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Yet another (confirmed) Cancer journey (1 Viewer)

SpurrierisisGod

SpurrierisisGod

Footballguy
Not real sure where to start here without getting too long winded but warning...long post. Also, to be clear, we won't be sure until the bone marrow test tomorrow but cancer has hit our family most likely and to an innocent child that doesn't deserve any of this.

Short version of the beginning: Close to 4 years ago we got a call that my nephews (twins) either needed to come stay with us or they were going into foster care with a 99% chance they would be split up. We were on our way home from my sister's birthday dinner (worst I've ever had at Red Lobster btw). Obviously, we turned the car around, met the social care worker in the Walmart parking lot next to the van they had been living in and took them home with us.

Twins were just shy of 3, our biological kids were 15 and 13, we live in a 2000 sf 3 bedroom house. No idea how it was going to work but we were determined to help mom figure out the world and get her kids back. This was just temporary. Or so we thought.

Biological dad wasn't going to be any help. We knew that. Mom had a shot. Until she didn't. Too lazy maybe. Too incompetent maybe. Just never took the initiative to do even the simplest of tasks put in front of her by the social worker. Then covid hit. Hearings pushed back. Mom couldn't keep a job or steady place to live.

Here we are 4 years later. Havent heard from mom in over 2.5 years. Just finally just gave us custody 1.5 years ago. It's to the point they have started calling us mom and dad. In fact, at soccer practice last Wednesday (I'm the coach), we had a new kid come to check out practice. During a water break I overheard Twin B telling the new kid "the coach is my dad". I melted a little.

Fast forward to June of this year...
Boys have had their share of strep, sniffles, whatever but for the most part all boy and definitely twins. They feed off of each other and are identical in looks but definitely not personality. They play soccer. Love doing push-ups and riding scooters. Then Twin A got what we thought was strep yet again. Took him to the doc but he tested negative for strep/flu/covid. We got the "it's a virus...fluids...Tylenol...Yada yada. If he's not better in 2 weeks come back."

2 weeks later, not better so we head back. They did a blood test. Ugh, Mono. Could be 4-8 weeks. Limit activity. Rest andhatever else the PA said. A month later and no real change my wife takes him back and requests the doctor and not PA. "I assure you it's all just part of Mono".

About 2-3 weeks ago, he got real lethargic. Swollen belly. Kinda pale looking. School called and said he had a fever. We called the doc office twice and left a message. They never called back. This weekend we ran into a nurse friend who suggested to just keep calling and demand an appointment. That was today.

I was at work, my wife took Twin A to his appointment (with PA and not the doc no less) who ordered blood work and an ultrasound. While waiting for the ultrasound, the PA got the blood results and said to take him to a different hospital to have them run and confirm some tests due to abnormal blood counts.

This whole time I'm at work trying to pry info from my wife - "what's low? Is it red blood cell? White blood cell?" I can't get a good answer so I tell my boss I have to go and meet them. As I'm pulling into the parking lot, I get the "I NEED YOU HERE NOW!!!" text.

I walk in and can see my wife in tears standing next to a doctor yet I can't get in due to sign in/metal detector/wrist band protocols and I'm yelling "THEY ARE RIGHT THERE!"

Finally I get through and it's the dreaded "come into this room" feel. Sure enough, the doctor is almost certain with all 3 blood counts (red, hemo and white) being low that it is a form of Leukemia. He said he had a look under the microscope and feels like it's the "better" of the 2 forms which has a high cure rate at this age but little dude has to get blood infusion and then a bone marrow test tomorrow to confirm.

If confirmed tomorrow, a spinal tap and port insertion is scheduled for Friday with chemo to start immediately.

