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.

5 Comments:

 Anonymous said...

You and Kelsey are alwasy in my and my husband's thoughts and prayers.

Hugs to you Brandi. And hugs to Kelsey and the rest of the family too.

9:31 PM  

 Anonymous said...

I came here through Sleeping Mommy's site. I am so srory to hear of your daughter's illness. I can not imagine what you are going through. I will keep your baby in my prayers. My sister's mother in law was diagnosed with a glioblastoma a few days ago. She had surgery to remove as much as they could since it was so large and putting so much pressure on her brain. She is doing well now but for how long...God only knows.

3:52 PM  

 Amy said...

Brandi, I just clicked over here for the first time in a while (normally keep up with Kelsey's CB site).

I just want to let you know that I still think of you all, especially of Kelsey, a LOT. You all are still in my prayers, too.

I cannot imagine what nightmare you all are dealing with, and be it unrealistic or not, I'm praying for a miracle in Kelsey. {{{hugs}}}

6:08 PM  

 Erin said...

I just wanted to wish you all the best. My sister Shelly had mentioned that my husbands mom was diagnosed with a grade 4 gleo-blastoma brain tumor. Sadly it is cancerous and terminal. It is a horrible thing to have to experience and I can't even begin to imagine if it were my child. Should you ever want to talk I am here. For now se is recovering beauifully from surgery to remove wha they could of the tumor and they will begin her on Temedar (Chemo) and radiation for 5 weeks. From there everything will have to be re-evaluated based on the future growth of her tumor. It is horrible for anyone to get this kind of news and we can only be thankful tat she was so positive about fighting it. I wish te best for your little angel and se will always be in my thoughts and prayers.

8:47 AM  

 Anonymous said...

The kind of hurt you're probably feeling is truly un-fathomable to me.. I am so sorry this is happening to your family. You and your daughter will be in our prayers..

7:41 AM  

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