skol asylum
Footballguy
Thoughts and prayers for the little guy and your family. Take it day by day and moment by moment and you'll get through this.
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Yet another (confirmed) Cancer journey (2 Viewers)
- Thread starter SpurrierisisGod
- Start date
SpurrierisisGod
Footballguy
bigbottom
Footballguy
Not when I click the link. Odd.
SpurrierisisGod
Footballguy
SpurrierisisGod
Footballguy
Little dude had what is supposed to be the worst of the treatments yesterday...crash cart waiting outside and all.
Took it like champ. For the most part anyway. Kinda crashed about an hour after the final drip but I was able to get him to go to sleep and he slept through the night (which means I got to sleep a little).
Good news - genetic tests came back with nothing out of the "norm" meaning we don't have to go super aggressive with chemo. On top of that his liver and spleen are showing signs of lessening swelling. Which is a sign in the right direction. Blood sugars quite a bit elevated but we knew this was coming with the steroids so we just have to watch his intake more carefully (we don't have sodas and cookies loading our pantry but this will be a more diabetic approach).
Thoughts/prayers/good vibes seem to be working. Thank you all for the positive vibes.
On a side note, he even got well wishes form Anthony Mackie, aka Falcon, on his little fb page. He just lit up at that.
Took it like champ. For the most part anyway. Kinda crashed about an hour after the final drip but I was able to get him to go to sleep and he slept through the night (which means I got to sleep a little).
Good news - genetic tests came back with nothing out of the "norm" meaning we don't have to go super aggressive with chemo. On top of that his liver and spleen are showing signs of lessening swelling. Which is a sign in the right direction. Blood sugars quite a bit elevated but we knew this was coming with the steroids so we just have to watch his intake more carefully (we don't have sodas and cookies loading our pantry but this will be a more diabetic approach).
Thoughts/prayers/good vibes seem to be working. Thank you all for the positive vibes.
On a side note, he even got well wishes form Anthony Mackie, aka Falcon, on his little fb page. He just lit up at that.
KingPrawn
Footballguy
Thanks for taking the time to keep us updated. Continued thoughts and prayers for the little guy and for your family. Stay strong
SpurrierisisGod
Footballguy
We are home. The twins are incredible. A lesson in humanity really. Was a complete cluster to break out of jail but he's at least happy to be back with his brother. We gave him some Mac and cheese for dinner and while eating he just blurts out "love you brother" and his twin, without even looking up from his Legos says "love you too".
No real news about blood counts or anything but it's good to be home. As much as I want to complain about that 1980s hard a$$ couch, I can't knowing how he probably feels.
This sucks. I want to let it all out but that's just not me. I'm the "tough guy" - spreadsheets, numbers, statistics etc. And he has all of a sudden taken to me over my wife (which is new to her). Think he likes the goofiness I can bring while also not sugar coating anything.
I've had some good convos with his twin recently, who has a LOT of questions. He can now tell you what different blood cells do (white blood cells are the "Gokus" of your body - dragon ball reference). He asks honest questions and gets honest answers. Wants to know every medicine his bro is taking and what it does to him.
My wife is waaaaay more emotional than I am. She is terrified we will forget something. I've spent tonight creating a dry erase board for all of his meds with how much he gets, what days, how many times a day etc. Oh, and he now also has long QT syndrome so has a beta blocker and his glucose is spiking so we get to finger prick him 4 times a day. Yay. I also made a list of rules for our older kids and anyone we may need to ask to watch him for a bit. That's how I cope I guess.
Again, thanks for everything - TPW and otherwise. His twin now wants to be a doctor and says he's going to fix "all of this".
No real news about blood counts or anything but it's good to be home. As much as I want to complain about that 1980s hard a$$ couch, I can't knowing how he probably feels.
This sucks. I want to let it all out but that's just not me. I'm the "tough guy" - spreadsheets, numbers, statistics etc. And he has all of a sudden taken to me over my wife (which is new to her). Think he likes the goofiness I can bring while also not sugar coating anything.
