Monday, January 11, 2010

get me out of here

It has begun. Labs drawn, doctor visit complete, Lisa plays as we wait for her chemo drugs. Treatment will be done everyday this week as an outpatient, unless she spikes temperature and has to be admitted. She is fine, happy and playing away. I am not, I just want out of here...this seems like the beginning of the end. I spent hours surfing the internet last night hoping to find some solution, something our docs didn't think of, something, anything to try. Nothing. So today, I'm just sad, on the verge of tears...somewhere in my mind the clock has started ticking and I can't make it stop.

I watch her so full of energy and so smart and think WHAT are we doing to her?! Infusing her with toxic chemicals, it's just so crazy. I know we have no choice, but it breaks my heart...the thought of her being sick to her stomach, tired, losing her hair are too much...


Anonymous said...

Sending lots of loving thoughts and support your way. Many are with you in mind and spirit, if not in person or circumstances. XOXO

Lynn Zott

StephanieRN said...

Hi, you probably don't remember me but I took care of Lisa when she was in the PICU (aka "the fish bowl") at Mott after her surgery last year. My name is Stephanie and you gave me her bracelet. Ever since then I have been checking her blog site and praying for her and your family. Anyway, I know you are looking for additional treatment options and I wanted to tell you to check out the St. Judes website. I was looking on it tonight and they currently have many research studies underway for recurrent/refractory solid tumors which is what neuroblastoma is classified as. I don't know how different these are from what she has got in the past or from what she is currently receiving, nor do I know how hard to is to qualify as a research participant, but I thought I would at least pass on the info. Best wishes and stay strong!!! -Stephanie

Anonymous said...

Hang in there and stay strong...Our thoughts and prayers are with you.
Laura Kelm

Anonymous said...

Lisa you're adorable!!! And I pray all the time for you!!!
Keep a positive attitude and hang in there!


Anonymous said...

I am greatful that Lisa is able to play and be happy. I am sending thoughts of love and comfort to you.

I don't know if you are interested but I mention in case you wish to investigate: there are clinical studies that show that Reiki (it is classified as a type of massage/body work)is effective in reducing stress, pain, and or anxiety for cancer patients. U of M hospital has a newly formed department that provides this type of massage service among others (link is below). What's not clear to me is if this department works with Mott's as well. I know the woman who was hired to pull this together and highly recommend her. Feel free to call me if you wish to discuss further.