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

Update from New York

Hi Everyone, I'm happy to report that Julia is out of hospital and received her second cell infusion yesterday. She went absolutely crazy and doctors were forced to drug her which put her right to sleep. She is so tired of all the poking, exams, people, lines, etc. She feels like she has no control. As per doctors strong recommendations we have started giving Julia an anxiety pill which will hopefully allow her to feel more in control and make this whole situation a little easier to handle. She will be back at the hospital tomorrow for clinic, blood work, and an iron infusion. Julia has no iron not even stored in her bone marrow. Doctors feel it is very important that we give her iron through an infusion. We have talked about it for many months and NY has decided it's time. She will go back to hospital on Monday for her 3rd infusion and then we will finally get to come home on Tuesday Feb 12th. Elio is leaving today (we should have all been coming home), so Julia and I will be alone in NY for the next week. I am feeling very nervous about this as I have never been here alone and for those of you who remember this is the place that triggered my anxiety last year. It will be a long week as I don't think I will venture out by myself so we will spend most of our time at hospital and Ronald McDonald house. Also a little nervous that Julia will get sick and I will be alone. They tested her for RSV again yesterday and she is still positive.....boooooooo. Well a couple more hours with Elio here and then we will say our goodbyes. I hope and pray that this next week passes fast and is uneventful. I've been away from Anthony and Emily for 9 days and I miss them so much. Can't believe I have to spend another week without them. Why is it that life can be so cruel and so hard. I will keep you posted on our week here and please pray that Julia finishes her treatment as scheduled and we get home. Nadia