Childhood Cancer Awareness Month is ending today...for this year. There are so many that will be aware all year round and I am so grateful for that. I know I will be aware that children get cancer for the rest of my life.
I don't have millions of dollars to fund childhood cancer research, but I can do fundraisers to help! I can't make everyone aware of Childhood Cancer, but I can make some people aware!
September is over but the fight of many children around the world is not. I will continue to push for awareness and funding for childhood cancer research.
Thank you so much to everyone who has supported us in this journey! Thank you for reading these blog entries, thank you for helping us raise nearly $3000 for CURE and nearly $1000 for Alex's Lemonade Stand this month! Thank you for being aware, and for supporting those children in your life who face cancer.
God bless you!
Monday, September 30, 2013
Sunday, September 29, 2013
Day 29 - Quiet Heroes
Yesterday I attended "A tribute to our Quiet Heroes" Luncheon and fundraiser in Atlanta. It was a luncheon honoring some of us cancer moms and also an opportunity for others to come and bid on items in the silent auction and make donations to CURE Childhood Cancer.
It was so nice! But very overwhelming. There were so many people there! Mostly women. Those of us who had children with cancer were asked to raise our hands during the event, it was astounding to see so many other mothers whose children also had or have cancer. Some are still fighting, some have fought and won, some have fought and lost. Even though I know the numbers, to see so many cancer moms, representing so many children with cancer, was so very very sad.
I don't know the final number but I know thousands of dollars were raised yesterday. I am so glad so many people are stepping up to help.
It has been difficult to continue our fundraising efforts and awareness raising efforts this month, Childhood Cancer Awareness month, but we can't stop. Silas is not here any more. No amount of fundraising or awareness raising of this terrible disease can do anything for him, but he's not the only one. Tomorrow 46 more children will be diagnosed, 7 more will die. We can't stop now, we have to keep going for them.
It was so nice! But very overwhelming. There were so many people there! Mostly women. Those of us who had children with cancer were asked to raise our hands during the event, it was astounding to see so many other mothers whose children also had or have cancer. Some are still fighting, some have fought and won, some have fought and lost. Even though I know the numbers, to see so many cancer moms, representing so many children with cancer, was so very very sad.
I don't know the final number but I know thousands of dollars were raised yesterday. I am so glad so many people are stepping up to help.
It has been difficult to continue our fundraising efforts and awareness raising efforts this month, Childhood Cancer Awareness month, but we can't stop. Silas is not here any more. No amount of fundraising or awareness raising of this terrible disease can do anything for him, but he's not the only one. Tomorrow 46 more children will be diagnosed, 7 more will die. We can't stop now, we have to keep going for them.
Thursday, September 26, 2013
Day 26 - Gold
Childhood Cancer Awareness month is nearly over. The gold bows will start coming down. People will start thinking about Breast Cancer Awareness, Fall festivals, Thanksgiving and Christmas.
For us though, Childhood Cancer and its color, gold, will continue to be a big part of our lives. Silas is no longer with us, but it was his favorite color. Not just because of Childhood Cancer, but also because of Heaven, which is where Silas is.
In Revelation 21:21 the Bible tells us of the streets of gold, pure gold. Silas said this was one of his favorite things about Heaven.
We have gold bows all around our house, on our car and minivan, and it will probably always be there. Reminding us not only of the children fighting cancer, but more importantly of our real home, in Heaven.
Heaven is a real place, it is more real even than where we are now. I imagine when we go there, this life we are living now will seem only as real as a fading dream.
I imagine when I arrive in Heaven, Jesus will be there to greet me with many people standing around, a little ways back. He will embrace me and we will have a special time together. After that, the people will come close to greet me and welcome me home. Silas will be there, my grandparents will be there, everyone I have ever known who has gone on before me will be there. Oh how I long for that day!
This life here is important too though. Everything I go through here will be preparing me for there. Every life I come into contact here matters in eternity. I don't understand it all, but I believe it. I believe God has a purpose for my life and is even now working out His plan.
For us though, Childhood Cancer and its color, gold, will continue to be a big part of our lives. Silas is no longer with us, but it was his favorite color. Not just because of Childhood Cancer, but also because of Heaven, which is where Silas is.
In Revelation 21:21 the Bible tells us of the streets of gold, pure gold. Silas said this was one of his favorite things about Heaven.
We have gold bows all around our house, on our car and minivan, and it will probably always be there. Reminding us not only of the children fighting cancer, but more importantly of our real home, in Heaven.
Heaven is a real place, it is more real even than where we are now. I imagine when we go there, this life we are living now will seem only as real as a fading dream.
I imagine when I arrive in Heaven, Jesus will be there to greet me with many people standing around, a little ways back. He will embrace me and we will have a special time together. After that, the people will come close to greet me and welcome me home. Silas will be there, my grandparents will be there, everyone I have ever known who has gone on before me will be there. Oh how I long for that day!
This life here is important too though. Everything I go through here will be preparing me for there. Every life I come into contact here matters in eternity. I don't understand it all, but I believe it. I believe God has a purpose for my life and is even now working out His plan.
Wednesday, September 25, 2013
Day 25 - 4 months
It has been 4 months today since my son took his last breath.
Since he died on May 25th, approximately 840 other children have also died from cancer, and that's just in the USA!
That's just too many.
Since he died on May 25th, approximately 840 other children have also died from cancer, and that's just in the USA!
That's just too many.
Tuesday, September 24, 2013
Day 24 - Happy Birthday Daddy!
