Randee came home from school yesterday with this little saying...
Whatcha Doin'?
Eatin' Chocolate.
Where'd ya get it?
The dog dropped it.
Where's the dog?
Behind the door.
What's he doing?
Making more.
Um yeah.
{Friday, April 25, 2008}
Watcha Doin'?
{Wednesday, March 12, 2008}
One Year Anniversary
This is what I wrote in Kelsey's journal on March 12th, 2007.
Boy what a day it's been. Things started off pretty normal. You went to "school" and I went to work. You started to complain that your head was hurting shortly after I dropped you off. After nap time you were still complaining so the teacher called me to let me know. Right away I called Nana and she walked to pick you up. When she got there Miss Valene told her about your day. You didn't feel like playing at all. When you were out on the playground you only stood on the side holding Miss Ginger's hand. When you were inside you were laying in the cozy cubby.
Nana decided to take you home. When you got home Nana gave you some Motrin and you spent the rest of the afternoon on the couch, watching "kids tv". While I was at work I decided to take you to the emergency room as soon as I got home. At this point I decided you needed to be checked. The worst they could do is send us home, right?
When I got home I walked in, grabbed you and we loaded into the van. Nana stayed home with Randee and Aaron. When we got to the hospital the waiting room was pretty full and I thought we were going to have to wait a long time. Surprisingly they called you back quickly. The ER doctor thought you were having migraines. He was ready to send you home but decided to run a CT scan since you already had one scheduled.
You did SO GOOD during your scan. You pretended to be a statue. You were perfect and were done in a matter of minutes. When you finished your scan the tech gave you three sets of playing cards. They were Go Fish, Crazy Eights and a matching game. You kept talking about how Randee and Aaron were gonna be so jealous that you got something and they didn't. You also couldn't wait to open them and play. We sat in your exam room watching a My Little Pony movie, waiting for the doctor to come in and release you.
A short while later the doctor came in. You weren't released. The doctor had some unsuspected news. Your scan came back abnormal. You had some major fluid on your brain. The ventricles that hold cerebral spinal fluid were extremely backed up and swollen. When looking further into the scan they found the cause. There is a mass in your brain. The doctor isn't sure what it is but it's the size of a robin's egg and it's preventing the fluid from draining.
You were admitted immediately. You need to have surgery to relieve the pressure. The nurses came in to start and IV. They had a very difficult time getting a line started. The vein in your hand blew so they put it in your arm. You weren't very happy about it. When they were done poking you, you got more toys. This time you got a Barbie and Little Mermaid stamp kit. Then it was time to take you up to your room. You didn't want a wheelchair so the childlife specialist picked you up and carried you.
You are in the Pediatric Oncology unit. Not because of the tumor but because it's the only room they had available. Your room is purple. You didn't really care about the room though. You just keep saying you want to go home. I'd be the same way after the poking from the emergency room.
Before you fell asleep the nurses had to take our your IV line and repoke you. This time they put it in your right hand. You were not happy. Three nurses had to hold you down. You are a strong kid. After this poke you got a black kitten beanie baby. You said you want to give it to Aaron.
After getting your IV and toy you had a visitor. A little girl from down the hall. She's been here a week and is getting ready to go home. She heard you crying and wanted to make you feel better. She talked to you for a little while then gave you a Bratz doll. After her visit it was time for bed. We turned on some relaxing music and you went to sleep.
Boy what a day it's been. Things started off pretty normal. You went to "school" and I went to work. You started to complain that your head was hurting shortly after I dropped you off. After nap time you were still complaining so the teacher called me to let me know. Right away I called Nana and she walked to pick you up. When she got there Miss Valene told her about your day. You didn't feel like playing at all. When you were out on the playground you only stood on the side holding Miss Ginger's hand. When you were inside you were laying in the cozy cubby.
Nana decided to take you home. When you got home Nana gave you some Motrin and you spent the rest of the afternoon on the couch, watching "kids tv". While I was at work I decided to take you to the emergency room as soon as I got home. At this point I decided you needed to be checked. The worst they could do is send us home, right?
