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Original poster

Please hold my hand - cancer.

986 replies

Trazzletoes · 02/10/2012 10:31

Currently in hospital since last night with DS who is 3. Scans show masses on his brain. Drs believe them to be tumours, likely to have come from his abdomen.

Waiting for more scans/tests etc. staff are being overly nice to us which is worrying me more (though they did refer us to social services last night as they thought DH or I had fractured DS' skull.

Feel incredibly sick. He is 3 years old. Please hold my hand.

OP posts:
kohl · 08/10/2012 15:16

So lovely to hear you are enjoying him at home. Stick a big spodge on your light map from Cambridge. Thinking of you often.x

Jamillalliamilli · 08/10/2012 15:36

Trazzle very pleased to hear you have great r/l support and very glad to hear D/d well enough to be around D/s, and that your all home for now and a chance to grab some peace and normality.
I know it?s all such a whirlwind and awful shock, but full of admiration for how you've handled everything and you will grow to cope with all this throws at you. Continued good wishes from here.

madwomanintheattic · 08/10/2012 16:00

Oh Trazzle, enjoy these quiet in-between times and conserve your energy for the rough bits. It sounds as though dd is going to be a big help! How lovely to have them both at home and almost normality for a bit x

whatinthewhatnow · 08/10/2012 16:23

oh trazzle, what a terrible, difficult situation. It's lovely to see that you are all being supported and looked after. I hope your gorgeous DS is having a lovely day at home with you. He must be surrounded by so much love.

There's a little light on here in west herts for you.

dikkertjedap · 08/10/2012 16:54

Hope you have all had a lovely day today.

In addition to what KinkyandGhoulishDorito already recommended, once your DS becomes an inpatient, I found it helps to make sure you take stuff for yourself to do as well (book, craft stuff, knitting if you like it, something to pass the time when waiting and DS might be resting/sleeping) and I also found a good toilet bag with face cream, hand cream, paracetamol, shower gel, towels etc etc, air is terribly dry in hospitals).
It may also be an idea to get friends/family send cards to his ward.
Good luck.

RachelHRD · 08/10/2012 21:30

So glad you are having some time at home together and DS is doing well xxx

OscarPistoriusGirlfriend · 08/10/2012 22:08

So glad he's home Trazzle, enjoy this time.

Still thinking if you and sending healing vibes.

OzBrit · 08/10/2012 22:34

Trazzle - I have only just found your posts and I am sorry to hear the neuroblastoma news. Enjoy the time with DS at home before the chemo starts. You sound very strong and have an amazing amount of support from family and on here too!

When my friend was going through the same thing (daughter was also 3 at diagnosis - stage 4 neuroblastoma, chemo, stem cell transplant plus a new trial treatment - she is about to turn 6 and has been all clear for 1 yr now) she used a website called "Caring Bridge" which was great to write an update and then this shared it with friends/family etc (basically a blog). I think she found it therapeutic to write and it also meant she could update everyone regularly without having to phone/text and it put her in some control.

I wish you all the best on this long journey and send many hugs your way x

123caughtaflea · 08/10/2012 22:45

I hope you have had a good day and very glad to hear your DD is not at risk. Wishing you well.

New candle burning tonight (group = TT if anyone else is interested.)

www.gratefulness.org/candles/candles

123caughtaflea · 08/10/2012 22:50

Just realised the link I've been using doesn't work. Helpful.

Try this:

www.gratefulness.org/candles

WhoKnowsWhereTheTimeGoes · 08/10/2012 22:59

Just popping in to say night night.

fanoftheinvisibleman · 08/10/2012 23:21

That's fantastic news. Hope you can enjoy a few days at home before you're back next.

Original poster
Trazzletoes · 08/10/2012 23:23

Oz it's great to hear positive stories, thank you. I'm purposefully avoiding survival rates, but we are under no illusions about how hard it is to beat this. Everywhere we look there are stories about failed treatments etc and it's easy to forget that there ARE survivors. DS has been so unlucky to get this, but he could also be so lucky to come through the other side. Someone has to!!!

We've had a nice quiet day, tho poor DS is very itchy... both DCs have been keeping us entertained. DD is back in childcare tomorrow so we can focus on DS a bit more.

He is fine in himself, just tiring very easily and resisting all attempts to wash his hands or administer medicine. Typical 3 year old!!!

DM has arrived safely and unpacked. She's here for the long haul!!! And we have finally told the last of our close friends. Glad to have that job over and done with.

Thanks for the blog idea, I am actually sending round robin updates out by email to keep people updated.

I am no stronger than any other parent on that ward, or on the children with cancer thread etc. None of us have fallen apart spectacularly because none of us can afford to. You would be just as strong given the same circumstances. You have no choice.

OP posts:
Original poster
Trazzletoes · 08/10/2012 23:24

dikkert I may finally learn to crochet! Grin

OP posts:
ToffeeWhirl · 08/10/2012 23:37

Trazzle - I'm just popping in before bed to see how your day went. I'm glad it has been nice and quiet for you. It's good that you can spend some special time with DS tomorrow, whilst DD is in childcare. I'm so glad your mum has arrived to help out and that you have told the news to the last of your close friends.

