Update from Nadia

Julia’s fevers finally broke yesterday, and her blood cultures (which check for bacterial infection) continue to be negative. As mentioned in my last update doctors began a fungal workup yesterday to try and figure out what is going on. Although the fevers broke her counts continue to be bottomed out and she remains unwell.

This workup includes an anti fungal antibiotic (yes another one), an ultrasound of her abdomen, and a CT scan of her chest and head. She had her ultrasound this morning and her CT scan this afternoon. Shortly after the ultrasound the fellow came in our room and told us that her ultrasound showed thickening of the bowel walls, probably due to an infection. Therefore, she will have to be NPO (no food), and fed intravenously until the infection improves. She also needs to be put on yet another antibiotic to protect her bowels. We were scared but relieved that this was probably the reason for her being so unwell.

Then our oncologist (Dr. Punnett), came to see us around 5:30 tonight with some very disturbing news. I knew when she walked in the room it wasn’t good. She was teary eyed and very upset. She told us that the CT scan showed fluid in Julia’s lungs and some spots. Unfortunately they don’t know exactly what that means. We are expecting Infectious Diseases tomorrow to determine if the spots in her lungs are bacterial. Then just when we thought it couldn’t get any worse, she told us that the ultrasound showed a significant increase in the size of her lymph nodes in her stomach. She was shocked since we just had a PET/CT scan on June 19th and it was clear. She said she would never have expected to see such changes in 11 days. The real problem is figuring out if it is infection or the disease (PTLD). There is also the possibility that the spots on her lungs could be PTLD. At this point we have stopped our current chemo protocol and once again need to undergo investigation to see if there is progression of the PTLD. We will have a repeat ultrasound on Friday, another PET/CT scan next week, and possibly a biopsy of her gut. If this turns out to be PTLD we will have to start much more aggressive chemo. On top of all this we have been having difficulty maintaining Julia’s immunosuppressant levels for her heart. Therefore we will undergo a heart biopsy to be sure there is no rejection.

I can not begin to describe how difficult today has been. We feel like we have taken 10 steps back. We are in complete shock, disbelief, numb, and extremely terrified. The thought of having to spend another 3, 4, 5, or more weeks here, and being away from Anthony and Emily again is killing me. Being here day in and day out with constant IV medications being hooked up, doctors in and out, and Julia looking so sad is becoming too much for me to handle.

I apologize for communicating this information via the blog but I can not possibly discuss all the details with each of you. Despite the disappointing news we have to remain optimistic that these are all symptoms of infection, and we ask that you do the same. We also ask that you all say a prayer for Julia as she undergoes this next week of testing.

Thanks again for your ongoing support and I hope and pray that my next update will be good news.

Sincerely,

Nadia