DD, 8mo, has wilms tumour on kidney, started chemo last week, reassure me pls!

[titferbrains]

Any encouraging stories or advice? I'm finding it a bit tough to strike a balance between being vigilant about infection/cleanliness and never leaving the bloody house.... DD refused boob all night last night after MRI scan yesterday morning. She is dribbling like mad so impossible to know if she is off food due to meds or teething or combo of both. And of course cannot give all -calming calpol anymore, SOB.

Anyway, she has 3 more chemo treatments then surgery to remove. Praying like mad that it will be stage 1 only but may be stage 2 - there's a possible thrombus (clot) in a nearby vein.

Great to hear from anyone who can offer experience and support to get me thru this!!

Thanks x

Hi tfb,

Saw your title of this post and just ahd to message you and give you a virtual hug.

Caring for children with cancer is so not what we planned in our lives and then it's thrust upon us.

Not quite the same as your horrid situation but my son has also had a tumour (rhabdomyposarcoma on his brain) and finished treatment only 6 months ago.

I wrote a blog and still do update it, but it started only about a week after diagnosis - so you may see a few things in there which you can relate to or help you through this really tricky time. You can and will get through it, and in fact, we found post treatment worse than diagosis and treatment but everyone is different. You will have the strength to do this and care for you 8mo. Also see if your hospital has a facility for parents to talk through their feelings as I found it very hard to talk with friends and family about it.

leosteam.blogspot.com - if you scroll right down, you'll see a list of dates of posts on the right hand side.

Do get in touch if you need a hand to hold.

Love and prayers, H x

Hi
Am sure you are v busy at the hospital with DD just checking in to let you know you are in my thoughts.
Hope everything going well

Hope you're okay and your DD's surgery went okay too. Am sure you're going through hell right now but somehow you will get through it. I'm not going to say be strong because it's difficult to be when your child is sick and has to have all the treatment that she does - but you will get through this somehow.

Hope you're okay

Hi
Just checking in again so you know we are still thinking of you

Hi all, just to say that DD is home now and she is doing really well.

We had a few setbacks: her surgery started late which made for a very long day, and then her epidural leaked after the op, so had to be removed and then she was on nurse controlled pain relief - which took a good 24 hours to get right. That was a black time that I'm trying to forget, but amazingly she hasn't needed any painkillers at all today so just goes to show the miracles of baby's bodies and their ability to repair themselves.

SHe had a big cut across her tummy but it's a very thin line so won't leave much of a scar.

She also been quite sensitive and clingy, but is still remarkably independent considering all that she's been thru and that she is hitting "that age" for sep. anxiety. I'm trying hard to help her remember her old habit of falling asleep by herself...

anyway thanks for keeping in touch, I'll post again soon but right now she's crying...

So pleased to hear everything going well.

Do you know when you will hear the results from the surgery - or have they given you any indication how it went?

What a little trooper she is!

They've told us it's stage one, so only 3 weeks of chemo left, YAY YAY YAY!

Offering you lots of support. You sound very strong and brave about this, which is obviously just what your daughter needs. I admire you. I think you're wise to avoid too much internet research. x

I have just read this thread and I am in shock of your terrible situation, and in awe of your strength. An 8 month old baby with cancer? How can this be fair? But, you sound like a tower of strength, even if you don't feel like one.

hugs and chocolate and whatever gets you through the day.

Tfb - so pleased your little DD got through her surgery and that it's stage one. Great news.

BTW, I wouldn't worry about her not going to sleep by herself at the moment as I'd imagine both you and her just want to cuddle each other all the time - so why not? There'll be time once she's finished chemo and home, and things return to 'post-cancer normality' that you can settle back into the routine where she falls asleep on her own.

The reason I say this is that our son was 3 and went back into nappies upon his cancer diagnosis and we found that hard and tried to persuade him to wear pants again, but he had to do what he had to do - and so we as parents just had to do with it.

So do what you need to in order to help you and your DD get through this time.

Hi,

If you like I can email you in case I can offer any useful information. My dd was diagnosed with a Wilms tumour aged 2.

She is now 5.

wdmolg - I just had a look at your blog. Leo looks lovely and i'm so glad he is doing well.

Your blog brought back a lot of things for me and we too had the anti-virals and chickepox scenario.

