Today was a long day. I sat at work and I was pretty distracted all day. I realized something while I had so much going through my mind. Know what I realized? BRAIN TUMORS SUCK! They suck big hairy balls. I keep thinking about poor Jeremy. About how is life was cut so short. How one day his mom is taking care of him and the next he's gone. She will no longer be able to hug and kiss him when ever she wants. Her other children will no longer have their brother to play with and take care of. There is a huge part of their family now missing. Then I realized something else. We are in line to suffer the same fate. Why?

Because there is NO CURE for brain tumors. This is a horrible beast. We can prolong our children's lives, but at what cost? The tumor comes back, the kids sometimes end up blind, deaf, paralyzed, they have difficulty learning, they need lots and lots of extra help to do daily activities that you and I take for granted. We have been extremely lucky where Kelsey is concerned. She only has hemiplasia. That's where one side of her body is weaker than the other. She also still has the shakiness that initially led to her diagnosis. What does that mean for her? She'll never be a dancer, she won't be able to take gymnastics. She also won't be doing anything active as it tires her out quickly and she can't last.

Brain tumors are a different type of cancer. They do have grades to tell you how malignant they are. Grade 1 is basically benign and grade 4 is the most malignant. But don't let the word benign fool you. It's still a foreign body in the brain. There is only so much room in your head. Once you run out of room what happens? Kelsey has a high grade tumor. What does that mean? Her tumor is a grade 3. That means it's a fast growning, aggressive tumor? Prognosis? Honestly? I have no clue. I've researched it online but find different answers. The doctors here don't want to talk about prognosis because 1) they really don't know and 2) they don't want us to focus on the negative. What I do know is we're are in line to follow what many other brain tumor children have gone through. Most children won't get to grow up. They won't see a prom. They won't get married. They won't have 600 children (Kelsey) like they've always dreamed.

I know I should be focusing on the possibility of her getting better and being cured. But I'm thinking realisticly right now. I am cherishing every day that I have with my children. Even more so with Kelsey. I'm pretty sure I'll get to see my boys grow up, unless some freak even happens. Kelsey I don't know what's going to happen. We're always wondering how she is tolerating the chemo. We are always wondering if the tumor is responding to it. What happens when we get the MRI that says the chemo is no longer working? What happens when we hear that the tumor has reoccured and this time it's grown into a grade 4? Everytime Kelsey takes her chemo she runs the risk of making her current tumor immune to it. What does that mean? The chemo she is currently on is what they use to treat all high grade tumors. That means grade 4 tumors are treated the same way. So when her tumor stops responding to this treatment what does that leave us?

Reality sucks. I hate to think that one day I may no longer have my daughter. That is a thought that goes through my head every single day. But today, it was worse. I did make me want to come home and snuggle with my babies. I don't want to leave their sides. I don't want to miss a moment with them.

Hug your babies. Cherish each and every moment with them. Children are being diagnosed with brain tumors all the time. It's a horrible reality and until we find a cure and stop this BEAST we have to learn to deal. We shouldn't have to deal. Our children should be able to just be children. They shouldn't have to worry about going to the hospital and getting poked again. They shouldn't have to worry what their blood counts currently are. They shouldn't have to worry if they can hang around certain kids because they're at a higher risk for getting sick. They shouldn't have to stay home from church for fear of becoming deathly ill. Isn't that funny? You won't want to expose them to illness because they can become dealthy ill. But wait! Aren't they already deathly ill? They're fighting a terminal disease!

So that's my thought process right now. I can't help it. I'm sorry it's such a downer. But that's how I'm feeling right now.

I came home from work this morning, anxious to check my email. I keep waiting for updates on Jeremy (a little boy we met towards the end of Kelsey's radiation treatment). He hasn't been doing too well lately but I guess I didn't realize just how bad off he really has been. Well when I checked my email I got the sad/horrible news. Jeremy earned his angel wings this afternoon. I know I should be happy for him because he is no longer in pain but my heart is aching. He was just 7 yrs old.

Then I checked on another family that I hold close to my heart. King Juju. He passed away recently too. His mom is trying to be strong but honestly how strong can you be when you lose a child? He was only 4 yrs old. His mom put a special tribute up on his site for those who can't be there tonight or tomorrow for services.

Honestly it's been a rough month. I'm starting to not like January.