Time for a 180

Now that the coffee is kicking in and the house is still quiet this morning, I have a chance to write and remember all that has been going on this week. As some of you know there where two things that made national news this week, but only most of you know one of the stories. Both of these stories involved drugs and death, which is something that attracts news media, but only one story was really noticed by the world because the drugs were too many and the death was too young. In comparison, only a handful of people remember the story of the many others suffering and lost because of the drug shortages. The celebrity that passed away this week will never be forgotten because of the amazing and wonderful talent she shared with the world, which is deserving, but for all of the children who are facing the life saving drug shortage crisis both now and in the near future, they will not make the national headlines or be remembered because they never had a chance to share their talents with the world.

 

I look at the world we live in today and wonder what it was like 50 years ago. Were people really this backwards where they let their kids suffer and die because they wanted to go see Elvis Presly or the Beatles? I’m not saying they do this directly, but when you think about how much money goes into the entertainment and sports industries vs. funding for research for the epidemic of life threatening diseases in our children, is there any way that you see this as moral or right? Would it be so bold of me to say that we are sacrificing our children so that we can afford the latest fashion or electronic device? Do you know that this trend has been going on throughout all of history? Back a few thousand years ago people did the most unmentionable things in the form of worship to please their gods. This is about as gorey as I can imagine, but they would create an image of their god and would fill it with fire and sacrifice their living children to it because their worship to their god was more important than life itself. Here is the image so you won’t forget.

This is how backwards I see the world today and this needs to stop.

 

I love to listen to good music, watch amazing movies and see great sporting events, but these things don’t interfere with my childs life saving treatments or raising awarness that kids need a life too. I just wish everyone would do their part and carve out some time in their lives to do something great instead of being so consumed with the their favorite tv show every night. People can make a difference if they really want to and you don’t want to wait until something bad happens to be forced out of the lifestyle that your work and money has paid for.

A Day in the Life of Fighting Cancer

Two days ago I was looking at facebook and reading a few things about Pearl Harbor and the attacks that happened so many years ago. The first thing I noticed was that it was not talked about as much as September 11th, 2001. It was a long time ago and to this generation of facebook users it is not as fresh in the mind as 9/11.

Today I went with Lincoln and Jenny to Doernbechers Childrens Hospital to stay for the weekend and for the first time I felt like our personal D-day was a distant memory. But that didn’t keep me from talking about it anyless. One of the reasons I took the day off work to go to the hospital was because they were having a radiothon to raise money for the hospital that will cure my son. My favorite Country radio station for over 10 years was hosting and asked for people to share there stories on the air. I couldn’t resist the opportunity to raise awareness for kids fighting life threatening diseases by using my sons story. I sat down with the radio host and let hundreds of thousands of people listening around Portland and online around the world that we needed their help to find a cure for kids cancer, cystic fibrosis, diabetes and many other diseases. If there was every a time to stand up for something it would be now. We have technology that reaches around the world at lightning speed and people are sitting in the audience waiting for something amazing to happen.

A New Direction

Thank you for visiting my blog to hear more about Lincoln and his new journey. I promise I will have plenty to share and everyone will have a chance to hear. This is a compilation of the first few days after Lincoln was diagnosed with A.L.L. (leukemia)

Day 1 July 2 (from Facebook Notes)

We are going to be in for a long haul this next week and for several months to come. It feels like a dream we are in and it was just as surreal to hear that Lincoln has been diagnosis with Leukemia and will be treated with chemotherapy. We can’t ask enough for your constant prayer and support for months and years to come. The survival rate is higher than ever for this disease (96% in children) but your support is a huge percent of that. We have never prepared to hear this kind of news but we will trust our God and our doctors and hope miracles happen in the process of this new chapter of our lives. We want to thank you for your generosity in prayer in advance and for the closer friendships we will find along the way. Brian, Jenny, Emma and Lincoln Lord my God, I called to you for help, and you healed me. (Psalm 30:2 NIV)

My Son has Cancer July 2, 8pm (from Facebook notes)

