Monday, March 2, 2015

March 2, 2015

Dear family and friends

It has been an incredibly hard month for our family. On February 1st we suffered a tragic and devastating loss. My father in law passed away very unexpectedly. We are heartbroken and still in shock. We will miss him dearly and will remember him in our hearts forever. 

On top of that it has been a rough month for Julia. She has been sick with multiple infections and requiring daily IV antibiotics. She had an admission last week for high fevers and pain. She had a CT of her head and a full body PET scan. Her head CT showed something in her sinuses and the PET was pretty much unchanged from her last. She went to the OR today and had a biopsy done of her sinuses and a ear and sinus wash. Now we wait 10 days for pathology to see what's going on. More waiting...........

No matter how any times she goes to the OR it never gets easier. It is so hard to see her so scared and have to say goodbye not knowing what will happen. Then watching her in recovery so drugged and so out of it. She was so scared when she woke up and she had no idea where she was and what happened to her. Breaks my heart. I wish I could take all her pain away. 

She has not been herself lately and seems very sad and clinically weaker than before. I pray everyday that it is the infections effecting her and not the cancer. But as we all know things are out of my hands and I feel so helpless. We have fought so hard and made so many sacrifices and still we have no control. We are just trying to save our little girl and we are constantly having to overcome obstacles. When will she/we just catch a break. 

It's now been 8 months since we've been in NY and as each day passes I feel more and more that we will never get home. It is so hard as I want to go home but feel like this is where Julia needs to be. I miss Anthony and emily so much and our family has been apart for so long. I don't even know where we belong anymore. We are feeling the costs of being in NY more than ever and it is taking its toll financially. 

In a positive note Julia's own cell line is potentially a month away from being ready. If you remember, we have tried for years to grow Julia's own cells but the attempts have always failed. Well for the first time in 3 years Sloan was able to grow her B cells which is the first (and harder) part of the process. They finished collecting her blood last week and the T cells are now growing in the lab. If all goes as planned Julia could be getting her own cells shortly, which is what we've wanted from the beginning. Research shows that getting ones own cells as oppose to third party works better, lasts longer, and reduces the graft vs host disease. We believe Julia has been experiencing a little graft vs host from my cells as her skin is breaking out in rashes. We are very excited for this and hope this is the cure we've been searching so long and hard for. 

I will keep you posted when I have biopsy results. 

Once again, I thank all of you for your continued prayers and support  


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