. You correct the doctors spelling on the chemo meds
23. You can read the doctors prescription word for word, and are asked to decipher it by the pharmacist
24. You know medical terminology better than your family practitioner
25. There are 4 new Mercedes in the doctors’ parking lot due to your child’s payments
26. The pharmacy sends your family Christmas presents
27. You get excited when there is a 15% off sale at the pharmacy
28. The local needle program comes to your door
29. You have a syringe in your purse and you’re not a diabetic
30. You have more meds in your cupboard than food.
Bath time in our house is a HUGE event. For Gage. Not for me. Gage loves baths, mainly because he only gets them once a week. Then he is only in the bath for like fifteen minutes tops, with no splashing. While during the entire bath I am freaking out, begging Gage not to splash, and telling him to “sit down before you fall down.”
Normally Gage would be able to take a bath for as long as he wanted to, heck I have had to refill the tub with hot water half the time, he can play in the water for hours. That all changed in December when, after careful consideration and tons deliberation Gages doctors decided to take out his port. Because no matter how hard we tried, and how much medication we pumped into him, Gage kept getting candida in his blood. So with fear and trepidation, we sent Gagers back into surgery to remove his port and replace it with a temporary hickman line. Which is a pain in the butt, not only because I have to drive to the hospital every three days to get the dressing changed, because it’s an open site. But also the site can not get wet. Hence the excitement of bath time.
I have concocted my own special, Gage is gonna have a bath dressing. Which involves saran wrap and surgical tape. Poor Kid he hates this, mainly because every bath he gets, I use half a roll of the saran wrap and a whole roll of surgical tape. But Gage gets his bath, the nurses get a clean smelling baby for clinic the next day, and everybody thinks I’m a good mother for making it possible to Gage to bathe; so everybody wins.
I was begging Gage to give me the bucket, since he is on steroids right now I have to ask nicely and make it seem like he totally wants to give me the bucket. Or he might go Linda Blair on my ass, and throw him self backward in the tub, his head might start spinning; and throwing up chemo medicine on me. Come to think of it, he does that when I don’t get his food to him quick enough too. But he did give me the bucket, nice and calm like; and so I gave him an extra fifteen minutes in the tub. Ain’t I just the nicest?
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.
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:
- day 1: Itrathecal Methotrexate
- day 1: Vincristine
- day 1: Doxorubicin
- day 1-7: Dexomethasone
- day 8: Vincristine
- day 8: Doxorubicin
- day 15: Vincristine
- day 15: Doxorubicin
- day 15-21: Dexomethasone
- day 29: Cyclophosphamide
- day 29: Thioguanine
- day 29: Cytarabine
- day 29: Itrathecal Methotrexate
- day 29-32: Cytarabine
- day 29: -42: Thioguanine
- day 36-39: Cytarabine
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.
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
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.