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Son Diagnosed with Acute Leukemia (1 Viewer)

steelerfan1

Footballguy
Toren will be in my prayers Fred. sorry to hear. It always seemed to me that children are warriors going through something like this. I’m sure Toren will be tackling this with a warrior spirit.
 

krista4

Footballguy
Aw, fred, you're one of my favorites, so I know Toren must be a fabulous little guy. Sending all my best healing thoughts and wishes to your family.
 

fred_1_15301

Footballguy
Quick update - it's looking like he'll start chemo on Tuesday. The next 8-9 months of treatment will be intense for him (all of us). He'll be dealing with major fatigue, nausea, loss of appetite/weight lost, hair loss, etc. But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer. The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him. I would do anything to be able to fast forward a year in time. Thankfully we have tons of support from family and friends. We've got this! Thanks again for all of the great advice in this thread. I love this place.
 

bigbottom

I put on my robe and wizard hat
Quick update - it's looking like he'll start chemo on Tuesday. The next 8-9 months of treatment will be intense for him (all of us). He'll be dealing with major fatigue, nausea, loss of appetite/weight lost, hair loss, etc. But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer. The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him. I would do anything to be able to fast forward a year in time. Thankfully we have tons of support from family and friends. We've got this! Thanks again for all of the great advice in this thread. I love this place.

Know the plan, work the plan. There is comfort in that. Keep us posted and lean on us when you need to.
 

Galileo

Footballguy
Quick update - it's looking like he'll start chemo on Tuesday. The next 8-9 months of treatment will be intense for him (all of us). He'll be dealing with major fatigue, nausea, loss of appetite/weight lost, hair loss, etc. But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer. The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him. I would do anything to be able to fast forward a year in time. Thankfully we have tons of support from family and friends. We've got this! Thanks again for all of the great advice in this thread. I love this place.
Keep your eye on the prize!
 

Mrs. Rannous

Footballguy
The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him.
Sounds like it's time for a small treat that he can tolerate and can look forward to. A LEGO set or somesuch?

All y'all need one of those sometimes. (The treat, not the LEGO. I do like that Batmobile, though.)
 

zamboni

Footballguy
Fred, I am so sorry to hear this - must be the most unbelievable pain to see a child go through this. After reading towards the end of the thread, it sounds like there is some optimistic light at the end of the tunnel, so stay positive for your son, your family and for you. Please keep us updated.
 

Tecumseh

Footballguy
Quick update - it's looking like he'll start chemo on Tuesday. The next 8-9 months of treatment will be intense for him (all of us). He'll be dealing with major fatigue, nausea, loss of appetite/weight lost, hair loss, etc. But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer. The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him. I would do anything to be able to fast forward a year in time. Thankfully we have tons of support from family and friends. We've got this! Thanks again for all of the great advice in this thread. I love this place.
Just some words of advice- one of the biggest ways that you and your wife will be able to help is with daily activities and infection control. If he’s like most 8yr olds, there will definitely be days where he doesn’t want to bathe (or be wiped down with CHG wipes), brush his teeth, or do his laps (getting up out of bed to walk to keep his lungs healthy).

One of the biggest dangers will be the risk of a central line infection that leads to a systemic infection (because his immune system will be wiped out). The more that you can do to help encourage excellent hygiene, the better.
 

fred_1_15301

Footballguy
Quick update - it's looking like he'll start chemo on Tuesday. The next 8-9 months of treatment will be intense for him (all of us). He'll be dealing with major fatigue, nausea, loss of appetite/weight lost, hair loss, etc. But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer. The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him. I would do anything to be able to fast forward a year in time. Thankfully we have tons of support from family and friends. We've got this! Thanks again for all of the great advice in this thread. I love this place.
Just some words of advice- one of the biggest ways that you and your wife will be able to help is with daily activities and infection control. If he’s like most 8yr olds, there will definitely be days where he doesn’t want to bathe (or be wiped down with CHG wipes), brush his teeth, or do his laps (getting up out of bed to walk to keep his lungs healthy).

One of the biggest dangers will be the risk of a central line infection that leads to a systemic infection (because his immune system will be wiped out). The more that you can do to help encourage excellent hygiene, the better.
Yeah our doctor went over this yesterday and basically said the exact same thing. This will be a challenge for us because his hygiene in general has always been poor. After he goes to the bathroom, we always have to remind him to wash his hands. My wife and I will just need to really stay on top of him now. We will pound in his head how important it is to take care of his body. Thanks for the advice.
 

