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Please please help with my son's never-ending illness

(369 Posts)
Twunk Thu 25-Jul-13 10:47:03

I honestly think I am losing the plot. sad

Brief synopsis

DS2 has just turned 4. He was premature and had all sorts of issues in the first 6 months but has been healthy since then. He was breast fed until he was 3 and had normal run of short illnesses.

June 10th he developed a fever. His throat hurt and muscles ached. The fever lasted about 5 days. He recovered but looked pale and tired.

A week and a half later it came back - much worse. I took him to the doctor because he had a lot of pain in his legs and couldn't walk/stand. He had blood tests and I was called and told to take him to hospital, they thought he had leukaemia. Thankfully after a couple of retests they concluded it wasn't. He got better and started walking after 5-7 days.

One week later he got the fever again, but this lasted 48 hours.

Another week and he got it again. Stopped walking and hasn't done since. He fever lasted about 24 hours. This was the weekend before last. However, he's looked much better and been laughing and playing and crawling about. Eating normally too.

This morning he has another fever. I've made an appointment at the doctor but I am just at my wits' end.

His blood tests showed that it is probably a virus. He's anaemic (blood iron fine). Anyone had/heard of this? Please help I'm close to going crazy.

Thanks

Twunk Thu 25-Jul-13 10:48:19

He's had a urine sample done, and his joints have been scanned (ultrasound). All clear.

Caster8 Thu 25-Jul-13 10:57:50

I am sorry, I have no idea. But will bump for you.

Quangle Thu 25-Jul-13 11:00:07

No idea but just bumping for you. Sounds really stressful for you.

All I would say is that DD had a string of vomiting episodes that lasted for six months - she lost a lot of weight and would complain of pains in her legs in the end I started to think she had something really serious. She would cry with exhaustion in the middle of the day - which for a 5yo was just weird. I took her to the dr so many times I lost count and in the end we saw a paediatrician. They did loads and loads of tests and concluded in the end it had probably been post viral. Really hope you get to the bottom of this and it turns out to be something and nothing, as in our case.

Twunk Thu 25-Jul-13 11:11:54

Thanks Quangle! Deep down I think it's post-viral or a virus he can't get rid of, and he's had so many tests I'm sure something sinister would have turned up? (It nearly did!) but there's just that niggle. And the Groundhog Day feeling is just so demoralizing too - every time I think he's getting over it, up it pops. The leukaemia scare aged me 10 years and has made me really quite anxious.

Twunk Thu 25-Jul-13 13:35:53

Bump? Anyone else had anything similar happen?

LongGoneBeforeDaylight Thu 25-Jul-13 13:44:39

Glandular fever? Sounds post viral. There has been a very nasty bug this spring that seems to go away and come back again. I had 2 years off following glandular fever in my early 20s and I have been off work for the first time since that with similar sort of thing. Lots of rest, gradually increasing activity not doing loads when he feels okay and then crashing, vitamins to try and help him shift the virus. Post viral stuff can be resolutely very physical and scary (I used to get loads of nosebleeds and bruises which scared my doctors but nothing was really wrong according to their tests), but it is very benign and it will go away, just have to treat energy like it's money - don't go overdrawn, don't spend what you don't have, try to save it up by resting and he will turn a corner, promise.

larrygrylls Thu 25-Jul-13 14:10:45

Something parasitic? They tend to give cycles of fever depending on the life cycle of the parasite.

I would, in any event, insist on a lot more tests at a specialist children's hospital.

Twunk Thu 25-Jul-13 14:25:04

Thanks longbefore it does seem to come on after a day when he's done a little bit more. You do make a lot of sense.

larrygrylls I will suggest that to the doctor tomorrow (not thought of parasite at all) and ask about the children's hospital - there's one in Utrecht (am in holland)

PJM18 Thu 25-Jul-13 23:08:30

Is he limping when he tries to walk or can he just not weight bear at all? My son had a fever when he was 3 and the next day wouldn't walk. We took him to hospital and he had blood tests and ultrasound of his hips which were normal. He was diagnosed with irritable hip which was due to a viral infection and it took about 3 weeks for him to walk normally. Not sure if this would explain ongoing fever however and if it was this you may notice him not moving one leg so much when lying down.

Twunk Thu 25-Jul-13 23:29:31

Some have suggested it but I'm not sure as he's bed able to crawl. Tbh I'm not sure it isn't psychological which I feel is ore worrying. Today he was saying it hand and foot hurt. It's all very odd.

lisad123everybodydancenow Thu 25-Jul-13 23:46:38

Message withdrawn at poster's request.

Twunk Fri 26-Jul-13 08:55:26

He's been referred to the local hospital and we go at 11.30 our time. Doc looked worried sad

bamboostalks Fri 26-Jul-13 09:01:54

Good luck. How horribly worrying for you. These things do tend to settle. It's hard to believe that when you're in the thick of it.

Twunk Fri 26-Jul-13 09:12:54

Thanks bamboo - I'm a wreck after no sleep. This is horrible :-(

Twunk Fri 26-Jul-13 11:30:10

He's having tests for everything - ultrasound scan on stomach, X-ray on hips, blood tests and urine test. It's going to be a long day, but I am assured they will leave no stone unturned.

inneedofrain Fri 26-Jul-13 11:54:31

I can only agree with the advice up screen

Hopefully you will know what you are dealing with by the end of the day

Fingers crossed it "just" a virus

Unmn hugs

Twunk Fri 26-Jul-13 13:07:16

He's had everything but the urine tests so just sitting here waiting for the doctor. I nearly fainted in the ultrasound room because they brought the doctor in to look and I got upset about it. He seemed to be looking at his liver sad

Quangle Fri 26-Jul-13 13:45:25

Twunk you poor thing. Glad they are looking at everything and hoping you get the answer that it's just one of those things.

Twunk Fri 26-Jul-13 13:45:26

Doctor has been in (I love holland for the speed of test results and the computer systems!)

All the nasties have been ruled out (at least for now!). He doesn't know yet about RA but thinks its unlikely as his fever will be higher. We're also waiting for glandular fever results.

We're staying in hospital until Monday and if he gets any worse we will be transferred to the children's hospital in Utrecht. He's sitting up and gently moaning whilst watching Cars2.

I'm worried but mostly relieved.

Twunk Fri 26-Jul-13 17:39:57

Unfortunately I spoke too soon. Tests were done manually after I got the all-clear and he has leukaemia. I'm broken

honeyking Fri 26-Jul-13 18:13:08

Gosh, I honestly do not know what to say, I am so sorry to hear this about your little boy. Words fail me.

Do you have some support around?

Wishing you lots of hugs and support from London to Holland.

There are some lovely ladies on here that will be along soon to offer more support and advice.

Take care.

NulliusInBlurba Fri 26-Jul-13 18:23:22

So sorry to hear that Twunk, it's the worst possible news, and so frustrating after you thought he'd had the all-clear. What kind of support network do you have there? Can any family fly/drive over to be with you straight away? It's the kind of thing neither of you should be facing alone.

AvonCallingBarksdale Fri 26-Jul-13 18:30:48

Just read this thread - so sorry to hear your news. Do you have someone with you now? Do you have friends/family/partner in Holland? Keep posting.

SantanaLopez Fri 26-Jul-13 18:31:12

I don't have any words of advice but sending you lots of good wishes and hugs, for you and for your boy.

Caster8 Fri 26-Jul-13 18:35:57

So so sorry.
I will pray for you all if that is ok? Hope you are not offended by me writing that?

Do you have friends/family to come and support you at this time?

mrsdinklage Fri 26-Jul-13 18:42:14

Twunk - I am so sorry, hugs and prayers for you all.

Badvoc Fri 26-Jul-13 18:47:07

So sorry op.
Sending love x

MoreThanWords Fri 26-Jul-13 18:51:21

Sending you love, strength and positive thoughts to get through this x I assume treatment will start immediately.

Thinking of you x

Kveta Fri 26-Jul-13 18:54:04

Oh no twunk sad hope it is a very treatable one, and they have a plan lined up soon.

xx

Twunk Fri 26-Jul-13 19:05:15

Thanks everyone - DH Is here and they're letting us stay in a room all together tonight. We're in a "local" hospital and will be moved to Utrecht for treatment - but I wish we could stay here as they're so lovely (just don't have the facilities) and it's 5 minutes drive from our house.

All my friends are away on holiday! It is the end of the first week of the school holidays and they've all gone. The ones I would ask for help from anyway.

I called my parents earlier - they're at my sisters in SW France - I assumed they'd come straight here but they've not been in touch. Understandably they were very shocked.

My sister is also on holiday (mum and dad are looking after their house). Don't know about my brother. PIL have just moved to bloody Japan! for a year.

All in all we can rely on each other for now. sad

Twunk Fri 26-Jul-13 19:06:58

I'm an atheist but not offended by prayers or good vibes. Thank you.

They know they have it early and think it's the most common type. We find out Monday.

permaquandry Fri 26-Jul-13 19:18:34

Twunk, I'm so sorry for you, DH and especially your DS. I wish him huge strength and get well wishes.

I can't understand how it's taken so many attempts and tests to diagnose. I hope it's because it is very early days and completely treatable.

If you need your parents to come, tell them. They may just not know what to do and are waiting to do whatever you want them to do.

Will be thinking of you.

mummylin Fri 26-Jul-13 19:18:46

So sorry you are having to go through this, wishing your son the best possible outcome.

Freesia2013 Fri 26-Jul-13 19:18:59

Try to be positive as at least the doctors know what it is now, sending you best wishes and hope for your boy xx

ghosteditor Fri 26-Jul-13 19:25:14

Twunk, I don't know you, but I'm wishing you and your son all the strength in the world, and speedy treatment and healing.

When you're ready do start a thread for support - there are a lot of wise and kind mamas here.

Big hugs. brew

TabithaMcKitten Fri 26-Jul-13 19:26:07

When I read your posts I immediately thought of leukaemia, but saw he had had tests previously for it so i didn't post. I'm so sorry that this has happened, but I am 18 months on from the horrible day you are having today and can promise you that you will get through it. My son was diagnosed with ALL in January 2012 at the age of 3 and the feeling upon diagnosis is indescribable. It is very unfair that this has happened, but you will amaze yourself with your ability to cope and your son's bravery and resilience will astound you. At times you will feel like you will never be happy again, but we are actually happier than ever believe it or not!

Leukaemia is cancer research's success story - the treatment is amazing. When my son was diagnosed the consultant described it as 'life threatening if nothing is done, but we know how to cure it and we will'.

If you have any questions at all, no matter how silly or scary you may think they are, please message me and I would be glad to help. I am wishing you and your family all the very best xxxx

orangepudding Fri 26-Jul-13 19:26:13

Twunk, I'm so sorry to hear your son is so unwell. I hope he makes a full recovery and some of your family are available to give you the support you need.

PseudoBadger Fri 26-Jul-13 19:30:10

Oh I'm so sorry. Your poor boy sad I'm thinking of you all xx

AIMGA Fri 26-Jul-13 19:31:57

ALL my thoughts are with you Twunk xx

StillSlightlyCrumpled Fri 26-Jul-13 19:32:18

Oh Twunk, what a dreadful shock for you all sad.

Tabitha that was such a lovely post & I hope your DS is doing well.

Twunk adding a hand to hold and positive thoughts for you and your family x

Pozzled Fri 26-Jul-13 19:39:06

Twunk, so sorry to hear your news. Thinking of you and sending positive vibes and wishes for your DD.

Sticklebug Fri 26-Jul-13 19:44:18

Sending hugs and posiive vibes across the miles. Will also pray for you and your boy.

Caught early, leukemia has a really good prognosis. Try not to look online - you only hear the bad news stories....

Twunk Fri 26-Jul-13 19:45:32

Tabitha you have just made me cry (yet again). Thank you for posting such encouraging news. I'm about to tell DH what the Dr said. Yes this must be very early stages - though he has anaemia his platelets are fine (plus results were clearly inconclusive 3 weeks ago).

I am scared about the treatment and poor Alex (I feel happier naming him) suffering. I wish I could take it for him - I'm hard I went through a syntocin induced labour with no pain relief ffs!

This is so fucking scary.

Quangle Fri 26-Jul-13 19:53:34

Oh twunk. I'm so sorry to read this. Thank goodness you persisted in seeking tests. I can't imagine how you are feeling but I know there's amazing support and advice on here. Thinking of you and DS.

TabithaMcKitten Fri 26-Jul-13 19:54:09

Sorry for making you cry! Honestly, soon this will feel like 'just' a blip - it sounds flippant, but it's true. My little boy is the picture of health right now - he starts school in September and enjoys going to nursery, gymnastics lessons and playing with his big brother and dog. Nobody would know he had anything going on. I was also told that it was picked up early - he had probably had it for a couple of weeks, if that. In a way it made it harder to cope with the shock of the diagnosis as he was not unwell in any way, I can imagine that having clear test results would have made this seem even more unreal.

Another bizarre thing I will say is that he is a 'good' age to get it - he will adjust to your new normal really quickly and will get you all through this journey. My oldest child was also 5 when his brother was diagnosed so if you've got any questions about that too just shout!

You sound strong and positive already which is wonderful x x

Poppins27 Fri 26-Jul-13 19:55:16

Twunk I couldn't possibly see this thread and not send my biggest best wishes to you and will keep everything crossed that Alex is feeling better soon. I have no experience of this or words of wisdom to offer, just an understanding as a mum of how helpless I imagine you feel right now. Sending positive & healthy thoughts in abundance in your direction xx

youarewinning Fri 26-Jul-13 20:01:29

Oh no - I'm so sorry your going through this. Sending lot's of hugs your way.

I'm glad you followed your instinct and kept going to dr even though the news is not good.

Twunk Fri 26-Jul-13 20:03:12

We're all lined up - DS1 is playing with the hospital bed he's chuffed to be sleeping in, and Alex is lying next to me in a cot. We're watching Cars2 on repeat.

