What to expect when your kid's expecting chemo?
August 24, 2015 6:54 PM Subscribe
This is us. We've since spoken to a lot of other doctors, and agreement seems to be unanimous that chemotherapy is necessary. Our son is scheduled to begin this week. We are having trouble preparing him for it because all the materials available seem to be centered around fighting cancer - which he doesn't have. Help?
The recommended treatment is 12 weeks of Vinblastine (via IV through a port in his chest) followed by 9 months of Mercaptopurine (oral). We have been told that as far as chemo goes, this is very low-agressive and well-tolerated, but (obviously) they can't tell us which side effects our son is likely to have, only the long list of possibilities.
We have tried to find children's books or even adult books that talk about what the experience of chemo is like, but all of the ones we've seen are geared toward cancer patients. Our son doesn't have cancer and we don't want to scare him more than is necessary.
If you or (especially) a child you know has had any experience with this regimen, can you describe what it was like for you/them, or what we can expect? What we should know, bring, do to make it easier for him? Or if there is a good kids' book you have seen that just talks about chemo without talking about cancer, that would also be appreciated.
Thanks!
The recommended treatment is 12 weeks of Vinblastine (via IV through a port in his chest) followed by 9 months of Mercaptopurine (oral). We have been told that as far as chemo goes, this is very low-agressive and well-tolerated, but (obviously) they can't tell us which side effects our son is likely to have, only the long list of possibilities.
We have tried to find children's books or even adult books that talk about what the experience of chemo is like, but all of the ones we've seen are geared toward cancer patients. Our son doesn't have cancer and we don't want to scare him more than is necessary.
If you or (especially) a child you know has had any experience with this regimen, can you describe what it was like for you/them, or what we can expect? What we should know, bring, do to make it easier for him? Or if there is a good kids' book you have seen that just talks about chemo without talking about cancer, that would also be appreciated.
Thanks!
Best answer: If your child's treatment is being arranged through a major children's hospital, ask to be put in contact with their child life team. Child life basically specializes in helping patients and families (including siblings) prepare for and cope during any and all medical treatment- from IV placement to port placement, from blood transfusion to bone marrow transplant, and pretty much everything in between. They can often tailor-make materials/books for kids going through particular therapies. They're terrific --here's an example department
posted by BundleOfHers at 7:14 PM on August 24, 2015 [11 favorites]
posted by BundleOfHers at 7:14 PM on August 24, 2015 [11 favorites]
Best answer: My family's experience with an adult at an infusion center was this, just in case a description of an infusion center is helpful:
You walk in, there's a waiting room like a normal doctor's office. They take you into the back which is a room with comfortable recliner-ish chairs all around the outside of it. (There's medical stuff crammed in various places too.)
The person getting the infusion sits in one of the chairs, and the family member/s sit next to them. The nurses hook up the infusion, and you all sit there for however long the infusion takes, which might be a couple hours or longer. Then you go home, and come back the next day (or whatever your treatment plan says). There are sometimes other little tests or blood draws or adjustments etc. In our case, you didn't see the actual doctor on most of the visits.
Other patients might be there at the same time getting their infusion, so there's some chitchat among the people in the room. There might be a tv, or little amenities like coffee and magazines. Some people bring their tablets etc and watch a movie, some people bring crosswords, some nap, etc. If your treatment calls for you to be there every day for a week, or that kind of thing, you'll get to know the other people who are there at the same time and have little friendly exchanges with them. Some will look sick/weak and some will look fine.
As anywhere, the nurses vary but often have a good sense of humor; you'll be seeing the same people over and over so make a point of learning their names, both to be friendly and so you can keep track of who's noticeably good or bad at certain procedures.
Getting a port was good, in the case of my family member -- it saved a lot of pain and hassle from individual needle sticks and IV placements. The prospect seems maybe a bit scary and the port takes careful handling, but definitely good.
posted by LobsterMitten at 7:33 PM on August 24, 2015 [1 favorite]
You walk in, there's a waiting room like a normal doctor's office. They take you into the back which is a room with comfortable recliner-ish chairs all around the outside of it. (There's medical stuff crammed in various places too.)
The person getting the infusion sits in one of the chairs, and the family member/s sit next to them. The nurses hook up the infusion, and you all sit there for however long the infusion takes, which might be a couple hours or longer. Then you go home, and come back the next day (or whatever your treatment plan says). There are sometimes other little tests or blood draws or adjustments etc. In our case, you didn't see the actual doctor on most of the visits.
Other patients might be there at the same time getting their infusion, so there's some chitchat among the people in the room. There might be a tv, or little amenities like coffee and magazines. Some people bring their tablets etc and watch a movie, some people bring crosswords, some nap, etc. If your treatment calls for you to be there every day for a week, or that kind of thing, you'll get to know the other people who are there at the same time and have little friendly exchanges with them. Some will look sick/weak and some will look fine.
