Tumor Update!

Ty had his 1 year tumor follow up appointment today. Basically the scan showed no change (neither increase nor decrease) in tumor size. Which is really great news - although a little disappointing, as it is the first time since last March that the tumor has not shown shrinkage. This is only a little worrisome because I have been having to cath him more lately. That is exactly what happened during the 6 months leading up to us discovering the tumor. The doc is very much encouraged that his tumor is stabilizing and we are scheduling to have his chemo port come out during the surgery in August.

I froze a screen shot from today's scan so you can see overall just how far he's come. Today the tumor measured 11.6 x 8 x 2.6 cm - it is outlined in red, and that's roughly the size of two pancakes, stacked. When you look at scan images, imagine the patient is sitting or lying facing you (so your left is his right, and vice versa) The white highlighted portions are parts of his pelvis/hips and spine.

In February of 2007, it measured 18cmx16.5cmx11.5cm - also outlined in red, and that's about the size of a bowling ball (or a very round NFL football). At this point, his right kidney was freaking out and causing him to have high blood pressure - think 179/97 and he had to go on medication to block the signals from his kidney. His internal organs were smooshed over to his left side, and it made him very uncomfortable and nauseous. Poor thing, he could only lay down at that point. Finally, the chemo kicked in when we switched types, and after four cycles it had already showed significant shrinkage.

Here's hoping next year holds even better news!

It's Official

I am old. Ty is old. Ty is tall (5'2"). My arms are not what they used to be or rather, Ty is not the light, tiny thing he used to be.

I can no longer just pick him up and carry him where ever. Mostly it's the rod in his back, but he is also a young man and heavy. The wheelchair is my new best friend, I have to use it even for short distances, putting him in there to haul him downstairs for a shower, to the cot on the deck, or back to his room for the night.

It really bothers me not to be able to just pick him up and go where I want to quickly. Instead, it takes an extra 5 minutes (I know that's not really very long, but in mom-time it feels like hours). I am not a patient person by nature, I like to be busy doing - not busy getting to the point where I can maybe start doing soon.

One of friends found herself in a similar situation and just kept right on lifting her son until her shoulder rebelled and had to be repaired via surgical means. Of course, I should learn from her experience (my back is trying to tell me to listen), but I remain, as ever, convinced of my invincibility.

If only I had those super powers of strength, endurance and bending time to my will that I've always wished for.

I would actually settle for just two more arms. That's not to much to ask for, is it?

The latest

Ty is dealing with an infection, one that is supposed to be relatively easy to cure. But for now, he is tired and uncomfortable.

We have no idea how it developed, but thankfully it should be much easier to fix than the one he had during chemo.

The World is at Your Fingertips

A little cross-posting here, sorry.

Yesterday, I was able to help (in a small way) representatives from the State Schools for the Deaf and Blind to simulate a deafblind experience for the peer tutors at my son's school. About 3 or 4 years ago we were able to do this for his entire elementary school of 750 students and a couple of news reporters.

The tutors were split into two groups - sighted guides and deafblind individuals. To make the students deafblind, they each put in foam earplugs, donned an eye band and eye mask and topped it off with headphones. The sighted giudes were asked not to speak during the simulation to aid in the deafness of the experience. While it isn't possible to make them completely deaf and blind - they were able to get a taste of what it feels like. You might want to try this sometime - my kids have all done it. Try eating a meal like this or getting ready for bed, it's not as easy as you might think.

For those of you who don't know, my son has significant hearing and vision disabilities, and since most of these students work with him we decided to show them a little bit of what it's like for him. They were given tasks to accomplish that they had never seen or felt before. Minimal assistance and no instructions were given to them.

They had to rely on their hands (and other senses) to figure out what to do, and just when they were finished their work was taken apart for them to do over or else put away. This sort of thing can happen a lot to people with disabilities. People (parents included) who work with these individuals some times get wrapped up in the goals they are supposed to be accomplishing, and the personal achievements and relationships can be lost or put on the back burner.

I asked the kids how many of them used to play Legos, and then followed up with asking if their creations were ever destroyed by a sibling or when they were in the middle of a project - did their mom tell them to put it away. I wanted them to realize that it's a universal feeling to want to share what you've done with others.