I'm trying to stop myself thinking. I'm going to be spending a lot of time online I think....

I've only read the MacMillan site so as to get a nice kind view of what happens next. It was actually reassuring as i was just told "2 years" by the doctor. I will stay away from the rest of the Internet (other than MN and Facebook!).

Alex is supposed to be starting school in September. I feel bad I was looking forward to some time alone.

God knows if I'll sleep tonight, only had about an hour last night because Alex was poorly. At least now he has a slightly higher dose of paracetamol plus also diclofenac to ease his discomfort.

scratchandsniff Fri 26-Jul-13 20:03:54

This is the nightmare that every parent dreads. I can only imagine how you are feeling. I'd just like to say I'm thinking of you.

Caster8 Fri 26-Jul-13 20:05:13

Aah Tabitha. Hope your son enjoys school in September.

inneedofrain Fri 26-Jul-13 20:18:45

Twunk

I don't think there is a mum alive that would rather take on all the treatment in the world than watch there kids going through it

I am unbelievably sorry that Alex is going to have to face this but he is going to have the support and l

malteserzz Fri 26-Jul-13 20:21:09

Sorry to hear this twunk thinking of you all x

inneedofrain Fri 26-Jul-13 20:27:45

Twunk

I don't think there is a mum alive that wouldnt rather take on all the treatment in the world than watch there kids going through it

I am unbelievably sorry that Alex is going to have to face this but he is going to have the support and love of his wonderful family.

At the moment you must feel like your world has been turned upside down, it such a shame that for the moment you don't have any real life support. I am sure your family and friends will rally round ASAP and give you both practical support and a emotional support

Until then I hope it offers a very small amount of comfort to know that people all over the world are thinking of your family and especially Alex we are sending positive vibes and prays for you all

Thinking of Alex and your family and wishing you all my strength and sending you all my love and hopes for a good prognosis

Twunk, I am so sorry to hear about Alex. Fingers crossed that the hospital will get him feeling well and better soon. xx

Nocakeformeplease Fri 26-Jul-13 21:02:32

Oh my darling. Six weeks ago we were where you are today - our gorgeous four year old was diagnosed with a kidney tumour (Wilms). There is nothing that can prepare you for that sort of news. For days I expected to wake up and find it had all been a terrible nightmare. At that time I really thought I would never smile again.

I spoke via PM to a lovely MNetter who said something that stuck with me and really helped me in those early days - she said "please know that this is probably the worst stage". And she was absolutely right. I'm not going to pretend its all a bed of roses now, but in my experience, once you know for certain what you are facing and what the treatment plan is, it's much easier to deal with.

You will get through this. You will find a strength you never knew you had. DS's consultant assures me it is much more traumatic for us as parents and that at this age they are unlikely to even remember much about it (bar remembering being in hospital a lot). Even six weeks in he has astounded me with his bravery and acceptance. I am so bloody proud of him.

We are all here with you every step of the way.

Tabitha - its lovely to hear how well your DS is doing smile

minmooch Fri 26-Jul-13 21:06:52

I am so sorry to read of your DS' diagnosis. It is very frightening indeed. My DS was diagnosed with a brain tumour just days before his 16 th birthday, nearly two years ago. It is a long hard journey but he is still with us. Cancer is so horrid but desperately so when it hits a child.

There is a support thread on here titled Children with Cancer. There are other parents there whose children are going through treatment for various cancers. Please join us if and when you feel like it.

I hope that Alex's treatment starts soon and that it is gentle on him. Xxx

Queenmarigold Fri 26-Jul-13 21:10:07

I know how you feel.
Pm me if you need to talk.

You can and will get through this- and so can he. The initial shock and next few days are tough, but you will settle into a different routine. Make sure you understand the therapy plan and protocol.

tinypumpkin Fri 26-Jul-13 21:12:43

I just wanted to post and say that I am keeping you, your son and your family in my thoughts. I have no wise words but I have been there when as a parent you hear news that is just indescribable (not cancer in our case).

I hope that you can feel the MN support around you and that you have some great medical support when you get transferred.

Sparklyfeet Fri 26-Jul-13 21:13:36

I'm so sorry to hear you are going through this. Such devastating news for you. Thinking of you and sending lots of positive vibes and strength for you and Alex in the weeks ahead. X

sybilfaulty Fri 26-Jul-13 21:13:54

So sorry to hear this. Thinking of you

Oh Twunk, another hand to hold. I'm so sorry this is happening to you, Alex, ds1 and dh. Hold each other close. Alex will amaze you I'm sure. And bloody well done you for keep going back, you played a big part in making sure it was diagnosed as early as possible xx

clippityclop Fri 26-Jul-13 21:23:10

Sending prayers and best wishes to you all. Hope you're able to rest tonight.

You should be very proud of yourself for getting him proper testing and medical attention, as now he has access to the best possible treatment. He is very lucky to have you. Lots of love to you, your family and your brave little boy thanks

idiot55 Fri 26-Jul-13 21:44:24

You have had some lovely words of support, I'm another one thinking of you. X

Howstricks Fri 26-Jul-13 21:50:37

My love and prayers to you all. Hang in there.

Twunk Fri 26-Jul-13 22:29:50

Nocake thank you for taking the time to post when going through your own son's treatment. I hope he continues to progress well. I really do appreciate the encouraging words.

My sister is making plans to come soon, and I will ask my parents what their plans are tomorrow. My mum nursed my sister through some horrendous breast cancer treatment only 2 years ago, so I'll bet she's in a bit of a state not wanting to go through all that again.

Alex is now sleeping peacefully. His fever has subsided and he seemed a bit happier before bed.

We're all bunked up together and I'm so pleased we are. DS1 was very happy that we didn't notice all the biscuits he ate, plus he got to play with the uppy-downy hospital bed he's sleeping in. DH is, apparently, defeating the Greeks in "civilization" hmm on his MacBook.

I'm trying to stay positive in between bouts of numbing despair. I'm frightened to sleep because I will remember when I wake up.

Twunk Fri 26-Jul-13 22:30:34

And I appreciate every bit of MN love and best wishes, thank you all x

BeaWheesht Sat 27-Jul-13 00:33:06

Oh Twunk I'm so sorry you must be in absolute shock. Well done you for pushing for a diagnosis though.

Lots of love

MrsFrederickWentworth Sat 27-Jul-13 00:42:53

Poor poor you.

But well.done for spotting it and insisting on addressing the issue. And I am sure Dutch hospitals will be brilliant.

Will think of you.

lisad123everybodydancenow Sat 27-Jul-13 01:36:06

Message withdrawn at poster's request.

Nocakeformeplease Sat 27-Jul-13 01:55:48

I remember saying exactly the same thing about not wanting to go to sleep because I didn't want to forget and remember again in the morning.

I'm so glad you are all together tonight. Cling to each other and your friends and family for now. Mine literally pulled me through those first few dark days. I wish with all my heart I could make this bit easier for you.

Children generally respond very well to treatment and iim sure your gorgeous boy will amaze you with his strength and resilience. It sounds like this was caught very early too which is really positive. You will get through this - I know that is probably hard to believe now but you will.

I hope you get some more answers tomorrow. Thinking if you all xxx

bamboostalks Sat 27-Jul-13 08:31:31

So very sorry to hear this Twunk. All your fears. I wish you all the best.

Twunk Sat 27-Jul-13 08:45:28

This morning he's in a good mood and has eaten 2 sandwiches! smile

His hand hurts so he's using the hand with the canula in to move everything - I had to feed him his sandwich. His hips are also painful.

But he's been playing with my bed and now he's playing with his cars.

QOD Sat 27-Jul-13 08:55:19

Ah I was reading this and thinking glandular fever etc etc and then my heart lurched.
I'm sorry, I hate that this happens to children. Sadly there are too many families on here affected, but we are all here for you and each other x

Twunk Sat 27-Jul-13 08:57:58

I know it's rare that induction therapy doesn't work but that's currently taking up all my thoughts. That and the treatment he's going to have. I need a time machine sad

Thank goodness you trusted your instructs and sought a diagnosis so carefully.

Alex is very blessed to have a mum like you who knows him so well and knows when things aren't right. You will be so valuable to him when the treatment starts and he needs someone who can make it a little better (not that you're not doing that now but ou know what I mean).

Praying for you all.

TabithaMcKitten Sat 27-Jul-13 09:09:32

The beauty of ALL is that they know what to do to cure it and have an answer and plan for everything. Our leukaemia specialist nurse told us that they don't really have good and bad results, more good and 'less good'.

Still thinking of you and your lovely boy xx

Twunk Sat 27-Jul-13 09:52:12

Thanks tabitha xx

Survival rates keep going through my head. I can't stop it.

DH broke down this morning - his dad called (he's living in Japan). It's rare he actually misses his dad, but we could do with his logic and calmness right now.

Willabywallaby Sat 27-Jul-13 10:21:56

I'm so sorry to read about this, you and all your family are in my thoughts.

EatYourCrusts Sat 27-Jul-13 16:54:35

I started reading this thinking it sounds quite like my DD who also has had night sweats and fevers, couldn't walk, pain in limbs, also she's had swollen lymph nodes, drastic weight loss, tired all the time.
I will take her back to the doctor on Monday. They did some blood tests to rule out lymphoma (which scared me of course), and said it was probably a lingering virus with post viral arthritis, but maybe I need to ask for more tests.

Twunk, so sorry your news has been so worrying. I will be thinking about you and Alex. Good luck. flowers

SolomanDaisy Sat 27-Jul-13 19:50:52

I'm so sorry, I read the thread hoping that it would be good news. Have you got support in the Netherlands? If there's anything a stranger can help with, please let me know.

Queenmarigold Sat 27-Jul-13 20:07:47

How are you today? How's your little boy? Thinking of you - and him x

NervyWervy Sat 27-Jul-13 20:31:37

Thinking of you Twunk, and wishing Alex all the best. Be kind to yourself and do whatever you can to make life that tiny bit easier for a while. What a great mum you are for persevering with getting an answer. X

Twunk Sat 27-Jul-13 21:28:08

QueenMarigold we are okay today. We're in a kind of limbo because I know we're going to the hospital in Utrecht on Monday and it will all get serious.

I'll try and add a couple of photos to my profile - if I can do that on my phone.

Alex has eaten no less than 4 sprinkles sandwiches (whole rounds), a cake and a fun size smarties box today. His diet is largely chocolate based which is fine as long as he has calories I don't care.

My parents are coming next week - I hadn't heard from them but they were discussing what to do and looking into flights. I called mum and spoke to her - she said she and dad would take it in turns to come and look after us all. I'm 38 but I still need my mum sad

Alex has had a blood transfusion and is much the better for it. What is very sad for me is that he cannot bear to be hugged. He's such a tactile child who loves hugs and kisses but it's so painful for him. He's beginning to understand we're going to have to stay in hospital for a while.

He's drinking lots of milk - his favourite drink. The nurse had to get some from another ward! All good calories though smile

Twunk Sat 27-Jul-13 21:42:11

Solomon - so many of my friends are away on holiday at the moment, but generally I do have a big support network - I'm a member of a club through which I know many people plus the parents at DS1's school are brilliant. I know a few families in my neighbourhood too.

Twunk Sat 27-Jul-13 21:44:15

Eatyourcrusts - they would have looked for leukaemic cells as a matter of course, but as you can see from Alex he got at least 3 false negatives so go back to your GP at least for reassurance. I hope your DD makes a swift recovery xx

Vajazzler Sat 27-Jul-13 21:53:11

I never know what to say on threads like these but have a hug (()) thinking of you and your family x

AlwaysWashing Sat 27-Jul-13 21:59:08

How is it you can feel so deeply for someone you have never and will never know I wonder. I'm fighting back tears for you and your boy Twunk.
They're so, so precious and then something like this happens and you wonder how you will ever be able to draw breath again. My DS1 had meningitis and I thought in the first hours of diagnosis that I would shatter into a million pieces - we later found after all the nastier tests that it was viral and we breathed again but it was enough to know that I would never be the same again. I am sending you wishes of immense strength so you will be able to carry you and your family through this, to get your boy well again.
I sincerely hope that the treatment goes well and Alex will be fit and well as soon as possible. X

Trazzletoes Sat 27-Jul-13 22:07:53

Hi twunk massive hugs from yet another mum who understands, to a degree, what you are going through.

You will get through this.

LegoAcupuncture Sat 27-Jul-13 22:14:36

So sorry to here this. Sending positive vibes for your whole family.

CoteDAzur Sat 27-Jul-13 22:16:09

So sorry you are going through this, Twunk sad

DaPrincessBride Sat 27-Jul-13 22:16:49

I just wanted to send you all hugs and prayers that Alex is fit and well soon. With all the love and care he is clearly getting, he is in the best possible hands x

5madthings Sat 27-Jul-13 22:24:36

So.sorry to hear this, thinking of you all and sending love and strength xxxx

Twunk Sat 27-Jul-13 22:39:31

I've tried to add pictures but it turned them all through 90 degrees! Wft?

Thanks all. I've lurked on mumsnet (posting occasionally with different usernames) for 5 years and have never needed to post before all this started, but the response I've had is just amazing.

Alex is STILL playing with his bed...it's 11.40pm. Right, time to get tough

mummylin Sun 28-Jul-13 00:49:21

He is a cute little boy and I hope he recovers as quick as possible. Good on you on chasing up a diagnosis. Wishing you well.

Apileofballyhoo Sun 28-Jul-13 01:02:55

Just adding good wishes and prayers. You sound like a lovely Mum. It must have been the most terrible shock.

Apileofballyhoo Sun 28-Jul-13 01:08:30

It sounds like you have a lovely supportive family too. I really will be praying for all of you and especially little Alex, for a speedy recovery and that he won't have pain.

