I'm sitting here in the waiting room before Jake is being sedated for his PET/CT scans and reflecting on the past 10 months. What a wild ride it has been....I still remember November 5th like it was yesterday. I remember 2 days later sitting down in a room with Kait and Dr. Katzenstein and we learned about the monster that was going to try to kill our son, and the plan for stopping it. We left the hospital and stared at the "roadmap" that was before us.....17 inpatient chemo stays....outpatient trips....constant trips to the ER....blood counts....surgery....and on and on....
Overwhelmed seemed inadequate to describe how we felt....
So what do you do when you're facing an absolute mountain that you have no choice but to climb?
You start climbing.....
We didn't climb alone though. It was evident early on that we weren't alone. We learned what true friendship was, as time and time again people we knew and were just getting to know stepped up to help. They offered fundraisers, time, food, anything to help make our day to day climb a little easier. We learned what family means. We saw family sacrifice their time and energy to help us take care of our children so I could continue school and keep my shop open. Time and time again when things seemed their darkest we had each other and our network of friends and family to pick us up.
In the next 2 hours we will reach the top of the mountain and step over the peak. We don't know what the other side holds, but we know that no matter what we have an amazing network of friends and family to help us along the way. I said after the Chick Fil A fundraiser in November that "Thank You" seemed inadequate, and this is still true. I don't know what expression means more than complete gratitude, but that applies here. Thank you for allowing our family to not feel alone during what has been without a doubt the darkest period of our lives.
No matter where this journey continues, we know that Jake's Fight is not done. We will continue to advocate for others. Cancer picked a fight with us, and fight we will. The stakes are too high and the lives are too precious to walk away now.
Showing posts with label miles2give. Show all posts
Showing posts with label miles2give. Show all posts
Tuesday, September 17, 2013
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
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....
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.
 |
| Jake meeting Atlanta Braves pitcher, Tim Hudson |
Sunday, May 5, 2013
The Gorilla in the Room
Randy: There haven't been that many posts from us the past few weeks, and there are a couple of reasons for that. I guess both of us feel like we haven't had much new happening and so we assume the other has something to blog about. Anyways here we are, 2 days home from treatment number 10. We're past the halfway point....time flies when you're having fun....RIGHT?...(crickets). I have come to grips with what brought some of the anger and emotion in the last blog out. You see since this all started in October we have had a constant barrage of dates and deadlines to look forward to. Since November 5th when Jake was diagnosed there has been a gorilla in the room that we were distracted from, which is his mortality, and our future as a family. We didn't realize it but we are at the point in the treatment plan when we start to wait. I mean there are plenty of chemo treatments left, but those are things we've dealt with, old news. The next new and excited chapter in this story is the ending. We find out next that either Jake beats this and goes on to live a normal life or......the other ending. That has been a tough reality to face, and to put it in other terms is the gorilla just stood up and introduced himself. We realize this has led to a lot of tension internally, and it has spilled into our relationships with each other, our friends, and anyone else close to us over the past few weeks.
Kait had been taking Jake to all of his 2 day treatments because I have school on Thursdays and work both nights, but this time I offered to take him and close the shop because Ethan had an art show at school. I have been to Egleston many times, and it has a weird "home" feeling now, but I hadn't been with him during a clinic admission yet, so this was new territory for me. It started simple enough but quickly went downhill as he pooped his pants just after getting into a clinic room. Now I need to say that Jake is completely potty trained, but since his nasty mucositis he is very scared to poop, so he holds it......for more than a week at a time. This is important because when "it" happens....IT HAPPENS. I had to take him to the lobby bathroom and it was down his legs, so his pants had to be cut off (can't get cast wet), all over his wheelchair. I finally got him back into the room with some shorts on and we waited. About 10 minutes later he informs me that he needs to pee, so I carry him to the triage station bathroom....
and the day got much worse...
As I picked him up I didn't realize that his tube was caught under the base of his IV pole and it pulled it out.....completely. Fluids were already running so it bled like a head wound. It was down his legs, on his sock, all over me, and the only thing I could do was pull the emergency help tether on the wall. About 6 nurses came to help and get the access needle completely removed. I took him back to the room and he calmed down after a while. Of course then he had to have his port accessed again so he had to deal with that a second time (his least favorite part of the hospital). This has happened two other times, once by each of us, but this was apparently the worst because every time I went to pick him up or move him the rest of the day or Friday he would whimper and say "Please don't hurt me daddy".....ouch.
