Friday, November 21, 2008

Latest update

Ok....I'm not really on blog hiatus, I've just been on princess patrol and have had too much to do to get a second to blog.

So...last night was my night and it went excellent. The best nights sleep I've had in a while...and I was on a cot....so that speaks volumes. Lisa fell asleep about 9:30 and made it the whole night through...yeah!!

She's still having pain, but if we keep her on the meds round the clock we are pretty successful at controlling it. She walked to the playroom today and around the hall once...great progress! She did protest a little, but I told her to keep walking. You know me....sympathetic all the way! We need to get her eating before they let her go home....not normally a problem, but her appetite has not kicked in yet and they've still got her on liquid nutrition which even if she starts eating will take a day or two to wean her off so we're here until at least Monday.

Got and update from her doc and this is what she wrote re:next steps:
I just wanted to let you know what was happening with the next phase of Lisa's therapy. All the local experts have convened and agree that dendritic cell vaccine is the best place to start with Lisa. Now that could mean that later on she will get the high dose MIBG, but we want to start with the vaccine. I think this is a good plan for multiple reason...first of all none of the MIBG transplant studies are open here right now for Lisa. They are filled with kids who have been waiting from previously. Secondly, the high dose chemotherapy followed by the radiation will be the best thing for the brain lesion. With that said, we need to get Lisa set up for another round of regular chemotherapy so that following the chemotherapy she can get a stem cell collection for making the vaccine. This will be done on the same machine that she was hooked up to before for the pheresis, but they just need more cells. I've asked the clinic to schedule her for December 1 to see me and Dr. Mody. If she is ready that day, we'll give her the chemotherapy. If not, we'll wait. At this point I think it will be outpatient chemo, but I'll need to ask Dr. Mody exactly and I'll get back to you.

I'm still trying to decipher this and figure out if it's good or bad that we are foregoing the MIBG therapy (3 days of radiation in isolation) at this point in the game. I don't fully understand what exactly is a high dose chemo compared to what we've had and what kind of timeline all this entails. This is definitely a game of faith that everything is going to work out.

Annnnnnnnddddddddd.....I keep forgetting to blog that Maranda's surgery is approaching quickly. She is getting her second MRI done this weekend and her surgery is scheduled for 12/3. We've been told she will have 4-5 day recovery in the hospital and could possibly be off school for two weeks after that....which means with Christmas break, she'll be out of school for the month of December.

Other than all that, we're dealing with the everyday stuff just like the rest of you. Thanks to our generous family members and friends for helping us to juggle everything else....we couldn't do it without all of you.

3 comments:

Anonymous said...

Hang in there! Thanks for all the info. I was wondering what was next.

Take care,
Sarah

Diane Ebeling said...

As always, we are thinking about Lisa! Happy to hear she is doing better. Juli is wondering if she can visit Maranda when she has her surgery? Hey, if she is there on the 11th, we will be too! (Juli has an appt in the hematology unit)

Call me!! 734-740-5191

Diane

Anonymous said...

So happy to hear Lisa is doing better and I pray she will eat more so she can go home. I wished I lived in your state so I could help out and visit Lisa. But know I keep her in my prayers each day that god will heal her. God bless you all and have a blessed thanksgiving.
Love, Kristen