This post turned out way longer than I intended but it felt good to type out. My wife is a basket case. I was stoic (as much as I could be) but she couldn't even speak when doctors and nurses came in to ask questions. I was stoic that is, until we face timed his twin. The bond those 2 have is incredible. As my wife took the phone to continue the conversation with the other kids, I could see in Twin A's eyes that he just wanted to be home with his brother. He's been so brave so far. Got blood taken twice with out even flinching. Understands he's sick and it may be a long recovery. He just gave me a thumbs up after I hugged him and told him I'd be back in the morning.

Not really sure where I'm going woth this. Not sure if I intend to use it as a log during his recovery or if I just need to vent with out publicly plastering on Facebook. Cancer sucks. For everolyone involved. After watching my mom whittle away from breast cancer I already know. Little guy didn't deserve this. If anyone did it was/is me. But we'll get him through this. Some how, some way we will kick cancers a$$. Maybe, just maybe, I can post tomorrow and say its just a tummy ache.
 
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There's a pit in my stomach just from reading that. I'm sorry that you and your family have to go through this. Man......

You have all of FBG on your side pulling for that little guy.
 
Deepest thoughts, prayers, and positive vibes to you and your family. What you guys have done for those twins is so beautiful and admirable. Continue to be as strong and as positive as possible as you go through this. It won’t be easy—but I do think it’s the best state of mind to be in for everybody’s sake.

As a sidenote, when I was young—the doctors were convinced that I had leukemia. I would get pale, would be lethargic, and would get random horrid bloody noses that would last for hours on end. My platelet and white blood cell counts would range from being low to insanely low. I ended up being diagnosed with a condition called ITP (they don’t know what causes it)—but it basically means my blood is thin and my platelet count is low. It’s something that I still have to manage—but knowing how to do it—makes it a lot better. I wouldn’t assume cancer until you get that diagnosis. Good luck and know that you have the power of the FBG community behind you.
 
Sorry your family is dealing with this.

The good news is, the prognosis for childhood leukemias is excellent, especially ALL, the most common type. And if he doesn’t tolerate or fails chemotherapy, requiring stem cell transplantation, his twin can likely be the donor.
 
ChiefD said:
Your nurse friend and your diligence is saving that boy. Be strong. Fight. Let us know what you need.

The fact that you are there in the first place says EVERYTHING about you and your wife.
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I appreciate that. Like I said not sure where I was going with this but I know I'm not the only here that has had to deal with this unfortunately. First reply to my rant/long story and it really hit home. Thank you.
 
Terminalxylem said:
Sorry your family is dealing with this.

The good news is, the prognosis for childhood leukemias is excellent, especially ALL, the most common type. And if he doesn’t tolerate or fails chemotherapy, requiring stem cell transplantation, his twin can likely be the donor.
Click to expand...
I just talked to my daughter about this. She's taking it hard. As difficult/weird as the situation is, our older kids never too k offense and look at them as siblings... not intruders. Donor/transplant is something I hope we don't have to deal with but we are starting the cinvo early. We are the type of parents that aren't going to sugar coat things.
 
My heart goes out to you and your family. Whatever the diagnosis, lean on us here. We’ll be here for whatever comes next.
 
So sorry you and your family are going through this. There’s a good amount of info and other posters who have gone through this around here, so please reach out with any questions or just vent away. We’re all behind you on this.
 
jvdesigns2002 said:
Deepest thoughts, prayers, and positive vibes to you and your family. What you guys have done for those twins is so beautiful and admirable. Continue to be as strong and as positive as possible as you go through this. It won’t be easy—but I do think it’s the best state of mind to be in for everybody’s sake.

As a sidenote, when I was young—the doctors were convinced that I had leukemia. I would get pale, would be lethargic, and would get random horrid bloody noses that would last for hours on end. My platelet and white blood cell counts would range from being low to insanely low. I ended up being diagnosed with a condition called ITP (they don’t know what causes it)—but it basically means my blood is thin and my platelet count is low. It’s something that I still have to manage—but knowing how to do it—makes it a lot better. I wouldn’t assume cancer until you get that diagnosis. Good luck and know that you have the power of the FBG community behind you.
Click to expand...
Went through this exact same thing with my daughter. Pretty terrifying being in the hospital with a 2 year old while they’re testing for all sorts of awful stuff including HIV. For some kids it’s a one time occurrence. My daughter was one of the lucky ones that had it for several years but eventually grew out of it.

