21. You ask your CPA if bribe toys are tax deductible
22. You correct the doctors spelling on the chemo meds
23. You can read the doctors prescription word for word, and are asked to decipher it by the pharmacist
24. You know medical terminology better than your family practitioner
25. There are 4 new Mercedes in the doctors’ parking lot due to your child’s payments
26. The pharmacy sends your family Christmas presents
27. You get excited when there is a 15% off sale at the pharmacy
28. The local needle program comes to your door
29. You have a syringe in your purse and you’re not a diabetic
30. You have more meds in your cupboard than food.
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
Posted in Uncategorized
Tagged cancer kids, chmotherapy, clinic, delayed intensification, Gage, hickman line, hope, hospital, leukemia, life, love, lumbar puncture, maintenance
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
Posted in Uncategorized
Tagged Gage, happy valentines day, hubs, life, live, love, lukemia, trust, valentines day
11. Your new bathroom trash can has “Hazardous Waste” written on it (recycled sharps container)
12. You can maneuver a double pole with six boxes and a kid riding, on a tour of the hospital, and make it back to the room before the low-battery alarm sounds and the kid has to pee
13. You realize you’ve been home two weeks, and you’re still measuring I’s and O’s
14. The nurses stop responding to the IV alarm, knowing you’ll fix it anyway
15. Your child asks what’s for dinner, and you automatically reach for the bag of hyperal
16. Your 2-year-old knows where all of the medical equipment goes, and how to use it
17. Your child’s first word is a medical term
18. You keep a bag packed at all times like your 9 1/2 months pregnant
19. You can eat with one hand while you hold the barf bucket with the other
20. Your child’s bedroom looks like a Toys R Us® store
I want to go to BlogHer. But since tickets are like a kagillion dollars, I’m having a yard sale. I hate yard sales, they are way too much work, and you have to get up early. Two things I desperately hate, along with leukemia and chemo. I don’t like to haggle for shit, I say $1- you say ten cents sold to you because I don’t want to have to haul this crap back into the house with me.
The only highlight to me having to go though all my old junk is the Barbies. I had hundreds of Barbies and thousands of outfits for them, ***sigh*** I remember playing Barbies for hours on end, dressing them, cutting their hair, painting Kens feet black to look like he wore flip flops…memories…
Today was a very special day in the Kens house hold. In celebration of their adoption of Simone, they decided to take a new family portrait with the twins Celeste and Monet. Maybe I will keep these ones…
Meet the Kens! That’s Sven on the left and Freedrik on the right, their twin girls Celeste and Monet and the newest addition Simone. They are Austrian Olympic bronze medalists in the sport of curling; who live full-time in Croatia.
Please come to my yard sale, otherwise I may have to take the Kens family home with me. And those guys are bitches,they steal my shampoo and hog the hot water.
I feel like such a failure as a parent, on June 24, 2009 the doctors sent us home from the hospital with a healthy new born baby; and I couldn’t keep him that way. They trusted me, Gage trusted me and I failed them. I understand this is like one of the most irrational thoughts on the planet, but I can’t help it. I’m his mom and I am supposed to protect him, keep him safe. Yet every time he gets chemotherapy I am putting toxic chemicals into his body, that I can’t even throw in the trash because it’s so dangerous they need to be incinerated. I’m pumping this directly into his heart. His HEART!
The one question I have gotten asked at least once a day if not more since Gage was diagnosed with leukemia is “how do you do it?” or “I don’ know how you guys do it.” Really? Like I have a choice, I can’t twinkle my nose, fold my arms, and nod my head to make this go away. Trust me because I have wished, begged, pleaded and threatened the world to make my baby better and I can’t make him better. But truly I do what I have to do, I don’t have a choice. He hasn’t given up on me so I can’t give up on him. I will continue to fight for him, for the rest of his life.
When Gage was born, I made the decision to try and exclusively breast feed, it was hard, and it took a lot of work and dedication on my part, and lots of patience on the Hubs part. Thank goodness he has a lot of patience, because my breast pump was my best friend for nine long months. Which was how long I was able to nurse for. After Gage was diagnosed, I kept having this reoccurring dream, that I was still able to nurse and the cure for his leukemia was my nursing him. I woke up and it was so real, I was lying on a cot in his hospital room, ready to cry because here was the answer, the cure to his leukemia! and I had it in me the whole time, literally, IN ME! But after I really woke up and looked at Gage, asleep in his hospital crib with tubes and wires hooked up to him, I realized it was all just a dream and I was back in Kansas again; but instead of Kansas I was in room 4114 on the fourth floor of the pediatric unit.
Sometimes I wish I could click my heals together and go back to the day we left the hospital back in June 2009. To be completely ignorant of all the hell we have been through. To never have seen my child almost die in from of my eyes. To not cry with my sisters every we time we talk about “that night”, because they should never have had to see their 14 month old nephew intubated. I hate the fact I had to call the Hubs at 11:45 at night telling him to get back to the hospital, because they needed to take Gage into surgery and they don’t know if he is going to make it. I don’t know how the Hubs can trust me after that, when I don’t even trust myself.
This was our first day home from the hospital back on June 24, 2009 we were so tired but so happy. I'd give anything to go back to that 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.
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Love Heals Gage 