Kait (Jake's Mommy):
We keep hearing of children becoming seriously ill or even dying from infections and complications from the effects of chemo. It is amazing how in the blink of an eye your child can go from playing to fighting for his life. Jake is doing well today, but nothing is promised and at any moment he could fall ill as well. Every day I pray to God to keep watch over Jake. Please don't let the rug get swept out from under us. I don't ever want to be told to "say our goodbyes" to him because he may not make it through the night. I hate having these thoughts on a daily basis. I hate walking on eggshells and living in fear. I can't wait to tell Jake that he is done getting chemo...done with shots...done with finger pokes. Can't you just imagine the smile on his face when we get to tell him that? I'm so thankful that we are getting closer to being able to with every passing day. I know he is ready to be done going to the hospital too. I think he must have dreams about going there because he wakes up and the first thing he says is "Do I have to go to an appointment today?" It sucks that he has to go through this. A four year old, let alone any child, should not have to worry about getting poked and prodded on a daily basis. It's safe to say that this "cancer" thing is getting old.
So there's my long overdue rant, now hopefully I can more forward. Jake has four more treatments to complete until his protocol is finished. Today is day 6 (day one is the first day he received chemo this round) and his counts will get to a low point any time between now and day 10. He goes in for a clinic appointment to check blood counts on Monday and he will also get a (day 8) Vincristine (chemo drug) push while we are there. This will be a short appointment but nonetheless, he will not be happy about going. The boot he has been wearing on his left leg has become too big for him and it starts sliding off and rubbing on his foot almost immediately after we put it on. It has gotten to where he doesn't even want to wear it because it is uncomfortable. So, I called his surgeon and scheduled an appointment to get him refitted for a new boot this Tuesday. Hopefully that will solve the problem of getting him to keep the boot on. I get so worried about him playing on the floor and crawling around with nothing protecting his leg. Our house is pretty full since we have two adults, three kids, two dogs, and two cats living here. It's a zoo and it's never quiet, but we wouldn't change it for the world. But, it does mean that there is always someone running around who could step on or trip over Jake's leg. Should I let him play and have a good time with his brother and sister, or try to keep him in a protective bubble? I want to let them play because it is such a sweet sound hearing them laugh. But would it be worth having something happen to his leg? I don't know the answer, but I think it is important for the kids to have fun together. I only hope that the way that I take care of them and the choices that I make for them are the right ones.
Saturday, June 29, 2013
Thursday, June 20, 2013
#jakesfight
Kait:
Every night I lie in bed and so many things come to mind that I think, oh I should write about that! And then I fall asleep and it's gone. So before I forget about today...
It was an early morning. Jake and I had to leave by 7:30am to get to Atlanta for his 13th chemo treatment. After a ton of traffic and a detour, we arrived 10 minutes late for his appointment at 9:30am. The whole way he went back and forth between talking about random 4-year-old things and saying "but, I really don't feel like going to the hospital today!" He asked, as he always does, "do they have to do my port?" We have a strict no lie policy because he is really too smart to be tricked. Then he cries and says again that he just doesn't feel like going. Well, neither do I. But we're going to get this one under our belts and then we'll only have four more to go! His favorite triage nurse (Ms. Jamilla) does her job quickly and distracts him by blowing bubbles. He still screams during the finger poke, but the bubbles resume and he recovers very quickly. Next stop is the clinic room where we go over all his medications and when he last took them, and is he pooping? The pooping is still an issue for him. He is so emotionally scarred from the pain he experienced while having mucusitis that he still holds it as long as physically possible. We are baffled by his strength...let's leave it at that.
His counts came back from the lab and I was really surprised to find out that his hemoglobin was only 7.8 and his platelets were 38. The way they describe it to me is that if you or I had that low number for hemoglobin that we wouldn't get out of bed. Jake looked a little pale but he certainly didn't act like he was low on energy. His white blood count was over 11 so we aren't concerned about that number and we chose not to do a transfusion for the hemoglobin number because he is acting fine and we can assume that the number is on the rise. All of this means that he couldn't be admitted for chemo today. I am getting much better about it (because I have no choice) but I still don't like it when plans change so I'm a little disappointed. Not just because the plans changed, but I wanted to get another round over with. Oh well, can't control it and we do what is best for Jake.
A friend that we met throughout the Ewings sarcoma journey was planning to come up to the hospital today so that we could meet in person for the first time. Her name is Carol Basso and she is with 1 million 4 anna, a Ewings sarcoma charity based out of Texas. Her beautiful daughter, Anna, passed away two years ago from this horrible disease and yet Carol continues to offer support, prayers, friendship, love, and encouragement to fellow Ewings families. For meeting only for the first time we feel like we've known her forever. Jake played a card game with Carol and he cracked us up with his enthusiasm for the game.