ShiftyFades Sun 28-Jul-13 05:08:53

Here's my hand, squeeze it when you need to. I'm so sorry you are going through this. Alex is lucky to have you there fighting for him.
I'll be thinking of you all and I hope your mum and dad arrive shortly xx

ShiftyFades Sun 28-Jul-13 05:08:53

Here's my hand, squeeze it when you need to. I'm so sorry you are going through this. Alex is lucky to have you there fighting for him.
I'll be thinking of you all and I hope your mum and dad arrive shortly xx

tinypumpkin Sun 28-Jul-13 07:44:14

Another one popping in to see how you are all doing. Thanks for updating, that is so kind of you. I hope you can sense the love and support here for you and your family. Thinking of you as you move to Utrecht on Monday x

Coro Sun 28-Jul-13 08:26:34

Thinking of you all. Hugs and love. X

RatherBeOnThePiste Sun 28-Jul-13 10:32:57

Thinking of you all here too, sending much love from London, gentle hugs for Alex, big ones for you X

Twunk Sun 28-Jul-13 16:00:36

Alex is a changed child since his blood transfusion - pink, smiley, and chatty. His fever is way down too, but he still has a lot of pain. Thankfully we've all realized this needs to be actively managed so the nurses are always on time with it now. I've even been able to give him a gentle hug just now.

I had a bad night - he kept waking screaming so we both got minimal sleep. I fell asleep when DH got here at 12 and could hear DS1 and Alex laughing together as I dropped off.

He's watching car racing on the TV and loving it!

Dreading tomorrow, but have had lots of reassurance that the children's hospital is amazing.

And people are being just amazing. So generous and kind it is a beautiful illustration of just how bloody fantastic people can be.

MrsDeVere Sun 28-Jul-13 16:08:20

I am so sorry Twunk I was just coming on to urge you to get him retested and demand more invasive tests.

But I see that he has now been dx sad

I am glad the bt has perked him up. They are like magic aren't they? smile

Sending love to you and Alex and reassurance that you will find strength within you that you never imagined and that your little boy will astound you.

X

Twunk Sun 28-Jul-13 16:17:54

I'm already finding resources I never knew I had. After almost no sleep (for 3 nights) Alex and I had a lovely morning racing our beds (up and down!) and laughing at things. We lined up all his cars and took photos of them. It was only when I was expecting DH to arrive and he was a late I finally ran out steam.

He's currently transfixed by a programme called "transport world" which seems to have been created for him smile

MrsDeVere Sun 28-Jul-13 16:18:54

He sounds utterly delightful smile

Twunk Sun 28-Jul-13 16:23:00

He is smile

FriskyMare Sun 28-Jul-13 16:36:28

Another one here Twunk who knows what you are going through. We are now over 13 years from that horrible day when dd aged 2.4 was diagnosed.
You will get through it, get as much info and help from the doctors and nurses and once treatment starts you can be more in control. We used to check off certain injections as a countdown.
It won't be easy, we had set backs, including shin pains 3 months after the end of her treatment when they thought she had relapsed (thankfully she hadn't).
She is now a happy, healthy,bright beautiful, know-it-all 15 year old!!
ps. drinking lots of milk is good, dd drank nearly 2 pints a day and we are sure it helped prevent mouth ulcers.
Lots of love to you all.xx

Twunk Sun 28-Jul-13 17:29:26

He loves milk. I wish I still breastfed as it would have given him so much comfort, but I wasn't to know and it came to a natural end.

He's so much stronger today but I know he's not better. That's what hurts so much.

DH has just come in - they've been playing together in the ward. Alex just got up and walked for the first time in 2 weeks. shock

Twunk Sun 28-Jul-13 17:29:56

Meant to say thanks friskymare <tired>

takeaway2 Sun 28-Jul-13 18:24:39

I'm so sorry to read this Twunk. My DS who is 5 was diagnosed with systemic juvenile arthritis last year this time and he was due to start reception. Thankfully because our paed was quick and wrote a letter which got gosh to react very quickly he got the treatment needed. He's on methotrexate and folic acid weekly. I know it's not the same in any way as Alex but we went through 6 weeks of fever, pain, rash, night sweats and weightloss before we got some potential answers. Still a far way from remission if at all but I'm hopeful.

Eatyourcrusts - you need to push for answers. We had 2 weeks of diagnostic tests which involved daily blood tests (nightmare) and GA to do a bone marrow aspiration, heart echoes, ct and MRI scans before they agreed on a diagnosis. And this was all at GOSH. Before that for 6 weeks we were told it was post viral infection from chickenpox, and other random diseases, nothing close to arthritis. Ironically when I put his symptoms in google I got sJIA and lupus. We ended up with the former.

Good luck. And big hugs.

Twunk Sun 28-Jul-13 19:20:20

Oh heavens your poor little boy takeaway - tbh I couldn't see anything online that presented like Alex's illness, except leukaemia - we know our children.

I hope he goes into remission soon.

Alex has had such a good day I feel terrible that he's going to have a whole heap of bad ones sad

marriedinwhiteisback Sun 28-Jul-13 19:35:12

love and prayers twunk. Oh fuck.

Quangle Sun 28-Jul-13 21:24:25

Twunk, thinking of you this weekend which I know is not the weekend you were imagining for yourselves. It's shocking how many other mums have posted to say "I know what you are going through". I really don't but I am thinking of you and upside down DS (who looks lovely). Must be hard to see him look better and remember that he's not better sad ...yet.

best wishes for the move to Utrecht. Is he having those chocolate sprinkles in his sandwiches? I have a dutch relative so lived for the times when she brought some of those over grin.

takeaway2 Sun 28-Jul-13 21:44:28

Yes I hope he goes into remission, as does Alex! smile He's currently snoring next to me (decided to snuggle into bed with me - daddy can move him later when he's back!!). He had a fab year at reception - went to school not knowing how to read or write, now is on stage 8/9 and is writing v well and doing math. He also does tennis, recently got badges for stage 2 swimming (yay he wont drown!!) and gym.

When he started school I had to meet the senco and write an inclusive learning plan for him (wrt contagious illnesses like chicken pox) due to his drug regime. He's been amazing this year. Lets hope for more and a weaning off of drugs soon.

I thank God that they found it so early. And I think and hope it's the same for you and Alex too.

Twunk Mon 29-Jul-13 07:44:48

Well yes it's D-day and I am terrified but trying not to think.

Funny you should mention the chocolate sprinkle sandwiches because his diet is almost 100% that at the moment! He's drinking lots of milk too. Very Dutch! I don't care as long as he has calories.

He saw me cry last night, the nurse asked me how I was.

Oh god it all starts today.

Twunk Mon 29-Jul-13 07:47:50

Wrt school - it is quite normal for children to be held back a year at some point so I will just have Alex start when he is ready as there is usually a range of children's ages in each class. He's not legally obliged to go before he is 5 anyway.

Sheer exhaustion meant I actually slept last night for the first time in days. Still tired though.

roughtyping Mon 29-Jul-13 07:59:32

Oh Twunk. I'm so sorry. Sending lots of positive thoughts for Alex xx

takeaway2 Mon 29-Jul-13 08:05:55

Big hugs for today. I think it's great that there's going to be action taken so quickly. I don't know about you but I oscillated between hoping that the drs got it all wrong and hoping that we start on meds that would help him get better ASAP. The not knowing part and no action part is the worst.

Positive thoughts. Xx

Kveta Mon 29-Jul-13 08:43:40

sending positive thoughts your way today.

glad he's on the hagelslag - my sister lives in Den Haag, and is VERY popular with DS when she sends him some!

MrsDeVere Mon 29-Jul-13 09:07:50

The chemo stuff is almost an anti climax. Its so 'ordinary' when they give it. Just a drip.
It does feel better to have a plan and get organised.
It seems overwhelming at first but you become an expert really quickly.
x

CoteDAzur Mon 29-Jul-13 09:10:15

Thinking of you and your brave little boy, Twunk.

Twunk Mon 29-Jul-13 09:15:43

Yes I don't know what I expected re chemo! Some sort of glowing room with weird lighting perhaps...!

People keep telling me to be strong. I don't know what that looks like.

Yes takeaway I keep thinking that they might be wrong! I know they're not though.

I wish we didn't have to go somewhere else. It adds another level of fear.

Trazzletoes Mon 29-Jul-13 09:17:13

Twunk big hugs for today. I remember refusing to sign Joe's consent form for chemo and making DH do it instead because I was so scared.

Looking back, chemo is unpleasant, of course, but not really scary after all. Hopefully you will find the same.

Sparklyfeet Mon 29-Jul-13 11:31:22

Thinking of you today Twunk and hope the move to the new hospital goes ok. Lots of love x

Cerisier Mon 29-Jul-13 12:32:22

Thinking of you, Alex and DH and hoping that today goes ok. Sending big hugs over the miles.

Twunk Mon 29-Jul-13 13:13:14

We're here and it's a great place. Ou room is small but it's fine. There's a Ronald McDonald house should we need it. DS1 is extremely taken with the fabulous rooftop playground and there is a Ronald McDonald House should we need it.

It took my DH, 3 nurses and 3 doctors (2 residents and 1 consultant) to get a canula in - and they put it in his foot in the end sad so he can't walk again.

Just waiting for blood results and then we're promised explanations etc.

€12 a day for parking, robbing bastards.

Twunk Mon 29-Jul-13 13:13:43

Repeating myself a bit there

takeaway2 Mon 29-Jul-13 13:24:24

oh... that description brought back horrible memories of canulas.... sad poor Alex. There's 'magic cream' that helps in numbing the spot where they stick the needle in - have they got that?
www.emla.co.uk/

do they also have weekly parking charges? the parking where we are is horrendous but they have a weekly pass which actually is the same price as a day's parking! you need to get it swapped at reception or something. do ask!

big hugs...

Pozzled Mon 29-Jul-13 13:30:43

Glad to hear the place is ok, it must have been quite nerve-wracking waiting to transfer there. Still thinking of you all. I hope the test results come through quickly and that you have a chance to go through all your questions and worries with the doctors.

I can't begin to imagine what you're going through, but I remember when DD1 was admitted to hospital as a toddler. It was the waiting around and not really knowing what was happening that was hard to deal with.

Twunk Mon 29-Jul-13 14:29:18

They said "oh the cardiologist is ready to see him now" and I thought "wtf?!"

Perhaps they should have pointed out it was routine first...

He's on the emergency list for tomorrow which means I cannot plan for when he's going in to theatre.

Still waiting for results.

Twunk Mon 29-Jul-13 14:31:44

No discount on parking available. Apparently I can move the car to a nearby road once it's evening and leave it there for free.... except my husband is taking it back with him of course.

MsGee Mon 29-Jul-13 14:42:03

Hi Twunk tis the lady from the other place, stalking you here as promised grin.

I am so glad you posted on here, some fantastic advice and support. Alex is an amazing boy and as people have said, you both have strength and resilience that you would never imagine. Two weeks ago you could not have imagined still coping with all you've endured this last few days and yet here you are, still going.

Anyway big love from the Gee lot to you and your boys xxx

idiot55 Mon 29-Jul-13 14:45:58

Thinking of you today, glad you are settled in the new hospital.

Twunk Mon 29-Jul-13 15:02:52

Aaaaaargh not the Gee woman! <runs>

Takeaway - they put something on his skin before the injection but I don't know what. I shall ask.

Twunk Mon 29-Jul-13 15:03:25

Thanks idiot (that seems rude).

Jemma1111 Mon 29-Jul-13 15:21:44

Twunk

I'm another who is thinking of you all , Alex sounds a lovely little boy and I wish him all the very best x

MsGee Mon 29-Jul-13 16:00:42

Twunk I quite like that I am coming to you in stereo with various social media.

Anyway, fingers crossed that the test results are as positive as possible xxx

MrsDeVere Mon 29-Jul-13 16:04:22

If the elmla cream isn't enough you can try freezy spray too.
Once he gets his line in it will be 'easier'. No more canulas.

They have to check the kid's hearts before starting chemo, yes they should have told you that.

x

Twunk Mon 29-Jul-13 20:09:20

They've apologized for the oversight.

He's scheduled for the bone marrow removal and lumbar puncture tomorrow. I say scheduled, what I meant was that he is on the emergency list so could be any time from noon.

The doctor is 99% sure it is ALL. I astounded myself, much like I did when he was 4 days old and was on a ventilator and had had seizures, how many questions I asked and how much I took in. Doctor seemed impressed with my knowledge - I've been careful what I look at but obviously I've been reading up. It's better really because their english sometimes needs help.

I'm starting to get used to the "new normal" and am quite comfy in our new room. Alex is sleeping and I am delighted because we have BBC1 and BBC2! Yay.

I even managed to eat most of a meal for the first time since Thursday.

The lovely MissGee has found an English charity in the Netherlands who will help with all this and can even help provide counseling if needed. It's nice to know there are people I can call for advice.

Twunk Mon 29-Jul-13 20:10:16

MsGee, sorry blush

MsGee Mon 29-Jul-13 20:18:24

Good to hear that you have started to eat something - you need to keep your physical health up too. And glad to hear that the new normal is becoming normal. Def try to contact the charity when the time is right.

MissGee ... sounds far too youthful for me, unless its MissGee in a MissHaversham sort of way? <ignores feminist reasoning for one day>

takeaway2 Mon 29-Jul-13 20:18:38

Oh Twunk, how quickly a new normal set in. hugs

The bone marrow thing,they'll put him under with GA which means no food from now or breakfast time.. And given that its anytime past noon, do be prepared with tantrums when lunch time comes and goes and he doesn't get to eat. Mine totally freaked when he didn't get lunch and well, he was most unimpressed when I told him we were playing a new game of not eating. (He was also 4 when it all happened). When they finally called us at 2ish to go down stairs, he was so excited thinking we were having lunch... Then fell silent when he realized we weren't at the canteen. And then totally flipped when we walked into the Operating theatre and everyone was gowned up and masked up. And the anesthetist had to put the gas mask on him. hmm

He put up the biggest fight and covered his mouth. And screamed. Then slumped. It was horrible.

