Son Diagnosed with Acute Leukemia (1 Viewer)

[Tecumseh]

Great news about avoiding BMT. It’s a rough process, even when it goes well.

 

[Alex P Keaton]

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.

So glad to see this update fred. Toren is teaching so many kids how to show up for a friend. A lot to be proud of. Been thinking about you this holiday season. Be well.

 

[steelerfan1]

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.

Great news fred! Really sad to hear about his anxiety levels the day of. Have you talked to the treatment staff? Is this a normal occurrence? They have any suggestions? Thank you for sharing the update. Continued thoughts and prayers Toren’s and your families way.

 

[fred_1_15301]

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!

Yeah we (including the nurses/doctors) give him choices but generally on clinic day, he's pretty depressed and doesn't really make any decisions. He does play a big part in helping us plan our meals these days. It's funny - the first month and a half he was on high dose steroids and literally the only thing on his mind was food. Now that he's starting to vomit a lot, he doesn't really care much about food. We are more concerned with getting him fluids to keep him hydrated but he's not even holding liquids down that well. I also noticed that when he's feeling crummy like he has all week, there isn't much that he wants to do (not even go on YouTube or play Xbox). He basically just sulks and sleeps all day.

Now the one thing that always cheers him up (no matter how nauseated he is) is having his friends/family visit. We've tried to incorporate that as much as possible. Also trying to balance it with keeping him safe since his ANC counts are extremely low at the moment.

 

[fred_1_15301]

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.

Great news fred! Really sad to hear about his anxiety levels the day of. Have you talked to the treatment staff? Is this a normal occurrence? They have any suggestions? Thank you for sharing the update. Continued thoughts and prayers Toren’s and your families way.

Unfortunately it is normal. No kid likes to be jabbed and given extremely strong medicines that they know will make them feel sick. Kids that age likely just aren't able to see the light at the end of the tunnel. Toren still doesn't completely comprehend why he's even going through all of this given that the cancer is apparently gone. I explain it to him over and over but it's not helping. We're just prepared to have a very rough 6-8 months ahead knowing that there is a light at the end at the tunnel. I don't know what the longer term psychological consequences will be but I'm trying not to think about that too much right now. Just want him to get better.

 

[Tecumseh]

It’s completely normal. I’m guessing the procedure you mentioned above was a port access. I’m sure they already are, but you can make sure they’re using numbing cream or freeze spray to help with those. As far as his anxiety, someone mentioned letting him have as much control, and make as many choices as possible. It can help, to an extent, but of course every kid is different.

One thing you may want to ask about is Ativan, which would help with both his anxiety and the nausea. It can be more effective than zofran, phenergan, kytril, etc

I wouldn’t worry about long term psych effects. Kids are amazingly resilient, and I think you’re approaching it correctly as a bridge to cross down the road.

 

[steelerfan1]

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.

Great news fred! Really sad to hear about his anxiety levels the day of. Have you talked to the treatment staff? Is this a normal occurrence? They have any suggestions? Thank you for sharing the update. Continued thoughts and prayers Toren’s and your families way.

Unfortunately it is normal. No kid likes to be jabbed and given extremely strong medicines that they know will make them feel sick. Kids that age likely just aren't able to see the light at the end of the tunnel. Toren still doesn't completely comprehend why he's even going through all of this given that the cancer is apparently gone. I explain it to him over and over but it's not helping. We're just prepared to have a very rough 6-8 months ahead knowing that there is a light at the end at the tunnel. I don't know what the longer term psychological consequences will be but I'm trying not to think about that too much right now. Just want him to get better.

nothing else I can say fred other than your family will continue to be in my thoughts and prayers.

 

[fred_1_15301]

It’s completely normal. I’m guessing the procedure you mentioned above was a port access. I’m sure they already are, but you can make sure they’re using numbing cream or freeze spray to help with those. As far as his anxiety, someone mentioned letting him have as much control, and make as many choices as possible. It can help, to an extent, but of course every kid is different.

One thing you may want to ask about is Ativan, which would help with both his anxiety and the nausea. It can be more effective than zofran, phenergan, kytril, etc

I wouldn’t worry about long term psych effects. Kids are amazingly resilient, and I think you’re approaching it correctly as a bridge to cross down the road.

