No moment is guaranteed – live for today. #TDL
Sometime in September 2010.
I am so glad Gage was born in June, mainly because it is almost six months from his birthday to Christmas, and he always gets enough clothes to last those six months and more. I almost never have to buy him stuff, it’s nice. The truly best part of the six months between holidays? ***yes, Gages birthday is a holiday in our family*** The pictures. I have thousands of pictures of Gage, crappy, blurry snapshots on my camera and phone, pictures I’m glad I didn’t delete because I looked fat or my eyes were closed. These are precious memories, I will keep and cherish forever. But as fun as my amateur pictures are, the ones I love, love, love the most are the ones that http://jennbeephotography.wordpress.com takes. Theses pictures are birth announcements, Christmas cards, and birthday invitations. She is such an amazing photographer and a pretty fantastic person too! I’m so grateful to know her and call Besties.
Some out takes from this years Christmas card.
His 19th birthday was yesterday. He is the only adult in the pediatric oncology unit. His chances for survival are better with the kids then the adults, so here he stays with the “babies” but he doesn’t mind, he smiles and waves as we walk by his room for the millionth time; nods his head when he recognizes something in Gagers that makes them part of the same team. The I’m too young to die team, the I’ve been through hell and back, but I’m still here fighting team.
He wanted a lap-top computer for his birthday he knew it was expensive but hoped maybe if it was a combined birthday/Christmas gift his mom could afford to get it for him. Even though he is an adult he is still just a kid who really wants something cool for his birthday, but as his birthday grew near he knew his mom could not afford a new lap-top computer for him, but that was ok because he was going home after 57 days in the hospital and that is a way better birthday present anyway.
Little did he know the nurses who work here are the best nurses anywhere, and had taken up a collection weeks ago to get the only adult oncology patient in the pediatric unit the only thing he asked for on his 19th birthday. A lap-top computer. I love our nurses, they are truly amazing people. They go out of their way to make their patients and their families happy and comfortable.
Happy 19th Birthday Big Guy.
So I have noticed a smell hovering around Gage lately. A nasty, disgusting, OMG what is that? I’m going to vomit kind of smell. I swear I have given him sponge baths while here. But good God, what part of his body is that coming from? He hasn’t pooped in a week, maybe it’s starting to ferment in his body? Seep through his pores maybe? Nope, none of that. It’s his hand with the IV in it. ***bleck, so gross*** When I finally figured out where the stink was coming from, I quickly paged the nurse, wondering what the hell was wrong? Has it turned gan-greeny? Is it going to fall off? Oh Jeebus, an amputee?? Ok, I can deal with that. After our nurse was done laughing her ass off at me, she told me no, his hand was not going to fall off, it’s the tape and sweat and maybe food trapped in there; a weeks worth in fact. Hence the smell. There is no point in changing the dressing now, as Gagers is going into surgery this afternoon. But I guess I now know why people crinkle their noses when we walk by. Yuck, he keeps trying to pet my face with that hand, I can actually taste it if I try to breath through my mouth. ***Ewww.***
Gagers keeping busy, since his surgery will be tomorrow.
We are waiting. Waiting to be put on the surgery list for anytime this afternoon, we aren’t picky about what time; just please operate today. We are hoping to be able to get a broviac inserted today. I’m kind of grossed out by the thought of the broviac, mainly because it is an IV that constantly hangs our of his body, but also since he wont be able to have a proper bath for like four months, since we have failed to pit a picc line in Gages arm, a broviac is the only option left to us since putting a port back in is out of the question right now.
The San Diego Zoo brought in animals last week, and Gagers loved them! His favorite was this parrot, he liked his bright colors and that the bird could say words! We love the Zoo and that they bring in different animal every couple of weeks, for the kids in the peds unit. It brightens up their otherwise boring days.
We still aren’t sure when we are going home, we just hope it’s before Christmas. I think subconsciously I knew we’d be in the hospital the whole month of December. How else can you explain the fact I had ALL of my Christmas shopping done by the last day in November? I just have to wrap everything, which totally isn’t a lot, especially considering the Hubs and I have decided not to do Christmas gifts for each other.
I’m sorry this post is all over the place today, we don’t have much going on these days; just a waiting game…
Gage has a new friend. I wish he didn’t have this new friend, because we met him in the pediatric unit here at the hospital, he may have a tumor. I wish we’d never have to meet this kid, or other kids like him. It’s too hard watching the parents wait, for the devastating news, hoping, praying everything they are being told is wrong and that really they are just having a nightmare and they are going to wake up soon. It hurts because when I see them, I see us when we were first diagnosed. The fear in their eyes, the tremble in their voice as they talk about what’s going on.
It’s much easier once you’ve been diagnosed, then you can get your game plan going. The look in the families eyes suddenly change with the knowledge they get, your number one priority is now getting your kid better. You also realize it’s now your job to educate people on what you’re going through, to let them see your struggle; as you fight for your kids life.
I guess meeting these families is the best thing for us, it makes me feel not alone, somebody else is going through the same thing that we are. I am so glad Gage has met a new friend.
