From the recent posts, it looks like there are quite a few kids on the board who are approximately at the same point in treatment, nearer to the end. It made me want to check and see if anyone else is closer to the same point we are.
(Elsa, 19 months old, pre-b ALL, average-risk, undetectable MRD on Day 29)
We are just waiting for Elsa's counts to recover before we start consolidation. On Day 29, her ANC was in the 4,000's (I freaked, of course!) and 10 days later, when we went in to start consolidation, her ANC was only in the 400's. Oy. I was sure she would make the 750 cut-off, but here we are: it has been 16 days since we finished induction and we are still waiting to start consolidation! We have tried to just enjoy our little chemo vacation though and not stress out over the fact that she seems so vulnerable without chemo! I think her doctor really wants to get this show on the road, so we are going in this Tuesday and hoping for a 750.
Anyone else in induction or consolidation? Anyone else experiencing a count-related delay? From what I see on the boards, it is pretty common . . .
All the best,
HI Georgia...my son is 3 and just finished IM 1. We are due to start DI on Friday. We did not have a delay from induction to consolidation...went straight into consolidation. We did, however, have a delay from consolidation to IM 1. It was about 2-3 weeks. Just when his ANC would start curving upward, it was dive again. I was worried sick over it. But, alas, we started and now are on our 16 day break before DI.
Good luck. I'm sure her numbers will swing upward soon. Everything I've heard is it's a good sign anytime there is a delay meaning the chemo is working!!
My daughter Jenna (2y 9mo) is in Induction right now. She's on day 20, I believe.
She also has pre-B ALL. Her PB on day 8 showed <0.01% MRD and she has 12;21 translocation. So, most likely she will be low-risk, but we're not counting any eggs.
She is on study 0932, but since she isn't done with Induction, we don't know which arm.
Right now we are in the throes of Dex. She has been grouchy and moody and so hungry. The last 2 or 3 days she has really put on weight. Her belly is too big for pants - she needs maternity pants! The only thing she wants to do is sit on the couch and watch TV and eat.
Oh the dex - yuck, yuck, yuck. Elsa had the worst time during induction - the last week was especially miserable for us. I can honestly say that she just cried and ate all day long. The amount she was eating was disturbing! And she got SO fat - 3.5kg in four weeks (which would be the equivalent of me gaining 50 lbs. in a month!). I had to buy her all 4T clothes (she is only 18 months!).
If it is any consolation: we are two weeks off the steroids and she is DELIGHTFUL. Honestly - it is like she is a new person - happy and giggly and sweet. We have loved every second that she has been off the 'roids. There is a light! Just have to muscle through that last week. I checked out your CaringBridge - its just nice to be able to follow along a little with other people's journies. Please feel free to check out our site too. Good luck!
I actually checked out your site just the other day after seeing something that you had posted (I also added it to my Reader, so I can follow it). Elsa is adorable. I especially liked the pictures you posted of the changes from the Dex. Sad as it is, it made me feel a bit better about the changes we've seen in Jenna - it is nice knowing that it is very normal for the meds she's taking, even if they are really cruddy side effects. It is also nice to know that she will reappear fairly quickly after she stops the Dex.
My son is 9 with t-cell ALL. He is on protocol 0434 so there are two parts of consolidation. He had a week delay between the two due to low counts. It was actually nice to have a break from chemo. The days right before starting again we "partied like it was 1999". We are on day 2 of the second part of consolidation. Good luck.