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Tyler's Triumph



One boy's amazing journey, and his family along for the ride



Updated: 2018-03-08T08:16:21.725-07:00

 



It's that time of year again

2009-09-20T12:22:25.071-06:00

Every year, the third weekend in September is a time Mr. O and look forward to meeting with parents of Deafblind children.

However, Ty started this past week off with a terrific head cold/cough and has stayed home. We are on Day 9 of his cough. Apparently it's contagious and now Spielberg, Mr. O and I are sick. We tried attending the conference and looked forward to dinner, great speakers, game night and conversation with parents, and a quiet hotel room.

However, by the end of the evening we both felt so cruddy we decided to come home and sleep (or try to sleep) in our own bed rather than risk infecting everyone. Good thing we did - we're both wasted, downing the Sudafed, and considering buying stock in Kleenex with Lotion.

I haven't run since Tuesday night. Wednesday I picked up my sister from the airport, Thursday I helped babysit another sister's kids, on Friday and Saturday I felt like death warmed over, and the prospects for tonight aren't looking much better. I am determined to run again before Tuesday.



Harrumph

2009-09-20T12:07:33.290-06:00

Ty has gone back to school and it has been an interesting start to the year. He has an amazing teacher and a great new Communication Intervener, and we count ourselves fortunate for this.

However, we had a nurse who felt a little out of her comfort zone having Ty on her files. She called the district head nurse who, in turn, called me. It was not a pleasant phone call. She pretty much told me that she was recalling his IEP to determine placement options. In other words, she wanted to move him to the self-contained school that has nurses on site everyday to reduce her nurse's liability. The very same place I had fought so hard to have him removed from back in second grade as he pretty much shut down there.

We had just had a meeting this past Spring with a roomful of people to determine that the local high school was the appropriate place for him, so I wasn't too worried. But I'm frustrated that I let her get under my skin - she was completely inappropriate in how she handled the situation - and for that matter, so was I. I ended up raising my voice and using an actual (although mild) cuss word.

I try never to do that with the professionals that work with my son, as it costs me some serious respect points if I do. She said she didn't have to continue to listen to me, instead she was going to call her higher-up (with whom I am very well acquainted, and I knew she'd have my back) and give them her two cents. I told her to go right on ahead.

Even though Ty had been perfectly fine at the local junior high, she felt high school was a whole 'nother matter. Her reasoning made no sense to me. None. And I was furious. I think I actually saw red. Do not, I repeat DO NOT mess with my kid. She should never have called me directly except to update his medical file and she has no actual authority to determine his placement on her own. I had a moment of panic and extreme frustration (to put it mildly) and called for reinforcements.

I wanted to make sure the teacher was still comfortable with having Ty in his class (he was) and that things were going well (and except for a case of butterflies and nausea on Ty's part, it was). In fact, the teacher, his coordinator and intervener were all surprised and unaware that I'd been called. They all reassured me that he was staying. And stay he has.

Seminary is my next battle. It's a complete philosophy change from the junior high to high school. One that I'm hoping to change.



It's Probably Nothing...

2009-08-23T22:51:12.693-06:00

but Ty's legs appear to be swelling. I'm not sure if he's just bulking up from the new formula or if it's fluid retention. I'm not used to seeing him so filled out.

My mothersense is tingling, so I'll probably take him in to the doctor this week.

He starts High School this week. I can hardly believe it, I have butterflies in my stomach for him. Since it's a new school, new teacher, and new intervener for him I'll be attending school for the first couple days with him to show everyone the ropes.

We go over how to communicate with him, feed and change him, how to reposition him no detail is overlooked, but still my heart skips a beat when I turn him over to the faculty. And then I go home and try to remember how to breathe.



