The thing - Fred - he is smaller

I haven't been posting much about Ty's tumor lately. They say "No news is good news," and they're right.

It (Fred) still measures 13x17cm but it is much smaller than the 31x25 it was at its biggest. We are grateful that his tumor is now the size of a large orange rather than the football it once was.

We celebrate each individual step towards improvement with the realization that it brings him closer to the end goal of kicking the tumor on its arse (pardon my french).

Ty is still sick when he sits in his wheelchair, so we are trying to ease him back into longer periods of sitting. He may even try to go to church this Sunday - we are taking it one day at a time. Thanks for all your prayers and thoughts and acts of service on his behalf. We are very blessed to have such wonderful family, friends and neighbors.

Speaking of neighbors, thank you for the surprise birthday lunch this week. It was so fun to visit with you and see your beautiful faces.

And speaking of friends, Montserrat has awarded me this-
I have really loved getting to know her through her posts - she takes wonderful photographs and has great ideas for summer activities. I think I'm supposed to let you know of 5 other bloggers who rock too. Forgive me if these bloggers have already rocked, but check them out

Sipping Hot Chocolate - Athena's photographs are spectacular, this one is my favorite
Birdie - search the archives, there are some great Avon stories in there. I wish I could look at life and write the way she does.
Elizabeth W - A new bloggy friend with a fun sense of humor.
One Woman's Cottage Life - A remodeling genius, check out her sidebar for pics of her cottage.
Angry Chicken - a very crafty blog, she also has a gallery called Tie One On that features aprons sewed by readers.

Just You and Me

Being the eldest of six children, a girl can't expect much one-on-one time with her dad. Especially when his work takes him away from home on travel five days a week for nearly nine of her growing up years.

If you imagine that this girl thinks fondly on those times when she had her dad to herself, you're right.

There was a girl, all of nine years old, dressed-up in her silky sage green dress and her hair drawn up into a bun. There was a father with her attending a piano concert of a very young girl - a child prodigy she must have been. I'm sure it was her father's way of inspiring his daughter to practice more. But I remember it was just you and me all dressed up for an evening together.

An unused servant's quarters transformed by red light into a photographer's darkroom. Father showing daughter how to make chemical and paper magically bring captured memories to life. Teaching his daughter the ins and outs of shutter speed, light meter readings, and f stops - entrusting her with his camera and sharing a passion for snapping the everyday moments of life. But I remember it was just you and me working by the soft glow of a red bulb.

A special weekend of two dads and two daughters straining eyes, scanning forests, sighting doe and fawn and buck. A new pair of brown leather cowboy boots, her only ones ever. Moments of independence riding down the mountain alone on ATVs with her friend, freezing, giggley and mud-splattered. Gray skies whispered their snow secrets, but I remember it was just you and me coming home from a week of deer hunting on Halloween night.

A brown Toyota Corolla so old that it drank leaded gasoline like lemonade, the sheepskin covers giving new life to cracked vinyl. A father coaching his daughter in the nuances of driving a manual transmission. Ever patient, except when it comes to matters of speed, and unable to take the snail's pace and trepidation any longer, pushes his hand firmly, yet gently on daughter's knee sending foot down to meet accelerator to meet floor. Finally, faster. But I remember it was just you and me in daddy daughter driving school.

And now just six months ago this daughter, now a grown woman and a parent herself, sits with her father and takes counsel over a plate of hospital nachos. You watching me watching my boy, and understanding that these hurts have got to be gone through with that other Father - God. There is never enough time for father daughter moments these days, but I remember it was just you and me in the solitude of a late night hospital cafeteria having a heart to heart about watching children "grow" their spirits in times of trial and challenge and telling me you would always be there for me.

Thanks dad, Happy Father's Day. I love you.

Traditions...it's the stuff memories are made of

Today, I've been a bit under the weather. The kind that keeps you to your bed and has you wanting to call in a Mommy sick day.

As I was laying in bed, it brought to mind the sick days of my childhood. Specifically those I had when I lived in the Philippines.

Things may have changed since the 70s, but television programming consisted of anime cartoons, japanese soap operas, and the occasional Grizzly Adams or Here's Boomer on Sundays. As a result, my sister and I spent much of our time playing outdoors or reading books. Our mom was very supportive of our reading addiction, and every time I was sick in bed it seemed I had a new Nancy Drew mystery to read.

She always fostered a love of reading in us, and when we moved back to America the reading tradition continued. We would gather and tuck ourselves into the corners of my parent's water bed and mom would read aloud to us from chapter books. She even read to us in the car on family road trips. I can't say that I ever remember a time when my mom didn't have a book on her nightstand or perhaps in her purse to read when she got the chance.

Even though there are plenty of diversions available and much more variety in tv programming, the tradition of read-alouds now continues in my own family.

In the summer we gather on the deck and the children snuggle into patio chairs, or we all lay on the tramp together - everyone rolling into the middle next to me, while I read to them by flashlight and they look out into the stars.

When the weather turns colder, they tuck themselves into the comfy corners of the family room sofas and draw, work at handiwork, or just wrap up in a blanket and listen.

