Posts
Thursday, December 29, 2011
::Dust::
Here is to blowing our $50 goal out of the water by $220 donated just tonight!
Thank you to everyone who took part in making this evening fun!
Toon in soon, we have more tricks up our sleeves!
You know, that post where I tell you I am gonna shave my head for money.
So y'all know about St. Baldrick's Foundation right? Well I have formed a team here in Evansville. The shave is going to take place March 15th at RiRa's. I felt that Team Keegan needed to represent in the fight against childhood cancer. I have one other Shavee on my team but would LOVE to have ATLEAST 3 more.....you heard that right....three more shavee's.
All you gotta do is head over to HERE and you can either sign-up on Team Keegan to volunteer, be shaved or donate monies! I will be holding random contests for stupid stuff over NOW HERE to see what is going on on any given day!
Tonight "It has been decided from the Team Keegan Page that if we 1) Get another volunteer(tonight) to definitely shave their head with me for St. Baldricks here in Evansville 2) Get $50 in donations (totally tonight) from random donars that I will take a picture of my fat butt standing in a headstand in my hall and post it on FB!"
So there ya go! ::Que Theme Music:: Lets get it start ah lets get it started in heeerrreee::
All you gotta do is head over to HERE and you can either sign-up on Team Keegan to volunteer, be shaved or donate monies! I will be holding random contests for stupid stuff over NOW HERE to see what is going on on any given day!
Tonight "It has been decided from the Team Keegan Page that if we 1) Get another volunteer(tonight) to definitely shave their head with me for St. Baldricks here in Evansville 2) Get $50 in donations (totally tonight) from random donars that I will take a picture of my fat butt standing in a headstand in my hall and post it on FB!"
So there ya go! ::Que Theme Music:: Lets get it start ah lets get it started in heeerrreee::
Saturday, December 24, 2011
Our First Christmas
The feelings and emotions are still raw and {{right there}}. It's hard to deal with the day to day emotions let alone Christmas. I'm not 100% how I am gonna get through the next couple of days let alone the New Year feeling like I am leaving my one and only son in the year 2011.
I know it will get better, I know I will have good days and bad and I know in the rational part of my brain that I will never ever forget his laugh, his dimple right above his butt crack and his love for Elmo. But unfortunately the holidays are making it a little bit harder to help myself get beyond the grief.
I still have that peace, I do. He is gone and in no more pain, but like I said on face book a few days ago, DAMMIT I miss that kid!
I know it will get better, I know I will have good days and bad and I know in the rational part of my brain that I will never ever forget his laugh, his dimple right above his butt crack and his love for Elmo. But unfortunately the holidays are making it a little bit harder to help myself get beyond the grief.
I still have that peace, I do. He is gone and in no more pain, but like I said on face book a few days ago, DAMMIT I miss that kid!
Christmas '10
Tuesday, December 20, 2011
How life can change in 2 weeks....
Its been 2 weeks or 14 days 9 hours and 15 minutes since I heard my baby take his last earthly breath. 20,715 minutes since I calmly told him while stroking his stubby hair that mommy and daddy where right there with him, he could go onto heaven and we would see him shortly. I told him how much we loved him and crawled back in bed. The three of us, in the bed he was conceived coming full circle with the death of the baby we created. It was surreal and continues to seem like it was all a movie or bad dream.
When I am doing something away from the living room, lets say in the kitchen, I have this feeling that I need to go into living room and check on him while he is watching elmo. When we went to our life group this past weekend I had this urge to ask my mom how he was doing and did he behave well while we were gone. I went to the bedroom to get dressed in my sleepy clothes when I got the urge to check his crib, which is currently in our room, give him a kiss and tell him I love you and goodnight.
I know it's not gonna get any easier for awhile. I pray everyday that I don't forget a smile, his laugh, his pudgy little wrists or ankles, those beautiful blue eyes that could make you melt and all the wonderful things that made Keegan Keegan. He was and will always remain my baby. While we are hoping for more children in the future, I never EVER want the feeling that I am replacing him in any way shape or form.
I am reading a book right now sent to me from a foundation for grieving parents. The book is called Gone but Not Lost : Grieving the Death of a Child.I have breezed through it and it is written with lots of biblical references which help me out a lot. So anyone out there in a similar situation I HIGHLY recommend this book written by David W. Wiersbe.
While I have lots and lots of emotions with this whole thing, I want to add there is a sense of peace in it all. I was talking with our Pastor last week and told him of this sense of peace and one of his only comments about it was that is awesome. Very few people experience this peace that transcends all understanding (Philippians 4:7). I can tell you that it happens and it is true. I am at peace for the most part. He was suffering-to what degree I am not aware but he was it was evident. All the days of doctors appointments, tests and hospitals stays. Those are all behind us. He is at peace in heaven with God who takes special care of all children. THAT gives me comfort.
I miss him beyond words, I can't look at pictures and not want to cry or go through old blog posts and not be brought to sobs but it will get better, and when I think I am alone I have to remember that I have a wonderful husband and family by my side but most importantly God carries me when I am too week to carry myself.
When I am doing something away from the living room, lets say in the kitchen, I have this feeling that I need to go into living room and check on him while he is watching elmo. When we went to our life group this past weekend I had this urge to ask my mom how he was doing and did he behave well while we were gone. I went to the bedroom to get dressed in my sleepy clothes when I got the urge to check his crib, which is currently in our room, give him a kiss and tell him I love you and goodnight.
I know it's not gonna get any easier for awhile. I pray everyday that I don't forget a smile, his laugh, his pudgy little wrists or ankles, those beautiful blue eyes that could make you melt and all the wonderful things that made Keegan Keegan. He was and will always remain my baby. While we are hoping for more children in the future, I never EVER want the feeling that I am replacing him in any way shape or form.
I am reading a book right now sent to me from a foundation for grieving parents. The book is called Gone but Not Lost : Grieving the Death of a Child.I have breezed through it and it is written with lots of biblical references which help me out a lot. So anyone out there in a similar situation I HIGHLY recommend this book written by David W. Wiersbe.
While I have lots and lots of emotions with this whole thing, I want to add there is a sense of peace in it all. I was talking with our Pastor last week and told him of this sense of peace and one of his only comments about it was that is awesome. Very few people experience this peace that transcends all understanding (Philippians 4:7). I can tell you that it happens and it is true. I am at peace for the most part. He was suffering-to what degree I am not aware but he was it was evident. All the days of doctors appointments, tests and hospitals stays. Those are all behind us. He is at peace in heaven with God who takes special care of all children. THAT gives me comfort.
I miss him beyond words, I can't look at pictures and not want to cry or go through old blog posts and not be brought to sobs but it will get better, and when I think I am alone I have to remember that I have a wonderful husband and family by my side but most importantly God carries me when I am too week to carry myself.
Thursday, December 15, 2011
My Life.
There are many cliche's that are synonymous with my life right now. I don't feel like going into all those {at this point-not to say at a later date I wont want to have a pitty party where I ask you to pull up your most comfy blanket and a glass of wine-but that is later}. This is now, this is the reason I stayed up way to late last night thinking of life, my life and what it means now, after my child has passed away.
Right now, my life as I know it consists of minutes that feel like hours and hours that seems like days. My purpose is undefined and I feel like I am roaming around an empty house with an empty hole in my chest. I get up whenever I want usually after 8 roam around the house like a lost puppy pondering what to do with all the minutes of all the hours of the day. Some people would die for a schedule like this, but I can tell you that when you are used to getting up at 6:15am routinely to feed your toddler and give the 8 am medicines, you miss your "normal". What I would call the feelings of worth and purpose.
Mornings that were once filled with Occupational therapy, Elmo and "music time" are now filled with endless mind numbing hours on the computer coupled with naps and pitty parties. I stare at all his toys, I walk into his room and I contemplate doing something with it all but I can't muster the strength. I try to tell myself that is only been a little over a week since the unexplainable happened. Since our one and only son went to be with Jesus, but he defined me. I was (and will be) Keegan's Mommy until the day I die.
I guess I just have to find the new me, the new meaning in my life, the new set of regimens and schedules that will define me and make me feel whole again.
Side note: This is all not to say that my husband doesn't mean the world to me because he does and always will. I was Keegans caretaker most of the time and it is what life for me was.
Right now, my life as I know it consists of minutes that feel like hours and hours that seems like days. My purpose is undefined and I feel like I am roaming around an empty house with an empty hole in my chest. I get up whenever I want usually after 8 roam around the house like a lost puppy pondering what to do with all the minutes of all the hours of the day. Some people would die for a schedule like this, but I can tell you that when you are used to getting up at 6:15am routinely to feed your toddler and give the 8 am medicines, you miss your "normal". What I would call the feelings of worth and purpose.
Mornings that were once filled with Occupational therapy, Elmo and "music time" are now filled with endless mind numbing hours on the computer coupled with naps and pitty parties. I stare at all his toys, I walk into his room and I contemplate doing something with it all but I can't muster the strength. I try to tell myself that is only been a little over a week since the unexplainable happened. Since our one and only son went to be with Jesus, but he defined me. I was (and will be) Keegan's Mommy until the day I die.
I guess I just have to find the new me, the new meaning in my life, the new set of regimens and schedules that will define me and make me feel whole again.
Side note: This is all not to say that my husband doesn't mean the world to me because he does and always will. I was Keegans caretaker most of the time and it is what life for me was.
Sunday, December 11, 2011
Events....
I am honestly at a loss. I am not sure what to write but feel that I need to write for myself and all of you who have supported us through this rollercoaster the past year and half.
Keegan's viewing and Memorial Service were everything a mother could hope for (given the situation). We received friends, family and people Keegan touched on Thursday from 2-4 and from 5:30-8. It stayed steady with people coming in and out. We had TONS of family there which helped out tremendously and lots of co-works of Ryan, my mom and sisters.
The room was decked out in photos of Keegan through his two short years of life. We included favorite stuffed animals, toys, and his beloved kiddy lazyboy equipped with one of his favorite blankets. Photobooks both made on a photosite and just plain old albums were scattered around the room for people to view. We received so many flowers, angels, throws, and mementos I am overwhelmed. The room looked beautiful. We decided on an evergreen spray with red roses white carnations and some poinsettas to top his casket along wtih a ribbon that said Angel. Behind his casket were clusters of red, green and white balloons. We received many compliments on how wonderful the room looked.
He was dressed in a cute little vest, white button down and clip on red tie. This was not to be outdone by his favorite pair of jeans from the Children's Place (which you really couldn't see because that part of the casket was closed). He looked perfect with his favorite blankee and cookie.
On Friday we held the memorial service at our home church One Life Henderson. I along with my husband hand picked our worship songs taking deliberate thought as to which ones and what they mean to us. Here was the line up:
Welcome: Pastor Bret
Speakers: I wrote something, Abby (my sister) read a letter and my other sister Mary Ellen read a poem.
Song 1 - I Will Rise - Tomlin
Song 2 - God I look to you - Bethel Live (Jenn Johnson)
Speakers: Nurse Mandy who read a wonderful speech she put together about her time spent with him, Keegans cousin Caden who read about cancer and the fight, and Keegan's uncle Steve about what a fighter Keegan was.
Bret (main message)
Song 3 - Amazing Grace (Chains are Gone) - Tomlin
Song 4 - The Stand - Hillsong United
Closing
Elmo's World
The Memorial service was a perfect mix of rememberance and hope knowing that Keegan is resting in Heaven with his Granny and Cousin. It encorporated things he loved like worship music and a slide show that ran the entire service of pictures from the last 2 years.
After the service friends, family and supporters all filed by to say one last goodbye and express their condolences. It was hard, really hard. When all of them had left and it was just family, we took our turns saying goodbye to the good lookin boy all dressed up for his party in heaven. I went first-whispered loving words into his ear hoping he could hear me in heaven. I then stuck a note, written by me next to him in his cofffin. My husband went next, then my mom and sisters. I snuck back in and got a good kiss on his little lips before the casket was closed for good. (that is one of the hardest things I have had to do-besides physically seeing and hearing him take his last breath.)
We spent the last couple days with family that were in from out of town which semi distracted the gaping whole left in my heart and soul. As they have all now have gone I don't know what to do. We have received his death certificates and it has been 48 hrs since he passed so he should be creamated tomorrow with his cremains back in our loving hands by mid to late week. It will be nice to have him back at home although in a different form.
I won't lie, it hurts. It hurts really really bad. I broke down in church today after one of our campus pastors mentioned him in a prayer we held together after the service. It doesnt feel right. I keeping thinking he is just napping and will be waking any minute.
Keegan's viewing and Memorial Service were everything a mother could hope for (given the situation). We received friends, family and people Keegan touched on Thursday from 2-4 and from 5:30-8. It stayed steady with people coming in and out. We had TONS of family there which helped out tremendously and lots of co-works of Ryan, my mom and sisters.
The room was decked out in photos of Keegan through his two short years of life. We included favorite stuffed animals, toys, and his beloved kiddy lazyboy equipped with one of his favorite blankets. Photobooks both made on a photosite and just plain old albums were scattered around the room for people to view. We received so many flowers, angels, throws, and mementos I am overwhelmed. The room looked beautiful. We decided on an evergreen spray with red roses white carnations and some poinsettas to top his casket along wtih a ribbon that said Angel. Behind his casket were clusters of red, green and white balloons. We received many compliments on how wonderful the room looked.
