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.
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.
Posted in Uncategorized
Tagged cancer kids, chmotherapy, death, Gage, hickman line, hospital, leukemia, port
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
Posted in Uncategorized
Tagged cancer kids, chemo, chmotherapy, Gage, hickman line, leukemia, lumbar puncture
So I went to Bloggy Boot Camp, last Saturday and ZOMG! It was amazing, I learned so much. I learned about blog branding from Amy Bradley-Hole, who writes over at The Bee Dot. I now know that vlogging is super important, from Mary Burt-Godwin who is the star of Mama Mary Show. Did you know that Kathy B from Mamas Losin’ It, is super skinny and doesn’t look like she could have three kids? But that also she is a great writer. I got to sit at the same table with her at lunch, I also kinda embarrassed myself by being so hungry that I ate my lunch and dessert in like ten minutes flat. It was yumm-O.
It was such a great day, even if the weather was gloomy and we had to eat lunch in doors. We moved tables after every speaker in order to make the most of our day and socialize with our fellow writers. Which made it easier on me because lets face it, those of you who know me, know that I am socially awkward and I get very uncomfortable talking with people I don’t know. I end up chipping my nail polish off and eating too much the latter I ended up doing. From each table we moved to I met the coolest, nicest bloggers.
I met Dead Cow Girl whose business card reads: A Dominatrix has an IVF baby and moves to the ‘burbs. Hilarious Hijinks Ensues. I am now addicted to her blog. I want to know everything she does in her day to day life as a dominatrix, because HELLO, where else are you gonna find this shit out at?! Do you know what a helicopter is? No? check out her blog and you’ll find out. Because I had NO IDEA. (mom, dad, do not go on her blog)
Then there was Trisha from 3 Four and Under. Holy Hell, this girl is crafty! I want to have girl babies just to buy things she makes, she is like the cooler version of Martha Stewart as far as I am concerned. She also has some cute kids too!
There was Michelle who sell properties by the beach, and started blogging like a month ago over at Life Buy The Beach. A person can spend hours looking at the pictures of houses she has on her blog, I love it!
Ashley from Little Miss Momma, had me all blushy and embarrassed when she told me her reaction to reading my blog. She is newish to the blog world, meaning she has only been writing since February 2010 but already she get 200,000 visitors a month! I know, can you believe that, 200,000?! But when you check out her site you’ll totally understand why. She crafts, shows pictures of her adorable son W and gives cool discount codes to some awesome shops.
There was so much more to my day at Bloggy Boot Camp and I learned way more then I ever dreamed I would. I am so glad I chose to attend.
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.
Posted in Uncategorized
Tagged acute lymphoblastic leukemia, chemo, Gage, life, love, lumbar puncture
This is my absolutely nothing to do with Gage post. This is my Wine Wednesday post, something a cool group of mommy bloggers write every week and they invited me to join in the fun. Of course this week and last, said mommies would be on vacation or Hubbies have just gotten out of the hospital, so I am the only writer this week. The pressure is on, I may need to double up on my Xanax today.
So the wine I chose for my first ever Wine Wednesday was Funf German Riesling. Funf, meaning fun in German. I basically chose this wine, because the label said it was “An easy wine to get along with” and since I’m a cantankerous bitch, I figured I better buy this wine, and the price was right $9.99 from Sprouts. So I called two of my Besties and settled on a day for wine tasting.
So I made the two hour drive “up the hill” for our little tasting. We decided not to eat a big meal with our wine, because everybody knows liquid calories are way better then solid calories. ***In my humble opinion at least*** So instead we ate cheese, apple slices, salami and crackers. Keep it simple stupid…
Our Pretty Wine Setup
When you buy a wine for $9.99 you get what you pay for. First off the biggest disappointment for me was it was a SCREW TOP! My favorite part of the wine experience is taking the cork out! So lets add another $14.99 I spent on a wine opener and $4.99 wine stoppers at Target. This is not looking good so far. My first sip of the wine…
Me: Not good, not good, not good…
Bestie: Are you kidding me? This stuff is good!
Me: Maybe it will taste better with fruit or something…
This wine had a fruity sweetness to it that after getting to the fourth sip I didn’t mind so much, but I still wasn’t sure I would finish my glass so I started to dip my apple in my drink. Much more yummy, but unfortunately I could not finish my glass, the wine was just too sweet for me. Though I would recommend it to anybody who likes a sweet wine.
Thanks for letting me participate in your Wine Wednesday Ladies! XOXO
For more Wine Wednesday check out:
Life With Baby D
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You Know You’re The Parent Of a Kid With Cancer When…
41. When you use the term six-pack, you are talking about platelets, not Budweiser®
42. Your child is going on a field trip and wants to know if you have signed his “remission” slip
43. Your child can easily pronounce “Neuroblastoma,” “chemotherapy” and “coagulate,” but has trouble pronouncing the state you live in
44. Your child uses Legos® to build “MRI” machines
45. You don’t have to ask, “What’s that mean” to the previous 44 items
46. You hear yourself say the words, “I’ll buy you anything you want” at least twice a month
47. You know you are the friend of a family with a child with cancer when you call to check the chemo schedule and ask, “How will her counts be on, say, the 11th?” before you schedule a birthday party
48. You have been asked by more than 25 friends and family members, “So, when is his next treatment?”
49. Your four year old’s critique of the medical student’s examination skills is the same as the supervising physician’s
50. A younger sibling identifies a nipple as “my port site”
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Love Heals Gage 