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Original poster

Toddler cancer diagnosis “every parent has something to worry about”

143 replies

Calmondeck · 29/01/2023 11:39

I’m currently in denial about a cancer diagnosis my 20-month-old received yesterday. He will undergo a general anaesthesia 7am Monday morning for a full examination of the extent of the tumour.

IRL, I have only told my best friend who responded with “well I’ve looked up the cancer and it seems there is a very high survival rate. So this will just be like all of the other things all of the parents we know are dealing we. We have (insert her baby’s name) respiratory issues, (friend’s baby) has hip dysplasia, (another friend’s baby) has food allergies. You’re not alone, we’re all coping with something”.

I won’t know until tomorrow how bad the cancer is, or what the treatment is going to look like… but her reaction made me wonder… does having a child with cancer really feel like that? Like just another childhood medical issue? At this stage I feel numb and like our universe is about to be flipped on its head.

Does anyone have experience with infant cancer?

OP posts:
Justmeandthedog1 · 29/01/2023 15:04

Insensitive friend.
Cancer is scary and your tiny child having such a serious illness is very scary. I hope I supported my friend when her dc was diagnosed, it was a long haul of hospital stays and treatments. He made a full recovery btw, now a young adult.
I can remember her learning all she could about dc condition and they had great support from Clic.
I hope all goes well for your little one.

Whatwhatwhatnow · 29/01/2023 15:11

I know two people who died from asthma and one who died from a food allergy so I suppose in those extremely severe cases it might be comparable to a cancer diagnosis. But I think your friend is very insensitive and no, cancer is not comparable to the worries of an average parent.

I am so sorry for your child and wish all the best for their recovery.

Mellymoon · 29/01/2023 15:21

I think your friend was trying to be positive and didn’t know what to say. I know it’s not a great thing to have said but from experience people never know what to say and things can get a bit lost in translation sometimes. If she’s otherwise lovely then give her the benefit of the doubt xx

Interested in this thread?

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Children's health General health
BubziOwl · 29/01/2023 15:29

Oh OP. I will be thinking of you and your little one and sending lots of love ❤️

Being generous, your friend could just be very bad at comforting people and was trying to make you feel better. Or maybe she's just a dick. Either way, is there anyone else you could chat to/rely on about this? As I'm not convinced she's equipped to help you and you don't need anyone making you feel worse rn

Newyearnewmeow · 29/01/2023 15:32

I’m so sorry your friend is an insensitive cow. Starting her sentence with ‘well’ is minimising the seriousness of your little ones diagnosis.
I would be massively reducing contact with her and if she queries why I would tell her how unsupported you felt with her unsympathetic words.
Do let us know how your little one gets on, sending positive and caring thoughts.

curlymom · 29/01/2023 15:57

Your friend is insensitive and you won’t gain much by spending time with her right now.
sorry about the diagnosis. I hope you get answers once they investigate more
take a notebook to write everything down. Hoping you get the best news x

Arniesleftleg · 29/01/2023 16:06

This reply has been withdrawn

This message has been withdrawn at the poster's request

Arniesleftleg · 29/01/2023 16:07

So sorry, this was meant for another post, I'll have it taken down. Im so sorry about your little one.

OnaBegonia · 29/01/2023 16:07

Your so called friend is very thoughtless. My DD underwent extensive treatment for hip dysplasia, yes it was hard and upsetting as a very young first time mum, but I reassured myself that thankfully my child was coming home unlike the poor souls with life limiting illnesses.
I wish you and your wee one very bit of luck for a positive outcome x

CamilleRose · 29/01/2023 16:10

Ho @Calmondeck our second child, a daughter, was diagnosed with cancer/blood disease at 8 months. She had chemo for well over a year and finally turned the corner. She recovered by around 2 - 2 and a half. She is now 19 and at uni here in the USA.

I totally understand your complete and devastating shock. In fact the oncology team at the children's hospital she was treated at sat my husband and I down a second time to explain the diagnosis and treatment because they said they found parents go into such deep shock they aren't able to process what they are told. They were fantastic with our family as much as our daughter.

