I am sorry it has taken me so long to update you. This past week was very bitter sweet. I spent my time planning a very special princess party for Julia, and at the same time trying to cope with the loss of a very special little girl.
On Tuesday evening Julia's hospital friend Rayna lost her battle against Leukemia. She passed away peacefully in her parents' arms. It was one of the most horrible experiences ever for me. We have become very close to this family and without their support I would have never made it through the transition to Oncology. They supported, guided, and educated us the whole way through our journey. Julia's weekly routine every morning we arrive at the hospital is to visit Rayna. Spending the week trying to support her parents during the worst thing imaginable and going to the funeral made it very hard to enjoy the party planning. Julia had her birthday party on Sunday and asked us if Rayna was coming. I had to find the right words to explain to Julia what happened. She is too young and doesn't quite understand. All I could tell her is that Rayna is an angel now who lives in the sky. Julia wanted to send her princess balloons to Rayna. So we told her she could let them go up to the sky and Rayna would get them. It broke my heart.
On a happier note Julia is doing very well. Tomorrow September 8th is her 4th birthday. She had her birthday party on Sunday and she had the most wonderful time. It felt so good to do this for her. She got to be with all her friends and family, and meet Cinderella, Mickey, and Minnie. She played, and jumped in the castle, and got her face painted, it was great to see her be a normal 4 year old for the day. No needles, no tests, no blood work, no hospital, just all about fun.................except that her home care nurse Chris was there. LOL. Please see some pictures posted below from her party.Julia is scheduled for her last cycle of chemo this Friday. We will discuss the plan going forward with the doctors then. She will need a post chemo scan to be sure that the PTLD is gone, and until that happens doctors will not take her PICC line out. This puts me in a very stressful situation because Julia really wants to go to school. Her first day of kindergarten was suppose to be tomorrow. She is so upset and starting crying tonight when I had to tell her she wouldn't be going. I just want her to start living a normal life, and enjoying all the things a 4 year old should enjoy. At the same time I am so scared that she will get sick, and we will have to be admitted again. It has been so wonderful to see her look and feel so good. We will see what doctors have to say on Friday. I will keep you updated.
I would ask that everyone say a prayer for Julia as she goes through what hopefully will be her last cycle of chemo ever. And also for Rayna's parents that they find the strength to get through this horrible time.
P.S. Happy 4th Birthday to Sophia Di Iorio (Julia's cousin - they share the same birthday).
Sincerely,
Nadia
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