T&P’s
- Thread starter TennNole17
- Start date
Roughly 7 weeks in, of what is a long process. Received a text Friday from his Dr., that the spots on his lungs are gone as of his latest scan, and the tumor in his pelvis continues to shrink. The pelvic area is the last big thing, and its all over the place, but shrinking at a rate they think is good. The chemo he has been on so far, he’s handled like a champ. Very little side effects, so far.
He’s putting some weight back on. He had lost about 10lbs when we left St Jude, half of which was tumor weight.
Biggest challenge now is once a week he gets his dressing changed on his pick line, and you’d think they were amputating a leg. And sealing the thing so he can have a bath is just as impossible, so he hasn’t had a proper soak in a minute. And the mornings when he has to go down for scans, so he can’t eat after midnight, and the scans don’t start until after lunch- no fun.
St Jude has been great. Out of medicine, sight scrubs, tools- call them and they courier it out or have it ready next time you’re there. Our head Dr. sends us a text every other day. It’s a pretty amazing place.
I joined some RMS support group on Facebook, and wish I hadn’t. Even one type of cancer has so many different areas it effects, ages, etc. It’s pretty sobering. That, and I can’t understand half of what they post because they use acronyms I don’t understand.
Dealing with logistical stuff so momma can focus on him has kept me busy, but is infuriating. We’re not married, so I have to get added as an authorized party every time I call and yell at someone. Her insurance (Aetna) wasn’t great to begin with, but because she is (was) a server, her checks barely covered her deductions. When she was in IL, they paid more, in TN, you get like $1.33/hour. So between some lapse in coverage and just basic shitty insurance, we have about $120k of bills for treatment prior to St Judes. On top of that, she opted for some supplemental Aflac Critical Illness coverage, and they just denied her claim. Stings a little.
Keeping things in perspective though, can’t really complain with how things are going. When I think about how many things had to fall into place for him to even be receiving treatment at St Jude, I just quit bitching about things and consider it will all work out.
As always, re-sharing the GFM link. It’s really helped so far, in tangible ways. Mom posts updates on there occasionally too.
https://www.gofundme.com/wdeqq-hudsons-helpers
He’s putting some weight back on. He had lost about 10lbs when we left St Jude, half of which was tumor weight.
Biggest challenge now is once a week he gets his dressing changed on his pick line, and you’d think they were amputating a leg. And sealing the thing so he can have a bath is just as impossible, so he hasn’t had a proper soak in a minute. And the mornings when he has to go down for scans, so he can’t eat after midnight, and the scans don’t start until after lunch- no fun.
St Jude has been great. Out of medicine, sight scrubs, tools- call them and they courier it out or have it ready next time you’re there. Our head Dr. sends us a text every other day. It’s a pretty amazing place.
I joined some RMS support group on Facebook, and wish I hadn’t. Even one type of cancer has so many different areas it effects, ages, etc. It’s pretty sobering. That, and I can’t understand half of what they post because they use acronyms I don’t understand.
Dealing with logistical stuff so momma can focus on him has kept me busy, but is infuriating. We’re not married, so I have to get added as an authorized party every time I call and yell at someone. Her insurance (Aetna) wasn’t great to begin with, but because she is (was) a server, her checks barely covered her deductions. When she was in IL, they paid more, in TN, you get like $1.33/hour. So between some lapse in coverage and just basic shitty insurance, we have about $120k of bills for treatment prior to St Judes. On top of that, she opted for some supplemental Aflac Critical Illness coverage, and they just denied her claim. Stings a little.
Keeping things in perspective though, can’t really complain with how things are going. When I think about how many things had to fall into place for him to even be receiving treatment at St Jude, I just quit bitching about things and consider it will all work out.
As always, re-sharing the GFM link. It’s really helped so far, in tangible ways. Mom posts updates on there occasionally too.
https://www.gofundme.com/wdeqq-hudsons-helpers
Good news Tenn, sounds like he's putting up one helluva fight. Pulling for you guys.
