Coping with a Strong Willed 2-1/2 Year Old During Chemotherapy

Updated on November 24, 2009
A.N. asks from Derry, NH
16 answers

Okay here's my problem. My 2-1/2 year old daugher was diagnosed with Leukemia back in September. From the moment she was diagnosed we had to live in the hospital for the next 45 days for her first two phases of chemotherapy treatment. Prior to this she was a very happy, well adjusted little girl. She would take naps and go to bed at night with no issues, her only problem was sharing. Being an only child she didn't have much luck with sharing with her cousins. While we were in the hospital she basically got what she wanted, whenever she wanted and her medications made her moody and irritable (steroids & chemo) and those behaviors were accepted, even expected. My problem is now that we are home again after our hospital stay she has turned into a little Jekyll/Hyde person. She can be happy as a clam one minute and then lying on the flooring crying, screaming, kicking, etc. the next. I find myself at my wit's end and then feel guilty if I do raise my voice to her because it seems to be the only way to get through to her when she gets like this. She no longer goes to sleep on her own, I've taken to sleeping on the floor in her room (she got used to be me always being their for her 24/7 while in the hospital). I've tried to be firm and leave her alone, but I am worried she will hurt herself during one of her tantrums and because of her chemo treatments any injury, even a bruise, could be potentially dangerous for her. The other big issue I am having is that she needs to take medications while we are home between hospital visits and she absolutely REFUSES to take her medications. I have asked the psychologist that has been assigned to us, but she is a 25 year old grad student who has never actually had to deal with a child so I am hoping some real world moms might have some advice for me.

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So What Happened?

Thanks to everyone for all the great advise and well wishes. We wound up back in the hospital last night as her diaper rash got really nasty. Finally one of the doctors actually made the same suggestion of getting the steroid in pill form and crushing it up as the liquid form is very nasty tasting. Prior to her last phase of treatment my daughter was very good about taking oral meds, but the last round of chemo left her with terrible mouth sores, so bad that she couldn't eat or drink for days, she had to get IV nutrition because it was so bad. She took all her meds today in the hospital like a good girl and now if we can verify that the cause of her diarrhea and subsequent diaper rash isn't c-dif (sp?) then we might be able to head back home tonight or tomorrow. Of course we have to head back down on Tuesday for her next dose of chemo, but being home is so much better than being in the hospital, at least for me it is. Sadly when we got here last night and we stepped off the elevator on "our" floor she actually said "Hurray". How sad is that? I think she likes being here because there are no rules like at home where mommy tries to create some semblance of normalcy and routine (not that I have succeeded!). Her tantrums at home were not steroid related, as she hadn't started her latest round of steroids until Friday night and that is when the refusal to take her meds started. The child life specialist here is going to help me create a rewards chart for taking her meds and diaper changes, even though I think she is too young to fully understand it, she might surprise me and really like the concept. She's proven me wrong in the past so here's hoping! If I can get those two problems under control I will be a lot less stressed and she in turn will be less stressed. She told me today that she was happy that mommy was happy, broke my heart. Made me realize how in tune she is in to my moods and I need to get better at controlling them since my attempts at hiding them are unsuccessful.

So again thanks everyone and Heleigh from Williston (?) I was wondering if you would might giving me your email address as you have BTDT within very similar circumstances.

Thanks again,
A.

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K.G.

answers from Burlington on

leukemia and chemo aside, sounds like 2-3 year old behavior. Do rewards work for taking the medicine like a big girl? 123 Magic talks about positive changes/rewards. Yelling, cajoling will not help, but may help you restore some boundaries at home. She is struggling for some order (just like you are). The hospital is a horrible place to try to get through toddler times, and no sleep, and no routine, and certainly not the home life you want for her. Best of luck through treatment!

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D.F.

answers from Boston on

A.,

She sounds like a typical 2.5 year old to me, none of them like to share! LOL.

She is a sick little girl who wants mommy. You need to dig deep for some more patience and stop raising your voice at her. Her little world has turned upside down as yours has. If you need a brake...take it. Go out. Make sure you take care of yourself! What she needs at this time in her young life is maybe just you...if she is used to having you, Take her into your bed with you if your sleeping on the floor. I would probably wait on retraining her until she is done with her chemotherapy. I would also see if her meds come in flavors, if not you can buy flavors for meds at the pharmacy. Then I would hide in a juice or flavored water. Make yourself flavored water like hers and it will seem to her you both have the same drink. Make a game out of it. I probably would try to start a new day with new ideas to make her have a happy day with you and you with her. I cant stress enough that you do need time to yourself, even if its a walk or a run, take it.

