I want to let people know that this blog is something that April and I have used as a way to get news out, a way to vent about the situation, a way to ask for support from family and friends and survivors of hepatoblastoma or any cancer, we love the comments and e-mails, they move us in many ways.
I also want everyone to know that often times we are posting at a time that is really bad, but that it knocks us down to our knees for awhile, but, WE REGROUP! We are not in that state of mind the entire time until the next post, and often we are working on the next plan. The post is simply a moment in time in this battle. Often times a weak moment, but we are not in that mind set the entire time. We move on to the next hurdle and figure out a new strategy. This one is hard because we are in limbo. We don't know for sure if it coming back, or what the plan of therapy would be. But if it is we will have a plan.
Now when I got the news from the nurse, it was still a blow. She told me the number and I said "Oh no", "Oh no". I was driving to the Woodinville branch and I turned around and went home. I wanted to lie down and cry with April and we did for a moment. But Ashley picked up on it, and Whitney did too, so I said "We got to be strong in front of them!"
So we regrouped, we talked with the Doctors. They said that it still could be liver regeneration. It was too early to tell. We are focusing on that outcome but were still scared.
I called the father of another hepatoblastoma patient, who faced even more adversity. We asked how they got through it. They were told to do pallative care for their son. They didn't give up. They came to Children's in Seattle to get a second opinion. Their son is cancer free now for 2 years. We asked him if we needed to get a second opinion where would we go. Probably Pittsburgh. He said however that a second opinion wasn't needed and might not be needed. Only if they find a tumor that Children's in Seattle can't get.
This is still hard. It was a big setback to go back to square one when we were so close to the finish line. But we will fight until we exhaust every chance for a cure. If it comes back in the liver we will get it there, if it comes back in the lungs we will get it there, if it comes back anywhere we will get this damn thing! We will go to Pittsburgh, or London, or Australia or wherever we have to to beat this thing!
The other bad news we got was that Ashley has another urinary tract infection. But our collection method wasn't sanitary. April let Ashley walk around naked before her bath and managed to collect a mid-stream urine sample. It was a big victory for us today because the other collection method is this plastic bag that we have to stick on Ashley. She hates it, and it never catches the pee. We were excited about the urine sample, so we drove it to Children's tonight. Whitney fell asleep on the way back. We needed to culture this thing right away because Ashley's ANC would be falling here pretty soon so we need to treat it right away. She hasn't been sleeping very well the last few nights. She wakes up crying when she pees in her sleep.
The kids are asleep now, if we need to cry we can do it now.