Countdown: 84 days until DRIVING FOR DONORS begins!
Well, Here is our very first post about the incredible journey we have already been through as well as the one coming up! Let me start at the beginning.
THE DIAGNOSIS
On March 24, 2006 my son, Patrick, then 10 years old was diagnosed with Leukemia. This devastating diagnosis came after a year of painful suffering with what we then thought was Juvenile Rheumatoid Arthritis! After countless doctor visits, ER trips and specialists in other cities everyone agreed that Pat had arthritis. This child who only 3 months before had been the fastest runner in the fourth grade at The Celebration School in Celebration, Fl was now in a wheelchair unable to walk 1 step. Several long, heartbreaking months later (we really learned firsthand how people with handicaps are treated and looked upon) Pat ended up in the hospital with some strange new symptoms including fever, back ache and test results that didn't make sense.
Pat got sick at his father's house in Davie Florida so he was put into Joe DiMaggios Children's Hospital. When I arrived the doctor took his father and I aside and told us the news that we never expected to hear. She suspected Leukemia. Denial, fear, disbelief and anger followed in those next several hours and days. How do you tell a child that he has cancer? The only thing he knew about cancer was that both his grandparents on my side had died of it before he was even born. The scariest thing I have ever done was to look into his eyes while the doctor told him the diagnosis. Pat is so smart and mature for his age but was filled with fear upon hearing what the doctor said. She told him that it was treatable and they were going to start chemotherapy right away. I was too scared to mention CANCER to Pat or to talk about the possible effects from the chemo treatments. I wanted to let him digest the information and have time to think and process what was happening to him. The next day while Pat and I were alone in the hospital room he turned to me and said something that took away all my fear and is something I will never forget. Pat said "mom, I'm glad this happened to me, I'm glad I got Leukemia it is going to teach me something". I thought he meant he felt he had been bad and deserved this diagnosis! I said "Pat, what do you mean?" He looked at me and said "Having Leukemia is going to teach me something, I don't know what it is yet but I am going to learn something from this, A lesson that I will need to know in my life and this will make me stronger." I knew my son was amazing before he said that but now I was absolutely blown away by his maturity and insight. What a fantastic person this child was who was teaching me to deal with my fear and be stronger!
TREATMENTS
Months of chemotherapy followed as the protocol for his Leukemia is for 1 year of intense chemo and then 2 1/2 years of maintenance chemo. Sometimes we go to St. Joseph's Children's Hospital 3 times a week and spend all day there getting chemo treatments and shots. He needs spinal taps with chemo meds put into his spinal fluids once a month. Chemo "pushes" that make him sick and shots in both legs 3 times a week! Even with all of that we have been really lucky this year and treatment has gone well with very little setbacks. We see some of the other children at the hospital and how bad they are feeling and we do feel blessed for him to be doing so well.
THE GRAND IDEA IS BORN
In July, Pat was in the hospital for a week and he watched a show on TV that changed our lives. There was a 20/20 program about celebrity Entrepreneaur Farrah Gray. At the end of the show they featured his sister, Greek Gray, who had Leukemia and couldn't find a matching marrow donor. We found out that there is a CRITICAL shortage of minorities on the NAtional Marrow Registry and it was hard to find matches for certain ethnic groups. Pat is part Hispanic (dad, William, is from Cuba) and he wanted to know what would happen if he needed a transplant and couldn't find a match? Several weeks later we were back at the hospital for a few days and we found out that Greek Gray had passed away. He was so saddened by this that he said he needed to do something to help! DRIVING FOR DONORS was born. Originally, Pat had the idea for a local marrow drive and then he changed into a National Marrow Drive where he would recruite donors for the National Marrow Registry. He picked up an atlas and with the help of his aunt, Michele Marden, picked his cities and his route (the boy loves maps!) 28 cities later our plan was hatched. Little did we know at that time that we had alot more work to do in front of us!
DRIVING FOR DONORS AND THE NATIONAL MARROW REGISTRY
We came to learn that that in order to join the National Marrow Registy, people have to pay approximately $52 for tissue typing fees to get their cheek swab samples tested. For us to add 2007 new people to the registry we would need to raise over $100,000 in tissue typing fees alone. I thought I was busy taking him to chemo 3 times a week with a husband, Keith, and 3 other children at home (Jocelyn 14, Nathan 12 and Tucker 6) , I hadn't seen anything yet!