You have a hard job taking care of a sick little one. Try not to stress out on the little things, you have a bigger worry with her being a sick little girl.

I wish you and your daughter the best of luck!
D.

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H.B.

answers from Burlington on

Hi,

Many hugs to you! I have BTDT (DD diagnosed at age 2 with ALL) and it won't be easy but you will get through this. It's hard to believe, but once she moves onto the "maintenance" part of treatment life will improve significantly--except for the awful steroids!

First, the medicine. I was lucky in that my DD was a dream about taking medication. That said, I always gave it to her in a syringe at night after she was asleep--so she would be half asleep when she got the meds. Mix it with water or juice--if it's 6MP it can't be mixed with citrus I think, but check this with your doctor.

Ask for the steroids in pill form and crush the pills and put into yogurt or pudding or juice. The liquid is god-awful. The pills she won't notice if they are crushed and mixed into food or juice.

The behavior--steroids are awful and there's not much you can do about how they affect her. She's going to be like that every time she has a week of steroids--and just as she's getting back to herself it will be time for another round of steroids! It's just a fact of life.

Don't expect her to be her normally well-behaved self. I would just give in. If she wants to eat pizza or cheese sticks for five days in a row, then let her. If she wants to lounge on the couch and watch TV all day then let her. She's going thru he!! and so are you, so the best thing is to make it easy for everyone all around and not fight it.

If she starts acting rude or inappropriate in public, then remove yourselves from the situation immediately and go home or go to the car until she calms down. If she's having a steroid tantrum there's nothing you can do to make her stop anyway b/c it's "irrational" behavior. When chemo and steroids are over then you can correct any mis-behaviors. You will find they probably disappear anyway.

Good luck to you and your family. My DD is going to be 6 in January. She finished her treatment 1 yr and 9 mos ago and is doing great.

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L.C.

answers from Boston on

Hi A.

My son was 3 1/2 when he was diagnosed and it is a fine line you need to walk. What we found is part of the behavior is that at this point they can control nothing in there lives so the meds become more of a control issue then anything else. The two things that worked for us was we found something to crush the pills in to mask the taste, we used orange Zyrex which is a flavored syrup, liquid concentrate used to make a Koolaide like drink or for snow cones and we used the oral syringe. Secondly we did the wait out, I would sit him away from everything no toys, tv and when on steriods no food until he took his meds first. Especially when he was on steriods the food factor really played in because he was always hungry. The sleeping part is a little harder to figure work out even after Taylor was off treatment we battled the not sleeping nights, what we eventually figured out was that in the hospital he got use to sleeping with a lot of noise, after 4 1/2 years of treatment for us he would freak out in a quiet house, so I bought a little fan that clips to his bed and he sleeps with it on year around. My prayers are with you and your family if you would like to talk feel free to contact me at ____@____.com. Taylor will be celebrating his 7th year anniversary from being diagnosed next month and has been off treatment for 2 1/2 years it is a long journey but you can and will get through it. The best advice I can give you is one that was given to me never say no to help, if you don't need it right when it is offered respond that you don't know what you need right now but can I call you later when I figure things out. The last thing is try to keep things as "normal" as possible, this is really hard in the beginning when your life seems to be run but meds and hospital stays but you need to remember this is a real long time for a child and this is the time she is going to remember so you need to make it as positive as possible. The best example I can give you if for us was schedule hospital stays, we planned them like mini vacations, we packed our bags, went out to dinner on our ride up to the hospital and "checked in". We always brought way to much stuff like special blankets and pictures to make the room more like home and Taylor always referred to his hospital stays as he was going to visit his "friends" at the hospital. Make friends with your nurses they're one of your best advocates for your child, take advantage of child life if it is available any distraction from you even if you sitting in the room gives you a little break from that "continuous entertainment time". Hope this helps, I feel like I've written a novel but these are some of the things that worked for us.

