Tag Archives: failure

It must be the coke…

and I’m not talking about the passport to refreshment either. But come on. How the hell does Paris Hilton “sing” “act” get paid to make appearances at clubs, be a complete waste of space in general and still have time to tweet about her completely vapid life; and I can’t find time to write a blog post since going back to work??And, do not even get me started on not remembering the last time I got my eyebrows done. Oy-vey, where are the damn tweezers?

So I guess I should start off with Gage is doing fan-fucking-tastic. Have you ever realized that by just adding fuck to a word it will totally drive your point home. Like hi-fucking-larious or re-fucking-diculous. Ohmy-fucking-god Gage has leukemia. Thankyousweet-fucking-babyjeebus Gage is in remission! Point made.

So I am back to work. It is hard, I stand on my feet all day, I am tire. All. The. Time. The insomnia that plagued me when I wasn’t working has decided to stick around. I’m starting to get used to four hours of sleep each night. OK, I’m not. Temazapam is quickly becoming my newest bestie, along with xanax and prozac.

I find it is harder than I had anticipated telling people I see on a regular basis at work, where I have been for the last nine months. Obviously all of my co-workers know, but I deal with outside people all day long, a lot who know about Gagers existence; so of course people ask about him. I told one woman, and she started crying and going on and on and on, about how sad and unfair the world is. I ended up feeling bad! So now, I am very selective on who I tell about Gage. It’s not that I don’t want people to know. Hello! BLOGGING HERE! But it is so much easier telling you people; who I can’t see then telling a person standing right in front of me. I just can’t handle the looks I get.

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They Deserve a Chance…

So one of the many things I remember from the hospital, one that I would like to forget is when we would go down for surgery, ct scans, or ultra sounds the nurses would sit my adult sized ass in a CHILD SIZED WHEEL CHAIR! which totally is not what this post is about, but I just remembered this one time when trying to shimmy my way out I actually got stuck and they had to have someone help me out. Because my ass was not meant to squeeze into a pediatric wheel chair. UGH- embarrassing memories, thanks blog post.

Anywho, the other thing I remember most about those trips in the hospital was I would be in the mini wheel chair, and Gagers would be on my lap waving to everybody we passed. I wouldn’t at look anybody we passed in the eye ever, because I hated their pitying looks it was bad enough hearing the “oh, that’s so sad and poor baby.” Really? You totally think that is appropriate to say when I can hear you? It’s not comforting to me. In fact I want to scream “yes, this is fucking sad. But would you like to know what’s worse? Pediatric cancer research sucks.”

Did you know? The federal government has made only very modest investments in research through the National Cancer Institute (NCI). For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents. To us, and the families of the 35 children diagnosed with cancer each day, it is clear that much more needs to be done to ensure access to treatment and the opportunity to fully recover.

30 freaking cents, that is all Gage is worth to them. It truly is enough to make me want to march to Capitol Hill and shove this blog down their throats. To make them see pictures of Gage make them look at his face, hear his laugh, show them that he is one amazing kid. Make them love him like I do. I’d tell them to get their heads out of their asses and do something about childhood cancer research funding. Because every baby deserves the chance to grow old.

Ethan Deserves a Chance

Caleb Deserves a Chance

Gage Deserves a Chance

And so do the 12,500 children and adolescents in the U.S. diagnosed with pediatric cancer each year.

Leukemia. The New Normal

I haven’t been here in a few days. Sorry. It all just got to be a little over whelming, people have been calling and emailing me, questioning me about what I am writing. Am I sure I want to be putting so much of our lives out their for the world to see?

The answer? Yes, I want to write about it. I want you to know that even though Gage is in remission, I will forever live in fear of relapse. And that even though it has almost been seven months since Gage was diagnosed I still have daily anxiety and at least a couple of times a week I have nightmares. To add to my nightmare Gage has been having nightmares. I rush to his room because his screams are so scary and heartbreaking. I wonder if he remembers like I remember. I hug him and kiss him, and whisper in his ear, that it will all be all right, mommy is here and I love you so much. He always falls back asleep almost instantly, into that peaceful baby sleep, curled up on his belly with his diapered butt sticking up in the air. I usually will stay and pat his back, rub his chubby little cheeks, rub the curls on top of his head. Wishing our lives were normal.

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?