Tecumseh

Footballguy
Quick update - it's looking like he'll start chemo on Tuesday. The next 8-9 months of treatment will be intense for him (all of us). He'll be dealing with major fatigue, nausea, loss of appetite/weight lost, hair loss, etc. But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer. The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him. I would do anything to be able to fast forward a year in time. Thankfully we have tons of support from family and friends. We've got this! Thanks again for all of the great advice in this thread. I love this place.
Just some words of advice- one of the biggest ways that you and your wife will be able to help is with daily activities and infection control. If he’s like most 8yr olds, there will definitely be days where he doesn’t want to bathe (or be wiped down with CHG wipes), brush his teeth, or do his laps (getting up out of bed to walk to keep his lungs healthy).

One of the biggest dangers will be the risk of a central line infection that leads to a systemic infection (because his immune system will be wiped out). The more that you can do to help encourage excellent hygiene, the better.
Yeah our doctor went over this yesterday and basically said the exact same thing. This will be a challenge for us because his hygiene in general has always been poor. After he goes to the bathroom, we always have to remind him to wash his hands. My wife and I will just need to really stay on top of him now. We will pound in his head how important it is to take care of his body. Thanks for the advice.
If you think he would respond to it, ask your nursing staff about Beads of Courage. Basically, every time he has any kind of achievement or intervention, he would get a particular type of unique, handmade bead. If he gets a shot, that’s a bead. CT scan? That’s a bead. Takes his meds? That’s a bead. I’ve seen kids with bead strands that were like Mr T with gold chains. Some kids, male and female, just absolutely love collecting them, and it can be very helpful for a little extra motivation.

 

Leeroy Jenkins

Footballguy
I’m not sure why I’m posting this at 5:30 in the morning but I guess maybe it’s related to the fact that I haven’t slept in a while and not thinking clearly. Actually in reality it’s because this forum is an amazing support network and we have some damn knowledgeable posters.

My 8 year old son (Toren) woke up Monday morning with what appeared to be a neck strain and a bit of a fever. He plays a bunch of sports so I didn’t make a big deal about it. We medicated him and the next couple days he was sore but things seemed to be improving. Yesterday he complained that the neck pain was more intense and again his temp was high. I immediately called the after hour nurse and she said to take him to the ER right away. After running some bloodwork, the doctor diagnosed him with Acute Leukemia. Shocking and devastating and all I could think about is why I didn’t take him to the ER on Monday.

Anyways I’ve been in tears in and out most of the past 8 hours as I sit next to my little guy in the hospital wondering what happens next.

I did have a great talk with the Oncologist and the prognosis for what he has is actually pretty good (given that it’s cancer). I know this is the beginning of a very long journey for him but man is he a fighter.

Anyways not sure what I’m looking for. Maybe thoughts and prayers. Definitely advice/suggestions.

I am so sorry to hear this. And don't beat yourself up AT ALL. Kids have aches and fevers 24/7/365 -- you never know when it is something actionable.

I know a few people who have had kids go through this, and while it sucks terribly, all of them have pulled through and become regular pain in the *** teenagers with this stuff just a bad dream.
 

Dinsy Ejotuz

Footballguy
But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer.

Not trying to downplay what's in front of you or anything, I know it'll be tough to see your guy dealing with this, but big picture -- you got this!
 

fred_1_15301

Footballguy
Thanks all. Well today was a little depressing. We were hoping he would be discharged from the hospital today but his Phosphorus counts were really high and so they wanted to keep him in. He missed his first Halloween. I've noticed the past few days that he's really gotten quiet and anti-social (even with mom and dad). The hospital has a portable Xbox system in his room and he's been loving playing Madden non-stop. The last 2 days he's had zero interest in playing Madden or watching any TV. He's also the type of kid that won't talk about what is bothering him so he just keeps telling us that he's just tired. I think not being able to come home for Halloween and not seeing any friends is hitting him hard. He also still can't fully understand why he's in the hospital for so long when "he feels completely fine". But we are staying strong for him and just taking things one day at a time. He will most likely be home schooled for most of the year and his teacher has volunteered to instruct him. I feel kind of lost on how to console my 8 year old boy who has changed so much in a week.
 