I've had some good convos with his twin recently, who has a LOT of questions. He can now tell you what different blood cells do (white blood cells are the "Gokus" of your body - dragon ball reference). He asks honest questions and gets honest answers. Wants to know every medicine his bro is taking and what it does to him.
My wife is waaaaay more emotional than I am. She is terrified we will forget something. I've spent tonight creating a dry erase board for all of his meds with how much he gets, what days, how many times a day etc. Oh, and he now also has long QT syndrome so has a beta blocker and his glucose is spiking so we get to finger prick him 4 times a day. Yay. I also made a list of rules for our older kids and anyone we may need to ask to watch him for a bit. That's how I cope I guess.
Again, thanks for everything - TPW and otherwise. His twin now wants to be a doctor and says he's going to fix "all of this".
Mrs. Rannous
Footballguy
This may be why he is sticking to you. Mr R goes all Mr Spock in emergencies. Then he apologizes for it because he thinks I may think that he doesn't care. I keep telling him I prefer the Spock stuff over weeping and wailing. I'm still not sure he believes me.
SpurrierisisGod
Footballguy
Funny, not so dunny story....
2 weekends ago before this all happened I was sitting in my back porch and her a rumble and some weird "cries" . Went out front and thought oh no someone's dog gor run over. I realized it was kids crying ran inside, yelled at my 19 yo son to come with me...
A family flipped their gator/4 wheeler and I took of running to them. Tried to calm them down (grandma seemed to be the only one hurt).
The middle kids ran to get mom and dad I guess. I made my son tend to the 1 yo who seemed ok. Don't let her move etc. Grandma kept trying to stand up. I just tried to calm her down. Cops came. 2 ambulances. 1 fire truck. Fight or flight I guess. Just enough 1st aid training to not freak out. Not sure what I was doing but that's me. Calm the situation. Then poop hit the fan wednesday and I'm a mess.
Mrs. Rannous
Footballguy
It usually hits Mr R later, too. I guess you just roll with that stuff, and that's okay.
SpurrierisisGod
Footballguy
Nothing super of note to report on. Had his 3rd chemo round Friday. Sat/sun/mon he is pretty wiped but he's been picking up late Monday and by Tuesday is pretty normal. Doc said his numbers are srill in the low range so infection is still a worry and we have to be ultra vigilant about hand washing and "squirty stuff" since his twin is still going to the petri dish called school.
The steroids have really gotten him. Aside from being hungry all of the time his face has gotten puffy. He looks like a little chipmunk now. BTW, he hates when you call him chipmunk. Stomach is still protruded but they said the liver and spleen seem to be going down in size.
I'm in charge of 3 U8 Boys Soccer teams (who are killing it by the way) and I got them all together pre game saturday since he obviously cant play anymore to color their hair orange and send him a video. He lights up when folks send him videos. It was pretty cool.
The steroids have really gotten him. Aside from being hungry all of the time his face has gotten puffy. He looks like a little chipmunk now. BTW, he hates when you call him chipmunk. Stomach is still protruded but they said the liver and spleen seem to be going down in size.
I'm in charge of 3 U8 Boys Soccer teams (who are killing it by the way) and I got them all together pre game saturday since he obviously cant play anymore to color their hair orange and send him a video. He lights up when folks send him videos. It was pretty cool.
SpurrierisisGod
Footballguy
Oh and we started online 1 on 1 school Wednesday and he loves it. She is super goofy and uses puppets and stuff so it's really engaging. 1st day was on a day my sister was here watching him and after the session he wanted to keep doing math. According to the teacher he did enough to carry him through what the class will be doing through November lol. So lots of reading and writing coming up.
SpurrierisisGod
Footballguy
Man, I missed this somehow and now seem insesitive. So sorry. Here's to hoping treatment goes smoothly and kick cancers a$$.