A week ago today, he got a bunch of different chemo cocktails. They said this is the one that will lower his immune system/ANC number, and make him lose his hair. To combat that, we have to give him daily injections for 7-15 days to boost it back up.
I went ahead and shaved his head so it wouldn't be as bad, but I haven't noticed it going all out, yet. and his ANC numbers have responded well, so no medical masks everywhere we go. The chemo has hampered his ability to "heal" a little bit, so his incision on his leg/balls started getting irritated and "leaking" some.
But, injections at home, by far is the roughest so far. I basically have to restrain him while mom tries to pinch enough skin in his thigh and get this little needle in there while he tries to kick everything. They "trained" us on the process of injections, but the practicality of giving a 4 year old a shot, at home, on your own is just difficult. The alternative is we drive down to St Jude everyday and have them do it, which is about an hour round trip.
He has scans coming up in the next two weeks, so hoping for continued forward progress.
Sharing the GF link again. Thanks to Nolo and P&B for their generous donations. It's basically paying bills at this point, so thanks anyone who shares or donates. I make a average salary, but losing half the household income so mom can care for him stings. So, my job is to keep her mind of it, share this stuff, spam local celebs, business', organizations that assist, etc.
Go Noles!
I went ahead and shaved his head so it wouldn't be as bad, but I haven't noticed it going all out, yet. and his ANC numbers have responded well, so no medical masks everywhere we go. The chemo has hampered his ability to "heal" a little bit, so his incision on his leg/balls started getting irritated and "leaking" some.
But, injections at home, by far is the roughest so far. I basically have to restrain him while mom tries to pinch enough skin in his thigh and get this little needle in there while he tries to kick everything. They "trained" us on the process of injections, but the practicality of giving a 4 year old a shot, at home, on your own is just difficult. The alternative is we drive down to St Jude everyday and have them do it, which is about an hour round trip.
He has scans coming up in the next two weeks, so hoping for continued forward progress.
Sharing the GF link again. Thanks to Nolo and P&B for their generous donations. It's basically paying bills at this point, so thanks anyone who shares or donates. I make a average salary, but losing half the household income so mom can care for him stings. So, my job is to keep her mind of it, share this stuff, spam local celebs, business', organizations that assist, etc.
Go Noles!
sidebar: Iowa State football team down here today to visit the kids at St Jude. Got some Cyclone Jerseys now for them. Pretty cool of them.
Glad to hear it's going ok so far. Sorry I can't help out right now, got laid off as a Christmas bonus.
Sharing helps just as much, trust me!
And dude, that really sucks. Even if you’re a nut and berry guy, always enjoyed your perspective. Hope everything works out!
Shared.
Timing sucked but we'll be fine. Hope things go as well for your little guy as the other friends who have gone thru this recently.
Timing sucked but we'll be fine. Hope things go as well for your little guy as the other friends who have gone thru this recently.
Thanks justme; and thanks as well Belem!
I, admittadly, used to ignore most of the GFM links in my feed. Sharing them helps, donating helps. It all helps.
I’ve yet to break down about all this, but did a tad earlier when his mom wasn’t around. Kids really feeling the effects after the first few treatments. And my daughter, 10, holding him broke me to pieces.
I, admittadly, used to ignore most of the GFM links in my feed. Sharing them helps, donating helps. It all helps.
I’ve yet to break down about all this, but did a tad earlier when his mom wasn’t around. Kids really feeling the effects after the first few treatments. And my daughter, 10, holding him broke me to pieces.
Sucks dude, we had a cancer scare when my daughter was 2 and it was world shaking. I'm amazed by my friends who have powered thru it, and the kids that manage to bounce back and keep being kids.
Tenn, It's been a long while since we got together. Your family situation is obviously different now, but you are a good dude who wants the best for the kids. I donated some to try to help. T&Ps for the little guy. He looks innocent, but I can tell he is a fighter who will go on to do great things.