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K.S.

answers from Boston on

Hi A., not only do medications affect our moods and behavior, but so does the food we eat. After reading about attention issues and food, I started doing research online.
Here is a website I found helpful: www.feingold.org.
I have always had a hyper girl. I could never get her to do a time-out, because she couldn't sit still.
When she had cold medicine she became a bear. Turns out, she is reacting to the artificial dyes and flavors in kids meds.
For the past year I have changed my 3 children's diet to ALL NATURAL. My daughter is now 14. When she avoids those artificial ingredients - ESPECIALLY DYES, including in any personal products for her hands & body & hair, laundry & dish soaps - SHE IS NOT A MOODY, IRRATIONALLY OBSTINATE TEEN, but CALM and HAPPY AND CO-OPERATIVE!
Artificial dyes, flavors and preservatives have been banned in Europe for years. In the first 3 months of All-Natural, my 2 sons, who struggled with delayed reading abilities - had their grades go up across the board 5-10 points in every subject. Not a single grade stayed the same or went down. My 5th grader's reading level steadily climbed 3 grade levels over 5 months. All 3 of my kids were suffering from grief related stress and diagnosed with GAD - general anxiety disorder last Nov. over losing their grandmother in June. I started going all natural w/food shortly after-wards and the anxiety disappeared.
My daughter no longer needs hyperactivity meds - which, by the way, we could not get without dyes...
SEE if you can get non-dyed meds for your daughter as a start.
http://www.linkedin.com/in/KarenSmithD
http://www.facebook.com/KarenSmithD
http://www.twitter.com/KarenSmithD
Research for yourself. Another helpful website is www.therealfoodchannel.com I wish you peace & good health!

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M.M.

answers from Boston on

First, let me express my empathy for your stressful and potentially terrifying situation. I've had a lot of experience with cancer in my family over the years and understand the hardship it brings to all involved.

That said...The thing that stands out to me about this whole situation is the "expected" and "accepted" part of her behavior in the hospital.

I think it's a desperately thin line to walk when all you want to do is comfort your baby and give her every little thing she needs or wants because "isn't she suffering enough?" The problem with that kind of thinking is, it negates the fact that she is still barely a toddler and 'in training' to become a polite and responsible adult. Try not to lose sight of the long run in liu of the current situation.

I think you could probably be understanding AND compassionate in regards to the medication making her moody, while still (at least attempting to) teach her self-management skills? Maybe if you don't jump when she says jump EVERY time she desires something she'll remember that sometimes life makes you wait?

While it's true that being 2.5 years old and having cancer ISN'T the normal experience of life...the hope and prayer is that she WILL make it out into the normal world and our job as parents is to make sure she's properly prepared. Not a spoiled brat because she was unlucky enough to get sick.

As for the sleeping arrangements, I think that's pretty normal for any kid who's been sick (or on vacation) when the normal routine gets messed up. There's often a certain period of re-training and re-adjustment to be had. However you trained her to go to sleep on her own the first time, is exactly how to deal with it again...maybe with a little bit of an extra gentle hand since it's NOT her fault she got sick and it's true she DOES need a little compassion and understanding for the fear she now lives with (to whatever degree a 2.5 year old understands fear).

I don't know what to tell you about the medication, but that's my extremely humble two cents on the behaviors of sick kids. Stay strong, Mama!!! (and don't forget to take care of yourself too!!! You're no good to anybody if you don't take a moment to regroup yourself!!!)

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E.S.

answers from Boston on

A.,

My heart goes out to you during this difficult time. I want you to know that I am a 32 year-old mother of 2 healthy boys and an ALL survivor. Two is a tough age no matter how you slice it, but chemo on top of that must be agony. However, I think you've gotten some good advice so far. I would start by asking for a more experienced psychologist. If they tell you everyone else has a full case load, you let them know they need to come up with another solution then. You have to be the best advocate you can for your daughter because no one else is going to do it for you or her. That was the biggest lesson I took away from my experience. Also, Heleigh's advice about the meds was great. And remember, steroids are going to make her a demon sometimes--that's just what they do. Do what you can to get through this. Whatever she "learns" now can still be undone--she's only 2. Good luck with everything. Make sure you're taking care of yourself as well. Maybe you could seek out a support group. It's so helpful to hear how other parents are dealing with some of the same issues you are too. And if you're at the JFC, you are in great hands!