As others have said, even if it’s leukemia, it’s way more treatable than it once was. You’re doing an amazing thing for that child just by being there and supporting him Spurrier.
 
Prayers from the Alabama cohort. Hoping for the best for your little man.
 
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Goodness, must be dusty in my office this morning.

We're here for you. Rant here all you want. Thoughts and prayers. You got this.
 
I already knew you were a good guy based on your avatar, but this definitely confirms it.

Cancer is the worst, especially in kids. Little man sounds like a tough kid, and he's lucky to have you and your wife. With his toughness and your caring you guys have a great start on beating this.
 
God bless you, your son, and your family. So sorry to hear about this.
 
So sorry, and sending you and him and the whole family some warm thoughts from afar.
 
Update:

Man I hate to be Debbie downer...
Confirmed leukemia. 99% certain it's ALL and not AML which is the lesser of 2 evils.

Kind of a comedy of errors today as we awaited official results with a port install/spinal tap already scheduled for today on the assumption of official results. Went down for the port install where the spinal tap would also be done (spinal tap to check if cancerous cells had migrated). The anesthesiologist did not like the ekg so mission aborted and he was sent back to his room.

The oncologist and cardiologist were not pleased. 1. The cardiologist saw no abnormalities and 2. Oncologist wanted to start chemo today. We agreed to let them go forward with the tap and 1st round of chemo and schedule the port install later.

Little dude is a trooper. Wanted no pain meds after the bone marrow test. Has has to go #1 and #2 in front of multiple folks in the room. What's he worried about? When he can get out of that gown and put his undies and shorts back on...and when he can eat. The only tear I've seen is when the nurse was slow to bring back the pee canister and he thought he might pee in the bed.

Long road ahead but doc seems to think this will be standard op in the sense that 92% of kids his age kick this thing with his stats. No doubt he will bump that percentage up a notch. His twin brother is beside himself. Told me today he prayed his brother wouldn't have to have "surgery". I got home today to a manilla envelope full of homemade cards that their 2 classes (we separate them at school hoping to create individuals) made.

I'm a coach by nature so I can matter of factly explain what's going on and he seems to get it. My wife is waaaaaaay more emotional and the difference is starting to rear its ugly head. We will get through this but there will be internal battles for sure. Lots of crappy phone calls and discussions in the upcoming week.

I wish I could post a happier update but there are silver linings when you read between the lines. Holding on to those for now and being strong (or at least feigning strength) when it matters. Thanks for all of the encouraging words. He will ring that bell.
 
Get the plan. Work the plan. And don’t forget to have fun along the way. I know that may seem almost impossible right now, but those fun moments will be there. Embrace them.

I will be keeping you and your family in my thoughts and daily prayers. And don’t ever hesitate to reach out if you need someone to talk (or vent) to.
 
Might want to keep those twins together for now. I think I would ask them separately how they would feel about that.

Best wishes.
 
SpurrierisisGod said:
Update:

Man I hate to be Debbie downer...
Confirmed leukemia. 99% certain it's ALL and not AML which is the lesser of 2 evils.

Kind of a comedy of errors today as we awaited official results with a port install/spinal tap already scheduled for today on the assumption of official results. Went down for the port install where the spinal tap would also be done (spinal tap to check if cancerous cells had migrated). The anesthesiologist did not like the ekg so mission aborted and he was sent back to his room.

The oncologist and cardiologist were not pleased. 1. The cardiologist saw no abnormalities and 2. Oncologist wanted to start chemo today. We agreed to let them go forward with the tap and 1st round of chemo and schedule the port install later.