Many families who face childhood cancer are single parent families, divorced families, or families where they children are being raised by someone other than their parents. This throws different kinds of difficulties into the equation. These families need extra support and encouragement during this difficult time.
Archie and I have been very blessed with a wonderful marriage. It takes work and commitment, but most importantly it takes putting the Lord first in our lives. The Lord having place above each other and our children.
Archie is a loving husband and father. I really cares about his family and about his role as husband and father. He loves the Lord and is dedicated to seeking His will for our family. He took such good care of Silas, he did whatever he had to do to make sure that things were taken care of while Silas was sick. So often it was Silas and I making the trips back and forth to the hospital and Archie staying home and looking after his mom and Michael, Gideon, and Jason.
He continued working for the first 11 months of Silas' treatment but came home and stayed home in January and did not go back to work until well after Silas passed away. He would have been willing to lose his job to be home with his family, but there was no need to worry about that, he works for some fantastic people who supported him and us in taking the time we needed to be home with Silas. I am so glad that Archie was able to be home where he needed to be, especially during those last few weeks before Silas passed away.
Archie held Silas in his arms the last time he was conscious. It was Friday night and I had been holding Silas in the rocking chair. I needed a break and Silas indicated he wanted to lay on the bed with Daddy. We moved him to the bed, he laid in the crook of Archie's arm and settled down. That was the last time he was responsive. I moved him to the other side of the bed to clean him up a couple of hours later but he was no longer responsive, he died the next afternoon.
I am so blessed to have Archie as a husband, I cannot imagine life without him! He is my best friend. The boys are so blessed to have him as a Daddy too! He really cares about raising them to be godly men and takes time to be with them.
I praise the Lord for Archie!
Happy Birthday Archie!
Archie and I have been very blessed with a wonderful marriage. It takes work and commitment, but most importantly it takes putting the Lord first in our lives. The Lord having place above each other and our children.
Archie is a loving husband and father. I really cares about his family and about his role as husband and father. He loves the Lord and is dedicated to seeking His will for our family. He took such good care of Silas, he did whatever he had to do to make sure that things were taken care of while Silas was sick. So often it was Silas and I making the trips back and forth to the hospital and Archie staying home and looking after his mom and Michael, Gideon, and Jason.
He continued working for the first 11 months of Silas' treatment but came home and stayed home in January and did not go back to work until well after Silas passed away. He would have been willing to lose his job to be home with his family, but there was no need to worry about that, he works for some fantastic people who supported him and us in taking the time we needed to be home with Silas. I am so glad that Archie was able to be home where he needed to be, especially during those last few weeks before Silas passed away.
Archie held Silas in his arms the last time he was conscious. It was Friday night and I had been holding Silas in the rocking chair. I needed a break and Silas indicated he wanted to lay on the bed with Daddy. We moved him to the bed, he laid in the crook of Archie's arm and settled down. That was the last time he was responsive. I moved him to the other side of the bed to clean him up a couple of hours later but he was no longer responsive, he died the next afternoon.
I am so blessed to have Archie as a husband, I cannot imagine life without him! He is my best friend. The boys are so blessed to have him as a Daddy too! He really cares about raising them to be godly men and takes time to be with them.
I praise the Lord for Archie!
Happy Birthday Archie!
Monday, September 23, 2013
Off topic - Gideon's eyes
My posts this month have been about Childhood Cancer, but today I want to share sometime else.
On Friday we took Gideon for his eye Doctor appointment. He has been going every 3-4 months for the past 4 years, having vision therapy for the last 4 years, and wearing glasses for the past 6 years!
When Gideon was 4 we noticed that he turned his head to the side to look at things and that one eye drifted. We took him to the eye Doctor and he was given glasses. It took no time at all for him to get used to them because he could see and he loved that!
When we moved to Georgia in 2009, we knew he probably needed new glasses since he was not liking the pair he had anymore. We took him to a local Optometrist who referred him to a Specialist in Savannah. It was there that Gideon was diagnosed with Amblyopia, commonly referred to as "lazy eye". At this point, Gideon was 6 years old and it is commonly assumed that the problem can no longer be corrected after 6 years old. However, the Specialist did not feel this was true and so we began "patching" to try and correct Gideon's vision.
We used patches that covered his "good" eye like a bandaid, to force the "lazy" eye to work harder and correct itself. After a while we also used eye drops in his "good" eye that made his vision blurry in that eye, which accomplished the same thing as patching, but worked for longer periods of time. With the actual patches we often had the problem of them coming off before they were supposed to. For instance, if he was supposed to wear a patch for 3 hours one day, it might start peeling off if he were running around outside getting sweaty. Of course we could just put another one on, but that was expensive.
His vision slowly improved over the years, he changed prescriptions several times and as of June this year his vision had improved from the original 20/100 to 20/20! Well, almost 20/20, his left eye is still slightly dominant but its close enough.
At our visit to the Specialist on Friday Gideon got great news, his vision is now stable without therapy and he doesn't have to go back for a check up for a whole year!!! He was very glad to hear this and so was I. He will likely always need to wear glasses (the 20/20 is with glasses on), but that's OK, lots of people wear glasses!
On Friday we took Gideon for his eye Doctor appointment. He has been going every 3-4 months for the past 4 years, having vision therapy for the last 4 years, and wearing glasses for the past 6 years!