As anywhere, the nurses vary but often have a good sense of humor; you'll be seeing the same people over and over so make a point of learning their names, both to be friendly and so you can keep track of who's noticeably good or bad at certain procedures.
Getting a port was good, in the case of my family member -- it saved a lot of pain and hassle from individual needle sticks and IV placements. The prospect seems maybe a bit scary and the port takes careful handling, but definitely good.
posted by LobsterMitten at 7:33 PM on August 24, 2015 [1 favorite]
Best answer: Hi! Just over 20 years ago, when I was 8, I had vincristine (an analogue of vinblastine) as part of a chemotherapy protocol. Even that long ago I remember it being very easy to tolerate! We considered it the "vacation" part of the regimen. I did have some side effects but I'm not going to mention them here because it wasn't exactly the same medication/dosage and my experience will not be the same as your son's (that's true of any anecdotes about side effects, remember.)
The understanding that I needed, and that I fondly remember my parents providing, was that the medicine was going to make me better and that I was still the same person. It's hard to remember as an adult, but "normal" for a kid is extremely flexible. He's 6--even without the medical stuff, his life and surroundings would be rapidly changing right now. He's gonna make friends, learn new things, and--even though I know you are scared and it seems impossible right now--have fun in chemo! Those things are going to absorb way more of his attention than the mechanics of chemo, I promise. Definitely reach out to Child Life and see how they can help you help him navigate them.
posted by kelseyq at 7:54 PM on August 24, 2015 [10 favorites]
The understanding that I needed, and that I fondly remember my parents providing, was that the medicine was going to make me better and that I was still the same person. It's hard to remember as an adult, but "normal" for a kid is extremely flexible. He's 6--even without the medical stuff, his life and surroundings would be rapidly changing right now. He's gonna make friends, learn new things, and--even though I know you are scared and it seems impossible right now--have fun in chemo! Those things are going to absorb way more of his attention than the mechanics of chemo, I promise. Definitely reach out to Child Life and see how they can help you help him navigate them.
posted by kelseyq at 7:54 PM on August 24, 2015 [10 favorites]
BTW one of the places critical in providing a sense of normalcy and community when I was sick and after, for me and for my parents, was a cancer camp. I know we had campers who were in chemo for non-cancer conditions--might be worth looking into if there's one local to you.
posted by kelseyq at 7:58 PM on August 24, 2015
posted by kelseyq at 7:58 PM on August 24, 2015
Best answer: Unless he is a highly unusual 6 year old, the least you talk about it, the better. Tell him that he is having a new medicine put in on such and such day and he gets a new toy as a treat, because the medicine is kind of yucky. And then let him spend all of his time obsessing over which toy to get. Basically, distract, distract, distract! It isn't until about 8 or 9 that they can comprehend things well enough for the information that you want to share. Gloss over without lying.
If you have already discussed this with him, and he is beginning to be anxious, you may want to go ahead and start him with a therapist to work through his feelings. It is a difficult thing that your family is going through and the support of an uninvolved professional who could just be there for him would benefit him.
If he is a young 6, find a transfer object. One stuffed animal that is only used for the chemo. He can hold it for every treatment and every time that he gets sick from the treatment. And then, when the treatment is over, you can have some sort of ceremony where you mail the toy to another sick child because he doesn't need it anymore.
posted by myselfasme at 6:18 AM on August 25, 2015 [1 favorite]
If you have already discussed this with him, and he is beginning to be anxious, you may want to go ahead and start him with a therapist to work through his feelings. It is a difficult thing that your family is going through and the support of an uninvolved professional who could just be there for him would benefit him.
If he is a young 6, find a transfer object. One stuffed animal that is only used for the chemo. He can hold it for every treatment and every time that he gets sick from the treatment. And then, when the treatment is over, you can have some sort of ceremony where you mail the toy to another sick child because he doesn't need it anymore.
posted by myselfasme at 6:18 AM on August 25, 2015 [1 favorite]
Best answer: As far as the regimen, how much mercaptopurine? I did a few months on prednisone last year and then switched to 125 mg daily of mercaptopurine (close to a year on it now). If I never see a steroid again it will be too soon, but the mercaptopurine's only side effect is making me not have symptoms of an auto immune disorder. Not sure if this will be at all relevant to his treatment, but if you have any questions feel free to memail!
I hope the time flies by for your family and that you see a happy outcome on the other side.
posted by skrozidile at 7:34 PM on August 25, 2015
I hope the time flies by for your family and that you see a happy outcome on the other side.
posted by skrozidile at 7:34 PM on August 25, 2015
Best answer: I've had chemo both with and without a port. Ports rule. You go through less sticks because they can do the pre-chemo blood draws through the port with the same rig they use for the infusion, so you don't go around afterwards with giant bruises all over your arms and hands. You won't risk burns under the skin from the chemo drugs because ports don't leak in the same way a regular IV can. Good choice.
