Hello friends and blog followers,
I just wanted to quickly let everyone know that Nadia's cousin has started a Go Fund Me Campaign for Julia.
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.
Please read more here, donate and share the campaign on Facebook and Twitter!
Thursday, April 2, 2015
I want to start by thanking you all again for your amazing support and your words of encouragement.
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.
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.
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.
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.
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!
I will keep you all posted on Julia's progress and heart biopsy results.
Monday, March 2, 2015
Dear family and friends
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.
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...........
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.
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.
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.
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.
I will keep you posted when I have biopsy results.
Once again, I thank all of you for your continued prayers and support
Friday, 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.