When Gideon was 4 we noticed that he turned his head to the side to look at things and that one eye drifted. We took him to the eye Doctor and he was given glasses. It took no time at all for him to get used to them because he could see and he loved that!
When we moved to Georgia in 2009, we knew he probably needed new glasses since he was not liking the pair he had anymore. We took him to a local Optometrist who referred him to a Specialist in Savannah. It was there that Gideon was diagnosed with Amblyopia, commonly referred to as "lazy eye". At this point, Gideon was 6 years old and it is commonly assumed that the problem can no longer be corrected after 6 years old. However, the Specialist did not feel this was true and so we began "patching" to try and correct Gideon's vision.
We used patches that covered his "good" eye like a bandaid, to force the "lazy" eye to work harder and correct itself. After a while we also used eye drops in his "good" eye that made his vision blurry in that eye, which accomplished the same thing as patching, but worked for longer periods of time. With the actual patches we often had the problem of them coming off before they were supposed to. For instance, if he was supposed to wear a patch for 3 hours one day, it might start peeling off if he were running around outside getting sweaty. Of course we could just put another one on, but that was expensive.
His vision slowly improved over the years, he changed prescriptions several times and as of June this year his vision had improved from the original 20/100 to 20/20! Well, almost 20/20, his left eye is still slightly dominant but its close enough.
At our visit to the Specialist on Friday Gideon got great news, his vision is now stable without therapy and he doesn't have to go back for a check up for a whole year!!! He was very glad to hear this and so was I. He will likely always need to wear glasses (the 20/20 is with glasses on), but that's OK, lots of people wear glasses!
Day 23 - Chili's
Today Chili's restaurant is donating 100% of their net profit from the day to St. Jude Children's Research Hospital! We found out about this last year. They do it every year in September!
Last year Silas had an appointment in Atlanta to discuss a liver transplant with the specialists there. It was Archie's birthday and we ate at Chili's for lunch. The staff there was really great and gave Silas a free t-shirt and gave us a discount on our meal. I appreciate so much that a big chain like this would support St. Jude and all that they do for kids with cancer as well as other illnesses.
So, if you have a Chili's anywhere near you (the one we are going to tonight is 45 minutes away), and you feel like eating out, make it a Chili's night! You get a meal and you get to donate to a great cause!
Last year Silas had an appointment in Atlanta to discuss a liver transplant with the specialists there. It was Archie's birthday and we ate at Chili's for lunch. The staff there was really great and gave Silas a free t-shirt and gave us a discount on our meal. I appreciate so much that a big chain like this would support St. Jude and all that they do for kids with cancer as well as other illnesses.
So, if you have a Chili's anywhere near you (the one we are going to tonight is 45 minutes away), and you feel like eating out, make it a Chili's night! You get a meal and you get to donate to a great cause!
Thursday, September 19, 2013
Day 19 - some good things
Romans 8:28-29
"And we know that all things work together for good to those who love God, to those who are the called according to His purpose. For whom He foreknew, He also predestined to be conformed to the image of His Son, that He might be the firstborn among many brethren."
There are things in this world that are just bad, there is nothing good about them, cancer is one of them. I cannot say anything good about Silas' cancer. It killed him.
However, God can, and does, bring good about despite the bad things that happen in our lives. He does work things together for good.
Today I want to share some of the good things that came about through our experience with cancer, that might not have happened otherwise.
1. We met some amazing people! Doctors, nurses, and many other people who will be part of our lives from now on. I can't imagine any other way of having met some of these amazing people and I am so thankful that the Lord brought them into our lives.
2. We were given the opportunity to share the Love of the Lord with so many people! Through hospital stays, through sharing Silas' story on facebook and through Caring Bridge, we have been given many opportunities to share the Lord with others, and so many have accepted the Lord!
3. As I said in #2, many have accepted the Lord through Silas' story and testimony, and many people have also come back to the Lord. So many people have told me that they began to pray again after years of not praying.
4. We have come closer together as a family. We spend more time together and are more purposeful about spending time together. Enjoying each other and making the most of the time we have together.
5. We take advantage of the opportunities that present themselves more now, rather than saying "oh, not now, maybe one day". Rather than saying "maybe one day" we say "why not today?"
6. We became more involved in our community, we got to know our community better.
7. We gained a much clearer Heavenly perspective. I think I have always looked forward to Heaven one day, but it has become so much more real, and so much more glorious. Heaven is home, my real home. Silas used to say that Heaven was his real home. Near the end of his life he said "OK, I'm ready to go home now". Heaven is my real home too, and I look forward to the day that the Lord calls me there.
"And we know that all things work together for good to those who love God, to those who are the called according to His purpose. For whom He foreknew, He also predestined to be conformed to the image of His Son, that He might be the firstborn among many brethren."
There are things in this world that are just bad, there is nothing good about them, cancer is one of them. I cannot say anything good about Silas' cancer. It killed him.
However, God can, and does, bring good about despite the bad things that happen in our lives. He does work things together for good.
Today I want to share some of the good things that came about through our experience with cancer, that might not have happened otherwise.
1. We met some amazing people! Doctors, nurses, and many other people who will be part of our lives from now on. I can't imagine any other way of having met some of these amazing people and I am so thankful that the Lord brought them into our lives.
2. We were given the opportunity to share the Love of the Lord with so many people! Through hospital stays, through sharing Silas' story on facebook and through Caring Bridge, we have been given many opportunities to share the Lord with others, and so many have accepted the Lord!