Some of the students were led around the school and some were taken outside (and rained on a bit). They were also left alone for about 30 seconds - 1 minute. Some of the deafblind students did not know why they were left alone and began feeling around 'looking' for their sighted guide. At one point, two blindfolded students found each other and each thought the other was a sighted person. Then one of them grabbed the hand of the other and began walking. It took them a few seconds to realize that neither one of them could guide the other (I'm sure there's a parable/metaphor in there somewhere). It was intriguing to watch.

They were given food to eat, some of it was unceremoniously shoved into their mouth and some was given to them to explore before eating. Random loud noises sounded in their ears, their arms and faces were brushed with feathers or baby wipes without and warning.

All in all, it was a very 'eye-opening' experience for those involved (my appreciation to the staff at the school for making it possible). It's a bit tricky to debrief the junior high crowd - they are not the most communicative bunch, but all of them acknowledged that it was frustrating to have things happen to them without any way of knowing what was coming next. We talked about communication and sign language.

I know that most of them felt a real impact and new appreciation for those with sensory disabilities.

Castaways on Cancer Island

More botox for Ty and still none for me - they are so stingy with that stuff! He had his port flushed (4 pokes in one day and he didn't complain a bit). He also didn't experience any nausea - and that was wonderful for both of us.

In other news, the baby is still coughing (and puking due to coughing so hard and long), but the doctor's office has assured me that she's not contagious now that she's finished her antibiotics. Strangely, I remain unconvinced - if she's still coughing, aren't those particles of contagion being flung about in her immediate vicinity?

****
On Sunday, two women came and presented to our church/ward about including people with disabilities. They were from the state school for the deaf and blind - we have 4 disabled males in our neighborhood and all but one have lived here from the beginning. Two of them are considered to be deafblind (although they are quite different in their abilities and in their deafblindness - they both, however, have some comprehension of spoken speech). As mothers of children with disabilities, it has been harder to watch our boys grow older and less included in the youth activities, but we realize it has also become more challenging to include them.

I don't know the answer to helping these boys become a part of their church family. He had a helluva year last year and I don't know how it could've been much different, but the other boys, especially the one turning 12 soon, could be more actively included. I think of the mother of that 12 year old, of how capable he is and yet how socially vulnerable he is. Junior high is hard enough for "normal" kids, I can't imagine how it will be for him.

I do know that our neighborhood has an opportunity before them to stretch, to put themselves out of their comfort zone and be a support system for that boy and his family - I hope we do it.

During that presentation, I silently cried my eyes out. I didn't think I would, but the thought kept coming to me that if Ty had been one of the other boys in the neighborhood going through the same struggle with a tumor on the rampage, the response would have been different. There would have been visits from friends, from adult youth leaders, neighbors even. It breaks my heart to think that people didn't know what to say to him and so they said nothing. They didn't know what to say to us, and so they said nothing. And so for a year and a half, we hung on by our fingernails.

Don't get me wrong, there were numerous anonymous acts of kindness and service performed for our family. Bits of I don't know what to do, so here is ____ (a plate of goodies, money!, some christmas cheer) were left on our doorstep. A little part of me is sad that I hadn't done my part to make his impact felt more keenly in our church family. I know how great and wonderful my son is, but I don't know that I've helped others to see that, to feel that. So, when he went missing from life for about a year and a half - it seemed no one knew he was gone. It felt that way for me too - I don't think I've made an impact in my neighborhood, at least not one that could be felt when I went missing too. It was a sort of a Dickensian moment for me during that presentation.

The realization hit me that it's not enough to be his mom, to serve him - there are still other people out there. Instead of turning inward and focusing more on my family, I suppose I should've maintained some aspect of serving others outside the microcosm of our home - it would have been soul-feeding and may have kept me grounded in the larger perspective of life.

I used to think of myself as a social person. I genuinely enjoy the company of others and hearing about the joy in their lives (sometimes other people's joy can be a lifeline), but people tend to feel guilty about their relative good fortune and that means they tend to withdraw as well. I don't really feel dramatic in saying that this last year has been a deserted island for us; we have been cancer castaways who've suddenly found a life raft and been plunked back down into civilization.

In our absence, things have changed; our children have felt it too. After adapting ourselves to life on the "island" and necessarily eating with our fingers for so long, suddenly we've a plethora of silverware from which to choose. The weight of a spoon or a fork is awkward in our hand, and it feels easier to keep using our fingers. Returning to a more social way of life is just as foreign.

But this time, I had better make it count for something.

Nekkis

So tonight the baby is doubled over coughing uncontrollably while she's trying to eat a snack before bedtime and my son says, "Yep, she's got the Whooping (as in pertussis)."