He was dressed in a cute little vest, white button down and clip on red tie. This was not to be outdone by his favorite pair of jeans from the Children's Place (which you really couldn't see because that part of the casket was closed). He looked perfect with his favorite blankee and cookie.
On Friday we held the memorial service at our home church One Life Henderson. I along with my husband hand picked our worship songs taking deliberate thought as to which ones and what they mean to us. Here was the line up:
Welcome: Pastor Bret
Speakers: I wrote something, Abby (my sister) read a letter and my other sister Mary Ellen read a poem.
Song 1 - I Will Rise - Tomlin
Song 2 - God I look to you - Bethel Live (Jenn Johnson)
Speakers: Nurse Mandy who read a wonderful speech she put together about her time spent with him, Keegans cousin Caden who read about cancer and the fight, and Keegan's uncle Steve about what a fighter Keegan was.
Bret (main message)
Song 3 - Amazing Grace (Chains are Gone) - Tomlin
Song 4 - The Stand - Hillsong United
Closing
Elmo's World
The Memorial service was a perfect mix of rememberance and hope knowing that Keegan is resting in Heaven with his Granny and Cousin. It encorporated things he loved like worship music and a slide show that ran the entire service of pictures from the last 2 years.
After the service friends, family and supporters all filed by to say one last goodbye and express their condolences. It was hard, really hard. When all of them had left and it was just family, we took our turns saying goodbye to the good lookin boy all dressed up for his party in heaven. I went first-whispered loving words into his ear hoping he could hear me in heaven. I then stuck a note, written by me next to him in his cofffin. My husband went next, then my mom and sisters. I snuck back in and got a good kiss on his little lips before the casket was closed for good. (that is one of the hardest things I have had to do-besides physically seeing and hearing him take his last breath.)
We spent the last couple days with family that were in from out of town which semi distracted the gaping whole left in my heart and soul. As they have all now have gone I don't know what to do. We have received his death certificates and it has been 48 hrs since he passed so he should be creamated tomorrow with his cremains back in our loving hands by mid to late week. It will be nice to have him back at home although in a different form.
I won't lie, it hurts. It hurts really really bad. I broke down in church today after one of our campus pastors mentioned him in a prayer we held together after the service. It doesnt feel right. I keeping thinking he is just napping and will be waking any minute.
Tuesday, December 6, 2011
Heavy Hearts and Tear Filled Eyes
It is with heavy hearts and tear filled eyes that I announce:
To View his online obituary: http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Keegan-Chupp&lc=2683&pid=154924735&mid=4911117&locale=en-US
To View his online obituary: http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Keegan-Chupp&lc=2683&pid=154924735&mid=4911117&locale=en-US
Monday, November 28, 2011
Making Sense.....
I am trying to make sense of why life is the way it is. Why we, Ry & I, have been given this beautiful, smart, adorable little boy to love and care for only to have cancer invade his little body and ultimately will take him away long before his "time."
I should be writing a post to all my beloved followers out there about our Wish Trip and how wonderful it was. Or I could be writing a post about the wonderful holiday weekend that just passed having enjoyed it with family near and far. But instead tonight I am trying to make sense of why a mother (me) and a father (Ryan) went a funeral home to pre-plan the arrangements for their son's funeral.
It just doesn't make sense to me. Why? Why? Why? Why my child and not yours? Why my child and not the 90 year old grandmother of 5 with great grandchildren and great great grandchildren. The only thing that I can think of is, God needs him. He lent him to us for his short time here on earth to love with all our might but his ultimate purpose is far greater than we ever expected or dreamed-what proud parents we should be right?
I guess I am just selfish, I don't want that for him, I want him to live a long life here on this earth with his family-future brothers and sisters, grandparents and cousins. I want to see him grow up, go to school plays, graduate high school, head to college and do stupid stuff only to be told by me "I told you so". I want to watch him bring girls home for the holidays where we make them sleep in separate bedrooms (because that is what parents do) and I want to see him at the end of the aisle his beautiful bride walking toward him with a small tear in his eye. But we won't get that.
Instead we get a viewing we have purposely planned to be child like and bright and cheery equipped with balloons and bright flowers. Not depressing and funerlesk.We picked out the coffin because they don't "rent" children's caskets out due to lack of need. We decided on an amount of money for the flowers. We tentatively wrote his obituary and planned visiting times. We picked out the Urn that his cremains we be put in and picked out a nice saying to be engraved on it along with his name, date of birth and date of death. We shouldn't be having to do this, not now, not ever. It just doesn't make sense.
This is what we get though. These are the cards we are dealt and right now I am having a hard time with this. I am having a hard time knowing what is ultimately going to happen and having absolutely no control over it what-so-ever.
Tonight was hard, it didn't make sense and I am not sure it ever will. But it did give us a sense of peace a sense of control in an uncontrollable situation. The one thing I will strive for is to give his young life justice and show what a cool kid he is because really...this doesn't make sense.
I should be writing a post to all my beloved followers out there about our Wish Trip and how wonderful it was. Or I could be writing a post about the wonderful holiday weekend that just passed having enjoyed it with family near and far. But instead tonight I am trying to make sense of why a mother (me) and a father (Ryan) went a funeral home to pre-plan the arrangements for their son's funeral.
It just doesn't make sense to me. Why? Why? Why? Why my child and not yours? Why my child and not the 90 year old grandmother of 5 with great grandchildren and great great grandchildren. The only thing that I can think of is, God needs him. He lent him to us for his short time here on earth to love with all our might but his ultimate purpose is far greater than we ever expected or dreamed-what proud parents we should be right?
I guess I am just selfish, I don't want that for him, I want him to live a long life here on this earth with his family-future brothers and sisters, grandparents and cousins. I want to see him grow up, go to school plays, graduate high school, head to college and do stupid stuff only to be told by me "I told you so". I want to watch him bring girls home for the holidays where we make them sleep in separate bedrooms (because that is what parents do) and I want to see him at the end of the aisle his beautiful bride walking toward him with a small tear in his eye. But we won't get that.
Instead we get a viewing we have purposely planned to be child like and bright and cheery equipped with balloons and bright flowers. Not depressing and funerlesk.We picked out the coffin because they don't "rent" children's caskets out due to lack of need. We decided on an amount of money for the flowers. We tentatively wrote his obituary and planned visiting times. We picked out the Urn that his cremains we be put in and picked out a nice saying to be engraved on it along with his name, date of birth and date of death. We shouldn't be having to do this, not now, not ever. It just doesn't make sense.
This is what we get though. These are the cards we are dealt and right now I am having a hard time with this. I am having a hard time knowing what is ultimately going to happen and having absolutely no control over it what-so-ever.
Tonight was hard, it didn't make sense and I am not sure it ever will. But it did give us a sense of peace a sense of control in an uncontrollable situation. The one thing I will strive for is to give his young life justice and show what a cool kid he is because really...this doesn't make sense.
Tuesday, November 22, 2011
Last Call
One week left in the Pampered Chef Party.
Below is the link to the online party. Feel free to peruse the site. If you can buy something great if not that is fine too :) Thanks so much for all the support. Christmas Shopping maybe? We get a portion of the proceeds to go toward Keegan's final expenses.
Below is the link to the online party. Feel free to peruse the site. If you can buy something great if not that is fine too :) Thanks so much for all the support. Christmas Shopping maybe? We get a portion of the proceeds to go toward Keegan's final expenses.
Saturday, November 19, 2011
Stationery card
Snowy Window Christmas Card
Turn your favorite photos into personalized Christmas cards.
View the entire collection of cards.
cards and a million different sites. I finally decided on this one!
What do you think?
Wednesday, November 9, 2011
Welp, we are off!
In less than 24 hours Ry, Keegan and I will be headed north to Indianapolis. Kee has an appointment at Riley tomorrow afternoon with his oncologist to check counts and those sort of things.
On Friday 11-11-11 at 11 am Ry, Keegan and I will be boarding an airplane in Indy headed to Orlando. Keegan got his wish granted by Indiana Children's Wish Fund . We will be staying at Give Kids the World, which from what I heard is amazing in itself.
We will be visiting the Magic Kingdom, Epcot, The Animal Kingdom, Universal and Seaworld. This is all dependent on Keegan and what he can tolerate. Give Kids the World also has a mirage of activities and parties throughout the week.
We are excited! Obviously Keegan doesn't know what is coming but we are so very excited for this time and this trip to make memories to last a lifetime! I look forward to seeing how he reacts to the characters and everything that is Disney!
So look forward to a post is a little over a week about our travels and memories!
Until then,
Peace*Love*Mickey
Tuesday, November 8, 2011
Raffle over on the FB
Soooooo a raffle starts tomorrow over on the Karing for Keegan Fundraiser page on facebook. You have to "like" the page first and then you can view the raffle folder. Which includes donations such as Mary Kay gift certificate, cloth diapers, and Amazon gift cards.
Raffle Instructions (PLEASE READ FIRST)
In order to enter to win any of the prizes in this album, you must first pay $5 via paypal to: crystalbiehl@ballstate.bsu
Just a note--all items are valued at $20 or greater.
If you do not have a paypal account, you can send cash or check to me. If this is the case, please send me an email at karingforkeegan@hotmail.co
Now, what does that $5 allow you to do?
It allows you to enter to win any of the prizes in this album. So, if you like everything, you can enter to win everything! You do NOT have to pay $5 for each item you want to win.
How do you enter to win?
On November 9, you will find a link under each picture that says "Enter Here". You simply click on the link, fill out the information, submit and you are entered! You will do this for each item you want to win.
Can you get extra entries?
Yes. Each additional $5 that you donate allows you to enter to win again. So, if you donate $10, you can fill out all the entry forms twice. If you donate $15, you can fill out all the entry forms 3 times, etc.
How long will the raffle last?
The raffle will go until midnight, EST (Easter Standard Time) on November 16.
How are winners drawn?
I will use random.org to pick a winner for each item. (The entry forms you fill out are linked to spreadsheets that will keep track of how many people have entered, etc.)
How will you know if you won?
I will email you from the karingforkeegan hotmail account as well as post it under each item.
Can you win more than one item?
Yes! It is just luck of the draw.
Where is the money going?
100% of the money is going to Beth, Ryan and Keegan Chupp
In order to enter to win any of the prizes in this album, you must first pay $5 via paypal to: crystalbiehl@ballstate.bsu
Just a note--all items are valued at $20 or greater.
If you do not have a paypal account, you can send cash or check to me. If this is the case, please send me an email at karingforkeegan@hotmail.co
Now, what does that $5 allow you to do?
It allows you to enter to win any of the prizes in this album. So, if you like everything, you can enter to win everything! You do NOT have to pay $5 for each item you want to win.
How do you enter to win?
On November 9, you will find a link under each picture that says "Enter Here". You simply click on the link, fill out the information, submit and you are entered! You will do this for each item you want to win.
Can you get extra entries?
Yes. Each additional $5 that you donate allows you to enter to win again. So, if you donate $10, you can fill out all the entry forms twice. If you donate $15, you can fill out all the entry forms 3 times, etc.
How long will the raffle last?
The raffle will go until midnight, EST (Easter Standard Time) on November 16.
How are winners drawn?
I will use random.org to pick a winner for each item. (The entry forms you fill out are linked to spreadsheets that will keep track of how many people have entered, etc.)
How will you know if you won?
I will email you from the karingforkeegan hotmail account as well as post it under each item.
Can you win more than one item?
Yes! It is just luck of the draw.
Where is the money going?
100% of the money is going to Beth, Ryan and Keegan Chupp
Head on over and check it out, you might be able to bid and win something for someone for Christmas!
Monday, November 7, 2011
Humbled & Thankful
We love our church. We love our pastor and all the people we consider our church family. They are amazing and talented people that I respect more than you will ever know. We had just entered the
""sanctuary" (not sure if that is what we call it since our church is set up a little different than most but anyway) when I saw Pastor Bret out of the corner of my eye, he was up toward the front. We were mingling with friends when he asked if we were coming or going. I replied coming. He simply said "hold on" and ran back toward the kids area.
He emerged a few minutes later with an envelope that ready Ryan & Beth Chupp. When I said thank you he explained that it was not from me but from someone who wanted to remain anonymous. While we were waiting for the band to start playing I opened the envelope up. It has a note and this is what it read:
""sanctuary" (not sure if that is what we call it since our church is set up a little different than most but anyway) when I saw Pastor Bret out of the corner of my eye, he was up toward the front. We were mingling with friends when he asked if we were coming or going. I replied coming. He simply said "hold on" and ran back toward the kids area.
He emerged a few minutes later with an envelope that ready Ryan & Beth Chupp. When I said thank you he explained that it was not from me but from someone who wanted to remain anonymous. While we were waiting for the band to start playing I opened the envelope up. It has a note and this is what it read:
"All the believers were together and had everything in common. Selling
their possessions and goods, they gave to anyone as he had need."
