Just wanted to post the video of Landon with Miles2Give and Jake that ran on the 10pm news here in Atlanta! More on the visit with Landon to come...
http://www.myfoxatlanta.com/story/22961750/runners-log-3200-miles-fight-sarcoma-cancer
Atlanta News, Weather, Traffic, and Sports | FOX 5
Tuesday, July 30, 2013
Wednesday, July 17, 2013
Wallow, anybody?
Kait:
It's been 9 months of "the Jake show." Ethan has to be aware that Jake gets more attention most of the time, yet he holds absolutely no ill will toward him. There are streaks of jealousy but it doesn't seem like any more than normal brothers experience. (There's that word again...normal.) In the past few weeks, Ethan has been acting out, talking back, and just being mean in general. Not to Jake, to me. We have tried every type of reasonable punishment to no avail. My Mom asked him why he is being so mean to Mommy and his response was, "because she doesn't like me." Stab me in the heart. How could my sweet angel think I don't like him?? I am so sick of the affects that cancer has had on our family! So, after bawling my eyes out about it, I did some google-ing and read that it is healthy to let your children see you cry once in a while. It teaches them that expressing emotion is normal. I do my best not to let them see me cry in the past 9 months but it got me wondering, should I have been doing this all along? I took Ethan to church with me on Sunday since Jake wasn't feeling well and Randy stayed home with Jake and Aubrey. We were having fun together. He was happy and his usual sweet self until the service started. Then the behavior began. I tried to correct him lovingly and with positive reinforcement, but it only resulted in more obstinacy and rudeness. I finally just ignored him because I wasn't getting anywhere and it was almost time for him to leave with the children's group. After church was over I met up with Ethan and the children's group leader and found that he had a hard time then as well. Randy talked with him when we got home and I decided it was a good time to turn on the water works and test out this crying theory. It was pretty easy for me to draw up some emotion- imagine that? As soon as he saw me crying he started crying. And he cried...and cried...and cried. I don't know if he was upset because he had upset me or because he just really needed to let out some pent up emotion. Either way, he has been back to being my angel ever since. It does make total sense to me because when I am full to the brim with stress, anger, and emotion, I am quick to anger. But when I let it out it's like a fresh start. Like a little of my burden is no longer mine.
Sometimes I feel like wallowing in self pity and I wonder how we got here. Why did this happen? How did this happen? What are we going to do when it's over? I can't answer any of them. And then, it is so hard to read about the kids who are dying every day. They went through similar chemo regimen hells and still lost. All the time we are connected with another family who is going through the same thing we are going through. It is amazing that something that is supposedly so rare is everywhere we look. It's not just kids fighting Ewings either. There are people in their early 20's and older fighting just as hard as Jake. All the time we talk about hoping that Jake doesn't remember most of this. I mean what do you remember from being three or four? I said that same sentiment to someone who has a loved one fighting, except his loved one is older and a parent. The reply I heard was something like "unfortunately if my loved one doesn't make it, her children are so young that they won't remember her." I have thought about this conversation so many times and every time is makes me sick with heartache. Then I realize that if Jake didn't make it, Aubrey wouldn't remember him, and Ethan's memories would be vague at best. I don't know why I'm sharing these gut wrenching things right now. Maybe I'm just in a mood to wallow. Cancer invokes a world of rollercoasters, except that you don't have to choice of whether or not to ride. Through all of these ups and downs we've learned and grown. We manage the day-to-day, put on our brave face, and live life to the fullest, the best that we can. I can't say that it gets easier because I don't know yet. I just only hope that it does. #jakesfight
It's been 9 months of "the Jake show." Ethan has to be aware that Jake gets more attention most of the time, yet he holds absolutely no ill will toward him. There are streaks of jealousy but it doesn't seem like any more than normal brothers experience. (There's that word again...normal.) In the past few weeks, Ethan has been acting out, talking back, and just being mean in general. Not to Jake, to me. We have tried every type of reasonable punishment to no avail. My Mom asked him why he is being so mean to Mommy and his response was, "because she doesn't like me." Stab me in the heart. How could my sweet angel think I don't like him?? I am so sick of the affects that cancer has had on our family! So, after bawling my eyes out about it, I did some google-ing and read that it is healthy to let your children see you cry once in a while. It teaches them that expressing emotion is normal. I do my best not to let them see me cry in the past 9 months but it got me wondering, should I have been doing this all along? I took Ethan to church with me on Sunday since Jake wasn't feeling well and Randy stayed home with Jake and Aubrey. We were having fun together. He was happy and his usual sweet self until the service started. Then the behavior began. I tried to correct him lovingly and with positive reinforcement, but it only resulted in more obstinacy and rudeness. I finally just ignored him because I wasn't getting anywhere and it was almost time for him to leave with the children's group. After church was over I met up with Ethan and the children's group leader and found that he had a hard time then as well. Randy talked with him when we got home and I decided it was a good time to turn on the water works and test out this crying theory. It was pretty easy for me to draw up some emotion- imagine that? As soon as he saw me crying he started crying. And he cried...and cried...and cried. I don't know if he was upset because he had upset me or because he just really needed to let out some pent up emotion. Either way, he has been back to being my angel ever since. It does make total sense to me because when I am full to the brim with stress, anger, and emotion, I am quick to anger. But when I let it out it's like a fresh start. Like a little of my burden is no longer mine.