Its absolutely true that medicine is making incredible strides with cancer and is making constant breakthroughs, and many cancers have a v good prognosis compared to only 20 yrs ago.

cowprintsocks · 29/01/2023 16:20

So sorry to hear this- I have been there, and it is completely devastating. People do not know what to say, and whether she is trying misguidedly to be supportive or something else, this is not the support you need at the moment.

At this point, focus in on the most important things and know that you will be in bits, and that’s ok.
practical tips…

  1. have a notebook and pen with you-so you can keep a list of questions you want to ask and can jot down answers. You will forget. Or have someone with you for support who can do this.
  2. find specialist help- Young Lives vs Cancer (used to be clic Sargent) operate in hospitals, and online-look on their website, fb page
  3. find specialist support-there was an active fb group for what my DD had. They were invaluable for all the questions I had, as well as giving reassurance around what was happening
  4. dr Google-stay off it! It’s very triggering-I looked hard for survivor stories and found little beyond fundraising in memoriam. Or academic papers-even if published relatively recently the data set was several years old. Treatment and prognosis had moved on in the time but I had no idea.
  5. when you’re ready-find help for yourself. It’s brutal-but the nhs will focus on medically treating your child. This is the right thing, but they will not be there to help you hold it together. Young Lives social workers (really family support workers) can help with this.

You and your toddler will be in my thoughts tomorrow-sending you strength for the times ahead.

GHS78 · 29/01/2023 16:23

My son is a year and a half into treatment for cancer (ALL) and he was also 20 months old when diagnosed. None of our children have had a serious illness before so I can’t really compare it to anything else, but I can say it’s been pretty awful. So I have huge sympathy for anyone who’s children are going through something similar, whether they have cancer or something else.

He also has a ‘good’ prognosis, although that still is only 90%, and the 10% keeps me up at night. To achieve that good prognosis he has and still is undergoing treatment that has a really big impact on his quality of life. Our life is completely different to how it was before diagnosis, we have spent over 80 days inpatient. He has had a lot of mobility problems. He has become very moody and has lots of pain. We have to be really careful around other people due to his immune system. We find it difficult to plan anything as we end up cancelling for one reason or another.

In terms of your friend it’s really difficult to know if she was trying to be helpful and just said it clumsily or if she was trying to minimise what you are going to go through. I would just say that for us having close friends and family has been incredibly helpful, so if you think she was well meaning I would try and keep the friendship as you might need help/someone to talk to at a later stage.

Duckduckgooseagain · 29/01/2023 16:25

For the first time ever I’m actually sat with my mouth open. I can’t actually believe someone would say that.

misssunshine4040 · 29/01/2023 16:31

Calmondeck · 29/01/2023 11:39

I’m currently in denial about a cancer diagnosis my 20-month-old received yesterday. He will undergo a general anaesthesia 7am Monday morning for a full examination of the extent of the tumour.

IRL, I have only told my best friend who responded with “well I’ve looked up the cancer and it seems there is a very high survival rate. So this will just be like all of the other things all of the parents we know are dealing we. We have (insert her baby’s name) respiratory issues, (friend’s baby) has hip dysplasia, (another friend’s baby) has food allergies. You’re not alone, we’re all coping with something”.

I won’t know until tomorrow how bad the cancer is, or what the treatment is going to look like… but her reaction made me wonder… does having a child with cancer really feel like that? Like just another childhood medical issue? At this stage I feel numb and like our universe is about to be flipped on its head.

Does anyone have experience with infant cancer?

I'm sorry to hear you are dealing with this.
It is absolutely not the same thing as your friend has compared it to and I'm aghast that your friend was so dismissive of what you are going through.

