Update February 6, 2015

I apologize for being absent from the blog for such a long time. It has been a very crazy 8 months and so much has happened. As I lasts reported Julia began oral chemo as a maintenance in hopes of keeping her stable. The oral chemo was not great for Julia. Multiple infections, low counts, and reduced energy. We had to go on and off do to count issues and were not even at 50% of full dose. This went on till May with multiple admission. In May Julia was admitted with fevers and low counts. During that admission her EBV titres sky rocketed to 365,000. It was obvious that chemo was not going to work and we were out of options at Sick Kids so we began talks with New York. New York agreed to take Julia on and come up with a Maintenon protocol that would keep her in remission. The only catch......they wanted full control of her care and we needed to commit to 6 months of care. With no other real options and the fear that Julia would relapse within weeks Julia and I left for NY. We agreed to temporarily move to NY for treatment. Julia began weekly cell infusions immediately with a new unknown donor. At the end of June Elio, Anthony and Emily joined us. Imagine how fun it was the 5 of us in a small little room at Ronald McDonald House! The kids had a wonderful summer and we did get to spend quality time together. There were a few minor bumps for Julia and an admission but overall things seemed well. She had her forest scan here in August and it was good - no sign of disease. By the end of August it was time for the other kids to head home to begin school. It was so hard to say goodbye and I miss them so much. A few weeks ago Julia got very sick with multiple serious infections (including Pnemonia). During the admission things were getting worse instead of better and doctors were concerned. Within 3 days Julia had a PET/CT, a bone marrow biopsy and lumbar puncture, and went to the OR for a lymph node biopsy. It was such a stressful weak, it was really the first time she had been so sick here and now we were forced to do all these invasive things in a new place. Thankfully Julia started recovering and was well enough to be discharged. As we waited patiently for biopsy results we watched as Julia got better and better each day. Unfortunately Julia's biopsy is showing disease. It is unlike her other biopsies and doctors in NY are running some very specialized tests on the lymph node. The good thing is that julia is feeling well. We immediately changed donors (back to my cells) and began cell infusions again. At this point since Julia is well we will keep to this plan until all results are back. There are some options to give additional cells with different targeting agents in addition to the cells she is getting. There is also a new drug which is showing promising results but Julia must qualify for it, and even if she qualifies then we need special permission from the drug company to use it. It has now been 4 months we have been here and I am extremely home sick, tired, frustrated, worried and scared. I miss Anthony and Emily so much and constantly living around sadness is getting to me.

I really do apologize for not updating sooner but I am just trying to keep my head above water. And after 5.5 years I don't even know what to say anymore. 

Thank you for all your continued support. 

Nadia

FINALLY..........

After almost 5 years I am happy to finally report some good news from the start. Julia's biopsy results were much better than anyone expected. The final report is that it is showing "early,early disease". The doctors are happy with this and calling this a good biopsy result. Julia also had her follow up heart biopsy and that too was good. The rejection is gone. Julia's doctor has registered her into a clinical trial in Texas. We are just working out the details but it looks like we will head to Texas to start more advanced cell therapy. Texas will attempt to grow Julia's own cells and this will take a couple months so in the mean time Julia will begin oral chemo. Julia is well and has been able to attend school which makes her so happy. It's been a long, hard, stressful road and despite the good news I am extremely stressed out on the next steps. I keep telling myself everyday to just take a step back and enjoy Julia being well right now, but that's a lot easier said then done. We are so so lucky that we have the best oncologist ever. She is so kind, dedicated, and has done so much for Julia. I want to thank all of you for your support and encouraging words. I will keep you posted on the next steps as I know more. Nadia

Julia in the OR

Hi Everyone, on Friday I got a call from the surgeon that Julia would have a biopsy done today on the mass in her lower abdomen. At 11:43am Julia was brought into the OR. The procedure will take approx 3 hrs and she will need to stay in hospital to recover. Julia bravely walked into the OR with Elio and asked for her sleepy medicine. She is our rock, our champ, our hero. Results will take up to 10 days and I will let you all know when they are in. Please pray that all goes well and Julia has a speedy recovery. Nadia

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