3. As I said in #2, many have accepted the Lord through Silas' story and testimony, and many people have also come back to the Lord. So many people have told me that they began to pray again after years of not praying.
4. We have come closer together as a family. We spend more time together and are more purposeful about spending time together. Enjoying each other and making the most of the time we have together.
5. We take advantage of the opportunities that present themselves more now, rather than saying "oh, not now, maybe one day". Rather than saying "maybe one day" we say "why not today?"
6. We became more involved in our community, we got to know our community better.
7. We gained a much clearer Heavenly perspective. I think I have always looked forward to Heaven one day, but it has become so much more real, and so much more glorious. Heaven is home, my real home. Silas used to say that Heaven was his real home. Near the end of his life he said "OK, I'm ready to go home now". Heaven is my real home too, and I look forward to the day that the Lord calls me there.
Wednesday, September 18, 2013
Day 18 - Siblings hurt too
Silas was the youngest of 4 brothers. His cancer did not only affect him, but it affected our whole family, including his 3 big brothers.
When Silas' diagnosis was confirmed on February 10th, 2012, Gideon was celebrating his 9th birthday. We celebrated in the hospital. We had been planning a surprise birthday party. Friends and family stepped up and helped give him a surprise party anyway, but Silas and I were not able to attend, we were in the hospital. Silas was also too sick to attend Michael's birthday party with friends.
We tried our best to make sure the older boys still got to enjoy outside activities but there was still so much we just could not do while we were caring for Silas. They missed out on a lot or normal regular activities. I am so thankful for those that remembered the older boys while Silas was sick. People who sent cards to them, took them to see movies or go to the park.
They missed out on being with their brother and parents too. We were separated for many days and nights during treatment.
Then there is the part about them worrying, they worried about Silas, they worried what would happen next, whether he would come home from the hospital.
At the end, it was extremely emotional for them. Michael and Jason both slept in our room along with Silas at night, fearing he would die when they weren't close by. Michael wouldn't leave the house, afraid that Silas would be gone when he came back. Gideon cried a lot before Silas passed away, he was so upset about Silas being in pain.
Childhood cancer hurts siblings too. We have had help from those around us to take care of Silas' older brothers and their needs. We have tried to give them the attention and support that they need. They will get through this, just as we will.
When Silas' diagnosis was confirmed on February 10th, 2012, Gideon was celebrating his 9th birthday. We celebrated in the hospital. We had been planning a surprise birthday party. Friends and family stepped up and helped give him a surprise party anyway, but Silas and I were not able to attend, we were in the hospital. Silas was also too sick to attend Michael's birthday party with friends.
We tried our best to make sure the older boys still got to enjoy outside activities but there was still so much we just could not do while we were caring for Silas. They missed out on a lot or normal regular activities. I am so thankful for those that remembered the older boys while Silas was sick. People who sent cards to them, took them to see movies or go to the park.
They missed out on being with their brother and parents too. We were separated for many days and nights during treatment.
Then there is the part about them worrying, they worried about Silas, they worried what would happen next, whether he would come home from the hospital.
At the end, it was extremely emotional for them. Michael and Jason both slept in our room along with Silas at night, fearing he would die when they weren't close by. Michael wouldn't leave the house, afraid that Silas would be gone when he came back. Gideon cried a lot before Silas passed away, he was so upset about Silas being in pain.
Childhood cancer hurts siblings too. We have had help from those around us to take care of Silas' older brothers and their needs. We have tried to give them the attention and support that they need. They will get through this, just as we will.
Tuesday, September 17, 2013
Day 17 - Relapse
"Relapse" is worse that the initial news that "your child has cancer".
When you first hear that your little boy or little girl has cancer, you are often ignorant of what that means. I had never heard the word "Hepatoblastoma" before. I had no idea that children could get liver cancer. I didn't know much about chemotherapy other than vomiting and hair loss. I didn't know how many different kinds of chemo there are, or the different methods of administration, or the other drugs that would be used as well. I did know the statistics on cure rates, I didn't know about long term side effects of chemo. I didn't know how sensitive my son would be to dressings, I didn't know what a central line was. I didn't know a lot.
After going through treatment one time, then you know. Relapse sends chills down your spine and puts fear in your heart. Now you know the horrors of cancer treatment and relapse means going through it all over again, or worse, as in Silas' case, going into the unknown. Sometimes relapse has no specific treatment plan. Sometimes relapse means shooting in the dark hoping something will work. Sometimes relapse is a death sentence.
Relapse is a word that no cancer parent ever wants to hear. Ever. For some, like Silas, relapse happens before you even get the "all clear" to begin with. After Silas' treatment finished in August we went to have scans and blood work to be sure the cancer was really gone. The tests the last week of August were inconclusive so we waited until September 17th, one year ago today, and repeated the tests. Relapse. It was back, it was growing, Silas was not cancer free.
For some, relapse comes months or even years later! Just when they think everything is going to be OK.
Many live the rest of their lives cancer free, never relapsing, but that fear is never quite gone. That little thought hiding in the back of their minds "what if it comes back?".
When you first hear that your little boy or little girl has cancer, you are often ignorant of what that means. I had never heard the word "Hepatoblastoma" before. I had no idea that children could get liver cancer. I didn't know much about chemotherapy other than vomiting and hair loss. I didn't know how many different kinds of chemo there are, or the different methods of administration, or the other drugs that would be used as well. I did know the statistics on cure rates, I didn't know about long term side effects of chemo. I didn't know how sensitive my son would be to dressings, I didn't know what a central line was. I didn't know a lot.
