Very long overdue update

Hello everyone, I deeply apologize for my absence on this blog. Things have not been easy and really couldn't come to terms with what's been going on. I am currently updating you from Sloan Kettering in NY so I will try and fill you in. The best I can with limited time. In my last post Julia started an antibody/chemo for the concern seen in her stomach. We completed 4weeks of treatment and began more treatments in NY the beginning of July. Upon return from NY at the end of July Julia became very sick. She was admitted and re scanned. The scan showed worsening of the mass in her stomach and given its location the surgeons told us she had a 40 percent chance of bleeding to death on the operating table if we tried to biopsy the mass. We decided not to go ahead and Julia started more intense chemo immediately. She did not do well with the first cycle and was quite unwell. As always she pushed through it, like the champ she is. Se just finished 4 rounds of chemo and once again we have restarted treatments in NY. Julia has had 2of her 3 infusions and we will be back home Dec 4th. I have a big meeting with our NY doc and our TO doc Friday as we discuss treatments going forward. I need to mention the fundraiser put on Saturday by San Antonio Fish Market. It was an awesome event and Julia enjoyed herself so much. Thank you. I also need to mention this amazing lady I met at the hairdresser on Saturday. A regular person like you and I who heard Julia's story and has gone above and beyond to try and help. You know who you are and we thank you. We are forever grateful for you help. On a sad note, I need to talk about a little girl who lost her battle last week. This little girl and Julia have been through their journey's together (heart transplant and PTLD). Very unexpectedly she passed away last week and I am still in shock by the events. This little girl was the most precious, strongest, bravest little girl. She fought so hard and never complained. She will be in our hearts forever. We pray for the family as they face the most difficult days ahead. I am absolutely devastated by this loss. The doctors are ready for us so I have to cut this short. I promise to keep you posted as soon as I can. Once again thanks to everyone for your love and support. Nadia

Update

As many of you know Julia was back in hospital and we have started chemo. Julia had her PET scan on May 30th. Her oncologist called me that night to go over results. The scan showed some improvement in some areas but the stomach was showing major concern. Julia's doc had trouble coming up with a plan. She strongly felt the need for a biopsy as we discussed that although scan was pointing to progression of disease in the stomach Julia was clinically well. I think we both spoke too soon......that night Julia spiked a high fever and was admitted to hospital. She was started on IV antibiotics until cultures came back. An X-ray was done which showed some inflammation in the lungs. The surgeons came to see us and told us that in order to biopsy the node they would have to do an open biopsy and it was still dangerous because of the location of the node. In the following days Julia became very sick and unstable. She was breathing fast, heavy, and working hard. Her bloodwork showed that her blood had become acidiotic and she required a bolus of bicarbonate and a blood transfusion to try and stabilize her breathing. Then she started to complain of stomach pain so was sent for an ultrasound and it showed that the lymph node in her stomach had doubled in size in just a week. Secondly, her EBV titres showed that she has 2,000,000 (yes 2 million its not a typo),infected cells. With everything that was going on doctors decided to start chemo immediately. She is on a cytotoxic drug to try and bring down her infected EBV cells and a chemo like drug to wipe out all her B cells. She got her fist dose last Friday and of course......had a reaction to the chemo. See started shaking and spiked a fever about 30 minutes into the 6 hour infusion. Doctors had to stop immediately and give her more pre-meds and then we had to push through. The infusion took almost 12 hours. Obviously we missed our trip to NY....not one but two times. She was finally released on Wednesday and receiving some drugs IV at home. She has been re admitted to hospital today for her second dose of chemo tomorrow. Her counts have dropped quickly and is once again neutropenic. She will have a repeat ultrasound on Tuesday to check the size of her lymph nodes. If things are better or at least stable we will leave for NY at the end of the week or beginning of next week. As you can imagine we are devastated by the latest set back. This is once again tearing apart our family. Anthony is devastated and having a very hard time being away from me. I have been in a little bubble and not talking to many people and I apologize. I know how many of you care but at this time I am consumed with Julia's current situation and trying to figure out how we are going to save our daughters life. I promise I will keep you all updated. I ask that you all pray for Julia as she once again battles.

Facebook Group

Hello friends,

As you know there have been many changes to Facebook over the years. We had created a Facebook group to keep everyone up to date and informed of what was going on with Julia. Unfortunately that page was removed and recreated as just a plain page. In doing so all followers were dropped from the group.

If you would kindly re-like the page, it can now be found here - https://www.facebook.com/LetsHelpJulia

Thanks so much for your continued support.

Ida

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