Tag Archives: port

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.

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!!!

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?

We Just Needed a Drink

When Gage was first in the hospital, I would not leave the hospital; seriously you could not get me to leave. I was afraid of what could happen if I was gone, and not able to be there with him. I didn’t trust anybody for me not to be there, not the family, not the nurses and sadly enough not even the Hubs. But gradually after about a month I started to go out with the Hubs once Gage was asleep we would tell the nurses we were going to Wendy’s when really we would head out to this little dive bar in the parking lot next door to the hospital. We’d sit silently not talking to one another, he drinking the house special beer and me a bloody Mary. Lost in our thoughts and emotions.

As a married couple the Hubs and I needed those nights at the bar, just to sit and be alone outside of the hospital, where nobody knew who we were and what Gage was going through. I mean we slept, ate, showered, lived at the hospital for like three months last year; and when we slept it was in separate cots. Not very romantic or conducive for a successful relationship, I am going to be completely honest with you people, because if I can’t be honest with 10,000 of my closest friends, then what am I doing here?

I wasn’t sure if my marriage would survive Gages treatment. I blamed the Hubs for not being with me when Gage was diagnosed, because it was a Monday afternoon he shouldn’t be at work. He should have been shopping at IKEA with me, then at the doctor’s office getting the most devastating of my life. Instead he was making a living for his family to live on, how dare he! I resented the fact that he went to work for those first few weeks, even when he wanted to be with us, and I demanded he go work. Gage didn’t need both of us at the hospital, going crazy with anxiety and fear; go work. I didn’t see that he was slowly killing himself because he was staying at the hospital, not sleeping and then getting up at 5am to work and not get back to our room until 9pm that night. All I saw was he got to leave, he had a “normal” life outside of the hospital; and I resented him for it. I pushed him to leave, and yet I resented it!

We got into mad, crazy yelling fight in the hospital. When I say yelling, I mean whispering loudly so the nurses can’t hear us, and quickly shutting up as soon as a nurse walked in to give Gage medication and change his diaper. Oiy- those poor nurses, the awkwardness of it all, I get so embarrassed just thinking about. None of those nurses get paid well enough to have been subjected to some of the looks we shot at each other those three months in the hospital. Those rooms echo, too! So I am sure they heard every word we said. No matter how quiet we tried to be. I said the most hateful things to him, while we were in the hospital. Things I wish I could take back, and never have said. Things I don’t think I have ever apologized for, things to this day I wont bring up to the Hubs because I am so ashamed of myself.

This was the man I married, the same guy I promised to love and honor, in sickness and health, good times and bad yada yada yada. And the first real hardship in our married life together and I freak the ‘eff out, on the one person who was giving me the most strength from anybody. Who for the last seven years has let me get my way in every argument, never told me no I couldn’t do something or buy an absolutely unnecessary item, I sure as hell didn’t need. He has always been there for me, during the good, the bad and the ugly loving me and supporting me; and I couldn’t do the same for him.

The bottom line is, this has been the hardest six months of my life as a mother and more importantly as a wife. But I love my Husband and if Gage can fight cancer and survive then we can fight to make our marriage work. I think coming to that realization has been what has saved us. Six months later our marriage is still on shaky ground, but we are slowly building our family back up, this time stronger than ever. I don’t know a lot, but the one thing I do know is I love him more and more each day.

 

Ready For Anything

I don’t think that I will ever breath easy again. The panic attacks are back with a vengeance and I can’t control them. I don’t see things that have happened but things that could happen. Since Gage was diagnosed back in August of last year, we have had to be prepared for the worst. And by worst I mean I have his funeral planned out.  I know nobody wants to hear this but it’s truly been my way of coping with his leukemia. Sitting nervously in the waiting room at three o’clock in the morning not sure if he was going to make it out of surgery, I prepared myself. What Gage would wear, what the Hubs and I would wear, the colors. I knew then that no matter what since Gages life was such a joy and celebration to us, his funeral would be the same. A party in his honor, a celebration of his life.

It’s with a cold detachment that, when I think of it all, almost like it’s not happening to me. Like it’s not my baby. We all tend to think because he is doing so well right now, that he will continue to do well. Which is what I am begging for, because I truly do not know what I would do, if anything were to happen to him. But that can all change at the drop of a hat, he can end up sick and in the hospital, or worse. His life is just so unpredictable right now, as a family we don’t take a single day of Gage for granted. Which means he is going to be so spoiled because we can’t seem to say no to him, or take away his bottle.

 

An Almost Normal Day

Last week I had emailed Megan at the Pablove foundation, because I had questions about the True Pablove event. I really wanted to be able to attend but was unsure of going because of all of the people. So I emailed Megan asking if there was going to be a place for kids with cancer, just so they would not be around all of the people; in case somebody was sick. Megan emailed me back, saying unfortunately no, there would be no special accommodations, but that they’d love to have Gage and his guests come to the event as guests; and they hoped we could make it. Which was so nice if them, thank you so much!

