The return of the blue bruises.............

He's had three or so weeks with only slight bruises and petechiae, but the blue raised bruises made an unwelcome return for Dougie this weekend. Booooooooo! So his count must be somewhere under 10K which is not good.

On the good side though, we've got an appointment through for the haematologist at the Children's Hospital in Manchester on the 17th. Even if he confirms that no treatment is still the right way forward (which I suspect is what he will say), I feel that it will be worth a train trip and a day off school. Its been just over two years now, and although he's had good spells (count over 30K), he's never had a normal count and the last 5 months have been below 20K most of the time. I just think that we all need to hear that there is nothing more we should be doing. Not least because Dougie is steadfastly refusing to take any sensible precautions at the moment - his bike is currently locked in the garage because he won't wear a helmet, he comes home from school every day covered in mud from playing football, and I caught him climbing trees again yesterday.

Roll on the 17th!

Alison

Hi Alison, this has got to be so hard for both you and Dougie just wanted to say good luck for the 17th.

In Australia it is against the law to ride a bike without a helmet, that law sure would make it easier for you.

Hi Alison,
I agree, it must be hard for you & Dougie as Milly has said. Also I can understand how much a young boy would want to ride his bike and the pressure you must feel your under to let him do so. However I support the action you are taking, as there has been cases where people here in New Zealand have fallen off their bikes even at very slow speeds and ended up with brain damage. (without having ITP)

Ten or more years ago a law was passed that anyone riding a pushbike must wear a helmet as a result. Until now I did'nt realise Australia had the same law. Even my 4yr old grandson knows he can not ride his bike without a helmet. Hopefully one day your son will thank you for taking a stand on this issue. Here is hoping all results are good ones on the 17th. Rgds Benny.

How I wish they had that law in the UK. I always made my kids wear helmets, but when they get towards teenage years, it seems to be very uncool to wear one........hence the argument I am currently having with Dougie. His eldest brother has had a couple of concussions from falling off a BMX without a helmet on, so you would think that Dougie would have learnt the lesson by proxy!

Thanks for your good wishes for the 17th - probably won't result in anything, but at least I am trying!

Ali

Hey Ali - wishing you the best on the 17th!!!

Happy Anniversary -- lol -- Danica just had her anniversary date on Wednesday, the 8th of June. (2 years since diagnosis). She had her splenectomy on the 7th of June.

Yes, Dougie had his anniversary at the end of May. Didn't really seem like something to celebrate so we didn't even mention it to him. I was thinking of Danica though because I always remember that they were diagnosed about the same time.

I'm thinking of slashing Tim's tires, as locking it up will do no good.

LOL - I've frequently fantasized about doing that to my eldest son's bike. I may have to resort to it with Dougie, but at the moment, locking it up seems to suffice!

Well, today has probably been the best doctors appointment we've ever had!

Dougie's count was only 11, so thats not fantastic, although not unexpected. But the doctor definitely seems willing to treat him. He mentioned the following:

a) Whatever the UK calls N-plate and Promacta (can't remember the right names). But they are still study dtugs here for kids, and he said that they weren't a possibility until later autumn.

b) Rituximab - Dougie's preferred option.

c) Treat when necessary - probably with IVIG because Dougie hasn't had a great response to steroids in the past. He did mention trying steroids at 4 per kg but only for 4 days, rather than 1 per kg for two weeks which is what Dougie has tried in the past. If we go down the IVIG route, he will have to have a trial to see if it works in the autumn, and then a further treatment to allow him to go skiing in the spring. He still wouldn't be able to play some of the other sports he wants to do though.

We aren't going back until September time, so we've got a while to think the issues through. Dougie is well pleased though - think he has finally seen a light at the end of his personal tunnel!

Ali

P.s. And although the doctor banned Dougie from playing football matches, he says he can still go to practice sessions, and he agreed that basketball would be a reasonable compromise ......... finally a doctor that seems to understand that Dougie needs to do some of these things!

Ali - I don't have time right now, but I will respond to this, as Danica has had experience with IVIg and Rituximab.

Talk to you soon.

Michelle

Thanks Michelle - would love to hear how Danica is doing anyway.