Been a few months since I provided an update/vent:
Recap:
October last year, Hudson (4 years old) was diagnosed with RMS, which I've since read a lot about. It's a rare form of cancer, that develops mostly in soft muscle areas, most commonly in the orbit (eye) and neck, and presents as like a lump/marble under the skin. His, however, presented right in the ball. It was about the size of a softball, slightly smaller. Scans showed he had spots on his lungs, and his pelvis/torso area was basically all tumor. Organs were all shifted around because it was so big. He had a ball and tumor removed at Lebonhuer in late October, was accepted to a trial at St Jude, and started Chemo the week of Halloween. He ultimately was classified as Stage IV, high risk, since it had metastasized.
We've been doing Chemo at St Jude ever since, with only a few stays inpatient.
Lil guy received his updated CT/PET scans Monday/Tuesday this week. No new spots have appeared, and the tumor shows little to no activity, and is about the size of a half dollar now. He'll have surgery, hopefully soon, to remove what's left, followed by radiation to kill any remaining cells.
The stuff coming up is really interesting/scary, to me. The surgery, in that they're gonna literally tuck his remaining ball inside him somewhere; and of course removing the remaining tumor in his belly area. This tucking will somehow protect the remaining testicle from the harmful effects of the radiation.
The radiation comes with all sorts of scary stuff, but the tech they have at St Jude apparently can target a single cell. I've got to read up on it.
He'll finish up regular treatment at the end of summer, but then his trial has 6 months of maintenance chemo, which hopes to prevent it from coming back. His greatest risks are a relapse, which decrease each year he gets clean scans.
It's been a LONG few months, but he's handled it better than his mom and me. I still get frustrated dealing with hospitals, and insurance companies, and scheduling, and miscommunications with the nurses, on top of juggling my own 15 year old and 11 year old girls. Realistically he's been incredibly blessed and lucky so far, so I try to shut up and not complain.
Thanks again for those who donated before, it paid rent a few months, and especially for those who send the good ole' T's and P's.
Recap:
October last year, Hudson (4 years old) was diagnosed with RMS, which I've since read a lot about. It's a rare form of cancer, that develops mostly in soft muscle areas, most commonly in the orbit (eye) and neck, and presents as like a lump/marble under the skin. His, however, presented right in the ball. It was about the size of a softball, slightly smaller. Scans showed he had spots on his lungs, and his pelvis/torso area was basically all tumor. Organs were all shifted around because it was so big. He had a ball and tumor removed at Lebonhuer in late October, was accepted to a trial at St Jude, and started Chemo the week of Halloween. He ultimately was classified as Stage IV, high risk, since it had metastasized.
We've been doing Chemo at St Jude ever since, with only a few stays inpatient.
Lil guy received his updated CT/PET scans Monday/Tuesday this week. No new spots have appeared, and the tumor shows little to no activity, and is about the size of a half dollar now. He'll have surgery, hopefully soon, to remove what's left, followed by radiation to kill any remaining cells.
The stuff coming up is really interesting/scary, to me. The surgery, in that they're gonna literally tuck his remaining ball inside him somewhere; and of course removing the remaining tumor in his belly area. This tucking will somehow protect the remaining testicle from the harmful effects of the radiation.
The radiation comes with all sorts of scary stuff, but the tech they have at St Jude apparently can target a single cell. I've got to read up on it.
He'll finish up regular treatment at the end of summer, but then his trial has 6 months of maintenance chemo, which hopes to prevent it from coming back. His greatest risks are a relapse, which decrease each year he gets clean scans.
It's been a LONG few months, but he's handled it better than his mom and me. I still get frustrated dealing with hospitals, and insurance companies, and scheduling, and miscommunications with the nurses, on top of juggling my own 15 year old and 11 year old girls. Realistically he's been incredibly blessed and lucky so far, so I try to shut up and not complain.
Thanks again for those who donated before, it paid rent a few months, and especially for those who send the good ole' T's and P's.