On decisions

2009-06-13T22:30:20.182-06:00

I tend to over analyze everything where Ty is concerned.Okay, maybe I over analyze everything, it's just how it is. I like to cover all the angles before making any big decisions. What follows here is one of these situations. I apologize that it is long and most likely boring to any who read it, but it is our latest conundrum.We visited with Ty's rehab doctor this week and the subject of his increasing clonus and focal clonic seizures came up. Increasing his oral baclofen is not an option, he is on a maximum dose which leaves him fatigued much of the time and affects his ability to void urine (aka pee). His doctor suggested that we attempt placing a baclofen pump on the other side of his abdomen. The one opposite his tumor, the one that developed the last time he had a pump placed. I KNOW.Theoretically, the tumor was a one in a million (well actually 2 in a million) occurrence. We know he does not have the syndromes associated with desmoids so it developed from trauma (surgery or pump), but he has had numerous surgeries that have healed normally.We thought that once he had his spine fused that he would not be a candidate for a second pump (makes it sort of challenging to get tubing into the intrathecal space when a steel rod, bone graft, and associated wires are all in the way). But no, the doctor mentioned that they have the option of threading the tubing from the pump over the top of his fused vertebrae. Meaning that they would insert the tubing at C7, but thread it down through the intrathecal space until it reaches the level of the spine that would specifically address the muscle tone in his lower body.The advantage of delivering baclofen in this manner is that he can be on a micro-dose which will not have the same side effects (fatigue, bladder issues, etc). Currently the medication has to cross the blood-brain barrier so he takes a very large oral dose.All of this to say thata) if they can do the surgery without disturbing the tumor (a very big IF - it's the sort of tumor that will wake from its deep sleep and likely become aggressive again and this time he wouldn't be able to have any more of the chemo that actually worked to shrink the tumor and it could necessitate major surgery to resect it. big breath)b) it will provide more pain relief to his hip without the nasty side effects of narcotics which may be triggering his seizuresc) but no one knows if it will produce a second tumor or flare up the one asleepI honestly don't know what to do. We both don't.I think I am a little bit immobilized by fear. Fear of the unknown. Fear of leaving him in pain. Fear of stirring up the hornet's nest that is a now-asleep, yet formerly aggressive tumor. And lastly, fear of putting my own currently calmed down life ahead of my son's potential pain relief/comfort.Right now I'd like a lightning bolt or a crystal ball, but most especially a strong whispering in my heart.[...]



Run, do not walk

2009-05-31T18:24:56.196-06:00

You must go here and read Lisa's post.

I wish I could print it out and carry it with me to have on hand. I'd wager that most parents of disabled children feel most of these things at some time or other. In case you've ever wondered what do I do, what do I say - read this post.



Dreams and such

2009-04-25T16:07:27.016-06:00

I routinely dream about Ty. And they are such vivid dreams, too.

There is the one where Ty is not quite ready when the bus arrives to get him for school. Normally his bus driver just waits for us if the garage door is up, but in my dream there is a substitute bus driver. He only waits the requisite two minutes before pulling away.

I end up giving chase in my pajamas, arms waving wildly hoping to get his attention. Sometimes I am successful and he pulls back around to pick up Ty. Inside the house, it is a mad dash to get him in the chair and out the door before the driver gets impatient and takes off again.

There are also the dreams where he is a regular teenager and does regular teenager stuff. He drives a car, hangs out with friends in the basement family room, drinks milk straight from the carton, has real homework, and talks to me about girls. I love these dreams.

Recently, I've been having one where he is young again - about 10 or 11. He is on the floor and as soon as I dress him and tell him it's time to get in his chair, he rolls on to his side. Then I help him roll to his stomach and kneel up. He leans against me and hugs me tight while I help him slowly rise and then sit in his wheelchair. He looks directly at me and gives me a huge smile filled with appreciation. The hug and the smile are my favorite part.

He is not healed in this dream, but because he interacts with me more than he does in real life, it's one I hold dear. Ty is one of the most patient, loving people I know. I don't care that it sounds strange, but I think these dreams are his gift to me. They are his way of reaching out to me and communicating on a deeper level.



Remember back when I asked for a nice slice of Boring?

2009-03-18T22:14:29.909-06:00

It turns out that such a thing does not exist (or if it does, it is not very filling nor is it long- lasting). I have taken Ty to the doctor at least 6 times in the past three weeks. We are trying to solve the mystery of his pain. So far, we have been unsuccessful.

We have tried shots and a new medication with fewer side effects, all to no avail. Add to the mix his bronchitis, which is finally coming around after 3 doses of antibiotics (one of them he had an allergic reaction to - lovely!) and the fact that he is having difficulty with peeing. I've had to cath him for several days, but his urine samples test negative for any signs of infection (phew!). So, mystery. The good news is that his g-tube has stopped leaking so much now that his cough is subsiding.

During Ty's chemo and major surgery recoveries, we put the other kids' lessons on hold - it just wasn't logistically possible to be so many places at once. We're making up for it now with volleyball 4 nights a week and dance 3 times a week. Throw in some church callings, service, regular errands, doctor appointments and we are hardly ever here. I'm not complaining. I'll take this kind of hectic over watching a child go through chemo any day. Any day.