Acts 2:44-45 NIV
Ryan and Beth,
Our hearts break for you as you face this challenging time. Take comfort in knowing that you are surrounded by people who love you and who want to share God's love with you.
Please accept this gift to assist with medical bills and other expenses. This gift is born our of compassion and a desire to share God's love. it is not intended to minimize the deep emotions of the situation, but rather to express love and offer support.
Please know that God uses all outcomes for an ultimate good. Your story, Keegan's story, and the way that you have lived your lives throughout all the trials has been a testimony to your faith in god and your love for Keegan.
In His Love.
Along with this wonderful letter that I am keeping in a safe place, there was a cashier's check. I am so thankful, as well as Ryan is, that we have people in our lives (whomever you maybe) that care about us and our family at this trying time. I know most if not all the people that follow this blog do. But when you are handed something like this at church unexpectedly you are both humbled and in awe of Gods work at your time of need.
So thank you to the anonymous donor/donors! Not only are we thankful for the monetary donation for but for the kind words of support and love from fellow One Lifers!
With All our Love,
Beth, Ryan & Baby Kee
Thursday, November 3, 2011
Some Thoughts
I have had an Epiphany. It has happened in the last 24 hours, kid you not. I can understand part of the reason I worry so much. I know I have lots of reasons to worry and stress but the truth is I myself am a control freak and a planner.
The situation we are faced with is completely out of my control; obviously, and that is some of my problem. I can't control the when's and how's. I can control certain things like pain level and comfort. In a way that does help. I have a little power in a very unstable situation.
The planner part of me is trying to think of plan for his life celebration. While I am putting off the actual funeral home arrangements, I have ideas in my mind of how I/we should celebrate Keegan's two years of life and that gives me a bit of comfort and control.
There is one family in particular, whom we weren't terribly close at all during our children's stays at Riley but through email correspondence and most likely future phone calls, they have given me more courage to face the unthinkable and I am so thankful to have them in my life. They let me know they are there to talk, cry and vent. They lost their precious son less than a year ago so they relate and its still right there fresh in their minds which I feel has helped me bond to them.
I am so appreciative of all the emails and messages sent to us. They help lift my spirits that we are not in this alone, keep 'em comin :) I value each and everyone of my followers-new and old. You are walking with us and helping us feel less alone and more a part of a very special Team who cares for a very special Angel that I have had the honor to be his mom.
**Also a quick thank you to those who have contributed to Keegans Final Expense fund-Thank you Thank You Thank You!
The situation we are faced with is completely out of my control; obviously, and that is some of my problem. I can't control the when's and how's. I can control certain things like pain level and comfort. In a way that does help. I have a little power in a very unstable situation.
The planner part of me is trying to think of plan for his life celebration. While I am putting off the actual funeral home arrangements, I have ideas in my mind of how I/we should celebrate Keegan's two years of life and that gives me a bit of comfort and control.
There is one family in particular, whom we weren't terribly close at all during our children's stays at Riley but through email correspondence and most likely future phone calls, they have given me more courage to face the unthinkable and I am so thankful to have them in my life. They let me know they are there to talk, cry and vent. They lost their precious son less than a year ago so they relate and its still right there fresh in their minds which I feel has helped me bond to them.
I am so appreciative of all the emails and messages sent to us. They help lift my spirits that we are not in this alone, keep 'em comin :) I value each and everyone of my followers-new and old. You are walking with us and helping us feel less alone and more a part of a very special Team who cares for a very special Angel that I have had the honor to be his mom.
**Also a quick thank you to those who have contributed to Keegans Final Expense fund-Thank you Thank You Thank You!
Monday, October 31, 2011
Worry
“Worry is like a rocking chair--it gives you something to do but it doesn't get you anywhere.”
I have always been a worrier. Since the day I was born I have worried about things both in and out of my control. Its in my blood, my father is the EXACT same way. I have tried to change, I truly have, but life circumstances have just shown me that worry is warranted (in my small corner of the world).
They make medicine for that some will say. Yep, I know, I am currently on it, not once, but twice a day as needed. Unfortunately it's who I am, its in my DNA. So why should this aspect in the current season of my life warrant any less worrying? It shouldn't, I have a barrage of things to worry about and my thought is maybe by listing them here and putting them down in black and white will either:
A) make is seem like it is a legitimate worry
or
B) show me its as silly as all get out and can be put at the bottom of the "worry" list
Gosh, where to start, well I will just say it. I am worried that we don't have enough money in the bank for the kind of funeral/memorial that Keegan deserves and that I want for him. The first step obviously would be to contact the funeral home and get that ball rolling. As much as I am "down for that" it solidifies in my mind that my sweet little boy is not going to beat this and that breaks my heart even more than it's already broken. We pretty much know what we want for him already its just getting the price tag for it and that scares me to death. Do you know that the average funeral costs $6560 (2009)? I know when Ryan's mom passed away the bill was much more than this. While Ry and and I both have life insurance because I believe it's one of the best investments you can make as a married couple, we were unable to obtain life insurance on Keegan due to the Simpson-Golabi-Behmel diagnosis shortly after birth. Not to mention the subsequent cancer. I want it to do his sweet life justice without sacrifice. I know not many of you have been in our position and can't imagine it but wouldn't you want the best, nicest, most wonderful celebration of your child's life?
I worry, I am terrorized, and plagued with fear for the end. The unknown is the worst part. Keegan is doing well now and we are even going to discuss some other chemo options that he has yet to see to try to get some better results but without a miracle/divine intervention (which I know is possible) we are faced with the reality that the end WILL HAPPEN. Whether is sooner or later we don't know. And since we don't know then we obviously don't know how it will happen. Keegan's oncologist explained to us it can happen a plethora of different ways. The best and possibly "happiest" way for him to enter into eternity would be to just slowly stop breathing. The lack of oxygen provides a euphoric feeling. I know it's weird but that kind of comforts me. To know he would be "happy" as he left us and went into Heaven. I was there when my Mother in Law passed away from breast cancer just three short years ago and I relive her last days in my head all the time and I don't want that for my son. While I know their cancer's are different it still haunts me.
I fear that we will never be able to have another child and I also worry that if we manage to have more children they too will get sick and leave us. Some people know and others don't that we were trying for Baby Chupp #2 from February of this year up until last month, which obviously was unsuccessful. Lots of people have weighed in on the matter and while I haven't talked to my doctor about the issue yet some people seem to believe it was the stress I was under in my day to day life that inhibited conception. We became pregnant with Keegan our first try so this was very hard for me to endure. I temped and used OPK's and it just didn't happen. While we have put the plans for #2 on hold for now it is still there nagging me in the back of my mind.
Those are just some of the worries that run through my mind on a daily if not hourly basis. I know many of you will tell me to turn to God and let all my worries rest on his shoulders. I try. I am still working on that but a mother's worry is a mother's worry and those of you that are mom's I believe can understand this. I try not to let it "ruin" my day but I would be lieing if I told you these things weren't on my mind first thing in the morning and last thing at night.
Here is to a new day with less worry. Right?
Are YOU on Team Keegan?
While we are still praying for miracles and hoping for the best we should unite as one and continue to fight on. So with that said here is the plug. We are still selling T Shirts, Bracelets and Car Decals. I have (2) Youth Larges, Adult Smalls and Adult Mediums. Shirts can be purchased for $15 a piece. Bracelets are $2 and Decals are Free with any purchase. They can be mailed anywhere. I mostly accept paypal but can arrange something different if needed.
Thanks!
Thursday, October 27, 2011
How are WE doing you might ask.
The last week has proven to be one of the darkest in our lives. As we now try to find yet another new "normal" we struggle with knowing that our time is limited.
While the first few days were exceptionally hard, they have gotten a tad bit easier. I don't think that it is "easier" to know he is going to pass but I have come to the realization that there is not a darn thing we can do about it. Making these weeks (and if we are lucky enough) months special beyond imagination is what I am striving for. That is what gets me out of bed in the morning. Every day I make it my mission to make as enjoyable a day for the lil man as possible. Whether it be staying in the house in our PJ's all day and watching Elmo or going swimming at his Aunt Abby's Apartments indoor pool. Effort is definitely made to do the things we have learned he enjoys and loves.
We have had lots of family in and out of our house since last Friday. First it was Keegan's Aunt Erica & Uncle Steve along with 2 of his many cousins. Saturday brought his maternal grandfather, and my grandparents. We have enjoyed having everyone around visiting and getting to know Keegan. We will enjoy Uncle Bret & Aunt Toni this weekend along with two more cousins. It should be a fun time. It's nice to have family around enjoying what we get to enjoy every day, the smiles, laughter and attitude (if provoked).
I know we have a lot of people praying for our family, for Keegan and for Ryan and I's marriage. We really really appreciate it. Ry and I talk daily about the when's and how's along with what we are going to do without him. I come to him with my worry that I won't be able to do this and he gently reassures me that I can. At the same time when I told him I didn't want to do this, he told me I had to, blah.
We are both convinced that Keegan was sent to earth and to us in particular for a reason. What that reason is, we are still unsure. I am not even sure that we will ever find out in our lifetime. But the fact that we were chosen as his earthly parents makes me proud. He is a one of a kind kid and I have been blessed to be his mother, for whatever amount of time that is. I wish it was later rather than sooner but God has other plans for him and our family so we just roll with it.
I pray ALOT, I pray that we get another miracle and I pray that God take away Keegan's pain. Since prayer is all I have right now then that is what we must do. I turn to God multiple times a day asking for time, healing and miracles. Its ironic that over the past month or more the sermons at church have been revolving around prayer. I have taken a lot from these sermons and just last weekend the sermon was about praying for a miracle. Needless to say it really hit home. When I questioned our Pastor's wife after church about asking for another miracle and wondering if it was selfish and greedy, she simply replied absolutely not. (for those of you unaware an MRI performed in July '10 showed the tumor came back through the worst chemo possible. They sent us home with only a couple options and when we chose radiation we proceeded to get all our ducks in a row for that. We had another MRI before radiation was to commence which showed the tumor was gone, simply not there. We then proceeded on with the regularly scheduled chemo.) So here I am a little over a year after that life changing situation asking and pleading for another miracle to save my baby. It is possible through him. I am a believer!
On a side note: I would like to give a HUGE thank you to everyone who has signed up at mealtrain.com for us. We have had people volunteer to bring us meals every Monday, Wednesday, and Friday through JANUARY. I feel beyond blessed for all the wonderful people in our lives who are willing to take an evening out of their busy lives to make us a home cooked meal. THANK YOU THANK YOU THANK YOU. This means I don't have to worry about dinner at least 3 nights out of the week and we can just soak up extra Baby Keegan time!
And thank you to all the wonderful follower both here and on facebook that have given us wonderful words of encouragement and love in very very dark time. It means so much to us!
(I wanted to share some of our current family photos but the CD they are on is being funny so stay tuned for those!)
While the first few days were exceptionally hard, they have gotten a tad bit easier. I don't think that it is "easier" to know he is going to pass but I have come to the realization that there is not a darn thing we can do about it. Making these weeks (and if we are lucky enough) months special beyond imagination is what I am striving for. That is what gets me out of bed in the morning. Every day I make it my mission to make as enjoyable a day for the lil man as possible. Whether it be staying in the house in our PJ's all day and watching Elmo or going swimming at his Aunt Abby's Apartments indoor pool. Effort is definitely made to do the things we have learned he enjoys and loves.
We have had lots of family in and out of our house since last Friday. First it was Keegan's Aunt Erica & Uncle Steve along with 2 of his many cousins. Saturday brought his maternal grandfather, and my grandparents. We have enjoyed having everyone around visiting and getting to know Keegan. We will enjoy Uncle Bret & Aunt Toni this weekend along with two more cousins. It should be a fun time. It's nice to have family around enjoying what we get to enjoy every day, the smiles, laughter and attitude (if provoked).
I know we have a lot of people praying for our family, for Keegan and for Ryan and I's marriage. We really really appreciate it. Ry and I talk daily about the when's and how's along with what we are going to do without him. I come to him with my worry that I won't be able to do this and he gently reassures me that I can. At the same time when I told him I didn't want to do this, he told me I had to, blah.
We are both convinced that Keegan was sent to earth and to us in particular for a reason. What that reason is, we are still unsure. I am not even sure that we will ever find out in our lifetime. But the fact that we were chosen as his earthly parents makes me proud. He is a one of a kind kid and I have been blessed to be his mother, for whatever amount of time that is. I wish it was later rather than sooner but God has other plans for him and our family so we just roll with it.
I pray ALOT, I pray that we get another miracle and I pray that God take away Keegan's pain. Since prayer is all I have right now then that is what we must do. I turn to God multiple times a day asking for time, healing and miracles. Its ironic that over the past month or more the sermons at church have been revolving around prayer. I have taken a lot from these sermons and just last weekend the sermon was about praying for a miracle. Needless to say it really hit home. When I questioned our Pastor's wife after church about asking for another miracle and wondering if it was selfish and greedy, she simply replied absolutely not. (for those of you unaware an MRI performed in July '10 showed the tumor came back through the worst chemo possible. They sent us home with only a couple options and when we chose radiation we proceeded to get all our ducks in a row for that. We had another MRI before radiation was to commence which showed the tumor was gone, simply not there. We then proceeded on with the regularly scheduled chemo.) So here I am a little over a year after that life changing situation asking and pleading for another miracle to save my baby. It is possible through him. I am a believer!
