Well home didn't last long. I feel like it was yesterday that I was writing the very same post. Julia is back in hospital and things are crazy as usual. Julia went home on Wednesday night and continued to be unwell. By Sunday we had to bring her back to emerge and she was once again admitted. Her counts continue to be non existent and she remains very tired and weak. One new thing (like we need anything else), is that her kidneys are not functioning as they should be. Her kidney counts are 4x what they should be and she seems to be having some metabolic issues with her electrolytes. Looks like her body is producing too much acid. I had a long talk with her oncologist today and the doctors are completely baffled and admit they are missing something but what is it. It is not from lack of trying. They are working around the clock, consulting other doctors, dotting all their i's and crossing all their t's but are still scratching their heads. So the time has come to start searching. Julia will go into the OR under general anesthetic tomorrow for a bone marrow biopsy and a lumbar puncture (to check spinal fluid). They will look for disease, viral infections that could be suppressing the bone marrow, and a few other complicated things. This will be a brutal day as Julia does not always do well with anesthetic. These days are extremely heart breaking and emotional for me as I bring her into the OR and hand her over to the doctors as I watch them drug her to sleep as she screams and cries begging me not to let them hurt her. I give her a kiss good bye not knowing what will happen when I'm gone. Then I wait in the halls pacing and praying until they come out.........torture. After that she needs to have her CT that doctors were trying to avoid due to the excess exposure to radiation. The problem is she can't have the CT until her kidney counts come back to normal because they use contrast for the scan that is hard on the kidneys. We have involved Neuphrology (another team) to help guide us with the kidney problems. They have ordered a whole bunch of tests one which will include a special function test with nuclear medicine. And after all that she is booked to have a heart biopsy on October 21st. This poor kid has endured more visits to the OR in 6 years than we will in a lifetime. Julia also refuses to eat so we have started her on TPN (nutrition in a bag through her PICC line.....yum), as she has lost almost 2kg.
We spent yet another holiday in the hospital (Thanksgiving) but even though things are a mess right now I found myself thankful for a lot of things......Julia's strength, my other healthy kids, my friends and family, the wonderful team of doctors we have, the incredible support and kindness from all of you, and of course Julia and much more. So even in the worst of situations there are always things to be thankful for.
As you can imagine things are very busy, stressful and frustrating right now. Many of you have watched me go through this so many times before so you know I am completely emotional and physically exhausted right now and can't say much more than I have. I will update you all as I know more.
One thing I do want to mention is the benefit concert that is being held for Julia at Markham Theater on October 20th @ 7:30pm. There are so many wonderful people working so hard for this event and unfortunately with being in here I haven't been able to help much or talk to all of you about it. So I am letting you all know that the tickets are now on sale through The Markham Theater and we would love to see you all their to support Julia. Many, many thanks to all the people involved in this event. Your hard work, dedication, kindness, and generosity are very much appreciated and we are forever grateful for what you are doing for our family.