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Children's health

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Original poster

Children with Cancer

833 replies

Twunk · 03/09/2013 18:04

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

OP posts:
magimedi · 21/02/2014 22:27

Min, I hope you & Will are asleep & I just want you to know that many people you've never met are holding you in their thoughts.

May you be granted whatever you need for this terrible time.

Original poster
Twunk · 21/02/2014 22:53

Good night Min and Will. I hope you have a restful night xx

OP posts:
mmmmsleep · 22/02/2014 01:46

Min My heart is with you and Will. I'm so glad you're at the hospice where you can both be more peaceful and you can be supported more as well. Thinking of you.

Lovely we shaved DS ' hair off when it started falling out but he was getting distressed by it falling out into the night and into his dummy. He took it all in his stride. We just told him he was going to get a haircut to stop the hair getting in his mouth. He hasn't commented on having no hair since. He had gorgeous surfer dude style hair before so I was gutted when it happened and it made it all more real. It still serves as a mark for me and sometimes gets me down but doesn't bother him. For me shaving it was a way of gaining control over it. He's the third member of my family I've had to shave for chemo though so it just seemed the right thing for me. The benefit of them being so young is that they really do take each day as it comes and as long as I keep it together in front of him and try to find fun in things we do he just takes it all on and gets on with it. Today we played hide and seek with the anaesthetist and operating staff as they were all masked up when we got in the operating room so I tried to tell him they were playing a game and he had to try to find his anaesthetist . It helped make it less scary. They are such troopers though. He has even bonded with wiggly now and helps the nurse push his Meds into it and unclamp. He's only 2 1/2. Still hates having his dressing changed though and I've just seen the job that was done today...looks like I'll be redoing tomorrow so time for screams :-(

No cake sorry you've been having a tough time. I'm so glad the scan was good news but I know what you mean about the anxiety around them. One of DS' surgeons said "so his tumour grew on last scan then?" And we said no it was same. Now I'm stuck worrying if she knew something we don't or if it was just a mistake from someone meeting us for first time trying to get to grips with the story :-(

Hi to everyone else . DS just woke so off I go....

minmooch · 22/02/2014 19:15

We had a much calmer night last night. The hospice is an amazing place and we feel very safe there. The Drs here are firmly in the belief that the shingles is the main problem for Will right now and that with acute medication his confusion should ease a little but may take a day or two as it has obviously taken a very strong hold. Added to this confusion is agitation from the high dosage of steroids so they are going to gently reduce this dosage. Although it won't change the outcome hopefully it will give my darling child some calm time and that's all we can hope for now. I have come home to see my other son and get some sleep before returning tomorrow.

I know that Will is in the right place and they will do all they can to make this part if the journey as dignified and gentle as possible.

Love and strength to all xxxxx

mmmmsleep · 22/02/2014 19:18

min I'm so glad the team at the hospice are helping to get will comfortable. my thoughts are with you xxx

Original poster
Twunk · 22/02/2014 19:18

I'm pleased to hear that the worst of his symptoms should get under control a bit Min. Glad the hospice is a nice place. They do amazing work xxxxx

OP posts:
Fivemoreminutesmummy · 22/02/2014 20:30

Thinking of you, min and family. Wishing you strength and peace and holding you in my thoughts.

Sillybillybob · 23/02/2014 10:37

min glad the hospice is a good place. Friends of ours whose son will not recover from neuroblastoma have said that they have found our local children's hospice to be a wonderful place. Much calmer and peaceful and helpful than the hospital. I'm so pleased he is calmer and the disorientation is only temporary. It must be so terrifying for all of you. Sending loads of love, hugs, support as ever x

Sillybillybob · 23/02/2014 10:40

Re: head shaving, J was just 3 at diagnosis. His hair didn't bother him. He was more bothered about having his head shaved so we didn't. Looking back at the photos where he has a couple of strands of wispy hair are grim for me but don't bother him at all. And of course every strand went with high dose chemo so he lost it twice but both times it was upsetting for me rather than him.