Little dude is a trooper. Wanted no pain meds after the bone marrow test. Has has to go #1 and #2 in front of multiple folks in the room. What's he worried about? When he can get out of that gown and put his undies and shorts back on...and when he can eat. The only tear I've seen is when the nurse was slow to bring back the pee canister and he thought he might pee in the bed.

Long road ahead but doc seems to think this will be standard op in the sense that 92% of kids his age kick this thing with his stats. No doubt he will bump that percentage up a notch. His twin brother is beside himself. Told me today he prayed his brother wouldn't have to have "surgery". I got home today to a manilla envelope full of homemade cards that their 2 classes (we separate them at school hoping to create individuals) made.

I'm a coach by nature so I can matter of factly explain what's going on and he seems to get it. My wife is waaaaaaay more emotional and the difference is starting to rear its ugly head. We will get through this but there will be internal battles for sure. Lots of crappy phone calls and discussions in the upcoming week.

I wish I could post a happier update but there are silver linings when you read between the lines. Holding on to those for now and being strong (or at least feigning strength) when it matters. Thanks for all of the encouraging words. He will ring that bell.
Click to expand...
ALL is about the best you hope for, given the circumstances.

Sorry you had to experience the stupidity of modern medicine. He didn’t need an EKG prior to a spinal tap, nor did a radiologist need to do the procedure. But everything is so compartmentalized nowadays, things that used be done by one physician involve multiple specialists. This results in excess testing and associated costs, while potentially delaying care. At least the important stuff got done before the weekend, so he can start chemo ASAP.

Good luck moving forward.
 
SpurrierisisGod said:
Update:

Man I hate to be Debbie downer...
Confirmed leukemia. 99% certain it's ALL and not AML which is the lesser of 2 evils.

Kind of a comedy of errors today as we awaited official results with a port install/spinal tap already scheduled for today on the assumption of official results. Went down for the port install where the spinal tap would also be done (spinal tap to check if cancerous cells had migrated). The anesthesiologist did not like the ekg so mission aborted and he was sent back to his room.

The oncologist and cardiologist were not pleased. 1. The cardiologist saw no abnormalities and 2. Oncologist wanted to start chemo today. We agreed to let them go forward with the tap and 1st round of chemo and schedule the port install later.

Little dude is a trooper. Wanted no pain meds after the bone marrow test. Has has to go #1 and #2 in front of multiple folks in the room. What's he worried about? When he can get out of that gown and put his undies and shorts back on...and when he can eat. The only tear I've seen is when the nurse was slow to bring back the pee canister and he thought he might pee in the bed.

Long road ahead but doc seems to think this will be standard op in the sense that 92% of kids his age kick this thing with his stats. No doubt he will bump that percentage up a notch. His twin brother is beside himself. Told me today he prayed his brother wouldn't have to have "surgery". I got home today to a manilla envelope full of homemade cards that their 2 classes (we separate them at school hoping to create individuals) made.

I'm a coach by nature so I can matter of factly explain what's going on and he seems to get it. My wife is waaaaaaay more emotional and the difference is starting to rear its ugly head. We will get through this but there will be internal battles for sure. Lots of crappy phone calls and discussions in the upcoming week.

I wish I could post a happier update but there are silver linings when you read between the lines. Holding on to those for now and being strong (or at least feigning strength) when it matters. Thanks for all of the encouraging words. He will ring that bell.
Click to expand...
**** cancer. You vent any way you want to Here. This is safe space. You need something from this motley crew of Fbgs, more likely than not, we’ll deliver. **** cancer.
 
Terminalxylem said:
SpurrierisisGod said:
Update:

Man I hate to be Debbie downer...
Confirmed leukemia. 99% certain it's ALL and not AML which is the lesser of 2 evils.

Kind of a comedy of errors today as we awaited official results with a port install/spinal tap already scheduled for today on the assumption of official results. Went down for the port install where the spinal tap would also be done (spinal tap to check if cancerous cells had migrated). The anesthesiologist did not like the ekg so mission aborted and he was sent back to his room.