It was all over in an hour or just after. I ran to get McDonald's as a treat. And then came back with it. He came round, was grumpy but v hungry. Stuffed his face, then threw up because of the GA. hmm He was fine afterwards.

Moral of the story, don't let him eat too quickly after he comes round!! grin

takeaway2 Mon 29-Jul-13 20:21:24

Yes and it's good to see that you are eating. You do need to keep up your health and well being. Whilst at GOSH we met so many kids on the same ward with cancer (we were on the immunology ward since its shared wit rhuematology) and the rooms were all double chambered to protect the kids etc. their families literally stay there for months. But so many positive stories too.

RandomMess Mon 29-Jul-13 20:23:35

So sorry to read your news x

marriedinwhiteisback Mon 29-Jul-13 20:29:44

Fingers and toes crossed. Still with love and prayers.

Twunk Mon 29-Jul-13 20:48:30

Oh takeaway it's that sort of thing I find hard. I'm normally so bloody indulgent. Mind you, he doesn't have much appetite right now so I am hoping that the morning won't be too awful in that way. I know he will freak going to theatre. I am dreading that.

Noted that I won't rush out and buy McDonalds!

MissGee I can see you wearing a crinoline and covered in cobwebs smile

takeaway2 Mon 29-Jul-13 20:53:12

Or get two lots of McDonald's!! Save one for when he's done puking!! grin

Twunk Mon 29-Jul-13 21:02:46

Buy 2, get bored, eat them both grin

takeaway2 Mon 29-Jul-13 21:03:37

Now that's talking...! wink

MsGee Mon 29-Jul-13 21:27:42

McDonalds has major food groups yes?

<brushes cobwebs aside>

Are there good food options at the hospital?

MsGee Mon 29-Jul-13 22:16:06

I ask that in a practical - hope you are able to feed yourselves well at the hospital, rather than in a nosey blase way. Hope that makes sense.

Anyway, hope you are all asleep now xx

Twunk Mon 29-Jul-13 22:46:08

I had a quite palatable meal of chicken and chips, weird fruity salad, bottle of OJ and Greek yogurt with honey and walnuts and it came to €5.85. Bloody bargain. I'm coming here in future wink

Twunk Mon 29-Jul-13 22:47:50

Neither of us is asleep. Thankfully there are 24 hour cartoon channels... blush

cq Mon 29-Jul-13 23:04:08

Another hand-holder here Twunk. Spent more time than any mother should have to at GOSH when my DD was an infant.

For your precious boy you will find reserves of strength and calm that you would never have dreamed of.

Hope you both get some sleep soon.

Twunk Tue 30-Jul-13 07:17:16

Takeaway I spoke too soon...little sod woke up and for the first day in ages he demanded breakfast! hmm

Is taking it's absence in reasonably good humor though.

Twunk Tue 30-Jul-13 07:22:48

Thanks cq - I bloody hate hospitals, though it's surprising how quickly you become institutionalised....

Nocakeformeplease Tue 30-Jul-13 07:55:14

Always the way Twunk!

I have thought of you so much over the last few days. I'm glad you are settled in the new hospital and that it wasn't as scary as you imagined. I hope today brings more answers - once you have the treatment plan things really do get a little easier. It's incredible how quickly you get used to hospitals and all the medical stuff.

FWIW I think you are doing amazingly. If there is anything at all I can do, please just give me a shout. You are not on your own xx

Twunk Tue 30-Jul-13 08:02:04

I've joined a Facebook support group which I think will be good in the medium to long term but at the moment it's scaring the living bejesus out of me. Naturally people post when they are facing problems. At the moment I am in need of unbridled optimism.

So I'll not visit until I need it. Today I just need to cope with the visit to theatre.

In the UK do they have specific people employed to play with children? I think it's a bit more involved than that - they're involved in entertainment and development too?

MrsDeVere Tue 30-Jul-13 08:06:35

Yes. They have play specialists in hospitals.
They are trained to work specifically with children on treatment and/or who are ill.

So they can use play to explain procedures to children and allow them to express any concerns they may have.

Unbridled optimism is the way to go. There is no point in thinking any other way.
x

Trazzletoes Tue 30-Jul-13 08:06:46

I don't know about elsewhere twunk but there's a charity attached to Joe's ward which stocks the playroom and employs play staff (amongst other things). They play with the children but also take the role of explaining procedures to them through play like having a Hickman line, or an MRI scan etc.

So glad you are settled. It's a frightening time. Hope today goes smoothly.

Twunk Tue 30-Jul-13 08:17:36

Thanks MrsDeVere - they asked if they had them in the UK and I had no idea!

Nocake I hope you have a lovely day with DS.

And thank you everyone for your messages - I have read them all, sorry if I don't reply to every one.

God I need to eat.

Nocakeformeplease Tue 30-Jul-13 08:31:57

twunk Before DS's diagnosis I was a terrible "googler" when it came to health matters but I made a conscious decision not to look up anything to do with his condition and only listen to his consultant and the doctors/nurses and trust that they will tell me everything On a need to know basis. Perhaps it's the wrong approach but it is all i can cope with at the moment.

I was doing so well until Sunday when I decided to look at a few sites/blogs. Although most of it was quite positive, the one negative story I read is of course the one that has stuck in my mind. So I am stepping away from the keyboard again, it really doesn't help me at the moment. Like you, I can only cope with unbridled optimism at the moment.

As you pointed out, naturally people mainly post when they are having problems so you don't really get a balanced picture. And once you have read something, you can't unread it. One suggestion I read in a help booklet, is that if you feel the need to look up stuff, get a friend to do it for you, that way they can shift through the information and edit anything 'unhelpful'.

starfishmummy Tue 30-Jul-13 08:34:57

Thinking of you and Alex.

You say there is a Ronald Macdonald house - they are lovely and if you can get a room your dh and other child would be able to stay too. You will be able to cook yourself a meal too, if you feel the need. It also gives you somewhere to go away from the ward which you may need for your own sanity!! Alex will need you to be strong for him so please look after yourself too.
And the ones here in the UK have internal phones to the hospital so you could be called back if needed.

piratecat Tue 30-Jul-13 08:46:05

just read the whole thread and wanted to add my support to you all.
i know how tiring scary and frustrating it is to have a child ill.

x

MsGee Tue 30-Jul-13 08:48:24

Hi Twunk,

Re staff in uk hospitals - as well as staff lots of other organisations go in to do special events. One if the theatre companies I work with do week long residential and include siblings too. They might do that too? Might be particularly good for M?

If you need anything googling just ask me, you know I'm always attached to Internet via at least two devices at any moment.

Thinking of you today. As others have said once you have treatment plan you know what's ahead and can start to take a breath. Xxx

Sparklyfeet Tue 30-Jul-13 08:54:44

Hi twunk. Hoping it goes ok for Alex today. Make sure you look after yourself as well. Xxx

takeaway2 Tue 30-Jul-13 09:24:37

yes they had play specialists at GOSH. they also had 'school' for the children who were long-term sick there, or needed to stay in for a long period of time. So kids who should have been in school in 'normal life' would be doing the curriculum at GOSH - with teachers going into the rooms to do regular stuff like math/english etc, I guess to make sure they don't fall behind or don't fall behind too much.

Obviously when DS was there, he was there for 2 weeks and even so, he wasn't in school yet, so what we ended up doing was going to 'nursery' which was set up so they had activities every hour - like craft, cooking demo etcetc. It was quite good as we had a structure to work round when we were waiting for the various appointments. The nurses were also good in that they would text my husband or myself whenever the dr wanted to see us, so we could always rush back upstairs.

Twunk Tue 30-Jul-13 10:39:04

(((((Nocake)))))) sorry but had to give you a hug just there.

He's gone in, much earlier than expected. I just about held it together when he was awake, but seeing him slump onto the table was just too much.

I'm waiting now for him to wake up. I'll get a call to go to recovery.

ChickenLickenSticken Tue 30-Jul-13 11:02:11

Oh Twunk, that must be so so scary and horrid. Best wishes for your little dude.

Nocakeformeplease Tue 30-Jul-13 11:26:36

All hugs gratefully received!

It's awful isn't it. I held it together until the surgeon said "don't worry, I'll take good care of him". That just about finished me off. But before I knew it, the bleeper went and he was back in recovery, a little groggy but fine.

Alex will be back with you before long demanding a happy meal!

(DS's op to remove the tumour will be 6-8 hours I think - not looking forward to that sad)

Twunk Tue 30-Jul-13 11:56:37

I play 'worder' on my iPhone to kill time. It's a word game with 9 letters and you have to find all the words in it. It's not timed and there are no high scores so it's just relaxing and non-stressy.

I always think they should offer the parents a GA too....

6-8 hours is very long. I hope it's at the shorter rather than longer end.

He's here next to me and asleep in recovery. He needs to stay flat until 1.15 so the longer he sleeps the better. It's currently 12.55 here.

Just been given an ice lolly because I've not eaten.

And now we wait for the results sad

Twunk Tue 30-Jul-13 11:57:22

God I need the loo

FoodieToo Tue 30-Jul-13 12:05:44

Twunk just a post to offer thoughts and support. I think you are in a better place now you have a diagnosis. I know that sounds mad but the uncertainty of knowing your child is ill,bringing them to doctors endlessly is truly a hell on earth.
I have been there but our case turned out to be a very serious and complex pneumonia.
I know the diagnosis you got was not what anyone would want and there are no words which can describe the fear you must feel.

But your baby is getting treated now,instead of lurching from one bout of illness to a worse bout.

I am thinking of you and Alex and sending all the good vibes possible. You sound like a remarkable human being and your beautiful baby is lucky to have you to see him through this x.

starfishmummy Tue 30-Jul-13 12:10:01

Twunk......ds recently had surgery that lasted that length of time, so I can empathise with that. Can you get out for a walk or something?

Twunk Tue 30-Jul-13 12:12:59

Nocake is the one with the long surgery - we've "just" had a biopsy and LP. Well over an hour since I was called down he is fast asleep! I really need a pee now.

I actually don't know what outside looks like any more. It's still there isn't it?

Twunk Tue 30-Jul-13 12:14:23

starfish hope your DS has made a good recovery.

MsGee Tue 30-Jul-13 12:24:41

Can you ask someone to stay with him whilst you go to the loo?

The outside is still there. If you like I can google it to double check though? grin. Point out what you can see from the window?!

Twunk Tue 30-Jul-13 13:36:08

MsGee I can green things, moving things with wheels and boxes made of bricks, concrete and glass.

I did actually run to the toilet and he didn't wake for another half hour!

He's fine, a bit spaced but fine.

MsGee Tue 30-Jul-13 14:59:05

Fingers crossed for you for the results xxx

CoteDAzur Tue 30-Jul-13 15:05:26

I wish your beautiful boy the best possible test result, Twunk.

Pozzled Tue 30-Jul-13 15:58:46

My thoughts are still with you, Twunk... Will keep my fingers crossed for good test results.

Twunk Tue 30-Jul-13 19:48:20

It's definitely ALL which is probably the best news we could have expected. This has been a very very hard day and my heart has broken in several places.

Treatment has started this evening. And so it begins. sad

marriedinwhiteisback Tue 30-Jul-13 19:51:05

Twunk, that's great - my dad had AML and I remember reading up on it. Only great in the given circumstances of course but overjoyed for you. Hopefully all will be well xxxxxxxt

takeaway2 Tue 30-Jul-13 20:12:12

I'm so sorry that its turned out to be ALL but I'm so pleased they are starting treatment tonight. Hang in there. Have they said anything about timelines of treatments??

MsGee Tue 30-Jul-13 20:23:46

Just wanted to add my support here too. I hope the treatment is going ok tonight. You know where I am. xxx

Nocakeformeplease Tue 30-Jul-13 21:47:20

Oh my lovely... I'm glad the news was as good as could have been expected, but i know what a strange, painful mix of emotions it brings (we were in a similar situation with DS's diagnosis).

I hope Alex tolerates the treatment well.

Thinking of you and with you every step of the way xx

Twunk Tue 30-Jul-13 21:55:10

We have just over a week of steroids and then a blood test to see how the leukaemia is responding - I think we'll have a strong indication then on how treatment is likely to proceed.

Then chemo starts and we can go home. DH is re-jigging the rooms so Alex and I (or DH) can stay in together (it's also a room that we can keep clean easily).

DS1 spent the day with a friend and seems all the better for it.

Our boss has leant us his car - and is going to get me a company car for at least 2 years. He's been brilliant, has quite surprised me with his kindness and generosity (though is possibly terrified we'll head back to the UK).

And in fact everyone's generosity has been amazing.

Alex is still awake. I can't be bothered to fight him.

MrsDeVere Tue 30-Jul-13 22:52:31

Hi Twunk,
be prepared for those steroids to affect Alex's behaviour.

They can make children very, very ratty and starving hungry. Hungry like you wouldn't believe!
Its a good opportunity to get as many calories into him as you can.

It can be really upsetting if your child turns into a little monster but if you know why it can help a bit.

X

Twunk Tue 30-Jul-13 23:16:27

Yes they just said they "might effect his mood" but yes I think that might be a slight understatement.

DH is stocking up on food.

I'm dreading it tbh.

MsGee Wed 31-Jul-13 07:31:56

Hi, hope you all got some sleep in the end.

I'm so glad that DH's boss is being so supportive, I've been hoping that they're being decent but the car is very kind of them.

Much strength for today, hope Alex responds well to treatment and isn't too ratty. Make sure you're eating some is the food stockpiles too. xxx

MrsDeVere Wed 31-Jul-13 07:58:36

Don't dread it smile
If you are prepared it does make it easier. The children all react differently and if it is short course you might only get a bit of trouble at the end.