SELLING HIS HEAD ON EBAY
Pat's first grand fundraising scheme came when he started to lose his hair from the chemotherapy. He was really sad about losing all that hair and we tried to make it a positive experience. He and I came up with selling advertising space on his bald head on eBay to raise funds for our account with The Marrow Foundation (fundraising arm of the National MArrow Donor Program NMDP). We place the ad on eBay and an overnight sensation was born! Suddenly tv and radio stations were calling for interviews. Who was this 11 year old with the great advertising idea they wanted to know? Unfortunately our eBay ad did not sell and Pat's spirits sank. Why, he asked, would someone pay $10,000 for a ride on a float at a parade in Miami (which he had seen on the news while at his dad's) but no one wanted to pay $5,000 to advertise and actually help him save lives? What was wrong with these people, he asked? We reposted the auction and this time a wonderful thing happened! A company in San Diego, CA called All Road Communications which specializes in satellite phone sales and service, bought the head ad for $5,100. Way to go Pat! and ALL ROAD SAT.COM was now added to his head!
LOOKING FOR THE GOOD PEOPLE OUT THERE TO LEND A HAND
We are still fundraising, trying to sell ads on his head, planning our drive which begins in Tampa Florida on May 5th 2007. Several people and companies are helping and we receive emails from some really amazing people. But we have learned how difficult it is to get people involved in a cause and help out. To give an example, the Associated Press did a story on Pat and released it on the wire. SEveral newspapers and websites picked up the story and ran it all over the country. You know that hundreds of thousands of people read that story and saw those pictures. You know how many people emailed? 4 You want to know how many people donated? 2 And how much? $50 (which we are very grateful for and thank you for donating you 2 wonderful people!). We also learned that when people actually got involved with Pat in one way or another they were committed to the cause and some people went all out to help, sometimes with stunning generosity and unwavering persistence. We are going to have a special posting to give our thanks to them next, so keep watching.
84 days till we begin our drive in Tampa. $85,000 left to raise
THE DIAGNOSIS
On March 24, 2006 my son, Patrick, then 10 years old was diagnosed with Leukemia. This devastating diagnosis came after a year of painful suffering with what we then thought was Juvenile Rheumatoid Arthritis! After countless doctor visits, ER trips and specialists in other cities everyone agreed that Pat had arthritis. This child who only 3 months before had been the fastest runner in the fourth grade at The Celebration School in Celebration, Fl was now in a wheelchair unable to walk 1 step. Several long, heartbreaking months later (we really learned firsthand how people with handicaps are treated and looked upon) Pat ended up in the hospital with some strange new symptoms including fever, back ache and test results that didn't make sense.
Pat got sick at his father's house in Davie Florida so he was put into Joe DiMaggios Children's Hospital. When I arrived the doctor took his father and I aside and told us the news that we never expected to hear. She suspected Leukemia. Denial, fear, disbelief and anger followed in those next several hours and days. How do you tell a child that he has cancer? The only thing he knew about cancer was that both his grandparents on my side had died of it before he was even born. The scariest thing I have ever done was to look into his eyes while the doctor told him the diagnosis. Pat is so smart and mature for his age but was filled with fear upon hearing what the doctor said. She told him that it was treatable and they were going to start chemotherapy right away. I was too scared to mention CANCER to Pat or to talk about the possible effects from the chemo treatments. I wanted to let him digest the information and have time to think and process what was happening to him. The next day while Pat and I were alone in the hospital room he turned to me and said something that took away all my fear and is something I will never forget. Pat said "mom, I'm glad this happened to me, I'm glad I got Leukemia it is going to teach me something". I thought he meant he felt he had been bad and deserved this diagnosis! I said "Pat, what do you mean?" He looked at me and said "Having Leukemia is going to teach me something, I don't know what it is yet but I am going to learn something from this, A lesson that I will need to know in my life and this will make me stronger." I knew my son was amazing before he said that but now I was absolutely blown away by his maturity and insight. What a fantastic person this child was who was teaching me to deal with my fear and be stronger!