Anyways the rest of the stay was pretty uneventful, as Jake met some new friends in the playroom and I met some more parents to share stories with. When in the room he watched Team Umizoomi and Toy Story 3. This was a lighter chemo load as the "red devil" (doxorubicin) was not on the schedule this time so we were discharged by lunchtime on Friday. Jake takes everything in stride and smiles no matter what. This quote seems fitting for his predisposition to everything:
Sunday, April 14, 2013
Tired...and a little jaded
I have to apologize...I realize that most of the time my blog posts are bitch sessions....if that bothers you....best thing to do would be to hit "back on your browser".
Randy: I wish I never knew about pediatric cancer. I mean that...I really do at this point. On October 15th we were shown the door...and it looked scary enough just peering inside for a few seconds....then on November 5th we were shoved through and the door was locked behind us. I've learned more about myself, our society, and people in the 5 months since that day than the 33 years that preceded it. These have been both good and bad lessons, seeing the best of us that I talked about back in December, and seeing some less than desirable behaviors. People being incredibly generous, both with assistance and more importantly time. People willing to put their own lives on hold to help our family enjoy some slivers of normalcy. I've also seen people withdraw from us, whether because the friendship wasn't very strong to begin with, or the fear of not knowing what to say or do.
I can give a piece of advice....not knowing what to say and saying the wrong thing is WAAAAYYYYY better than disappearing when your friend needs you.
I wish we had never been shoved through this door. I wish I could go back to October 14th....and be ignorant to this world. I wish Jake had just simply broken his leg....how great that sounds now. I remember thinking that Saturday night "wow how awful if our little boy fractured his leg?"....lol...yeah that would be horrible now. Now I get to watch Jake, Ethan, and Aubrey get robbed of a normal childhood on a daily basis. Jake now has completely irrational anger, Ethan is acting out, and Aubrey is just too young to say "hey why the hell is my brother always crying?"....but I'm sure she is thinking it.
I used to cry a lot....it helped. When I felt the need I had some things that would bring the emotion out. The song by Phillip Phillips "Home" was my first outlet. As time has passed I learned the story of Anna Basso, who courageously fought Ewing's only to succumb to this piece of shit disease before her life could really get going. Her favorite was "Float On" by Modest Mouse. That is my favorite song to run to, and it was the song I chose to have playing when I finished the half marathon in March. None of these work now....I honestly feel like I need a good "release" on a regular basis...but the emotions just won't come out anymore.
I want to yell....but nothing comes out....
This is taking its toll on me...my marriage....my ability to concentrate....my health. I don't eat well anymore...I drink more than I should....I don't sleep enough....Running used to be my outlet...but I can't seem to stay healthy long enough to keep that hobby up. I get angry way too fast now....I threw eggs all over the kitchen and then promptly put my fist through a wall this morning......really? Am I fucking 14 years old...? How pathetic do you have to be to take your anger out like that??
I know that which does not kill us makes us stronger...maybe this is killing me? Is it okay to feel angry...? Okay then....FUCK YOU CANCER!!!!
Randy: I wish I never knew about pediatric cancer. I mean that...I really do at this point. On October 15th we were shown the door...and it looked scary enough just peering inside for a few seconds....then on November 5th we were shoved through and the door was locked behind us. I've learned more about myself, our society, and people in the 5 months since that day than the 33 years that preceded it. These have been both good and bad lessons, seeing the best of us that I talked about back in December, and seeing some less than desirable behaviors. People being incredibly generous, both with assistance and more importantly time. People willing to put their own lives on hold to help our family enjoy some slivers of normalcy. I've also seen people withdraw from us, whether because the friendship wasn't very strong to begin with, or the fear of not knowing what to say or do.
I can give a piece of advice....not knowing what to say and saying the wrong thing is WAAAAYYYYY better than disappearing when your friend needs you.
I wish we had never been shoved through this door. I wish I could go back to October 14th....and be ignorant to this world. I wish Jake had just simply broken his leg....how great that sounds now. I remember thinking that Saturday night "wow how awful if our little boy fractured his leg?"....lol...yeah that would be horrible now. Now I get to watch Jake, Ethan, and Aubrey get robbed of a normal childhood on a daily basis. Jake now has completely irrational anger, Ethan is acting out, and Aubrey is just too young to say "hey why the hell is my brother always crying?"....but I'm sure she is thinking it.
