Tag Archives: hope

I Live in Hope.

I have anxiety. Everyday, it seems to get worse. I read a story of someone’s baby who didn’t make it and I hold Gage and pray that’s not us. I wonder if what happens when we put his mediport back in will his candida come back? Will we catch it in time if it does? Oh my god,  what if he relapses?

For a long time I was able to get a hold of my panic attacks and anxiety  and then one of Gage’s doctors said ”we were lucky to catch the candida as quickly as we did last time, because a lot of the times, we lose the young ones before we get to them”   ….   ”but you’re doing a great job, job keep doing what you’re doing”    …

The thing is I don’t know what I am doing. I’m barely holding on some days. I feel like I am being held together with string and one false move and I’m going to shatter and break into a million pieces. I’m not able to fall asleep at night anymore, it seems every time I close my eyes I’m watching a movie of every complication Gage has ever had. I hear it all, I smell it all. The fear washes over me and it wont go away.

I took a CPR certification course yesterday, and as I sat there watching the training DVD,  I felt the anxiety start to creep up on me. My shoulders tensed up the blood started rushing to my head. Oh god, please don’t let me start crying, I don’t want these people, these strangers to think I’m crazy. As I sat there I hear CODE PINK  (code pink at our hospital means that a child is in distress) being paged over the hospital paging system. I went back to that day. The day we came so close to losing him. I sat there, a I started to sweat, my hands were shaking so hard. I was afraid, I was going to have to leave. But I NEED to get CPR certified! Thankfully, the instructor calls for a break, and I can call the Hubs, who reassured me, that Gage is still here,  still alive and that everything will be fine.  And for a moment at least, I’m ok.

Later that day I went to my Holy Place. Target  and aimlessly walked the isles, eating popcorn and drinking a watermelon slupree basking in the fact, I was by myself. A very rare thing. I found this:

I have to...

Of course I bought it. I don’t know what I’m going to write in it yet, but I keep it with me in my purse and I take it out and stare at the words, needing to see them.  Needing to know that what they say is true.

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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.

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.

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!!!