After going through treatment one time, then you know. Relapse sends chills down your spine and puts fear in your heart. Now you know the horrors of cancer treatment and relapse means going through it all over again, or worse, as in Silas' case, going into the unknown. Sometimes relapse has no specific treatment plan. Sometimes relapse means shooting in the dark hoping something will work. Sometimes relapse is a death sentence.
Relapse is a word that no cancer parent ever wants to hear. Ever. For some, like Silas, relapse happens before you even get the "all clear" to begin with. After Silas' treatment finished in August we went to have scans and blood work to be sure the cancer was really gone. The tests the last week of August were inconclusive so we waited until September 17th, one year ago today, and repeated the tests. Relapse. It was back, it was growing, Silas was not cancer free.
For some, relapse comes months or even years later! Just when they think everything is going to be OK.
Many live the rest of their lives cancer free, never relapsing, but that fear is never quite gone. That little thought hiding in the back of their minds "what if it comes back?".
Monday, September 16, 2013
Day 16 - Thank you!
I am so grateful that so many people have contributed to Silas' fundraiser page on www.curechildhoodcancer.org ! Thank you all so much!!! I hope and pray that their September fundraising event is a smashing success!
If you haven't seen Silas' page on their fundraiser, here it is!
Sunday, September 15, 2013
Day 15 - Time in the Hospital
OK, I missed a day, moving on...
I am so thankful that the Longest stay Silas had in the hospital was 10 days (if I remember correctly). Many children suffering from cancer have to spend MONTHS at a time in the hospital! Some children are in the hospital for their entire course of treatment!
Something that you can to to make this time a little easier is to donate new, unused toys, new or used video games or dvd's, crafting supplies, board games, etc. to your local children's hospital.
I am so thankful that the Longest stay Silas had in the hospital was 10 days (if I remember correctly). Many children suffering from cancer have to spend MONTHS at a time in the hospital! Some children are in the hospital for their entire course of treatment!
Something that you can to to make this time a little easier is to donate new, unused toys, new or used video games or dvd's, crafting supplies, board games, etc. to your local children's hospital.
Friday, September 13, 2013
Day 13 - A day
Today is National Childhood Cancer Awareness day.
One day isn't enough though, one month isn't enough, we need to be aware of childhood cancer every day.
One day isn't enough though, one month isn't enough, we need to be aware of childhood cancer every day.
Thursday, September 12, 2013
Day 12 - Cancer moms don't make good friends
I read something recently that said "Cancer Moms don't make very good friends". You know, its true. We don't make very good friends. We forget birthdays and holidays. We forget to send thank you notes. We forget to call you back. Our eyes glaze over when you talk about...well, anything.
Our minds are so full of medicine schedules, doctors appointments, test results, packing for the next hospital stay, repacking our bag as soon as we get home because we don't know when we will have to rush back to the hospital, trying to make sure we pick up the latest medicine from the pharmacy, making sure there is gas in the car, rescheduling - lots of things, playing phone tag with the doctor, dressing wounds and line sites, hooking up feeding tubes, learning how to flush central lines and ports, using NG tubes and GI tubes, making sure we have child care for our other children, making sure we don't run out of any prescriptions, checking our child's temperature - sometimes several times a day, trying to remember the last time we had a shower....the list goes on.
We don't make very good friends when our child has cancer, but we sure need good friends!
We need friends who will take care of our other children at a moment's notice, friends who will not get upset if we forget your birthday or anniversary, or forget to call you back. We need friends who will bring us a home cooked meal when we are in the hospital for the 12th day in a row. We need friends who will pray for us every single day. We need friends who will call and check on us and ask if there is anything we need, even if we have told you 100 times before that we are fine. We need friends who will offer to do something fun with our other children just so we can have a break while we are home from the hospital. We need friends who will write us notes of encouragement from time to time. We need friends who will offer to come over for an hour so we can bathe for the first time in who knows how long, or even take a much needed nap. We need friends who will offer to do specific things, like come over to make a dent in our mountain of laundry, or sink overflowing with dishes, or to mop the floors or sanitize the house. We need friends who will bring food, cleaning supplies, paper plates and cups, and toilet paper so we don't have to run out and get it ourselves when our time at home is so precious.
I am so grateful to have had people do many of these things for me. I wish I could have been a better friend, but you have been a good friend to me in my hardest time, and I hope and pray that when you face hard times I will be there to do these things for you. That when you can't be a good friend, I can step up and be a good friend to you.
Proverbs 27:17 "As iron sharpens iron, So a man sharpens the countenance of his friend."
Our minds are so full of medicine schedules, doctors appointments, test results, packing for the next hospital stay, repacking our bag as soon as we get home because we don't know when we will have to rush back to the hospital, trying to make sure we pick up the latest medicine from the pharmacy, making sure there is gas in the car, rescheduling - lots of things, playing phone tag with the doctor, dressing wounds and line sites, hooking up feeding tubes, learning how to flush central lines and ports, using NG tubes and GI tubes, making sure we have child care for our other children, making sure we don't run out of any prescriptions, checking our child's temperature - sometimes several times a day, trying to remember the last time we had a shower....the list goes on.
We don't make very good friends when our child has cancer, but we sure need good friends!
