Timothy Update

Hello to everyone who remembers us, and to any new people. Its been a long time since we've updated, but I figured nobody wanted to hear the same news every week. Sure, its very relevant to us, but no so much to you guys :laugh:

Anyway, Timothy has been pretty stable on his platelets, only once did he drop below 150k (it was like 89), but he's been around 150-250k since shortly after starting NPlate. He was requiring about 4 mcg per kilo, now he hovers between 1-2 mcg per kilo.

He is in school for the first time in four years and LOVES it! He is in the marching band, which is amazing because he has not played tuba for four years (middle school). I told the band director he'd pick it up very fast, but I think he has surprised him. Tim, after playing for a month, is the best tuba player in his band, and was told he is the best tuba player in five years, with one exception. He is having a blast and doing well academically...and CARES how he's doing academically! This is quite a turn of events!

I wonder how Ali's kids are doing, and Pauline, Michelle...anyone else I'm forgetting. Please update.

Hope everyone is doing well.

I have been wondering how Tim has been going, it is wonderful to hear the nplate seems to be working for him and that he has been around the 150-250k mark. I'm glad to hear you seem to have gotten a break and wonderful to hear that he is really enjoying being in school and the marching band.

Great news about Tim! It's amazing how the whole person improves when the health threat simmers down and lets them enjoy normal life for a change. We're doing great. Julianne's running normal counts most of the time (latest 158), and playing volleyball.
Norma

Hi Donna!! Long time without an update, but I do know what you mean...same story week after week. I kind of feel the same way, but I do try to still update just because I am in support of this drug and I want parents to know there are other options if they are at the end of their rope! So glad to hear that Tim is doing so well and is loving school! Caitlin is in the same boat, LOVING school, which is great! (Liked it in the past, but has never been eager to get up in the mornings to go to school or done her homework as soon as she got home each day.)

Caitlin is doing the same as Tim. Still only on .2 mcg/kg and her count yesterday was 134! We have been injecting at home most weeks and that has been nice! Their only concern is her ANC is low, but not too low. (1000, but I think normal is 1500) They want me to bring this up when we see the rheumatologist next week just so that they are aware that it has been pretty consistent. (We were told that unless it goes under 500, they don't worry too much about it.)

Only other thing I'm dealing with, is my older daughter having her first boyfriend and I'm not sure I'm ready for this. It's completely innocent...just talking and texting, since they don't have "time" to see each other. It is my intention to keep it this way for as long as possible! (She will be 14 next week, but still!)

Hi Donna

Its lovely to hear from you, especially since Tim seems to be doing so well. The best thing is that he sounds so stable in terms of counts which must be a great relief to you all. And he is enjoying school!!!!!...... there is clearly still hope for my eldest son!

Dougie and Roger are doing fine. Roger has had another couple of blood tests. The consultant seems to have decided that his blood is just strange, as he always has a low white count (ANC seems to vary between 0.5 and 1.1) and his platelets sit just under the norm. However she isn't at all worried by it so we are taking our lead from her. The nosebleeds are history at the moment, so no problems there. Dougie is doing fine too. All the bouncing around seems to have stopped for the moment and he seems to sit around 30K with the occasional dip. Its fine for the things he wants to do (except playing rugby which he still has a daily whinge about!) and he is pretty asymptomatic at that count, so all is good.

How is Isaac doing?

Ali

Pauline,
Its interesting to me that peds patients, on the study, get to inject at home. We dont' have that option. Tim is not enrolled in the study, was never asked. I know there is at least one other child (young one) who takes NPlate at our hemonc's office. Im glad Caitlin is doing so well with her counts. Did you ever hear the opinion about Rituxan's influence on the higher counts this time around (with Nplate). Tim is requiring less and less these days, and I wonder if the Rituxan helped a little (though his counts didn't budge on it). I've read it can take up to a year to 'work'.

Ali,
Glad to hear Roger is in the clear for now. That's got to help you relax a little (I know where you're coming from-one sick kid is enough! I've got three now...
Also glad that Dougie has stabalized a bit. Hopefully he make a run for a higher (stable) count in the near future.

Thanks everyone else for the well wishes. Hopefully he will continue to go up and gain a remission (dare I hope?!).

Donna,

It's great to hear that Tim's counts have been doing so good!!! After reading many posts about how low he has been in the past it's a great comfort knowing that you have finally found something that has worked for him


Deanna

Yes, there is research going on that seems to be supporting that Rituxan does have some influence on Nplate working, but they just don't know "why" yet. Caitlin's hematologist contacted Amgen and they said that they were seeing other patients with the same type of results (extremely high counts) and they were looking into stopping Nplate for some patients but found that their counts would still bottom out after a few weeks. (But rather than taking a week to bottom out, it took a few weeks.)

I have also seen on here (from the adult side) that there were patients on the study who could self-inject and then when they went off the study and wanted to continue the drug, they had to go in every week. But I don't think it is that way for everyone. Hopefully the others who are on the drug can comment so we can see if this is really true.