A note from Michelle - Danica's mom

Wow - I could not believe the stuff I just read. What an incredible change in events. Who would have ever thought that Tim would have such great counts, and is now able to do all that he is doing -- AND loving it.

Caitlin sounds terrific too. I am glad that the NPlate has worked so well for you guys. It is not even being studied in Canada yet, so our hopes for trying that are a billion years away.

Ali - I am glad to hear that things are still okay with you -- sounds like things are not great, but at least they are "holding their own".

Danica still continues to require IVIg every two weeks. She will still drop down to 1 or 2 before treatments. We are still waiting to get approval to start the Rituximab. I am not sure how long this is going to take, but hopefully it will be soon. I think you guys that tried it were the same -- once a week for four weeks. ???

I don't think I told you guys about Danica's accident this summer -- she was boating and when her brother stopped the boat, she stood up and the boat jerked. She did a face plant into the dash of the boat. She took a chunk out of the boat, broke one tooth, chipped six others, and had a laceration to her lip which required 7 stitches. As of this date, you can't even tell -- the lip healed incredibly well, and she has the teeth fixed. It was sure scary when it happened - I figured that her platelets were about 20 when it happened. I would have never thought that she would have healed so great. Thank God that she did.

Michelle - mom to Danica -- 43 IVIg infusions to date -- (no wonder we are so anxious to try the Rituximab)

Hi Michelle

Its lovely to hear from you and to know that Danica is OK. Is she still going into a cleaning frenzy whenever her count drops, or has impending teenage wiped that one off the map? Can't believe how long the Rituxan stuff is taking to organise given that the IVIG is your only real alternative - it almost sounds like the NHS!!! I don't think NPlate is an option here either , although I've heard of some trials of the other daily pill stuff. Anyway, I really hope that they manage to sort something out for you soon.

Actually I was thinking things are pretty good for my kids at the moment. Roger is back to where he started before the original blood test - i.e. out of the normal range but not a problem, nothing to worry about. At least the nosebleeds have stopped for now. And Dougie - well it just goes to prove how my hopes and expectations have changed over time, cos a more or less consistent 30 seems OK to me now - no real symptoms, does pretty much what he wants to do and, best of all, very little hospital!! I am reposting the photo below to show just how little it is affecting the things he does - the photo doesn't really do justice to how high this jump was!

Best of luck with getting some new treatment anyway. Keep in touch and remind Danica from me that if she ever wants a real cleaning challenge, my house is always available!

Ali

P.S. The week after you last posted about Danica's accident, Dougie dived into the deep (but not deep enough) end of the swimming pool, hit the bottom and broke his teeth too - must be a 12 year old thing!

It good to hear from u all, I have been wondering how your kids have all been going, good to hear everyone is doing okay. I don't update too much on the adult thread these days cause not much has changed lately and I don't want to bore everyone with the same things over and over. Mine have been jumping up and down all over the place lately, one week they are high 20's or low 30's and next week back down to around between 10 and 13.

Hi Michelle,

I was wondering how Danica was doing. Wish they could get her on something to keep her counts up a little longer. Glad to hear she healed up OK from her accident. Zach's counts are great - staying around 100 k. He just had his first hockey game of the season tonight! We are waiting to see a neurologist about his eye problem - the opthamologist thinks it may be an ocular or retinal migraine. Seems like we have seen every "ologist" with him. Take care and hopefully things turn around soon for Danica!!