Twunk Wed 31-Jul-13 09:19:17

Ok I'll try not to dread. It's all so overwhelming I'm scared of everything. I'm living in the moment but my mind does wander if I let it.

I think it's good to be forewarned but sometimes I quite enjoy ignorance. sad

I asked our boss about a car. He said, let me know if there's anything I can do? And I thought fuck it, there is. DH would never have done it so I was pleased I did. If I get a company car it will cost maximum €130 a month, we won't have to worry about petrol, road tax or maintenance and it will be new and (hopefully) reliable.

Blood test this morning went a lot better but his blood is a lot thinner owing to hyper-hydration so he bled quite a bit. I'm not great with blood. <goes green> but we both did a lot better this time.

takeaway2 Wed 31-Jul-13 09:53:00

Hang in there Twunk. You are doing ok!

Re blood tests I don't know whether they try and distract Alex? At our local hospital's children's ward they tend to put the emla cream for an hour then take the blood. When they are taking the blood they seat DS on me/dh and there's a video playing on a tv at his eye level. And we hold him, the person he's sitting on has a big book (like a where's Wally) to keep him occupied and when they decide which arm they'll take it out from, we shift the way we hold that book so it blocks the view - does that make sense?

Good luck.

MrsDeVere Wed 31-Jul-13 10:47:49

At this stage I think the best you can do is take each hour at a time.
Everything is new and confusing.
That is normal. It is ok.

You will take it in And you will understand it and you will become an expert.
But right now you have to do what helps you most.
You are doing brilliantly.
X

GraduallyGoingInsane Wed 31-Jul-13 11:15:47

I'm afraid I don't have anything constructive to offer, other than my thoughts and prayers. I'm lucky in that I don't have any experience of what you are going through, but I couldn't just read the post and not send my support.

If there's anything a stranger can do from afar, please let me know. I imagine Holland is pretty good for English books and DVDs but if you want any kids magazines (or grown up ones in case you have waiting to do) I am happy to send a parcel from England. Any favourite English sweets or treats too.

TwentyTinyToes Wed 31-Jul-13 14:36:55

Delurking to add my voice to the chorus, i can't begin to imagine what you are going through, but i must say you sound amazing and strong and Alex is lucky to have you in his corner. I hope that treatment is gentle on Alex (but tough on the cancer) and, well, just bearable really. Thinking about you. X

FriskyMare Wed 31-Jul-13 16:47:35

Hi Twunk, ALL is the type DD had all those years ago, the treatment is longer but not as intense as AML I seem to remember. We were in hospital for about 3 weeks to start with, then had day visits etc, so hopefully Alex will respond well and you can be home in a couple of weeks.
Don't be afraid to ask questions, I remember asking if my then 2.4yo would ever be able to have children because of the chemo (answer - no more unlikely than anyone else).
Has he had his Hickman line put in yet? It does make it a lot easier than having cannulas put in. Sorry, rambling a bit, hearing about Alex just takes me right back there. Be strong. You will get through it. xx

Twunk Wed 31-Jul-13 17:15:12

Takeaway yes we had the full distractions on - one of the child development people (who is impossibly pretty and nice) was talking, playing, distracting. We now have a reward chart and it helped with the oral medication earlier. He actually helped the nurse flush out his cannula!

Today we had positive news (which I'm cautious about) that the lymphocytes in his blood are down 50%. Hopefully that means it will respond to treatment. The (junior) doctor seemed pleased anyway.

My parents are in NL. DH has just gone to let them in to the house and will bring my mum back if she wants to come.

My period has started. A week early! That's what proper stress does to you. sad

Twunk Wed 31-Jul-13 17:17:33

goinginsane thank you so much. I have several people sending magazines and all sorts at the moment. I think we're going to be swamped!

Twunk Wed 31-Jul-13 17:21:04

Frisky the line (not sure what type yet) goes in on Day 15. I don't know why then particularly but I wasn't able to ask questions yesterday, just too overwhelmed after a terrible day with no sleep and a long wait for results. I think they're just trying to limit information in these first few days so we don't get overload.

MsGee Wed 31-Jul-13 17:52:13

Glad your folks are there, thinking of you xxx

takeaway2 Wed 31-Jul-13 20:52:01

Great to hear the lymphocytes are down 50%. It's good that its reacting so quickly.

For DS it was amazing that his first bloods post meds was back down to near normal. The info sheet and all of google told us that it would take 6-12 weeks. Fingers crossed they will start reducing his meds at our next consult in October ...

You try and get some rest. You need it... thanks

ChickenLickenSticken Wed 31-Jul-13 22:08:38

Such a lot to take in in such little time. You are doing a grand job by the sounds of it. Be sure to continue to let that steam off, I hope the release helps even a little.

Twunk Thu 01-Aug-13 11:29:28

The "proper doctor" confirmed the blood tests were good. She even smiled smile

Nocakeformeplease Thu 01-Aug-13 12:20:48

Fantastic news Twunk smile

MsGee Thu 01-Aug-13 13:24:51

That is great news! Small steps to beating this. Well done to you and the very strong and brave Alex xx

TabithaMcKitten Thu 01-Aug-13 15:37:22

Brilliant news about his bloods! And look how far you have come in just a few short days - you are learning the leukaemia lingo already smile

Do you know if you will be given an option of what central line he has? Have they given you any idea of what the treatment protocol entails yet?

Lots of love to you and your super little Alex xxx

Twunk Thu 01-Aug-13 18:02:43

No idea re central line! I've heard of a Hickman line (he was meant to have one at 4 days old but they failed to get it in) but that's all.

Twunk Thu 01-Aug-13 18:04:18

Oh man I wrote a whole big post that has gone... Maybe it will suddenly appear.

marriedinwhiteisback Thu 01-Aug-13 18:42:43

So pleased Twunk. Am on hols - this is one of the few threads I'm checking. Phew - have just welled up for you.

Trazzletoes Thu 01-Aug-13 19:00:30

Twunk a Hickman line is a type of central line - it mostly hangs outside the body. The other one they use here is a port which is, I think, completely internal.

Twunk Thu 01-Aug-13 20:06:28

Hello Trazzletoes and Marriedinwhite! Lying in my hospital bed and about to watch Sleb MChef as we have BBC1! smile

Alex had a lovely day with his brother and also grandparents.

The junior doctor wished she'd videoed the brothers earlier - they were so cute - she said they should be on YouTube. Alex is taking a lot of medicines and DS1 was encouraging him so sweetly - more to the point Alex was listening. Everyone thinks they're adorable if only they knew

Saw the consultant and I'm understanding the treatment a tiny bit better. Chemo starts Tuesday sad

MrsDeVere Thu 01-Aug-13 21:04:08

Portocath is sited under the skin. It's disadvantage is that you still access with a needle.
It's not as painful as a cannula but they can be tricky.

I think for this reason they prefer hickmans or the little ones.
They call them 'wrigglies' and Alex can have a little bag to put the wriggly bits (the tubes they use to administer drugs etc)

Glad he had a lovely day

Trazzletoes Thu 01-Aug-13 21:39:51

I think there are advantages and disadvantages to both really. I would have chosen a port for Joe so he could swim etc (though we haven't had time to even think about going swimming!!!) but he hates the Amla cream and plaster they put on so glad he ended up with a Hickman line after all. But have seen plenty of kids with both and as I said both have good points and bad points.

Starting chemo is scary but once its started, you're on the way - the body can attack the cancer. I know it's easy enough to say you should stay positive and desperately hard to do so, but you can get through this.

TabithaMcKitten Thu 01-Aug-13 21:42:53

We were given a choice which felt insane given that we were still so shocked that our supposedly healthy boy was so poorly. We spoke to another parent and chose a portacath in the end and I am very pleased we did to be honest. He has never been a big fan of having it accessed and had to be held down for it for many months, but it was all quickly forgotten and the advantages have far outweighed this. The risk of infection is lower than with a hickman line and when it isn't accessed he can be a 'normal' boy and go swimming and have baths and showers etc.

Trazzletoes Thu 01-Aug-13 21:55:45

Just to clarify: you can still bath with a Hickman line grin but it has to be held out the way and kept dry, either manually or we sling Joe's behind his back in his wiggly bag.

TabithaMcKitten Thu 01-Aug-13 22:06:21

Yes, sorry! I meant deep splashy baths that flood the bathroom (standard here!)

Twunk Thu 01-Aug-13 22:06:30

Alex (bless him) has acquired a bit of a reputation after needing 7 people to get blood from him on the first day. He has got tiny veins and it was bloody hard. DH came out needing a wine

So they might think the Hickman better...

I have to ask them a couple of things and I'm going to write them here as it will go in (I wrote them on a piece of paper and still forget) 1) why do they not treat boys for longer like they do in the UK? 2) my friend keeps going on about protecting his bones from osteoporosis - is this something for which I should have concern?

I still need a nice pretty notebook...

Twunk Thu 01-Aug-13 22:07:02

Thanks for the info by the way! I feel much clearer on it.

TabithaMcKitten Thu 01-Aug-13 22:07:19

I also meant to add that his treatment is for over three years and now he goes four weeks between needing to be accessed so it works out better here smile

Twunk Thu 01-Aug-13 22:10:10

The depth of bath is not the problem in our house, it's more the bath mate. Methinks Alex should go in first!

Twunk Thu 01-Aug-13 22:15:06

There's a bloody measles outbreak north of Utrecht, lots of very very religious people there (known as the Bible Belt) who do not vaccinate on principle. There's a Steiner bunch too - same issue. Today this is making me very angry. Thankfully DH and I had measles as children and DS1 had the MMR. Still it's worrying.

Trazzletoes Thu 01-Aug-13 22:27:26

Twunk welcome to the sudden world where you realise exactly how selfish people can be, unfortunately. Not specifically re: non-vaccination as people have reasons for that usually, but I get proper rage now at people who send their children out without waiting 48 hours post vomit/ diarrhoea. If your DS hasn't had chickenpox and other family members haven't either, you may want to look in to vaccination. DD was offered it on the. NHS here as neither she nor Joe had had it.

I appreciate these aren't imminent worries! But something to perhaps bear in mind for the future.

labtest Thu 01-Aug-13 22:28:57

We didnt get a choice and my daughter was given a portacath which I'm glad about. She has been able to go swimming throughout treatment and I've not had to worry about it being knocked or infected as much as I would with a Hickman. She is allergic to numbing creams but been fine having the port accessed without it.

IwishIwasmoreorganised Thu 01-Aug-13 22:38:03

Just come across this thread.

Alex sounds like a star and like a very loved little boy.

Twunk you sound like you're coping brilliantly on this dreadfully steep learning curve. Do you speak the local lingo or are the Drs able to converse on the technical bits in English?

Lots of love heading your way from South Wales.

Xx

takeaway2 Fri 02-Aug-13 07:21:22

It's amazingly selfish isn't it? DS got his illness after getting chicken pox - now we have to be acutely aware of pox or any other contagious disease like measles etc in the area. Of course we then bumped into some acquaintances who were out in town with a poxy baby in a buggy and got told in a whisper 'oh yes baby has the pox - best not come near...' angry

Hang in there. You and Alex are doing real well.

MrsDeVere Fri 02-Aug-13 10:48:21

lab we were nudged to a port and I have to be honest and say we had a lot if problems with it. We eventually switched and it was so much easier.
But there are pros and cons to both and the port did sound the better option at the time.

I guess it might be a moot point if the hospital tends towards one or the other smile

Twunk Fri 02-Aug-13 13:55:45

Yes MrsDeVere I think we might be "told" which one we're having.

Well I am getting more and more scared. The chemo next week...what can I expect? I know everyone reacts differently...but broadly..?

Twunk Fri 02-Aug-13 13:56:56

iwish my Dutch is truly rubbish blush

MrsDeVere Fri 02-Aug-13 16:29:01

We can all tell you how our children reacted and the likelihood is that You will get differing answers from us all smile

Anti sickness drugs are very good now and are usually given at the same time as the chemo.

As you little lad has been so poorly you might see an improvement in him quite quickly. Sometimes I think it's harder on the 'well' children who are suddenly given drugs that make them feel awful.

There are so many possible side affects its impossible to describe them and some kids get hardly any.

Tiredness, sickness, rashes and spikes in temperature are possibly the most common.

Twunk Fri 02-Aug-13 19:37:34

Thank you! Actually that's the best explanation I've had so far!

I'm worried about infections, I think mostly because the nurses are scaring me. I don't think they realise how clued-up I am.

I tell you what though, I've never known hospital notes read so thoroughly - everyone "new" I speak to seems to know everything I've said, which is a tad unnerving.

Actually Alex is very well now - so well in fact he's walking (he's a touch wobbly) and cycled round the rooftop car park.

Twunk Fri 02-Aug-13 19:40:39

Consultant came in smiling earlier - the cytogenetics are back and they're good - the type is very common in children of Alex's age and it responds well to treatment.

As my brother put it "I'm so glad the doctors are finding this tediously familiar". smile

MrsDeVere Fri 02-Aug-13 20:44:54

That's great news.
Really great smile
The 'infection' thing.....it is very important and is likely to become a rather time consuming part of your new life for a while.
There are strict protocols for children on treatment if they get a fever.
I won't go into detail because things may vary a bit.
But basically if Alex gets a temp above a certain level you will have to bring him into hospital for IV antibiotics (usually at least 3 days)

They start with first line anti bs and in the meantime they attempt to find the site of the infection.
Unless its a line infection it generally remains a mystery and you go home none the wiser smile

You will become almost psychic in your ability to spot the signs of an infection (as well as just being able to look at him and say 'hmmm I reckon your HB is low')

Some parents become very anxious about infection control, others a bit less so. I reckon their kids probably end up with about the same level of infection tbh.

But it can be soothing to clean and 'protect' our kids from germs. It at least feels proactive.

