We made two Christmas cards this year. We were totally on the ball, especially considering we have been in the hospital the whole month of December; due to complications from Gages leukemia.
But without further adieu, here are our cards!!
Pictures by http://jennbeephotography.wordpress.com
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.
“Should we do it now?” oh God, do what? I thought, what now? We’d already done a blood test, pulled from his finger; that had hymolized before it got to the lab. What next? “Mom, Dad, Gage can you come out here please?”***yes, the nurses call us mom and dad*** when we came out of our room they gave us this…
Totally better than a finger prick blood draw!! Gagers LOVED it! He loves the bell, he loves the peddles! He loves it all! Thank you so much to Liam and His mom Nancy H. ***I try not to use names, but I’ve never met these people, so I think I’m ok, I hope*** Who thought to brighten up a little boys life, during his hospital stay. They didn’t just bring Gagers a gift they brought us a beautiful picture frame and toys for all the kids staying in peds right now. Thank you! Thank you! Thank you! And a huge thanks to the “Scale” family, who happen to be my Besties too, for bringing us the cutest table top tree, and gifts for Gagers and us as well!! But most importantly thank you, for driving down to visit us, and always thinking of us! We love you guys so much and are blessed to know you!!
One of the Besties came by this week and totally redecorated Gages hospital room, he loves it!
Thank you to the BEST Besties ever! We love you guys tons! Also thank you so much to OUTNUMBERED for the most thoughtful gift of a massage! It was amazing, they came here, I didnt have to do a thing and I swear I totally forgot where I was for those 45 minutes! So thank you!! XOXO
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Love Heals Gage 