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M.B.

answers from Hartford on

First of all I'm so sorry to hear about your terrible adventure with Cancer. No child should have to go through that. Especially not one so young. But I have to say she sounds like a very typical 2 year old. My son just turned 2, but I do have two older daughter. There is a reason they are called the terrible 2's. You need to understand that they just don't have the vocabulary to express themselves. My 2 year old can be very loving one minute with hugs and kisses and then screaming and whacking you over the head with whatever is handy. You have to be firm at these times, but also very much encourage the good behavior. When my son hits we firmly tell him no hit and then show him nice touch. And we exagerate the nice tough too. Showing him how we touch nice. If she's throwing a temper tantrum walk away. Make sure of course it's safe and she can't pull anything down on herself or anything though. When the temper tantrum is done give her the words she's trying to find to express herself. Tell her I know you're upset because I wouldn't let you do whatever she wanted to do, but right now it's time to do this and we will do that later. Help her to have the words. Honestly, after what you all have been through this really should be a welcome behavior. If she's well enough to throw a temper tantrum then that's a good sign. Not sharing is very typical. If her health allows it then find a playgroup. If not then you can practice it at home with her yourself. Show her how to take turns. Tell her it's mommy's turn to do something. You have to try to make things as normal as possible. Even though she's sick now she does still need to learn these important life lessons. She still very much wants to please you too so you have to take advantage of this. She's also learning how far she can push you. So you will need to try to find a safe way to discipline her. If that means putting pillows around her during a temper tantrum, then do it. But you cannot give in to her. As far as the meds go are they by mouth? My son hates all meds. We have to hold him down to give them to him. It literally takes two of us to give him meds. But it's for his well being so you do what you have to do. Find out if the pharmacy can flavor them. Or see if you can put it in her cup or food to get her to take it. I hope she recovers and is in remission soon. Good luck. And if you are interested I can direct you to a fried of mine who's daughter also had cancer. She was 3 when she went through treatment. She's 5 now and doing great. But she might be able to give you more advice on how to continue the discipline in a safe way. So let me know if you'd be interested in her contact info. I know she'd love to talk to you and give you someone to bounce thoughts and concerns off of.

M.

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X.D.

answers from Boston on

Oh. poor you and poor baby! Two is the hardest age to do anything with and to have such upheaval. It's survival time for you right now (kind of like after the baby was born). Do anything you can to get through this and ask for help, too. Grandparents have an abundant supply of patience since the child goes home to Mom afterwards. My youngest had kidney surgery just before turning 2 and it was difficult afterwards because I spoiled her, others spoiled her and you know what - she deserved to be pampered! She took medicin for three years aftr surgery and wasn't always happy about it! Can you mix it into juice? Reflavor it? Can you offer a small treat afterwards (this always went over well - a few M+M's or a popsicle, etc....). I can't imagine how scared, tired and frustrated you are. Is it a child life specialist you are seeing at the hospital? They aren't psychologists (that I am aware of), but they do know how to diffuse a situation, divert attention and sometimes give an idea or two. Try not to talk infront of your child. She sounds quite bright and a little frustrated herself. She might enjoy the game of "Let's make Mommy Insane." Aren't we entertaining when we get all wound up? By the way, I've slept by the side of a bed/crib more times than I like to admit. Give yourself a break because no one can understand what you and your child need right now. There are some things we do in the short term to make things easier. God bless!

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K.D.

answers from Boston on

Hi A.
My heart goes out to you and your family!! You really have gotten a lot of good advise here! It is survial time for you guys. Do what you have to to get through it! And get as much help as you can.
My son has asthma and has been in the hospital several times and on meds. All of which he hates!! I use a med syringe and mix it with a little juice. Or if she drinks from a sippy put a little bit of juice in that and have her drink it. Also you could put juice (no medicie) in a med cup have her drink that then add a little medicine 1/2 medicine 1/2 juice do that untill all the meds are gone.
I hope that you can use any of these sugestions.
K.

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C.M.

answers from Boston on

A.
I am a mom and do oncology massage for children and adults.
What I have seen is explaining what is going on in 2 year old language because when she truely understands there are no problems with medicine or behavior because of the seriousness of the situation. Many people/parents are suprized at how easily the children understand.
The understanding that I have is that the behaviors are about her being scared. Also, because of the chemotherapy their bodies get stagnant with the toxins of what the chemo is doing which getting rid of the "bad" cells. The toxins made children/adults very grumpy. Make sure she is drinking lots of water,dark green vegetables help the liver detox or the green drink from Odwalla or Naked and fresh lemon is very helpful
Good Luck

C.