My cousin, Meaghan, mentioned something to my brother, John, about how when you're pregnant you notice all the other pregnant women and think, gee is everyone pregnant? Then she said it seems the same way with cancer. I don't know if any of you have experienced it as well, but we have found so many kids battling the same cancer as Jake, as well as many other forms. Were we just blind to it before?
Our friend, Jennifer, was getting a ring fixed at a local jeweler recently and the jeweler saw her "Jake's Fight" bracelet and was taken aback. It turns out that he had Ewings in his ribs and spine when he was 12 years old and is now 59 years old. He's a survivor...a long term survivor! We went by the shop he works at today to meet him and he told us about his treatment and the late effects that it caused. But mostly he just empathized with what we are going through. It is such a good feeling to have tangible evidence that this disease can be beaten. Of course we are always reminded about how fragile life is when we hear of two children passing from Ewings this week. Things become routine and normal for us and it's easy to let the seriousness of Jake's cancer get pushed to the back burner. Plus, if you thought about it all the time you would be an emotional wreck! Then when you read that someone else's baby died from the same disease it's like a smack to the back of the head. This is serious! Yes, he's doing well but at some point all of these kids are too. Once the reality knocks me upside the head I feel a strange sense of urgency to spread awareness. I hope that you do too and want to share Jake's story with anyone who will listen. He's just one boy, but to us he is one remarkable boy, and certainly not the last who will be diagnosed with cancer. We created a website about Jake's fight so that his journey can be easily shared in one place. It is www.jakesfight.com and you can find lots of information there. Please visit the website and share it with everyone you know!
Most of you know that Jake has an older brother, Ethan and a younger sister, Aubrey and that I'm a photographer. I have been on hiatus since last November, but I still make time to take pictures of my kids. I took this one of Ethan around his 6th birthday last month. Isn't he handsome? :) He has been at my parents house for the past 10 days and he comes home tomorrow. We have missed him so much.
Every night I lie in bed and so many things come to mind that I think, oh I should write about that! And then I fall asleep and it's gone. So before I forget about today...
It was an early morning. Jake and I had to leave by 7:30am to get to Atlanta for his 13th chemo treatment. After a ton of traffic and a detour, we arrived 10 minutes late for his appointment at 9:30am. The whole way he went back and forth between talking about random 4-year-old things and saying "but, I really don't feel like going to the hospital today!" He asked, as he always does, "do they have to do my port?" We have a strict no lie policy because he is really too smart to be tricked. Then he cries and says again that he just doesn't feel like going. Well, neither do I. But we're going to get this one under our belts and then we'll only have four more to go! His favorite triage nurse (Ms. Jamilla) does her job quickly and distracts him by blowing bubbles. He still screams during the finger poke, but the bubbles resume and he recovers very quickly. Next stop is the clinic room where we go over all his medications and when he last took them, and is he pooping? The pooping is still an issue for him. He is so emotionally scarred from the pain he experienced while having mucusitis that he still holds it as long as physically possible. We are baffled by his strength...let's leave it at that.
His counts came back from the lab and I was really surprised to find out that his hemoglobin was only 7.8 and his platelets were 38. The way they describe it to me is that if you or I had that low number for hemoglobin that we wouldn't get out of bed. Jake looked a little pale but he certainly didn't act like he was low on energy. His white blood count was over 11 so we aren't concerned about that number and we chose not to do a transfusion for the hemoglobin number because he is acting fine and we can assume that the number is on the rise. All of this means that he couldn't be admitted for chemo today. I am getting much better about it (because I have no choice) but I still don't like it when plans change so I'm a little disappointed. Not just because the plans changed, but I wanted to get another round over with. Oh well, can't control it and we do what is best for Jake.
A friend that we met throughout the Ewings sarcoma journey was planning to come up to the hospital today so that we could meet in person for the first time. Her name is Carol Basso and she is with 1 million 4 anna, a Ewings sarcoma charity based out of Texas. Her beautiful daughter, Anna, passed away two years ago from this horrible disease and yet Carol continues to offer support, prayers, friendship, love, and encouragement to fellow Ewings families. For meeting only for the first time we feel like we've known her forever. Jake played a card game with Carol and he cracked us up with his enthusiasm for the game.
