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!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.
Thanks - I came up with it. Not giving my wife credit for that one.Toren is a bad *** name, btw. Sounds like a Viking warrior.
Sounds like it's time for a small treat that he can tolerate and can look forward to. A LEGO set or somesuch?The little guy has been tough as nails this weekend but I can see it's starting to take an emotional toll on him.
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).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.
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.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).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.
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.
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.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.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).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.
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.
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.
But according to the Oncologist, by the time he enters 4th grade (September of 2023) nobody will even know he had cancer.
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.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.
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.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.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.
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.
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.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.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.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.
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.
This is great advice. Thank you!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.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.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.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.
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.
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.
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.
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.
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.
@fred_1_15301 Just thinking about Toren and your family. I hope Toren is doing well and gets to be at home today.
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 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.
Just checking in Fred. How’s Toren doing?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.
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.Just checking in Fred. How’s Toren doing?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.
Sorry for the weird editing, I can't get rid of the nested quotes.
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.