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K.S.

answers from Boston on

I am a 33 year old, counseling grad student and I have two boys 11 and 8. My 11 year old has always given me issues at bedtime. Recently I sought help to deal with his bedtime issues, since they have escalated due to the divorce between his father and me. It is hard to be objective when dealing with your own children, and when I am frustrated it blurs my decision making, so we saw a Lic. Social Worker. She suggested a reward based program, after one night of staying alone in the bed, with no getting out of bed and no "I need a drink" "I need to go to the bathroom" disturbances, they get a reward (we photo copy the calendar month to track progress)...then its after 3 nights, then 5. And then every 5 nights for a few months. If they mess up after night 2, it goes back to one night, and builds up again, but no prize is given for the one night, they have to be consecutive nights, or it goes back to the last milestone that you left off on. The reward can be a friend over, or a family movie night, going out for ice cream, it doesn't have to be fancy. She said the best rewards are ones that reward the child with time with you, because that is where the attachement is right now. The first night, you can give 3 strikes, of you little one calling for you, then two the following night, then one for the rest of the first week, especially since she is younger (my 11 year old got strikes too). It is working for us, he hasnt busted into my room in the middle of the night in about a month, and he goes to bed much easier. It isn't perfect but it is getting there.

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K.A.

answers from Boston on

My prayers are with you and your family for a strong, happy, healthy recovery!!!
Blessings to you! Stay strong!!

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C.M.

answers from Boston on

I don't have a lot of advice to offer, except to suggest that you ask for a new psychologist or have your current one paired with a more experienced supervisor.

I wish you and your daughter well during this difficult and stressful time and hope she recovers soon!

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G.L.

answers from Boston on

hi A.,
well, first of all, every parent raises their voice at some time, and you are under a tremendous amount of stress, so please don't beat yourself up when it happens. You can apologize to her and explain why you got upset,and then let it go. I had a severe chronic illness growing up, and then worked as a clinical social worker with kids and families dealing with illness. I am so sorry you are facing this right now. There is nothing more frightening than having your child be sick, and your worlds have been turned upside down. And a 2 1/2 yr old's world is pretty small: they feel anychange deeply. So to feel sick, and be in a strange place where the rules are different.... Going back to "normal" is impossible. My best advice would be to ask your medical team to get you in touch with other families coping with or who have already dealt with childhood leukemia. They will be your best support. That aside, your daughter is going through typical defiant, loud, tantrum-y, willful toddler behavior. In that sense, she should not have special treatment because she is sick. Of course she wants the hospital rules and routines at home, because who wouldn't? You will have to find someplace safe for her timeouts: apack n play with padding? She is scared and angry and doesn't have the words or ability to process or explain how she is feeling. So she is controlling what she can control. She may be young, but kids manipulate at a vey young age. You could try telling her, in very simple words "we are home now, and these are our rules at home." although you feel guilty and sad, part of your role will be to not treat her differently because she is sick. You can understand and empathise, and know that she feels rotten and scared and angry and sick. The situation stinks! And you wish it wasn't how it is. But it is.
Give yourself a break whenever you can, and when you feel yourself at the breaking point, try to steo away for a minute. If you have a pack andplay or crib or gates area where you know she is safe, walk away and catch your breath.
asfor the medications, as her doctors what they recommend. It's not a choice: she has to take them. I loved that mom's idea of you drinking something together: making it a game. Is there some other tiny reward you could give her that she cares about? Like a sticker collage: she gets a sticker for each med, and after a short while, you can see how many she collects and can feel proud of that.
Hang in there, A.. As scared and overwhelmed as you feel, remember that you need to maintain as much normalcy as you can: whatever that means for yiur family.
all my best,
G.

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L.O.

answers from Boston on

Hi A.,
It sounds like you are doing a great job - truly. A 2 year old is tough WITHOUT an illness. I can't even begin to give you advice, but, I did have one trick that worked when my kids were that age. We had to take some nasty medicines, and a spoonful of sugar wasn't going to help. So basically, I made a reward chart. Usually it covered the whole time they were going to have to take the medicine - but if that's more than 3 or 4 weeks, I might break it down into multiple awards. Anyway - we picked something REALLY big in their mind - not something wimpy. My kids were only motivated by something truly great. Maybe a giant Barbie toy or something. If it cost $30 but it got them to take the medicine, I figured $1 per day to get it done was cheap. (And quite frankly, after suffering all that time with the medicine, they weren't really being spoiled - they did deserve it.) Then I drew or pasted a picture of that thing on the chart - along with a picture of the medicine - and they clearly got the message that to get the reward they were going to have to do the medicine. This worked with my kids' particular psyche - perhaps it will work with your daughter. Best wishes.

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