123 - that's a lovely website. I have lit a candle for MiniTrazzle.

Good night, Trazzle. I hope you all have a good, restful sleep tonight.

KinkyandGhoulishDorito · 09/10/2012 06:40

DD gets very itchy. She has to take piriton - ask the Dr about it. It is really common.

I learned to crochet too. Grin Cat in the teenage ward has a right stack of craft supplies...

KinkyandGhoulishDorito · 09/10/2012 06:41

You would be just as strong given the same circumstances. You have no choice. Spot on.

minmooch · 09/10/2012 07:24

We used to have a telephone tree for sending updates - I would ring one person, tell them the news and then they would ring the next person etc.

If your son goes in to isolation then people will need to send cards enclosed in it's own envelope and another. The envelope that has been through Royal Mail and touched by all can be opened and left outside of isolation ward.

The thing I craved when in hospital was home cooked food and vegetables. The only cooking equipment available to parents was a microwave and a toaster and a kettle. Some friends used to send me single portions of home cooked food, in microwavable dish that I could re- heat. I bought a small vegetable steamer and used to freeze single portions so some greenery was available. Even now we are home one of my best friend brings round homemade meals that I can freeze and use when I am just too knackered to cook.

My son was itchy too. The chemo and hospital air dries their skin out - be careful to only use non perfumed creams on them. My sons feet were the worst and I used to peel them for him (weirdly satisfying!)

Everyone says I too am so strong - but agreed - we have no choice. I make sure I wash my hair every day and put my make up on - not for me but for my sons so that I 'look' normal to them.

Be prepared for conflicting emotions. I used to want friends to visit then as soon as they were there I wanted them to go! My good friends understood this and would still drive long distances just to give me a hug and then leave (precious, precious friends).

Sending you love and strength.

Original poster
Trazzletoes · 09/10/2012 07:35

min same cooking facilities but we arent allowed to re-heat home-cooked meals in the microwave due to risk of food poisoning.

There is going to be a LOT of cold pasta eaten!

Will try and dig out some oilatum or e45 for his skin.

OP posts:
BoffinMum · 09/10/2012 08:36

My son was on the paediatric chemo ward in Addenbrookes for a completely different reason, but we had a microwave there and were allowed to reheat whatever we liked. If they fuss about food poisoning, buy a temperature probe and apply formal food hygiene procedures to any preparation. Really, the hospital is being very over fussy, I think.

THERhubarb · 09/10/2012 09:31

Camomile if they allow you to use it, is very soothing for the skin.

I can understand them not allowing reheated food. Even if the risks are minimal. Can you imagine if someone reheated rice and then got very ill as a consequence? (rice being one of those foods that you have to be extra careful with due to very nasty bugs) In this culture of insurance claims, the NHS have to take precautions.

Could you buy organic ready-meals? Just have a few of them on stand-by for those days when you can't be bothered to cook a thing. And if you do have to eat cold food, adding a little chilli sauce gives it a bit of a kick and makes it taste better. Or how about thermal containers and bags to keep the food in?

Whatevertheweather · 09/10/2012 10:10

Trazzle I've only just seen your thread and I couldn't not post and offer another hand and splodge of light from Hampshire.

Evil bastard cancer; I'm so sorry your poor boy and all your family are going through this. You all sound amazing xx

dikkertjedap · 09/10/2012 10:15

Is there a M&S food or big supermarket which sells ready meals really close the hospital, so you can ask visitors to get you some food from there or pop in there yourself? (it does get boring supermarket/M&S food and can't beat home cooked food but still often better than the hospital food)

Nice that you can have a quiet day with DS at home today.

When in hospital I knitted a soft toy for my DD, it has become her favourite toys of all as she saw every step of the process. She now loves to knit herself.

There is a website called HOPE which consists of stories of children who beat cancer. I will try to find the link.

Hope you all have a lovely day.

dikkertjedap · 09/10/2012 10:26

Couldn't find the HOPE website (it is an American website, maybe somebody else knows it), however, this UK website has also a page with patient stories of children who beat cancer.

gordonpym · 09/10/2012 13:22

Trazzle, I've been following this conversation since its beginning and thinking a lot about you and your family. My best friend's DD was diagnosed with Leukemia 7 years ago, when she was 3. She had not one, but two chromosomes anomalies, so they said her chances were very very low, less than 5%. More than once, doctors told my friend "she will die tonight" and then every time she was there in the morning. One young doctor even said to my friend " I don't understand, she should be dead" can you believe that.
Today she is a beautiful, gorgeous girl, with long, thick and silky hair, very much alive - even too much alive some days!! So this is just to say numbers, statistics, rates are just that: numbers for the lambda patient, not for your son. You start at 100%. It will be very hard, fine, but you are a tough woman, and when you don't feel so tough, just pop here to reload your batteries.
I used to write her 3 or 4 letters /week, sending stories made with stickers or pictures about my every day life and talking about the future, holidays and what would happen "next", after the illness. I even sent her 2 pounds of sand, because she was missing the sea and the beach. And her mother put it in a jar, next to her bed.
A big hug