They may have explained neutrophil counts...that is your key.
The lower the count, the more prone to infection and you can generally predict when their counts will drop (due to treatment)

I hope that is not too much info for you, I don't want to overwhelm you. Tell me to shut up if you want grin

Twunk Sat 03-Aug-13 15:43:24

No that's great MrsDv. It's a scary new world. I'm sure I will get used to it but I'm scared of doing something wrong. I have hardly taken either child to the doctor, but as it turns out every time I have taken Alex he has ended up in hospital, so maybe I should learn to trust my judgment.

Not much going on here as it's the weekend. DS1 is playing up, my mum looks bored and Alex is quite well so now also bored. I am bored too. The days just drag. I prefer it to the scary days before though. No pleasing some people.

Mrs Dv I looked at your profile and read about your daughter. She was beautiful - you must be so proud of her. I love your favourite pic of her.

MrsDeVere Sat 03-Aug-13 16:00:02

The boredom! Oh yes.
Very hard with a little one.
It's another thing you will find a way round. Can you knit or crochet? It probably seems bonkers now but a portable hobby will be very useful in the weeks to come smile

Maybe a kind friend will supply Alex with an iPad ;)

Hopefully your little lad will spend most of his time at home and only come back to hospital for treatments.

Lots of kids get through like that.

Yes my Billie was beautiful. smile You are not to worry, teenagers react very differently to this disease than younger children.

If you want to ask me anything I will do my best to answer and there are lots of people here who know about ths stuff.
There is a dedicated thread when you are ready x

Twunk Sat 03-Aug-13 19:01:19

Oh we have iPads aplenty - but the youth of today just don't appreciate the wonderful technology we have. I had to manage with a Commodore 64. And I remember when all this was fields wink

I can almost knit. I am a little careless and keep ending up with longer rows than I started with.....

LoveSewingBee Sat 03-Aug-13 20:34:14

Maybe one way to deal with the boredom is to create some structure (this could equally apply to ds1 and dm ...).

Not sure if this works for you, but one way would be to create a list of possible activities and agree to pick one of the list every morning/afternoon or more or less often. Time to do nothing much is okay too.

Things we tend to have on our list:
- board games (4 in a row or proper board games)
- dvd
- audio cd
- drawing, this could be on the laptop like on several of the websites for kids
- computer game
- lego/play mobile
- reading a story
- jigsaw puzzle (could also be on website)
- playing with cars/trains/favourite toys
- making paper aircraft, little hats, boats etc.
- making a simple mosaic or animal mask or spaghetti/rice/pasta pictures or any other Mr Maker type project
- beads (if no beads are available, you could use pasta and string)
-ds1- making cupcakes or cookies or pizza
- ds1 walk to playground/park, skipping, ball games, bike, maybe that would distract him a little and tire him out a bit.

Not sure if this is of any help at all.

Twunk Sat 03-Aug-13 20:51:37

Actually that is jolly helpful sewingbee - I guess I'd got such in the habit of having a poorly child I've forgotten how to actually do anything else with him. Also, I've been shattered.

Actually today we played with playdoh, which was therapeutic! MsGee has sent a book of things to do, I shall pick one in the morning.

takeaway2 Sat 03-Aug-13 21:07:03

The structure at GOSH saved us from going mad actually. With the 'nursery' split into am and pm sessions so you know there's crafts in the am and say cooking in the pm. And whatever in between (eg blood tests, heart echo etcetc).

We were also lucky in that we could move freely so dh found a park found the corner and frequented that. Even made it to the natural history museum one time! Ate plenty of yo sushi and waitrose ready meals (waitrose the nearest supermarket)!!

Twunk Sat 03-Aug-13 21:22:15

Are you trying to make me jealous?! I miss Waitrose and I'd kill for sushi. wink

takeaway2 Sat 03-Aug-13 21:45:00

Lol. That was about the only 'perk' about being stuck in that part of central London! wink

Trazzletoes Sun 04-Aug-13 09:51:09

Re: the infections... Please don't worry too much. Yes it is scary but for the most part there's nothing you can do about them. The vast majority of any infections he will get will be from bugs he already carries inside him - in his gut or whatever. My Joe is a carrier of c diff (its one of those bugs that's characterised as a superbug like MRSA though I don't understand quite why as an infection is controllable - perhaps because they can't get rid of it completely...) anyway, he's had it 4 times! I think on our ward they average identifying a specific infection in approximately 1 in 5 fevers so you may often not find out what's happening.

We try to take precautions by not taking Joe to soft play or to farms etc but there are plenty of parents that do. Plus all being well Joe's treatment is just over a year.

There's not much point me telling you how he coped with chemo as his drugs/ quantity etc will be totally different.

I hope you are all bearing up ok.

Twunk Sun 04-Aug-13 13:25:50

Yes I must be calm! I will not turn into a mad crazy germ-defeating harridan!

Just seen the doctor and she has put my mind at rest a bit.

lurkerspeaks Sun 04-Aug-13 20:57:28

Seriously think about crochet or needle point. Portable, therapeutic and time consuming.

You are going to spend a lot of time incarcerated.

Thoughts from the frozen north (which is actually sunny today).

MrsDeVere Sun 04-Aug-13 21:12:26

Cross stitch is good too. Very easy and you can do it even if your concentration isn't brilliant.

If you are not a fan of kitties and teddies you can check out my fave
www.subversivecrossstitch.com/

grin

Twunk Sun 04-Aug-13 21:37:17

Subversive cross stitch!! Now that's right down my alley!

I have put a call out for someone to teach me crochet - am useless at learning things from books or YouTube.

DH was very glum earlier, as am I. We identified it as a lack of adrenaline - we've been living off it for over a week and now it has slumped, so have we. I had trouble keeping my eyes open today.

Alex has been a joy though. His appetite is kicking in now, though not out of hand. He has puffed up a bit, nearly all round his middle. He feels much more substantial.

TheSecondComing Sun 04-Aug-13 21:52:55

Message withdrawn at poster's request.

Nocakeformeplease Sun 04-Aug-13 22:03:20

Sorry to hear you are both struggling today. I think you are probably right about the adrenaline slump.

I'm glad Alex is so all in himself though and that his appetite is picking up.

Thinking of you all x

Twunk Mon 05-Aug-13 09:58:46

Thanks all.

He's really struggling to walk but bless him he's trying. A few wobbly steps here and there.

The junior doctor came in this morning and said everyone is in love with my sons as they are so cute together. I must admit I've given way to maternal pride. smile

The café in the lobby does fresh orange juice and it's delicious. Plus I get to ask for "sinaasappelsap" which is one of my favourite words grin.

tinypumpkin Mon 05-Aug-13 13:05:49

Popping in to see how you are all doing. How lovely that everyone is in love with your sons, they both sound amazing.

Glad too that the doctors are finding this tediously familiar, that is all good smile

Keeping those positive vibes coming x

Twunk Tue 06-Aug-13 08:07:47

Today is Alex's first (and second) chemo sad. At the end of the day we may be able to go home smile.

LoveSewingBee Tue 06-Aug-13 08:39:49

Hope all goes as well as possible today and that Alex is able to cope well with it. How will they give the chemo to him?

Also very much hope he can go home tonight.

takeaway2 Tue 06-Aug-13 09:23:12

Fingers crossed everything goes well today.... big hugs xx

ajandjjmum Tue 06-Aug-13 10:53:35

Thinking of Alex today - and fingers crossed that you can 'escape' tonight.

Trazzletoes Tue 06-Aug-13 11:03:34

Hope it all goes smoothly and you manage to get home.

Twunk Tue 06-Aug-13 13:42:26

It's not going smoothly - an anaesthetist was required to find a vein (after several traumatic attempts in the department) and we're only onto drug one right now.

They've not managed to get blood out either.

So looks unlikely we will escape today. sad

Kveta Tue 06-Aug-13 14:09:22

sad sounds hard Twunk

hope you escape soon

Twunk Tue 06-Aug-13 14:55:10

I'm digging a tunnel...

MrsDeVere Tue 06-Aug-13 15:26:01

Sorry its not been as smooth as it should have been twunk sad

I made a decision right at the beginning of DD's treatment that I would dig in and not anticipate going home until we knew for sure. So many blips happen it can cause a real crash in spirits if you think you are going be set free and you have to stay in an extra day or two.

I know you want to go desperately and I hope you get home really soon.

Twunk Tue 06-Aug-13 19:55:36

WE'RE HOME!!!!

I was beginning to get used to the idea of being incarcerated for another day but they said we could go after the chemo.

Alex is doing well and seems quite on form.

I've found out we have the Portothingy fitted next week (not a Hickman line).

Back Friday for second dose of chemo. Go in Tuesday for line, lumbar puncture and biopsy.

DH is just putting the boys to bed, because he does that normally. I'm a bit overwhelmed and everything is a bit loud and busy (mum and dad are here) but it's good to be back.

cher31 Tue 06-Aug-13 20:04:03

Glad to see you are home and all doing so well. I cannot begin to imagine what you are going through but you are in my thoughts. Hope you manage to get some rest tonight.

Nocakeformeplease Tue 06-Aug-13 21:40:08

Lovely to hear that your back home and that Alex is in good spirits. How far are you from the hospital?

DS has a port-a-cath (we weren't given a choice). He does still get a bit upset when it is accessed but is getting more accepting of it week by week. The nice thing is he can have a bath with DD and we even went swimming on Friday as his blood counts were good.

I hope you have a nice couple of days at home before the second dose on Friday x

MrsDeVere Tue 06-Aug-13 21:47:00

I am SO glad you are home.
I bet it feels weird.

x

MrsDeVere Tue 06-Aug-13 21:47:59

Really glad you got to take your DS swimming nocake.
A bit of nice, normality can be so fortifying smile

Twunk Tue 06-Aug-13 21:51:12

It is weird yes. But I was worried it was going to be weirder than it is.

I've had a gin and tonic and a glass of white wine and a helping of fish pie.

smile

Twunk Tue 06-Aug-13 21:52:32

We're 20 minutes from the hospital. Even less in the middle of the night. So glad we didn't opt for Amsterdam as more like 45 minutes.

CoteDAzur Tue 06-Aug-13 21:57:49

Welcome home, Twunk & Alex flowers

Nocakeformeplease Tue 06-Aug-13 22:20:48

Thanks MrsDeVere - it was just so lovely to see him behaving like every other care free 4 year old for a bit smile.

I have to be honest that when we first got home after two weeks in hospital I actually felt a bit odd, almost a bit flat. I think I expected to feel over the moon but when it came to it i felt a bit nervous about leaving the ''safe' environment of the hospital where they checked on him every 4 hours. It soon passed though and I've even managed to stop taking his temperature every 3 minutes grin

I'm glad you're not too far, I think that really does make a difference.

MrsDeVere Wed 07-Aug-13 08:08:08

I threw away the bloody digi thermometre after a week. Flipping thing was always telling me different things!

I used to beg a stash of the tempadots from the nurses and use them instead (disposable thermometres).

I think digi ones have probably improved since then though :D

Nocakeformeplease Wed 07-Aug-13 09:58:14

Not much! we have three now and invariably they all give different readings. The most recent one was a Braun one recommended by the hospital. It is a bit more reliable but still often gives different readings minutes apart.

MrsDeVere Wed 07-Aug-13 15:03:32

Thats the problem, those few tiny degrees can make the difference between having to take them into hospital or keep them at home.

Can you get some disposables? Once you learn to read them they are really simple.

Nocakeformeplease Wed 07-Aug-13 16:20:24

They use the ear thermometer at our local hospital but I'm sure they must have some disposable ones - will ask then next time we're there.

Hope Alex is doing okay and you're enjoying being at home twunk - it must be lovely for DS1 too.

Twunk Wed 07-Aug-13 22:45:03

I have a "brother Max" thermometer which actually seems ok. Quite impressed with it so far - it's been right when he's been checked at the doctor subsequently.

Well Alex has had no noticeable reaction to the chemo. He's sleeping, eating, playing - just a bit tired.

Fecking pharmacy had not had the fecking fax from the fecking hospital so I was having to sort that out earlier. Hospital don't give the drugs themselves but they had given a couple of doses. I got very annoyed and quite forceful (for me) with the ward as the pharmacy did not have prednisone, or either antib. We sorted it out and I got things delivered to my house in time. But not a fun start to things.angry

Mum threw a wobbly earlier. She's great but she does get oversensitive and it's a bit exhausting when you're a bit of a state yourself. Both me and dad said (separately) "this is not about YOU!". Dad never says stuff like that.

She did apologise. We kissed and made up but really...haven't I enough to cope with?

Twunk Wed 07-Aug-13 22:49:05

Nocake I was terrified of leaving the hospital. It was safe, and I didn't have to face my house (my "old life") with all this fear and anxiety. I cried to the nurse that I didn't want to see my neighbours and I don't want pity. I know it will become obvious when Alex loses his hair, but I will cross that bridge when I come to it.

MrsDeVere Wed 07-Aug-13 22:59:19

Twunk you will get used to being forceful. I shocked myself sometimes blush

Yep, I had similar with my mum. I had to get my sister to have a word. She was phoning every single day and asking for a complete run down of symptoms, temps, bloods, everything. I really didn't want to talk about it all the time!

Best to sort it early on. You and your little family are the most important and Alex is going to take priority. Other people have to cope with their own feelings and not expect you to support them. It sounds harsh but its about you getting through this.

Flatasawitchestit Wed 07-Aug-13 23:06:54

Crikey, I saw this thread last week and meant to come back to it so added it to my watch list.

Sending you my thoughts and best wishes thanks

Nocakeformeplease Wed 07-Aug-13 23:14:02

Sorry to hear about your mum - I'm sure she didn't mean to, but the last thing you need is anyone adding to your problems at the moment. It is all too bloody draining without having to tread on eggshells over other people's feelings. Hopefully she will think twice next time.