I used to cry a lot....it helped. When I felt the need I had some things that would bring the emotion out. The song by Phillip Phillips "Home" was my first outlet. As time has passed I learned the story of Anna Basso, who courageously fought Ewing's only to succumb to this piece of shit disease before her life could really get going. Her favorite was "Float On" by Modest Mouse. That is my favorite song to run to, and it was the song I chose to have playing when I finished the half marathon in March. None of these work now....I honestly feel like I need a good "release" on a regular basis...but the emotions just won't come out anymore.
I want to yell....but nothing comes out....
This is taking its toll on me...my marriage....my ability to concentrate....my health. I don't eat well anymore...I drink more than I should....I don't sleep enough....Running used to be my outlet...but I can't seem to stay healthy long enough to keep that hobby up. I get angry way too fast now....I threw eggs all over the kitchen and then promptly put my fist through a wall this morning......really? Am I fucking 14 years old...? How pathetic do you have to be to take your anger out like that??
I know that which does not kill us makes us stronger...maybe this is killing me? Is it okay to feel angry...? Okay then....FUCK YOU CANCER!!!!
Wednesday, March 27, 2013
Countdown
Kait: Jake's doing great. The past treatment reminds me of his first treatment. Very little side effects, still playing and eating. Don't get me wrong, I've been loving having my sweetie pie laugh and be himself, but I always have the worry in the back of my mind. My mom came today which means that we will be in the hospital for 5 days straight. I dread telling him that we have to go...hearing him scream "no" as I put his EMLA (numbing) cream on his port. He will cry at least part of the way there and then scream again before the finger prick. He will need to be held down, like in the beginning, when they access his port. He has regressed a little in his bravery since the break from chemo. Including this treatment he has 10 left, so I assume he'll get used to it again. I wish he didn't have to get used to it! I don't know why, but I am more emotional now than I have ever been along this journey. I noticed today that his hair is getting even thinner and his eyebrows are almost gone. Soon people will know right off the bat that he has cancer and I won't get the chance to bypass the questions of passerby's once in a while. I contradict myself quite a bit on this subject and I assume it depends on my mood. Sometimes I sort of wish that I could just grocery shop in peace, without the stares. Other times I welcome the chance to talk about it. People ask "Did he break his leg?" I say "No, he had a bone tumor that had to be removed." I am not afraid to tell people about his diagnosis, but when it is with someone I've never met it turns into a long conversation about how we found it, what the surgery was like, and believe it or not, is he going to be okay? What are things not to ask the mom of a cancer patient for $1000, Alex? I know that people care and are curious, but it would be nice not to ask a mom if their son is going to live. The reality is that I know I have to be open and welcome questions so that people (like us) can see that cancer happens to kids and normal families that live in their town.
I know that Jake has a really decent shot at beating this. So what is my problem? Well, one of my problems is that I read things on Facebook too much. There are a few pages that I have "liked" that pop up on my feed and they are doing an amazing job of raising awareness. So today one of them is about a teenage boy diagnosed with the same thing as Jake. I think, "Oh, good this will be nice to read." I get to the end of the paragraph and the story concludes with funeral arrangements, or he got his wings, or he lost his fight. These stories are posted daily...and it hurts. I don't even know these people but it hurts to read it. That's why I always have it in the back of my mind that our son could succumb to the same evil. I pray and I hope and I wish constantly that this will not be the case. I remain positive and it's so hard to describe to someone who hasn't had a relative with cancer. But, believe me, it is just so depressing, all the time. From what I have found from other parent's experiences is that the fear and anxiety is always there, but once you get to the 5 year mark you can start to breath a little easier.
I had a break down last week because I felt inadequate compared to my husband. Trust me, he assures me otherwise. He has yet to blog about it, but he did an amazing job raising money and awareness for both a St. Baldrick's event and The Rally Foundation, and ran his first half marathon besides. Proud doesn't begin to describe how we all feel. I feel like a terrible person putting this out in the open, but I felt like I'm not doing enough and I let my insecurities overshadow the good Randy is doing. (Sorry Randy) This isn't about me, but as a Mom you want to fix everything for your children and I can't fix this for him. All I can do is walk to path with him and help the best I can. Sometimes that translates to me feeling helpless. I have found that all of my emotions are heightened, including the ones I'm told are ridiculous. I guess it was time for my biweekly emotional breakdown. ;)
Logistics and treatment-wise, this is what we have coming up: Jake will have two 5-day treatments in a row (admit on 3/28 and 4/11) and then two 2-day treatments in a row (admit on 4/25 and 5/9) provided there are no setbacks. He will then resume alternating between 5 and 2 day treatments until he has completed all 17. Let the countdown begin!
