Back At Sick Kids

Hi Everyone,

Julia is once again back at Sick Kids. In my last post I told you that she wasn't feeling well on Thursday and had spiked a fever Wednesday night after her biopsy. After speaking with her doctor it was decided that she should have cultures drawn and a CBC. So we arranged for the bloodwork to be done here at Markham Stouffville through her pediatrician. The office called with results and Julia's hemoglobin had dropped from 87 on Wednesday to only 71 (70 is transfusion). I immediately contacted her oncologist and as always she responded immediately. She agreed that this was a huge drop and gave me the option of going in to emerge or waiting till Friday morning and seeing her in clinic. I told her I was a little worried about the drop and the possibility that it could drop even further overnight. Her response "if your worried that's my cue to bring you in now, I'll call the fellow and let them know your on your way". So we packed a bag and off we went......thank god. When we got to emerge and rechecked her bloodwork her hemoglobin had dropped to 62 (down by almost 10 in 7 hrs). The panic began.......was she bleeding internally? Where was she losing this blood?). The doctor ordered blood and they transfused her immediately. The transfusion took 4 hours and I saw every minute of every hour all night. They re checked her blood as soon as the transfusion was done and her hemoglobin increased to 96. They rechecked it 2 more times that day and it was holding steady. ENT came to see her and confirmed that there was no way the procedure she had would drop her hemoglobin by that much that fast. They ordered an ultrasound of her belly and thankfully saw no blood or bleeding in her belly. What they did see was that her spleen is 2cm bigger than it was 2 weeks ago...........this could be big trouble.

Some good news...............Julia had a great day Friday and yesterday. After getting the blood transfusion she perked up and had tons of energy even ate a little. I haven't seen her feel this good in a long time. The hope was that they would let her go home yesterday but doctors did not agree with my plan. We will try and get a discharge today.

Its been a very very tough couple months as I watch Julia deteriorate with absolutely no answers. In the past she gets sick, we know why, we start treatment, and she gets better. This time its been watching her get sicker and weaker and have more issues each week with not being able to find out why. I am beyond frustrated and extremely worried about where things are headed. We can't get more than a week at home, and the worst part is that she develops new and different issues each time. I really feel like things are spinning out of control.

NY has confirmed that my cells are ready and have been frozen. They are waiting to hear from doctors here about Julia's EBV status. This week's EBV remains negative so we've bought ourselves at least another week. I told Julia's oncologist that I need her to stay negative until we figure out what is going on or at least she's feeling better and stronger. Can't imagine running into all these problems in NY. Wonder what a blood transfusion would cost there.....scary. We haven't even gotten there yet and you would not believe the stack of bills I've received for my cell donation....its absolutely crazy and makes me very thankful to live in Canada and have health care.

I am an emotional, nervous wreck right now and apologize for not responding to all your messages or being very brief in my responses. I need a little time to sort things out and most importantly need to have Julia home and feeling well.

I will keep you all posted on how she's doing and please keep her in your prayers.

Nadia