He's actually ok with the port access because he puts the numbing cream on so it doesn't hurt much. He's more scared of receiving anesthesia because either the chemo or anasthesia meds make him sick. He has been taking zofran for nausea and just recently added on Ativan as well. He's not really even that scared of throwing up because he feels a lot better after it happens. The part that he hates is that the more he throws up, the more likely we need to take him back to the clinic to get him hydrated. He just doesn't like going into the clinic because it disrupts his day.

 

[parasaurolophus]

I have so much respect for any parent that goes through this and doesn't just turn into a pile of rage. So sorry for your son and you. Wishing you the best.

 

[Tecumseh]

It’s completely normal. I’m guessing the procedure you mentioned above was a port access. I’m sure they already are, but you can make sure they’re using numbing cream or freeze spray to help with those. As far as his anxiety, someone mentioned letting him have as much control, and make as many choices as possible. It can help, to an extent, but of course every kid is different.

One thing you may want to ask about is Ativan, which would help with both his anxiety and the nausea. It can be more effective than zofran, phenergan, kytril, etc

I wouldn’t worry about long term psych effects. Kids are amazingly resilient, and I think you’re approaching it correctly as a bridge to cross down the road.

He's actually ok with the port access because he puts the numbing cream on so it doesn't hurt much. He's more scared of receiving anesthesia because either the chemo or anasthesia meds make him sick. He has been taking zofran for nausea and just recently added on Ativan as well. He's not really even that scared of throwing up because he feels a lot better after it happens. The part that he hates is that the more he throws up, the more likely we need to take him back to the clinic to get him hydrated. He just doesn't like going into the clinic because it disrupts his day.

Ah, I didn’t realize he was getting intrathecal chemo. Hopefully the Ativan works better as an antiemetic. Zofran and Ativan can be stacked, and you could also ask about adding Benadryl to the mix. The Ativan/Benadryl combo might knock him out more than he likes, but it can help with the vomiting.

 

[fred_1_15301]

It’s completely normal. I’m guessing the procedure you mentioned above was a port access. I’m sure they already are, but you can make sure they’re using numbing cream or freeze spray to help with those. As far as his anxiety, someone mentioned letting him have as much control, and make as many choices as possible. It can help, to an extent, but of course every kid is different.

One thing you may want to ask about is Ativan, which would help with both his anxiety and the nausea. It can be more effective than zofran, phenergan, kytril, etc

I wouldn’t worry about long term psych effects. Kids are amazingly resilient, and I think you’re approaching it correctly as a bridge to cross down the road.

He's actually ok with the port access because he puts the numbing cream on so it doesn't hurt much. He's more scared of receiving anesthesia because either the chemo or anasthesia meds make him sick. He has been taking zofran for nausea and just recently added on Ativan as well. He's not really even that scared of throwing up because he feels a lot better after it happens. The part that he hates is that the more he throws up, the more likely we need to take him back to the clinic to get him hydrated. He just doesn't like going into the clinic because it disrupts his day.

Ah, I didn’t realize he was getting intrathecal chemo. Hopefully the Ativan works better as an antiemetic. Zofran and Ativan can be stacked, and you could also ask about adding Benadryl to the mix. The Ativan/Benadryl combo might knock him out more than he likes, but it can help with the vomiting.

He’s already refusing to take Benadryl because he knows it will put him to sleep. I’m hoping the combo of Zofran/Ativan works. I don’t know why he’s still throwing up when his procedure was on Tuesday. Fortunately he’s been able to hold some food/liquids down today but also threw up in the morning. This is the first week we’ve had to deal with the vomiting which is bizarre since he’s been on the same regimen for the past 5 weeks. I feel so bad for the kid.

 

[fred_1_15301]

I have so much respect for any parent that goes through this and doesn't just turn into a pile of rage. So sorry for your son and you. Wishing you the best.

Thanks. Trust me - when everyone is asleep at night, I have my moments of rage/depression. I just have no other choice than to be as strong as possible in front of him and his little sister. We will all become a lot stronger once this is all over.

 

[Tecumseh]

It’s completely normal. I’m guessing the procedure you mentioned above was a port access. I’m sure they already are, but you can make sure they’re using numbing cream or freeze spray to help with those. As far as his anxiety, someone mentioned letting him have as much control, and make as many choices as possible. It can help, to an extent, but of course every kid is different.