We need friends who will take care of our other children at a moment's notice, friends who will not get upset if we forget your birthday or anniversary, or forget to call you back. We need friends who will bring us a home cooked meal when we are in the hospital for the 12th day in a row. We need friends who will pray for us every single day. We need friends who will call and check on us and ask if there is anything we need, even if we have told you 100 times before that we are fine. We need friends who will offer to do something fun with our other children just so we can have a break while we are home from the hospital. We need friends who will write us notes of encouragement from time to time. We need friends who will offer to come over for an hour so we can bathe for the first time in who knows how long, or even take a much needed nap. We need friends who will offer to do specific things, like come over to make a dent in our mountain of laundry, or sink overflowing with dishes, or to mop the floors or sanitize the house. We need friends who will bring food, cleaning supplies, paper plates and cups, and toilet paper so we don't have to run out and get it ourselves when our time at home is so precious.
I am so grateful to have had people do many of these things for me. I wish I could have been a better friend, but you have been a good friend to me in my hardest time, and I hope and pray that when you face hard times I will be there to do these things for you. That when you can't be a good friend, I can step up and be a good friend to you.
Proverbs 27:17 "As iron sharpens iron, So a man sharpens the countenance of his friend."
Wednesday, September 11, 2013
Day 11 - I hear his voice in my head
I still hear his voice in my head. I hear him saying "Momma", I hear him trying to explain something to his brother Jason, I hear him yelling for Michael or Gideon to come do something for him, I hear him telling his daddy what he wants to eat.
I am afraid I will forget his little voice. I don't remember what the other boys sounded like when they were little, not really. I am afraid I will no longer hear him say "I love you Momma" in my head.
Three months have passed already, nearly 4. The tears don't flow as often now but there are always near the surface ready for just the right trigger...the green nail polish that he painted the bathroom with is still there, his little shoes - wondering what to do with them now, getting ready to spend a weekend at Wild Adventures - a trip he was so looking forward to this year, so many things that can be divided by 4 or 6, can't be divided easily by 5.
His voice may fade over the years, I may have to rely on videos to hear it. I may forget his birth marks and scars. I may forget a lot, but I will never forget how much I loved him. Should I live to be 110 not a day will pass that I will not miss him and not a day will go by that I will not look forward to being with him again in Heaven.
I am afraid I will forget his little voice. I don't remember what the other boys sounded like when they were little, not really. I am afraid I will no longer hear him say "I love you Momma" in my head.
Three months have passed already, nearly 4. The tears don't flow as often now but there are always near the surface ready for just the right trigger...the green nail polish that he painted the bathroom with is still there, his little shoes - wondering what to do with them now, getting ready to spend a weekend at Wild Adventures - a trip he was so looking forward to this year, so many things that can be divided by 4 or 6, can't be divided easily by 5.
His voice may fade over the years, I may have to rely on videos to hear it. I may forget his birth marks and scars. I may forget a lot, but I will never forget how much I loved him. Should I live to be 110 not a day will pass that I will not miss him and not a day will go by that I will not look forward to being with him again in Heaven.
Tuesday, September 10, 2013
Day 10 - for a CURE
Today Silas is featured on CURE Childhood Cancer's website. Each day during the month of September they are sharing 2 or 3 stories from children who have fought, or are fighting cancer. Their goal is to raise awareness and funds through these stories.
I would ask that you would prayerfully consider making a donation to CURE in memory of Silas. It does not have to be a large donation, anything will help. I keep saying it but I will say it again, if we all do a little, a lot can be accomplished!
Thank you so much for your continued support, God bless you all!
https://www.firstgiving.com/fundraiser/SilasEdenfield/2013-cures-kids-conquer-cancer-one-day-at-a-time
www.curechildhoodcancer.org
I would ask that you would prayerfully consider making a donation to CURE in memory of Silas. It does not have to be a large donation, anything will help. I keep saying it but I will say it again, if we all do a little, a lot can be accomplished!
Thank you so much for your continued support, God bless you all!
https://www.firstgiving.com/fundraiser/SilasEdenfield/2013-cures-kids-conquer-cancer-one-day-at-a-time
www.curechildhoodcancer.org
Monday, September 9, 2013
Day 9 - Long term side effects of cancer treatment
"But even for kids who survive, the battle is not over. Because of the treatments they had as kids, by the time they’re 45, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions." ~St. Baldricks Foundation.
In addition to finding cures for childhood cancers, we need to focus on less toxic treatments and cures!
When Silas was being treated we were given long lists of possible late term affects of the treatments. He probably would have never been able to have children, he could have lost his hearing, his teeth probably would have been very bad the rest of his life, he could have developed a secondary cancer caused by the chemotherapy, and the list goes on.
To me this is unacceptable. We must fund research so that less toxic treatments with more positive outcomes can be found. There are so many breakthroughs around the corner in the world of childhood cancer research, but there needs to be more funding so they can be discovered faster so that fewer children have to die from the cancer or be permanently injured by the treatment.
Many children fighting cancer today do not have 5 or 10 years, or even 1 year to wait for a breakthrough in childhood cancer treatment.
In addition to finding cures for childhood cancers, we need to focus on less toxic treatments and cures!
When Silas was being treated we were given long lists of possible late term affects of the treatments. He probably would have never been able to have children, he could have lost his hearing, his teeth probably would have been very bad the rest of his life, he could have developed a secondary cancer caused by the chemotherapy, and the list goes on.
To me this is unacceptable. We must fund research so that less toxic treatments with more positive outcomes can be found. There are so many breakthroughs around the corner in the world of childhood cancer research, but there needs to be more funding so they can be discovered faster so that fewer children have to die from the cancer or be permanently injured by the treatment.
