Update

As 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.