When I got home I walked in, grabbed you and we loaded into the van. Nana stayed home with Randee and Aaron. When we got to the hospital the waiting room was pretty full and I thought we were going to have to wait a long time. Surprisingly they called you back quickly. The ER doctor thought you were having migraines. He was ready to send you home but decided to run a CT scan since you already had one scheduled.
You did SO GOOD during your scan. You pretended to be a statue. You were perfect and were done in a matter of minutes. When you finished your scan the tech gave you three sets of playing cards. They were Go Fish, Crazy Eights and a matching game. You kept talking about how Randee and Aaron were gonna be so jealous that you got something and they didn't. You also couldn't wait to open them and play. We sat in your exam room watching a My Little Pony movie, waiting for the doctor to come in and release you.
A short while later the doctor came in. You weren't released. The doctor had some unsuspected news. Your scan came back abnormal. You had some major fluid on your brain. The ventricles that hold cerebral spinal fluid were extremely backed up and swollen. When looking further into the scan they found the cause. There is a mass in your brain. The doctor isn't sure what it is but it's the size of a robin's egg and it's preventing the fluid from draining.
You were admitted immediately. You need to have surgery to relieve the pressure. The nurses came in to start and IV. They had a very difficult time getting a line started. The vein in your hand blew so they put it in your arm. You weren't very happy about it. When they were done poking you, you got more toys. This time you got a Barbie and Little Mermaid stamp kit. Then it was time to take you up to your room. You didn't want a wheelchair so the childlife specialist picked you up and carried you.
You are in the Pediatric Oncology unit. Not because of the tumor but because it's the only room they had available. Your room is purple. You didn't really care about the room though. You just keep saying you want to go home. I'd be the same way after the poking from the emergency room.
Before you fell asleep the nurses had to take our your IV line and repoke you. This time they put it in your right hand. You were not happy. Three nurses had to hold you down. You are a strong kid. After this poke you got a black kitten beanie baby. You said you want to give it to Aaron.
After getting your IV and toy you had a visitor. A little girl from down the hall. She's been here a week and is getting ready to go home. She heard you crying and wanted to make you feel better. She talked to you for a little while then gave you a Bratz doll. After her visit it was time for bed. We turned on some relaxing music and you went to sleep.
{Friday, February 29, 2008}
If I could have just one wish
Let me think. I would wish that Randee could have it. That he could have my wish and it would actually come true. I feel like he's been left out so much since Kelsey was first diagnosed. We do all we can to include him in everything but it's just not the same. It's not HIS it's Kelsey's and he's along for the ride. I wish there were an organization out there that specialized in the siblings of the sick kid. Kelsey had her wish trip and it was awesome. But honestly, Randee isn't into princesses. He's not into ridding all the kiddie rides because his little sister is too small or too scared to ride the "fun" rides. I wish there were some way to ask Randee, if you could have one wish/any wish, what would it be? And I wish there were some way to make that wish come true.