The oncologist and cardiologist were not pleased. 1. The cardiologist saw no abnormalities and 2. Oncologist wanted to start chemo today. We agreed to let them go forward with the tap and 1st round of chemo and schedule the port install later.

Little dude is a trooper. Wanted no pain meds after the bone marrow test. Has has to go #1 and #2 in front of multiple folks in the room. What's he worried about? When he can get out of that gown and put his undies and shorts back on...and when he can eat. The only tear I've seen is when the nurse was slow to bring back the pee canister and he thought he might pee in the bed.

Long road ahead but doc seems to think this will be standard op in the sense that 92% of kids his age kick this thing with his stats. No doubt he will bump that percentage up a notch. His twin brother is beside himself. Told me today he prayed his brother wouldn't have to have "surgery". I got home today to a manilla envelope full of homemade cards that their 2 classes (we separate them at school hoping to create individuals) made.

I'm a coach by nature so I can matter of factly explain what's going on and he seems to get it. My wife is waaaaaaay more emotional and the difference is starting to rear its ugly head. We will get through this but there will be internal battles for sure. Lots of crappy phone calls and discussions in the upcoming week.

I wish I could post a happier update but there are silver linings when you read between the lines. Holding on to those for now and being strong (or at least feigning strength) when it matters. Thanks for all of the encouraging words. He will ring that bell.
Click to expand...
ALL is about the best you hope for, given the circumstances.

Sorry you had to experience the stupidity of modern medicine. He didn’t need an EKG prior to a spinal tap, nor did a radiologist need to do the procedure. But everything is so compartmentalized nowadays, things that used be done by one physician involve multiple specialists. This results in excess testing and associated costs, while potentially delaying care. At least the important stuff got done before the weekend, so he can start chemo ASAP.

Good luck moving forward.
Click to expand...
This guy knows stuff. I know. I tore my rotator cuff while skiing with him. most amusing moment? When he told me that he and his wife, and their friend were all doctors…but none of them were versed ER/trauma med. I just kept skiing. Hurt like a sumbiatch. can’t wait to ski with him again!

Hopefully a little humor helps.
 
SpurrierisisGod said:
Update:

Man I hate to be Debbie downer...
Confirmed leukemia. 99% certain it's ALL and not AML which is the lesser of 2 evils.

Kind of a comedy of errors today as we awaited official results with a port install/spinal tap already scheduled for today on the assumption of official results. Went down for the port install where the spinal tap would also be done (spinal tap to check if cancerous cells had migrated). The anesthesiologist did not like the ekg so mission aborted and he was sent back to his room.

The oncologist and cardiologist were not pleased. 1. The cardiologist saw no abnormalities and 2. Oncologist wanted to start chemo today. We agreed to let them go forward with the tap and 1st round of chemo and schedule the port install later.

Little dude is a trooper. Wanted no pain meds after the bone marrow test. Has has to go #1 and #2 in front of multiple folks in the room. What's he worried about? When he can get out of that gown and put his undies and shorts back on...and when he can eat. The only tear I've seen is when the nurse was slow to bring back the pee canister and he thought he might pee in the bed.

Long road ahead but doc seems to think this will be standard op in the sense that 92% of kids his age kick this thing with his stats. No doubt he will bump that percentage up a notch. His twin brother is beside himself. Told me today he prayed his brother wouldn't have to have "surgery". I got home today to a manilla envelope full of homemade cards that their 2 classes (we separate them at school hoping to create individuals) made.

I'm a coach by nature so I can matter of factly explain what's going on and he seems to get it. My wife is waaaaaaay more emotional and the difference is starting to rear its ugly head. We will get through this but there will be internal battles for sure. Lots of crappy phone calls and discussions in the upcoming week.

