Dougie has appointment with the haematologist.....

Hi Ali,
I hope all goes well for Dougie with the liver test. At least we know that our kids are getting more Vitamin D these past few days.

Hope all works out for you guys and you are enjoying the summer break. We have finally finished school today and went to see the Olympic tourch relay this afternoon running through Hendon. There was quite a crowed.the kids were realy quite excited.

Will speak soon
Best
Le'at

We went to see the Flame a while back when it went through Crewe - it was VERY quick!The Paralympic Lamp is coming soon and we might go and see that too. We are going to see the quarter finals of the football at Old Trafford at the beginning of August just so that the kids can say they went to the Olympics. I imagine its very exciting in London at the moment.

P.S. Yes, sun rather than constant rain has been a pleasant surprise the last week!

Ali,
I join Le'at and Beth in saying I'm hoping it all goes well for Dougie in August. Hope you can move ahead with this trial so you just have an option and all that's gone into this isn't so utterly frustrating.

Very excited about the Olympics starting! Will be glued to the tube.

Mia is doing pretty well. She is very tired but her numbers are holding their own more or less. She had her ITP treatment in late June, as Ali knows, just before our trip to Spain. When we left, she was at 256. Ten days later (10 very very hot Spanish days and lots of sun), she started getting periodic nosebleeds, and she was tested in Spain: 27k. (A cbc in Spain is part of the full-immersion tour!) The hospital there was so controlling, really. We were THRILLED at 27 -- it's nearly party time, as Ali would say, but they wanted to keep her. Actually put an IV in. My husband had to use his most vociferous Spanish to get her sprung -- and show them our bottle of predinisone -- and even then they made us promise to come back in two days for another test..... Of course, we never went back but rather flew home as scheduled.

Since then she is up and down: 80, 44. Nosebleeds come and go. None are bad and they all stop quickly so I know they are not a big deal. But MIA feels they are a big deal since she has never been a bleeder of any sort except when in single digits. What I really think is happening is that, after 4 months, the reality of ITP is finally sinking in for Mia. She's been SUCH an amazingly good spirited soul through all of this and I think finally it's hitting her in a deeper way that ITP could well be here to stay, how it interferes (if not all that much, really) with her life, that it's just on her mind a lot. I don't want her to worry but I suspect this is part of the process of coming to terms with this illness that, at the end of the day, is hers to live with, not mine. (Oh, I wish I could make it the other way around!)

I'd love thoughts on this from others -- how your kids have grown into the diagnosis.

Le'at: Hope Yael is still itp free and clear.

Best to all
Firkins

Hi Firkins,
I really feel for Mia. I think that one just trys their best in which ever situation one is given and you just get on with what you have. Focus on the positive on every day achievements. It's amazing you managed to go to Spain and have some time out (apart from the nose bleeds). I probably would have posponed the trip abroad. I'm not so brave.

It can still go away. They say up to a year it is acute, then it is considered chronic. I thought you were trying out alternative herbal medication - homeopathy. How is that going?

Thank G-d Yael's bruises have gone down. Last count was 133k, so I'm happy with that. Just will keep an eye out every so often.

I wish Mia strength and good health.

Healthy platelets to all
Le'at

Thanks for the good wishes everyone - just hope they work now!

Firkins, I remember Dougie being particularly annoyed about ITP when it became clear that it wasn't going to disappear quickly and because no one could give him a timescale for him getting better. He used to get very cross and upset about hospital visits (he used to refuse to talk to anyone at them), and I think that this was because it interferred with his coping mechanism - namely ignoring everything. He still doesn't like to be reminded about ITP and he hates to tell other people about it. However, his bruises seem to have given him a certain amount of street cred at school!

The problem with illness generally and ITP specifically is that its generally outside your control, and I think thats quite difficult for anyone to deal with, never mind a teenager! I've found that letting Dougie make decisions himself seems to help - for example, I've written to school to say that he can judge for himself whether an injury at school needs us to be called or hospital or whatever. His original mechanism of ignoring it for 99% of the time still works well for him too though!

Good luck, Ali

Firkins -

I agree with Ali that giving the kids, even when they're young, some feeling of control helps. Brady has had many ups and downs over the years and I remember when he was about 9 and had a major nosebleedbleed episode Christmas evening. We ended up in the e.r. because of blood loss and not being able to stop the bleeding. He begged not to be admitted on Christmas so they got the bleeding to stop and we went home and promised the doctors we'd go the next day for treatment. It seems like a little thing but it was really important to him to have some say in what was happening. He still wasn't thrilled about the treatment the next day but was more accepting of it since he had input.