On a side note: I would like to give a HUGE thank you to everyone who has signed up at mealtrain.com for us. We have had people volunteer to bring us meals every Monday, Wednesday, and Friday through JANUARY. I feel beyond blessed for all the wonderful people in our lives who are willing to take an evening out of their busy lives to make us a home cooked meal. THANK YOU THANK YOU THANK YOU. This means I don't have to worry about dinner at least 3 nights out of the week and we can just soak up extra Baby Keegan time!
And thank you to all the wonderful follower both here and on facebook that have given us wonderful words of encouragement and love in very very dark time. It means so much to us!
(I wanted to share some of our current family photos but the CD they are on is being funny so stay tuned for those!)
Monday, October 24, 2011
Pampered Chef
A follower of our story who happens to be a pampered chef consultant decided she would like to do an online pampered chef party to help us with bills and possibly hiring someone to come in and clean our home while Keegan is on Hospice. Below is the link to the online party. Feel free to peruse the site. If you can buy something great if not that is fine too :) Thanks so much for all the support. A longer blog post is coming soon, I just am still searching for words....
Friday, October 21, 2011
Unimaginable
We had our 3 month MRI yesterday. I would like to report that it was spectacularly clean, not a tumor that lit up. I would like to tell you that we danced out of the oncology unit with a "see you a 3 months" and were off to The Cheesecake Factory to celebrate.
But, that is not how our day turned out. We had the scan done and were up in the Oncology clinic by 11am. We were put in our room and told Dr. Shih would look at the scans and pop in to let us know what the preliminary results were. After waiting for about 30 minutes Dr. Shih enters our room along with our nurse practitioner Jayne. I knew by the looks on their faces that it wasn't good. Dr. Shih pulled up the trash can while Jayne sat in the rolly chair. As soon as they got settled in our Social worker joined the talk.
Keegan's latest MRI showed the cancer is back and worse than ever. Instead of just one tumor in his brain (original diagnosis) and the one in the spine, his brain and spine are covered in tumors. Simply put there is nothing more for the doctors to do. The cancer is winning. Dr. Shih told us we have been weeks and months left. He put him on two chemotherapy drugs that will have minimal side effects will giving us quality time.
So we left the clinic with instructions that HOSPICE would be calling and setting up our meeting. We left with a big void and broken hearts. How is my 2 year old only given weeks to months to live? I dont understand.
But, that is not how our day turned out. We had the scan done and were up in the Oncology clinic by 11am. We were put in our room and told Dr. Shih would look at the scans and pop in to let us know what the preliminary results were. After waiting for about 30 minutes Dr. Shih enters our room along with our nurse practitioner Jayne. I knew by the looks on their faces that it wasn't good. Dr. Shih pulled up the trash can while Jayne sat in the rolly chair. As soon as they got settled in our Social worker joined the talk.
Keegan's latest MRI showed the cancer is back and worse than ever. Instead of just one tumor in his brain (original diagnosis) and the one in the spine, his brain and spine are covered in tumors. Simply put there is nothing more for the doctors to do. The cancer is winning. Dr. Shih told us we have been weeks and months left. He put him on two chemotherapy drugs that will have minimal side effects will giving us quality time.
So we left the clinic with instructions that HOSPICE would be calling and setting up our meeting. We left with a big void and broken hearts. How is my 2 year old only given weeks to months to live? I dont understand.
Wednesday, October 19, 2011
::Deep Sigh::
First off, let me start this post by apologizing. I am so sorry for not updating as much lately. I find myself saying this a lot to our gracious followers. Its been a "normal" couple of weeks. Nothing major. I also decided about a week and a half ago to "try to not be on the computer as much." Its working out pretty well. I haven't turned my computer on since Sunday the 9th (until today of coarse). This means that I kinda forget about think like email and facebook. It also seems that I neglect my blog; again , sorry about that.
This post is gonna be short. We have an MRI tomorrow 10/20. I having been praying without ceasing. Any cancer patient or their family will tell you that MRI/CTs or other testing will bring out anxiety like never before. You live from scan to scan and the closer you get to the next scan the worse the fear and anxiety grip you. I am there right now. I have weened myself off of my anti anxiety and taking minimal antidepressants, so this is gonna be an interesting 24 hours.
On our Facebook fan page Karing for Keegan we have asked followers to wear green tomorrow in support of Keegan and our family. You can upload the pics of you and your family or pets in green to our page or send them to me at chupp.beth@gmail.com. I will showcase you after our scans.
Last but not least if you are a praying person, we ask for you prayers for patience and peace as we put him under general anesthesia, wait for the 2 1/2 hour full brain and spine scan and then talk with Dr. Shih. We should find out preliminary results tomorrow after the scan and ask for more prayers that the cancer is gone from the radiation and that we can progress onto metronomic chemotherapy.
I feel like I am asking a lot of you guys. I believe in the power of prayer, I always have. I hope you do too!
This post is gonna be short. We have an MRI tomorrow 10/20. I having been praying without ceasing. Any cancer patient or their family will tell you that MRI/CTs or other testing will bring out anxiety like never before. You live from scan to scan and the closer you get to the next scan the worse the fear and anxiety grip you. I am there right now. I have weened myself off of my anti anxiety and taking minimal antidepressants, so this is gonna be an interesting 24 hours.
On our Facebook fan page Karing for Keegan we have asked followers to wear green tomorrow in support of Keegan and our family. You can upload the pics of you and your family or pets in green to our page or send them to me at chupp.beth@gmail.com. I will showcase you after our scans.
Last but not least if you are a praying person, we ask for you prayers for patience and peace as we put him under general anesthesia, wait for the 2 1/2 hour full brain and spine scan and then talk with Dr. Shih. We should find out preliminary results tomorrow after the scan and ask for more prayers that the cancer is gone from the radiation and that we can progress onto metronomic chemotherapy.
I feel like I am asking a lot of you guys. I believe in the power of prayer, I always have. I hope you do too!
(photo courtsey of : Whisper from the Heart)
Friday, October 7, 2011
BIG News!
On Sunday October 2nd. Grandma was playing with Keegan's feet and legs when she noticed something remarkable:
Keegan Moving His Legs from Keegansmommy09 on Vimeo.
Amazing Right!?!Keep the prayers coming, how wonderful would it be to prove the doctors by walking one day!
Keegan Moving His Legs from Keegansmommy09 on Vimeo.
Amazing Right!?!Keep the prayers coming, how wonderful would it be to prove the doctors by walking one day!
Monday, October 3, 2011
And that makes 57 gray hairs...
A lot has happened since my last post. BIG things, and some small but while I am still coming to terms with the fact that my child can not weight bear through his legs let alone even sit up much unassisted God has had some big plans for us.
On Thursday September 22 Keegan took his last dose of Dexamethasone (Steroids). We weened him so we didn't think much about it, you can't just come off this stuff cold turkey, there are many side effects both on a off of it that have to be watched. This was a happy day as we thought he would start to loose some of the "Steroid face" that many people have come to know and love {We get LOTS of comments about how cute his cheeks are}.
Friday September 23rd Keegan turned 2 years old! Holy Moley, I have a two year old! We had a pretty fun day minus the speech therapy session with Mrs. Toni but really even that wasn't too bad b/c Mrs. Patty got him a HUGE smiley face balloon that we played with while Mrs. Toni was messing with his mouth. We hung out at home most of the day and went to RiRa's (an Irish Pub) for his birthday. They were doing a "give back" night for us on his birthday with 20% of the total food sales of the day going to us!
We had a blast with Aunt M, Aunt Abby & her boyfriend and Grandma. We got home and he got to eat some of the cake I made him. I had hemmed a hawed about what kind of cake to purchase him and decided I wanted to go with the theme that my sisters and I grew up with. Every year before our birthday our mom would take us to the craft store and we got to pick out the Wilson Cake pan that we wanted for our birthday, I have found memories of the different cakes mom would make us.
So when I decided that is what we were going to do, I ventured to the different craft stores in our area in search of an Elmo pan; this kid LOVES his Elmo. Finally found it at Hobby Lobby. So Keegan had his very own homemade Elmo cake. We gave the whole cake to him to dig into but he HATES to get dirty so it was kind of a waste but we got some great pictures. We then opened gifts. Tons of people sent him cards and presents-THANK YOU to ALL!
After our little birthday celebration we gave Keegan a bottle and got him ready for bed. That is when we started to notice he was acting a bit off. He normally finishes his bottle in record setting time but this time he drank it pretty slowly and left just under half of the bottle unfinished. We laid him down for the night and thought he just had too much cake and wasn't really hungry.
On Saturday the 24th I went with my mom and sister to the 4H Craft Fair. He didn't act weird the whole morning so I thought maybe the bottle from the night before was a fluke. We came home and I put him down for a nap and when he woke up around 3 o'clock I noticed immediately that the area around the tip of his shunt was swollen. Within 15 minutes we were out the door on the way to the emergency room and a call was placed to the neurosurgeon on call at Riley.
::Warning, I may get a little livid about our ER visit in the section of the story that follows, I apologize up front::
We walked into the ER at 4pm. We got in immediately and were placed in a room. Our nurse, a big mass of a man, came into the room to go over why we were there, his meds, and usual "stuff". He got to the meds part and rattled off 3 drugs, one of which he is still on for his seizures and the other are kind of "as needed". When I told him he has a TON more drugs he is currently taking including antibiotics, anti fungals and other drugs he just shrugged and kept going {appalling piece #1}. Shortly there after the Doctor, if you want to call him that, came in. He looked at Keegan who was sitting up in the bed playing with Ry and said "Whoa"{appalling piece #2}. He saw his shunt and thought it was very infected looking (what we had to point out was that the part he thought was sooooo bad was actually the bulb of the shunt)---ANYWAY--He then said "who put that in" when I commented Dr. Ackerman at Riley he said "do you have a number for her?" I said yea and proceeded to hand him her business card from the little Rolodex I keep with me at all times.
He placed the call while we waited and a short time later came back into the room to tell us that the Resident on call at Riley said that if it a) wasn't red b) wasn't leaking c) he was acting normal d) didn't have a temp then there was nothing they could do {Appalling piece #3}. I was in shock. I knew there was something wrong and made a point to ask the doctor if they were just waiting for it to get worse. I said something to the effect of "well, we can catch this early enough that he doesn't have to be hospitalized BUT NO, its nothing" I was livid. By this time it was 4:30 and the doctor came back in the room to tell us he was gonna finish his paperwork, there was nothing they were going to do for us and to call Dr. Ackerman's office the following Monday.
I was pissed to say the least and appalled that they would send a child that can go from okay to not okay in the matter of a day back home. I will be having words and filing a complaint with the hospital yet again and taking him to the only other hospital in Evansville the next time something happens.
Sunday he woke up, Shunt was not any better or any worse and he continued to not be hungry. He would only take half his bottle and later on in the evening he started to vomit. My brain went into ::FREAK OUT MODE:: as I tried to tell myself there was NO way the cancer could come back already...right?!?!
I placed the 2nd call of the weekend to Dr. Ackerman's office on Sunday Evening and they again told me wait until the morning and give her office a call if the shunt didn't look better and he continued to throw up.
Soooo what do you think I did, yep that is right, I called them first thing Monday morning, Dr. Ackermans nurse scheduled an appointment for Keegan on Wednesday morning along with a CT and Shunt series. So Monday we played it cool and really didn't do anything to strenuous and Tuesday the same except I had an interview at JoAnn Fabrics at 9 in the morning. I applied a couple of weeks ago for a seasonal job. Nothing major just something to get me out of the house since the cooler days are coming and we wont be able to get out as much.
We left for Indy later in the afternoon arriving at our friend Christine's house around 7 or so. We went out to get some food then settled in for the night. I was exhausted and since we had to be at Riley between 730-800 for some labs for his Endocrinologist I wanted to get him and I to bed early.
Wednesday morning we got to Riley and got our blood work done but not without a vomiting spell of just stomach juices ...gross I know. Then we had the CT and Shunt Series done. After that we went up to see Dr. Ackerman. Long story short, and between much hemming and hawing on her part, she did a shunt tap. The pressure was fine. She then decided to turn his shunt down to 80 from 100, he has a programmable one. This will allow less pressure in his head and drain more fluid. We left there with strict directions to call the next day and let them know how he was doing.
Thursday morning around 3 am I gtubed a bottle (8oz) and 60 mL's of water. No sooner did I start the water than he was vomiting it up. You see he fell asleep at 5 pm on Wednesday and didn't wake up until 7am on Thursday so he hadn't eaten his late bottle. Sooooo when Dr. Ackerman's office opened at 8 I was on the phone updating them on his status. Almost immediately and without hesitation they told us in not so many words to get our happy butts up to the Riley ER. We would have another Shunt Series and CT done.