It was so amazing to be able to spend the day outside with Gage, my parents, my bestie and her daughter. Gage had a blast! I really felt like he was a normal toddler for the afternoon. He got to meet Yo Gabba Gabba, listen to Gwendolyn and the Good Time Gang and decorate Valentine crafts; it was such an amazing day. It was easy to forget why we were there, that we were honoring the memory of a little boy who lost his fight with a bilateral Wilms’ Tumor, by trying to raise money to fund pediatric cancer research.

It really was such a great day, one I will remember forever and make sure Gage knows about it too. It was an almost normal day.

Their Strength

So I have a secret. I read other mommy bloggers and the journey that is their kids leukemia. All. Day. Long. Much to the Hubs dismay, because this means I generally get nothing done. All. Day. Long. But I read their blogs to see if ours lives are similar, to know that I am not alone, that Gage is not alone, because even if I talk to the other moms in the clinic, it’s just not the same. I talk to those woman once or twice a week in the clinic, where these woman on the internet, who have no idea who I am. I read about them everyday, getting to know them, getting to love them. ***I kind of feel a little like a stalker, weirdo right about now***

I get strength from these woman, knowing that they have been through hell and back, and they have survived even if their babies don’t. I have cried desperate tears of pain, while reading funeral preparations for their babies. I have cried happy tears while reading posts written about when babies had their last chemo treatment, and got to go home for good, never needing to have another lumbar puncture or bone marrow aspiration again. I’ve gotten sick to my stomach at seeing the word of relapse, and praying and bartering with God or whatever divine being is out there to please never let me hear those words said in the same sentence as Gages name. I have found myself in these woman, and hope that someone is reading what I write and if they are going through what I have gone through that they get strength from me as well.

What I have learned from the majority of these blogs, is that not only do I have the most amazing health insurance, but the hospital we go to is fan-fucking-tastic. I have read about kids having to wait for five hours, before being admitted into a hospital room, or that when from the time Gage was diagnosed with leukemia to the day we knew the type of leukemia he had, acute lymphoblastic leukemia was a total of five days, which I guess is not the norm, because I have heard some places take up to four weeks for results. Those five days seemed like the longest of my entire life, I know I would have gone crazy if I would have had to wait a whole month. Did you know that some hospitals have cancer patients share rooms?! This has got to be the most absurd thing I have read so far! There are no good things about leukemia, chemo, or hospital stays but having our own room is a little, teeny tiny perk.

One of the terms I have heard over and over again has been a baby has “earned” his or her wings. Yesterday I read that Josiah has earned his angel wings, and I hate that term, because he should not have earned them so young. He should have gone to college, gotten married and knocked his wife up with eight babies. He should never had gotten sick in the first place. I hate that we can put a man on the moon, pick the gender of my next kid if I wanted to, or wear underwear that magically makes my waist and thighs two inches smaller; but we can’t find the cause or a cure for childhood cancer. The world truly does suck in that regard.

Life, Not Like I Imagined

Some days I really feel like I am barely staying afloat. The last couple of nights I have been having trouble sleeping. I lay awake for hours staring at the wall above my bed, not seeing the wall itself but a movie reel of those first nights in the hospital. Me holding Gage in my arms as a nurse tries without luck to find a vein to start an IV as Gage slips in and out of consciousness. I see his pupils start to dilate, and his mouth starts to foam. I hear the nurses asking me to please go sit in the parents waiting room, since it was starting to get crowded with all the nurses and doctors rushing in. I’m walking the hallways, again. In my nightmares I’m just walking a hallway, lap after lap after lap. CODE PINK is blaring out of the hospital loud speaker and I can’t stop screaming. This is my hell and I have been here almost every day since August 2, 2010.

These last few weeks Gage also has been suffering from nightmares, I hate that he can’t tell me what he is dreaming about. When I go in his room to check on him when he cries out at night, his sobs of terror are heartbreaking; nothing can comfort him. The look in his eyes kills me, because I wonder if he is remembering those nights, like I remember those nights. I had hoped that he wouldn’t remember any of this, that he would be too young; so far it looks like that may not be the case. I hate those nightmares for him more then I hate those nightmares for me.

I am constantly waiting for the other shoe to drop. Our lives have been such a roller coaster ride I keep praying, hoping, and wishing that we can keep on this positive healthy path Gage has been on. But he has a little cold right now, and I get up like eight times a night to make sure his cold hasn’t turned into a fever, I count his coughs every hour to make sure they don’t get worse. His poor doctors must hate the fact I have every single one of their phone, pager, and fax numbers on speed dial. Because, let me tell you since Saturday I have been calling, paging, and faxing at least three times a day. “No, Mom the cough is not in his lungs. It’s just a cold. He’s fine.” How do they know, since they haven’t seen him in a few days? We go back to the clinic for another dressing change, hopefully he will have improved by then that way we can have an easy, stress free weekend.