Tecumseh
Footballguy
I’m sure you know all this, but the prolonged QT is probably from the anti-nausea med Zofran. He needs to be getting Kytril, phenergan, Ativan, or some other antiemetic when he’s getting treatment. The steroids are what is jacking up his blood sugar. That should return to normal when he comes off the roids.
matttyl
Footballguy
No need to apologize at all. First treatment went well. We actually had a second opinion visit yesterday at John’s Hopkins where we didn’t get any new information, but the doctor had a far better bedside manner. Treatments will continue as scheduled for now, but having a second set of (highly trained) eyes looking at everything is making us all feel a bit better.
SpurrierisisGod
Footballguy
Been a rough few days...
I had soccer games to coach Saturday and everything seemed fine. Little man had started having issues walking but I was working with him on Quasi-squats, moving around (when I work from home we take a walk up the street after lunch) but it got worse. His legs were hurting. Like to to the point of screaming/crying.
Sunday we sat around, had a few beers and I was in bed early, maybe 9 ish. Wife woke me up at 2am to tell me he had a temp of 101. Emergency room here we come. Anything over 100.4 is emergency room qualification. I called the on call oncologist to let him know and after paper rock scissors (really an argument) about who is taking him, my wife drove him down.
Been in the hospital since. Fever keeps coming and going. Negative for anything viral. They are loading him woth antibiotics but as I left my wife and him this afternoon he spiked a 103 again. No answers yet.
Even worse...he can't come home until he has more blood transfusions (low counts). He can't have more transfusions until fever is gone. They can't tell what's causing the fevers. So he'll be there the whole week we are assuming.
Then the bad news...
His cancer cell count didn't come down enough after the initial doses. Came down a good bit, just not enough. So now he is in the high risk category. After his blood counts come up enough to go home, we will start 4 days a week IV chemo for 8 weeks. Ugh. Then logistics of that are driving my BP up.
Sorry. Wish I had a happier update. Although he's still taking it like a champ (except for the leg pain). I call him Thor now. He's been so so strong but then turned into chunky Thor. He gets it and he laughs...until I try to make him walk to the bathroom.
I had soccer games to coach Saturday and everything seemed fine. Little man had started having issues walking but I was working with him on Quasi-squats, moving around (when I work from home we take a walk up the street after lunch) but it got worse. His legs were hurting. Like to to the point of screaming/crying.
Sunday we sat around, had a few beers and I was in bed early, maybe 9 ish. Wife woke me up at 2am to tell me he had a temp of 101. Emergency room here we come. Anything over 100.4 is emergency room qualification. I called the on call oncologist to let him know and after paper rock scissors (really an argument) about who is taking him, my wife drove him down.
Been in the hospital since. Fever keeps coming and going. Negative for anything viral. They are loading him woth antibiotics but as I left my wife and him this afternoon he spiked a 103 again. No answers yet.
Even worse...he can't come home until he has more blood transfusions (low counts). He can't have more transfusions until fever is gone. They can't tell what's causing the fevers. So he'll be there the whole week we are assuming.
Then the bad news...
His cancer cell count didn't come down enough after the initial doses. Came down a good bit, just not enough. So now he is in the high risk category. After his blood counts come up enough to go home, we will start 4 days a week IV chemo for 8 weeks. Ugh. Then logistics of that are driving my BP up.
Sorry. Wish I had a happier update. Although he's still taking it like a champ (except for the leg pain). I call him Thor now. He's been so so strong but then turned into chunky Thor. He gets it and he laughs...until I try to make him walk to the bathroom.
SpurrierisisGod
Footballguy
Let's hope this one doesn't come through in German but I got the 3 u8 teams I manage to come together, color their hair orange (September is apparently leukemia month). It's a fb link so sorry if that's an issue.