It's just getting the best of me. I am still feeding the family, staying ahead of the laundry (as much as one can), and even occasionally sweeping a few dust bunnies into the bin. But! I am sick. I've been ill, except for a 3 day reprieve, since early February and I am just tired. Very, very tired of being sick. So I'm telling this mung to take a flying leap. Leave! Be gone with you!

Anyone think that will work?



Update

2009-03-10T14:40:52.088-06:00

The roads were sufficiently icy this morning to tack on another 20 minutes to our hospital commute. We met with the surgeon who was actually very impressed with Ty's g-tube site. He has ordered one with a slightly longer stem and we'll see if it slows down the leaking.

The surgeon feels that because Ty is sick right now his stomach is taking longer to empty, and that the leaking will most likely resolve itself once his cough is gone. Or it could be the pain meds slowing things down. We did find out that he won't perform a third Nissen on Ty, so if the current one fails and he is able to vomit via his mouth again we'll have to explore a different option. One of our options is to put him on continuous pump feeds and a second option is to bypass his stomach and have a j/g-tube placed. Which ever it ends up being, I hope it's a very long time before we have to consider either one.



G-tube complications

2009-03-06T13:08:22.629-07:00

First, let me say that I love the fact that Ty has a g-tube, it's our back door, so to speak. He used to eat whatever we ate, just blended up with a little milk to thin it. But then chemo changed his mind about eating anything other than Pop Rocks and Cotton Candy. Now we feed him an enteral formula every three hours from 9 AM to midnight.

This latest round of bronchitis has somehow changed how his button (g-tube) functions. He is swallowing a lot of air and it is trying to escape around the opening for the button. Last night, formula and stomach acid began leaking out a little (and by that I mean profusely). We now have an appointment to meet with the surgeon early next week. He's going to measure Ty for a new button size. Meanwhile I need to keep Ilex cream on his stomach around the opening and feed him smaller amounts every 90 minutes. Oh joy!

Hopefully, he'll get rid of his cough in the next couple of days and that will slow down the leaking.



The House of the Rising (Fever?)

2009-02-25T15:14:04.423-07:00

Ty has joined the ranks of the sick and afflicted. Everyone but me and Spielberg has had a fever of 103 (or 104) in the past week. Ty's came on suddenly and was accompanied by a horrible cough and boatloads of mucus.

He has, so far (knock on wood and all that jazz), never had pneumonia. I'm keeping a close watch though. The past two nights I've been playing Florence Nightingale and lifting his head to his chest every time he coughs (it's the only way to get any of the crud out). This means I do not keep conventional hours. I think it was somewhere in the neighborhood of 4:27 AM that he finally rested enough for me to feel comfortable with hitting the sack. Mr. O is home sick with it as well and took the morning shift with Ty, and I squeaked in 4 hours of shuteye.

Ty usually only gets sick once per year, so this is it. He's giving it his all.
***
In other news, he recently had both a cortisone shot and a phenol shot to his left hip joint in hopes of lessening the pain he's been experiencing. Something has happened since his surgery, we're not sure what, that is causing his hip to grind bone on bone whenever we move him.

The shots seemed to have helped with decreasing his pain when we move his leg from side to side, but when we move it up and down (like when we are dressing him or putting him in his chair), we still have to scrape him off the ceiling.



I think we can call it a success

2009-01-05T19:35:22.850-07:00

Ty went back to school today for the first time since his hip surgery last year. And he did okay. I didn't have to go get him early - he made it.

He is still in a lot of pain, so I can't say the surgery was a success yet, but I'm still hopeful.

If he keeps going to school, I might get to leave the house during the day.



Hip Update

2008-12-12T13:32:19.718-07:00

Before
(image)

After - it's still not ideal as there's a bit of bone-on-bone causing pain, but we're hoping the arrows align as his muscles heal and tighten up. You can see the plate in his right leg as well. He has more metal in him than an Ace Hardware store.
(image)



Sweet 16 - Sweet, but hard

2008-11-26T00:19:21.822-07:00

(image)

Edited to add: I thought it fitting to use this for my Wordfull Wednesday post (more entries at Chocolate on my Cranium) because even though it's hard, it's also amazing to be Ty's mother.

Tyler's 16th birthday came and went last week without the usual accompanying 'Sweet 16' celebration. In fact, I hate admitting this, I didn't even wish him a Happy Birthday on his birthday. (I know! What is wrong with me?) Ever since I filled in the dates on the fridge calendar last month I have been thinking about it, so it's not that it hasn't been on my mind - it has. Oh, how it has.