Please at around 11:00am pacific standard time today ***12-13-10***our new friend Ethan is going in for a biopsy, please pray for him and his family. Pray, the surgery is quick, and that they get good news and that the tumor is benign; pray to give them the strength they will need in the coming months.
When the pediatric unit is full of sick kids Gage has to wear a mask in the halls.
It’s The Masked Boy!
There’s not much to do in the hospital, we walk laps. Ok, I walk laps Gage gets carried, it doesn’t matter that he has lost four pounds since we first checked in eight days ago this kid still weights twenty-five pounds and he is so heavy! My arms and back are killing me. So we walk laps, Gage rides in the little tykes car for laps, and gets pulled in the wagon for more laps. Laps, laps, laps. So why have I gained three pounds since checking in? I’m doing all the work! When we are in in our room, Gage wants to be held and I don’t mean sitting in a chair rocking him back and forth held, I mean standing and swaying being held. I need a back brace!
On our nightly walk yesterday, I heard a mom who every-time she passed by me should would complain about her daughter having to share a room and how unfair it was, blablabla. Gage has his own room. After our 327th lap I had enough listening to her complain and went back to our room, but left the door open only to hear the same mom say “look a private room, must be nice.” I felt like telling her, I wish we were able to share a room*** no I don’t*** but my kid and every other kid who has their own room all have a terminal diseases! We don’t have that option to share, your kid has a broken arm, not cancer. I know your daughter is in pain and I am truly sorry about her that, but you don’t know what you’re talking about; so shut up. Instead of telling her any of this, I just got up and shut the door.
I’m sorry for not posting anything yesterday, but my wireless card isn’t working, and the nurses took out the computer with Internet access; so I do everything on my iPhone. I fingers, hand, and wrist hurt. I feel like a twelve year old boy.
Gagers is still in the hospital, still no food, the good news is he has finally stopped asking for something to eat or drink. Though two days ago I did catch him just in time as he tried to stick a piece of food in his mouth, from the food cart “empties” ***gross*** Gage is also sleeping better during the night, he just happens to get up at six in the morning so I am exhausted!! No, that still does not give you the right to tell me that if I don’t know you.
As you know Gage had his port taken out on Monday, and it sucks because we our stuck in the hospital, no trips to the outside like I have said before. The absolute worst part? They pulled all of his labs from the port, it’s too hard and scary to try and get blood from the IV in his hand, it can collapse and go bad. Now they need to stick him in his little bruised arms, where the veins are so messed up from seven tries in one arm and six in the other of failed PICC lines. The lab refused to do it this morning, so our nurse ***love her*** took Gagers to the treatment room to use the vein finder, she found one in the top of his hand to use. His arms are safe, for now.
Gages left arm after seven attempts in the last few day to put a PICC line in. Poor kid.
Posted in Uncategorized
Tagged Gage, hospital, leukemia, live, love, pancreatitis, port, surgery
Gage came out of his port removal surgery just fine. Me I was a complete and utter fucking reck the whole time. We were told it was going to be a quick surgery like 30-40 minutes, thank God because I didn’t have enough Xanax with me to last all day and I was mayor of anxiety-ville. Seriously, I thought I was going to need to be seen by one of the many docs walking by. The third floor OR waiting room is my own personal hell. Oh! and let me tell you what the best part of the 30-40 minute surgery was; it lasted TWO HOURS!!! During that two hours I kept thinking, would they announce a code pink in the OR third floor? How would by tell us Gage didn’t make it? Why he didn’t make it? For some reason my mind didn’t gravitate to the positive, I didn’t see me kissing his cheeks as he woke up, of giving him his first bottle***yes, I know 17 months is too old to have a bottle; I don’t want to hear it*** I didn’t see Troy and I talking to Gagers in post OP. I saw scary things, dark things as each minute passed and nobody came out I saw in my minds the docs coming out telling us they were sorry, and they did all they could, I saw us collapsing on the floor not knowing what to do, I saw us kissing him one last time; I saw that night back in August. Then I saw the docs walk out and say he was doing fine and we could go back now, I almost did collapse on the floor, and then we were kissing his cheeks as he woke up, giving him a bottle, and talking to him.
The best news Gage made it out of surgery and he is doing fan-fucking-tastic, he had no complications with the removal of the port or anesthesia. He did have a problem with the PICC line, his veins are just to small and too deep, so they weren’t able to access him; even with a vein finder and an ultrasound machine. We may be transported to another hospital in the area to try to get the PICC line in or we may try to put it in a vein by his ankle***dry heave*** somehow it seems worse at the ankle. We are not sure what our oncologists want to do yet, all we know is since we have a standard IV in place we are stuck at the hospital, no Christmas parties at the San Diego zoo with the other oncology kids, no Ronald McDonald house party either; I guess I didn’t realize how the port really mobilized us.
Oh and to finish off our day, we were told the pancreatitis is back. No food or drink for Gage for Jeebus knows how long, fun shit; huh?
Gagers after surgery, not sure what the hell is on his arm; but refusing to give up his precious apple juice.
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Love Heals Gage 