Trenda's Kids After Cancer

$19,495 of $20,000 goal

Raised by 155 people in 30 months
I was diagnosed with a very rare form of cancer called Ewing's Sarcoma in July 2015. Thankfully, it has not metastasized yet, so I will begin chemotherapy on September 1st, one day before my 33rd birthday.

Additionally, my wife Alexis and I are currently trying to have children. We are trying to have two children in the end. Unfortunately, there is no guarantee of my fertility returning after chemotherapy, so now we are forced to try to preserve whatever we can before treatment starts. We will also need to go through many more costly procedures later, in order to actually get pregnant. Depending on how many deposits we can make before the chemo starts, this may have to include in vitro fertilization in order to make use of whatever healthy sperm we can collect.  The estimated cost per IVF is $10,000.   

My health insurance covers cancer treatment very well, but does not cover fertility treatment at all. We are starting this fund to cover those fertility costs involved in starting our future family, due to this unexpected development in our journey.
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The drain is OUT!! It actually came out last Wednesday (7/29), and I've been meaning to update since then, but I've been so busy enjoying my freedom that I haven't had a chance to properly update since then. I can't even begin to describe how relieved I am that the last semi-permanent leash of this process is finally gone.

The at-home sclerotherapy worked beautifully. The daily outputs of the drain were less than 4mL by the week before my next scheduled sclerotherapy appointment. I was absolutely giddy any time anyone asked me how it was going - since the doctors said that less than 10mL daily was the threshold for removal, I knew that it was likely to come out on that Wednesday. The doctor came in, measured the size of the cavity (3mL!), and said, "Yep, that looks good. I think we're done here." I suggested that maybe we could do one more round of the in-clinic three-chemical sclero, but his response was, "No, I don't think that's necessary. Let's remove it right now." And then he took it out right there. It felt pretty weird feeling the tube pulled out from under my skin, but it was over in a few seconds and the adrenaline from my anticipation washed away that feeling immediately. He did say that with lymphoceles, the probability of recurrence was moderately high, and if it becomes bothersome, we'd repeat the drain+sclero process until the scar tissue has been built and re-built until it stops happening. Whatever. I'll take and enjoy my freedom whenever and as long as I can get it. It's way better than having a grapefruit-sized bump in my leg, and still much better than dealing with a ball (of gross juice) and chain (tube) attached to that site in my leg.

Alexis pointed out this week that it was my one-year anniversary of my cancer diagnosis on Thursday (8/4). I agree with her assessment of things going 100mph and 0mph at the same time for a whole year. Looking back, it's been a long, prolonged fight, but thankfully, I ended up peacefully sleeping away most of the worst of it during that time (mainly due to the fatigue). I feel like I've been going in and out of spurts of hibernation for the better part of a year. It's even been hard to get back into the swing of regular chores like laundry and mowing the lawn. I've had such a great excuse to be lazy for such a long time now. ;) That said, the swing is coming back, and things are finally starting to feel like normal again.

As far as the cancer treatment process, all that's left at this point is to remove the port. I'm not superstitious about it, but since it's not really an inconvenience (aside from "what the hell is that bump?!" when I take off my shirt), I'm not in a hurry to do it. My next scan is in October, and I'll be getting scans regularly after that for the next several years. That said, and the process essentially finished, I think this is the last of my regular updates. I'll try to update as scans come in, though. I am SO thankful for all the support all of you have given me over the past year. Words can't even express my gratitude. I am ecstatic that this whirlwind of a chapter in my life has come to an end. I look forward to the next one, as my dear wife Alexis starts her own journey.
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Great news! At my latest sclerotherapy session on Tuesday, they found out that the cavity in my leg is only 7mL now, down from 10mL last week and 20mL the week before that. What's even more amazing is, the daily outputs from my drain have decreased from 50mL two weeks ago, to 25mL last week, to less than 5mL this week! I've been doing twice-a-day Betadine injections myself at home for the past two weeks, so this means IT'S WORKING. The doctors said the threshold for removing the drain is 10mL/day, so barring any weird jumps in output, this means I'm definitely getting this thing out next Wednesday.

After the drain is removed, the only thing left is to get my port removed, and Dr. Skubitz said that can happen whenever. We are SO CLOSE to the end of this particular crazy chapter in my life. I'm excited. ^_^
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Been a while since my last update. Lots of news in the meantime.

First of all, the great news. I had my first post-chemo scan last Monday, and got the results last Wednesday. They were clear. So technically I'm cancer-free. Of course, I won't be considered cured for another two or three years, but as of right now, I'm in the clear.

Second, the drain situation has been much better for the past few weeks. I got the leg-bag drain changed out for a bulb-style drain. It's smaller, so I can loop it through my belt for carrying around. Which means I've been able to wear shorts again! Also, it applies constant suction from the drain area, so I don't have to keep it below the area any more. Which means I've been able to kick up my legs on the couch again. Things have been WAY better since that got switched over.

