Sunday, June 26, 2011


Hi Everyone,

I want to start by telling you all that Julia has improved clinically since starting treatment and she is feeling better. Her tummy is getting smaller, her fevers are finally gone, she's no longer in pain, and her counts are finally recovering. It's amazing that with only 2 weeks of treatment there's been such an improvement.

It's been a long, overwhelming and emotional 10 days. I will try my best to summarize what has happened and where we're going from here but my head is exploding so bare with me.

We had a big meeting with our Oncologist and social worker on Thursday. She told us that the pathology report from her neck lymph node biopsy has confirmed that the PTLD is back and that it is the same type and stage as the 2 previous times (this is good news, its not at a more aggressive stage). Given these pathology findings doctors assume that all the nodes that lite on PET (lungs, axila, groin and her spleen) have disease. Surprisingly the biopsy of her gut and colon did not find any evidence of PTLD. We are all confused and puzzled at this news, but we'll take it.

We have gone world wide in an effort to find options and have had an overwhelming response. Doctors from all over the world have responded with suggestions and ideas. Julia is the first kid at Sick Kids to suffer a 2nd relapse so there is no protocol for treatment, doctors are making one up. Doctors at Sloan Kettering Cancer Center in New York city have accepted Julia into their clinical trial. This is a trial in which they will give Julia donor T cell infusions in hopes that those T cells can fight the EBV and prevent the PTLD from coming back. The good thing is they will take her once she is in remission and use this experimental treatment as a preventative measure as oppose to using this as a treatment measure. The trial is 9-12 weeks with 3 weeks on treatment and 3 weeks off. The approx. cost we were told is $80,000 (assuming she is not sick and needing hospital admissions). At this point our doctors are recommending we go. They have no idea if this treatment will work but our doctors exact words to me were "if we don't try this, I think we will all look back and regret it". They are however recommending we go for 3 weeks of treatment and come back on the 3 weeks off. This will keep costs down and allow us to keep our Sick Kids team as our primary team and arrange tests and scans to be done here and shipped to New York. If we go for the full time we will lose our doctors here and have to find new doctors in New York. We have told our doctors to go ahead. We will go wherever they think is best for Julia. The next step is a video conference with New York this week or next. Then we will fly there for a consultation with the doctors running the trial. After that if everyone is happy we will be ready to go. They estimate that Julia will be ready to go to New York in 3-4 weeks. Because we have chosen to go to New York for trial we can not give intense chemotherapy so our doctor has decided to keep her on only this one drug we started and hopes she will be in remission after 4 weeks of treatment (that's 2 weeks away). If she is only in partial remission she will continue with another 4 weeks of treatments and than go to trial. If she doesn't respond by then doctors will be forced to give harder chemo. When going to trial the patient needs to go as healthy and strong as possible hence most trials will not take kids that have had too much toxicity from chemo so close to entering a trial. Our oncologist really believes that Julia will respond and achieve full remission with the 4 weeks of treatments. The problem is that this will most likely not be enough to keep her in remission for very long, so time is of the essence. This trial treatment is like flipping a coin. It's worked on some patients but not on others. Should the treatment in New York not work our doctors here do have back up plans. One being the 2 year chemo maintenance protocol that Leukemia patients follow after initial treatment. Another being continuing the drug she is currently getting maybe once every 3 months. These are all ideas that are being discussed and the scary part is no one knows which one to try or if they will work. We do not have the statistics in our favor right now. The only thing we have is hope, faith, prayers, and positivity. We need to remain optimistic and positive and take this one day at a time. Julia is an incredibly strong little girl and if anyone can do this its her.

There are a lot of things that need to be done and taken care of in the next few weeks and doctors are trying really hard to get Julia out of hospital this week so she can spend some time at home with her whole family before leaving. Our goal is to get her eating and drinking so we can have her home by mid week. She will return as an outpatient for the next 2 weeks of treatment. Our meeting talked a lot about quality of life and the teams here work hard to give that to all these children. It's important to all of us to have her be home and enjoy everyday life out of the hospital setting before leaving. Julia has no idea whats going on she just keeps saying shes going to New York City!

I would love to talk to each and every one of you but that just isn't possible. There's a lot to do and tons of stuff to sort out and most importantly I need to spend this time with my kids...all my kids together. I am emotional, frustrated, sad, angry, but most of all terrified. I am having a hard time keeping it together right now, and I really need to get it together and be strong for Julia.

Once again I thank all of you for your ongoing support and ask that you keep Julia in your prayers always.


No comments: