Updated: Dec 22, 2018
I have quite the update today. I'll start with the good, but unfortunately it does end with bad. My stomach is in knots just getting through today (and it's not even 4:00 yet!)
So, a week ago I was contacted by the Red Corner Benefit - an organization that raises funds for children fighting cancer. I had never heard of them. They told me that the Westgrove Police Department and several other departments had participated in a "No Shave November" fundraiser in order to raise money for a family fighting pediatric cancer during the holidays. She told me they picked Julia. They didn't tell me much about it other than for someone to be present today at 11.
I went with family and Gabriel, and my niece and nephew. There were many officers there as well as other families who have been recipients of this foundation's generosity over the previous decade - all of whom have gone through this childhood cancer battle. There were many children there who have been fighting for years, and some were even cancer free! The Police chief gave a very wonderful speech and presented me with the funds they had raised. When asked why the police department chose childhood cancer, he said "We decided the littlest patients without a voice need the loudest voices talking for them". It is clear they are very passionate about this cause. On top of that, which I thought was everything, the Red Corner Benefit presented an even more generous amount, in honor of a sister who just recently lost the battle. It was a very emotional exchange.
I met a lot of people. I intended to come on here and tag them all, but now my mind is drawing a complete blank. I can see all their faces but I can't remember a single name. Many people offered resources and options to look into. There was food, drinks and dessert for lunch. Everything was decorated for Christmas. I think I saw an officer covered in holiday stickers. When I got the original message, I was asked for Julia's sibling's ages so they could have a gift to open. I told them Gabriel is one, but he's been living with his 12 and 8 year old cousins. They said they would have a gift for them too. OMG GUYS. These kids got to open a literal PILE of presents! They were in heaven. They were so grateful. My nephew practically jumped out of his seat with every one. Gabriel got stuff, I have 2 bags of gifts here for Julia to open, I got things, Reed got things... Individual families gave gift cards on top of everything. It was so unbelievable.
I included pictures from the event today. Look at that pile of presents! These kids are so deserving too... We're currently trying to talk my niece out of shaving her head for Julia when she loses her hair! And all they way to do is be by her side, but they can't be during flu season. These two adore both of their cousins, and I'm so blown away that this organization made this about them as well. Above and beyond doesn't begin to describe it.
They hold events every year - I believe a huge one in October for a new family, and then another one around Christmas. I will definitely be a part of these going forward... I hate that there will be another family with a new diagnosis, but I'm going to be there to provide support just like my family and I got today.
I wish I could end the update there. I'm already sick to my stomach thinking about writing this next part.
At some point during the night, Julia stopped responding to her neurological checks. They shine a light in her eyes every 2 hours to make sure they respond as expected. Last night they stopped. One was dilated, one wasn't, and there was no movement response. They woke up Reed and said she is being taken down for an CT scan. They found massive swelling in her brain, and immediate action was needed to save her life. They shaved part of the top of her head and put a shunt in it (hole what... number 7?) She currently has a tube out of her head draining fluid into a bag. They said they are happy with her initial response to the pressure relief.
They tested the fluid and found it to be filled with bacteria. It is clear that she has some sort of bacterial infection in her brain. This is likely what has been causing her fevers. They put her on very powerful antibiotics that cross the blood-brain barrier, which apparently most don't (all the antibiotics she's been on for pneumonia and stuff would have had no effect).
I wanted to wait to update until we knew what we're fighting ... you know, on top of the cancer, but we're not going to know for many hours at this point. They had to change out all of Julia's equipment for MRI-safe stuff. She just got wheeled down around 3:30 for a several-hour long MRI study. During this time they will hopefully find out exactly what infection it is (along with culture results); they will see if she has "puss nodules" anywhere from the infection, if so, those will need surgery to drain; and they will also look at her cancer progression.
They believe the infection entered through the back of her throat. The terms currently being tossed around are meningitis and neurosyphilis. Neither are good. But the doctors say as soon as they know which it is, they will tailor her antibiotics correctly.
With all these surgeries, her weakness, her minimal nutrition... at some point she's going to get hit with something she simply doesn't have the strength or immune system to fight off. I hope it's not this.
One step forward, two steps back.
So, we're waiting to know what it is, and to find out what the treatment options are
... I guess that's it. It's been a day full of extremes, that's for sure.