SpurrierisisGod
Footballguy
So, we've been in the hospital since late Sunday. Fever of 101 sent us to the emergency room per protocol. They have been pumping him with antibiotics but fevers still come and go so there are looking for answers by what seems to be process of elimination. He will remain there until they can figure it out. On top of that he now has drop foot in both feet, lots of leg pain and can't walk.
But, a little bit of brightness. I'm pretty goofy. I've coached soccer for 28 years, a lot of that with younger kids. Not to pat myself on the back but I like to think I've got a good handle on what makes them tick.
As my wife and I were doing our "shift change" I was able to make him laugh. It's another FB link (sorry I don't have the time or energy to put it somewhere else) but if anyone wants to peer into how this little champ is taking things and needs a smile, check it out. Gives a little perspective on how we all nag about little things in life but here he is, going through what he is, never complaining and still had time for a good belly laugh.
Good laugh
But, a little bit of brightness. I'm pretty goofy. I've coached soccer for 28 years, a lot of that with younger kids. Not to pat myself on the back but I like to think I've got a good handle on what makes them tick.
As my wife and I were doing our "shift change" I was able to make him laugh. It's another FB link (sorry I don't have the time or energy to put it somewhere else) but if anyone wants to peer into how this little champ is taking things and needs a smile, check it out. Gives a little perspective on how we all nag about little things in life but here he is, going through what he is, never complaining and still had time for a good belly laugh.
Good laugh
SpurrierisisGod
Footballguy
So, still in the hospital. He developed abscesses in his legs and they determined it was staph. Changed antibiotics, added antibiotics still lingering. They drained some and he's been fine except for one spit near his groin.
Which means treatment has been delayed. Bthe oncologists are getting anxious as the initial phase only brought his cancer count to 0.4 and they were hoping/expecting to see 0.001. So we were supposed to switch to the more aggressive path but this infection just won't go away. The infectious Disease doctors are fighting any chemo until the infection is controlled.
So, the docs agreed to start immuno therapy- a drug that targets the specific type of cancer cells he has. Sounds great right? They never see side effects from this. Guess what? He lasted maybe 8 hours on what is supposed to be a slow constant drip for 4 weeks.
They have to monitor him in icu for 2 days just to make sure and he lasted 1. Back up to regular room for 2 days and now back down today to icu to try same drug at lower dose. 2-3 days in icu again. Then probably 2 weeks of iv antibiotics because of the staph.
I hate to even say it because of what he's going through but it is exhausting. My wife and I have slept in the same bed a total of 1 time the last month and that was last night when a friend offered to stay (no dots). I had to go buy an air mattress because the coach/bed is so awful and it looks like we will be rotating nights for a while.
I have to give credit to my wife though. She hasn't given me much grief about my normal day to day stuff. On top of regular work I have 3 U8 Boys Soccer teams that will wrap up their season in a week or so (his twin is in one of them). I might get a week respite then girls high tryouts are a week from Monday. I feel like I should be at the hospital a little more but I'm trying to keep a little normalcy for the twin and my high school daughter.
Which means treatment has been delayed. Bthe oncologists are getting anxious as the initial phase only brought his cancer count to 0.4 and they were hoping/expecting to see 0.001. So we were supposed to switch to the more aggressive path but this infection just won't go away. The infectious Disease doctors are fighting any chemo until the infection is controlled.
So, the docs agreed to start immuno therapy- a drug that targets the specific type of cancer cells he has. Sounds great right? They never see side effects from this. Guess what? He lasted maybe 8 hours on what is supposed to be a slow constant drip for 4 weeks.
They have to monitor him in icu for 2 days just to make sure and he lasted 1. Back up to regular room for 2 days and now back down today to icu to try same drug at lower dose. 2-3 days in icu again. Then probably 2 weeks of iv antibiotics because of the staph.
I hate to even say it because of what he's going through but it is exhausting. My wife and I have slept in the same bed a total of 1 time the last month and that was last night when a friend offered to stay (no dots). I had to go buy an air mattress because the coach/bed is so awful and it looks like we will be rotating nights for a while.