One thing you may want to ask about is Ativan, which would help with both his anxiety and the nausea. It can be more effective than zofran, phenergan, kytril, etc

I wouldn’t worry about long term psych effects. Kids are amazingly resilient, and I think you’re approaching it correctly as a bridge to cross down the road.

He's actually ok with the port access because he puts the numbing cream on so it doesn't hurt much. He's more scared of receiving anesthesia because either the chemo or anasthesia meds make him sick. He has been taking zofran for nausea and just recently added on Ativan as well. He's not really even that scared of throwing up because he feels a lot better after it happens. The part that he hates is that the more he throws up, the more likely we need to take him back to the clinic to get him hydrated. He just doesn't like going into the clinic because it disrupts his day.

Ah, I didn’t realize he was getting intrathecal chemo. Hopefully the Ativan works better as an antiemetic. Zofran and Ativan can be stacked, and you could also ask about adding Benadryl to the mix. The Ativan/Benadryl combo might knock him out more than he likes, but it can help with the vomiting.

He’s already refusing to take Benadryl because he knows it will put him to sleep. I’m hoping the combo of Zofran/Ativan works. I don’t know why he’s still throwing up when his procedure was on Tuesday. Fortunately he’s been able to hold some food/liquids down today but also threw up in the morning. This is the first week we’ve had to deal with the vomiting which is bizarre since he’s been on the same regimen for the past 5 weeks. I feel so bad for the kid.

That sounds like it may not be a reaction to chemo. If this is the first time, it may be viral, particularly since his counts are probably low.

 

[fred_1_15301]

It’s completely normal. I’m guessing the procedure you mentioned above was a port access. I’m sure they already are, but you can make sure they’re using numbing cream or freeze spray to help with those. As far as his anxiety, someone mentioned letting him have as much control, and make as many choices as possible. It can help, to an extent, but of course every kid is different.

One thing you may want to ask about is Ativan, which would help with both his anxiety and the nausea. It can be more effective than zofran, phenergan, kytril, etc

I wouldn’t worry about long term psych effects. Kids are amazingly resilient, and I think you’re approaching it correctly as a bridge to cross down the road.

He's actually ok with the port access because he puts the numbing cream on so it doesn't hurt much. He's more scared of receiving anesthesia because either the chemo or anasthesia meds make him sick. He has been taking zofran for nausea and just recently added on Ativan as well. He's not really even that scared of throwing up because he feels a lot better after it happens. The part that he hates is that the more he throws up, the more likely we need to take him back to the clinic to get him hydrated. He just doesn't like going into the clinic because it disrupts his day.

Ah, I didn’t realize he was getting intrathecal chemo. Hopefully the Ativan works better as an antiemetic. Zofran and Ativan can be stacked, and you could also ask about adding Benadryl to the mix. The Ativan/Benadryl combo might knock him out more than he likes, but it can help with the vomiting.

He’s already refusing to take Benadryl because he knows it will put him to sleep. I’m hoping the combo of Zofran/Ativan works. I don’t know why he’s still throwing up when his procedure was on Tuesday. Fortunately he’s been able to hold some food/liquids down today but also threw up in the morning. This is the first week we’ve had to deal with the vomiting which is bizarre since he’s been on the same regimen for the past 5 weeks. I feel so bad for the kid.

That sounds like it may not be a reaction to chemo. If this is the first time, it may be viral, particularly since his counts are probably low.

Yup that’s exactly what the nurse practitioner said on Thursday. She thinks it’s viral.

 

[Mrs. Rannous]

Hope the little guy feels better soon.

 

[fred_1_15301]

Toren had a couple weeks break from the treatments and it was really good for him (all of us). He did a lot over the past 2 weeks including going to school 4 straight days, seeing Avatar twice and going to a birthday party. Things started to feel somewhat "normal" again.

Yesterday he started his 3rd phase of treatment called interim maintenance. This is supposedly less intense than the previous 2 phases that he has completed. Reviewing his roadmap, he still has 2 more years of chemo. A good chunk of that time will be in the maintenance phase which is far less intense than what he is going through right now. But it's still 2 years. He'll be in 5th grade when this is finally over. And at that point, I have no idea what life will be like for him. He's changed so much in these 4 months. One positive is that he is still so young and resilient that I think he can eventually fully recover from this. He doesn't deal with the same pressures that a teenager would have to. The kids in his school all absolutely adore him and genuinely love when he's in school. However, I do wonder if he'll ever have the energy to play competitive sports again. Will he be able to do taekwondo again? Will he deal with long term psychological/depression issues? He's been a trooper but what he's dealing with would be very difficult even for an adult.

