American Cancer Society Just Does Not Get It.

My response to:

Bald Barbie Demand is an Over-Reach – 

UPDATED

Posted on January 13, 2012 by 
Mr. Becker’s apology is appreciated, but shows the American Cancer Society still does not get it.  Why was I upset?  His blog still does not address the real problem.  The American Cancer Society does very little to help with childhood cancer.  Mr. Becker has written many articles about cancer; the only one I have found about childhood cancer is this one.  Parents with children who have or have had cancer are starving for some show of care by the American Cancer Society.  The numbers are staggering.  There is a lack of research dollars spent on all of childhood cancer when compared to breast cancer research alone.  I am thankful for the dollars spent on breast cancer research; my wife has personally benefitted.  Why is it so difficult for us to raise research funding for childhood cancers or even to raise awareness?  The American Cancer Society parades kids in front of cameras and uses children in their advertising; yet less than 1% of their research funding goes to childhood cancer.  Mr. Becker, that is why we as parents are upset.  It’s not just the article about a bald barbie doll; we want to see the attitude of the ACS change.  All cancers, including childhood cancers need research, but our pleas to your organization continue to fall on deaf ears. No one wants to hurt the American Cancer Society.  We also do not want the American Cancer Society to continue to ignore the needs of children who are living with and dying from cancer. Yes, we would like an apology.  We would like to hear someone say, “We have been neglecting childhood cancer research, and we intend to do something about it.”  That would be an apology we would all be glad to hear.  We are still waiting….

It has been a while…

I have not written in a long time.  I have been waiting for a good time,  when my heart was not hurting so much.  I just have not been able to reach one of those kind of times in a while.  I have been looking through pictures tonight.  I have laughed at some,  cried at others,  some have touched my heart again.  I could hear Andrew’s voice in my mind laughing with me at some,  I really miss his belly laugh.  He loved to laugh and loved to make others laugh.  I miss his personality,  our whole family does.  He had a way of making tense situations not be so tense.  I have thought of my dear Andrew a lot to day.  It is an anniversary day of one of his DIPG friends, Alexis.  I have often wondered what the best thing is to say to someone on these day’s.  Nothing any one says to me ever makes a difference.  What makes a difference is not words,  but there presence.  It is nice when people just talk about Andrew with us.  It is always such a joy to our hearts when people ask about him, share stories about him with us.  It does not matter if we have heard the stories before,  they are a joy to here again.  One thing that I have learned is that grieving a child is never over.  And I have had to learn that it is ok for us to still grieve.  I know some DIPG parents read my blog at times and I wish I could say that things get easier.  After all I am a pastor and I am suppose to have all the right words to say,  but I still have not found them.  I learned along time ago that my job is not to solve every one’s problems and hurts and difficulties.  I learned that it is ok that I don’t have all the answers.  I learned my job is simple to bring them to the one that does.  There are many truths I continue to hang onto today.  Some calling clinging faith,  I just call it faith.  Psalm 55:22 ” Cast thy burden upon the Lord and he shall sustain you,  He will never suffer the righteous to be moved.”  A song that has become more special to me is Burdens are lifted at Calvary…

1. Days are filled with sorrow and care,
Hearts are lonely and drear.
Burdens are lifted at Calvary,
Jesus is very near.

CHORUS:
Burdens are lifted at Calvary, Calvary, Calvary;
Burdens are lifted at Calvary, Jesus is very near.

2. Cast your care on Jesus today,
Leave your worry and fear.
Burdens are lifted at Calvary,
Jesus is very near.

3. Troubled soul, the Savior can feel
Every heartache and tear.
Burdens are lifted at Calvary,
Jesus is very near.

I am very thankful that my Lord has been very near to me the past couple of years,  It is the only way we could have made it.

 

Something is missing?

We all got packed the car was loaded, there was a brief silence and then the question. Can I drive. Stephen’s favorite three words now. I start listing all the reasons why this night would not be good, mainly it is because it is late and it is night. We pull around to the front of the church and head out for Shady Green Pastures. It is the only kind of camping I do. Indoor plumbing, beds, kitchen and indoor bathroom. For the ruffing part there is no air… Just as we begin to get on the interstate Sandy made the were going on a trip obligatory statement, ” I feel like we are missing something.” As we all began to go through the list of things we brought, what went across my mind is, “Yes we are missing something.”. We are missing Andrew. This the the Shady Green Pastures trip, one of his favorite places to go. It is a feeling I have all the time now. When we are at home and things are quiet, Something is missing. We we go out to eat, one of Andrew’s favorite past times, Something is missing. We we head over to the church, or watch the orchestra, or the kids stand up to sing, I think something is missing.

It is not that something is lost, but something is missing. I am enjoying our vacation at Shady Green Pastures. I have really enjoyed playing games with Sandy and Stephen and Charis. We had a wonderful time with several families front he church who came out to join us to day. In the back of my mind is always the gnawing feeling that Something is Missing. I laid down to sleep tonight and Andrews smile just appeared in my mind and it was then I realized what was missing was him.

He is not lost, I did not start to panic and search frantically around the camp ground because I could not see him. There is just an emptiness in the pit of my stomach that will not go away and it is not the chemo. Something was missing but I am so thankful that I know where he is. It does not take away the missing feeling, but it does remove the fear.

Happy Birthday Super Andrew

Today is a special day,  it is Andrew’s 10th birthday.  There are so many things I would like to write today but I can’t.  We are going to celebrate at Olive Garden today.   This is not going to be an easy day for me.  Andrew loved holidays and special days,  now they seem so empty to me.  I don’t like any of them.  There is apart of me that wishes we could just do away with all holidays.   Then I remember how much Andrew loved them.  Things that remind me of my son are bitter sweet.  Every time I walk into our living room and see the bay window I am reminded of the hospital bed that sat in front of it, and can almost hear Andrew calling out “Daddy”.  When I look in his room,  I always thing of the excitement of the morning of our wish trip.  He sat on the edge of his bed as I put his shoes on he smiled from ear to ear and kept asking if it was time yet.   Every time I walk in the church I see him sitting there in his shirt and tie, so happy for the special shirt Aunt Annette made for him so he could dress for church again.  I guess as hard as holidays are  for me, they do remind me of my Super Andrew, and I am thankful for that.   Happy Birthday Andrew.  I love and miss you very much.

I thought this quote was something that should be posted.

‎”If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died — you’re not reminding them. They didn’t forget they died. What you’re reminding them of is that you remembered that they lived, and that is a great gift.”
-Elizabeth Edwards

Andrew

I miss you buddy.  I was thinkings today how much I miss your smile and your courages spirit.  I miss watching you play softball and watching your smile when you run around the basses.  I miss hearing your belly laugh and watch you close your eyes because you are laughing so hard.  I miss watching you and Stephen play the Wii and you getting upset when he doesn’t let you win.  I loved seeing your eyes light up when we decide to go to olive garden or red lobster to eat.  I miss hearing you yell DADDY as loud as you can because you needed me for something.  I miss our boxing matches in the living room.  I miss playing nerf basketball with you in your room.  I miss my two hugs a day.  I miss hearing you tell me you love me.   I missed watching your excitement and shady green pastures when you caught a fish.  I miss watching you paint wooden crafts and ceramics.  In short,  I really miss you.

I am so glad the next time we are together,  I will never miss you again.

DAD

Why am I here?

That is the subject of my message this morning. I cannot help but think about Andrew this morning. Why was he here and only for 8 years. Was there a purpose for his short life? The Answer is an easy one. Andrew brought light in to many dark places and touched so many lives. As tears rush down my cheeks this morning I cannot help but think how Andrew loved to do things for others. He loved to give presents and make things for other people. He loved to laugh and he could make others laugh as well. When he was around 5 or 6 he ask me to read his fortune cookie. I told him it said he must give his dad two hugs a day. It was something Andrew never forgot. He would often come up to me, give me two big hugs and say, “Two hugs a day!”. How I miss him this morning. His smile and excitement when he was able to go to church. He loved being around his church family. I have thought of Andrew often this week. When I walk in his room, I remember the morning we were getting ready for his make a wish trip, there was such joy that morning. Andrew and I were sitting on his bed and laughing because I could not get his sock on. He smiled and looked at me and said, ” It’s ok dad, I can’t put in on either. We just laid back an laughed some more. Andrew brought so much laughter and joy into our home. The thing I miss the most about Andrew is just being near him. Seeing his eyes, hearing his voice. I still hear him call me sometime when I am in the back of the house. I miss seeing him ride his bike, sing with Charis and Stephen. I miss boxing with him. He loved to pretend box. We would go round after round with those boxing gloves. I miss playing the WII with him and watching his face when he won, or fusing at Stephen when Stephen won. I miss my boy this morning but I know why he was here. He brought a simple joy into my heart and life. I hate the pain I have in my heart this morning. It is not the pain of bitterness, or anger. It is a pain of longing. It is a pain of missing. So why am I here? Because there are others that need me today. In just a couple of hours I will stand behind a pulpit and try to answer this question today-Why am I here? Is there a purpose to life? The Bible tells us we all have a purpose in life and it is one my little boy fulfilled. He brought his father and mother much joy, happiness to others and Glory to God. Mission Accomplished