I hope your toddler recovers to full health Flowers

MikeWozniaksMohawk · 29/01/2023 16:31

i have two close friends who have children currently under treatment - one primary age with leukaemia and one similar age to your DC with a brain tumour. My only reaction both time has been to express how sorry I am, how I couldn’t imagine what they are going through and to let them know that I am here for anything they need. I have listened to their upset, their rants, their anger, their sadness, their frustration.

it isn’t like dealing with general childhood illnesses where you might have to go to a couple of appointments now and then. It will throw your world upside down for a while, OP. But you will get through this. You absolutely will. For now take it day by day, or even hour by hour if you need to. You don’t need to think about things next week or next month. Just concentrate on what your DC and family need right now.

sending lots of strength. If your best friend isn’t going to be the support you need then don’t let her suck energy from you without giving back. Distance yourself if you need to. Do what you need for you.

MikeWozniaksMohawk · 29/01/2023 16:33

cowprintsocks · 29/01/2023 16:20

So sorry to hear this- I have been there, and it is completely devastating. People do not know what to say, and whether she is trying misguidedly to be supportive or something else, this is not the support you need at the moment.

At this point, focus in on the most important things and know that you will be in bits, and that’s ok.
practical tips…

  1. have a notebook and pen with you-so you can keep a list of questions you want to ask and can jot down answers. You will forget. Or have someone with you for support who can do this.
  2. find specialist help- Young Lives vs Cancer (used to be clic Sargent) operate in hospitals, and online-look on their website, fb page
  3. find specialist support-there was an active fb group for what my DD had. They were invaluable for all the questions I had, as well as giving reassurance around what was happening
  4. dr Google-stay off it! It’s very triggering-I looked hard for survivor stories and found little beyond fundraising in memoriam. Or academic papers-even if published relatively recently the data set was several years old. Treatment and prognosis had moved on in the time but I had no idea.
  5. when you’re ready-find help for yourself. It’s brutal-but the nhs will focus on medically treating your child. This is the right thing, but they will not be there to help you hold it together. Young Lives social workers (really family support workers) can help with this.

You and your toddler will be in my thoughts tomorrow-sending you strength for the times ahead.

This is excellent advice. Especially the last point of not forgetting about taking care of yourself.

Anon778833 · 29/01/2023 16:33

I'm so very sorry - you must be devastated. Your friend sounds horrible and not like a friend at all.

WonderingWanda · 29/01/2023 16:59

Sorry to hear you are dealing with this. I agree with everyone who has said your friend is insensitive and possibly a bit of a dick. This is a huge deal for you and your baby and no parent who is 'going through' something like this can just brush it off. It's only after you come out the other side that you can be dismissive of it in that way. Of course lots of people deal with difficult things, doesn't mean she can't dish out some empathy and a but of tlc to help you through the shock. Sending lots of virtual hugs op, seating strong and tell someone else in real life to get a bit more support.

CamilleRose · 29/01/2023 17:02

@Calmondeck if you want to start a thread in the Cancer support topic those of us with experience of a child having cancer can come over to chat and support you.

❤️❤️❤️

kittensinthekitchen · 29/01/2023 17:29

I am sorry in advance if this seems insensitive at this time, and will have it removed if anyone thinks so.
I thought I'd use this captive audience to draw attention to the early symptoms of childhood cancer

Toddler cancer diagnosis “every parent has something to worry about”
kittensinthekitchen · 29/01/2023 17:32

(By the way, Ted in the photo above, is now a teenager and is over ten years cancer-free ❤️)

ToddlerMumma · 29/01/2023 17:37

I'm so sorry you are going through this. No, hearing your child has cancer is not like everyday health struggles
Our daughter was 3 when she was diagnosed with high risk neuroblastoma stage 4. It felt like the bottom of my world had fallen through. I had a huge black lump of fear in my tummy and felt totally overwhelmed and terrified.
You will get through this. It is hard but you can do it. 18 months on and my DD has been through chemo, Radiotherapy, major surgery, bone marrow transplant etc but is now in remission
Good luck x

speciall · 29/01/2023 17:41

I'm sorry that you have to go through thus with your child. I hope its treatable and I will include your child in my prayers.
Regarding your friend, there is saying that tough times test friendship. She failed it that test.

smileladiesplease · 30/01/2023 00:11

Thinking of you and your family tonight op. Xx

Momtotwokids · 30/01/2023 01:09

Your friend is not a friend but a moron. Praying it isn't bad and the doctors can help.