Our friend, Jennifer, was getting a ring fixed at a local jeweler recently and the jeweler saw her "Jake's Fight" bracelet and was taken aback. It turns out that he had Ewings in his ribs and spine when he was 12 years old and is now 59 years old. He's a survivor...a long term survivor! We went by the shop he works at today to meet him and he told us about his treatment and the late effects that it caused. But mostly he just empathized with what we are going through. It is such a good feeling to have tangible evidence that this disease can be beaten. Of course we are always reminded about how fragile life is when we hear of two children passing from Ewings this week. Things become routine and normal for us and it's easy to let the seriousness of Jake's cancer get pushed to the back burner. Plus, if you thought about it all the time you would be an emotional wreck! Then when you read that someone else's baby died from the same disease it's like a smack to the back of the head. This is serious! Yes, he's doing well but at some point all of these kids are too. Once the reality knocks me upside the head I feel a strange sense of urgency to spread awareness. I hope that you do too and want to share Jake's story with anyone who will listen. He's just one boy, but to us he is one remarkable boy, and certainly not the last who will be diagnosed with cancer. We created a website about Jake's fight so that his journey can be easily shared in one place. It is www.jakesfight.com and you can find lots of information there. Please visit the website and share it with everyone you know!
Most of you know that Jake has an older brother, Ethan and a younger sister, Aubrey and that I'm a photographer. I have been on hiatus since last November, but I still make time to take pictures of my kids. I took this one of Ethan around his 6th birthday last month. Isn't he handsome? :) He has been at my parents house for the past 10 days and he comes home tomorrow. We have missed him so much.
Monday, June 17, 2013
Dear 4-year-old Jake
Dear Jake,
You are now four years old and you remind us of it daily! You are so funny, everything you do is because you're four now. "I am super fast because I'm four." "I can play longer now because I'm four." etc. etc. You say the funniest things and you are very smart. There are a millions adjectives I could use to describe you! You are sweet, brave, smart, funny, curious, sensitive, loving, trusting, creative...I could go on all day. I hate to be writing your birthday letter and have to include the word "cancer" but, you are who you are in some ways because of your fight against cancer. You are so strong and mature, yet sometimes I wonder if you even know that you are fighting for your life. Daddy and I are doing everything we can to keep your life as normal as possible so that when you read this letter some day you will wonder what it was like because you can't remember life ever being abnormal.
You have grown so much during the year of being three, it's remarkable. You are now a little boy and you try so hard to be like your brother and you are a wonderful big brother as well. You still have a hot temper and you love to throw things when you are mad. You have become quite the Daddy's boy, although you are very sweet to me as well. Your independence is inspiring as you insist on doing most things for yourself even though you can't walk and haven't been able to for almost four months now. I can't wait to see how much you change and grow over the next year. You are so excited to be starting pre-k in the Fall and we are very excited for you. You are a very special boy and your smile can change the world. We love you so much.
Mommy
You are now four years old and you remind us of it daily! You are so funny, everything you do is because you're four now. "I am super fast because I'm four." "I can play longer now because I'm four." etc. etc. You say the funniest things and you are very smart. There are a millions adjectives I could use to describe you! You are sweet, brave, smart, funny, curious, sensitive, loving, trusting, creative...I could go on all day. I hate to be writing your birthday letter and have to include the word "cancer" but, you are who you are in some ways because of your fight against cancer. You are so strong and mature, yet sometimes I wonder if you even know that you are fighting for your life. Daddy and I are doing everything we can to keep your life as normal as possible so that when you read this letter some day you will wonder what it was like because you can't remember life ever being abnormal.
You have grown so much during the year of being three, it's remarkable. You are now a little boy and you try so hard to be like your brother and you are a wonderful big brother as well. You still have a hot temper and you love to throw things when you are mad. You have become quite the Daddy's boy, although you are very sweet to me as well. Your independence is inspiring as you insist on doing most things for yourself even though you can't walk and haven't been able to for almost four months now. I can't wait to see how much you change and grow over the next year. You are so excited to be starting pre-k in the Fall and we are very excited for you. You are a very special boy and your smile can change the world. We love you so much.
Mommy
Saturday, June 8, 2013
A few things
1. We have talked about some guys running across the country for sarcoma research...Miles2Give...well Sunday is a pretty special day for us...for them...and for Jake. You see Sunday is Jake's 4th birthday, and on that day Miles2Give will be running in Jake's honor. It's awesome that these guys are running for our hero...for our hero! But, I want us to make a difference for the future.
...
Sarcomas are the forgotten cancer...there are 40+ types and most have very little research money devoted to them. As a matter of fact last year the National Cancer Institute devoted a measly $40 million to research all of them....that's it. They have very tough protocols for treatment and some types have low survival rates.