Tecumseh

Footballguy
Thanks all. Well today was a little depressing. We were hoping he would be discharged from the hospital today but his Phosphorus counts were really high and so they wanted to keep him in. He missed his first Halloween. I've noticed the past few days that he's really gotten quiet and anti-social (even with mom and dad). The hospital has a portable Xbox system in his room and he's been loving playing Madden non-stop. The last 2 days he's had zero interest in playing Madden or watching any TV. He's also the type of kid that won't talk about what is bothering him so he just keeps telling us that he's just tired. I think not being able to come home for Halloween and not seeing any friends is hitting him hard. He also still can't fully understand why he's in the hospital for so long when "he feels completely fine". But we are staying strong for him and just taking things one day at a time. He will most likely be home schooled for most of the year and his teacher has volunteered to instruct him. I feel kind of lost on how to console my 8 year old boy who has changed so much in a week.
I would expect that CHOP has professionals whose job it is to help kids cope with their diagnosis and situation. At CHOA, they’re called Child Life Specialists. I assume CHOP has something similar, and they’re very good at helping kids work through what they’re feeling without it being obvious like a psych consult.
Idk what the facility itself is like, but if they have a garden, game room, activity area, etc, I would recommend working on just getting him out of the room whenever possible to help decrease the feelings of isolation and missing out.

ETA: CHOP does have Child Life Specialists. I’d recommend asking your nurse tonight to ask day shift to set up a visit.
 
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fred_1_15301

Footballguy
Thanks all. Well today was a little depressing. We were hoping he would be discharged from the hospital today but his Phosphorus counts were really high and so they wanted to keep him in. He missed his first Halloween. I've noticed the past few days that he's really gotten quiet and anti-social (even with mom and dad). The hospital has a portable Xbox system in his room and he's been loving playing Madden non-stop. The last 2 days he's had zero interest in playing Madden or watching any TV. He's also the type of kid that won't talk about what is bothering him so he just keeps telling us that he's just tired. I think not being able to come home for Halloween and not seeing any friends is hitting him hard. He also still can't fully understand why he's in the hospital for so long when "he feels completely fine". But we are staying strong for him and just taking things one day at a time. He will most likely be home schooled for most of the year and his teacher has volunteered to instruct him. I feel kind of lost on how to console my 8 year old boy who has changed so much in a week.
I would expect that CHOP has professionals whose job it is to help kids cope with their diagnosis and situation. At CHOA, they’re called Child Life Specialists. I assume CHOP has something similar, and they’re very good at helping kids work through what they’re feeling without it being obvious like a psych consult.
Idk what the facility itself is like, but if they have a garden, game room, activity area, etc, I would recommend working on just getting him out of the room whenever possible to help decrease the feelings of isolation and missing out.

ETA: CHOP does have Child Life Specialists. I’d recommend asking your nurse tonight to ask day shift to set up a visit tomorrow.
Yup he’s been meeting with them a lot and has a great connection with them. They’re amazing and have helped us all (including his younger sister) a lot. I guess what we can expect going forward is some good days and some really bad days.
 

Mrs. Rannous

Footballguy
Would it help if a bunch of internet strangers sent him Halloween things for his own special at-home celebration? T-shirts, spooky fun things, and that sort of thing. Might be a pick-me-up for him. or whatever theme he likes? Sports such as football since you mentioned Madden.
 

Tecumseh

Footballguy
Thanks all. Well today was a little depressing. We were hoping he would be discharged from the hospital today but his Phosphorus counts were really high and so they wanted to keep him in. He missed his first Halloween. I've noticed the past few days that he's really gotten quiet and anti-social (even with mom and dad). The hospital has a portable Xbox system in his room and he's been loving playing Madden non-stop. The last 2 days he's had zero interest in playing Madden or watching any TV. He's also the type of kid that won't talk about what is bothering him so he just keeps telling us that he's just tired. I think not being able to come home for Halloween and not seeing any friends is hitting him hard. He also still can't fully understand why he's in the hospital for so long when "he feels completely fine". But we are staying strong for him and just taking things one day at a time. He will most likely be home schooled for most of the year and his teacher has volunteered to instruct him. I feel kind of lost on how to console my 8 year old boy who has changed so much in a week.
I would expect that CHOP has professionals whose job it is to help kids cope with their diagnosis and situation. At CHOA, they’re called Child Life Specialists. I assume CHOP has something similar, and they’re very good at helping kids work through what they’re feeling without it being obvious like a psych consult.
Idk what the facility itself is like, but if they have a garden, game room, activity area, etc, I would recommend working on just getting him out of the room whenever possible to help decrease the feelings of isolation and missing out.