I remember saying exactly the same thing- that I didnt want everyone pitying me. For a good few weeks I just couldnt face/didnt want to see anyone other than very close family and friends. I actually felt quite introverted which is not like me - I think I just needed time to process it myself before I dealt with anyone else. Even now i cry every time I see someone for the first time since finding out - I went to football on Saturday and the poor men in the pub didn't know quite what to do when I started blubbing!

Actually though, in the main people have been wonderful. I hope you find the same x

Twunk Wed 07-Aug-13 23:17:12

Message withdrawn at poster's request.

Twunk Wed 07-Aug-13 23:17:43

Thanks flat (great username)

Twunk Wed 07-Aug-13 23:21:41

Nocake poor man in the pub! wink

I feel like I should be wearing a sign. I feel irretrievably changed...a bit like when I got married, or had DS1. I've left behind the me I was.

Maybe that's a tad melodramatic, but maybe not.

Nocakeformeplease Thu 08-Aug-13 20:42:04

It is probably meant with the best intentions, but I would find it intrusive too. Most of ,y friends have made appoint of saying thy don't expect a response and I appreciate that. I always reply but sometimes I cannot face doing so immediately. As for going on about her illnesses, you are def not being unreasonable. Of course she is still going to get fed up about things, but it is insensitive to bend your er about them at the moment. If it makes ou feel any better my step mum rang the other day to see how DS is and then spent the rest of the call telling me how she is going though hell with her mobile phone insurance as thy wont pay out of a new phone.... If only.....

How are you feeling today? x

MrsDeVere Thu 08-Aug-13 21:19:02

Its absolutely fine NOT to answer texts. In fact if anyone comments just tell them that you have to have your phone switched off on the ward.

I used to get hundreds of text but many of them were prefixed with 'you don't have to answer this but I was just......'. I really appreciated reading them but not having to reply.

You have to put yourself first. You now have a full time job, being Alex's carer (as well as his mum of course) and that is going to take up a lot of your time and energy.

You are not being melodramatic. This WILL change you. You are starting a new kind of life.

I hope Alex is ok and YOU look after yourself.

IwishIwasmoreorganised Thu 08-Aug-13 21:30:37

You're getting some good advice here Twunk, though it's dreadful that so many on here are able to talk about their first hand experiences.

I know what you mean about feeling irretrievably changed - I can relate to that after having ds1, and especially when I retuned to work. This is another monumental event in your life and that of all of your family members. It is bound to have a profound and lasting effect on you.

Still thinking of you.

Xx

takeaway2 Thu 08-Aug-13 21:39:23

Just wanted to add that it's totally ok not to answer text messages or fb messages. Having said that a couple of 'friends' have distanced themselves and it maybe because we didn't reply... Or we haven't had time to visit/meet up.

Dh's attitude is - well it goes both ways - if we don't visit they can always visit us. And if they are real friends they'll totally get it. Thankfully most of our friends have shown that they are real. And those who have buggered off.... Well they aren't missed. grin

Twunk Thu 08-Aug-13 23:21:26

Thank you! You start to doubt yourself.

Back to the hospital tomorrow, for chemo session 2 - Asparaginase (which is near impossible for me to say in Dutch).

Today has been good, the boys went to a playground then

Twunk Thu 08-Aug-13 23:22:19

...then we went to McDonald's. lots of hand-cleaning etc but I was otherwise calm.

Twunk Fri 09-Aug-13 11:58:57

Argh!! Chemo didn't happen because even the anaesthetist couldn't get a needle in this time. She said there was only one good site left and she didn't want to risk it. So my poor steroid-fueled boy is now nil by mouth until they can knock him out to do it. sad

MrsDeVere Fri 09-Aug-13 14:50:39

Oh dear sad

I hope they can get him done soon so he can have something to eat x

Twunk Fri 09-Aug-13 16:20:39

All done.

His blasts from day 8 were 0% smilesmilesmilesmile

But just as I was celebrating that news the nurse came back and said he needed a transfusion (funnily enough MrsDeVere I did think "hmmmmm he's looking a bit pale" this morning).

So we're here a while.

Nocakeformeplease Fri 09-Aug-13 22:20:13

That is great news smile.

Shame you cant go home now but I hope the transfusion perks Alex up x

Twunk Sat 10-Aug-13 09:27:14

We got home at about 9.30 last night - so a pretty long day.

2 things I've learned

1) always take hospital bag even for a short visit
2) put phone charger in said bag

We all slept very well smile and Alex is walking so much more. So he was just knackered really.

MsGee Sat 10-Aug-13 17:56:54

Just catching up on things.

You sound so very strong, I know it probably doesn't feel that way but you really are - I hope that doesn't sound patronising.

People (myself included) will ask how you all are but anyone worth their salt will understand if you ignore questions or communication in general - you need to focus on the important shit.

I have no idea what you are going through bit it's definitely not melodramatic to feel you've changed. In my own (non comparable) experiences I went through a period where I felt very detached from people - as if the world was divided into those who had experienced the same thing and the rest. I did feel angry too at the rest of the worlds lack of understanding. I dont know if that is helpful to share but just wanted youto know you are not being dramatic.

twojumpingbeans Sat 10-Aug-13 18:03:48

Just read this thread and wanted to let you know how much something you wrote resonated with me. My DD2 doesn't have leukaemia but has a life limiting genetic disease, she's almost 18 months old now. I just welled up when I read how you said you had irrevocably changed - I just completely understand. It's like you have to say goodbye to the person you were and become someone you never thought you could be. I saw somewhere once that you never know how strong you are until being strong is the only choice you have.

Anyway, thank you for putting into words what I have been feeling for so long. Truly hope that Alex continues to do well.. Thoughts are with you and all that! Know I shouldn't but wanted to send a (hug) so I have! :-)

tinypumpkin Sat 10-Aug-13 20:41:10

A bit slow in catching up but I understand about being changed forever. Different circumstances (this is not about me!) but what you said makes perfect sense.

Catching up here too and sending much love to you all. x

Twunk Sun 11-Aug-13 19:34:37

((((Twojumpingbeans)))) I'm sorry you know how it feels.

We had a lovely time today - been to the Euromast in Rotterdam and it was nice to get out the house.

I'm obsessing over cutting Alex's hair, it's pretty long and I keep thinking it ought to be short before it falls out. He doesn't want me to sad.

It doesn't matter really, I can't bear it to come out and really it just doesn't matter.

MrsDeVere Sun 11-Aug-13 20:06:01

Glad you had a good day twunk

Keep a bag packed or at least have all the things you want kept in one place. I.e. always put your charger, any tablets (pain killers because you have to get them prescribed if you have a headache and that can take blumming ages!), change, book etc in a drawer/box.

That way you can get a bag together in five minutes. Three days worth of stuff is a good amount. Anti b's for an infection tend to be at least three days worth (unless things have changed).

I know people thought I had weird priorities, I always had my make-up, skin care, radio etc etc with me but these things make such a lot of difference when you are stuck in a hospital room. My personal DAB radio was a life saver but I reckon technology has probably moved on a fair bit since then grin

Be prepared and that way you can 'forget' about it. Hopefully you won't need your hospital bag between treatments though smile

Nocakeformeplease Sun 11-Aug-13 21:12:33

I'm so glad you had a lovely day.

I think your feelings about Alex's hair are very natural. Of course in the scheme of things it doesn't matter but it upsetting because of what it symbolises I think. I found it very upsetting when it first started but I honestly got over it very quickly though. He still has a very very fine layer of fluffy hair - he looks like a little chick! DD (15 months) loves rubbing his head! We did chose to get it cut very short when it started falling out but then it was already pretty short to begin with. The strange thing is that although he has noticed it, he has never questioned it. I think he thinks she just cut it very short the last time - it's a wonder he doesn't want to sue! None of his little friends have commented on it either which also surprised me.

Very good advice from MrsDeVere (meant to do this after the first admission, didn't realise we would be back in within 12 hours so hadn't got round to it!). It just takes the pressure off when you're rushing around trying to get everything together. I have the basics in the bag and then a list in the bag of last minute bits I need to grab (charger, DS rabbit etc). And touch wood, since I packed it, we haven't needed it!

Trazzletoes Sun 11-Aug-13 22:19:06

I third the pre-packed bag - it's also a good idea to take it with you to the hospital when you go in for seemingly random appointments when there's no reason to keep you in - you never know when he might have crazy potassium levels or something and need to be kept in.

Twunk Mon 12-Aug-13 08:56:49

Noted. Bag is packed! smile

Alex is so well he doesn't think he's ill. I feel terrible having to remind him that he can't feel it because it is in his bones sad. Hospital tomorrow for the portacath and more chemo. My dad arrives tomorrow too.

Twunk Mon 12-Aug-13 11:19:28

I've cut his hair - actually he looks adorable smile

Twunk Tue 13-Aug-13 18:55:38

Horrible day. Surgery was predictably late, then when he came out he was screaming and crying. I had to get into the bed with him to calm him down as he had to lie flat for the chemo drugs in his spine.

They were then very worried about his low heart rate and an arrhythmia. So, trying to cope with all these people coming to look at him, take X-rays etc whilst lying down and not 100% understanding their Dutch was no fun at all.

He was very distressed too. So I was trying to calm him down too.

Eventually they called the cardiologist who said he wasn't worried at all and so we went back to the ward! 3 hours later...!

Poor love was starving (hadn't eaten since he went to bed last night).

Horrible.

LoveSewingBee Tue 13-Aug-13 20:02:13

sad Sorry to hear that you have both had such a hard day. Very much hope he feels a bit better now and is able to go home soon.

takeaway2 Tue 13-Aug-13 20:27:51

Im so sorry you and Alex had such a bad time today. Will you have long to stay in this time? thanks Big hugs. Xx

QOD Tue 13-Aug-13 20:28:14

Ack poor little fella. Horrible day, onwards and upwards x

Nocakeformeplease Tue 13-Aug-13 20:44:26

I'm so sorry Twunk - it's just shit isn't it sad. The only consolation is that he is unlikely to remember any of this in years to come....I know that probably doesn't comfort you much at the moment. I hope Alex is feeling a bit better now x

Twunk Tue 13-Aug-13 21:41:03

Thanks all, he's finally asleep! I am looking forward to going home tomorrow. I know he won't remember it nocake but I'm not sure I will be so lucky <plans hypnosis>.

Nocakeformeplease Tue 13-Aug-13 21:51:26

I know Twunk - DS's consultant said pretty much the same thing x

MrsDeVere Tue 13-Aug-13 22:21:06

I'm sorry sad
I used to get them to give DD pain relief before she came round. She wold often wake up distressed. Its horrible.

She wasn't always in severe pain but even discomfort can be magnified in this sort of situation. So I learnt that it was better to give analgesia prophylacticly iyswim x

Quangle Tue 13-Aug-13 22:22:41

Twunk, been offline for ten days (Wales on holiday but might as well have been Mars for all the phone reception I had!) and was thinking of Alex and you. Glad to hear that the drs are happy with how Alex is doing and that he is responding well despite horrible day today. I do hope tomorrow is better and the chemo is doing its thing.

Twunk Wed 14-Aug-13 11:45:00

Quangle welcome back from Mars!

MrsDeVere next time he goes to theatre I will ask the anaesthetist to give pain relief before he wakes, thank you.

Nocake I will remember everything I think. I had a hard time when he was born...but what did I know? This is taking it out of me like I never thought possible.

Good news though! Just as I was reaching a real low the doctors came in to tell me that his initial response to treatment has been "excellent".

I have to admit I cried. I didn't know how worried I was until they told me they were really pleased. grin

Ebb Wed 14-Aug-13 11:59:32

I've only just found this thread. I'm so glad to hear that his initial response to treatment has been excellent. You sound like you're being incredibly strong. Thinking of you and sending 'get well vibes' to Alex.

Nocakeformeplease Wed 14-Aug-13 22:20:04

Wonderful news that his initial response is excellent - I'm not surprised you cried smile

Twunk Wed 14-Aug-13 23:12:37

Thank you Ebb - when you have a child with cancer you very quickly realise your life is no longer your own. I cannot make simple decisions about him without considering the impact. But then it also keeps you going because there is so much to do! Medicine 3 or 4 times a day (at least), hospital visits, keeping friends and family informed, then just living.

It was nice to shed happy tears today, especially after yesterday was such pants.

takeaway2 Thu 15-Aug-13 07:24:52

Wonderful news about Alex!!!! Woo hoo! What are the next steps then?

We had our usual blood tests this week and meet with the consultant. He was v happy with that progress but DS for some reason decided to faint. Twice. At the hospital. Never ever happened before. Obviously freaked us out. Dr did all that tests and said he thought he was just plain exhausted (very possible as he's not really had a rest since the summer hols started...). He's been at camp, because we both work full time.

Anyway we go on holiday tomorrow and I hope this means the start of some relax time... We are doing things like legoland etcetc but hopefully because its all fun stuff and with us it'll be fun and not too exhausting.

Whoops sorry to go on about me. I just wanted to say how very glad I am to see how well Alex is doing! smile

Twunk Thu 15-Aug-13 11:57:48

Oh goodness takeaway that would have scared the bejesus out of me too!

Pleased test results were good. Enjoy your time off. It sounds lovely.

We were supposed to be going on holiday next week - just down to my sister's in the south west of France. We were seeing DS1's best friend on the way down (they've moved to near Limoges for a year). Such a shame, still - having a child with cancer means people throw holidays at you, though none of them offer 2 weeks in the Caribbean....wink

Twunk Thu 15-Aug-13 12:02:01

Next steps are more chemo then another bone marrow biopsy on day 33. Then we have lots more chemo in month 2 before it is completely decided whether he is standard, medium or high risk. That's "induction" finished.