We checked into the ER right at 3pm Indy time. They got us in a room very quickly and got the CT and shunt series done and brought us back to our room. Dr. Smith, Dr. Ackerman's co worker, came down and told us the scans looked good. No swelling or gross changes from the scans the day before. Then Dr. Shih came in, off the clock, and was just talking with us about how he was 99% sure this wasn't tumor recurrence at this time. The ER resident then came in and told us they were going to go ahead and admit us for 23 hour observation since he wasn't eating. At this point they also decided to restart his steroids because he could be having some swelling (in his brain) and side effects from the steroid ween that was done the week before. They gave us 5mL's of the decadron while in the ER...and then we waited...for another 5 hours. What was the hold up you might ask.....well it was for the HEM/ONC Resident to come down and admit us......Then guess what....we waited nother hour for a "empty room".
We were finally settled into our room at 11pm on Thursday....yes 7 hours after we entered the ER. Keegan began eating regularly the next day. Thank Goodness for answered prayers! We ended up leaving Riley around 12:30 on Saturday afternoon with steroids on board and Keegan holding down food! We restarted the steroids and are going to take a much slower ween and at the first inclination of a problem I am supposed to go back to the last dose of steroids that we were on prior. It definitely scared me but I am soooo glad we had it checked out and he's feeling better.
As of today he is doing and actual normal. The shunt looks great and he continues to eat.....
Stay Tuned for a BIG Announcement!
On Thursday September 22 Keegan took his last dose of Dexamethasone (Steroids). We weened him so we didn't think much about it, you can't just come off this stuff cold turkey, there are many side effects both on a off of it that have to be watched. This was a happy day as we thought he would start to loose some of the "Steroid face" that many people have come to know and love {We get LOTS of comments about how cute his cheeks are}.
Friday September 23rd Keegan turned 2 years old! Holy Moley, I have a two year old! We had a pretty fun day minus the speech therapy session with Mrs. Toni but really even that wasn't too bad b/c Mrs. Patty got him a HUGE smiley face balloon that we played with while Mrs. Toni was messing with his mouth. We hung out at home most of the day and went to RiRa's (an Irish Pub) for his birthday. They were doing a "give back" night for us on his birthday with 20% of the total food sales of the day going to us!
We had a blast with Aunt M, Aunt Abby & her boyfriend and Grandma. We got home and he got to eat some of the cake I made him. I had hemmed a hawed about what kind of cake to purchase him and decided I wanted to go with the theme that my sisters and I grew up with. Every year before our birthday our mom would take us to the craft store and we got to pick out the Wilson Cake pan that we wanted for our birthday, I have found memories of the different cakes mom would make us.
So when I decided that is what we were going to do, I ventured to the different craft stores in our area in search of an Elmo pan; this kid LOVES his Elmo. Finally found it at Hobby Lobby. So Keegan had his very own homemade Elmo cake. We gave the whole cake to him to dig into but he HATES to get dirty so it was kind of a waste but we got some great pictures. We then opened gifts. Tons of people sent him cards and presents-THANK YOU to ALL!
After our little birthday celebration we gave Keegan a bottle and got him ready for bed. That is when we started to notice he was acting a bit off. He normally finishes his bottle in record setting time but this time he drank it pretty slowly and left just under half of the bottle unfinished. We laid him down for the night and thought he just had too much cake and wasn't really hungry.
On Saturday the 24th I went with my mom and sister to the 4H Craft Fair. He didn't act weird the whole morning so I thought maybe the bottle from the night before was a fluke. We came home and I put him down for a nap and when he woke up around 3 o'clock I noticed immediately that the area around the tip of his shunt was swollen. Within 15 minutes we were out the door on the way to the emergency room and a call was placed to the neurosurgeon on call at Riley.
::Warning, I may get a little livid about our ER visit in the section of the story that follows, I apologize up front::
We walked into the ER at 4pm. We got in immediately and were placed in a room. Our nurse, a big mass of a man, came into the room to go over why we were there, his meds, and usual "stuff". He got to the meds part and rattled off 3 drugs, one of which he is still on for his seizures and the other are kind of "as needed". When I told him he has a TON more drugs he is currently taking including antibiotics, anti fungals and other drugs he just shrugged and kept going {appalling piece #1}. Shortly there after the Doctor, if you want to call him that, came in. He looked at Keegan who was sitting up in the bed playing with Ry and said "Whoa"{appalling piece #2}. He saw his shunt and thought it was very infected looking (what we had to point out was that the part he thought was sooooo bad was actually the bulb of the shunt)---ANYWAY--He then said "who put that in" when I commented Dr. Ackerman at Riley he said "do you have a number for her?" I said yea and proceeded to hand him her business card from the little Rolodex I keep with me at all times.
He placed the call while we waited and a short time later came back into the room to tell us that the Resident on call at Riley said that if it a) wasn't red b) wasn't leaking c) he was acting normal d) didn't have a temp then there was nothing they could do {Appalling piece #3}. I was in shock. I knew there was something wrong and made a point to ask the doctor if they were just waiting for it to get worse. I said something to the effect of "well, we can catch this early enough that he doesn't have to be hospitalized BUT NO, its nothing" I was livid. By this time it was 4:30 and the doctor came back in the room to tell us he was gonna finish his paperwork, there was nothing they were going to do for us and to call Dr. Ackerman's office the following Monday.
I was pissed to say the least and appalled that they would send a child that can go from okay to not okay in the matter of a day back home. I will be having words and filing a complaint with the hospital yet again and taking him to the only other hospital in Evansville the next time something happens.
Sunday he woke up, Shunt was not any better or any worse and he continued to not be hungry. He would only take half his bottle and later on in the evening he started to vomit. My brain went into ::FREAK OUT MODE:: as I tried to tell myself there was NO way the cancer could come back already...right?!?!
I placed the 2nd call of the weekend to Dr. Ackerman's office on Sunday Evening and they again told me wait until the morning and give her office a call if the shunt didn't look better and he continued to throw up.
Soooo what do you think I did, yep that is right, I called them first thing Monday morning, Dr. Ackermans nurse scheduled an appointment for Keegan on Wednesday morning along with a CT and Shunt series. So Monday we played it cool and really didn't do anything to strenuous and Tuesday the same except I had an interview at JoAnn Fabrics at 9 in the morning. I applied a couple of weeks ago for a seasonal job. Nothing major just something to get me out of the house since the cooler days are coming and we wont be able to get out as much.
We left for Indy later in the afternoon arriving at our friend Christine's house around 7 or so. We went out to get some food then settled in for the night. I was exhausted and since we had to be at Riley between 730-800 for some labs for his Endocrinologist I wanted to get him and I to bed early.
Wednesday morning we got to Riley and got our blood work done but not without a vomiting spell of just stomach juices ...gross I know. Then we had the CT and Shunt Series done. After that we went up to see Dr. Ackerman. Long story short, and between much hemming and hawing on her part, she did a shunt tap. The pressure was fine. She then decided to turn his shunt down to 80 from 100, he has a programmable one. This will allow less pressure in his head and drain more fluid. We left there with strict directions to call the next day and let them know how he was doing.
Thursday morning around 3 am I gtubed a bottle (8oz) and 60 mL's of water. No sooner did I start the water than he was vomiting it up. You see he fell asleep at 5 pm on Wednesday and didn't wake up until 7am on Thursday so he hadn't eaten his late bottle. Sooooo when Dr. Ackerman's office opened at 8 I was on the phone updating them on his status. Almost immediately and without hesitation they told us in not so many words to get our happy butts up to the Riley ER. We would have another Shunt Series and CT done.
We checked into the ER right at 3pm Indy time. They got us in a room very quickly and got the CT and shunt series done and brought us back to our room. Dr. Smith, Dr. Ackerman's co worker, came down and told us the scans looked good. No swelling or gross changes from the scans the day before. Then Dr. Shih came in, off the clock, and was just talking with us about how he was 99% sure this wasn't tumor recurrence at this time. The ER resident then came in and told us they were going to go ahead and admit us for 23 hour observation since he wasn't eating. At this point they also decided to restart his steroids because he could be having some swelling (in his brain) and side effects from the steroid ween that was done the week before. They gave us 5mL's of the decadron while in the ER...and then we waited...for another 5 hours. What was the hold up you might ask.....well it was for the HEM/ONC Resident to come down and admit us......Then guess what....we waited nother hour for a "empty room".
We were finally settled into our room at 11pm on Thursday....yes 7 hours after we entered the ER. Keegan began eating regularly the next day. Thank Goodness for answered prayers! We ended up leaving Riley around 12:30 on Saturday afternoon with steroids on board and Keegan holding down food! We restarted the steroids and are going to take a much slower ween and at the first inclination of a problem I am supposed to go back to the last dose of steroids that we were on prior. It definitely scared me but I am soooo glad we had it checked out and he's feeling better.
As of today he is doing and actual normal. The shunt looks great and he continues to eat.....
Stay Tuned for a BIG Announcement!
Thursday, September 15, 2011
Grief and Grieving.
Yesterday was supposed to be a happy day.
Yesterday was supposed to be full of happiness and joy as our little boy finished his last radiation treatment and got to ring the bell at the Proton Beam Center.
For the most part yesterday was just that.
But as the day went on I got more and more uneasy and just generally not happy.
It culminated in an ugly grieving spell as I was getting ready to go to sleep last night. Ryan and I had just gotten home from our small group and headed to bed. My ear had been hurting and earlier in the day Ry told me to just put a little peroxide in my ear. Flash back to bed time. I asked Ryan where the Peroxide was. His simple reply "I think its under the sink."
It was those 6 simple words that threw me into to "grief mode." I thought to myself ::I don't know why::: we are never going to have to childproof the house because my "toddler" will not toddle around and get into things like cabinets, closets and drawers. This escalated to Oh MY GOODNESS my son is NEVER going to run around a playground and hop from the swing set to the slide. The tears started rolling and they were unstoppable.
I sobbed silently into my pillow about all this things my precious little boy that has fought sooooo hard against a horrible disease will never be able to experience. Today I have been thinking of that episode and why last night, was it that simple question that made me trip into this black hole?
I have been saying to the doctors, nurses, friends, and family "as long as my baby is here I don't care about the legs, he can still have a full, happy, productive life." Their reply is always along the lines of "of coarse he can and he will!"
Was that statement a front to make myself feel better? I don't know, I know I do genuinely believe that but why all of a sudden does the loss bother me so-is the depth of the paralyzation just hitting me? Is it the weening of the meds (my anti-depressant and anti-anxiety)? Is it getting ready to "be my time of the month?" Is it normal? I don't know, but what I do know is that I am hurting from deep in my soul.
I think of ALL things he will never be able to do like ride a bike, roller skate, play hide and seek, pump a swing higher and higher until he touches the sky....
Its crushing and I feel like I can't breath.
Yesterday was supposed to be full of happiness and joy as our little boy finished his last radiation treatment and got to ring the bell at the Proton Beam Center.
For the most part yesterday was just that.
But as the day went on I got more and more uneasy and just generally not happy.
It culminated in an ugly grieving spell as I was getting ready to go to sleep last night. Ryan and I had just gotten home from our small group and headed to bed. My ear had been hurting and earlier in the day Ry told me to just put a little peroxide in my ear. Flash back to bed time. I asked Ryan where the Peroxide was. His simple reply "I think its under the sink."
It was those 6 simple words that threw me into to "grief mode." I thought to myself ::I don't know why::: we are never going to have to childproof the house because my "toddler" will not toddle around and get into things like cabinets, closets and drawers. This escalated to Oh MY GOODNESS my son is NEVER going to run around a playground and hop from the swing set to the slide. The tears started rolling and they were unstoppable.
I sobbed silently into my pillow about all this things my precious little boy that has fought sooooo hard against a horrible disease will never be able to experience. Today I have been thinking of that episode and why last night, was it that simple question that made me trip into this black hole?
I have been saying to the doctors, nurses, friends, and family "as long as my baby is here I don't care about the legs, he can still have a full, happy, productive life." Their reply is always along the lines of "of coarse he can and he will!"
Was that statement a front to make myself feel better? I don't know, I know I do genuinely believe that but why all of a sudden does the loss bother me so-is the depth of the paralyzation just hitting me? Is it the weening of the meds (my anti-depressant and anti-anxiety)? Is it getting ready to "be my time of the month?" Is it normal? I don't know, but what I do know is that I am hurting from deep in my soul.
I think of ALL things he will never be able to do like ride a bike, roller skate, play hide and seek, pump a swing higher and higher until he touches the sky....
Its crushing and I feel like I can't breath.
Thursday, September 8, 2011
50/50
Today was one of those days that I just wish had turned out differently. From the get go it was not great. To start off we were scheduled at the Proton Center for an 8 o'clock session. Well, eight turned to eight thirty which turned to nine which finally turned to nine ten when Jeff came out to get us. Meanwhile, the whole time we were waiting Keegan was crying. See I think his internal clock is broken or malfunctioning. the last two days he has gotten up at 5:30 and 5:15 respectively which on "home time" is 4:30 and 4:15 for no apparent reason. So while we were waiting for our turn he was crying relentlessly; snot bubbles and all. I couldn't have been any happier to see Jeff's face and be taken back. My son was tired and hungry and couldn't understand why we were walking around the waiting room aimlessly.