ETA: CHOP does have Child Life Specialists. I’d recommend asking your nurse tonight to ask day shift to set up a visit tomorrow.
Yup he’s been meeting with them a lot and has a great connection with them. They’re amazing and have helped us all (including his younger sister) a lot. I guess what we can expect going forward is some good days and some really bad days.
It’s going to be tough, especially with the holidays coming up. One word of caution: the team will do their absolute best to get kids to a spot where they can go home for the holidays, at least for a day or two. Realistically, it’s not always possible. Be careful how the staff, and your family, set expectations. No one wants to tell a kid that they’ll be in-patient for Christmas, but it’s better to be honest than to have to break his heart by yanking it back when he’s been told he’ll get to go home.

BTW- if at any point you want me to stfu, just say the word. Like I said earlier, I’m positive that you’re getting the best care available at CHOP, but if my experience can help in any way, I’m here or feel free to hit me up via pm.
 

fred_1_15301

Footballguy
Thanks all. Well today was a little depressing. We were hoping he would be discharged from the hospital today but his Phosphorus counts were really high and so they wanted to keep him in. He missed his first Halloween. I've noticed the past few days that he's really gotten quiet and anti-social (even with mom and dad). The hospital has a portable Xbox system in his room and he's been loving playing Madden non-stop. The last 2 days he's had zero interest in playing Madden or watching any TV. He's also the type of kid that won't talk about what is bothering him so he just keeps telling us that he's just tired. I think not being able to come home for Halloween and not seeing any friends is hitting him hard. He also still can't fully understand why he's in the hospital for so long when "he feels completely fine". But we are staying strong for him and just taking things one day at a time. He will most likely be home schooled for most of the year and his teacher has volunteered to instruct him. I feel kind of lost on how to console my 8 year old boy who has changed so much in a week.
I would expect that CHOP has professionals whose job it is to help kids cope with their diagnosis and situation. At CHOA, they’re called Child Life Specialists. I assume CHOP has something similar, and they’re very good at helping kids work through what they’re feeling without it being obvious like a psych consult.
Idk what the facility itself is like, but if they have a garden, game room, activity area, etc, I would recommend working on just getting him out of the room whenever possible to help decrease the feelings of isolation and missing out.

ETA: CHOP does have Child Life Specialists. I’d recommend asking your nurse tonight to ask day shift to set up a visit tomorrow.
Yup he’s been meeting with them a lot and has a great connection with them. They’re amazing and have helped us all (including his younger sister) a lot. I guess what we can expect going forward is some good days and some really bad days.
It’s going to be tough, especially with the holidays coming up. One word of caution: the team will do their absolute best to get kids to a spot where they can go home for the holidays, at least for a day or two. Realistically, it’s not always possible. Be careful how the staff, and your family, set expectations. No one wants to tell a kid that they’ll be in-patient for Christmas, but it’s better to be honest than to have to break his heart by yanking it back when he’s been told he’ll get to go home.

BTW- if at any point you want me to stfu, just say the word. Like I said earlier, I’m positive that you’re getting the best care available at CHOP, but if my experience can help in any way, I’m here or feel free to hit me up via pm.
This is great advice. Thank you!
 

fred_1_15301

Footballguy
Would it help if a bunch of internet strangers sent him Halloween things for his own special at-home celebration? T-shirts, spooky fun things, and that sort of thing. Might be a pick-me-up for him. or whatever theme he likes? Sports such as football since you mentioned Madden.

Thank you! It’s a great thought and in time might be something that helps him. For now, I just want to move past Halloween.
 

tri-man 47

Footballguy
Just seeing all this now. My prayers are with you, Toren, and your family network. I love the Beads of Courage that @Tecumseh mentioned as a way to provide little rewards. What are some of Toren's interests? I'm wondering if there are ways for this crazy community to engage with him, through you ...sports challenges, silly trivia, puzzles, whatever things that might help occupy his time. I can't imagine how difficult this must be for you, but as you've noted, this community can be really special. So lean on all the goofballs here and keep a strong front for Toren.
 

Joe Bryant

Guide
Staff member
Thanks all. Well today was a little depressing. We were hoping he would be discharged from the hospital today but his Phosphorus counts were really high and so they wanted to keep him in. He missed his first Halloween. I've noticed the past few days that he's really gotten quiet and anti-social (even with mom and dad). The hospital has a portable Xbox system in his room and he's been loving playing Madden non-stop. The last 2 days he's had zero interest in playing Madden or watching any TV. He's also the type of kid that won't talk about what is bothering him so he just keeps telling us that he's just tired. I think not being able to come home for Halloween and not seeing any friends is hitting him hard. He also still can't fully understand why he's in the hospital for so long when "he feels completely fine". But we are staying strong for him and just taking things one day at a time. He will most likely be home schooled for most of the year and his teacher has volunteered to instruct him. I feel kind of lost on how to console my 8 year old boy who has changed so much in a week.