Anyway - Brady also gets nosebleeds but usually not until he's under 20k or so. I know that he worries once he starts getting them because he knows that means his count is dropping. But he deals with it better now. Maybe just letting Mia decide on the day she goes in for the blood test and other small decisions helps.

Brady has gone through stages of anger, denial, sadness, etc. - all connected to ITP. He isn't much of a communicator but I try to get him to talk when he's obviously bothered. Sometimes having a good discussion with the doctor helps also. Not focusing so much on the ITP (which is difficult to do in the early stages) and trying to think of cool things to do when the count is good also helps.

Good luck with everything.

Dear Beth and Ali,
thanks for your really thoughtful responses. Always so good to hear/learn from those who are further ahead of us on this path.

We do give Mia a lot of latitude and say, so I'm glad our instincts jibe with what your experience has been. I'm always mindful that it's her disease not ours, not mine. She has to feel some control over this crazy nutty (not controllable) thing going on with her body. So, we do let her pick days for blood counts (or not). She has a big voice in treatments or not. She decides what she is comfortable doing at school or not.

The thing I'm struggling with, I guess, is that at this point in time Mia is being very, very conservative and protective. You know, for girls the bruises don't score any points at school. So her count now, for example, is 44. Mom thinks, "Fabulous! Nearly 50, you can do just about anything but maybe sky dive." Her numbers are on the way down probably but still her very conservative response concerns me. She opts out of tug of war at camp, opts out of bunk unit soccer game, etc. She has nosebleeds but they are very MINOR and stop almost immediately. She's really not a bleeder at all, even when she was in single digits. I guess my concern as her mom is that I don't want itp -- however long it may last - to make her timid. For her to use it as an excuse not to engage with the world and life.

On the other hand, ITP and the past several months are a huge pill to swallow. Mia's always been an observer, more reticent from the get-go, so my gut tells me she is just absorbing the reality of ITP in her way. And that way may, at this point in time, be cautious and conservative.

This disease is filled iwth great spiritual teachings about letting go. I am just going to let go of the minutiae and trust my amazing daughter to find her way.

I really really appreciate your words, Beth and Ali -- so helpful.

Here's to good numbers and a good liver test for Dougie!

Firkins

Teenagers often don't do what their parents want!!

Maybe get Mia to write down a long list of the things that she wants to/used to do, and then go and have a good discussion with the haematologist about whether they are sensible at her counts?

Mia's at 124 last check. holy moly. I know many are homeopathic skeptics but I have to say I am NOT. I posted in teh Natural remedies section just now. Really less about her platelets (which might have come up perhaps on their own -- but from the teens? maybe....) I'm much more moved by the changes in Mia's temperment -- the easing of the irrtability that so often gets in her way, that clearly annoys and frustrates her but which she just can't get out from under. THAT has dissipated since homeopathy and, every time she has a remedy, gets another very clear boost. .....Just sayin'!

Hope all's well. What is Dougie's status right now? Loving the Olympics. Mitt Romney is a boob -- sorry he insulted your country. The Olympics have been FABULOUS!!!

Hi firkins

Its so great to hear that Mia is doing better all round. We are waiting for the results of Monday's tests to come back - fingers and eyes firmly crossed.

Ali

Whoopppeeeeee!

Liver function test finally reasonably near normal and the dr agrees that Dougie meets the trial criteria. Starting on 6th September all things going to plan.

Dougie is really pleased, I am less so - thinking of all those weekly blood tests in Manchester!

Ali

.........and yet again things haven't gone to plan, but this time, probably in a good way!

Platelet count today was an amazing 41, which means that he couldn't start today. The bad bit is that the study is now closed, so he won't be able to start at all should he need to. But hey, I am not thinking about that, just enjoying the improved count for now. It might drop again, but as Scarlet O'Hara would say, I'll think about that tomorrow!

Ali

Oh my, I'm not sure if that is good or bad. Similar happened to me when I was starting the Nplate trial. The week of the screening I had a count of 2, the following week to start the trial I had a count of 29. I was on no medication and had never had such a spontaneous rise before, but the cut off point was 30 so I made it by the skin of my teeth.

Ann, I am just telling myself that Eltrombopag obviously wasn't supposed to happen for Dougie - its been a bit of a disaster all along! He is just happy that he is able to play football on Sunday for now

Amazing news!!! I am soooo happy for Dougie!!! I agree all the setbacks, now this maybe it just wasn't meant to be!! I do hope he stays up and can continue enjoying his football!

Thanks Crystal - he loved footie on Sunday although their team lost. It might not last but he's darn well going to enjoy it while it does!