Tag Archives: chemo

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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Will The Real L.P. Please Stand Up

If you look back to a post from a couple of weeks ago titled L.P. I complain about Gage having to go the clinic for a lumbar puncture, and how it was going to totally suck. Well Gage never got the L.P. that day, his blood counts were not high enough for him to under go heavy ass doses
of chemotherapy, so it was postponed for a few days. He didn’t pass then either, ok…odd. Gages doctor wanted to try again in three days, we put our foot down though, no we want to wait for at least a week.

There is so much stress when getting ready for a lumbar puncture. Because Gage does get sedated, he is not able to eat or drink anything for six hours before the procedure. Which is no fun for anybody involved. I make a conscious decision to not eat or drink until Gage can, and let me tell you I am usually ready to eat my foot by the time we get the ok for a bottle; so Gage must be absolutely starving.

Then the Cyclophosphamide (which is also known as cytoxan) which is just one of the four three or four chemo’s he get that day, can burn his liver, we have to constantly be keeping him hydrated the day before. We never let his bottle or sippy get empty, the same goes for at night. I am up every hour until 4:00a.m. refilling his almond milk, changing diapers, and freaking out that I’m not going to wake up and he drinks something after 4:00a.m. It truly does make for a long exhausting day.

Finally after three failed attempts at chemotherapy Gage had high enough blood counts to actually get shit done. Thank you baby jeebus, because I do not want to have to go through another bone marrow aspiration, to see if horror of horrors the leukemia is back. I did mention the cytoxan burning his liver, right? Well I forgot since that can happen L.P. chemo days are usually eight hour days, because the doctors give Gage I.V. fluids, for three hours before. Still with no food and for at least ninety minutes after his last dose of chemo, with strict rules to keep him hydrated and to change his diaper at the signs of first pee or poop; to avoid a horrible diaper rash.

So since Gage got his lumbar puncture, he has had chemotherapy injected into his Hickman line, for four days straight. He is such a trooper and nothing seems to be able to get him down. I can’t wait for the day that I can say,”do you remember when Gage had to go through chemo, and we never thought we’d be finished?” That’s the day I am living for now.

The Chemo Kid

L.P.

Gage has a lumbar puncture today. It’s not going to be good, so far he has spent the last 45 minutes screaming and we are only in the car! He has just finally fallen asleep. I hope he stays that way for a while, especially since he can’t eat until after his procedure is done today.

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.

Jovita

I did something very indulgent yesterday. I hired somebody off of craigslist to come to my house and clean up Gagers room, because even though we have been in this house for… OMG, three months as of today. The most I had gotten done in there was getting his large furniture put together, clothes and toys were always on the floor. Unpacked boxes, hangers, empty target bags I hide from the Hubs so he doesn’t see how much I actually buy ***target is like mom crack, totally addicting*** and a hospital overnight bag. Just in case. But on the floor it all was, taunting me.

Everyday I would go in Gagers room and then walk right back out again, promising myself and the Hubs that I would clean it tomorrow. Promise. Finally after three months of midnight diaper changes and almost spraining my ankle over all the crap on the floor, I took action and her name is Jovita. She is an angel in a denim jumpsuit and knock off Sketcher Shape ups. It took her two and a half hours and forty dollars but it was more than worth it for me, seriously it was like a weight was lifted off my shoulders. I swear Jovita is just like the miracle worker the rest of my day was totally amazing, my hair looked super shiny, my makeup looked flawless, and I fit into my skinny jeans!

OK, that last part was a total lie. My skinny jeans don’t fit and I don’t see them fitting for a long time. I’d like to blame the girl scouts for that. Them and their stupid cookies…thin mints sandwiched between dark double chocolate chip galato. Yumm-O.

Honestly though, sometimes a person just needs to do what is right for them. Jovita was exactly what I needed. Firstly, because I am super lazy much to the Hubs dismay and secondly, because I finally got to put Gagers new race track carpet on the floor in his room instead of rolled up against a the wall. He totally loves it.

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!!!