I’ve been wanting to write to you all for so long to explain what is happening with Julia, but I honestly have extreme difficulty putting it into words the challenges we are facing.
As some of you already know Julia has had a challenging year. She has been in and out of hospital many times with numerous illnesses. She has been unwell a lot over the last year.
Unfortunately, Julia got sick on April 16th, 2009 and we were once again admitted to the hospital. We were admitted with what doctors believed to be a gastro infection. A week after admission she still was not well clinically. Her blood counts started dropping and she required her first blood transfusion since transplant. One week after that she was getting sicker and needed another transfusion. A specific blood test was run which showed abnormalities in her T cells which had doctors believing she may have a T-cell Lymphoma (a deadly type of cancer, which has a very poor outcome). Within 2 days she was sent to the OR and underwent a tonsillectomy, bone marrow aspirate and biopsy, a gut and colon biopsy and had her adenoids removed. The week after she went back to the OR and had a PICC line (permanent line) inserted into her left arm. She then had a PET scan (a high tech scan that looks for potential cancer cells).
After waiting almost 4 weeks with no answers, Elio and I had convinced ourselves that there was nothing wrong, and the doctors were fishing once again.
On May 13th (my Dad’s birthday), at 3:00pm a team showed up at our room to inform us that Julia’s pathology report of her tonsils and adenoids were positive for PTLD and that her PET scan showed some increased suspicion from prior scans. The good news is that it is B-cell driven and not the T-cell Lymphoma they first suspected. 95% of transplant kids that develop PTLD have B-cell driven PTLD. It is more common, has better treatment options, and better success with complete remission. That night we were transferred from the Cardiac Ward to the Oncology Ward.
On May 14th Julia began her 1st Cycle of Chemotherapy. Julia’s protocol is a new protocol (phase 2 of trial) which is showing promising results. It consists of 6 cycles each lasting 21 days and combines 2 different chemo drugs. She will be re scanned after Cycle 2 to determine how well the treatment is working. God willing she has a clean scan she will not be re tested until the end of her 6 cycles. She is also receiving an anti viral IV med 2x day at home administered by her home care nurse.
Julia finally came home on May 26th (Elio’s birthday and the same day she was discharged after her heart transplant in 2006), and in the last couple of days she is feeling better and is more active.
We were back at the hospital today for her chemo treatment and she did amazing. She will need to go to the hospital on Tuesdays and Thursdays for treatment for the next 4 months. She is a very strong little girl, and watching her today coloring and making necklaces while receiving her chemo was inspiring.
We are very grateful to those who have donated money and/or taken the time to communicate their thoughts, good wishes, and prayers. Most people are not quite sure what to say at a time like this, but the moral support is most appreciated and welcomed. I am sorry for not being in touch regularly; I am consumed with Julia’s care and don’t often have the time.