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

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

More bad news from NY

Julia has been admitted to hospital in NY. Her blood cultures from yesterday were positive. We are still waiting for exact infection but we know she has an infection in her blood. Cells have obviously been cancelled for tomorrow until we clear up the infection. At this point I don't know how long we will be in hospital but I do know they have her on heavy duty antibiotics. I feel so lost here in NY. Will keep you all updated as I know more. Nadia

More drama.......even in NYC

Hi Everyone, On Sunday Julia started complaining that her ear was hurting. Yesterday it started draining thick yellowish fluid. We arrived at Sloan Kettering this morning for cells and after blood work, and vitals the doctor decided to cancel cells for today and postpone them till tomorrow. She wanted Julia to get at least 1 day of antibiotics just to be safe. They also did some viral and bacterial swabs to rule out anything else. Well, about half an hour ago I got a call from our nurse at Sloan.......Julia's nasal swab is positive for RSV (a very serious, potentially life threatening respiratory virus). For those of you who recall this is the virus that was believed to have attacked her heart when she was 6 months old. She will be going into hospital and getting an anti viral infusion to boost her immune system in order to help her fight this virus. Obviously, cells have been postponed till Friday (depending on how she is doing). Which means next weeks cells have also been pushed back. They have asked me to cancel my flight home until further notice. So looks like we will not be returning on Feb 5th as planned. As of right now Julia is feeling fine......now I'm a nervous wreck just waiting for the ball to drop. Sorry for the short update but I'm a nervous wreck and full of worry right now. I will update you as I know more....I promise Nadia

Update from NY

Hi Everyone, Sorry for the delay in updating you all but the blog was down and I could not post. Julia's LP she had showed that once again she has EBV in her central nervous system. No one (Toronto or NY) could understand why this was happening. The 2 options were to start cytotoxic drugs ASAP or get to NY for cells. Our oncologist (who is the best doctor ever), decided to give Julia the benefit of the doubt and repeat the LP one week later. Her repeat LP still showed a high white count (meaning something was still going on), but it had significantly reduced. So the decision was made to hold off on more chemo drugs and go to NY. We needed to wait 7 days before we could fly so we departed for NY on Monday Jan 21st (my moms birthday - this is 2 years in a row my mom spends her birthday here). Julia got her 1st infusion today and will get another next week and the week after. So far so good......Julia feels good and is back to herself. She spent the whole day at Sloan Kettering doing blood work, exams, cell infusion, and every hour vitals for 6 hours and she was awesome. NY is very puzzled by Julia's case. They have not seen cells last as long as Julia's are lasting. They also don't understand why she gets so sick and how she can pull through it by herself. Her nurse practitioner called her "one tough cookie". There is a major break out of the flu in NY and the Ronald McDonald house is under shutdown to the public. I'm a little nervous about this and hope Julia remains well while we are here. Today NY took some of my DNA and Julia's and will be running some high tech testing to see if my cells are in her central nervous system.....pretty cool. They expect to have these results next week. Julia's doctor here in NY is very anxious to get Julia onto maintenance, so after this cycle the plan is to move to 1 infusion every 8 weeks. On a different note I hear its super cold in Toronto so being here feels like fall! Please all keep Julia in your prayers for a successful and uneventful cycle. We'll see you when we are back and I will keep updating you all on how things are going. Nadia

Julia admitted to Sick Kids -NY treatment cancelled

Julia was admited to Sick Kids today for fevers. She is also having really bad headaches again. The fear is that she could have another infection in her central nervous system. She had a CT scan this afternoon and is scheduled to go to the OR tomorrow for a lumbar puncture. All this 24 hours before leaving for NY. Obviously we have had to cancel our trip for tomorrow. I guess better this happened today at home than tomorrow in NY. Well 2013 is proving to start out just like all the other years. I will keep you all posted on what's going on. Please keep Julia in your prayers. Nadia