Original poster
Twunk · 23/02/2014 18:57

I've just washed Alex's hair for the first time in 6 months! SmileSmileSmile

Thinking of you all, especially Min xx

OP posts:
unbuckle · 23/02/2014 19:32

That must feel amazing, twunk! Isaac is having cycle 4 of 12 high intensity chemo this week and his hair is actually growing!

Hoping for a peaceful night for us all, especially min and will.

expatinscotland · 23/02/2014 19:35

min, thinking of you.xx

Nocakeformeplease · 23/02/2014 20:39

min thinking of you always and sending you love and strength. I'm so glad the hospice had helped Will feel a bit safer and calmer. I really hope he has a peaceful night xxx

They should really think/check their facts before they speak mmmsleep - as if you haven't got enough going on without additional things to worry about. I really hope the op went okay and that Ollie is comfortable x

lovelychops DS was 4.4 when he first lost his hair - I appreciate it is slightly different as he had quite short cropped hair anyway, but I have been amazed how he and all his friends have taken the hair thing in their stride. It really is a non issue to them - I on the other hand cried my eyes out when it first happened and then again when it grew back for a bit as I convinced myself it meant the chemo wasn't working. We even joke about it now - when I do DD's hair I tell him I need to do his as it's all messy - he thinks its hilarious Smile. Where about are you btw? There are a few of us at the Marsden in Sutton if you happen to be in the SE?

Twunk thank you Thanks. Actually it is a comfort. I just feel like everyone expects me to be so relieved about the treatment coming to an end, as if that is it all over. Overwhelmed really sums it up for me too - I feel I could climb into bed and stay there for a week.

My sister and family have been here all weekend so D has had lots of fun. Lovely for me too. D is supposed to be back at school tomorrow but he is almost certainly neutropenic so have decided to keep him off until bloods are done again on tue. I know they say it is not necessary but he's had such a bad run of infections/hospital stays that I don't want to take any chances. My new job is going really well, and actually it's been really nice having my mind taken off things if only for a few minutes at a time.

Much love to unbuckle, tabitha, Trazzles and anyone I've missed x

minmooch · 23/02/2014 22:05

Shingles has got too much of a hold. We are nearing the very end. :-(

thornrose · 23/02/2014 22:11

I'm so very sorry min it's just so unfair, you're both in my thoughts tonight x

Nocakeformeplease · 23/02/2014 22:13

Oh min my darling I am so, so, sorry. I wish with all my heart there was something, anything I could do. I hope desperately that they can do something to make Will comfortable. I am praying for you and your precious boy xxx

outtolunchagain · 23/02/2014 22:14

Oh min I am so sorry,no words but we have a candle lit this evening .I hope Will is comfortable , no one should have to go through thisHmm

mummylin2495 · 23/02/2014 22:30

I am so sorry to see your latest update. I hope your son is made as comfortable as possible. You are both in my thoughts.

Original poster
Twunk · 23/02/2014 22:33

(((((((((Min))))))))))
Holding your hand
Love to you all

OP posts:
unbuckle · 23/02/2014 22:38

((((Min))), so sorry. I hope that will is as comfortable as he can be, and that you're getting all the support you can in RL. No one should have to face this.

Xxxxx

Stinkyfeet · 23/02/2014 22:39

Oh min I don't know what to say. Thinking of you and your boys tonight. I hope Will is comfortable.

Sending you strength. xx

tunnocksteacake · 23/02/2014 22:43

This reply has been deleted

Message withdrawn at poster's request.

Sillybillybob · 23/02/2014 23:00

((((((((((Min))))))))))

Teawaster · 23/02/2014 23:20

I am so sorry. I have never posted on this thread before but have been following Wills journey and have been inspired by your selfless posts and your continuous concern for others during your awful time.

I hope Will is as comfortable as can be and you and your family have enough support to get through this difficult time

kissmyheathenass · 24/02/2014 00:28

Min, I am so sad to read your update. Wishing will a peaceful night. And may you find strength when you need it. X