{Friday, February 15, 2008}
To work or not to work... that is the question
I'm really struggling lately. I honestly thought I was ready to go back to work when I did. I figured Kelsey is doing good and I need to get away from the world of brain tumors. I needed adult interaction. We didn't really need the money but the extra is nice. Looking back at my initial reasons for going back to work I realize I was being selfish. Jason has a tough job. He's home one day and gone the next. Sometimes he's gone for a couple of weeks at a time. That makes it tough on me when it comes to doctor appointments. In December, Jason was in Alaska for three weeks. In that time we thought Kelsey was having seizures. She spent most of the week in and out of the hospital. This completely drained my PTO bank at work and I ended up having to take some leave without pay. I don't mind the lack of pay, that's not an issue. We do have a policy at work though that states you can't take leave without pay. If you do you will get written up and if it happens again you will be dismissed. My boss was extremely understanding and fought for an exception to this rule for me. The exception was granted. Last month Jason was in Texas and I had to take four hours off from work to take Kelsey to her monthly doctor appointment. I was to be back to work immediately after this appointment. Unfortunately, life had something else in store for me. That morning Randee woke up having a severe asthma attack. I called his pediatrician and they told me to take him to the emergency room since I was going to be at the hospital anyway. Randee was struggeling to walk from the house to the car because he couldn't breath. We spent 5 hours in the emergency room before we were discharged. From there we headed to Kelsey's appointment which I had to call and postpone until after Randee was taken care of. By the time Kelsey's appointment was done Randee was having trouble breathing again. So back to the emergency we head. Needless to say I didn't make it into work that day. I didn't have more than 4 hours of leave so I had to take the remaining without pay again. This time there was no exception granted for me. Last week I finally got the paperwork on my write up. As of today I have ten hours of leave saved up, for emergencies obviously. This afternoon I got really sick and couldn't work. I had to take four of those hours off and come home early. That leaves me six hours of leave. I have four hours scheduled to take off soon because I'm taking Jason to the airport (he's deploying again). My grandmother is on her deathbed. The doctor's give her just a couple more weeks to live. I can't got see her before she dies. I don't have the time to take off work. So I'm sitting home, 1400 miles away, waiting for the phone to ring and give me an update. Did I make the right decision going back to work? There are so many things I can't take care of now. What do I do? How do I handle working and being there for my family? My friend is trying to talk me into giving up my job. I feel bad even considering it. They are counting on me. They've invested so much into me. They were willing to take me back once I felt I was ready. How could I do that to them? But how much longer will I be working there at this rate? How much longer will I go without having some sort of crisis and end up having to take leave without pay again?
{Thursday, January 24, 2008}
Reality bites
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.
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.
{Wednesday, January 23, 2008}
Today is a sad day
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.
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.
{Friday, September 28, 2007}
Why I've been MIA
The main reason I've been offline is because we were out of town. It's been almost a week now that we got home. We were in Orlando, FL for K's Make A Wish trip. It was a wonderful experience and I totally plan on updating about that shortly. It's going to be a LONG post so I'll be breaking it up by days.
My main reason for posting tonight, aside from that I really needed to, is to update on my mom. As most of you know we moved her out here to be with us last November. She had lost her job and was losing her apartment when we decided to move her here. She had absolutely no income. She couldn't buy any sort of groceries so she was at the mercy of my brother and my grandpa to feed her. Half the time she didn't have gas money so she couldn't go to their houses anyway. She was also battling a really bad bout of depression. All of this added up and made me really worry about her. Being so far from her I felt helpless. So J, being the wonderful husband that he is offered to move her up here to live with us. It was only until she got on her feet. So she arrived here November 4th.
To date she still hasn't found a job. She did have a short work experience at the BX and at the base Burger King. But she hated both jobs so badly that she quit within a couple weeks of starting. She again has no money. Her car was repossessed in January. She is pretty much stuck in the house as long unless she goes somewhere with J or me. She has helped me quite a bit with the kids. Especially when K was first diagnosed with her brain tumor. She would take care of the boys while I took K for her early morning radiation treatments. She would also stay with K at the hospital so that J and I could get some rest and spend some time with the boys. But now that K is pretty stable, and I'm thinking about going back to work, my mom is miserable. She has such a pity party going on right now. She is depressed about not having a job but she's not doing much to better herself. She lives in our basement and refuses to come upstairs unless it's to eat. She swears my dog makes her sick but she was fine the entire time J was deployed. She's spending a lot of time worry about my grandmother since she had a stroke a few months ago. I've tried, many times, to plant the seed for her to go back to New Mexico. I know she hates it here. She doesn't like J and most of the time my kids annoy her. I hate seeing her depressed and honestly she is bringing down the rest of us. If we're having a good time, and she comes upstairs, you can feel it. The mood in the house changes. We feel bad for having fun when she is so miserable.
Yesterday afternoon I had a talk with J. We were talking about what we are going to do when mom's visitor pass expires in November. I don't want to put J into a hard place by having him renew her pass when he doesn't really want to. But at the same time I feel horrible kicking her out of the house when she has no where else to go. Then I think, maybe if we kick her out it'll force her to actually do something for herself instead of feeling sorry all the time.