Hi Ali -- if Dougie did not have good success with steroids, then perhaps the high dose steroid pulses would be a benefit either. Danica did not respond to the steroids but did respond to the high dose (Decadron) ONLY while she was on it. She had great counts for the four days that she was taking them, only to fall back to nothing two days after she stopped. The side effects with the Decadron were horrible. She would NEVER do that again.

The IVIg worked great, however, it was only for short times (two weeks). It is simple, and very little side effects for her. I would advise that you treat with Tylenol and Benadryl an hour before getting the infusion.

The Rituxan is much more expensive -- not sure how your medical plans work in the UK. Ours were all covered, which was a blessing. IVIg was about $3000.00 per visit, and Rituximab was $5000.00 per week, for four weeks.

As you know, she did get her counts up to around 150 following the IVIg, but would lose 20K per day. She did not get any response from the Rituximab.

All her hematologists here prefer to use IVIg before considering Rituximab.

As for Danica, she had her spleen and gallbladder out on the 7th of JUne. She also had an accesssory spleen.

She had IVIg on Friday, Saturday and MOnday, and then surgery on Tuesday. (90grams total of IVIg). Her count the day of her surgery was 221, and was 308 that evening. She had a CBC on Thursday (10 days post op), and her count was 1038. Crazy huh?

We will check her again next Thursday. Her hematologist says that it should take about 6 weeks to level out.

She is still sore, but is doing quite well.

Michelle,

Haha, its like the saying we have that you wait hours for the bus and then 5 turn up at once - it can't be only in the UK that buses don't seem to run to timetable? Anyway, Danica's million platelets remind me of that saying. I am so hoping that they get into the right range and then stay there for her. I am pleased that she is feeling ok too, please give her my best wishes.

The NHS covers all of the cost of any treatment, so I am not really worrying about the cost, or even considering it! To be honest, I don't really want him to get any treatment, but he very definitely does, and at nearly 13, I think his wishes must come into the mix somewhere. He wants to play football again, and is desperate to go skiing with his school next spring. And he wants not to be covered in petechaie and bruises all the time. The doctor was definite that he shouldn't be playing football at around 10K, and he wasn't that pleased that Dougie is playing basketball either - I think he recognised though that Dougie would have thrown a complete tantrum if he had banned that too!

I think that the attraction about rituximab is that it might either cure the problem or give a substantial remission, whereas all the alternatives are ongoing. He just doesn't want to have to even think about platelets or treatment, keeps on saying that he just wants to be normal again! I think that if we have to go down the treatment line, I would prefer to try IVIG first and see what that does, or even the higher dose of steroid because the first one did have a small effect (took him up to about 40K over two weeks I think). My impression was that the consultant would be prepared to try treatment in any order, with our wishes being a key factor.

Anyway, we'll all have to come to some sort of conclusion by his next appointment. If we go down the IVIG route, I'll bear in mind the advice about benedryl and paracetemol.

Keep us updated on Danica's progress please!

Ali x

I knew that you did not have Tylenol in the UK, but knew that you would understand what I was meaning.

Like I mentioned already, there are many side effects with the high dose steroid, and Danica absolutely hated being on it.

I also know that they have had good success with NPlate. It is only available for adults in Canada. It is still in the study phase for pediatrics. I only hope that Danica goes into remission, but if she does relapse, that it will be in five years or more. That way, she will be an adult, and will be able to take the NPlate.

Thanks for your thoughts. I will keep you posted.

Good luck with your dilemma - at least you have lots of time to mull it over.

Boo hoo - I have some bad news. I came home from work on Wednesday and Danica was not feeling well. Despite our attempts to lessen the pain with Tylenol #3's, it was still bad. I brought her to Emerg on Wed evening. She had a temperature, and her white cell count was high (18,000) Normal is 4,000 - 10,000. She has an infection somewhere.


They admitted her to the hospital and she is on IV antibiotics. Her pain is better today (Friday), but they have been doing blood work every day and it is showing that her hemoglobin is going down every day. Her white cell count yesterday was 14,100 and it is 14,900 today so I am not sure what is going on there. We did a chest x-ray today, and we are testing her urine.

Her platelets were 794 Wed evening, 685 yesterday and 615 today, so they are coming down nicely.

Michelle, that must be very scary. I have everything crossed that Danica is feeling much better soon - keep us in touch with how things are going please. Ali xx