After he was out and in recovery they couldn't find Dr. B for our weekly Doctor checkup. I was getting EXTREMELY Frustrated because I wanted to get done at clinic so we could get on the road to Indy so we could get back at a decent time. Ugh but anyway, Dr. B finally came in, he checked Keegs over from head to toe, literally and told us he would basically see us on the flip side, he is headed to the ATL next week for a conference and won't be in town for his last session. He only has 4 more to go-WAHOOOOOO!
I knew that the rest of the day would be long, if this was how the day was gonna start I could only imagine. On the way to Indy from Btown I stopped at Starbucks and got myself a Venti Pumpkin Spice Latte-it completed me and I felt soooo much better! We got to Riley at a decent time and no sooner than I poured Keegans Nutren into his bottle than Larissa called us back to the weigh station. As we were getting weighed (29.5 lbs), BP checked as well as temperature, Crissy, Robin and Sally came in cause they heard us and wanted to say hi. It was a big reunion in a small room!
Sally brought us down to wonderful room #9, I have received more bad news in this particular room than any other rooms in the clinic.....plus its very cold so needless to say=not my favorite room. She drew his blood, his ANC is well over 2200 which is fabulous and she sent Dr. Shih in. This is where I think I was thinking worse thoughts that what was coming out of the doctors mouth BUT in my defense I am trying to ween myself off some of my drugs (antidepressant & Anti anxiety mostly). So if it seems a little skewed you know why.
He came in looked at Keegan and we immediately began talking about "the future". In the cancer patients world the "future" consists from scan time to scan time. You can think outside that box, its weird you find yourself living from scan to scan praying and hoping with all your might you can make it to this date/occasion without anything major and so on.
Dr. Shih jumped right to that dreaded date, October 13th (its a Thursday for those of you concerned-I already checked). So MRI on October 13th, they can begin to tell how effective the radiation was and so on. Scanxiety has already set in. We then talked about the Metronomic Chemotherapy that Keegan will be on. It is a combination of 5 chemo drugs, given at home orally. Dr. Shih said some kids have seen great results with this certain protocol (Kieran Protocol) but since Keegan is in a "bracket"-if you will-all by himself we really don't know what we are doing. He is maxed out for his lifetime on high dose IV chemotherapy and radiation (you can let your heart sink a little...I did). So unless they come up with a new drug in case he relapses yet again we are SOL (for lack of a better term). We just hope and pray for no relapse.
Dr. Shih said at this point he gives him a 50/50. I am going to be positive and pray we are the 50 that survive. We have to, God would not have put this child through all this if it wasn't to life a long, healthy, productive life....right? That is what I am telling myself.
So D day is marked, from here we will hopefully move forward with metronomic chemo, inpatient rehab and getting this boy back into some sort of schedule....did I mention he will be 2 in like 2 weeks....where did the time go? Holy Cow!
After he was out and in recovery they couldn't find Dr. B for our weekly Doctor checkup. I was getting EXTREMELY Frustrated because I wanted to get done at clinic so we could get on the road to Indy so we could get back at a decent time. Ugh but anyway, Dr. B finally came in, he checked Keegs over from head to toe, literally and told us he would basically see us on the flip side, he is headed to the ATL next week for a conference and won't be in town for his last session. He only has 4 more to go-WAHOOOOOO!
I knew that the rest of the day would be long, if this was how the day was gonna start I could only imagine. On the way to Indy from Btown I stopped at Starbucks and got myself a Venti Pumpkin Spice Latte-it completed me and I felt soooo much better! We got to Riley at a decent time and no sooner than I poured Keegans Nutren into his bottle than Larissa called us back to the weigh station. As we were getting weighed (29.5 lbs), BP checked as well as temperature, Crissy, Robin and Sally came in cause they heard us and wanted to say hi. It was a big reunion in a small room!
Sally brought us down to wonderful room #9, I have received more bad news in this particular room than any other rooms in the clinic.....plus its very cold so needless to say=not my favorite room. She drew his blood, his ANC is well over 2200 which is fabulous and she sent Dr. Shih in. This is where I think I was thinking worse thoughts that what was coming out of the doctors mouth BUT in my defense I am trying to ween myself off some of my drugs (antidepressant & Anti anxiety mostly). So if it seems a little skewed you know why.
He came in looked at Keegan and we immediately began talking about "the future". In the cancer patients world the "future" consists from scan time to scan time. You can think outside that box, its weird you find yourself living from scan to scan praying and hoping with all your might you can make it to this date/occasion without anything major and so on.
Dr. Shih jumped right to that dreaded date, October 13th (its a Thursday for those of you concerned-I already checked). So MRI on October 13th, they can begin to tell how effective the radiation was and so on. Scanxiety has already set in. We then talked about the Metronomic Chemotherapy that Keegan will be on. It is a combination of 5 chemo drugs, given at home orally. Dr. Shih said some kids have seen great results with this certain protocol (Kieran Protocol) but since Keegan is in a "bracket"-if you will-all by himself we really don't know what we are doing. He is maxed out for his lifetime on high dose IV chemotherapy and radiation (you can let your heart sink a little...I did). So unless they come up with a new drug in case he relapses yet again we are SOL (for lack of a better term). We just hope and pray for no relapse.
Dr. Shih said at this point he gives him a 50/50. I am going to be positive and pray we are the 50 that survive. We have to, God would not have put this child through all this if it wasn't to life a long, healthy, productive life....right? That is what I am telling myself.
So D day is marked, from here we will hopefully move forward with metronomic chemo, inpatient rehab and getting this boy back into some sort of schedule....did I mention he will be 2 in like 2 weeks....where did the time go? Holy Cow!
To add a little salt to my wounds today, I filled out Keegan's disability paperwork and got an application from Dr. Shih for a permanent Handicapped placard from the license branch.....how depressing.
Thursday, September 1, 2011
The Ant
Brenda was almost halfway to the top of the tremendous granite cliff. She was standing on a ledge where she was taking a breather during this, her first rock climb. As she rested there, the safety rope snapped against her eye and knocked out hercontact lens. 'Great', she thought. 'Here I am on a rock ledge, hundreds of feet from the bottom and hundreds of feet to the top of this cliff, and now my sight is blurry.'
She looked and looked, hoping that somehow it had landed on the ledge. But it just wasn't there.
She felt the panic rising in her, so she began praying. She prayed for calm, and she prayed that she may find her contact lens.
When she got to the top, a friend examined her eye and her clothing for the lens, but it was not to be found. Although she was calm now that she was at the top, she was saddened because she could not clearly see across the range of mountains. She thought of the bible verse 'The eyes of the Lord run to and fro throughout the whole earth.'
She thought, 'Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me.'
Later, when they had hiked down the trail to the bottom of the cliff they met another party of climbers just starting up the face of the cliff. One of them shouted out, 'Hey, you guys! Anybody lose a contact lens?'
Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across a twig on the face of the rock, carrying it!
The story doesn't end there. Brenda's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption, 'Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You.'
I think it would do all of us some good to say, 'God, I don't know why You want me to carry this load. I can see no good in it and it's awfully heavy. But, if You want me to carry it, I will.'
God doesn't call the qualified, He qualifies the called.
Yes, I do love GOD. He is my source of existence and my Savior. He keeps me functioning each and every day Without Him, I am nothing, but with Him... I can do all things through Christ which strengthens me. (Phil. 4:13)
**My sister in law sent this to me via email and I thought it was just neat to share.
Tuesday, August 30, 2011
This & That
10 Days is all we have left for proton beam treatment. Can I get a YAHOOOOOOO! It hasn't been nearly as hard on Keegan as I had thought it would. I figured a lot more burns a lot more uncomfortableness (is that even a word?). He has been such a champ and with only 10 treatment of proton beam remaining you maybe left wondering what the next step is.
For us the next step is going to be metronomic chemotherapy . I am not sure when this is going to start but he can be on it for years. It's low doses of chemo given everyday at home that can be adjusted depending on how it affects him. From what I hear it may take a little bit to 'regulate' his dosages as they are not supposed to make a huge impact on his blood counts and ANC.
We will still go to Riley monthly and have regular scans to see what is going on in that little body of his. I don't think we have any MRI's coming up anytime soon. Radiation is still working in the body for up to a month after it is "finished" so I think they will give him at least a month before we see what we re looking at.
As for his legs and the movement or lack thereof. I am working with him daily with stretching so he doesn't get too tight. Our radiation oncologist holds out hope that one day with intense rehab he will be able to walk again; Dr. Shih is not so optimistic about that. The cancer has done the damage, we have tried to undo that damage and if it can't be reversed we will deal with it. He can still have a great quality of life in a wheelchair, my thought is he still would be here with us! To be clear, we did nothing to make him paralyzed. When the tumor came back int he T9-T10 area it came back rapidly in the spinal cord and damaged nerves and blocked his CSF. The radiation DID NOT make him paralyzed, it was the tumors growth that took that ability from him.
We are also going to be spending more time up at Riley/Methodist in Indy. Dr. Shih wants Keegan to be in an inpatient rehab setting for awhile to regain some of the strength he has lost due to the surgery, tumor and radiation. This will be tough, I am already preparing myself for those grueling days when I know Keegan is tired but for the better good we just have to push through........He deserves to have the best life possible at this point and nothing will stand in our way. I am not sure how long we will be "inpatient" but with intense rehab twice a day I figure at least a month...I could be wrong.
Well, I guess that is all I have to update for now. I have made some great friends here at Jill's House. Everyone is so friendly and willing to help one another, it is really amazing to see how people come together. I have grown to love this place and after our last 10 days will miss talking with all the moms in the kitchen, hanging out in our room watching Elmo and watching the older girls run around the house from the library down to the living room and back......
PS-Thanks for all your words of love and support on my open letter post. I really appreciate everyone who spoke up and solidified my feelings and fighting spirit! For those of you that normally post under anonymous and aren't rude or snarky maybe I will open that back up one day but for now you can find me at Karing for Keegan on Facebook .
With all my Love,
Sunday, August 28, 2011
Open Letter
This Blog is about Keegan and our life with its ups, downs, and everything in between. If you are an avid reader or just found us thank you for being a part of our life and supporting us. I have been stewing over this "Anonymous" comment for almost a week now and have just gotten to the point that I "think" I am cooled down enough to write an open letter to "Anonymous". If you don't know what I am talking about look at the first comment on this post. So here it goes.
Dear anonymous,
Unfortunately after an hour or so of research and numerous question to my blogger friends I stopped looking for your identity and started stewing in the cruel words you wrong on my blog, about my son and involving my family. I made a post of facebook about your cruel post which received 64 comments varying in support and the use of MANY 4 and 5 letter words about you.
(I don't even know if you are gonna read this post, and if you do too bad but I blocked anonymous post from here on out, so if you post, we will have to know your identity-kinda funny how one apple can ruin it for the rest huh).
Obviously you are not a parent and if you are may God bless your children for you lack of support, care, and the will to fight for what is best for them. Just by posting those few words people could learn a lot about you and the kind of person you are. I actually feel sorry for you anonymous because if you were placed in our situation kinda seems like you would miss out on a possibly great life for your child if you are willing to give up that quickly. What you may or may not realize as a parent is you will do ANYTHING for your child, and I mean A.N.Y.T.H.I.N.G, and that means going to the end of the world to make them happy and in our situation save a life.
What you don't know and many of my blog followers probably realize is I don't post every.single.detail about Keegans care plan and what choices we have and what we don't. Sometimes I do though, and when I do its not for you to judge nor anyone else, this is the place I come to tell OUR STORY, POST MY THOUGHTS, and LET OFF MY STEAM. Only my husband and myself along with our close family know what the walk we are walking and help in the decision making. Many families that I am close to with children that have cancer can sympathize, but since each case is individual and no one case is "worse" than the other. So they don't even know OUR walk.
Anonymous you have NO idea what you are talking about and have obviously never met my son. Every person my son has ever met is touched by him and his story. They are touched by his bright blue eyes and fall in love with him almost immediately. He is such a cool kid that if you did ever have the pleasure of meeting him I am sure you would realize just how special he is.
In closing I would like to make something perfectly, crystal clear. Keegan is not being put through hell. Proton Beam Radiation has minimal side effects and, as if its any of your business, our oncologist thinks it will actually save his life and rid him of this cancer. Shame on you for not knowing the whole story and blaming me for "putting my child through hell". I will say extra prayers for you because there is this lady named Karma and she is a REAL bitch, I hope she visits you one day and realize just how bad simple words can make one feel.
Yours Truly,
Keegan's Momma Bear
PS-
Dear anonymous,
Unfortunately after an hour or so of research and numerous question to my blogger friends I stopped looking for your identity and started stewing in the cruel words you wrong on my blog, about my son and involving my family. I made a post of facebook about your cruel post which received 64 comments varying in support and the use of MANY 4 and 5 letter words about you.
(I don't even know if you are gonna read this post, and if you do too bad but I blocked anonymous post from here on out, so if you post, we will have to know your identity-kinda funny how one apple can ruin it for the rest huh).