Many children fighting cancer today do not have 5 or 10 years, or even 1 year to wait for a breakthrough in childhood cancer treatment.
Sunday, September 8, 2013
Day 8 - Cancer, a worldwide problem
Worldwide a child is diagnosed with cancer every 3 minutes. This is NOT just a US problem! Its everywhere.
When Silas was first diagnosed one of the first things I thought of was how thankful I was that we were in a part of the world where he could be diagnosed and receive treatment. There are so many places in the world today where children die from cancer having never been diagnosed or treated for it.
Please take a moment and pray for the families around the world who lose their children to cancer and never know why.
Saturday, September 7, 2013
Day 7 - Camp Hope
Yesterday and today the boys attended Camp Hope, a grief camp for children who have lost a loved one. I think it was a lot of fun for them. Michael and Gideon particularly enjoyed the jet ski! Jason enjoyed the balloons the most (balloon animals and such).
Archie and I spent the day out and about and had lunch together. It was a really nice date.
When we returned to pick up the boys everyone told us how much they enjoyed having them and how smart they were :)
We completed 25 miles this week towards our 100 combined mile goal for the Alex's Lemonade Stand Foundation Million Mile Run. Just 75 miles left to go! If you would like to learn more about this, and how you can get involved....
http://www.alexslemonade.org/mypage/115552
Archie and I spent the day out and about and had lunch together. It was a really nice date.
When we returned to pick up the boys everyone told us how much they enjoyed having them and how smart they were :)
We completed 25 miles this week towards our 100 combined mile goal for the Alex's Lemonade Stand Foundation Million Mile Run. Just 75 miles left to go! If you would like to learn more about this, and how you can get involved....
http://www.alexslemonade.org/mypage/115552
Friday, September 6, 2013
Day 6 - a video of Silas
Today I will just share a video...This video was made in September last year when Silas had a new central line placed. This is just another thing that kids with cancer have to endure, IV's, ports, central lines...Silas was amazing and handled it so well!
Here is a link to the video...
Here is a link to the video...
I miss him so much.
Thursday, September 5, 2013
Day 5 - What you can do
Everyone can do something.
Not everyone can paint their nails gold, not everyone has a door or a car to place a gold bow on, not everyone can donate money, not everyone can wear a gold ribbon, not everyone can bring a meal to a family fighting cancer, or run and errand for a family fighting cancer, BUT everyone CAN pray!
Everyone can do something!
Everyone can pray for those families fighting cancer with their children, everyone can pray for the Lord to provide for their needs and to heal their precious children. Everyone can do this!
Everyone can do something.
Put a jar next to your washer and dryer and put all of the money that falls out of pockets into it, once its full, donate it to childhood cancer research!
Put a gold ribbon up on your front door or on a tree in your yard.
Paint your toe nails gold, or your fingernails, or one fingernail!
Put a gold ribbon bumper sticker or magnet on your car.
Tell a friend that kids get cancer too.
Share a link or links on your facebook or twitter to stories of childhood cancer kids.
Share a link or links to organizations that support funding for childhood cancer research.
Order some brochures from CURE Childhood cancer and pass them out to friends and family.
If you get some unexpected cash, take a portion of it and donate to childhood cancer research.
Shave your head at a St. Baldrick's event!
Host a car wash, bake sale, or other fundraiser in September to raise funds and awareness for childhood cancer.
Wear a t-shirt that supports childhood cancer awareness.
Everyone can do something, there are so many things you can do!
Not everyone can paint their nails gold, not everyone has a door or a car to place a gold bow on, not everyone can donate money, not everyone can wear a gold ribbon, not everyone can bring a meal to a family fighting cancer, or run and errand for a family fighting cancer, BUT everyone CAN pray!
Everyone can do something!
Everyone can pray for those families fighting cancer with their children, everyone can pray for the Lord to provide for their needs and to heal their precious children. Everyone can do this!
Everyone can do something.
Put a jar next to your washer and dryer and put all of the money that falls out of pockets into it, once its full, donate it to childhood cancer research!
Put a gold ribbon up on your front door or on a tree in your yard.
Paint your toe nails gold, or your fingernails, or one fingernail!
Put a gold ribbon bumper sticker or magnet on your car.
Tell a friend that kids get cancer too.
Share a link or links on your facebook or twitter to stories of childhood cancer kids.
Share a link or links to organizations that support funding for childhood cancer research.
Order some brochures from CURE Childhood cancer and pass them out to friends and family.
If you get some unexpected cash, take a portion of it and donate to childhood cancer research.
Shave your head at a St. Baldrick's event!
Host a car wash, bake sale, or other fundraiser in September to raise funds and awareness for childhood cancer.
Wear a t-shirt that supports childhood cancer awareness.
Everyone can do something, there are so many things you can do!
Wednesday, September 4, 2013
Day 4 - Which organizations to support
People ask me a lot which childhood cancer organizations are good to support. Here is a list of some good ones! There are probably more out there, but these are the organizations I know to be good.
www.curechildhoodcancer.org
www.curesearch.org
www.stbaldricks.org
www.thetruth365.org
www.alexslemonade.org
www.negu.org
www.curechildhoodcancer.org
www.curesearch.org
www.stbaldricks.org
www.thetruth365.org
www.alexslemonade.org
www.negu.org
Tuesday, September 3, 2013
Day 3 - Going Gold
Childhood Cancer Awareness Month, Day 3.
