My first week of H***

I have always been a pretty level headed person. I LOVE science and healthcare, usually the bloodier the better. Stuff like that has never really bothered me. I like to watch surgeries and I watch them draw blood from me. I've always felt that I could handle everything medically pretty well. Mentally I'm a pretty tough cookie. I remember sitting in the hospital bed with Lily the night she was admitted and we were talking to her pediatrician and they were telling us all the different things that it could be and I asked her on a scale from 1-10 how worried should I be? She chuckled a little and thought for a moment and said "well, Lily is really sick so I would say like a 6." "Okay" I thought. "Its not an 8 or higher. We got this". Shortly after she got a call from the pediatric hematologist/oncologist and when she came back her demeanor had changed. She said that after talking to him she was a little more worried and that he was ordering a bone marrow biopsy for 11 am the next morning. She said that he was going to come in and look at a blood smear which would show what the blood cells actually look like. That with the biopsy we should know for sure what was going on.

Still I thought we don't know anything yet we have to stay positive. Everyone kept talking about different viruses, mono and this and that but no one was willing to say the L word. So, after alot of guessing and assuming, Lily and I spent the night in the hospital, her sleeping blissfully getting pumped full of someone else's  blood, while I lay there in complete shock that this is actually happening. At this point though I still thought we would be out of the hospital by Monday for me to return to work. Even the next morning her Dr. said that the blood smear showed a lot of immature cells but they didn't know anything more. 

So about 10:30 they came to Lily's room and got us to prep for the bone marrow biopsy. I was sitting in the hospital bed with Lily on my lap and the hematologist/oncologist comes in and introduces himself and sits down by her bed. He looked at Jake and I and said "so tell me, what do you know so far?" (Okay mini lesson learned, if a Dr. is asking you what you know in a situation like this, it cant be good. Just sayin). He then began to explain that Lily's blood smear showed a lot of immature blood cells which are leukemic cells. He said flat out right then and there that he knew that Lily had leukemia but he had to do the biopsy to find out exactly what kind. I'm not sure what I felt at that moment all I know is that I couldn't stop holding her and combing my fingers through her hair. I just tried to pay attention to what he was saying. He explained that since he was sure that she had leukemia that it was standard procedure to also do a spinal tap and place chemo right in her spine now to check/prevent the leukemia from getting to her brain... Whoa. So we are really doing this then... She really truly actually has CANCER!? No kid you ever really know has cancer. I mean everyone knows that kids get it but to know a kid with cancer? No. That's not something that would happen to me.... Oh but Jana it is. Its been 22 days since I found out that Lily has leukemia and I'm still hoping that someone will pinch me and Ill wake up to my sweet little baby girl tickling me and snuggling me and laughing with me. So far that is not going to happen.

Even after Lily's oncologist got the results back from her bone marrow biopsy and confirmed that she had Acute Lymphoblastic Leukemia (ALL) I was just sitting there, taking notes, trying to listen to everything that he said. I really felt mentally I was handling everything pretty well. 2 of my sisters were on their way to visit and I was trying to remain strong. I guess what I didn't expect was how physically ill I would feel. I wasn't a total basket case (even though I'm sure that would have been justified.) I mean I had my moments and I have had my melt downs (lets face it. Jake and I still do) but all in all on the outside I was pretty calm and composed. Inside on the other hand was a different story. I was so sick. As soon as anyone started talking about leukemia and this is what this means, and here is what you have to do for this, and next we are doing this, this and this I would get so nauseous I could barely breathe. I didn't really eat for 2 days after we got home. That I was not prepared for. That I could have never imagined. I really thought that I would have been strong enough to handle it.

Lily spent a total of 7 days in the hospital. She got 3 blood transfusions, had a spinal tap, intrathecal and intravenous chemo, and a surgery to have a permanent port placed in her chest for easy access to a vein for blood draws and chemo treatments. At not even 3 years old, and all through that she remained strong. She was brave and happy and resilient. My lesson learned from that is sometimes its okay to gain strength from your children. Lily had no clue that her giggles and jokes and snuggles got ME through those 7 days in the hospital. I know that this process is long, and hard, and I'll be the one to lift her  and give her strength sometimes,  but for that week, she showed me how to be strong and brave. She taught me how important and smile and a giggle can be. That is a lesson I will never forget. I cant always be strong, but now I know the simple things that I can do to give strength to others when they need it.