I remember when we first started taking him to Early Intervention-speech, physical and occupational therapies-he was 6 months old. A case worker brought a video for us to watch entitled, Mourning the Loss of your Dream. She expected us to break down and sob, let it all out so we could "move on."

It's strange, but at that time we felt no real sense of loss for the life he might have had if he'd never had his shots at 2 months resulting in a life-altering brain injury. Instead, we had a strong feeling that he would lead us on a journey of much growth and love. And oh, how he has.

However, that sense of loss has snuck in like a stranger in the night a few times since then:

when the neighbor's baby started walking
and talking

when the kids in his class started being invited to birthday parties
and reading, writing and learning arithmetic

when the kids in his scout troop (the one he would've been in) started getting their Eagles
and, now, when they are driving, dating, and discovering their talents

I think about how it might have been - the friendships he'd have made, the girls he'd be crushing on (or who'd be crushing on him), the kind of big brother he'd be (definitely sweet), the miles of running and walking he'd have done by now, the sports he'd have loved to play, the food he'd be devouring during his teenage growth spurts, and yes, even the musical instruments he might have taken up.

On milestone birthdays, these thoughts and dreams raise their heads and give me pause. I am sad for him and also, selfishly, sad for me. Sad that the only conversations we have are the ones in my mind or with our eyes, sad that he cannot (right now) have the dreams in my heart for him or become independent and have these same dreams for his own future children.

I let myself mourn what might have been and then, carefully, I tuck those dreams back into their treasure box to store up against some far distant future where God will breathe Life into them. Then I come back to how it is, rejoicing today in the many lessons he's taught me, all the many ways in which he has stretched the corners of my soul - filling them up with love and gratitude for a life so precious.

He is my Sweet 16. Happy Birthday son!



We're home

2008-10-31T01:31:59.826-06:00

I got a bit confused and

posted about the difficulites of only being one person here

and the craziness of transporting Ty home

at Positively Organic (my other blog). Sorry, I blame it on hospital brain/lack of sleep/lack of any kind of decent food.



Tachy is tacky

2008-10-29T00:13:58.905-06:00

Ty was moved to the floor (off PICU) this afternoon after they removed his art line. All day he was tachy (high heart rate in the 170s and 180s, not good) and generally felt pretty crummy -moaning and holding his breath. His peripheral IV blew, but we figured it out before it infiltrated and gave him elephant arm.

Meanwhile, his fever got up to 103.2 around dinner time. Currently, it's come down to a reasonable 100 and his heart rate is in the 120s (much better). His blood pressure is a bit low - 92/48, but it's probably due to all the pain meds finally working.

Did you know that the effects of Valium last longer when it's given orally rather than via IV? Neither did I, but it seems to be doing the trick for him. He is relaxed enough to sleep and that does my heart good.



Textbook

2008-10-28T09:55:05.845-06:00

You know things are going well when the residents/groupies do rounds and they only discuss the kid in the next bed before moving on.

Ty still has a low grade fever of 38.4/101.1 and is feeling the pain, but otherwise he is a textbook post surgery patient. This kid is resilient - I wish I could say the same for me. If only I would've brought something to do besides a Sudoku book, as he seems to need no more than for me to sit next to him and offer an occasional soothing word.

Well, I'm off to queue up for my *textbook* hospital shower as soon as I can figure out how to stand again (thank you hospital bed/cot).



Better than expected, which is always a bonus!

2008-10-27T23:07:20.796-06:00

Mr O and I awoke at 4:30 am today, and with my Aunt M's help got Ty off to the hospital at 5:20. I still felt like maybe we'd just be turning around again to come home (due to some unforseen something or other), but we arrived to standing room only in surgery check-in.

Fortunately, Ty had the same anesthetist that helped out when he had his baclofen pump removed (due to the tumor, which we thought was a hematoma, but wasn't - you can read more here) for his surgery today. She remembered him, and was very careful about his tape allergies - he is practically covered in Mefix and Tegaderm (the only two he hasn't reacted to so far).

The surgery went quicker than expected. Hardware was removed from the last hip repair and a Schanz Osteotomy performed on his left hip. That is the third procedure for this hip, hopefully, it's the charm! He also had to have his right femur shortened because it was already 4-5 inches longer than the left - with the osteotomy it would've been about 7-8 inches longer and that is not good for fitting in a wheelchair or going through doorways.