Thank you again to all who are thinking of little Lincoln at this time and praying for miracles which happen every day. The hardest part is even believing that one day ago my son was playing at Grandmas and got a tummy ache, and the next day he has cancer.   MY SON HAS CANCER. There is no other way to say it. Our life is at a turning point that has taken us to the edge of our faith, to where we will either run away, or jump headlong into the journey that cancer will take us.  We are falling, there was no hesitation, no denial, just a single jump to help our son fight to the victory.  There will be pain and sadness, loss of our life as we knew it and financial difficulties, but we have leaped into an unending canyon that is filled with God’s Mercy and Grace.  We have an incredible support system that shares an exponential amount of prayer which has sustained us this far. Now we pray together even to the point that cancer miraculously disappears.  They say things happen for a reason, but sometimes they happen so we will reach out and  love each other sacrificially as Jesus did.   We know that John 3:16 says For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.   But 1 John 3:16 defines Love as:  This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers and sisters.  We thank you for offering yourselves to us and we will call on you, but don’t stop with us when you know you have the capacity to love your neighbor as you love yourself.  Lincoln will fight and will win, with your help and in the name of Jesus, the son that gave his life.

Day 2

He had a good day today with a long nap and a transfusion before more chemo. We are still learning about what will happen this week and we feel more equip to battle this disease every day. We appreciate everyone’s thoughts, prayers and offers of support because this is the lifeline for the family. There is only one thing we have decided that is difficult to ask of our family and friends. As the chemotherapy goes on this week Lincoln’s will have more and more risk to infections. Although the hospital is very clean and visitors can sanitize and wear masks, we want as little risk as possible during our short stay. As long as Lincoln can get out of his room and play we feel uplifted through your words and phone calls and as much Facebook as possible. Just know we want you to see that he is not suffering all day in a bed as I share video of him playing. He seems to be the only one on this floor that has that luxury. As soon as we know we have an exit strategy we will invite people to visit, but for now enjoy every minute of your long weekend and celebrate the life you live now because it could change in an instant. Keep praying, keep believing, keep hoping.

A New Direction

Here’s what’s new: his animea is getting better, his white blood cells (both good and bad) are decreasing, he has had very minor side effects to the treatment but that’s not all. We very well may be going home tomorrow!! Can you believe it? Lincoln has had more prayer and good thoughts sent his way than one could ever imagine. The evidence of God’s grace and mercy are abundant. It’s actually almost to good to be true, under the circumstances. Thank you all, you made a difference. But we all know there is still a journey to complete. For the next three years our lives will change dramatically to keep this little one healthy. Keep praying, keep hoping, keep believing. More soon…

Going the Distance

Tonight feels like the night before graduation from high school. For a very long time, in some cases 4 years and in others, 4 days, we prepare to go out into the great unknown. The excitement of completing the course and the fear of the unknown, while still knowing next to nothing when it comes to the real world, are stirring inside. We just took a crash course and now were off to finish this race called life. There are many obstacles that dissolved before us from the time Lincoln was diagnosed until now, but there are a few more that have an opportunity to present serious challenges.  We have heard a lot about the steroid Dexamethasone that has some more serious side effects from constipation to extreme mood swings, and that could be for the next 6 months. We may be leaving tomorrow but we will be back every Monday and Thursday for clinic. There are still some unknown genetic issues we could discover that could complicate or even lower some risks. The biggest thing is a very real change in lifestyle that could be 3-5 years until he is completely cured. Cancer has been exposed to the medical field and is losing it’s power, but it can still be sneaky and it still kills 1000s of children each year. I refuse to believe medicine and doctors are the only chance of survival from life threatening diseases. God, family and friends who support the victim of cancer with prayer, communication and every day living needs are more significant than could be expected. Thanks is not enough from our family to yours. With so many blessings We want to give it all back and then pay it forward to someone else in need.

Cramming for Finals

As we prepare to leave the hospital we carry a load of information. We were not prepared for leukemia but we are preparing for Lincoln’s journey, as fast as possible. There is a Manuel of instructions we need to follow closely to care for our boy. No more nurses doctors or hospital room to stay on course, it’s time to sail this ship. Lincoln is still doing great as a little boy should but his blood counts are getting to the lowest point. Killing cancer cells means killing the bodied immune system temporeraly. Now come the tough part. The road ahead is long and rough but we are survivors.