I have to give credit to my wife though. She hasn't given me much grief about my normal day to day stuff. On top of regular work I have 3 U8 Boys Soccer teams that will wrap up their season in a week or so (his twin is in one of them). I might get a week respite then girls high tryouts are a week from Monday. I feel like I should be at the hospital a little more but I'm trying to keep a little normalcy for the twin and my high school daughter.
SpurrierisisGod
Footballguy
The killer part....
Me and his twin were supposed to run by early tomorrow to drop of his tablet, "spiky hair stuff" since he got a Mohawk and some boxers I found for him (been struggling with walking so pee breaks are basically in that angled bed cup). Well since they took him back down to icu his twin can't come in and he got upset. So we face timed and he perked back up.
As I'm getting the twin set for bed I said "you look sad. What's wrong?" I could tell he'd been crying (must've been quietly because I didn't here him).
"I miss my brother"
Me and his twin were supposed to run by early tomorrow to drop of his tablet, "spiky hair stuff" since he got a Mohawk and some boxers I found for him (been struggling with walking so pee breaks are basically in that angled bed cup). Well since they took him back down to icu his twin can't come in and he got upset. So we face timed and he perked back up.
As I'm getting the twin set for bed I said "you look sad. What's wrong?" I could tell he'd been crying (must've been quietly because I didn't here him).
"I miss my brother"
Mrs. Rannous
Footballguy
I reckon you folks did something right here. That's a big deal.
Here's hoping he can get back to the "normal" treatments soon. ICU is just not fun at all.
SpurrierisisGod
Footballguy
Still in the hospital but getting better. He didn't react well with the immuno therapy so we are now on 1/3 dose and he is doing better. Drained some abscesses and seem to have the infection under control. We even took a lap around the halls today with use of a walker. He can now take pills (which impressed the nurses and docs and is pretty pain free other than drop foot in his left foot so he can't stretch it all the down.
He's been a trooper. We can tell he's matured past his twin (who now has a sinus infection yay). Nothing phases him anymore and I keep pushing him to do more things. Our last convo before the wife and I switched up was "it feels good to do stuff for yourself again doesn't it?" "Yeah".
Funny thing about the walk arounds... I asked him if he wanted to put on some shorts and he said no. So I asked if he's OK just walking around in his undies and he said "duh". Okay then...show off those marvel boxer briefs little dude.
He's been a trooper. We can tell he's matured past his twin (who now has a sinus infection yay). Nothing phases him anymore and I keep pushing him to do more things. Our last convo before the wife and I switched up was "it feels good to do stuff for yourself again doesn't it?" "Yeah".
Funny thing about the walk arounds... I asked him if he wanted to put on some shorts and he said no. So I asked if he's OK just walking around in his undies and he said "duh". Okay then...show off those marvel boxer briefs little dude.
Mrs. Rannous
Footballguy
He obviously needs "special" socks and underwear for Christmas. Those Incrdible Hulk briefs will look fantastic.
SpurrierisisGod
Footballguy
Time for an update...
He is doing well. We are getting close to the maintenance phase which is when treatments slow down. We started the next phase last week which is a 24hr chemo drip then watch numbers for kidney function. We We there til Friday. He gets a week off and we go again Monday. 4 times total. Thos is when either me or my wife has to spend the night until he can go home so we swap days here and there.
He's taken it like a champ... no nausea or anything other than a bit of the poops. I just hope it keeps going this way as opposed to the horror stories of chemo you usually hear.
One cool thing (careful, onions may be in the room or some dust in your eyes)....