It gets easier…

What a lie.  Losing your child never gets easy,  you just get better at dealing with it.  It not like loosing a football game or loosing your wallet.  Those things can be replaced.  It’s loosing something that cannot be replaced, nor forgotten.  It is not something you can just smooth over.  And that is ok.  I don’t want the feeling to go away,  it is a reminder for me of Andrew.  It is a painful reminder,  but a reminder that helps me.  Every time I miss Andrew or see something that reminds me of him my first response is always a sigh or a cry,  but then I remember where he is.  He is in the presence of my Lord.  He is not hurting anymore.  He is using two legs to walk or run.  He is not in heaven grieving for me.  He is in heaven with a joyful and thankful heart.  What I feel is the pain of separation.  The joy I have is that this separation is just temporary.  Many people ask how you get over it.  My answer is simple you don’t,  but you can get through it.  I like what our Lord told Paul,  “My grace is sufficient.”  The hurt that I feel is not strong than the grace the Lord has provided.  Some day’s the day seems Long,  the trials seem hard to bare.  I am tempted to complain, to murmur and despair.  I need to remember that Christ will soon appear to take the redeemed away.  Our enemy(death) will be banished and we will lay our burdens down.  When we see Christ.  Thanks be to God, which giveth us the victory through our Lord Jesus Christ.  The pain does not get easier,  but one day,  It will be gone.

I am still here daddy

I was having a bad day. Every where I turned things just kept reminding me of Andrew. Sometimes it just happens. I don’t plan on it, it just happens. Maybe I read something or see something, sometimes I just allow my mind to think to long about something and before you know it tears of sorrow will begin to flow. I was having one of those kind of mornings, the day was not starting so well. Charis Joy saw that I was crying and came over to sit on my lap. With eyes full of love she put her arms around my neck and gave me a big hug and a kiss. Then she whispered in my ear and said, “I know I am not Andrew, but I am still here daddy.”. Those words have never been forgotten by me. I am still here, daddy. In one simple sentence she provided a comfort for me. Life does continue and the days keep coming and I am still here. And my precious little girl is still here to. There have been so many days that she has done her best to be such a little helper around the house. She enjoys cooking. She is a good dishwasher, not her favorite thing to do, and she help swith the clothes. Her most important jobs these days is those times when she comes to sit on my lap and give me big hugs and remind me that she is still here. What a blessing our children can be.

My Hero on Memorial Day

My hero did not battle in either one of the great wars.  He was not at Korea or at Vietnam.  He did not go to the middle east.  His battles was fought in DeWitt, MI against an enemy that did not fight fair.  He fought with a tumor called a DIPG.  He fought with courage, with all he had.  He fought with joy and love.  He was not one to complain, or gripe.  He loved living and loved helping others.  There have been many others that fought in this battle with him.  The sad thing about this battle is that his enemy did not fight fair.  And the resources needed for victory do not exist.  I am very thankful for all the men and women of our armed forces have done to give us freedom in this great land of ours.  We have defeated every enemy we have faced on the battle field, but we are not winning the war with childhood cancer.  It is like beating your head against a wall trying to raise awareness for a battle we could win if we only recognized the need to join the battle.  Look at the difference awareness has made in the area of breast cancer.   You can find pink ribbons and bows every in October.  How many gold ribbon boxes do you see in the stores during September.  I have yet to see one.  How many times do we see our kids parade in front of the American Cancer Society Relay for life events.  Do you know how little money they spend on childhood cancer research.  I am going to include a letter that I received from them.

Good afternoon Shawn!

I was able to speak with my research liaison and he gave me some information on what the American Cancer Society has done around Childhood Cancer research.  I’m attaching some of the highlights for you.  A sizable chunk of money has been dedicated to childhood cancer research……However, like you mentioned in our conversation……. in the over-all scheme of things Childhood Cancer research is just a small part of what we do here at the American Cancer Society.  Approximately 3% of all research expenditures are grants in Childhood Cancer.  We are not just an organization that specializes in Childhood Cancer…rather we are committed to eliminating cancer (as a whole) as a major health concern.  So while it may seem like a small chunk, I like to look at it in the fact that much of the research going on that is not necessarily specific to childhood cancer could have positive impacts on childhood cancer issues…..on breast cancers, on colorectal cancer…..on any kind of cancer!

As always, don’t hesitate to contact myself or our 800 number if you have any other questions….I can’t always guarantee that I’ll have answers for you, but I’ll be able to direct you to the appropriate person.

Sincerely,  Kate Wilson, American Cancer Society

That 3 percent represents every form of childhood cancer. A little over 4 million in 2008.  They spent over 60 million in breast cancer research alone.  Over 20 million in prostate cancer research.  Yet only 4 million for all forms of childhood cancer.  It is not a fair fight.

I am writing this note today because we need you to raise your voice to the lack of childhood cancer awareness in our society and start making some noise.  Call the American Cancer Society and ask why so little is done for childhood cancer research.  Call companies and ask why they don’t put gold ribbons on their products in September.  Call you college teams and pro teams and ask them to wear gold for our children.  Let us together say that our children are warriors and they need our support.

What would happen if millions and millions of dollars went into childhood cancer research.  I have a feeling it would make a difference.  We Need your help.  My hero reminds us all of the loss.  Let’s not be satisfied until our voices are heard.