If you can see this video, click here.
Gage went in for another lumbar puncture. He came out without having got it done, because his ANC was still too low. But whereas last week when his counts were about 200 which means he is at a high risk for infection his counts today was 695 just 55 “points” away from being pass-able. So now we go back again, next week with fingers crossed and a quick prayer, that Gage will pass and we finally get into the maintenance portion of the chemotherapy treatment.
If for some crazy reason that he doesn’t pass and his ANC is not up to 750 by May 9 or his counts go down, Gage would be scheduled for a bone marrow aspiration for the following week. Because at that point there should be no reason for his counts to have not improved. So as long as they go up soon, I will be happy.
Gage and I at the clinic this morning. Waiting, always waiting.
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.
Posted in Uncategorized
Tagged acute lymphoblastic leukemia, anxiety, cancer kids, chmotherapy, fear, Gage, hope, leukemia, live, love, panic attacks
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.
Posted in Uncategorized
Tagged birthday, blogher, broviac, cancer kids, Capitol Hill, chemo, chmotherapy, clinic, death, delayed intensification, failure, fear, Gage, healing, hope, hospital, life, live, love, lukemia, National Cancer Institute, NCI, panic attacks, port, surgery
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?
Posted in Uncategorized
Tagged bath time, broviac, cancer kids, candida, chemo, chmotherapy, clinic, CT scan, death, delayed intensification, failure, fear, fun, Gage, healing, hickman line, leukemia, life, live, love, lukemia, maintenance, normal, pancreatitis, panic attacks, picc line, port, sick, surgery, trepidation, trust
Gage started delayed intensification last Thursday. It was a long time in coming, six months in fact. Some days, I never thought we’d get to this point, and now that we are here I am scared of all the complications that can happen. I take his temperature like every hour just to make sure he doesn’t have some random fever. I call is doctors because his cough is back, and oh my gosh is that a rumble in his chest, did the cough move to his lungs? I have an overnight bag packed just in case we have to go to the hospital at the last moment.
The Delayed Intensification “road map” looks like this:
This is what Gage is going to be subjected to in the up coming weeks, he should also be receiving Pegasparaginase (PEG), which is two shots in his legs during week one. But he had the allergic reaction to the last shots of PEG he received, which in turn caused him to get pancreatitis and the ulcers on his pancreas that landed us in the hospital for three weeks before Christmas. So thank you Baby Jeebus, no more PEG shots!
Since starting delayed intensification, Gage has been so cranky. He is on seven days of dexamethasone, and seven days off for a couple of weeks and not only is he getting adorably chubby, since he is eating like a little piggy but he is getting not so adorably bitchy, as well.
His nick name from the hospital is back, we call him Ragin’ Gage. He screams and fusses all day long and as soon as Daddy comes home, he is all sunshine and lolly-pops. I have actually called the Hubs at work, in tears begging him to come home, because there is nothing I can do to fix Gages tantrums. I know it’s the medicines fault that he is acting this way, but after seven hours of screaming fits, all rationalization is out the window. Though the highlight to being at delayed intensification is once we are done with this round of chemotherapy we head into maintenance, which is kind of like the light at the end of the tunnel.
This is what Gage looked like last time he was on the dexamethasone. So cute and chubby! (sorry the picture is so blurry it was taken on my iPhone on zoom)
Posted in Uncategorized
Tagged broviac, cancer kids, candida, chemo, chmotherapy, Christmas, death, delayed intensification, failure, Gage, healing, hickman line, hope, hospital, leukemia, life, live, love, maintenance, pancreatitis, panic attacks, picc line, sick
Happy Valentines Day to the loves of my life. You both bring me so much love, joy, and light to my life. I love you both more then mere words can say.
i carry your heart with me
(i carry it in my heart)
i am never without it
(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)
I fear no fate
(for you are my fate, my sweet)
i want no world
(for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart (i carry it in my heart)
by: e.e. cummings
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.
Posted in Uncategorized
Tagged broviac, candida, chmotherapy, death, delayed intensification, failure, healing, hickman line, hospital, leukemia, life, live, love, panic attacks, port, sick, surgery, trust
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.
Posted in Uncategorized
Tagged candida, CT scan, fun, Gage, hospital, leukemia, live, love, normal, pablove, port, yo gabba gabba
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.