Scan Results

I will start by saying that Julia has been relatively well. She had a short admission this week for unexplained fevers, and a visit to emerge last week for fevers but overall remains strong. Unfortunately her scan is another thing. I wish more than anything I could share some good news...........but I can't. Julia had her CT scan on Monday and shockingly it is showing a very large mass in her lower abdomen. A completely different spot than her disease back in July. The mass is quite big and doctors are concerned. We are currently waiting for the surgeons to comment on how safe it will be to biopsy. At this point a biopsy is much needed in order to direct our team on treatment options. If you recall in July we did not go ahead with the biopsy as it was too dangerous so our teams treated the disease blindly without knowing exactly what they were dealing with. This time they really need to know what's going on as they find it strange that the disease keeps appearing and disappearing in different spots. The mass is in a difficult area which is surrounded by many vessels and arteries so Julia's oncologist predicts it will be a difficult biopsy but we will wait for the surgeons to way in. Even if it is a difficult biopsy I think we will be pushed a little harder than last time to go after it. As you can imagine we are devastated by the results and worried sick. All the discussions about maintenance treatment or treatments in Israel are obviously on hold with the latest news. I will keep you all posted on the next steps......... Nadia

Update

Hi Everyone, I hope you all had a wonderful holidays. I apologize for not updating sooner and I know a lot of you are wondering what's going on.......I'm sorry. There has been a lot going on and I don't even know where to start but I will try. The last I updated I was in NY for treatment. Julia ended up getting sick in NY and required admission at Sloan Kettering. We were not able to come home as scheduled and ended up there an extra week. After discussions with our doctor here and in NY it has been recommended that we start Julia on oral chemo in an attempt to keep her in remission. The idea is to add this maintenance chemo to cell therapy. As this is not an attempt at cure but rather management we started exploring alternatives. We found a doctor in Israel who has some options for Julia in attempt to cure her for good. Unfortunately these are quite "out of the box" options. Just before the holidays we had a couple of calls with this doctor in Israel and are trying to figure out what to do. Unfortunately Sick Kids is not able/willing to do his recommended treatments here. We are waiting to hear from Sloan if they would be willing to try his treatments. If not, Elio and I have a big decision to make. The treatment in Israel is not a guarantee and comes with risk, not to mention high costs. Our oncologist has gone above and beyond to research and get feedback from the medical community. Unfortunately because this doctor in. Israel does not publish his work and this is a fee for service centre no one on our team or in our hospital will give us their blessing. This is a decision that Elio and I will need to make on our own. Our team will support whatever decision we make but can not give us any recommendations. This is making things so incredibly hard. What is the right thing to do for Julia? I look at her right now and she looks so good so how do I embark on a risky procedure that May or may not work. Especially in a place that is so far away and so foreign to me. Julia and I would need to travel to Israel for the treatment and I don't know if I'm strong enough for this. This is by far the hardest most important decision I have ever been faced with and quite frankly I have no idea what to do. I have said all along I will do anything, at any cost to save Julia, and I don't ever want to have any regrets, but this is too much right now. I don't know how we will make this decision. Unfortunately there are not many options available and our team is exploring anything and everything but we are in uncharted territory. I trust our team more than anyone.....so what do I do????? On top of everything going on. Julia had a routine heart biopsy on Dec 6th as a follow up to finishing chemo. As a shock to all of us her biopsy is showing rejection. Given the PTLD Julia's heart doctor felt like treating the rejection at this point would only make things worse. So it was decided we would watch her closely and she will repeat the biopsy on Feb 14th. Given the rejection, this makes things even more difficult deciding on the treatments in Israel. Julia will have a CT scan next week to access the situation and have a baseline before starting oral chemo. As you can imagine we are extremely nervous about this scan. At this point Elio and I are extremely stressed out, worried, and terrified to make the wrong decision. For the first time in this long journey I am so lost, so tired, so unsure. Part of me wants to close my eyes and just escape. I look at Julia so well right now and I just want to ignore the what ifs or what next and live in the moment. I am really struggling right now with the whole situation. I thank all of you for your unbelievable support and apologize for "disappearing" sometimes but I need to figure things out right now. I promise I will keep you all updated on the next steps.

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