Tag Archives: leukemia

Diaper Rashes and Teething

Way back when, on our first hospital stay when Gage was on like SEVEN different antibiotics for almost every hour of the day beacause he almost died; he came down with a lovely little diaper rash. His diapers were changed often, but due to chemotherapy and antibiotics he still came down with a rash. There was no preventing it.

Please note when I say lovely I really mean the ugliest, most painful, open sores bleeding and blistering type of diaper rash. The kind which took three nurses to hold him down, when changing him. I came to dread diaper changes, choosing to leave the room more often then not, it was too hard hearing him scream out in pain. Because there was nothing I could do, nothing I would say was soothing or calming to him.

It wasn’t until begged for something, anything for the pain that Gage was finally given darvocet. Which he got just in time too, because the Kid started to get his all his teeth popping in at once. Adding insult to injury, in my opinion. But thankfully he was able to go through that time with little to no more pain. Finally, after about three weeks his diaper rash finally went away.

But ever since that horrendous experience I am almost fanatical about changing his diapers. I can’t go through that again, if I even see a hint of redness on his pasty white butt, I lather it in ILEX and vitamin A & D ointment; and say a quick prayer that it doesn’t get worse. I also let him run around naked, not caring if he pees on the floor, that cleans up better then a rash does. I do draw the line at pooping on the floor though, for that I rush him to the potty, so I guess I am also potty training him at the same time. BONUS!

So I guess what I am saying is: when life handed me lemons, I found the tequila and started taking shots. You know best out of every situation and all that shit.

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Wee Ghosties

I haven’t mentioned this to anybody yet, because I don’t want to sound crazier then I already am, paranoid. OK, I’m kind of nervous about this next sentence, but here is goes. I think Gage sees dead people.

Dead serious, ***no pun intended***. But do you remember the time in the hospital when Gage almost died? Well, I think that since he almost “crossed over” he was told it was not his time, and to go back. Thank you baby jeebus he listened too. I am not writing this to be funny, I swear. I truly and honestly believe with everything that I have, that Gage has become that creepy kid from The Sixth Sense.

He holds these long conversations, with absolutely no one. Conversations, with wild hand gestures and long pauses that make you believe someone or something is talking back to him. His voice rises and falls in excitement and anger. He offers his “friends” his sippy or snacks. He doesn’t talk to his living friends the same way he talks to these “friends” his whole demeanor changes, he is not shy with them or hesitant in any way. I think he feels safe with them, like a kindred spirit or something

Oddly enough non of this bothers me either. If he does have friends that are no longer in this realm, good for him. Good friends are hard to come by now a days, take ’em where you can get ’em Kid.

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

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.

Wordless Wednesday: We Be Rollin’


“We be rollin'”

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!!!