🙏 Hang in there @fred_1_15301
 

fred_1_15301

Footballguy
Thanks everyone. Toren had his 3rd chemo infusion yesterday. In addition to chemo, he's on a few other regular meds (including high dose steroids). His personality and interests have changed quite dramatically since the start of the medications. He was always somewhat introverted but definitely funny/goofy at times. He's always been very into sports (playing and watching). He's never been much of a foodie but would never pass up a drumstick or ice cream cone.

He's at home now and likely will be for pretty much the remainder of 3rd grade at least. The doctors tell us that it's ok to send him to school on days when he feels well and up for it. But for now, it's too early to tell when that might happen. He is fortunate to be in such a great school district with such an amazing support network. His teacher has volunteered to home school teach him 1 hour a day. I believe this is the one thing he looks forward to the most every day. Outside of that, he does nothing but watch tv, play Xbox, sleep and eat. He's tired a lot (obviously expected). He eats a ton (which is not like him at all) and has some odd cravings/demands. He pretty much sets our menu for lunch/dinner every day now. He's no longer into sweets/desserts at all. He has no energy to leave the house (let alone play sports). He's gotten very quiet - will only really talk when we ask him a question. I think all of this is normal for what he's going through but still hard to digest.

With that said, he's been tough as nails the past 3 weeks. He's handling chemo (and the other meds) like a champ. He's no longer afraid of needles. He's still very sweet with all of us. He never complains about anything at all - just accepted his fate and ready to fight. I think all kids are just so resilient. The prognosis is still very good and there is a good chance that he still leads a normal, healthy life. I just keep reminding myself of that when I have my weak moments.
 

STEADYMOBBIN 22

Footballguy
Well, I just cried my balls off. :coffee:


Man, wishing your son the best but also a big hug to you and momma bear. I can’t even fathom what you’re going through right now. Don’t forget to take care of yourselves.

If your son (or you) want to lose in Madden, send me a PM and I or my daughters can play against him. Maybe we can cheer him up or at least keep him distracted for a bit.

That’s an open invitation to anyone reading this who’s struggling with anything.

- Mobbin Family
 

Shutout

Footballguy
Hey Fred, just seeing this.

When my wife was diagnosed when she was 10. T CELL ALL. The doctors told her parents to plan a funeral and obviously the outcome was positive so keep your head up and watch your son amaze you with his resiliency.

A few things you've mentioned I'd like to comment on if I may:

Re: his appetite- steroid meds? If so, there you go. If not, think about his dosage schedule. There are meds at work in his system 24/7 and they are playing on a lot of his appetite related tendencies. Some you may not consider. For example, my wife said her chemo/ rad treatment killed her taste buds and it made her crave spicy, flavorable foods. Things like that that your son may not be able to put together. Look for those things.

Re: the comment that nobody will know he had cancer by 4th grade. This is important. That's a very comforting statement and one that , physically, is likey to be true but I promise you, there are aspects of this process that will stay with him for his entire life. I know that sounds negative but I don't say it to be like that in any way. I say it to encourage you and your wife to closely watch (and talk to him) about these things. Don't let him carry this on himself by himself. There's a lot of stuff where people try to carry on like making life as normal as possible and pretend like the bad parts don't exist but he needs to know you guys will aknowledge every boogy man this diagnosis presents and kick it in the teeth. Give him strength and confidence with it every chance you get. You might miss a holiday event. You might have to cancel plans last minute, curb sports, etc,etc, but you don't dwell on those momentary things because you're working towards something a lot greater, big picture.

I wish you the very best and can't tell you enough to pay attention each and every day to try to see things through his perspective of how this impacts him emotionally every bit as physically.
 
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fred_1_15301

Footballguy
Hey Fred, just seeing this.

When my wife was diagnosed when she was 10. T CELL ALL. The doctors told her parents to plan a funeral and obviously the outcome was positive so keep your head up and watch your son amaze you with his resiliency.