 

[Beef Ravioli Part 2]

Toren had a couple weeks break from the treatments and it was really good for him (all of us). He did a lot over the past 2 weeks including going to school 4 straight days, seeing Avatar twice and going to a birthday party. Things started to feel somewhat "normal" again.

Yesterday he started his 3rd phase of treatment called interim maintenance. This is supposedly less intense than the previous 2 phases that he has completed. Reviewing his roadmap, he still has 2 more years of chemo. A good chunk of that time will be in the maintenance phase which is far less intense than what he is going through right now. But it's still 2 years. He'll be in 5th grade when this is finally over. And at that point, I have no idea what life will be like for him. He's changed so much in these 4 months. One positive is that he is still so young and resilient that I think he can eventually fully recover from this. He doesn't deal with the same pressures that a teenager would have to. The kids in his school all absolutely adore him and genuinely love when he's in school. However, I do wonder if he'll ever have the energy to play competitive sports again. Will he be able to do taekwondo again? Will he deal with long term psychological/depression issues? He's been a trooper but what he's dealing with would be very difficult even for an adult.

Thanks for the update. I’m going to spend a portion my morning prayer to specifically lift up Toren and your family. He sounds like a great kid that is fighting a great fight!

 

[SWC]

fred all the best to you and your son and family and i know that whatever the future holds for your son you will be there and taking care of him and that is truly awesome keep on keepin on and definitely have you all in my thoughts

 

[fred_1_15301]

Toren has been in the interim maintenance phase of treatment for the past month and I have to say that it hasn’t been that bad (my wife shall never hear those words out of my mouth). He’s been going to school regularly other than the planned hospital visits every other week. His personality has taken a turn from the previous months. He’s pretty much always in a good mood and always acting goofy and immature. It’s nice to see but he occasionally takes it too far and we have to tell him to tone it down a little. Still way better than his previous personality.

A couple weeks ago his school threw an assembly for the first time to celebrate the amount of donations they received for the lymphoma and leukemia society. Toren was the honored hero and basically the event was all about him. I can’t even describe all the things that the school did for him but it was probably the most emotional day of my life. It makes me feel good about humanity.

In a month Toren will enter a very intense period of treatment but by mid June he should be starting maintenance for good. Another potential good piece of news is that it’s looking like I may be getting a new job offer. The company would allow me to work fully remote and I could start in the summer (which would allow me to be a full time caregiver while Toren is in the intense phase). Also it would be a nice promotion . This would be nothing short of a miracle if I get it.

 

[bigbottom]

Toren has been in the interim maintenance phase of treatment for the past month and I have to say that it hasn’t been that bad (my wife shall never hear those words out of my mouth). He’s been going to school regularly other than the planned hospital visits every other week. His personality has taken a turn from the previous months. He’s pretty much always in a good mood and always acting goofy and immature. It’s nice to see but he occasionally takes it too far and we have to tell him to tone it down a little. Still way better than his previous personality.

A couple weeks ago his school threw an assembly for the first time to celebrate the amount of donations they received for the lymphoma and leukemia society. Toren was the honored hero and basically the event was all about him. I can’t even describe all the things that the school did for him but it was probably the most emotional day of my life. It makes me feel good about humanity.

In a month Toren will enter a very intense period of treatment but by mid June he should be starting maintenance for good. Another potential good piece of news is that it’s looking like I may be getting a new job offer. The company would allow me to work fully remote and I could start in the summer (which would allow me to be a full time caregiver while Toren is in the intense phase). Also it would be a nice promotion . This would be nothing short of a miracle if I get it.

LOVE THIS UPDATE.

 

[Alex P Keaton]

Toren has been in the interim maintenance phase of treatment for the past month and I have to say that it hasn’t been that bad (my wife shall never hear those words out of my mouth). He’s been going to school regularly other than the planned hospital visits every other week. His personality has taken a turn from the previous months. He’s pretty much always in a good mood and always acting goofy and immature. It’s nice to see but he occasionally takes it too far and we have to tell him to tone it down a little. Still way better than his previous personality.

