tag:blogger.com,1999:blog-15518546465775036402023-11-16T03:16:15.312-08:00Born to be strongA place to get updates, see pictures and help a beautiful little girl and her family.Idahttp://www.blogger.com/profile/12100865405448869213noreply@blogger.comBlogger143125tag:blogger.com,1999:blog-1551854646577503640.post-84887378377888220982015-06-16T11:16:00.001-07:002015-06-16T11:16:36.009-07:00New GO FUND ME CampaignHello friends and blog followers,<br />
<br />
I just wanted to quickly let everyone know that Nadia's cousin has started a Go Fund Me Campaign for Julia.<br />
<br />
The astronomical cost of being and staying in New York is taking it's toll financially as none of the medical procedures for Julia are covered.<br />
<br />
Please read more here, donate and share the campaign on Facebook and Twitter!<br />
<br />
<a href="http://www.gofundme.com/wxbwsw">http://www.gofundme.com/wxbwsw</a><br />
<br />
<br />
Thanks<br />
IdaIdahttp://www.blogger.com/profile/12100865405448869213noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-82375588497220361482015-04-02T05:57:00.001-07:002015-04-02T05:57:07.553-07:00April 2, 2015<div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Hello Everyone</span></div><div><br></div><div>I want to start by thanking you all again for your amazing support and your words of encouragement. </div><div><br></div><div>It's been a crazy month as usual. Julia's biopsy had suspicious rare EBV cells in it but unfortunately the sample was too small to actually stage the disease. Yes.....that's not a typo. Unbelievable after putting her through that terrible procedure, which came at a high cost, the sample was not big enough. Now discussions are happening about repeating the biopsy. </div><div><br></div><div>Julia is scheduled for a heart biopsy, angio, and heart stress test on April 17th. We will be coming back to Toronto to have that done. I'm looking forward to coming home even if just for a little. It's been 9 months in NY without emily and anthony and I miss them so much. </div><div><br></div><div>We are really having a hard time making decisions and don't know what to do anymore. We know that Julia is not in remission but all agree that she's been well and remained stable. Her disease is low grade and stable at this point. She has gone 14 months with no chemo, which is the longest she's ever gone. And we don't want to risk changing that. </div><div><br></div><div>Unfortunately Julia's cells are not growing at the speed the doctors would expect in the lab so it will be a little longer till they are ready for use. </div><div><br></div><div>Today Julia was suppose to have her cell infusion but unfortunately spiked a fever and looks like she may have an infection. She was restarted on IV antibiotics and we will reassess things on Friday......never a dull moment!</div><div><br></div><div>I will keep you all posted on Julia's progress and heart biopsy results. </div><div><br></div><div>Nadia </div>Idahttp://www.blogger.com/profile/12100865405448869213noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-90016586294424940512015-03-02T19:36:00.001-08:002015-03-02T19:36:53.880-08:00March 2, 2015<div>Dear family and friends</div><div><br></div><div>It has been an incredibly hard month for our family. On February 1st we suffered a tragic and devastating loss. My father in law passed away very unexpectedly. We are heartbroken and still in shock. We will miss him dearly and will remember him in our hearts forever. </div><div><br></div><div>On top of that it has been a rough month for Julia. She has been sick with multiple infections and requiring daily IV antibiotics. She had an admission last week for high fevers and pain. She had a CT of her head and a full body PET scan. Her head CT showed something in her sinuses and the PET was pretty much unchanged from her last. She went to the OR today and had a biopsy done of her sinuses and a ear and sinus wash. Now we wait 10 days for pathology to see what's going on. More waiting...........</div><div><br></div><div>No matter how any times she goes to the OR it never gets easier. It is so hard to see her so scared and have to say goodbye not knowing what will happen. Then watching her in recovery so drugged and so out of it. She was so scared when she woke up and she had no idea where she was and what happened to her. Breaks my heart. I wish I could take all her pain away. </div><div><br></div><div>She has not been herself lately and seems very sad and clinically weaker than before. I pray everyday that it is the infections effecting her and not the cancer. But as we all know things are out of my hands and I feel so helpless. We have fought so hard and made so many sacrifices and still we have no control. We are just trying to save our little girl and we are constantly having to overcome obstacles. When will she/we just catch a break. </div><div><br></div><div>It's now been 8 months since we've been in NY and as each day passes I