A few things you've mentioned I'd like to comment on if I may:

Re: his appetite- steroid meds? If so, there you go. If not, think about his dosage schedule. There are meds at work in his system 24/7 and they are playing on a lot of his appetite related tendencies. Some you may not consider. For example, my wife said her chemo/ rad treatment killed her taste buds and it made her crave spicy, flavorable foods. Things like that that your son may not be able to put together. Look for those things.

Re: the comment that nobody will know he had cancer by 4th grade. This is important. That's a very comforting statement and one that , physically, is likey to be true but I promise you, there are aspects of this process that will stay with him for his entire life. I know that sounds negative but I don't say it to be like that in any way. I say it to encourage you and your wife to closely watch (and talk to him) about these things. Don't let him carry this on himself by himself. There's a lot of stuff where people try to carry on like making life as normal as possible and pretend like the bad parts don't exist but he needs to know you guys will aknowledge every boogy man this diagnosis presents and kick it in the teeth. Give him strength and confidence with it every chance you get. You might miss a holiday event. You might have to cancel plans last minute, curb sports, etc,etc, but you don't dwell on those momentary things because you're working towards something a lot greater, big picture.

I wish you the very best and can't tell you enough to pay attention each and every day to try to see things through his perspective of how this impacts him emotionally every bit as physically.

Thank you for this! Such a helpful post.
 

fred_1_15301

Footballguy
@fred_1_15301 Just thinking about Toren and your family. I hope Toren is doing well and gets to be at home today.

Thank you! He had his 1 month bone marrow biopsy this past Tuesday. The doctors will have a much better sense of his long term treatment plan. Unfortunately his diagnosis appears to be mixed phenotype leukemia (rather than ALL) which has a worse prognosis. But we'll know more by middle of next week. Still just taking it one day at a time.

Yesterday was a rough day for him. He was wiped out all day and his temperature spiked. He was very upset and cried a lot because he thought that he would need to go to the hospital for Thanksgiving. He was already in the hospital for Halloween and was so bummed about missing another major holiday. The doctor told us to wait until the morning and check his temp again. Fortunately he woke up this morning and his temperature was below the "low-grade fever" level. Thus, it looks like he'll get to stay home for Thanksgiving. Thanks to that, he's been in a good mood today.

On another note, he was finally comfortable with the school announcing his diagnosis to the 3rd grade students. Now that the parents/kids know what's going on, we have received an outpouring of support. The community has been absolutely amazing. He has around 50 cards from classmates to go through this weekend.
 

ProstheticRGK

Footballguy
@fred_1_15301 Just thinking about Toren and your family. I hope Toren is doing well and gets to be at home today.

Thank you! He had his 1 month bone marrow biopsy this past Tuesday. The doctors will have a much better sense of his long term treatment plan. Unfortunately his diagnosis appears to be mixed phenotype leukemia (rather than ALL) which has a worse prognosis. But we'll know more by middle of next week. Still just taking it one day at a time.

Yesterday was a rough day for him. He was wiped out all day and his temperature spiked. He was very upset and cried a lot because he thought that he would need to go to the hospital for Thanksgiving. He was already in the hospital for Halloween and was so bummed about missing another major holiday. The doctor told us to wait until the morning and check his temp again. Fortunately he woke up this morning and his temperature was below the "low-grade fever" level. Thus, it looks like he'll get to stay home for Thanksgiving. Thanks to that, he's been in a good mood today.

On another note, he was finally comfortable with the school announcing his diagnosis to the 3rd grade students. Now that the parents/kids know what's going on, we have received an outpouring of support. The community has been absolutely amazing. He has around 50 cards from classmates to go through this weekend.
It's amazing how something so seemingly small, can become such a huge deal. Not having to go to the hospital on a holiday is a huge deal. Enjoy your day home together, and celebrate the small wins!
 

fred_1_15301

Footballguy
We received some good news today. The Oncologist informed us that after the first month of treatment there is no more observable leukemia in the bone marrow. We are still waiting on the results for measurable residual disease but this was very good news. I know there will still be lots of highs and lows in this journey but we are going to celebrate this high.
 

fred_1_15301

Footballguy
Toren has been back to his old self this week. I think it's a combination of being off the steroids and also receiving the good news last week. Yesterday he laughed and played so much with his 6 year old sister. She was so happy to have her big brother back. They were always very close but have grown quite distant since his diagnosis (mostly due to him shutting her out). Yesterday (and today) they were back to normal. I haven't spoken much about her but she's been incredibly brave and strong throughout all of this. We've made her start to wear a mask again to protect her brother. She was a little upset at first because she thought the kids would "embarrass" her. Now she proudly wears it to school every day.