I had a break down last week because I felt inadequate compared to my husband. Trust me, he assures me otherwise. He has yet to blog about it, but he did an amazing job raising money and awareness for both a St. Baldrick's event and The Rally Foundation, and ran his first half marathon besides. Proud doesn't begin to describe how we all feel. I feel like a terrible person putting this out in the open, but I felt like I'm not doing enough and I let my insecurities overshadow the good Randy is doing. (Sorry Randy) This isn't about me, but as a Mom you want to fix everything for your children and I can't fix this for him. All I can do is walk to path with him and help the best I can. Sometimes that translates to me feeling helpless. I have found that all of my emotions are heightened, including the ones I'm told are ridiculous. I guess it was time for my biweekly emotional breakdown. ;)
Logistics and treatment-wise, this is what we have coming up: Jake will have two 5-day treatments in a row (admit on 3/28 and 4/11) and then two 2-day treatments in a row (admit on 4/25 and 5/9) provided there are no setbacks. He will then resume alternating between 5 and 2 day treatments until he has completed all 17. Let the countdown begin!
Here is Randy's speech from the Rally Foundation's pasta dinner:
Wednesday, March 13, 2013
Dear Jake
Kait:
Dear Jake,
You are amazing. You are awe-inspiring and wonderful and adorable and bewildering all at the same time. It has been 23 weeks and 2 days since your first x-ray, and since you have had 6 rounds of inpatient chemotherapy, 3 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 2 echocardiograms, 2 more x-rays, 3 blood transfusions, an MRI, and 2 CT/PET scans. You have been sedated 3 times and put under general anesthesia 3 times. Your port has been accessed 13 times. At the beginning I thought that having an MRI was a big deal and, thanks to cancer, an MRI is now a walk in the park. We keep wondering why you were chosen to have cancer. I say it's because your wonderfulness is going to change the world. You are so easy going and accepting. You went to sleep one day and woke up with a huge bandage on your leg, yet you didn't question it. You trusted us when we said the doctors fixed your boo-boo and then you asked to watch cartoons. Jake, you are so smart, sweet, lovable, and hilarious. Your laugh makes me burst with a laughter of my own. While you are perfect in my eyes, remember that no one is perfect by the definition of the word. Perfection is boring and you, my sweet pea, are always full of surprises. You can be quick to anger and can throw magical tantrums. I have to keep reminding myself that you are still only 3 because you are so mature and strong. You are someone to be looked up to and you have taught me so much.
"I'll love you forever, I'll like you for always. As long as I'm living, my baby you'll be." Robert Munsch
Mommy
Prelude to the letter above:
I wrote a letter to each of my boys before Aubrey was born last year and I plan to write one to them every year around their birthdays. Every word means even more to me now, and I want nothing more than to write these letters for years and years to come. Here is what I wrote to Jake last year:
Dear Jake (age 2 1/2),
You are my sweetie pie in every way! I love getting to see your personality grow as you have become a little person. You have a voice and something to say and you deserve to be heard. I am amazed at how smart you are, independent, courageous, hilarious, and sweet. You are going to grow up to be an incredible person and I am so proud to be your Mommy. I love you so much and I love spending time with you. You must always remember that I love you no matter what and always will. You are my littlest boy no matter how big you grow. I know your childhood will pass by in the blink of an eye for me, but I hope you (and I) will enjoy every minute that we spend together. It's hard to say that I can't wait to see who you become because the truth is that I want you to be my little boy for as long as possible. I love you so much.
Mommy
Dear Jake,
You are amazing. You are awe-inspiring and wonderful and adorable and bewildering all at the same time. It has been 23 weeks and 2 days since your first x-ray, and since you have had 6 rounds of inpatient chemotherapy, 3 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 2 echocardiograms, 2 more x-rays, 3 blood transfusions, an MRI, and 2 CT/PET scans. You have been sedated 3 times and put under general anesthesia 3 times. Your port has been accessed 13 times. At the beginning I thought that having an MRI was a big deal and, thanks to cancer, an MRI is now a walk in the park. We keep wondering why you were chosen to have cancer. I say it's because your wonderfulness is going to change the world. You are so easy going and accepting. You went to sleep one day and woke up with a huge bandage on your leg, yet you didn't question it. You trusted us when we said the doctors fixed your boo-boo and then you asked to watch cartoons. Jake, you are so smart, sweet, lovable, and hilarious. Your laugh makes me burst with a laughter of my own. While you are perfect in my eyes, remember that no one is perfect by the definition of the word. Perfection is boring and you, my sweet pea, are always full of surprises. You can be quick to anger and can throw magical tantrums. I have to keep reminding myself that you are still only 3 because you are so mature and strong. You are someone to be looked up to and you have taught me so much.