feel more and more that we will never get home. It is so hard as I want to go home but feel like this is where Julia needs to be. I miss Anthony and emily so much and our family has been apart for so long. I don't even know where we belong anymore. We are feeling the costs of being in NY more than ever and it is taking its toll financially. </div><div><br></div><div>In a positive note Julia's own cell line is potentially a month away from being ready. If you remember, we have tried for years to grow Julia's own cells but the attempts have always failed. Well for the first time in 3 years Sloan was able to grow her B cells which is the first (and harder) part of the process. They finished collecting her blood last week and the T cells are now growing in the lab. If all goes as planned Julia could be getting her own cells shortly, which is what we've wanted from the beginning. Research shows that getting ones own cells as oppose to third party works better, lasts longer, and reduces the graft vs host disease. We believe Julia has been experiencing a little graft vs host from my cells as her skin is breaking out in rashes. We are very excited for this and hope this is the cure we've been searching so long and hard for. </div><div><br></div><div>I will keep you posted when I have biopsy results. </div><div><br></div><div>Once again, I thank all of you for your continued prayers and support </div><div><br></div><div>Sincerely</div><div>Nadia</div>Idahttp://www.blogger.com/profile/12100865405448869213noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-84543311852352760732015-02-06T13:39:00.001-08:002015-02-06T13:39:26.630-08:00Update February 6, 2015<div>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.</div><div>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. </div><div>Thank you for all your continued support. </div><div>Nadia</div><div><br></div>Idahttp://www.blogger.com/profile/12100865405448869213noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-64275788674638534052014-02-26T06:38:00.002-08:002014-02-26T06:38:56.982-08:00FINALLY..........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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-68277573445180416812014-02-10T09:25:00.000-08:002014-02-10T09:25:04.047-08:00Julia in the ORHi 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-4731959060525255912014-02-06T06:45:00.003-08:002014-02-06T06:45:44.029-08:00Scan ResultsI 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.........
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-18919707534512994152014-01-22T10:18:00.000-08:002014-01-22T10:21:29.116-08:00UpdateHi 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.</strike> Maryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-1489254283514653922013-11-27T08:08:00.003-08:002013-11-27T08:08:56.288-08:00Very long overdue updateHello 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-13680399671511700852013-06-16T15:37:00.000-07:002013-06-16T15:55:41.034-07:00UpdateAs 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. Maryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com1tag:blogger.com,1999:blog-1551854646577503640.post-44683042392306155092013-06-04T07:31:00.001-07:002013-06-04T07:31:50.592-07:00Facebook GroupHello friends,<br />
<br />
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.<br />
<br />
If you would kindly re-like the page, it can now be found here - <a href="https://www.facebook.com/LetsHelpJulia">https://www.facebook.com/LetsHelpJulia</a><br />
<br />
Thanks so much for your continued support.<br />
<br />
IdaIdahttp://www.blogger.com/profile/12100865405448869213noreply@blogger.com3tag:blogger.com,1999:blog-1551854646577503640.post-84549840573144226462013-05-15T15:43:00.000-07:002013-05-15T15:43:52.709-07:00UpdateHi 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com2tag:blogger.com,1999:blog-1551854646577503640.post-6386234761222433272013-04-27T17:40:00.001-07:002013-04-27T17:40:14.701-07:00UpdateHi 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com1tag:blogger.com,1999:blog-1551854646577503640.post-47567875090893296562013-03-29T10:59:00.002-07:002013-03-29T11:01:59.676-07:00Happy 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 Maryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com12tag:blogger.com,1999:blog-1551854646577503640.post-80236901558116209342013-02-15T07:53:00.001-08:002013-02-15T07:53:39.381-08:00Home Sweet HomeHi 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com9tag:blogger.com,1999:blog-1551854646577503640.post-78330243146135871802013-02-12T09:08:00.001-08:002013-02-12T09:09:56.557-08:00More 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com1tag:blogger.com,1999:blog-1551854646577503640.post-35302566768884246742013-02-10T09:28:00.001-08:002013-02-10T09:28:43.464-08:00Change in plans......againHi 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com2tag:blogger.com,1999:blog-1551854646577503640.post-87481170901738389872013-02-05T12:02:00.000-08:002013-02-05T12:02:10.393-08:00Update from New YorkHi 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-46181227009589389282013-01-31T11:36:00.002-08:002013-01-31T11:36:06.327-08:00More bad news from NYJulia 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com81tag:blogger.com,1999:blog-1551854646577503640.post-66615703288043394862013-01-29T14:41:00.001-08:002013-01-29T14:45:28.665-08:00More drama.......even in NYCHi 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