Hi listen-

Would be great if you could tell me what you remember about the post-chemo time - how long do you think it took yr DD to get back to normal, when did her hair start growing back? How careful were you about avoiding other kids in that first 6 months post chemo?

we have been seeing very few kids in order to avoid infection, particularly just before the op, but am now less sure how to proceed. I'd like to put her down for some playgroups but not sure if this is a good idea...

She is on great form today just beaming at me. She is doing well taking a bottle now which means we're packing in the calories and hope to have a normal sized lil'un soon. will be lovely to get rid of tube and see her sweet cheeks again.

Hi titfer-

My dd's was a stage 2 so we had longer chemo, 6 months of it following her operation.

We did as much as we could to avoid other children and actually people in general while she was having chemo. I was particulalry worried about chicken pox and it seemed to be around all of the time.

After the chemo finished and her line was removed, we were less cautious about seeing others. I guess you know your dd's blood results each time she has chemo and so will be aware of the neutrophil readings. One of the nurses we saw said that unless the neutrophils were really low or she was neutropenic (this only happened once straight after her op) we should try and go out and about as normal.

She seemed to pick up quite quickly following the end of chemo and went back to pre-school in the April following end of treatment in the February. She was exposed to chiecken pox and as she was less than 6 months off treatment, had to have a long course of anti virals. This was in the September and at the same time she also had cellulitus, I think as a result of her immunity being lower than normal.

I think they say that it can take up to a year for the immune system to recover but that may depend on what chemo drugs were given and for how long. What did your dd have?

Sorry, very rambly as I's supposed to be making an early tea, anything else you want to ask please do and I will get back later.

Meant to say, her hair began to grow back during the chemo. She lost almost all of it and it grew back a completely different texture and different colour!

Hi tfb and listenglisten,

Hair started to grow back for our son after about 2-3 months and he finished treatment in November, line out in December and he now has whole head of hair and I cut it at the back for the first time last week - but his fringe is fine!!

We did not see any other non-cancer kids for the whole 7 months unless we knew them - ie. existing friends and we knew they did not have any colds, chicken pox etc. Our DS's chemo was high dose so he was neutropenic every cycle as he had nine cycles, 3 weeks apart and when he was neutropenic, he was more often that not in hospital for infection, high temp etc etc. But on the one or two times he wasn't in hospital, we avoided everyone and bundled him up with us.

You'll know in your gut when you can sign up for playschemes. Try not to push yourself into 'normality' - just because you think you should or would normally be going to playgroups does not mean you should.

If you're in or near Bristol, there's a lovely playgroup / parents get together which I can mail you about on a Thurs afternoon - and kids on treatment can still go even when neutropenic. Perhaps ask the Clic Sargent social worker or nurse if they know any where you are.

Asfor how long it takes for the immune systemt to come back, think you're right listenglisten, it varies depending upon the chemo drugs. Our son is still very tired, picks up all manner of colds etc - and pushes himself until he drops!! So regardless of my fears or is immune system being low, he goes for it because he's 4!!

Feel free to mail me.

Glad your DD is well post-treatment listenglisten - nice to hear the good stories after us all going through so much with our children.

How are things going atm titfer?

Just to say, DD is doing well, and even put a tiny bit of weight this week which was celebrated by nurses and docs and us!!

She is a bit vomity after the chemo yesterday, it feels like everything carries the faint aroma of her sick at the mo, NICE.

Bit of a tough day at the hosp yesterday as we saw 2 patients we met at the beginning who were having problems and I got quite upset feeling guilty that my baby is gettting better. It was one mother's birthday yesterday and her son's temp had hit 40.5 in the night and the docs didn't know why his fever was so high, she has been living in hosp with no DP for 7 weeks, she had no-one visiting her and was having her wisdom teeth out today. She just looked so worn out by it all. WE took her a gift and gave her big hugs but I wish I could do more. I used to feel positive about going to a hospital where I know all the patients are getting such great treatment but yesterday I just felt sad for all the parents struggling to cope.

DD is very smiley and chatty thank goodness tho not sleeping very well. She is taking a bottle with little or no fuss now so I'm cutting back on the BFINg, I have probably rushed it a bit but I just want to be free of it all and wear what I want!! hmm. VAIN emoticon...

Hope you are all well.

Glad things going well

Yay for weight gain!!

for other lady - is lovely you can think of her when you are going through all this.

Hope the good news continues

How are things going titferbrains?