"I'll love you forever, I'll like you for always. As long as I'm living, my baby you'll be." Robert Munsch
Mommy
Prelude to the letter above:
I wrote a letter to each of my boys before Aubrey was born last year and I plan to write one to them every year around their birthdays. Every word means even more to me now, and I want nothing more than to write these letters for years and years to come. Here is what I wrote to Jake last year:
Dear Jake (age 2 1/2),
You are my sweetie pie in every way! I love getting to see your personality grow as you have become a little person. You have a voice and something to say and you deserve to be heard. I am amazed at how smart you are, independent, courageous, hilarious, and sweet. You are going to grow up to be an incredible person and I am so proud to be your Mommy. I love you so much and I love spending time with you. You must always remember that I love you no matter what and always will. You are my littlest boy no matter how big you grow. I know your childhood will pass by in the blink of an eye for me, but I hope you (and I) will enjoy every minute that we spend together. It's hard to say that I can't wait to see who you become because the truth is that I want you to be my little boy for as long as possible. I love you so much.
Mommy
Fun fact: Jake weighed 12lbs, 7 ounces and was 22.5 inches when he was born!
Open up your heart
Randy:
I come home smiling because Jake's appointment went well, and then I get on Facebook...one of the first things I get on here and read is of another child that has been treated in the same rooms as Jake at Egleston being told the unthinkable... "There is nothing more we can do" Silas is 4 years old...
This happens to real people...every single day....WE CAN HELP STOP THIS!!! Please do what you can to contribute....between 2 bowling balls and 4 leagues we have raised $3,500 for research....all together we as a team have raised $6,100 since November. I can't thank everyone enough for all of the support so far....
We're not done though... I type this with tears running down my cheeks for Silas' parents, and his family. He is Jake's age....and they have given him no more than 6 months. Imagine that for one second...just try to....imagine hearing those words. I can....it makes my heart literally hurt...it makes my throat swell....it makes my eyes burn. There are young children being taken...7 per day...every day. Today 46 families will be told the 4 words that destroyed our world, "Your baby has cancer". Let's stop giving cancer the last word. Let's work together and stop this from happening. Give $1...$5...something. No amount is too small. Give your time...your hair...your heart.
This Saturday I am dying my hair yellow and having it cut into a mohawk. Am I doing this for attention...you bet. I want people to ask me why I look like an idiot....I want to tell them about Silas....Jessie Rees....Anna Basso...Ashley Davis...Aiden...Matt Hobby...and the 2,800 children that will lose their fight this year.
"If it's miles we have to go, then it's miles we have to give" - Landon L Cooper
http://www.stbaldricks.org/participants/mypage/580686/2013
I come home smiling because Jake's appointment went well, and then I get on Facebook...one of the first things I get on here and read is of another child that has been treated in the same rooms as Jake at Egleston being told the unthinkable... "There is nothing more we can do" Silas is 4 years old...
This happens to real people...every single day....WE CAN HELP STOP THIS!!! Please do what you can to contribute....between 2 bowling balls and 4 leagues we have raised $3,500 for research....all together we as a team have raised $6,100 since November. I can't thank everyone enough for all of the support so far....
We're not done though... I type this with tears running down my cheeks for Silas' parents, and his family. He is Jake's age....and they have given him no more than 6 months. Imagine that for one second...just try to....imagine hearing those words. I can....it makes my heart literally hurt...it makes my throat swell....it makes my eyes burn. There are young children being taken...7 per day...every day. Today 46 families will be told the 4 words that destroyed our world, "Your baby has cancer". Let's stop giving cancer the last word. Let's work together and stop this from happening. Give $1...$5...something. No amount is too small. Give your time...your hair...your heart.
This Saturday I am dying my hair yellow and having it cut into a mohawk. Am I doing this for attention...you bet. I want people to ask me why I look like an idiot....I want to tell them about Silas....Jessie Rees....Anna Basso...Ashley Davis...Aiden...Matt Hobby...and the 2,800 children that will lose their fight this year.
"If it's miles we have to go, then it's miles we have to give" - Landon L Cooper
http://www.stbaldricks.org/participants/mypage/580686/2013
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