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-6268716232461547992013-01-23T15:59:00.003-08:002013-01-23T16:04:08.378-08:00Update from NYHi 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
Maryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com63tag:blogger.com,1999:blog-1551854646577503640.post-37183550780561385622013-01-05T20:04:00.001-08:002013-01-05T20:04:33.439-08:00Julia admitted to Sick Kids -NY treatment cancelledJulia 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.
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com16tag:blogger.com,1999:blog-1551854646577503640.post-18980504072756266492012-12-24T10:19:00.002-08:002012-12-24T10:19:10.712-08:00Happy HolidaysWanted to let you all know that Julia is home for Christmas and is feeling well despite the ups and downs. She started an oral like chemo this week and we were all worried how it would effect her but so far she is holding her own. Yesterday we had a surprise visit from some of the guys from Hockey with Heart. They came to give the kids some gifts and wish them a Happy Holidays. The kids were so happy and grateful for the visit. We thank them so much for thinking of us and their generosity.
We are off to NY on Jan 6th for another cell infusion. I will keep you all posted on how it goes.
We want to take this opportunity to thank everyone who has supported us through this difficult year. Your thoughts, prayers, and financial support has helped us more than words can describe.
We wish you all a healthy, happy holidays and a great start to the new year.
Sincerely,
The Morreale FamilyMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-45946908101890608642012-11-29T05:11:00.003-08:002012-11-29T05:11:33.904-08:00Long Overdue UpdateDear Family and Friends
I deeply apologize for not updating the blog sooner but the last few months have been very crazy. We returned from our final infusion in NY on September 11th and Julia was admitted to Sick Kids on September 12th for fevers. She has spent most of her time in hospital up to 10 days ago. She was in hospital most of September and October with unexplained fevers and once on antibiotics the fever would go away. Once we would discontinue antibiotics the fever would come back. Until the end of October when things got very bad very quickly. She had high fevers, severe headaches, and vomiting. As they increased and changed to stronger antibiotics Julia just got sicker. Finally she went to the OR for a bone marrow biopsy and lumbar puncture. A couple hours later doctors showed up at our door with the results......Julia's bone marrow and spinal fluid (central nervous system) was full of the EBV virus. She had EBV induced meningitis. She immediatly started cytotoxic drugs that day to control the infection which was now in her brain. She started experiencing extreme rage and halusinations. She was immediatley brought to MRI. Her MRI was fine and we treated her with drugs to keep her calm and sane. After a few days on the cytotoxic drugs things slowly started to turn around. Through this all we were in talks with NY trying to figure out if this was an adverse effect to the cells she has been getting. Unfortunately, there were no clear answers. Sick Kids and NY ran multiple tests on Julia (and even me) to see if my dna was in Julia and she was rejecting my cells. Unfortunately with clinical trials there really are no clear answers. NY had never seen this happen but we all agreed that Julia could be the first. After putting all the tests together and her clinical improvment it was determined that is unlikely due to cells but once again no one could be sure. Also no one could explain why this happened and how the EBV got into her central nervous sysem and bone marrow. We spent a few days waiting to find out if the cells they were seeing were the cancer (the wait was torture), it was determined that the cells had not yet turned into PTLD and were only at the EBV disease stage. Julia came home 10 days ago and continues to get her cytotoxic drugs at home with home care. She is feeling much better and almost back to herself. NY would like us back there for more treatment although our doctor at Sick Kids isn't quite comfortable. It was decided that Julia was not stable enough to travel to NY at this time. I just found out yesterday that Julia will return to NY for more cells in the beginning of January. Although if she gets sick again after cells our doctor will pull the plug on cell therapy.