TREATMENTS
Months of chemotherapy followed as the protocol for his Leukemia is for 1 year of intense chemo and then 2 1/2 years of maintenance chemo. Sometimes we go to St. Joseph's Children's Hospital 3 times a week and spend all day there getting chemo treatments and shots. He needs spinal taps with chemo meds put into his spinal fluids once a month. Chemo "pushes" that make him sick and shots in both legs 3 times a week! Even with all of that we have been really lucky this year and treatment has gone well with very little setbacks. We see some of the other children at the hospital and how bad they are feeling and we do feel blessed for him to be doing so well.
THE GRAND IDEA IS BORN
In July, Pat was in the hospital for a week and he watched a show on TV that changed our lives. There was a 20/20 program about celebrity Entrepreneaur Farrah Gray. At the end of the show they featured his sister, Greek Gray, who had Leukemia and couldn't find a matching marrow donor. We found out that there is a CRITICAL shortage of minorities on the NAtional Marrow Registry and it was hard to find matches for certain ethnic groups. Pat is part Hispanic (dad, William, is from Cuba) and he wanted to know what would happen if he needed a transplant and couldn't find a match? Several weeks later we were back at the hospital for a few days and we found out that Greek Gray had passed away. He was so saddened by this that he said he needed to do something to help! DRIVING FOR DONORS was born. Originally, Pat had the idea for a local marrow drive and then he changed into a National Marrow Drive where he would recruite donors for the National Marrow Registry. He picked up an atlas and with the help of his aunt, Michele Marden, picked his cities and his route (the boy loves maps!) 28 cities later our plan was hatched. Little did we know at that time that we had alot more work to do in front of us!
DRIVING FOR DONORS AND THE NATIONAL MARROW REGISTRY
We came to learn that that in order to join the National Marrow Registy, people have to pay approximately $52 for tissue typing fees to get their cheek swab samples tested. For us to add 2007 new people to the registry we would need to raise over $100,000 in tissue typing fees alone. I thought I was busy taking him to chemo 3 times a week with a husband, Keith, and 3 other children at home (Jocelyn 14, Nathan 12 and Tucker 6) , I hadn't seen anything yet!
SELLING HIS HEAD ON EBAY
Pat's first grand fundraising scheme came when he started to lose his hair from the chemotherapy. He was really sad about losing all that hair and we tried to make it a positive experience. He and I came up with selling advertising space on his bald head on eBay to raise funds for our account with The Marrow Foundation (fundraising arm of the National MArrow Donor Program NMDP). We place the ad on eBay and an overnight sensation was born! Suddenly tv and radio stations were calling for interviews. Who was this 11 year old with the great advertising idea they wanted to know? Unfortunately our eBay ad did not sell and Pat's spirits sank. Why, he asked, would someone pay $10,000 for a ride on a float at a parade in Miami (which he had seen on the news while at his dad's) but no one wanted to pay $5,000 to advertise and actually help him save lives? What was wrong with these people, he asked? We reposted the auction and this time a wonderful thing happened! A company in San Diego, CA called All Road Communications which specializes in satellite phone sales and service, bought the head ad for $5,100. Way to go Pat! and ALL ROAD SAT.COM was now added to his head!
LOOKING FOR THE GOOD PEOPLE OUT THERE TO LEND A HAND
We are still fundraising, trying to sell ads on his head, planning our drive which begins in Tampa Florida on May 5th 2007. Several people and companies are helping and we receive emails from some really amazing people. But we have learned how difficult it is to get people involved in a cause and help out. To give an example, the Associated Press did a story on Pat and released it on the wire. SEveral newspapers and websites picked up the story and ran it all over the country. You know that hundreds of thousands of people read that story and saw those pictures. You know how many people emailed? 4 You want to know how many people donated? 2 And how much? $50 (which we are very grateful for and thank you for donating you 2 wonderful people!). We also learned that when people actually got involved with Pat in one way or another they were committed to the cause and some people went all out to help, sometimes with stunning generosity and unwavering persistence. We are going to have a special posting to give our thanks to them next, so keep watching.
84 days till we begin our drive in Tampa. $85,000 left to raise
Labels: chemotherapy, child, ebay, fundraising, greek gray, leukemia, national marrow donor drive, national marrow donor program
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