Update

Hi Everyone,

I want to start by telling you all that Julia has improved clinically since starting treatment and she is feeling better. Her tummy is getting smaller, her fevers are finally gone, she's no longer in pain, and her counts are finally recovering. It's amazing that with only 2 weeks of treatment there's been such an improvement.

It's been a long, overwhelming and emotional 10 days. I will try my best to summarize what has happened and where we're going from here but my head is exploding so bare with me.

We had a big meeting with our Oncologist and social worker on Thursday. She told us that the pathology report from her neck lymph node biopsy has confirmed that the PTLD is back and that it is the same type and stage as the 2 previous times (this is good news, its not at a more aggressive stage). Given these pathology findings doctors assume that all the nodes that lite on PET (lungs, axila, groin and her spleen) have disease. Surprisingly the biopsy of her gut and colon did not find any evidence of PTLD. We are all confused and puzzled at this news, but we'll take it.

We have gone world wide in an effort to find options and have had an overwhelming response. Doctors from all over the world have responded with suggestions and ideas. Julia is the first kid at Sick Kids to suffer a 2nd relapse so there is no protocol for treatment, doctors are making one up. Doctors at Sloan Kettering Cancer Center in New York city have accepted Julia into their clinical trial. This is a trial in which they will give Julia donor T cell infusions in hopes that those T cells can fight the EBV and prevent the PTLD from coming back. The good thing is they will take her once she is in remission and use this experimental treatment as a preventative measure as oppose to using this as a treatment measure. The trial is 9-12 weeks with 3 weeks on treatment and 3 weeks off. The approx. cost we were told is $80,000 (assuming she is not sick and needing hospital admissions). At this point our doctors are recommending we go. They have no idea if this treatment will work but our doctors exact words to me were "if we don't try this, I think we will all look back and regret it". They are however recommending we go for 3 weeks of treatment and come back on the 3 weeks off. This will keep costs down and allow us to keep our Sick Kids team as our primary team and arrange tests and scans to be done here and shipped to New York. If we go for the full time we will lose our doctors here and have to find new doctors in New York. We have told our doctors to go ahead. We will go wherever they think is best for Julia. The next step is a video conference with New York this week or next. Then we will fly there for a consultation with the doctors running the trial. After that if everyone is happy we will be ready to go. They estimate that Julia will be ready to go to New York in 3-4 weeks. Because we have chosen to go to New York for trial we can not give intense chemotherapy so our doctor has decided to keep her on only this one drug we started and hopes she will be in remission after 4 weeks of treatment (that's 2 weeks away). If she is only in partial remission she will continue with another 4 weeks of treatments and than go to trial. If she doesn't respond by then doctors will be forced to give harder chemo. When going to trial the patient needs to go as healthy and strong as possible hence most trials will not take kids that have had too much toxicity from chemo so close to entering a trial. Our oncologist really believes that Julia will respond and achieve full remission with the 4 weeks of treatments. The problem is that this will most likely not be enough to keep her in remission for very long, so time is of the essence. This trial treatment is like flipping a coin. It's worked on some patients but not on others. Should the treatment in New York not work our doctors here do have back up plans. One being the 2 year chemo maintenance protocol that Leukemia patients follow after initial treatment. Another being continuing the drug she is currently getting maybe once every 3 months. These are all ideas that are being discussed and the scary part is no one knows which one to try or if they will work. We do not have the statistics in our favor right now. The only thing we have is hope, faith, prayers, and positivity. We need to remain optimistic and positive and take this one day at a time. Julia is an incredibly strong little girl and if anyone can do this its her.

There are a lot of things that need to be done and taken care of in the next few weeks and doctors are trying really hard to get Julia out of hospital this week so she can spend some time at home with her whole family before leaving. Our goal is to get her eating and drinking so we can have her home by mid week. She will return as an outpatient for the next 2 weeks of treatment. Our meeting talked a lot about quality of life and the teams here work hard to give that to all these children. It's important to all of us to have her be home and enjoy everyday life out of the hospital setting before leaving. Julia has no idea whats going on she just keeps saying shes going to New York City!

I would love to talk to each and every one of you but that just isn't possible. There's a lot to do and tons of stuff to sort out and most importantly I need to spend this time with my kids...all my kids together. I am emotional, frustrated, sad, angry, but most of all terrified. I am having a hard time keeping it together right now, and I really need to get it together and be strong for Julia.

Once again I thank all of you for your ongoing support and ask that you keep Julia in your prayers always.

Sincerely,
Nadia

Here We Go Again.................

Dear Family and Friends,

As most of you have already heard it is with great sadness that I inform you that Julia has relapsed again. This past week has been very intense and Julia has deteriorated very quickly. She continues to have high grade fevers, diarrhea, and her spleen is so big that her tummy is as big as Elio's! We have had to start giving her morphine for the pain.