Another year that Julia has been unable to go to school. She is starting home school today and is excited about that. I feel so bad for her that she has spent the last 4 years missing out on everything a 7 year old should experience. She is extremely frustrated staying home and all the meds she is hooked up to throughtout the day and night. She has 2 more weeks of meds and then hopefully she can be free of them for Christmas. We continue to go to the hosptial weekly for clinic and yesterday all her bloodwork was stable. Counts are a little low but expected on this chemo like drug she is getting.
Anthony and Emily have had a hard few months as they have been passed around a lot the last few months. I have not been here for them at all this year. I missed Emily's first day of school and have spent much of the school year in the hospital with Julia. I can only pray that we will catch a break soon and be able to live somewhat of a "normal" life soon. I look forward to spending the Christmas break with all my kids.
As much as I have tryed to remain strong throughtout the years this last admission had me totally scared, overwhelmed and defeated. We have lost many kids to this nasty disease called cancer in the last few months and this has made the last few months even harder. I am extremely tired, frustrated, and so worried about what the future holds. I apologize to all who have tried to contact me the last few months but I really just needed some time alone and was really in no mood to talk. I am re grouping now and as always ready to take on the next challenge head on. I am so grateful that Julia is so tough. No matter how down she is or how bad things get she is a fighter. A doctor yesterday told her she had 9 lives. She is one tough kid.
Thanks again to all of you for your continued support. We apprecaited it more than words can say.
Sincerely,
NadiaMaryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0tag:blogger.com,1999:blog-1551854646577503640.post-80133850283083657392012-08-25T11:20:00.003-07:002012-08-25T11:20:30.020-07:00Back to NYC........Hi Everyone,
I apologize for not updating sooner as many of you have been wondering whats going on. We have finally had the opportunity to discuss biopsy results and future plans with both NY and Toronto and everyone agrees that Julia is un unchartered territories and there are no "right" or "wrong" answers. There were many opinions going back and forth and the decision lied very heavily with us (which has made things very difficult). On Thursday it was decided that we will be heading back to NY for another cycle of cell therapy and then will move directly to a maintenence schedule. Therefore we are leaving on Monday for 3 weeks of cell therapy and then Julia will return every 8 weeks for 1 infusion. We will do this for 1 year if things remain well. We have also decided to attempt lowering Julia's immunosuppression in the hopes of helping her immune system. We have reduced her meds and will watch things closely (since history has shown that Julia rejects her heart), and biopsy her in early to mid October.
Julia has remained well and enjoyed her summer. Unfortunately cell therapy is starting at the same time as school so once again she will be missing a little bit of school.
At this point both Elio and I are emotionally exhausted with the ups and downs and getting really tired of hospital appointments, living in fear, and the unknown. I am having a hard time going back to NY and feel really nervous this time. Its so hard to know if we are making the right decision given that she's been well. The only thing that I was sure of is if I decided not to try more treatment right now and than Julia got sick I could not live with myself knowing that she is not in remission. The weight of Julia's future lying in my hands has been overwhelming. I'm so use to doctors telling us what needs to be done (and even though not always liking it), and we do it. This time no one knows what to do and I've had to make the decisions. Thankfully we have an unbelievably supportive oncologist who is always there for us.
I will keep you all posted on how treatment in NY goes but for now please pray that Julia gets through this treatment with no surprises.
Thanks again for all the support.
Nadia Maryhttp://www.blogger.com/profile/01536485944920435641noreply@blogger.com0