Our surgeon truly is one of the best I've had experience with. If you live in my area or anywhere within driving distance, I highly recommend him. He always talks to Ty as if he is a regular kid, and that is something that warms my heart.

Ty did not require any blood transfusions, his crit going into the procedure was about 42 and only ended up coming down to the low 30s (which is awesome). He did require some ground bone tissue at the surgery site to help him heal, but they were able to use the portion of his own bone that had been removed from his right leg. Normally, cadaver bone powder would be used.

Instead of putting him in a spica cast, he has a full-length wedge strapped between his legs to help keep them from going back into the old position he prefers. I have no idea how we will get him home.

Right now he is resting peacefully in ICU, perhaps a little too peacefully as his oxygen levels have dropped a couple of times to 80. He is still hooked up to various lines and beeping machines, as well as spiking a small fever. Hopefully he will be moved to the regular floor tomorrow.

Thanks all for your kind thoughts and prayers, things have gone so well.



Big day tomorrow

2008-10-26T18:29:57.768-06:00

It will start at the crack of dawn. We'll arrive at the hospital around 6am, and surgery will start at 7:30-ish. The repair to his hip and the shortening of his right leg should last about 4-5 hours.

In the back of my mind, I have been anxious about this operation. Instead of packing for both of us, I've turned to sorting through Ellie's clothes. I haven't planned menus for the week or bought groceries, or even exactly planned out who will be taking care of the kids. I know all those things will work out and be okay without me having to micromanage it all.

I recognize that I'm in surgery denial. Maybe, because it was cancelled the last time, I have a hard time thinking it will actually happen tomorrow. Ty may need a unit of packed RBCs tomorrow so we went in to have a type and cross-match drawn today. Maybe it is going to happen after all. Sigh...



7 Things

2008-10-17T23:32:20.846-06:00

I was tagged by krisijo of Mamma Mia to tell you a few things, so here goes

1. I'm the oldest of 7 (6 living), and I'm pretty sure I'll never live it down. It seems I'm the meanest big sister in history. TOUGH as NAILS.

2. I had a fab garden this year

3. I've never broken a bone, but I have dislocated one

4. I'm a sucker for Aussie/Kiwi/British accents

5. I've got a weakness for chocolate, Dr. Pepper (diet now), and Bajio's Shrimp Salad

6. Must, must multi-task

7. I aspire to be clutter-free

Oh! and I have another blog, Positively Organic - go read my entry for Scribbit's Writeaway contest and tell me what you think.

Feel free to play along.



Traits you can learn from children

2008-10-13T02:18:44.643-06:00

REPOST from October of last yearFirst the positives, then the creative spin on things:1. Love - it seems all children have hearts big enough for the whole world. Any stray animal, anyone less fortunate than they are, every relative, and any baby - all can be loved in the same capacity. There is no place in them that can understand why anyone would ever let a holocaust happen.2. Faith - When Spielberg left his bike out overnight and it was missing the next day, he just knew it had been stolen. We prayed. He looked everywhere he could think of. We drove around looking on all the side streets - all to no avail. We prayed more. The next day, I had a feeling I should drive down a side street before going on my errands, and then another feeling to turn around and go down a street I had passed earlier. There it was; his bike was laying next to the sidewalk in a bush. He just knew it would come back to him. Faith in those smaller things can be very encouraging for parents facing seemingly bigger challenges.3. Forgiveness - the ability to forget their parents' or friends' wrongs against them, to embrace them, and accept apologies is an amazing gift (too bad it doesn't always extend to siblings).4. Priorities - last year when Ty was really struggling because of the tumor, Spielberg commented to me that the tumor in Ty's body was like a war. I thought he meant that the good cells were fighting the bad cells, but he was really referring to the fight between our family (all of us, even Ty) and the tumor. He took it a step further and mentioned that it was like WWII when rationing was put in place. He explained that we were having to ration our time with the children because the tumor was requiring so much of our time and energy to fight it.5. Ambition - are most kids this enterprising? Spielberg has run a lemonade stand/golf ball shop, a small vending machine, and an honor box (which is like a vending machine run on the honor system); Michelle has sold peaches from our tree, cucumbers and zucchini from the garden, toys she didn't want to play with any more, and lemonade; Nicole has tried to sell rocks, her inkblots and paintings, and crafts she's made. Michelle wanted a dog and she saved her pennies, spent hours thumbing through dog books and internet pages of shelter dogs, and she got one! Adria reminded me that after Michelle watched "The Secret," this was her dream. (see #2, above)6. Imagination - Once, after recent dentist visits, I could hear the water running in the hall bathroom and the girls were giggling. I opened the door and there Michelle was, donned in latex gloves and one of those tie-on surgical masks, and wielding a toothbrush with Nicole sitting on a chair, and a towel draped around her neck. She was giving Nicole the "finer points of dental care" lecture and snapping digital xrays by sticking a baggie-covered popsicle stick into her mouth.7. Helpfulness - (the double-edged sword) Nicole came running down the stairs screaming and crying, "I think I broke the computer!" She was hysterical and once she calmed down a bit, we discovered that she thought it would be a good idea to dust the inside of the computer tower - WITH A PIPE CLEANER."There were fireworks, and now my hand stings." We discovered black marks on her hand and when we turned off the power, we found the pipe cleaner had welded in 5 places to the frame of the computer - but it survived and Nicole was only shaken, not stirred.8. Talents - Doing what you're good at, doing what you love. I routinely find Michelle in the midst of holding a preschool, [...]