We met with the Oncologist today and she informed us that his measurable residual disease results were negative. This is amazing news as it means he officially does not have any cancer and is in remission (after only 1 month of treatment). We could not have asked for any better news at this point.

Now on to the bad news. He will be on chemo for the next 2 years and the next 6-8 months will be very intense. There is a possibility that the doctors will recommend that he needs to receive a bone marrow transplant (apparently this is standard of care for acute myeloid leukemia and he has the rare mixed phenotype which includes T cell and myeloid). Quite frankly I'm scared to death of this. I'm not even sure I'll agree to consent to it. I'm just praying that we do not have to go down that path. Anyways, the Oncology team is meeting tomorrow to discuss his path forward so we'll have their recommendation on Friday.

The other bad news is that he will not be able to play any contact sports (which I believe would include soccer, baseball, basketball, football, etc) until his port (the device in which he receives his infusions) is removed. This means he's not playing any sports for another 2 years. This really pisses me off. The kid was in Kindergarten and the pandemic hit. In first grade, sports were limited still because of the pandemic. He finally had one good year of rec sports in 2nd grade. In 3rd grade, his sports seasons were cut short because of the cancer. Now he likely won't be able to play any sports until 5th grade at the earliest. I feel incredibly guilty by this but I have recently been getting upset when I drive by a field and see other kids playing sports. A month ago my son was on the field with those kids.

Anyways, I'm trying to keep focusing on the positives. The news we received today was awesome. He's getting back to his old self again. We'll work through all the other stuff.
 

steelerfan1

Footballguy
Toren has been back to his old self this week. I think it's a combination of being off the steroids and also receiving the good news last week. Yesterday he laughed and played so much with his 6 year old sister. She was so happy to have her big brother back. They were always very close but have grown quite distant since his diagnosis (mostly due to him shutting her out). Yesterday (and today) they were back to normal. I haven't spoken much about her but she's been incredibly brave and strong throughout all of this. We've made her start to wear a mask again to protect her brother. She was a little upset at first because she thought the kids would "embarrass" her. Now she proudly wears it to school every day.

We met with the Oncologist today and she informed us that his measurable residual disease results were negative. This is amazing news as it means he officially does not have any cancer and is in remission (after only 1 month of treatment). We could not have asked for any better news at this point.

Now on to the bad news. He will be on chemo for the next 2 years and the next 6-8 months will be very intense. There is a possibility that the doctors will recommend that he needs to receive a bone marrow transplant (apparently this is standard of care for acute myeloid leukemia and he has the rare mixed phenotype which includes T cell and myeloid). Quite frankly I'm scared to death of this. I'm not even sure I'll agree to consent to it. I'm just praying that we do not have to go down that path. Anyways, the Oncology team is meeting tomorrow to discuss his path forward so we'll have their recommendation on Friday.

The other bad news is that he will not be able to play any contact sports (which I believe would include soccer, baseball, basketball, football, etc) until his port (the device in which he receives his infusions) is removed. This means he's not playing any sports for another 2 years. This really pisses me off. The kid was in Kindergarten and the pandemic hit. In first grade, sports were limited still because of the pandemic. He finally had one good year of rec sports in 2nd grade. In 3rd grade, his sports seasons were cut short because of the cancer. Now he likely won't be able to play any sports until 5th grade at the earliest. I feel incredibly guilty by this but I have recently been getting upset when I drive by a field and see other kids playing sports. A month ago my son was on the field with those kids.

Anyways, I'm trying to keep focusing on the positives. The news we received today was awesome. He's getting back to his old self again. We'll work through all the other stuff.
Just checking in Fred. How’s Toren doing?
 

fred_1_15301

Footballguy
Toren has been back to his old self this week. I think it's a combination of being off the steroids and also receiving the good news last week. Yesterday he laughed and played so much with his 6 year old sister. She was so happy to have her big brother back. They were always very close but have grown quite distant since his diagnosis (mostly due to him shutting her out). Yesterday (and today) they were back to normal. I haven't spoken much about her but she's been incredibly brave and strong throughout all of this. We've made her start to wear a mask again to protect her brother. She was a little upset at first because she thought the kids would "embarrass" her. Now she proudly wears it to school every day.

We met with the Oncologist today and she informed us that his measurable residual disease results were negative. This is amazing news as it means he officially does not have any cancer and is in remission (after only 1 month of treatment). We could not have asked for any better news at this point.