Although the drain maintenance has eased up, the drainage amounts coming from the area haven't really slowed down to the point where we can remove it yet. At this point, they're classifying it as a lymphocele instead of a seroma. Seromas are usually due to "weeping" of fluids around an area after a surgery, but a lymphocele is basically a lymph tube that's putting fluid into an area, without the other end of the lymph tube available to let the lymph fluid flow out of that area. So two weeks ago I started something called sclerotherapy. They use the drain tube to inject some chemicals (lidocaine, alcohol and tetracycline) into the cavity that will irritate and inflame the tissue. The idea is that the inflammation will build up scar tissue in the area, and that scar tissue will seal off those open lymph tubes. It's going OK so far; the cavity volume has decreased a little. They have said that sclerotherapy could last up to a few months, though, so I'm not holding my breath for a quick result just yet.

At least with the main drain inconvenience fixed, I can start getting back to enjoying my summer. I've been out disc golfing and shooting archery more often, and I was even able to homebrew twice this past month. Life is starting to get back to something at least resembling normal, and I'm thankful for that. :)
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I had meant to update earlier this week, but I've been playing a lot of catch-up since Wednesday.

I went into surgery early Monday morning to get a drain put into the site in my leg. I've been looking forward to this for a long time now. Some of you have seen the picture of the first time I had the site aspirated; well, I've had to go in every week since then to get that process repeated, because it would fill back up with fluid rapidly, sometimes by the end of the same day. So I've been living with some level of that big bump daily for two months now.

Introduce the drain. Something to keep the fluid continually flowing out of the site and prevent it from ballooning the skin there sounds like a godsend, right? I guess I wasn't prepared for how much equipment that meant I would have strapped to me ALL THE TIME, nor how uncomfortable it is to keep the whole setup working.

First, the drain tube is basically that - just a long little tube, stitched into your skin and connecting the outside to the inside. Easy, right? Except it's an open wound. And needs to be cared for like one. So it's back to Saran wrap for showers and daily bandage changes, otherwise infection. And then the tube needs to be taped down after that so that it doesn't pull at the stitching - because pain and infection, and the whole thing could come out if it's pulled too hard. At least the random pangs from the tube site are starting to go away now.

Then there's the flush port after that - I have to saline-flush it twice a day, so that it doesn't get stopped up with blood clots and such. Not too hard, I'm pretty much a pro at port connection cleaning and flushing after all the chemo.

Finally, the whole thing goes through a bunch more tubing and ends up in a big ugly gravity-fed drainage bag at the bottom. (I thought I was done with bags, after the ifosfamide.) I have to empty it once a day and record how much is there. The gravity-fed part is a pain - it has to sit below the site, strapped to my calf, so I can't wear shorts while I have it on (because it looks gross, like a bag of blood). But then I can't put my feet up at home, and with jeans on, I can't unstrap it and set it on the floor. And now I'm back to sleeping in the chemo room, because the bag has to sit on the floor while I sleep, and we don't want the foster dogs accidentally walking on the bag and puncturing it. Ugh!

On top of all of that, I ended up with a slight fever on Monday that kept me home on Tuesday. Fortunately, it cleared up in time for work on Wednesday. And the redness in the area that looked like infection now looks like it's clearing up.

The silver lining to all of this hassle is that the drain should only need to stay in place for two weeks - now only a week and a half left. I have a follow-up appointment on Monday to check up on progress. Very much looking forward to being done with this part too.
What a complicated contraption.
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Read a Previous Update
A CaringBridge campaign
Krista Maslowski
30 months ago
3
3

I love you Scott and Alexis! I wish I could donate right away, but Steve and I will be at your benefit ready to help out, donate and give you tons of support. You know I'm just minutes away to help you whenever and however you need.

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Deb Kuehl
18 months ago

Whohoo! You have both been pillars of grace and courage throughout this process. Congratulations. Enjoy the rest of the summer!!!

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Deb Kuehl
21 months ago

Congratulations. Glad you brought your own bell! Enjoy the summer and your lives.

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Deb Kuehl
21 months ago

Yay Scott! Last chemo. Now you can ring the bell and enjoy the summer.

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$19,495 of $20,000 goal

Raised by 155 people in 30 months
Created August 13, 2015
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KT
$20
Karen Thayne
18 months ago

Almost there! So excited for you! Love you!

PG
$250
Prime General
20 months ago

We all here at Prime General wish you the best!

LR

Getting close to the goal, I think it is within reach

Krista Maslowski
30 months ago
3
3

I love you Scott and Alexis! I wish I could donate right away, but Steve and I will be at your benefit ready to help out, donate and give you tons of support. You know I'm just minutes away to help you whenever and however you need.

+ Read More
Deb Kuehl
18 months ago

Whohoo! You have both been pillars of grace and courage throughout this process. Congratulations. Enjoy the rest of the summer!!!

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Deb Kuehl
21 months ago

Congratulations. Glad you brought your own bell! Enjoy the summer and your lives.

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Deb Kuehl
21 months ago

Yay Scott! Last chemo. Now you can ring the bell and enjoy the summer.

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