On Tuesday she went to the OR to get her PICC line put in and all hell broke lose. When they extubated her (took the breathing tube out), she became very unstable. Her oxygen levels were extremely low and her respiration rates were 80 (20 - 30 are normal). It was complete chaos as doctors tried to stabilize her. There were 3 doctors, 5 nurses, the anesthesiologist, and the ICU team all in our 10x10 room. I have never felt so helpless and scared. She has improved but is still requiring a little bit of oxygen to help her. On Wednesday she had her PET/CT scan and by 5:00 our doctor was at our door with the terrible news. She sat down beside me and told me that the scan was very concerning and it looked like we were dealing with a relapse. The PET lite up in the neck, lungs, gut, and axillary. It also showed that there may be an infection going on in her lungs and this could be the reason for Tuesday's episode. We have increased the strength of her antibiotics in hope of getting rid of the infection. This morning Julia went into the OR for a gut biopsy, a colonoscopy, and to remove the lymphnodes in her neck. The procedure was about 3 hours and no matter how many times I wait in the waiting room it never gets easier. The procedures went well and she has remained stable. The doctors came to talk to us and informed us that the PTLD was seen in the colon. The gut and neck will have to wait for pathology reports. Since pathology can take up to 2 weeks and we don't have time to wait (because the disease has come on so quickly and aggressively), our doctor has decided to start some treatment as we wait for pathology results.

As this cancer is rare (only effecting transplant kids) the treatment options are limited and we don't have a defined protocol. At this point doctors are not sure what they will use to treat her. We are starting 1 chemo drug today (as I write this post),to stop progression of the cancer until pathology is back and they know exactly the degree of disease they are dealing with. This also allows doctors to consult other oncologists for suggestions. They have already contacted the UK and the US for advice and we are awaiting responses from both.

Our Oncologist just came to see us today to talk about what she's thinking right now. Her immediate goal is to get Julia in remission (which she doesn't see a problem with), the problem we face is the disease coming back. She has found a clinical trial in New York that Julia may qualify for so she is submitting a request today. She is still waiting to hear back from the UK and has contacted the European Oncology Board for suggestions. Whatever we decide it will require a maintenance or prophylaxis part once treatment is done. We may use the maintenance protocol that Leukemia patients use which is a 2 year protocol. Right now everything is still being worked out.

As I already knew the "talk" was coming I informed our doctor upfront that we need to go for cure and will not agree to palliative care. The complexity of what's going on is impossible for you all to understand and I do my best to keep you all informed without bombarding you with the medical terminology. I will say that we are in a very bad position and are fighting for life. The prognosis is poor and we need to do anything and everything we can to find options. Therefore I ask all of you to get the word out in hopes that somebody may know someone that can help. We are exploring all options and the more information and resources we have the better off we will be.

I want to express my gratitude to all of you for the overwhelming support, prayers, words of encouragement, food, etc. we have received. As you can imagine things are very busy here and we are in a touch and go position right now and until Julia is more stable I can not talk right now. I am an emotional mess and extremely distressed. Please know that it doesn't mean I don't appreciate all the messages but I can't possible reply (it would take me all day). When things are more stable I will be in contact.

For now, please please pray for my baby girl who is fighting for her life.

Sincerely,
Nadia

Quick Update

Hi Everyone,

It's been a really crazy week and I'm not really up for talking much about it. I know many of you are wondering what's going on so I will try and give you a brief update.

It is now day 12 of fevers and doctors still have no idea what the source of the fever is. We are on iv antibiotics and started anti-fungal meds, and still fevers. Infectious Disease is now involved trying to find the source. Some of the bone marrow results came in yesterday. It's showing that Julia's marrow is producing the cells but they are being destroyed in the peripheral blood. The million dollar questions is WHY? The next step is a PET/CT early next week to look for evidence of relapse, and than a gut biopsy after that. Julia's counts continue to be bottomed out and despite getting a blood transfusion last week we will likely need another transfusion tomorrow.

As the days go on its obvious everyone is thinking more and more about possible relapse. It's a sad and quite tone all around from everyone in here. This situation is all too familiar and I'm experiencing major deja vu. I refuse to give up and continue to be optimistic that this is all related to infection. And I will continue to believe that until told differently. Obviously I am an emotional wreck right now so I will be in contact when I pull myself together. I really do appreciate all the support and concern.

Sorry for the brief update and thanks for understanding. Please say a prayer for Julia as once again she is faced with challenges.

Sincerely,
Nadia

In Hospital Again.............

Hi Everyone,

I apologize for not updating you all sooner. I will start by letting you all know that Julia did get home the day of Anthony's communion. Although after only 2 days home she developed fevers again and was diagnosed with a really bad ear infection. She started high dose antibiotics for 10 days. During those 10 days she felt great. She finished her antibiotics on Friday and by Sunday the fevers returned. She was once again admitted to Sick Kids on Monday for fever neutropenia. She has 0 counts, and the medical staff is stomped. She has been really sick and out of it this admission and she is getting a blood transfusion as I write this post. We hope she perks up a little after her blood transfusion. Unlike other admissions all of Julia's blood counts are down, not only her neutrophils, but hemoglobin and platelets as well. This has me extremely worried. She is booked for a Bone Marrow Biopsy on Monday morning. Since this is now 5 days of fever they will begin a fungal workup which consists of CT scans. Julia's oncologist has been away so things are a little up in the air. The team on the ward isn't saying much (that's never a good sign). She is back tomorrow so I hope to have some clearer answers and a more concrete plan as to where we go from here.

I will keep you all posted when i can. Please like always keep Julia in your prayers.

Thanks
Nadia