Friday, August 30, 2013
Sunday, August 25, 2013
Can "If" become "When"?
Kait:
We start sentences with the word "if" all throughout the day. If it isn't raining we can go outside...if you do your homework you can watch tv...if I eat healthy at lunch I can have dessert...if if if. In our house we have all of those "ifs" plus the ones that are not so normal. First, the one hiding in the back of our minds- If Jake beats cancer ______(insert tearful sentiment here). And the current one- If Jake's counts are high enough then he can get chemo. Unfortunately, that "if" didn't pan out this week. His platelets were 23 and they needed to be 75. His hemoglobin was 5.9 so he needed a transfusion. What was supposed to be his last inpatient treatment turned out to be just a day spent in the clinic receiving blood. (Donate blood if you can!) Disappointing to say the least. I try so hard to go with the flow but it is so frustrating when there is nothing I can do to control the situation. I'm so ready to be done with chemo that I can taste it. The finish line is just out of reach, we can almost touch it! For now I will have to control myself by not let this setback cloud my emotions. Jake, however, was ecstatic to get to go home earlier than planned.
His oncologist postponed chemo for a week to let his body recover and hopefully this means he will be able to handle this last round with no problem. Once he completes the 17th round he will have one more clinic appointment where his port will be accessed and he'll receive vincristine (chemo) for the last time. That tentative date is September 5, 2013. Two weeks after that, on September 19, 2013, he will have all of his scans. Provided his scans are clear, we will schedule his port removal. We are planning to have a party to celebrate and will share the details once he completes round 17. I am a big believer in not celebrating too early so we want to make sure he is able to receive chemo next week before we share details.
I want to stop the ifs. I want to feel comfortable saying when. When Jake finishes chemo...when Jake beats cancer. Unfortunately with this type of cancer there is no remission so we won't know if he beat it for many many years down the road. You either got rid of all of the cancer cells or you didn't. And they can lay dormant for an undeterminable amount of time. At the five year mark we can start to relax a little. Until then we can walk on eggshells or we can make the choice to live positively and accept that our "when" is finally here. It won't be easy but I don't want to live my life in fear.
We start sentences with the word "if" all throughout the day. If it isn't raining we can go outside...if you do your homework you can watch tv...if I eat healthy at lunch I can have dessert...if if if. In our house we have all of those "ifs" plus the ones that are not so normal. First, the one hiding in the back of our minds- If Jake beats cancer ______(insert tearful sentiment here). And the current one- If Jake's counts are high enough then he can get chemo. Unfortunately, that "if" didn't pan out this week. His platelets were 23 and they needed to be 75. His hemoglobin was 5.9 so he needed a transfusion. What was supposed to be his last inpatient treatment turned out to be just a day spent in the clinic receiving blood. (Donate blood if you can!) Disappointing to say the least. I try so hard to go with the flow but it is so frustrating when there is nothing I can do to control the situation. I'm so ready to be done with chemo that I can taste it. The finish line is just out of reach, we can almost touch it! For now I will have to control myself by not let this setback cloud my emotions. Jake, however, was ecstatic to get to go home earlier than planned.
 |
| Green popsicles (hence the green teeth) keep him happy |
I want to stop the ifs. I want to feel comfortable saying when. When Jake finishes chemo...when Jake beats cancer. Unfortunately with this type of cancer there is no remission so we won't know if he beat it for many many years down the road. You either got rid of all of the cancer cells or you didn't. And they can lay dormant for an undeterminable amount of time. At the five year mark we can start to relax a little. Until then we can walk on eggshells or we can make the choice to live positively and accept that our "when" is finally here. It won't be easy but I don't want to live my life in fear.
Sunday, August 11, 2013
Things you don't want to hear
From Randy:
I can't tell you how tired I am of these monsters....sure you're sick of me bitching about it...but you need to read this. Tonight I went with Ethan to visit Jake and Kait at Egleston....everything was okay while we visited. On the way out the room across the hall I could hear the child in there SCREAMING in pain....screaming for someone to help him (he is 10 years old)....Kait said he had been ...pretty much vomiting since they got there Thursday afternoon. We stopped and said hi to Colton (another Ewings fighter) and his wonderful parents Scott and Kristi. He has been in the hospital for over a week now with a blood infection and it in ICU (sedated and on a ventilator). He just got moved to the oncology wing today. He pretty much spent his birthday half sedated, and is currently just trying to keep his head up and hold things in his stomach.
We can't sit back and just "like" statuses and pray....we have to do something. We can help end this cycle of pain. We can stop these kids' suffering....there has to be a better way. They are being treated with drugs that originated when Nixon was in office. Do you realize how insane it is that in a society where technology is moving at the speed of light that we HAVE ONLY ONE NEW DRUG to show for the past 25 years of research in pediatric cancers?
I want to scream sometimes...and get angry as f**k...tonight it took everything in my soul to not cry my eyes out when I got to the car...but I didn't want Ethan to see me like that. It's hard enough to know that he heard and saw the same things that I did tonight...and he's old enough to understand that it wasn't normal.
Why is this normal for treatment of these diseases....why do we accept these barbaric treatments for our children? Why is it okay to inject our kids with drugs that originated as parts of mustard gas (see origins of Doxorubicin)?
CHILDHOOD CANCER ISN'T CUTE BALD KIDS HOLDING BALLOONS....
I'm so angry right now.....
We can't sit back and just "like" statuses and pray....we have to do something. We can help end this cycle of pain. We can stop these kids' suffering....there has to be a better way. They are being treated with drugs that originated when Nixon was in office. Do you realize how insane it is that in a society where technology is moving at the speed of light that we HAVE ONLY ONE NEW DRUG to show for the past 25 years of research in pediatric cancers?
I want to scream sometimes...and get angry as f**k...tonight it took everything in my soul to not cry my eyes out when I got to the car...but I didn't want Ethan to see me like that. It's hard enough to know that he heard and saw the same things that I did tonight...and he's old enough to understand that it wasn't normal.
Why is this normal for treatment of these diseases....why do we accept these barbaric treatments for our children? Why is it okay to inject our kids with drugs that originated as parts of mustard gas (see origins of Doxorubicin)?
CHILDHOOD CANCER ISN'T CUTE BALD KIDS HOLDING BALLOONS....
I'm so angry right now.....
From Kait: I am so glad that this is the last night of Jake's 5-day chemo. 5 days is a long time to hear sounds of crying, throwing up, screaming, and pain- and they aren't even coming from my kid! I am so thankful that this time Jake is only crying is when he has to drink his medicine. Of course he will cry in pain and fear when it is time to de-access his port tomorrow. If all goes as planned Jake will only have his port accessed two more times...EVER! I can't wait for Jake's healing to be complete. Then maybe Randy and I can start healing our hearts from the agony we have been living for the past 10 months.
We are watching a lot of movies, going to the playroom, and visiting the gift shop to pass the time and he is in a pretty good mood. He keeps asking when Thanksgiving is because that is tentatively when he will be cleared to start walking again. He says he is tired of crawling and doesn't like hopping on his walker because he isn't fast enough to play with his brother. We are asking for prayers to keep the cancer away and specifically for complete healing in his leg so that he can walk in November. We know there is a chance that it won't heal like it needs to, but we are remaining optimistic. Jake says "hi!"
Tuesday, July 30, 2013
On the news!
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
http://www.myfoxatlanta.com/story/22961750/runners-log-3200-miles-fight-sarcoma-cancer
Atlanta News, Weather, Traffic, and Sports | FOX 5
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
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| 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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