A brief history and a new plan

2008-09-27T15:37:53.379-06:00

So here's how his hip looked in June. Most people have a 120° angle where the head of their femur turns to go into the hip socket, Ty's is 90°. A normal hip socket usually looks like this.
(image)

Only 3 months later, things are drastically different. Taking the same picture, try to imagine making the two arrows line up, and that is what his hip looks like now. There is no cartilage, and the ball has moved to the North 40 - I mean it is all the way out there in its own zip code!
(image)
This is what the surgeons think will fix it and significantly reduce his pain. The only catch is that the process will shorten his left leg. It is already 6 inches shorter than his right leg, so they will shorten his right leg in an attempt to even them out.
(image)
How do you ever plan for these sorts of things? Ten years ago, I had no idea he'd be as tall as I am, require major back surgery and five hip surgeries, not to mention the tumor and chemo. Through it all, he is still mostly pleasant (I am not sure I can say the same for me).

One of the only good things I can think of to come from all of this is his increased desire to communicate his needs and wants. I have heard him call for me by saying mom over and over - I wish it were more like "Mom, mom come check out this new song on my Ipod." Or "Mom, mom, I sit next to the cutest girl in my English class." Or, "Mom, mom how about this idea for my Eagle Scout Project?"

But you know what they say about wishes...come on, let's all have a fish fry! What do you wish for your children?



Update

2008-09-22T11:18:06.755-06:00

Results: clean labs, no bacteria.

I'm not sure I believe it, but now we can schedule a surgery date. Yes!



Abort, Abort!

2008-09-03T20:49:46.250-06:00

At the last minute, I discovered that Ty's infection is not cleared up. In fact, he has a whole new organism and a high WBC.

I happened to see the doc when we were checking in, I motioned to him through the glass and he made his way over. Any doctor who gives you a hug and a smile, gets down on eye level with your child, puts his hand on that child's shoulder and asks him how he's doing (even though he'll only respond with a smile) is awesome! I brought up the high white blood count and we decided to wait until the current antibiotics have run their course and Ty has a clean lab culture. Better safe than sorry.

The surgeon has also come up with another idea for repairing his hip (it will take more time to complete, but will hopefully be more than a temporary fix.) Here's hoping this round of meds works.



Man about town

2008-07-13T03:20:38.409-06:00

The two year old had been begging me to take her somewhere all day. I mean ALL DAY. And I kept giving her reasons why we couldn't go anywhere - Dad wasn't home, the girls weren't home and we couldn't just leave Ty.

Then it hit me - I bet he was bored as hell dying to get out and go somewhere too. I had my little girl help me get him ready, she even knew to bring me the hair gel so I could touch up his spikey flat top.

I got him in the wheelchair and just like that - we were off. I decided to surprise her by walking to the park. It's her absolute favorite place. On our way, we ran into neighbors - scads of them. And it was nice.

Ty wasn't too happy, his hip is dislocated and sometimes it causes him a lot of pain, but he managed so much better than I thought he would. We all had a lovely evening: the two year old on the slides, the girls on the swings, Ty holding my hand, and me watching them all from the park bench and chatting it up with neighbors. Imagine that!



Tumor Update!

2008-06-17T18:40:48.273-06:00

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.
(image)
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.
(image)
Here's hoping next year holds even better news!