Monthly Archives: February 2011

31-40

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

30. You have more meds in your cupboard than food
31. You can read your son’s chart better than his nurse
32. You look like you’re tan but it’s really Betadine stains
33. You and your hubby get matching stress tattoos for fun
34. You start teaching your daughter the parts of her body, and you point to her chest, and she says that’s her port
35. None of the security guards on the pediatric floor ask for your ID anymore, and you’re on first-name basis with the operating room staff
36. Medical students ask to borrow your notes
37. Your toddler refuses to sit on Santa’s lap because he’s too germy from all the other kids
38. You wrap presents and packages with medical tape
39. Your main source of nutrition comes from aspirin
40. Your child is more familiar with CT scan & bone scan pictures than the portrait studio!!!

Wordless Wednesday: So Many Meds So Little Time

11-20

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.

The Stinker

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?

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.

 

Wordless Wednesday: This Is Spinal Tap

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