Saturday, July 16, 2011

Scan Results

Hi Everyone,

I am happy to report that Julia's PET/CT on Tuesday was good. There were still a few lymphnodes but they were all within normal size. Our oncologist was pleased and this is what she expected. Based on these results we are stopping chemo and watching and waiting until we are ready for New York. We do not want to over use chemo and reserve it for when we need it. This makes me incredibly nervous but I trust in Julia's doctor, she is terrific. All the staff at Sick Kids have been tremendous. Those poor nurses who have to put up with Julia deserve metals. She sure gives them a hard time but most of them have the patience of a saint. I tell you they probably finish their shift exhausted after having Julia. I don't know why but Julia is not handling the hospital days very well. She fights everything and we spend our days controlling temper tantrums or negotiating vitals. We are so lucky the staff is good to her. I hope New York will be as good....

Elio and I gave our blood on Tuesday and it has been shipped to New York. For now we wait for word from New York on the results. Everything has come together and the staff at Sick Kids have done an excellent job getting everything in order for us. We are basically ready to go when they call for us. We expect that if Julia remains well we won't leave for New York until September.

Julia is home and feeling well. She is playing and almost doing what every 5 year old would be doing. She is however limited with her line, but she doesn't let that bother her. I look at her every day and cry for all shes had to endure. I'm grateful for how strong she has been but I fear the day when she can no longer be strong. It's funny I thought that when we got out of the hospital things would be more normal but I'm realizing that our lives will never be normal. I spend everyday living in fear and wondering what tomorrow will bring.

Yesterday Julia visited with a mother from Sick Kids who lost her daughter and when she came home she asked me some tough questions about where her daughter was. She asked about angels, and how you become an angel, and why did this little girl become an angel so small. Interestingly she said "mom, I don't know what they did to her?". When I asked who? she said the nurses and doctors. You could see she was thinking about it and trying to figure out what happened. Imagine.....talking to your 5 year old about death and angels. I cried so much during our conversation I was lost for words. How could I possibly explain such a cruel, unfair world we live in.

Thanks to everyone for your continued support without it I don't think I could get through this. I know I'm still really bad at returning calls but please bare with me. Things have been really busy and there are good days and bad. I will continue to keep you all posted on Julia's progress.


Saturday, July 9, 2011

Quick Update

Hi Everyone,

Julia is home and feeling good. She was at the hospital twice this week for clinic, blood work, and treatment. Home care comes everyday to administer her anti-fungal meds so its quite busy but being home is priceless. Julia received her last scheduled dose of chemo yesterday and will have her PET/CT on Tuesday. The hope is that she is already in complete remission. Based on how well she's turned around clinically her oncologist believes we should see a complete response.

We had our big video conference with Sloane Kettering in NY on Thursday and it went really well. They explained how the trial works and that so far they have seen a 75-80% success rate. The kids they have seen so far have been very sick with progressive disease and did not respond to chemo. Therefore Dr. Prockup (from NY) thought that since Julia is clinically well her chance of success is even greater. Sloane Kettering currently has 3 donors in their bank they could use for Julia. It was discussed that since Julia is stable and presumably in remission we should explore parental donation. Short term it makes no difference but long term it is preferred if Julia had me or Elio as the donor. Therefore we have registered Julia for trial and Elio and I have signed consent for ourselves to participate. We have an appointment Tuesday at the hospital and they will draw the first set of blood required. They will ship it to NY where they will do the first set of testing (this takes 4 weeks), to see if we are a good match. If one of us is then we will undergo plasmapherisis (similar to dialysis) to retrieve our T cells. They will then be shipped to NY and grown in the lab (this takes another 4 weeks), then infused into Julia. Therefore we are scheduled to go to trial in 8 weeks if everything goes as planned. If Elio or I are not a good match after the 1st set of tests we will go for donor cells in 4 weeks. Should Julia's scan only show a partial response than we will go immediately and use donor cells.

It has been recommended that we take our wish now while Julia is well pending the results of the scan. We do not have medical clearance to do the Disney cruise and must stay on land. We will wait for Tuesday's scan and than make some decisions after that.

I will update all of you on the scan results as soon as possible.

Thanks again for everything.