I have many entries on our Caring Bridge site that I may or may not add to this blog later, but for now you can continue reading and visit them now @ http://www.caringbridge.org/visit/lincolndanieljones/journal/21

Crushed

Somedays there is just one word that comes to mind. Today that word is hard and heavy. Although it was a day of accomplishment with the unforeseen challenges that I would face, that one word taunted me. The weight, the hurt and the empathy I have for my son try to CRUSH me inside.

I have looked at him many times in his life and told myself that he will be my boy for life. He may be the only one I ever call Son and he will be with me as we grow old. Now my hopes are thinning as I realize that he has a life threatening disease. I can tell myself that my God is in control of our lives but my feelings are real and strong and I cannot deny them. I have so much and so many to lean on but now that I see two ends to his life, one old and one young, my life feels twisted and battered. Each day when I see his face and in the middle of the night when I serve his needs I know that these are the moments I own, but the feelings reappear. I do not fear when he is so close and I don’t cave in when I go to work but when I see him suffering in the security of his own room, my heart begins to fragment.

I always imagined a moment in my life when everything was stripped away and nothing mattered anymore. Now I live with the reality that it could be. My faith may be shaken in that moment and I may feel like I am just another organism on this evolutionary food chain but regardless of my feelings, these words will remain a timeless truth:

The Lord is close to the brokenhearted and saves those who are crushed in spirit. (Psalm 34:18 NIV)

Heartbroken

I think I had a dream last night and I don’t remember many details, as most dreams are hard to remember, but I remember the emotion behind it. I felt like my eyes were tired, like I couldn’t look into the face of cancer anymore and show my bravery. I felt like I was heartbroken and then today that dream began to materialize. I just read one post on facebook, just one post from one person that spoke of 3 children that died in the last 18 hours. I have become aware of over 100 kids with cancer since my own sons diagnosis and I have become aware of many who have passed away as the cancer consumed their little bodies. I am aware that on average 46 kids are diagnosed everyday with cancer and 7 die. Today I knew of 3 that died which means there may have been more than the average 7 since there are thousands more that don’t even use facebook. I also heard many parents who have children doing well with their treatment who have felt threatened by cancer after remission. I don’t want to be one of those parents because I wish my son never had cancer to begin with. I face cancer everyday, but today is different, the losses are to many and are no good reasons, none.

It seems that life moves at a pace that no one can keep up with, but it is also a race to get as much out of it before it expires. We run this marathon like it were a 40 yard dash and we push and shove to get ahead because it is a competetive race. There is very little room for mistake and those who are good at what they do win when they minimize their mistakes. Most people like winning and no one enjoys losing. With most things in life there always seems to be a prize, but for kids with cancer these prizes are to far out of reach. We all know life is too short but we rarly look at the short life that kids with cancer have. You may be in this race, but you don’t have to be the winner, you just need to never give up, and when you never Ever give up you cannot fail. Watch this video and imagine the life of a child with cancer as I imagine my son in this race we call life.

Dadvocate 2011

Attention all dads, those who have children with or without cancer, listen as if your child’s life depends on it. What would you do if your daughter had a boy who wants to take her for a ride in his new car? What would you do if an older boy is bullying your son? What would you do if a stranger is hanging around your kids school? What are you going to do when you can’t protect your child because the doctors have diagnosed them with cancer?

You have a choice, do not become immobilized by fear and worry over time and money. Plan ahead and become a Dadvocate for the cause in which you are fighting for. You have the power when you move in the right direction and work together with other Dads who are advocating their causes. When your child’s life is consumed with something beyond control, giving up and giving in is ok as long as you are being consumed with the passion to fight for your child. Let’s begin a revolution by turning off the tv, giving up that hunting trip this year, fixing cars with your buddies or whatever takes your attention away from your child so you can fight for their lives. Don’t let your fantasy football team consume you when your son or daughter need you the most, become a Dadvocate today!