Sometimes I feel like wallowing in self pity and I wonder how we got here. Why did this happen? How did this happen? What are we going to do when it's over? I can't answer any of them. And then, it is so hard to read about the kids who are dying every day. They went through similar chemo regimen hells and still lost. All the time we are connected with another family who is going through the same thing we are going through. It is amazing that something that is supposedly so rare is everywhere we look. It's not just kids fighting Ewings either. There are people in their early 20's and older fighting just as hard as Jake. All the time we talk about hoping that Jake doesn't remember most of this. I mean what do you remember from being three or four? I said that same sentiment to someone who has a loved one fighting, except his loved one is older and a parent. The reply I heard was something like "unfortunately if my loved one doesn't make it, her children are so young that they won't remember her." I have thought about this conversation so many times and every time is makes me sick with heartache. Then I realize that if Jake didn't make it, Aubrey wouldn't remember him, and Ethan's memories would be vague at best. I don't know why I'm sharing these gut wrenching things right now. Maybe I'm just in a mood to wallow. Cancer invokes a world of rollercoasters, except that you don't have to choice of whether or not to ride. Through all of these ups and downs we've learned and grown. We manage the day-to-day, put on our brave face, and live life to the fullest, the best that we can. I can't say that it gets easier because I don't know yet. I just only hope that it does. #jakesfight
 |
| Ethan, our little "photo bombing" goofball |
Tuesday, July 9, 2013
Not My Child
Randy: I remember Kait coming home from doing a wedding (photographer) a few years ago and telling me about being bothered by one of the children in the family. It appeared that the young girl had some sort of cancer. I guess it's pertinent that Kait was and is a very talented photographer, and in her previous life actually did more than just take pictures of our smiling children. I don't remember exactly when it was, but it was after Ethan was born because we talked about how much it bothered her to see a young person (I believe this girl was between 10-13 yrs) and then imagine it being our child. (foreshadowing)
I know...this almost seems made up....but it really happened. She brought it up last week and I had honestly forgotten about it. We were discussing the reasons why it's so tough to raise awareness, why it can be so difficult to get people outside of the inner circle of close friends and family to do more than like a status on facebook. When Kait told that story and we talked about it it all made sense that in many cases it's just too difficult to face as a parent. The idea of imagining your innocent little baby with something this awful can be a bit overwhelming and make you lose a bit of sleep. It's just easy to say "not my child".
Over the past few months we've definitely seen the best that exists in our society. From people making financial contributions that we know don't have the extra money to do so, fundraisers where businesses forgo profits to help our family, to people just offering time to help watch our kids so we could enjoy a night to regain our sanity. It would also be safe to say that we have seen our fair share of friends abandon us, people we've known for many years never reach out at all, and even some family members have distanced themselves from the reality of this situation. I think for those people it's just too difficult to expose yourself to the thought that this could happen to your own little angel.