Then comes "delayed intensification". shock sad

takeaway2 Thu 15-Aug-13 15:10:16

milestones - it's milestones. you just need to get to the little milestones... big hugs

We've hit a year on drugs - consultant said another year, but will concede to what GOSH suggests so my next milestone is getting to October and going to London. I'm hoping they'll wean him off it....! smile

I'm not around for the next two weeks and will prob not get to go on MN or any internet... but fingers tightly crossed for you, Alex and the family.. xx

MrsDeVere Sun 18-Aug-13 21:14:27

How was your weekend twunk?

Twunk Sun 18-Aug-13 22:38:54

I've been very down. I know why, but that doesn't help. Today as been particularly bad. Alex is fussing for food every 20 seconds, I'm exhausted and aimless. I want to do stuff, but even making a sandwich seems like an impossible task.

My mum arrives tomorrow, and I'm so pleased about that.

MrsDeVere Mon 19-Aug-13 08:56:03

You poor love sad

You are going to have days like this. You need them occasionally. Its bloody hard work being upbeat all the time!

I hope your mum coming makes things a bit easier for you.

Its such early days for you. You will get used to this new life and find a way through it.

It is REALLY, REALLY important that you take care of yourself. Eat well when you can (in hospital it can get tricky), take supplements, find a hobby that calms you, try and book in the occasional treat like a manicure (if that is your sort of thing).

There is no way of making this easy. I wish there was but you will cope and you will get through it. x

Quangle Mon 19-Aug-13 11:30:02

Thoughts are with you Twunk. This must be so unimaginably hard - three weeks ago we were discussing what might have been post viral symptoms and you've been plunged into this other world that you didn't ever expect to be in. I can't imagine what it must be like. But I can understand why you might feel exhausted and aimless - everything that your mind is having to process at the moment means a sandwich is just too big an undertaking. Hope your mum arriving helps. x

ajandjjmum Mon 19-Aug-13 13:34:14

So glad your Mum will be with you today - you'll have someone to take care of you too.

Twunk Mon 19-Aug-13 16:12:55

Thanks all. Mum is here and it's so lovely to see her. Alex has been cheery and has been playing (and eating!).

I'm doing a little better today but yes it's hard to stay positive. I am just so tired I could sleep all day, and then I can sleep at night too.

Twunk Mon 19-Aug-13 21:49:54

Message withdrawn at poster's request.

Twunk Mon 19-Aug-13 21:50:27

He's back by the way - he'd just gone upstairs

ajandjjmum Mon 19-Aug-13 22:07:18

Trouble is Twunk, men often seem to struggle to talk to others about anything that's upsetting this - and his worry about Alex is clearly a big upset. Maybe he's just allowing himself to be down, now that he knows your Mum is there to support you? Does he have any close friends you could talk to, and ask them to meet up with him for a drink, or something? He might feel that he doesn't want to open up to you too much about his worries - as they're your worries too.

As you are, he needs to draw on every bit of support available.

Glad Alex has been bright today. smile

Twunk Mon 19-Aug-13 22:26:58

Message withdrawn at poster's request.

Nocakeformeplease Mon 19-Aug-13 23:13:21

Message withdrawn at poster's request.

LoveSewingBee Mon 19-Aug-13 23:19:08

Message withdrawn at poster's request.

I am so sorry you and your son are struggling with this.

I am thinking of you and hope the rest of the treatment goes just as well as it has so far. smile

He sounds like a lovely little character!

Twunk Tue 20-Aug-13 09:02:53

Message withdrawn at poster's request.

LoveSewingBee Tue 20-Aug-13 22:39:04

Hope you get a better night sleep today! Bet your sons had a wonderful night though, nothing beats sleeping in mummy's bed I sometimes think ..

Ebb Wed 21-Aug-13 13:46:15

How long is your Mum staying? Is there anyway you could afford a nanny/mothers help to give you practical support when your Mum leaves? I can't begin to understand how stressful it must be for all of you ( although my DS,5yrs, has a heart condition but hasn't required any treatment - yet. ) I hope Alex continues to improve and that DH gets some support from his boss and best friend. He may open up more to his his friend. I can imagine him not wanting to stress you with all his worries about the situation on top of your own thoughts and feelings if that makes sense?

Twunk Wed 21-Aug-13 15:11:35

We're going to get a cleaner, just once a week. I think we'll cope otherwise but I think there'll be a lot of favours to be returned!

Mum is here until the end of the week then dad comes Tuesday. That takes us to the end of the summer holidays.

I had some good news yesterday - spoke to the (really very kind) consultant - she said that his bone marrow biopsy was really very good - 0% blasts visible under a microscope gringringringringrin

We won't know his "risk" level until 12 weeks into treatment, but high-risk isn't really at all likely now.

I slept much better last night, but actually felt better yesterday than I do today. Perhaps I am sleeping too much.

MrsDeVere Wed 21-Aug-13 15:18:23

Fingers crossed he gets to go on regimen a (if they still call it that).

cleaner is a great idea although I pity the cleaner who would have had to put up with me back then! grin

Quangle Wed 21-Aug-13 16:17:13

Oh gosh that's great about the blasts (although I have no idea what it means!)

I know it's a long, horrible road but it sounds like you are in good hands and have lots of love around you.

ChickenLickenSticken Wed 21-Aug-13 19:45:52

Sounds like good news.

I'm envious of you and your DH is separate beds as my DH is a loudly snoring fidget

Twunk Thu 22-Aug-13 19:59:42

Yes chicken it's the secret of our happy marriage only it's me who snores

Twunk Thu 22-Aug-13 20:02:18

Quangle briefly, the blasts are the cancerous cells - they are immature white blood cells that take up all the room in the room in the bone marrow, leaving no space for it to produce all the other blood cells you need. And it hurts too because they don't stop multiplying and it becomes horribly crowded.

InSpaceNooneCanHearYouScream Fri 23-Aug-13 21:45:47

Hello Twunk, hope you don't mind me commenting, but I just wanted to say please ask the doctor for help coping if you need it. I recently started anti-depressants after years of horrible anxiety about one of my children, and they have helped me enormously and I now feel much happier and able to cope. Good luck

Twunk Mon 26-Aug-13 15:17:08

I have PMT now - can really feel it. I am even more tired than I normally am at the moment, and even more snappy.

Today is one month since we were given the initial diagnosis. It's been such a terrifying month, and I still feel like we are living under siege. But I am getting used to the "new normal" and also thinking ahead a little bit.

DS1 starts back at school on Monday. I've told a few parents (it is a small town and you bump into people) to make life a bit easier. Hopefully the school will read my note before Monday - as Alex was supposed to be starting at it will break my heart if his chair is there. sad

Twunk Mon 26-Aug-13 15:19:22

Space thank you. I've spoken to the dr recently as she phoned to see how we are. I'm on 10mg of paroxetine anyway, so we'll see how it goes and if I need more.

InSpaceNooneCanHearYouScream Mon 26-Aug-13 17:54:05

Oh good- my starting dose didn't really help me so my doctor doubled it ( 40mg of fluoxetine) which has made all the difference.

ShiftyFades Tue 27-Aug-13 05:42:55

Thinking of you Twunks, you are coping brilliantly, Alex is lucky to have you x

Twunk Fri 30-Aug-13 12:05:22

We had another GA at the hospital yesterday but he was just a day case - he had his first bone marrow taken for an "MRD" test which will determine what course of treatment he has after 21 weeks. I won't get the results until the second one at 12 weeks.

The next phase of treatment starts Monday - I'm to be at the hospital 8am which means missing taking DS1 to school on the first day back sad

Depending on his blood tests he will or won't get this treatment, which means I may also miss picking up DS1 too.

Twunk Mon 02-Sep-13 14:24:15

I've had a few messages with personal details removed, in case anyone was wondering.

takeaway2 Mon 02-Sep-13 19:03:33

Hi Twunk
Been away on holiday but so pleased the drs sound positive.

It's difficult when you have another child and you feel torn to want to do things for them too. Our family split up briefly when DS was in gosh as we don't live in London. So dd was rather confused as to where I was (or perhaps more importantly where her boob was!!!) grin.

Hang in there. Do you get respite time? X

Twunk Mon 02-Sep-13 20:27:20

Hi takeaway! Did you have a good holiday? How is DS?

Today was the long day but at least they could start treatment. Woke at 6, left at 7, hospital by 8 and straight to lab for blood test. Then he had a drip that lasted from 10 until 7. I had a half hour break when one of the specialist play workers came and spent some time with him.

DH arrived 6.30pm. He left to get DS1 in the bath and Alex and I finally got home 8.30 zzzzzz

DH picked up the new (2nd hand) car. It's dull but it will do the job.

Twunk Mon 02-Sep-13 20:28:48

No respite care. But lots of support.

peachypips Mon 02-Sep-13 20:40:02

Hi- just seen this thread for the first time. Sorry this has happened to you but so encouraging about the 'blasts'.

Sending you love and prayers from the Pips household.

takeaway2 Mon 02-Sep-13 20:49:04

Hi Twunk!

Holiday was good. We didn't go away last year as we were still panicking and on medication with the team not really clear what he really had - so I really feel for you. Didn't want to travel too far in case something happened and was too exhausted to do anything else beyond hospital, bloods and everything! He started reception last year so we of course, missed all the meetings, buying of uniforms etc but it was good to have a diagnosis before school started...

DS is good. Making the most of his last day of holiday before school starts on Wednesday. Dr said we can do blood tests every 6 weeks now - woo hoo!! Small steps (it was weekly then monthly and now 6 weeks!!). Dr did say we can do it in 8 weeks but I thought we ought to take things slower!

Having support is great. We had a good network of friends. Relatives don't live near (6hr drive or 13hr flight!) so we had to rely on our network of friends. Thankfully alot of them are also 'not from around here' so they get the friends-almost like family sort of relationship...!

Twunk Tue 03-Sep-13 17:03:18

We have no relatives near. My sister is in the SW of France and everyone else is in England. Oh except the PILs who are in Japan!

My parents have been brilliant though, and I'm looking forward to seeing my sister in a couple of weeks.

We've had a good day. Firstly, Alex's last steroid dose. smilesmilesmilesmile Secondly we went out for a nice walk and a drink. Thirdly we baked (and for the first time ever I was calm and let Alex help). Plus Alex was in a good mood! First time he's been fairly cheerful for about 3 weeks.

Quangle Wed 04-Sep-13 23:50:35

Twunk, just checking in and waving really. Amazing how the tiny things make us feel better (baking a cake, having a nice walk). The treatment days sound long and exhausting but I'm glad you are getting to do other things too occasionally. Hope Alex is still in a good mood!

Twunk Thu 05-Sep-13 23:26:56

Today was less good - he's tired and fed up. But he enjoyed McDonald's and an ice cream smile

LoveSewingBee Fri 06-Sep-13 20:07:45

Hope you all had a better day today.

If your boys like steam trains, in the weekend of 21 and 22 September there will be lots of steam trains at the Spoorwegmuseum in Utrecht. Also, during half term (19 to 27 October) there is a Chuggington event at the Spoorweg museum. However, also without these special events it may be a nice place to visit. There are lots of platforms but from memory there is good access with lifts.

LoveSewingBee Fri 06-Sep-13 20:09:04

At the top right corner of the website of het spoorwegmuseum Utrecht you can switch from Dutch to English.

Twunk Sat 07-Sep-13 14:47:10

We love the spoorwegmuseum! Unfortunately I've let our museumkaarten expire but I think the boys would LOVE chuggington. I am a bit worried about crowds...I wonder if they would let us in a bit early? Hmmm.

Alex is doing well - much happier now he's off the steroids smile

Twunk Sat 07-Sep-13 18:26:52

OMG OMG a Marks and Spencer's simply food is opening near us! We've gone a couple of times to the one in Amsterdam but its actually quite a hassle.

And it's on the way to the hospital. Yay!!!

Quangle Sat 07-Sep-13 20:40:40

Cor! That's fab. The hot chocolate fudge pudding is highly recommended for its restorative properties. grin

LoveSewingBee Sat 07-Sep-13 21:57:54

Oh a M&S in Utrecht, only food or also other things?

I will phone to check if there is any opportunity for Alex to get in earlier and let you know.

LoveSewingBee Sat 07-Sep-13 22:00:31

Ah food only, still lovely though. Would love to have a M&S nearby ...

Twunk Sat 07-Sep-13 23:08:15

It's on the A12 - Hellevliet services (near the exit to De Meern) - DS1 and Alex were laughing at how excited I was because I was squealing so much.

Chocolate fudge pudding has restorative qualities you say? Well I must clearly try some.

Thanks sewingbee you are so lovely. xxxx

DianaTrent Sun 08-Sep-13 10:49:41

Hi Twunk, just checking in to say hello. You would know of me from somewhere else - think batsignal and you'll know who I am grin. My DD was diagnosed with the same thing back in 2009. Just wanted to say that my DD had the same very low heart rate after her first trip to theatre as well, but it never happened again after that. I think she was just too low at that initial point to cope with the anaesthetic and the morphine all at once. PM me here or over there if you want to at any time, and let me know if Alex would like DD to send him a postcard to say she knows how he feels but it gets better. Everything crossed for a fantastic, perfect MRD result for little Alex to follow the amazing progress he's making so far. thanks

Twunk Sun 08-Sep-13 22:54:39

Bat signal received loud and clear wink

We're doing okay. Alex doesn't mind being ill because it means he doesn't have to start school, "I'm a bit poorly mummy" hmm

Thanks for reassurance re GA. He was much better after the next one. Tuesday he has an LP under sedation.

But a postcard will be most welcome and we will send one back from the Netherlands! Will pm you here or there x

Ebb Mon 09-Sep-13 17:01:48

I've been thinking of you and Alex Twunk and following your ups and downs. I laughed at your excitement of M&S. I think I responded the same when they opened one up within walking distance of me. grin

Twunk Mon 09-Sep-13 19:33:49

We lived in a small town in Hertfordshire before moving here - a Simply Food opened up about 2 months before we left. We were quite relieved we were leaving as we would have been broke. We're much more sensible now... (honest)

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