Obviously you are not a parent and if you are may God bless your children for you lack of support, care, and the will to fight for what is best for them. Just by posting those few words people could learn a lot about you and the kind of person you are. I actually feel sorry for you anonymous because if you were placed in our situation kinda seems like you would miss out on a possibly great life for your child if you are willing to give up that quickly. What you may or may not realize as a parent is you will do ANYTHING for your child, and I mean A.N.Y.T.H.I.N.G, and that means going to the end of the world to make them happy and in our situation save a life.
What you don't know and many of my blog followers probably realize is I don't post every.single.detail about Keegans care plan and what choices we have and what we don't. Sometimes I do though, and when I do its not for you to judge nor anyone else, this is the place I come to tell OUR STORY, POST MY THOUGHTS, and LET OFF MY STEAM. Only my husband and myself along with our close family know what the walk we are walking and help in the decision making. Many families that I am close to with children that have cancer can sympathize, but since each case is individual and no one case is "worse" than the other. So they don't even know OUR walk.
Anonymous you have NO idea what you are talking about and have obviously never met my son. Every person my son has ever met is touched by him and his story. They are touched by his bright blue eyes and fall in love with him almost immediately. He is such a cool kid that if you did ever have the pleasure of meeting him I am sure you would realize just how special he is.
In closing I would like to make something perfectly, crystal clear. Keegan is not being put through hell. Proton Beam Radiation has minimal side effects and, as if its any of your business, our oncologist thinks it will actually save his life and rid him of this cancer. Shame on you for not knowing the whole story and blaming me for "putting my child through hell". I will say extra prayers for you because there is this lady named Karma and she is a REAL bitch, I hope she visits you one day and realize just how bad simple words can make one feel.
Yours Truly,
Keegan's Momma Bear
PS-
Monday, August 22, 2011
We are Here.....B-town that is!
So I know I messaged that I would put our address out there so that if anyone wanted to write a letter or send an encouraging card you can do so. I could use some encouragement these days! So here it is:
Jill's House
C/o Beth Chupp Rm #202
751 E. Tamarack Tr
Bloomington IN 47408
I will be writing a longer poster later in the day but this is all I can muster after little sleep!
Saturday, August 20, 2011
Could it be, The light at the end of the Riley Tunnel??!?
We have been inpatient approximately 4 weeks and 1 day-Whao! That is 687 hours we have spent in Riley during this hospital stay. It has been a roller coaster of a ride coming in from NYC late on July 22nd in an emergent situation to Keegan loosing the ability to move his lower extremities and given massive amounts of steroids. Then went his Stooling and Peeing, the bowel issues that ensured, and subsequent traditional radiation followed by Proton Beam radiation (and being transferred everyday via ambulance for the last 2.5 weeks to Bloomington and back).
Through it all our doctors and nurses have been wonderful as always. We picked up right where we left off and even have met a few new friends. The hospital stays don't get easier per sei but its like coming home. You like to visit and catch up with some of these people and then you are ready to go home. Home is a place Keegan and I have not seen since July 8th, the day we left for Florida, with no inclination that a relapse of his relapse loomed in our near future.
Tomorrow should be the day that we have been waiting for. It should be the day that we are released back into the world that has not stopped although our own world seems to have. We will leave Riley and head down to Bloomington to our new "home" for 4 weeks more of radiation. While I am a little scared of the new experiences to come, Proton Beam is the only way for us to proceed and I will then put on my Big Girl Panties, suck it up and deal with being in yet another new place because we are trying to rid our son of the terrible disease that has taken his ability to probably ever walk again. We want/need/pray (etc) that this saves his life.
As we are loading up our car tomorrow and saying Goodbye to our home for the last month, I will remember that Hope is what resides and Riley and it is what I will carry with me to Bloomington. Hope is what I hang on to as I see the burns from Radiation taking their toll on my sweet 23 month olds spine and hope is what I cling to as we embark on yet another new journey because of C-A-N-C-E-R.
On a side note (and for those of you that don't already know) I am in the process of trying to write a book. A book about family, faith, and most importantly Keegan's fight. If you have any words of wisdom on how to tackle our story or even write a book and get it published in general I would appreciate an email to chupp {dot} beth @ gmail {dot} com .
Thanks for the never ending prayers and love!
Through it all our doctors and nurses have been wonderful as always. We picked up right where we left off and even have met a few new friends. The hospital stays don't get easier per sei but its like coming home. You like to visit and catch up with some of these people and then you are ready to go home. Home is a place Keegan and I have not seen since July 8th, the day we left for Florida, with no inclination that a relapse of his relapse loomed in our near future.
Tomorrow should be the day that we have been waiting for. It should be the day that we are released back into the world that has not stopped although our own world seems to have. We will leave Riley and head down to Bloomington to our new "home" for 4 weeks more of radiation. While I am a little scared of the new experiences to come, Proton Beam is the only way for us to proceed and I will then put on my Big Girl Panties, suck it up and deal with being in yet another new place because we are trying to rid our son of the terrible disease that has taken his ability to probably ever walk again. We want/need/pray (etc) that this saves his life.
As we are loading up our car tomorrow and saying Goodbye to our home for the last month, I will remember that Hope is what resides and Riley and it is what I will carry with me to Bloomington. Hope is what I hang on to as I see the burns from Radiation taking their toll on my sweet 23 month olds spine and hope is what I cling to as we embark on yet another new journey because of C-A-N-C-E-R.
Picture Courtesy of : TeriLee Jewerly
Once we are settled in in Bloominton I will give out the address of where we will be staying so if anyone would like to write words of wisdom or send cards of encouragement to brighten our room you can do so. We would greatly appreciate it!On a side note (and for those of you that don't already know) I am in the process of trying to write a book. A book about family, faith, and most importantly Keegan's fight. If you have any words of wisdom on how to tackle our story or even write a book and get it published in general I would appreciate an email to chupp {dot} beth @ gmail {dot} com .
Thanks for the never ending prayers and love!
Friday, August 12, 2011
3 weeks, Epic Fail, and a New Addiction
As of tonight around 11pm we will have been inpatient 3 weeks folks. Three whole friggin weeks we have been cooped up in our home away from home trying our hardest to eat semi normal and not spending too much money since we have no earthly clue how much this is going to all cost in the end.
When you think oh three weeks isn't all that bad, think about what Kee has endured. He has gone paralyzed, been NPO (no food intake) since July 31st, had 11 does of proton beam therapy which means 11 trips to Bloomington Via ambulance. He has had 2 CT's on his belly 1 week apart. He has also gone from a VERY high dose of steroids to a still high dose for his little body. Family has come and family has gone. Coffee dates with friends have been had as well as a night eating dinner on the canal with 2 glasses of Mascato instead of one. Its been a long 3 weeks and I fully anticipate being here for at least another full week (not to be a pessimist or anything). Oh and its been three long weeks of Elmo, Elmo and more Elmo.....if that is what makes him happy at this point, so be it!
So lets get on to my EPIC FAIL, epic fail is defined by Urban Dictionary as-a mistake of such monumental proportions that it requires its own term in order to successfully point out the unfathomable shortcomings of an individual or group (example: Jack: Uh, dude? I may or may not have wrecked 14 Ferraris with my moped after derailing a whole train carrying nothing but kittens and puppies... Jim: Epic Fail, Man. EPIC Fail). This individual or group would be myself.
So here is the scenario: Keeg's is laying in bed watching Elmo while being hooked up by foot to the heart/O2 monitor and also his central line is hooked up to TPN (remember food in a bag that goes through his blood for nutrients that costs somewhere in the ballpark of $1200 a bag...) YEA that TPN. I wanted snuggled time while watching Elmo in the big comfy recliner in our Stem Cell room. I go to pick him up making sure that I have not "compromised" any of his attachments and lift ever so gently only to snap his line in HALF!!! The TPN started leaking out of its end and bright RED blood spurting out the line that is connected into his heart. I immediately clamp off the heart end so he didn't bleed everywhere and had Anthony yell for my nurse since I was not close to the call button. Our nurse shows up, finds the clamp that flew off slides it on the line that is still bleeding since its attached to his heart and clamps it down. She turns off the pump and we gather ourselves.
The TPN has to be throw.away! I could have kicked myself-welp there goes $1200 down the drain because it could "possibly be tainted". We also had to redo his access port since it was broken and possibly tainted. Our wonderful nurse had no clue how to re access his port so we had to call in another nurse thus making me feel even worse, mind you I didn't actually mean to do this but I still felt bad. Keegs was crying, my heart was breaking and I felt bad on so many levels. So that is my epic fail. Ugh!
So onto my new addiction.......drum roll PLEASE........
When you think oh three weeks isn't all that bad, think about what Kee has endured. He has gone paralyzed, been NPO (no food intake) since July 31st, had 11 does of proton beam therapy which means 11 trips to Bloomington Via ambulance. He has had 2 CT's on his belly 1 week apart. He has also gone from a VERY high dose of steroids to a still high dose for his little body. Family has come and family has gone. Coffee dates with friends have been had as well as a night eating dinner on the canal with 2 glasses of Mascato instead of one. Its been a long 3 weeks and I fully anticipate being here for at least another full week (not to be a pessimist or anything). Oh and its been three long weeks of Elmo, Elmo and more Elmo.....if that is what makes him happy at this point, so be it!
So lets get on to my EPIC FAIL, epic fail is defined by Urban Dictionary as-a mistake of such monumental proportions that it requires its own term in order to successfully point out the unfathomable shortcomings of an individual or group (example: Jack: Uh, dude? I may or may not have wrecked 14 Ferraris with my moped after derailing a whole train carrying nothing but kittens and puppies... Jim: Epic Fail, Man. EPIC Fail). This individual or group would be myself.
So here is the scenario: Keeg's is laying in bed watching Elmo while being hooked up by foot to the heart/O2 monitor and also his central line is hooked up to TPN (remember food in a bag that goes through his blood for nutrients that costs somewhere in the ballpark of $1200 a bag...) YEA that TPN. I wanted snuggled time while watching Elmo in the big comfy recliner in our Stem Cell room. I go to pick him up making sure that I have not "compromised" any of his attachments and lift ever so gently only to snap his line in HALF!!! The TPN started leaking out of its end and bright RED blood spurting out the line that is connected into his heart. I immediately clamp off the heart end so he didn't bleed everywhere and had Anthony yell for my nurse since I was not close to the call button. Our nurse shows up, finds the clamp that flew off slides it on the line that is still bleeding since its attached to his heart and clamps it down. She turns off the pump and we gather ourselves.
The TPN has to be throw.away! I could have kicked myself-welp there goes $1200 down the drain because it could "possibly be tainted". We also had to redo his access port since it was broken and possibly tainted. Our wonderful nurse had no clue how to re access his port so we had to call in another nurse thus making me feel even worse, mind you I didn't actually mean to do this but I still felt bad. Keegs was crying, my heart was breaking and I felt bad on so many levels. So that is my epic fail. Ugh!
So onto my new addiction.......drum roll PLEASE........
That is all!
Tuesday, August 9, 2011
::Pity Party::
We had our CT today of the bowel after 7 days of rest (aka no food for my starving child). The CT showed the problem was getting better but wasn't where it needed to be yet soooooo where does that leave us you might ask.....good question......Stuck in the Hospital till at least next Wednesday if not later. Dr. Shih is starting him on TPN tomorrow evening to give him nutrition since he is clearly loosing weight and if you remember we had TPN back during transplant to supplement the nutrition that he couldn't keep down.
I am just really frustrated that we will be pent up in this little room for still another week while we are waiting for his bowel to heal. I know this is what is best for him but its hard on me. Ry goes back to Evansville during the week to work as much as he can and family comes up on the weekends but just so draining.....enough with my pity party I guess. I am gonna go sulk on my lovely, might I add comfy cot and read Room because Keegan is watching yet another Elmo movie :)
By the way the new Messenger came out and he is in it-right here (pages 6 & 7 to be exact!)
Thanks the for continued support!
I am just really frustrated that we will be pent up in this little room for still another week while we are waiting for his bowel to heal. I know this is what is best for him but its hard on me. Ry goes back to Evansville during the week to work as much as he can and family comes up on the weekends but just so draining.....enough with my pity party I guess. I am gonna go sulk on my lovely, might I add comfy cot and read Room because Keegan is watching yet another Elmo movie :)
By the way the new Messenger came out and he is in it-right here (pages 6 & 7 to be exact!)
Thanks the for continued support!
Monday, August 8, 2011
Since July 30th....
How is it already 8/8/11? I do not understand! Ugh, times flies when you sit in a hospital room all day and do NOTHING let me tell you!
So since the last time we talked we have had quite a few issues pop up. A week ago today we had a CT scan done after our "regular" radiation over at IU. The CT showed air in the wall of his bowel. The (the doctors) immediately made him NPO (no food) and wanted his bowel to rest for 7 full days. So that started the beginning of the hellish we we have just gotten through.
He wasn't pooping either and that was a real problem considering his bowel was irritated and we had been giving him meds to make him go. We upped the anty on Tuesday and started to give adult doses of Miralax in hopes that we could get things moving, later that night they added Senna to the mix (also a stimulator) but that nothing either.