As part of the chemo infusion, he'll probably get "pre-meds" - the anti-nausea drugs & other ancillary meds. My pre-meds included Benadryl, which is a Special Treat to receive through a port. If he's getting Benadryl, ask the nurse to explain to him what it will feel like. Or I could just tell you: you are EFFED UP as soon as they push it. If he is going to get that, ask his nurse to push it slow so he doesn't freak out, because it can be a little disconcerting how quickly you feel it.
His appetite may be all over the place - not eating, eating a lot, craving certain foods, unable to deal with his usual favorites - whatever it is, just go with it. I once - then vegan - ate ONLY macaroni & cheese for several days during chemo because it was the only thing my brain & belly could get together on. The last time I could not get enough freezing cold Coke, which I normally don't ever drink. Fluids are really important - get him an awesome insulated cup and have him sip all the time.
I wish your little guy didn't have to go through this, but here's to an easy treatment & speedy recovery for him. Feel free to memail me for follow up or questions.
posted by deliciae at 1:13 AM on September 1, 2015 [1 favorite]
As part of the chemo infusion, he'll probably get "pre-meds" - the anti-nausea drugs & other ancillary meds. My pre-meds included Benadryl, which is a Special Treat to receive through a port. If he's getting Benadryl, ask the nurse to explain to him what it will feel like. Or I could just tell you: you are EFFED UP as soon as they push it. If he is going to get that, ask his nurse to push it slow so he doesn't freak out, because it can be a little disconcerting how quickly you feel it.
His appetite may be all over the place - not eating, eating a lot, craving certain foods, unable to deal with his usual favorites - whatever it is, just go with it. I once - then vegan - ate ONLY macaroni & cheese for several days during chemo because it was the only thing my brain & belly could get together on. The last time I could not get enough freezing cold Coke, which I normally don't ever drink. Fluids are really important - get him an awesome insulated cup and have him sip all the time.
I wish your little guy didn't have to go through this, but here's to an easy treatment & speedy recovery for him. Feel free to memail me for follow up or questions.
posted by deliciae at 1:13 AM on September 1, 2015 [1 favorite]
Best answer: To follow up, upon re-reading my comment, I just wanted to reiterate what kelseyq said above: my experience is not what your son's experience will be. Apologies if I inadvertently added any anxiety to the mix.
posted by deliciae at 1:33 AM on September 1, 2015
posted by deliciae at 1:33 AM on September 1, 2015
Response by poster: Just wanted to give an update. My son just completed 12 weeks of chemo treatment with Vinblastine and had his IV port removed yesterday. Every one of his scans came out completely clean, so the doctors are (cautiously) recommending that we stop here and don't continue the rest of the regimen (yay!). No idea whether we're out of the woods yet - there's no blood test, so we'll just have to keep going in for scans and keep our fingers crossed, but it's been over 5 months since the last time lesions appeared so everyone is hopeful.
There was some hair loss and many of his favorite foods don't taste good to him anymore (I would love to know how long before that reverses, if anyone has been through it). It also completely shot his immune system for the last two weeks, keeping him out of school and away from people in general - we had to give him shots which got him back into the normal range, but it took a while to work. Otherwise it was smooth sailing, and the staff of the pediatric ward at Sloan Kettering was so incredible that he was actually sad that treatment was over and he couldn't keep coming back every week.
Thanks to all of you for your answers and support.
posted by my left sock at 4:07 PM on November 18, 2015 [4 favorites]
There was some hair loss and many of his favorite foods don't taste good to him anymore (I would love to know how long before that reverses, if anyone has been through it). It also completely shot his immune system for the last two weeks, keeping him out of school and away from people in general - we had to give him shots which got him back into the normal range, but it took a while to work. Otherwise it was smooth sailing, and the staff of the pediatric ward at Sloan Kettering was so incredible that he was actually sad that treatment was over and he couldn't keep coming back every week.
Thanks to all of you for your answers and support.
posted by my left sock at 4:07 PM on November 18, 2015 [4 favorites]
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So if it was me, I might go to the infusion center tomorrow (without your son), tell the receptionist that your son will be starting treatment there soon, and ask something like, "I wonder if you have a nurse care manager, or an experienced nurse who would be free to talk to me for a few minutes. I know we have our formal intake coming up, but I was hoping to just get to ask a few questions before hand"
This might not pan out as helpful, but you might get a really experienced charge nurse or some really thoughtful other nurse to sit down and talk to you about what's typical. If you really like this person's energy, then you could just ask, "hey, would you be willing to talk to our son too, when we come in on Thursday?" or whatever.
Some of the questions you might want to ask could be:
"What is hardest for kids about having a port?"
"What side effects have you heard kids complain about most often with Vinblastine?"
"What do kids bring with them for comfort?"
"Can you tell me a success story you saw here recently?"
"Our kid doesn't have cancer. We're worried that we won't fit in here. What other conditions do you treat with chemo here?"
posted by latkes at 7:04 PM on August 24, 2015