I wish I could post a happier update but there are silver linings when you read between the lines. Holding on to those for now and being strong (or at least feigning strength) when it matters. Thanks for all of the encouraging words. He will ring that bell.
Click to expand...
Just wanted you and your family to know that you are all in my prayers.
 
Little dude has been chugging along until today. I went in to work for a bit 1. So I don't use up all of my pto yet and 2. To discuss how work can accommodate me. Hos platelet count dropped some which made him tired. I had to wrap up some loose ends with the soccer club to relieve some of my duties and had a high school soccer parent meeting to run so I couldn't make it back up there. Tomorrow he gets what may be the worst of the drugs he will get and definitely the worst to this point. We've been alternating nights staying at the hospital. I barely slept last night.

My work has said all of the right things. I can probably work from home more as needed. To be fair my wife's work has said all of the right things too but She may have to drop a day or 2 a week though. We were already kind of paycheck to paycheck already before we took the twins in but now it'll be even worse. I'm dreading the phone calls to my student loans and cc companies that I just may not be able to pay them for a bit. Student loan company has already been non-helpful with other stuff (2 cars transmission went out. I fixed one, paid a lot for the other). We've always been able to figure it out but covid hit our account pretty heavy.

We did have a friend set up a meal train so we have some meals covered for a bit and I think it even has donations? Not sure how that works. I've got a crap ton of spaghetti in the fridge and I think someone has signed up every day this week.

On a happier note, we were able to let his twin come hang out a little yesterday - he's been bouncing off the walls. It was a sweet moment. They have such a bond and they both mostly understand the gravity of it for the most part. Keeping them apart is tough.
 
DA RAIDERS said:
SpurrierisisGod said:
Update:

Man I hate to be Debbie downer...
Confirmed leukemia. 99% certain it's ALL and not AML which is the lesser of 2 evils.

Kind of a comedy of errors today as we awaited official results with a port install/spinal tap already scheduled for today on the assumption of official results. Went down for the port install where the spinal tap would also be done (spinal tap to check if cancerous cells had migrated). The anesthesiologist did not like the ekg so mission aborted and he was sent back to his room.

The oncologist and cardiologist were not pleased. 1. The cardiologist saw no abnormalities and 2. Oncologist wanted to start chemo today. We agreed to let them go forward with the tap and 1st round of chemo and schedule the port install later.

Little dude is a trooper. Wanted no pain meds after the bone marrow test. Has has to go #1 and #2 in front of multiple folks in the room. What's he worried about? When he can get out of that gown and put his undies and shorts back on...and when he can eat. The only tear I've seen is when the nurse was slow to bring back the pee canister and he thought he might pee in the bed.

Long road ahead but doc seems to think this will be standard op in the sense that 92% of kids his age kick this thing with his stats. No doubt he will bump that percentage up a notch. His twin brother is beside himself. Told me today he prayed his brother wouldn't have to have "surgery". I got home today to a manilla envelope full of homemade cards that their 2 classes (we separate them at school hoping to create individuals) made.

I'm a coach by nature so I can matter of factly explain what's going on and he seems to get it. My wife is waaaaaaay more emotional and the difference is starting to rear its ugly head. We will get through this but there will be internal battles for sure. Lots of crappy phone calls and discussions in the upcoming week.

I wish I could post a happier update but there are silver linings when you read between the lines. Holding on to those for now and being strong (or at least feigning strength) when it matters. Thanks for all of the encouraging words. He will ring that bell.
Click to expand...
**** cancer. You vent any way you want to Here. This is safe space. You need something from this motley crew of Fbgs, more likely than not, we’ll deliver. **** cancer.
Click to expand...
So nice you have to say it thrice.

**** cancer.
 
Mrs. Rannous said:
Why is the link in German? Bist du Deutsch?
Click to expand...

Huh, the linked content is not in German though the link text that appears is - weird. Anyway, if you click the meal link on the FB page, you can sign up for a meal or make a donation.
 
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