She completely stops coughing, turns and looks at him and says, "I am not poopy!"

Oh my goodness, we couldn't stop laughing.

This same brother just got his braces Wednesday morning. I asked the baby to look at him and tell me what was on his teeth. Her answer? Nekkis! (as in necklace)

I wonder if she got confused and thought braces were bracelets. And from there to necklace isn't a far jump. For what they're costing us, there ought to be a diamond solitaire in there somewhere! (and seriously, I am gonna tear myself away from here and start hanging out here).

My whole life is built around reverse psychology...

or is it superstition? Wouldn't you know, it failed me for the first time.

The baby's results came back positive for Pertussis today. For the most part she is fine, but the nights are difficult. Luckily we suspected she was contagious early on and minimized her exposure to others.

Now I'm off to the pharmacy to fill prescriptions for all 7 of us.

Yes I know this was a risk I took when I didn't have her vaccinated, but considering Ty's experience can you blame me for waiting to start her shot series?

Hopefully, the antibiotics will work and everything will get back to some semblance of normal.

Dang it!

The lights are back on in the house of Triumph

We had a few technical difficulties while I pulled the blog down to make a blurb book of our last year. I sure realized how far I'd strayed from the original purpose here. I think I may be opening up shop at a new bloggy house soon.

Sorry if anyone thought I'd gone and made it private and left you out. No one had access for awhile and I almost wasn't able to turn it back on. Phew!

Is it just me or is blogger having serious problems?

And one more thing, we are off to get the baby tested for influenza, rsv, and pertussis (which means that she will be just fine after we pay for the testing - if we didn't go we'd end up paying for an ICU stay, so we're going to err on the side of caution).

Le Pizza Vegetarian - healthy and fast!

One half of this homemade pizza is vegetarian and the other is completely non-vegetarian chicken bbq. I love this pizza crust recipe because it's fast and easy and does not require any sort of kitchen machinery besides good old-fashioned elbow grease.

Mr. Triumph is not really a meat eater anymore, so I have been trying my hand at more vegetarian fair. Even though I really like my chicken bbq pizza, this veggie pizza just may replace it as my favorite. The kids however, are content to stick with pepperoni or cheese.

Troy's Pizza Dough
In a bowl, mix 1 Tbsp. yeast, 1 tsp. sugar, 1 1/2 c very warm water; stir a little and let sit for 5 minutes. Add the following ingredients, mixing well:

1 c. wheat flour (I used kamut flour)
2 3/4 c. white flour
1/2 tsp salt
1 Tbsp oil (I used olive oil)

I like to knead it a little to make sure all the flour is mixed in and then put it into a lightly oiled bowl, cover with a towel and let it rise for 1 1/2 hours (if you are in a hurry - as I was - you can stick it in an oven that has been heated to 150 degrees and then been turned off for about 20-30 minutes).

Punch the dough down, turn it out onto a floured or lightly oiled counter, and knead a couple of times. Divide the dough in half, roll out, and place on a baking pan that has been dusted with cormeal. For the veggie pizza, I spread a little Contadina pizza sauce and then sprinkled mozzarella cheese, artichoke hearts, grape tomato halves, and slices of yellow bell pepper, zucchini, and mushroom. For the bbq pizza, I cooked the chicken with some pressed garlic, bbq sauce and a splash of pineapple juice. I spread the dough with bbq sauce, cheese, chicken, and pineapple. I topped the whole thing with a little more mozzarella and fresh, grated parmesan cheese.

This next part sounds a bit strange, but put the pizza in the oven on the very bottom rack, and then turn the oven on to bake at 500 and set your timer for 18 minutes (check it at 15 minutes). By the time your oven gets up to 500 degrees, your pizza will be done.

Sorry, the pictures of the finished pizza did not turn out because I was shaking and drooling with anticipation or something like that, yah? Suffice it to say that the veggie pizza is the best thing I've tasted since our trip to San Francisco.

Somehow, this has turned into a

food blog. I guess I have just been busy in the kitchen, experimenting like a mad scientist. To the right is Overnight Apple French Toast which we enjoyed last weekend.

It was like eating a caramel apple on toast - a bit sweet, but yummy.

And because I have been devoting gray matter to ensuring I mix ingredients in proper order and increments, I haven't an idea what to post other than more food pictures.

Here's what it looks like right side up

and who can resist these eyes?