What's the point of all of this? I honestly don't know, but we have to find a way to get those with their fingers in their ears and eyes closed to open up and see this reality. Children are dying....everyday...and the ones that survive are left with long term side effects. The pictures of cute bald kids smiling with a stuffed animal and a balloon isn't a reality. If anything they do a disservice to how brutal these treatments are. The Aflac Cancer Center is an inspiring place with an amazing staff and the strongest people you will ever meet, but it's also a depressing place. You watch young children with the life sucked out of them, parents walking around like zombies...and it's always full (there are about 50 rooms between the BMT and hematology/oncology wings). It's a place where hope and optimism can turn into anger, pain and despair. We have tried to share the good and bad of our journey so far, but we have so far to go to bring the reality of this struggle to the mainstream where it needs to be.
No it's not your child...and it's really disturbing to imagine it being your child....but
It's wasn't our child either....
I know...this almost seems made up....but it really happened. She brought it up last week and I had honestly forgotten about it. We were discussing the reasons why it's so tough to raise awareness, why it can be so difficult to get people outside of the inner circle of close friends and family to do more than like a status on facebook. When Kait told that story and we talked about it it all made sense that in many cases it's just too difficult to face as a parent. The idea of imagining your innocent little baby with something this awful can be a bit overwhelming and make you lose a bit of sleep. It's just easy to say "not my child".
Over the past few months we've definitely seen the best that exists in our society. From people making financial contributions that we know don't have the extra money to do so, fundraisers where businesses forgo profits to help our family, to people just offering time to help watch our kids so we could enjoy a night to regain our sanity. It would also be safe to say that we have seen our fair share of friends abandon us, people we've known for many years never reach out at all, and even some family members have distanced themselves from the reality of this situation. I think for those people it's just too difficult to expose yourself to the thought that this could happen to your own little angel.
What's the point of all of this? I honestly don't know, but we have to find a way to get those with their fingers in their ears and eyes closed to open up and see this reality. Children are dying....everyday...and the ones that survive are left with long term side effects. The pictures of cute bald kids smiling with a stuffed animal and a balloon isn't a reality. If anything they do a disservice to how brutal these treatments are. The Aflac Cancer Center is an inspiring place with an amazing staff and the strongest people you will ever meet, but it's also a depressing place. You watch young children with the life sucked out of them, parents walking around like zombies...and it's always full (there are about 50 rooms between the BMT and hematology/oncology wings). It's a place where hope and optimism can turn into anger, pain and despair. We have tried to share the good and bad of our journey so far, but we have so far to go to bring the reality of this struggle to the mainstream where it needs to be.
No it's not your child...and it's really disturbing to imagine it being your child....but
It's wasn't our child either....
Tuesday, July 2, 2013
If the boot fits...
Jake had an appointment to see his surgeon this morning to get a new boot for his leg. He has x-rays to make sure that the screws and plates are still intact, and everything looks "as expected". There hasn't been much healing yet and I guess there won't be much until he finishes chemo. Unfortunately, the chemo stunts the rate of healing.
He didn't have to get a new boot, but they did make some adjustments to his to try to make it more comfortable for him. Jake still wanted to take it off on the ride home so I guess it's just going to be something we struggle with until he can walk (sometime in November).
Jake is feeling pretty well today and we are thankful for that. Please keep praying for our baby...we know it's helping.
Last night, there was a fundraiser for us at Classic Bowl in Rome, GA. Jake's counts were high enough for us to be able to attend and we had a blast. Great family and friends were there to support Jake in his fight, as well as to bowl! Here is a link to the blog that the photographer posted last night.
http://aprilingramphotography.blogspot.com/2013/07/a-benefit-for-jakejakes-fight-against.html
Didn't she do an awesome job? In spite of all the bad we are still making good memories to last a lifetime. Take that cancer!
He didn't have to get a new boot, but they did make some adjustments to his to try to make it more comfortable for him. Jake still wanted to take it off on the ride home so I guess it's just going to be something we struggle with until he can walk (sometime in November).
Jake is feeling pretty well today and we are thankful for that. Please keep praying for our baby...we know it's helping.
Last night, there was a fundraiser for us at Classic Bowl in Rome, GA. Jake's counts were high enough for us to be able to attend and we had a blast. Great family and friends were there to support Jake in his fight, as well as to bowl! Here is a link to the blog that the photographer posted last night.
http://aprilingramphotography.blogspot.com/2013/07/a-benefit-for-jakejakes-fight-against.html
Didn't she do an awesome job? In spite of all the bad we are still making good memories to last a lifetime. Take that cancer!
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