Ewing's Sarcoma has a 10 year survival of 50%....yep....that's right....Jake has a 50% chance of making it to high school. If he had been diagnosed as metastic....that would be more like 10%. There are others....some with lower survival rates.
We can change this....by donating just a little....
Do it in Jake's honor....do it for the people that will be devastated by these cancers.....do it for those that will lose their fights this year from these monsters. We can make a difference....one dollar at a time!
2. Here is an update about Jake's story in list form. Just to catch anyone up who is new to our blog :)
11/5/12- A biopsy confirmed that Jake has Ewing's Sarcoma, localized to his left tibia.
2/26/13- After 6 rounds of chemotherapy, Jake had limb salvage surgery with an allograft 9 (cadaver bone)
Jake is being treated at Children's Healthcare of Atlanta, Egelston, at the AFLAC Cancer Center.
There is a donation account set up for him under "Jacob J. Russell Donation Fund" at Wells Fargo Bank, as well as an online fundraiser at http://www.youcaring.com/medical-fundraiser/help-jake-fight-ewing-s-/49239 All fund raised are used toward travel and other treatment related expenses.
Jake loves getting mail and can receive mail at 817 Lopez Ln, Monroe, GA 30655
Kait:
Jake is receiving chemo as I type this. It is day 3 and he's doing great. I found out something amazing yesterday while we were talking about riding bikes. I said "Remember last summer you used to ride so fast down the hill on your tricycle? Then you got sick and you haven't been able to in a while." Jake said, "sick??" He had a very puzzled look on his face and I realized that he doesn't even know he's sick. I guess it never crossed his mind to question everything he has gone through, and it never occurred to him that it was because he got sick. In some ways I am very glad about this, and I hope that cancer is just a distant memory for him. Mostly, I am just so proud of him.
...
Sarcomas are the forgotten cancer...there are 40+ types and most have very little research money devoted to them. As a matter of fact last year the National Cancer Institute devoted a measly $40 million to research all of them....that's it. They have very tough protocols for treatment and some types have low survival rates.
Ewing's Sarcoma has a 10 year survival of 50%....yep....that's right....Jake has a 50% chance of making it to high school. If he had been diagnosed as metastic....that would be more like 10%. There are others....some with lower survival rates.
We can change this....by donating just a little....
Do it in Jake's honor....do it for the people that will be devastated by these cancers.....do it for those that will lose their fights this year from these monsters. We can make a difference....one dollar at a time!
2. Here is an update about Jake's story in list form. Just to catch anyone up who is new to our blog :)
11/5/12- A biopsy confirmed that Jake has Ewing's Sarcoma, localized to his left tibia.
2/26/13- After 6 rounds of chemotherapy, Jake had limb salvage surgery with an allograft 9 (cadaver bone)
, two plates, and fifteen screws. He is not allowed to bear weight (a.k.a. walk) for nine months. That takes us to around Thanksgiving 2013.
3/11/13- On Jake's Mom's birthday, we received the news that his tumor had 100% necrosis, meaning that chemo killed it and there was no evidence of disease in the leg.
6/7/13- A CT scan of the chest reveals no heart or lung damage from chemo, as well as no evidence of cancer!
He is projected to complete chemotherapy by September 2013.
3/11/13- On Jake's Mom's birthday, we received the news that his tumor had 100% necrosis, meaning that chemo killed it and there was no evidence of disease in the leg.
6/7/13- A CT scan of the chest reveals no heart or lung damage from chemo, as well as no evidence of cancer!
He is projected to complete chemotherapy by September 2013.
Jake is being treated at Children's Healthcare of Atlanta, Egelston, at the AFLAC Cancer Center.
There is a donation account set up for him under "Jacob J. Russell Donation Fund" at Wells Fargo Bank, as well as an online fundraiser at http://www.youcaring.com/medical-fundraiser/help-jake-fight-ewing-s-/49239 All fund raised are used toward travel and other treatment related expenses.
Jake loves getting mail and can receive mail at 817 Lopez Ln, Monroe, GA 30655
Kait:
Jake is receiving chemo as I type this. It is day 3 and he's doing great. I found out something amazing yesterday while we were talking about riding bikes. I said "Remember last summer you used to ride so fast down the hill on your tricycle? Then you got sick and you haven't been able to in a while." Jake said, "sick??" He had a very puzzled look on his face and I realized that he doesn't even know he's sick. I guess it never crossed his mind to question everything he has gone through, and it never occurred to him that it was because he got sick. In some ways I am very glad about this, and I hope that cancer is just a distant memory for him. Mostly, I am just so proud of him.
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| Jake meeting Atlanta Braves pitcher, Tim Hudson |
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