July 19, 2013

More good news

Quick note with more good news:
Bone marrow was originally at 30-50% disease involvement and is now at 5-10% involvement.  That's a great decrease!  CT also shows a good decrease of all of the recent growth.  Dr. B is very happy with her response to the chemo.

We have consented for cycle #4 of chemo, which is to be cisplatin and etoposide.  Hopefully this will be the last round of chemo.  She had her hearing tested today to get a baseline because the cisplatin can cause hearing loss.  As of now, her hearing is normal.  We have a consult for the MIBG therapy in San Francisco on August 7th.  That therapy will begin early September, and will either be two or three infusions.  I don't know too much about this yet, but Mad will be very radioactive after the treatment.  So radioactive that she will have to be in isolation, in a lead-lined room.  Sounds awful, right?  We will only be allowed to be with her for a short amount of time each day.  That amount of time will increase as the days pass and she loses some of the radioactivity. I talked with her a little about this today and she doesn't seem too freaked out about it.  She just said that we'd better bring lots of games and movies and things for her to do.  At our doctor's suggestion, she is going to be seen by the psychiatrist during her next chemo admission to help her prepare for this period of isolation.  So, if it does not go well I guess Zoloft is always an option.  Overall it sounds like each treatment period will be about a week.  After that we will see where she is at that point and go from there.

I also talked to Dr. B. about the possibility of letting Mad go to her first day or two of Kindergarten.  I know this would mean a whole lot to her, and if I'm being honest, to me too.  I want her to feel as normal as possible, and to have normal experiences.  Her friends have been amazing at looking past her hair loss and just getting on with the playing.  I am hopeful that other kids will be able to do the same.  Normally kids on this high-level treatment plan don't go to school at all, but Dr. B. said that she is willing to make an exception provided that she is a) out of the hospital on time after cycle #4 and b) her counts are still above 500 at that point.  So, we will be crossing our fingers that this can happen for her.

The last of the chemo is going in now (Friday night), and we will be going home tomorrow.  Somehow, I'm sure we will see this place again before our next chemo admission....but hopefully not!


Anonymous said...

Would be great if she could start school with her friends. We are leaving here on the 3rd in the afternoon after Dad's company picnic, so should be there fairly early on the 5th so we can visit before you take off for SF.

Adelaide and Harleigh Morris said...

What awesome news about her marrow and growth!!! That makes my heart happy! I hope she is able to start K with her friends, it would be so great for her to have the same experiences as them, and to have a little normalcy before the therapy in SF. I hope that therapy goes well, and I'm sure she'll handle it like the champ she is. She is so strong and understanding, it is incredible! Way to go Mad, beat this beast!!

Siobhan N said...

Great to hear the good news. Go Madeleine for not being freaked out about the lead-lined room! I hope she gets to start kindergarten with her friends. I bet the other kids would be fine. What's great about kids this age is that they're still forming their idea about what the world is like, so if they see something new, they just absorb it as part of their world and move on.

Anonymous said...

I'm hoping that Mad will be able to go to kindergarten too! What a scary treatment, lead lined room??? Thank you for updating us.