I ordered about 100 large gold bows from the local party store, they were very generous and let me have the bows at cost! I also ordered about 200 small gold bows off of ebay and got a very good deal. I am hoping to get as many people as possible around town to put up gold bows to show their support for Children with Cancer, and also to make donations to the bows, all of which will go to CURE Childhood Cancer. An organization based here in Georgia that funds childhood cancer research as well as offering support to families faced with childhood cancer. I am asking $5 for the large bows and giving the small bows away for free (donations accepted of course!).
So far I have sold about 18 bows. I have only spent one day trying really hard, hopefully I can put some more time into it as the month goes on. It is a very emotional month for me and being emotional is exhausting!
We are also doing a raffle for the "Silas Gold" nail polish this month. We are selling tickets for $5 each. In May, OPI made 100 bottles of "Silas Gold" nail polish and sent it to Silas. He smiled so big when he saw his name on the bottom of the bottle! He said "that's a lot of nail polish, I think we should keep some and give some away". We have given bottles to friends and family, and we have also had 2 auctions for CURE Childhood cancer on facebook, raising nearly $3000. I have no idea how the raffle tickets are selling, I gave them to a few businesses and individuals to sell. I hope a lot comes in for CURE!
I ordered about 100 large gold bows from the local party store, they were very generous and let me have the bows at cost! I also ordered about 200 small gold bows off of ebay and got a very good deal. I am hoping to get as many people as possible around town to put up gold bows to show their support for Children with Cancer, and also to make donations to the bows, all of which will go to CURE Childhood Cancer. An organization based here in Georgia that funds childhood cancer research as well as offering support to families faced with childhood cancer. I am asking $5 for the large bows and giving the small bows away for free (donations accepted of course!).
So far I have sold about 18 bows. I have only spent one day trying really hard, hopefully I can put some more time into it as the month goes on. It is a very emotional month for me and being emotional is exhausting!
We are also doing a raffle for the "Silas Gold" nail polish this month. We are selling tickets for $5 each. In May, OPI made 100 bottles of "Silas Gold" nail polish and sent it to Silas. He smiled so big when he saw his name on the bottom of the bottle! He said "that's a lot of nail polish, I think we should keep some and give some away". We have given bottles to friends and family, and we have also had 2 auctions for CURE Childhood cancer on facebook, raising nearly $3000. I have no idea how the raffle tickets are selling, I gave them to a few businesses and individuals to sell. I hope a lot comes in for CURE!
Monday, September 2, 2013
Day 2 - Statistics
You may have heard the statistic that 80% of Childhood Cancer is cured these days. But remember, that is on the whole. ALL Leukemia is cured 96% of the time, Hodgkin Lymphoma is cured 95% of the time, several other childhood cancers are cured more than 80% of the time. We can't forget though that so many have much lower cure rates. For Stage IV Hepatoblastoma like Silas had, the survival rate is only about 20-30% according to Cincinnati Children's hospital. Less than 10% of children diagnosed with DIPG brain tumors live longer than 18 months from the time they are diagnosed.
This 80% survival rate in pediatric cancer patients is a little skewed as well. This only accounts for children who survive 5 years after their treatment, however, some children relapse after the 5 year mark and die.
Its not good enough. We can't stop just because we've reached an 80% cure rate. That's still 1 out of every 5 children diagnosed with cancer dying. The death rate is too high.
This 80% survival rate in pediatric cancer patients is a little skewed as well. This only accounts for children who survive 5 years after their treatment, however, some children relapse after the 5 year mark and die.
Its not good enough. We can't stop just because we've reached an 80% cure rate. That's still 1 out of every 5 children diagnosed with cancer dying. The death rate is too high.
Sunday, September 1, 2013
Day 1 - September, Childhood Cancer Awareness Month
For the month of September I am going to try and post something about Childhood Cancer Awareness each day. September is National Childhood Cancer Awareness month and being a cancer mom, it is very important to me.
2 years ago, I did not know that September was Childhood Cancer Awareness month. I will know every year from now on! 2 years ago I could not imagine having a child with cancer, I could not imagine losing a child to cancer! 2 years ago, life was very different.
2 years ago I had a happy, healthy (or so I thought) little 3 year old. Full of energy, chasing after his brothers, playing with his dog, and loving his momma and daddy. Things change, I know that, but this was a big change. I would have never imagined that 2 years later I would be mourning the death of my 4th child. My baby. No idea that I would be making posters and gold bows trying to spread awareness for the disease that killed him.
Looking to the future, I don't know what to expect. Things have changed so much. One thing I know though. The Lord is in the future and He will get me through whatever comes. He has a plan. He is already working out His will in my life. He knows how I feel better than anyone else could. People say they know how I feel, most of them have no idea, some of them know a lot, but no one knows exactly how I feel, no one but the Lord. His plans for me are for good, and I choose to trust Him will my life. I continue to trust Him as I always have.
2 years ago, I did not know that September was Childhood Cancer Awareness month. I will know every year from now on! 2 years ago I could not imagine having a child with cancer, I could not imagine losing a child to cancer! 2 years ago, life was very different.
2 years ago I had a happy, healthy (or so I thought) little 3 year old. Full of energy, chasing after his brothers, playing with his dog, and loving his momma and daddy. Things change, I know that, but this was a big change. I would have never imagined that 2 years later I would be mourning the death of my 4th child. My baby. No idea that I would be making posters and gold bows trying to spread awareness for the disease that killed him.
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