Sometimes, just for fun, I pick a book just for them and read to each child alone in their room - cuddling up with the younger ones. I like to think I am passing on the "love of reading" torch to my children and hope that when they become parents, the tradition will continue in their own families.

I wrote this post as my entry for Scribbit's Write Away contest. If you'd like to enter, this month's theme is Traditions. (You have until midnight Saturday).

Friday Night Fun

Mr. Triumph and I went on an honest-to-goodness real live date with dinner and everything tonight.

An angel of a neighbor brought dinner and stayed to play with the kids and be with Tyler. That is big. When you have a child going through something like chemo, and they happen to have other disabilities as well, you can't just call one of the teens in the neighborhood to come and 'sit' for you. I admit, I was scared to leave Ty. I'm not sure why, but I've convinced myself that he can't do without me. She did a marvelous service for us, and I feel very refreshed and ready for the coming week. Thank you sweet neighbor!

It was so nice to sit down at a restaurant and enjoy dinner in the lovely weather on the outdoor patio. (hmm, could I fit another preposition into that sentence?) We thought about going to a movie because it's been so long since we've seen one, but we both wanted to visit the book store. This tells you what nerds book lovers we are. We had a wonderful evening.

I thought I'd just browse in the home section and stumbled on this book - an interesting concept.

Then I began looking for a book I'd heard about only recently, "Nourishing Traditions" and struck paydirt. I look forward to marking it up with my notes. I am very hopeful that Caralee will resume teaching her classes on using this book.

We have increased Ty's Goji consumption to 6 ozs three times a day. It seems today that his tumor is a bit smaller. I am forcing myself to wait until tomorrow to measure it - I want to hold on to the hope for tonight, at least.

We are busy using this next week to explore alternative medicine even further. I am not one to sit around and wait for the doctors to come up with something. The Tumor Review board is going to discuss Ty's tumor and treatment options as well as review his CT films again. We hope to have some answers in the next week or two.

In the meantime, we're doing whatever we can to get momentum back on our side and let this tumor know we mean business.

Okay, so it's not S-a-t-u-r-d-a-y Night and we didn't go dancing, but I couldn't help myself. It's one of Ty's favorites.

Aha!

We have the first results back on Ty's blood cultures. They found Staph in both blood cultures - the one drawn from his port and the one drawn from his arm. The good news is that I think this means he can keep his port in, the bad news is that now we have to get rid of it.

The results for the drug sensitivities should be back on Friday. He tried to have a fever again today, but it didn't get very high before it broke. He is starting to thrash a bit again, but it's not as bad as it's been.

We've redesigned the blog a bit to be a little easier on the eyes. You can now look up entries by labels as well, please forgive all the edits. I recommend that you start here (at the bottom) if it's your first time reading.


Another thank you I need to extend is to my neighbor, who sometimes serves as my own personal Ask-A-Nurse. She has always been very kind with her time and expertise, and manages to help me feel at peace with how things are going. Thank you Leann for answering my many questions.


Did I mention how great my neighbors are? One of them brought me this piece of sunshine today. Thank you!

Amazing People

I'd like to thank the Academy. ....

Sorry, wrong crowd. Forgive me for sounding like I'm gushing, but Wow! there are so many amazing people who make this easier to deal with, maybe not easier, but I feel more able to be there for Ty because of them. If I don't mention you specifically, please blame it on "hospital brain" and know that I couldn't do it without you.
My husband and the kids have been awesome through this experience. He stays with Ty at the hospital on weekends, has become the backup nurse (lots of IV meds experience), he has been the glue that holds it all together, and holy crap! he practically shaved his head to show support for Ty. I will definitely have to post before and after pics. Kids, I love you and miss you when I'm not there - if only I could be in two places at once.

I need to tell you about three wonderful women who help me: Terry (my mom), Mo (my aunt), and Wendy (my dear neighbor). They help with getting Ty ready, watching the girls so I can get some sleep, and being here when I have to be away with Ty. They cook, they tidy up, they do what needs doing, but most importantly, they love my kids and make it possible for me to do what I do. Thank you, I know my family is well-cared for and we are so blessed to have you in our lives.

Erin, who works with Tyler for his schooling. This has been a most interesting school year and not at all how we thought it would be. She has made it as great an experience as Ty could have, considering he spends most of his time laying down in bed. She does "school" with him even at the hospital. We love you, and so does Ty. There are several other people through school that have bent over backwards to help Ty: Principal, Susan (USDB), Jane (teacher), Corrine (vision), Starla (Speech), Jodi (PT), Nate (OT), Kaye and Justin (District). Thank you for making this hard year better.

Barb, another dear neighbor, has arranged so many meals to feed my family when I'm with Ty at the hospital. Wow, the few meals I've been able to sample have been delicious. I would love to get recipes from everyone. Thank you for coordinating everything.