This morning I emailed her. I am not a confrontational person and I was afraid she would take my words the wrong way. So I took the chicken way out. It worked. I acknowledged how unhappy she is here. And how I know she is really worried about my grandparents. So I told her, if she wants to, we will pay to send her back to New Mexico. I told her she could help out my grandparents and maybe that would give her life some meaning. Maybe then she could start to get over this depression she's stuck in. I told her to think about it and let me know. This evening, before dinner, she said yes. She wants to go back. So now we're in the process of finding the best way to get her there. I wouldn't mind flying her out, but then we have he furniture and boxes to ship out. I really don't want to pay a moving company a couple thousand dollars to ship less than one room full of stuff. It looks like my only real option will be to rent a truck and drive out there with her and then I'll fly back. I'm getting tired just thinking about it.
Oh did I mention I'm going to start working soon? Yeah that means that this long trip need to be done over the weekend. I'm so excited! (Can you hear the sarcasm?) Honestly I'm happy she's going back. I need to be able to take care of my family and raise my children without her chiming in.
My main reason for posting tonight, aside from that I really needed to, is to update on my mom. As most of you know we moved her out here to be with us last November. She had lost her job and was losing her apartment when we decided to move her here. She had absolutely no income. She couldn't buy any sort of groceries so she was at the mercy of my brother and my grandpa to feed her. Half the time she didn't have gas money so she couldn't go to their houses anyway. She was also battling a really bad bout of depression. All of this added up and made me really worry about her. Being so far from her I felt helpless. So J, being the wonderful husband that he is offered to move her up here to live with us. It was only until she got on her feet. So she arrived here November 4th.
To date she still hasn't found a job. She did have a short work experience at the BX and at the base Burger King. But she hated both jobs so badly that she quit within a couple weeks of starting. She again has no money. Her car was repossessed in January. She is pretty much stuck in the house as long unless she goes somewhere with J or me. She has helped me quite a bit with the kids. Especially when K was first diagnosed with her brain tumor. She would take care of the boys while I took K for her early morning radiation treatments. She would also stay with K at the hospital so that J and I could get some rest and spend some time with the boys. But now that K is pretty stable, and I'm thinking about going back to work, my mom is miserable. She has such a pity party going on right now. She is depressed about not having a job but she's not doing much to better herself. She lives in our basement and refuses to come upstairs unless it's to eat. She swears my dog makes her sick but she was fine the entire time J was deployed. She's spending a lot of time worry about my grandmother since she had a stroke a few months ago. I've tried, many times, to plant the seed for her to go back to New Mexico. I know she hates it here. She doesn't like J and most of the time my kids annoy her. I hate seeing her depressed and honestly she is bringing down the rest of us. If we're having a good time, and she comes upstairs, you can feel it. The mood in the house changes. We feel bad for having fun when she is so miserable.
Yesterday afternoon I had a talk with J. We were talking about what we are going to do when mom's visitor pass expires in November. I don't want to put J into a hard place by having him renew her pass when he doesn't really want to. But at the same time I feel horrible kicking her out of the house when she has no where else to go. Then I think, maybe if we kick her out it'll force her to actually do something for herself instead of feeling sorry all the time.
This morning I emailed her. I am not a confrontational person and I was afraid she would take my words the wrong way. So I took the chicken way out. It worked. I acknowledged how unhappy she is here. And how I know she is really worried about my grandparents. So I told her, if she wants to, we will pay to send her back to New Mexico. I told her she could help out my grandparents and maybe that would give her life some meaning. Maybe then she could start to get over this depression she's stuck in. I told her to think about it and let me know. This evening, before dinner, she said yes. She wants to go back. So now we're in the process of finding the best way to get her there. I wouldn't mind flying her out, but then we have he furniture and boxes to ship out. I really don't want to pay a moving company a couple thousand dollars to ship less than one room full of stuff. It looks like my only real option will be to rent a truck and drive out there with her and then I'll fly back. I'm getting tired just thinking about it.
Oh did I mention I'm going to start working soon? Yeah that means that this long trip need to be done over the weekend. I'm so excited! (Can you hear the sarcasm?) Honestly I'm happy she's going back. I need to be able to take care of my family and raise my children without her chiming in.