The Senior Bowl had me submit a write up about him. We just got the video that some players put together. We put it on the TV and recorded the reaction. Fb link with both vids https://www.facebook.com/share/p/6oCTdsUWKYVKRJs2/?mibextid=oFDknk
Youtube link of the senior bpwl vid:
youtu.be
He is doing well. We are getting close to the maintenance phase which is when treatments slow down. We started the next phase last week which is a 24hr chemo drip then watch numbers for kidney function. We We there til Friday. He gets a week off and we go again Monday. 4 times total. Thos is when either me or my wife has to spend the night until he can go home so we swap days here and there.
He's taken it like a champ... no nausea or anything other than a bit of the poops. I just hope it keeps going this way as opposed to the horror stories of chemo you usually hear.
One cool thing (careful, onions may be in the room or some dust in your eyes)....
The Senior Bowl had me submit a write up about him. We just got the video that some players put together. We put it on the TV and recorded the reaction. Fb link with both vids https://www.facebook.com/share/p/6oCTdsUWKYVKRJs2/?mibextid=oFDknk
Youtube link of the senior bpwl vid:
A special surprise for Kruz!
youtu.be
FarFromHome
Footballguy
Late to the thread. Thanks for sharing. Breaks my heart when it's children. So sad. As someone who recently went through a cancer recovery with my wife I can emphasize the emotions. It just feels so different with children. Stay strong man, sounds like your role is to support and be the rock.
SpurrierisisGod
Footballguy
Thanks for the kind words.
There's so much more going on but it seems rather unimportant. You know since it was your wife...it doesn't seem right to post a "whoa is me" type post. He is doing as well as he can, the rest is immaterial.
I do what I do. My wife too. And we just survive....day by day.
bigbottom
Footballguy
Time for an update...
He is doing well. We are getting close to the maintenance phase which is when treatments slow down. We started the next phase last week which is a 24hr chemo drip then watch numbers for kidney function. We We there til Friday. He gets a week off and we go again Monday. 4 times total. Thos is when either me or my wife has to spend the night until he can go home so we swap days here and there.
He's taken it like a champ... no nausea or anything other than a bit of the poops. I just hope it keeps going this way as opposed to the horror stories of chemo you usually hear.
One cool thing (careful, onions may be in the room or some dust in your eyes)....
The Senior Bowl had me submit a write up about him. We just got the video that some players put together. We put it on the TV and recorded the reaction. Fb link with both vids https://www.facebook.com/share/p/6oCTdsUWKYVKRJs2/?mibextid=oFDknk
Youtube link of the senior bpwl vid:
A special surprise for Kruz!
What a great video. Continued prayers for Kruz - sounds like he is indeed a champ.
Time for an update...
He is doing well. We are getting close to the maintenance phase which is when treatments slow down. We started the next phase last week which is a 24hr chemo drip then watch numbers for kidney function. We We there til Friday. He gets a week off and we go again Monday. 4 times total. Thos is when either me or my wife has to spend the night until he can go home so we swap days here and there.
He's taken it like a champ... no nausea or anything other than a bit of the poops. I just hope it keeps going this way as opposed to the horror stories of chemo you usually hear.
One cool thing (careful, onions may be in the room or some dust in your eyes)....
The Senior Bowl had me submit a write up about him. We just got the video that some players put together. We put it on the TV and recorded the reaction. Fb link with both vids https://www.facebook.com/share/p/6oCTdsUWKYVKRJs2/?mibextid=oFDknk
Youtube link of the senior bpwl vid:
A special surprise for Kruz!
Thank you for sharing. Prayers for you and him and all involved. Much love.
Snotbubbles
Footballguy
If it's any consolation, my good friend's child had Leukemia, went through all the treatments and has been in remission for many years now.
I believe the University of Pennsylvania has done some groundbreaking treatments on Leukemia.
SpurrierisisGod
Footballguy
We did some immuno therapy treatment after the first month due to him getting a staph infection. Apparently it's safer than starting up chemo while he was fighting staph and that's what put him in to initial "remission". I'm like why aren't we just using that?
After reading up on it, studies have only been done as it was used as a last resort type of thing and not as an initial treatment as part of protocol.
But it did its job.