A couple weeks ago his school threw an assembly for the first time to celebrate the amount of donations they received for the lymphoma and leukemia society. Toren was the honored hero and basically the event was all about him. I can’t even describe all the things that the school did for him but it was probably the most emotional day of my life. It makes me feel good about humanity.

In a month Toren will enter a very intense period of treatment but by mid June he should be starting maintenance for good. Another potential good piece of news is that it’s looking like I may be getting a new job offer. The company would allow me to work fully remote and I could start in the summer (which would allow me to be a full time caregiver while Toren is in the intense phase). Also it would be a nice promotion . This would be nothing short of a miracle if I get it.

Fred: very glad to read this update. I’m not in the FFA as much anymore but this is one thread that is worth coming back for. Awesome that Toren gets to be a goofy kid. And the assembly sounds amazing. Good luck with the job, and the next phase of treatment for Toren.

 

[The Z Machine]

Go get em, Toren.

 

[fred_1_15301]

I haven't posted an update in a while. I ended up getting the job and have been off from work for the past 2 and a half weeks mostly spending nice quality time with Toren. I start my new job on June 19th which will be around the time that he completes the intense Delayed Intensification phase of treatment. After this phase is complete, he moves on to Maintenance for the next year and a half. Once he enters maintenance, he should start to slowly regain his energy/strength back.

The poor kid has gotten pretty frail - legs look like twigs. He now weighs less than his sister (who is 2 years younger). He sometimes just randomly falls down. He doesn't complain and gets right back up but it's still hard to see. With that said, his spirits are high and he's doing amazing during this intense phase. He's been mostly in a good mood and actually going to school pretty regularly. He still has a lot of food cravings and needs and I'm taking care of that (now that I'm the stay at home dad). He has some very close friends who have been great and playing with him almost daily.

I still don't know what the longterm implications will be but for now I'm optimistic because I see a faint light at the end of the tunnel.

 

[STEADYMOBBIN 22]

Great update Fred. Prayers and well wishes for Toren and yourself.

 

[bigbottom]

I haven't posted an update in a while. I ended up getting the job and have been off from work for the past 2 and a half weeks mostly spending nice quality time with Toren. I start my new job on June 19th which will be around the time that he completes the intense Delayed Intensification phase of treatment. After this phase is complete, he moves on to Maintenance for the next year and a half. Once he enters maintenance, he should start to slowly regain his energy/strength back.

The poor kid has gotten pretty frail - legs look like twigs. He now weighs less than his sister (who is 2 years younger). He sometimes just randomly falls down. He doesn't complain and gets right back up but it's still hard to see. With that said, his spirits are high and he's doing amazing during this intense phase. He's been mostly in a good mood and actually going to school pretty regularly. He still has a lot of food cravings and needs and I'm taking care of that (now that I'm the stay at home dad). He has some very close friends who have been great and playing with him almost daily.

I still don't know what the longterm implications will be but for now I'm optimistic because I see a faint light at the end of the tunnel.

Thank you for the update and the generally positive news. And I’m glad to hear you are getting to spend quality time with Toren and are staying optimistic. My unsolicited advice is not to bother thinking about long term implications.

 

[Joe Bryant]

I haven't posted an update in a while. I ended up getting the job and have been off from work for the past 2 and a half weeks mostly spending nice quality time with Toren. I start my new job on June 19th which will be around the time that he completes the intense Delayed Intensification phase of treatment. After this phase is complete, he moves on to Maintenance for the next year and a half. Once he enters maintenance, he should start to slowly regain his energy/strength back.

The poor kid has gotten pretty frail - legs look like twigs. He now weighs less than his sister (who is 2 years younger). He sometimes just randomly falls down. He doesn't complain and gets right back up but it's still hard to see. With that said, his spirits are high and he's doing amazing during this intense phase. He's been mostly in a good mood and actually going to school pretty regularly. He still has a lot of food cravings and needs and I'm taking care of that (now that I'm the stay at home dad). He has some very close friends who have been great and playing with him almost daily.

I still don't know what the longterm implications will be but for now I'm optimistic because I see a faint light at the end of the tunnel.

Thank you Fred. Rock on and know we're pulling for y'all.