Jake (Wendy's son), for bringing his guitar to the hospital and playing it for Tyler. I sat Ty on my lap and helped him to strum the guitar as Jake held it. Tyler kept reaching out to touch the strings and make them vibrate with his sound - again and again. It is the most fun and alert I have seen him be in the hospital. Thank you for brightening his hospital stay, and remember - none of that slow stuff, let's jam!

The neighbors who have donated their time, their cooking skills, and their disposable cookware. First, may I say "Yum!" - second, one year, my family may actually get to cook for you. We look forward to one day being on the giving end of dinner time. In the meantime, thank you so much for filling my family's tummies with warm, delicious food.

The anonymous people who made Christmas special for us this year. We had the "Twelve Days of Christmas", our stockings filled, a Secret Santa bearing gifts, and a Christmas Jar shared with us. Please know that this helped our children feel of your love and concern for them. Thank you, we are so touched by your thoughtfulness and kindness. We are so fortunate to know such lovely people.

The friends who call and check on us, the church family and extended family members who pray and fast for Tyler and our family, the many coworkers who show their support for Ty and the children who tell me they pray for him and ask how he is doing. They are the most precious people - my five-year old nephew told me I should just pray with Ty and ask Heavenly Father to please make him feel better and his fever will go away. Oh, to have so much faith.

Last, and certainly not least, the many doctors, nurses, staff and techs who have provided great, loving care for Tyler. There have been many and I wish I could remember all their names. We will miss seeing Lacey, she has moved to another floor, but we know there are many wonderful caregivers who love Tyler and have his best interests in mind. Thank you for remembering that even though he can't speak, he still needs to know what's going to happen next. Sharon, we'll see you next time - remember to wear your dancing shoes.

Two more - Apple. What would we do without his Ipod? Thank you for all the minutes we forget that Tyler is dealing with something very serious - because we are all laughing and dancing to his favorite music.
And commenters! Thank you for checking in and leaving your comments, they are much appreciated and make me feel all cheery and warm inside.
Thank you everyone!

Pulling all-nighters

When I was little, staying up all night seemed like such a cool thing to do. When I was about 14 (?) some of my cousins were in from out of town on New Year's Eve. This is the year we lived next door to my Grandma B.

The adults stayed up and visited at her house, and the tween-teen cousins hung out at my house watching a Three Stooges/Laurel & Hardy marathon. Those were the days. Staying up all night, talking, eating, and just enjoying the bonds of friendship. Hah! It was only because we didn't have to get up with babies the next morning.

Ty has a fever tonight. It just camped out at 100.8 (underarm-so add a degree). It didn't go up, but it didn't come down either. After three hours of that, the doctor told us to bring him up to PCMC. I though it might be more convenient if I took him in closer. Silly me.

Always pick driving an hour to an experienced children's hospital over driving 5 minutes to one that's um, well... not so much. I think they tried their best, but it was pretty awful. The room was dirty, and the bedrails on his bed had someone's old yogurt or something on it. Hallelujah for baby wipes!

I used to be very impressed with this hospital and have received good care from them in the past. I don't think I'm going back there unless someone needs stitches - that they can do and you're in and out in about 45 minutes.

I should've gone with my gut and just watched him at home. There is something going on with him, I just can't figure it out. He keeps thrashing about in his sleep. It's almost as if he keeps doing the "cadaver jerk" thing. You know where you dream you are falling off of a cliff or out of bed and your body gives an involuntary jerk, waking you up.

His labs came back and they were great, so now I'm confused. What is going on here?
Hematocrit 29
WBC 8.9

He does have some blood on the side of his big toe, but the doc said it was no big deal and shouldn't be causing the fever. They drew blood cultures and took a "sample" but we won't know anything for about 48 hours. Nothing much else we could do - they ended up giving him an IV fluid dump of 1/2 a liter and then a dose of Rocefen. I brought him home so he could sleep in the comfort of his own bed after 4 1/2 long hours.

Mr. Triumph had to bring his medication from home because their hospital pharmacy no longer carries the drug he takes. What? I've never run into that before. And the tech had no idea about sterile technique; it's okay that I screwed up when collecting a sample and touched something I shouldn't have because "Hey, those are sterile gloves, right?"

I know I sound crabby, but that's because I am. After all, it's 3:30 in the morning and I'm not looking forward to waking up in 3 1/2 hours. Who said getting to stay up all night was a cool thing to do? My head hurts.

Gritching is over. (I think that word is a made-up family word that means really grumpy whining).

I am very grateful to be a mom, and it's nights like these that make me appreciate my own mom even more. I was fortunate enough to have my mom there when Tyler was born. She got to see him fight his way here and peek out.

We have always been close, even when I was being a stinker (I can't believe she loved me through all of that) and it seems we are even more so now. We have shared a lot these past two years.

She has helped me so many times, there is no way I will ever be able to make it up to her. She has always been a remarkable example to me in serving others. I don't think she realizes just how much she does for people. I want her to know that I realize it and I think she's wonderful! I watched her lovingly care for both her parents at the end of their lives. Even now, there are so many ways she serves others.

Mom, I love you. I don't know how I'd pull it all off without your support. Thank you for being my mom.