Now on to the bad news. He will be on chemo for the next 2 years and the next 6-8 months will be very intense. There is a possibility that the doctors will recommend that he needs to receive a bone marrow transplant (apparently this is standard of care for acute myeloid leukemia and he has the rare mixed phenotype which includes T cell and myeloid). Quite frankly I'm scared to death of this. I'm not even sure I'll agree to consent to it. I'm just praying that we do not have to go down that path. Anyways, the Oncology team is meeting tomorrow to discuss his path forward so we'll have their recommendation on Friday.

The other bad news is that he will not be able to play any contact sports (which I believe would include soccer, baseball, basketball, football, etc) until his port (the device in which he receives his infusions) is removed. This means he's not playing any sports for another 2 years. This really pisses me off. The kid was in Kindergarten and the pandemic hit. In first grade, sports were limited still because of the pandemic. He finally had one good year of rec sports in 2nd grade. In 3rd grade, his sports seasons were cut short because of the cancer. Now he likely won't be able to play any sports until 5th grade at the earliest. I feel incredibly guilty by this but I have recently been getting upset when I drive by a field and see other kids playing sports. A month ago my son was on the field with those kids.

Anyways, I'm trying to keep focusing on the positives. The news we received today was awesome. He's getting back to his old self again. We'll work through all the other stuff.
Just checking in Fred. How’s Toren doing?
Thanks for following up steel. I haven't provided an update in almost a month and a lot has changed since then (mostly good news). We learned several weeks ago that he would not require a bone marrow transplant (at least not at this time). This was a huge relief for all of us. Overall, I would say he's been doing very well for the past month. He's been getting back his old personality and energy level. Ups and downs but way more ups than downs. In a couple weeks he will start the 2nd month of the 2nd phase of treatment (the induction phase). This has been an extremely intense phase of chemo that has caused a lot of nausea and fatigue. However, he typically only experiences those symptoms the day of and the day after the treatment/procedures. The rest of the week he's pretty much back to normal. It's helped my wife and I sort of set out expectations each week.

The downside is that he's having a hard time coping with it. He now knows exactly what will happen on the day of the treatment and it scares him to death. He builds up so much anxiety prior to the treatment. Today he had a procedure and it was a struggle to get him to lay on the bed. This is the exact same procedure that he's had done every week for the past 5 weeks. He struggled more than ever today. We have about 6-7 more months of the regular, intense treatments. This is great news for us because he's responding so well and it truly does look like he will ultimately be cured. The bad news of course is that in his mind, 6-8 months is a hell of a long time to continue with these treatments. I can't say I blame him because I have no idea what he's experiencing.

On another note, he's now gone to school (only for a very short time) twice in the past 2 weeks. Both experiences were very uplifting. He surprised his classmates and they just exploded with shock and emotion. They gave him so many gifts both times. Even the principal immediately dropped what he was doing and brought Toren in to his office to give him presents. I think I may have said it before but kids at that age are so kind and caring. There is typically no bullying or teasing. I'm not sure if a teenager would get that type of reaction.

Anyways, we continue to trek along day by day. Our spirits raise higher and higher each day as we continue to learn how to cope.
 

ProstheticRGK

Footballguy

The downside is that he's having a hard time coping with it. He now knows exactly what will happen on the day of the treatment and it scares him to death. He builds up so much anxiety prior to the treatment. Today he had a procedure and it was a struggle to get him to lay on the bed. This is the exact same procedure that he's had done every week for the past 5 weeks. He struggled more than ever today. We have about 6-7 more months of the regular, intense treatments. This is great news for us because he's responding so well and it truly does look like he will ultimately be cured. The bad news of course is that in his mind, 6-8 months is a hell of a long time to continue with these treatments. I can't say I blame him because I have no idea what he's experiencing.
Sorry for the weird editing, I can't get rid of the nested quotes.

One thing that may be helpful dealing with Toren's anxiety, is giving him choices. Having blood drawn: "Which arm do you want, Toren?" Lumbar puncture: "do you want to lay down or sit like a shrimp on the side of the bed?" Treatment day?: "Do you want Xbox or iPad? what clothes do you want to wear? Do you want to pick dinner tonight?"

At his developmental age, any form of control is really important to him. Giving him choices and getting him involved in his own treatment makes things seem more manageable, if he feels like he has a say in how he is treated. Even small things can go a long way towards giving him a sense of comfort and security. I hope it helps, brother!
 

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