By Thursday Proton Beam down in Bloomington was ready for us and we were carted down there early in the morning via ambulance. By this time he is cathed with Foley, has IV antibiotics running for whatever is going on in his bowel, and still hasn't pooped.
His first real day of Proton Beam went fine and without a hitch, if you don't count me taking a tumble out of the ambulance upon arrival in B-town. The radiation took a little longer than his normal radiation since they had to do a "dry run" before they turned the beam on. But it was pretty easy, he went under, had the radiation and they called us back before he awoke.
Friday morning came, still no poops. The decided to add another drug to our daily regimen and give it to him 3 times daily ontop of EVERYTHING else he was(is) still getting including steroids. We went to Bloomington and back Friday morning for radiation and all went smooth again PLUS I didn't fall out of the Ambulance! Keegan even got to pick out a toy from the toy wall (since he can't pick and we didn't see anything he could use we opted for a $10 I-tunes gift card to buy new apps for his I PAD).
By Friday night Keegan started pooping. I was never so happy to see poop in my entire life! I was so excited I started updating facebook accordingly and I apologize to anyone who thought this was too much. But when you have been waiting and waiting and waiting for something to happen and it finally does you are just sooooo relived that its happening. I began to wonder in my head if it was because of lack of feeling in the lower half of his body.
The pooping ensued all weekend and as of today I think we are the 11th or 12th poopy diaper. We had Proton Beam this morning and were back at Riley by 1:30 pm. Ryan's brother Scott is visiting from AZ so its been nice to have him around.
We had a mini family reunion this past weekend and his other brother and sister came down with their kids to visit with uncle Scott and to see Baby Keegan. It was so nice to catch up with everyone, all the kids are growing up so fast on me I can't even take it! (I started dating Ry 7 years ago now and my one niece was 1 at the time!)
The plan for the following week is this:
So since the last time we talked we have had quite a few issues pop up. A week ago today we had a CT scan done after our "regular" radiation over at IU. The CT showed air in the wall of his bowel. The (the doctors) immediately made him NPO (no food) and wanted his bowel to rest for 7 full days. So that started the beginning of the hellish we we have just gotten through.
He wasn't pooping either and that was a real problem considering his bowel was irritated and we had been giving him meds to make him go. We upped the anty on Tuesday and started to give adult doses of Miralax in hopes that we could get things moving, later that night they added Senna to the mix (also a stimulator) but that nothing either.
By Thursday Proton Beam down in Bloomington was ready for us and we were carted down there early in the morning via ambulance. By this time he is cathed with Foley, has IV antibiotics running for whatever is going on in his bowel, and still hasn't pooped.
His first real day of Proton Beam went fine and without a hitch, if you don't count me taking a tumble out of the ambulance upon arrival in B-town. The radiation took a little longer than his normal radiation since they had to do a "dry run" before they turned the beam on. But it was pretty easy, he went under, had the radiation and they called us back before he awoke.
Friday morning came, still no poops. The decided to add another drug to our daily regimen and give it to him 3 times daily ontop of EVERYTHING else he was(is) still getting including steroids. We went to Bloomington and back Friday morning for radiation and all went smooth again PLUS I didn't fall out of the Ambulance! Keegan even got to pick out a toy from the toy wall (since he can't pick and we didn't see anything he could use we opted for a $10 I-tunes gift card to buy new apps for his I PAD).
By Friday night Keegan started pooping. I was never so happy to see poop in my entire life! I was so excited I started updating facebook accordingly and I apologize to anyone who thought this was too much. But when you have been waiting and waiting and waiting for something to happen and it finally does you are just sooooo relived that its happening. I began to wonder in my head if it was because of lack of feeling in the lower half of his body.
The pooping ensued all weekend and as of today I think we are the 11th or 12th poopy diaper. We had Proton Beam this morning and were back at Riley by 1:30 pm. Ryan's brother Scott is visiting from AZ so its been nice to have him around.
We had a mini family reunion this past weekend and his other brother and sister came down with their kids to visit with uncle Scott and to see Baby Keegan. It was so nice to catch up with everyone, all the kids are growing up so fast on me I can't even take it! (I started dating Ry 7 years ago now and my one niece was 1 at the time!)
The plan for the following week is this:
- Proton Beam via ambulance tomorrow since we are still inpatient then a CT to see if the bowel conditions they were worried about have cleared up. We should then be able to start bottle feeding him again-THANK GOODNESS-he has lost a few pounds over the last week.
- We are slowly stepping his steroids down which I am hoping will take away some of the moodiness and hungryness.
- We will be taking out the Foley Cath and doing an in and out cath every 4 hours or so to empty his bladder and make sure its empty.
- We will continue proton beam this week every day but Friday, they are closed once a quarter for maintenance and that just so happens to fall on this coming Friday.
- Meanwhile we are continuing to watch his leg to see if he is getting any movement back.
- Hopefully we will be home this coming weekend and back to Bloomington and living at Jill's house by Monday if all goes well.
I also wanted to put this out there:
There is a Tupperware benefit being held in our honor
If you want to go to :here
and order Tupperware a portion of the proceeds will go to our family for Keegan.
and order Tupperware a portion of the proceeds will go to our family for Keegan.
Love
Saturday, July 30, 2011
Do I Dare title this post "Yet Another Plan?"
I wanted to start this post off with a beautiful song that really sticks with me these days:
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile
Peek-a-Boo! from Keegansmommy09 on Vimeo.
Smile though your heart is aching
Smile even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through for you
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile
Smile even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through for you
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile
Sorry if that made you all teary eyed, its just how I am living my life day to day; or minute by minute in some circumstances.
We have had a good couple days. Keegan seems to be annoyed (as he should be) that his legs aren't working. We had to go from whats called an "in and out Cath" to a "Foley" yesterday. Not last night but the night before since it was set for us to insert the cath every 6 hours, he just got too full and was WAY uncomfortable.It was decided later that morning that we would just cath him and leave it it as to put him through less torture.
This weekend we are just relaxing, no radiation like almost everyday last week and no big plans for scans or anything like that. Some family is coming to visit today and mom might be coming tomorrow. The biggest thing I am looking forward to today is going to get cupcakes at The Flying Cupcake Bakery, ummmmm how I love cuppy cakes!!!
Our "plan" for the week includes the following:
- Monday: Radiation at o'dark hundred (aka 7:30 am) then probably being released to home/Bloomington
- Tuesday: We could either be home home in Evansville or starting Proton Beam in Bloomington. This is the part that is yet up in the air. It usually takes 2 weeks to get everything in Bloomington set up to start radiation but Dr. B has worked till midnight at least 1 night I am aware of to get things going for Keegan so we don't loose precious time. If we are home home I am going to get a new tattoo with my birthday money (I turned 30 on the 13th of July). I have already contacted my "artist" and have an appointment for Tuesday evening.
- Wednesday: If we aren't in Bloomington yet, we will repack, and get our bearings after my OB appointment. Not to put too much of our business out on the inter webs but we would REALLY like Keeegan to know the love of a sibling and since we are having a little more trouble than we did with him, I am going to see Dr. Mann about where to go next since its been 6 months of charting and "doing the right stuff" according to his nurse.
- Thursday: If we don't start radiation in Bloomington on Tuesday this is our GO day. We start our 6 week protocol and will be living at Jill's house in Bloomington.......
So that is the "kinda plan". Every time I say we have a plan something else happens and the "plan" is thrown out the window so this is our "kinda plan"
I am going to leave you this morning with a cute video I took yesterday of Ryan and Keegan playing peek a boo. Keegan was in an exceptionally great mood yesterday and giggled more than he has in a week or so, I got some of it on video:'
Tuesday, July 26, 2011
The Best Laid Plans of Mice and Men Often go Astray
Lots of things have changed since my last post. On Saturday late afternoon, after my mom and Ryan left to go back to Evansville, I began to notice Keegan had stopped moving his legs. I did some playing around with them; tickling his toes, running my finger up and down his leg, etc. He didn't move his legs and barely moved his little toes. I freaked out cause that is what I do and called the nurse. Well, she didn't come right away so I thought what the heck I will make him a bottle, slide a chair over to his IV side of the bed and feed him. As soon as I picked him up his little legs were dead weight. I then held him like I always to do feed him and he started to scream (from pain is what I am thinking). I went to put him back in bed and try to get him to weight bear on his feet-NOTHING, his legs were like jello. I then placed another call to the nurse to tell her to get in our room right away.
A nurse came in, I showed her my concern and ran to grab our nurse who was just finishing up her lunch. They started trying to get him to move his legs and NOTHING. A few calls were made to Dr. Shih and Dr. Ackerman and a flurry of Nurses, Residents and Fellows quickly came in to assess the situation.
Dr. Ackerman, bless her heart, ran up a couple of flights of stairs, performed a neuro check and said the decrease in movement can be one of two things. Either the tumor is growing more into his spine and compressing it causing him not to be able to move his lower extremities OR it could be from the swelling that the tumor is causing. Either way its a bad situation.
Dr. Shih came in a short time later with a Grim look on his face telling us he was stopping all chemo and we were moving on to radiation ASAP and restarting HIGH doses of steroids to keep the swelling under control. He doesn't want to keep him on steroids long because of long term side effects but we are trying to relieve pressure to this very sensitive area. ::On a side note, we not only are watching his legs but also his bladder and kidneys because with the loss of the lower extremities we run a risk of problems arising if he cant empty his bladder::
Dr. Shih called Dr. B, the pediatric radiation oncologist, out of Bloomington and wanted to get going on radiation that evening. The only problem being Keegan had just inhaled a 4 oz bottle and since kids are sedated for CTS, MRI's and radiation that posed a serious risk to aspiration when waking up.
A decision was made on Sunday that he would start "regular" radiation at 9:30 am on Monday morning in hopes to try to get some leg movement back. Time is of the essence and we needed to get moving. He went NPO at Midnight Sunday and we were down in the IU cancer pavilion at 9:30 Monday morning.
So as you can see "the best laid plans of mice and men often go astray. We thought we had a plan of attack and that all changed in a few mere hours. So what next is what you maybe thinking......Welll......
Today we are going via ambulance around 1 est to the Proton Beam Clinic in Bloomington Indiana to get set up for treatment, we will then come back to Riley where Keegan will get "regular" radiation Wednesday, Thursday and Friday morning. Relax on Saturday and Sunday while be monitored and one more round of "regular" radiation on Monday morning.
Hopefully after today and this week hanging out at Riley getting radiated Bloomington will be ready for us and we can leave Riley to head to Bloomington early next week. This is what he hope to happen.
We do know that his leg movement is time sensitive but the radiation will cause the tumor and surrounding area to swell before it starts to go down so we might not see movement right away. Dr. Ackerman is pessimistic about regaining any leg control at all and in a weird way I can handle that if we can simply get rid of this damn cancer.
A nurse came in, I showed her my concern and ran to grab our nurse who was just finishing up her lunch. They started trying to get him to move his legs and NOTHING. A few calls were made to Dr. Shih and Dr. Ackerman and a flurry of Nurses, Residents and Fellows quickly came in to assess the situation.
Dr. Ackerman, bless her heart, ran up a couple of flights of stairs, performed a neuro check and said the decrease in movement can be one of two things. Either the tumor is growing more into his spine and compressing it causing him not to be able to move his lower extremities OR it could be from the swelling that the tumor is causing. Either way its a bad situation.
Dr. Shih came in a short time later with a Grim look on his face telling us he was stopping all chemo and we were moving on to radiation ASAP and restarting HIGH doses of steroids to keep the swelling under control. He doesn't want to keep him on steroids long because of long term side effects but we are trying to relieve pressure to this very sensitive area. ::On a side note, we not only are watching his legs but also his bladder and kidneys because with the loss of the lower extremities we run a risk of problems arising if he cant empty his bladder::
Dr. Shih called Dr. B, the pediatric radiation oncologist, out of Bloomington and wanted to get going on radiation that evening. The only problem being Keegan had just inhaled a 4 oz bottle and since kids are sedated for CTS, MRI's and radiation that posed a serious risk to aspiration when waking up.
A decision was made on Sunday that he would start "regular" radiation at 9:30 am on Monday morning in hopes to try to get some leg movement back. Time is of the essence and we needed to get moving. He went NPO at Midnight Sunday and we were down in the IU cancer pavilion at 9:30 Monday morning.
So as you can see "the best laid plans of mice and men often go astray. We thought we had a plan of attack and that all changed in a few mere hours. So what next is what you maybe thinking......Welll......
Today we are going via ambulance around 1 est to the Proton Beam Clinic in Bloomington Indiana to get set up for treatment, we will then come back to Riley where Keegan will get "regular" radiation Wednesday, Thursday and Friday morning. Relax on Saturday and Sunday while be monitored and one more round of "regular" radiation on Monday morning.
Hopefully after today and this week hanging out at Riley getting radiated Bloomington will be ready for us and we can leave Riley to head to Bloomington early next week. This is what he hope to happen.
We do know that his leg movement is time sensitive but the radiation will cause the tumor and surrounding area to swell before it starts to go down so we might not see movement right away. Dr. Ackerman is pessimistic about regaining any leg control at all and in a weird way I can handle that if we can simply get rid of this damn cancer.
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