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
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