Update

Hi Everyone, As some of you have heard Julia's biopsy never happened. She went into the OR and the surgeons removed her ear tubes and did a sinus wash but unfortunately were not able to perform the biopsy. After 2hours in the OR the surgeons came out and said that in order to get to the node they would need to do a full neck dissection. All the doctors felt that there were way more risks then benefits so decided not to go after the node. Their exact words " a neck dissection is a big deal and may put her in ICU". Initially I was furious, we had already waited 2 weeks and now we had nothing. After calming down I was happy that the doctors made the safest choice for Julia. We went to NY last week and Julia received her cell infusion. Things went well except that she got an eye infection and required IV antibiotics in NY. Not surprising as our trips to NY seem to always have some drama. Julia's EBV numbers are increasing and doctors are worried about this trend. Looks like we may start a chemo drug even without biopsy just to bring the EBV numbers down. Since the biopsies seem to be difficult and put Julia at risk the team has decided to repeat the PET scan on May 30th to see what has happened in the last few weeks. At this point we are returning to NY the first week of June and depending on the EBV numbers and her PET scan we may need to go back to full cycles in NY as oppose to monthly infusions. Many of you have asked me what the hell is going on and trust me I know the frustration first hand. Unfortunately Julia is in uncharted waters and both Toronto and NY are doing there best but really have no protocols or experience to follow. So it really is a day by day, week by week plan and there are no "right" answers or solutions. At this point I am anxious for the repeat PET and we will go from there. I will continue to keep you updated as we know more. Thanks for all your support. Nadia

Update

Hi Everyone, I apologize for the delay in updating you all but a lot has been going on this past month. Julia had her scans in NY a couple weeks ago and the results were not at all what we hoped for. The scan shows enlarged lymph nodes (which lit on the PET scan), in her neck, chest, abdomen, and bowels. Our NY team was very concerned and wanted Julia to immediately start a chemo like drug. They wanted Julia to get 4 weekly doses before her next infusion on May 9th. Our Toronto team did not agree. They wanted a biopsy to see the pathology of the disease before starting any drugs. So after 2weeks of back and forth Julia will be going into the OR on Wednesday for a lymph node biopsy. She will have to remain in hospital for a couple days to recover. Then the following week we leave for NY again. Since pathology results typically take 2 weeks we will not have results or any treatment before returning to NY for more cells. NY has changed us to monthly infusions starting this month. So Julia will receive monthly infusions for the next year. The walls are closing in on us and I really feel like our Toronto team is also feeling this way. Julia remains relatively well, although is showing signs of things changing. At this point Elio and I are beside ourselves with worry and don't know exactly what we will do next. Hopefully we will have more answers in the weeks to come. Last Sunday we attended a funeral for a very very special 10 year old girl, Tamara. Her passing was so sudden and unexpected and although I have been too many her death has hit me very hard. She will be sadly missed and forever in our hearts. To her family I wish you much love and strength. We love you Tamara. I will update you on biopsy results and please very one say a prayer for Julia on Wednesday as she visits the OR for the 100th time.....my poor baby girl. Nadia

Happy Easter

As some of you know San Antonio Fish Market held a benefit last weekend in honour of Julia. It was an awesome night and i have not seen Julia that happy in a very long time. We would like to thank the Lionetti family for the amazing event. They are an amazing family and we are forever grateful for their support, encouragement and generosity. Julia has remained well over the last month....thank God. We are off to NYC on April 9th for Julia's next treatment. She is also having her PET scan on the 10th in NY to see if she is in remission. We are extremely nervous for these results.....we need her to be in remission. Our team in NY and Toronto have decided that Julia will begin a maintenance schedule next month which will consist of monthly infusions. Therefore we will be travelling to NY every month for 1 infusion. If this works the maintenance treatment will continue for 1 year. I will keep you all posted on scan results and please say a prayer for a good scan that shows Julia is in remission. From our family to yours we wish you all a very Happy Easter. Nadia

Home Sweet Home

Hi Everyone, I am glad to report we touched down in Toronto last night. We are finally home but of course not without drama. NY would not let Julia go unless we agreed to go from hospital to hospital. So Julia was basically given a dose of IV antibiotics in NY and we jumped on our flight home. Once we landed we went straight to Sick Kids. Although the care in NY was excellent and everyone took good care of us it was so nice to see our oncologist here. I wanted to cry when we were finally home and with our home care team. I felt so safe and secure. Our oncologist was waiting for us and as usual did everything she could to keep us out of hospital. Unfortunately the drug Julia was receiving in NY we do not use here in Canada. But Julia's doctor was able to find a comparable one and its oral.....thank god no admission. Julia will need to be back at Sick Kids Wednesday and the docs are planning to take out her ear tubes as this looks like this is the source of infection. NY wanted us back in 3 weeks for a PET scan but Toronto will do the PET and save us having to go back. Therefore Julia will have a scan in 3 weeks to see where we are at with the cancer. Depending on that result NY will decide when further treatment will happen. It was an incredibly long, stressful trip to NY and we are so glad to be home. Anthony and Emily were so happy to see us and Anthony is so scared about what is going on. For now we plan to spend much needed family time together over this long weekend. I will continue to keep you updated on Julia's progress. We thank all of you for the incredible support you have given us. Nadia

More bad news........

Hi Everyone, Julia was once again admitted to NY hospital yesterday for high fevers. She has a very bad ear infection that is pouring out fluid. Doctors are not certain if this is the only reason for fevers and are not taking any chances. They have put her on 2 IV meds to cover her. Elio took a last minute flight to NY last night once he found out Julia was admitted. So we are both here and Anthony is having a very hard time with this. Poor Anthony and Emily they have been passed around for the last 2.5 weeks and Anthony is old enough to understand something is wrong. He called last night with many questions about Julia. He was very worried about her. Needless to say her LP yesterday was cancelled and cell infusion scheduled for today has also been cancelled. At this point I have no idea when we will get home. This has been a nightmare of a trip. I will keep you all posted as I know more. Nadia

Change in plans......again

Hi Everyone, Well once again our plans have changed. We will no longer be coming home on Tuesday. Doctors here have decided that they will do a LP (lumbar puncture) on Monday to see if Julia has any disease or infection in her spinal fluid. There is a test here that Toronto is not able to run. Given this her third cell infusion has been postponed to Wednesday. Therefore we will not be coming home till Thursday. It really feels like we have been here forever. Poor Anthony is so upset as we have changed our date home so many times. He was really upset that I will not be home. The Ronald McDonald House is great for the kids but really not so great for the parents. I am surrounded by sad stories, people dying, people leaving being told there is nothing left they can do for their children. It's insane that this is so "normal" in here but really this life is so NOT normal. Being surrounded by this awful disease that has robbed our kids of having a childhood is becoming way too much to bare. Right now I am trying hard to just get through the days and anxious to get home to my family. Thanks again for all your love and support and hope to be updating you soon from home. Nadia