Wednesday, March 31, 2010


So right after I posted our great news, yesterday we woke up to a painful lump on the back of Amani's head. I felt so numb. We had been told this was what we should expect, but somewhere in the back of my mind I had believed we were done with it.

So I had to call UCSF and they wanted us to come right in so they could x-ray the spot. I scrambled to get the kids taken care of on a day where we had concert choir, track, swimming and rehearsal to get to. Amani and I headed down to San Francisco.

They sent us to x-ray when we got there. UCSF is a huge teaching hosiptal, yet the x-ray technicians recognize us. We have been in there a lot - and Amani makes an impression everywhere he goes! Amani is the most cooperative patient in all aspects of his treatemnt - x-rays seem to be the exception. He despises being held down and made to keep still. Who can blame him? Needless to say, the x-ray process was long, loud, teary, and exhausting for both of us. We finally got the pictures and went back down to the oncology clinic.

His doctor looked at the x-rays and said there is a lesion, but the tech thinks it was there before and hasn't gotten much bigger. They are not sure why the soft tissue is having such a big reaction. Protocol is to start up another 6 week intensive treatement and a milder treatment for another 3-6 months. She said because we had an appointment next week to get his port flushed, and because the bone didn't seem to be too thin, we could wait another week and see what happens. We will go back in next Tuesday and find out what we are in for, or not in for!

In the end it was better news than I had hoped but I feel so drained and sad. His face is just starting to clear up. His little body has been so slammed for so long. Maybe the week will bring a miracle. we will take all the prayers we can get.

Wednesday, March 24, 2010

Done! (At least for now)

Our latest and greatest news, (as we approach our one year anniversary of becoming a family of seven), is that we are done with chemo! It may not be forever, but we are hopeful. Our little trooper has been bombarded with chemicals, oral meds, scans, x-rays, needles, biopsies, surgeries and more since last June. Poor little guy had only been home for 6 weeks when this whole thing started. We are thrilled. He has been chemo free for about six weeks now and he is doing great. The molluscum is doing odd things on his face, like bleeding and scabbing, but we are hoping that is because it is leaving. I am so excited that his body is getting a break. We will be going to UCSF once a month for his port to be flushed and for them to look at him and make sure he doesn't have an lumps or pain - and everytime it looks good - we are free for another month!