Make A Child Smile

John's Story
written by mom Lorraine

My son John was born on January 26th, 1995. He was a much loved and awaited baby - his older brother Nick had been praying for a brother since he was 3 and our John was born 2 weeks before Nick's 6th birthday. John's sisters were 7 and 4 and a half at the time, and they loved him so much - he was like a living baby doll to them. John weighted 9 lbs 4 oz at birth and was 26 inches long!

He appeared to be a strong healthy baby, but it was soon apparent that he had asthma like his older sister and brother did. We spent many nights at the ER, and then it was discovered that John had a dust mite allergy. After one bad attack, he was given a nebulizer, put on Singulair, and his asthma was finally under control. We thought that the worst was behind us, sadly we were to find out later that it was not.

John attended 3 and 4 year old preschool, kindergarten and first grade. He was a happy child and we all spoiled him! At the end of kindergarten I filmed John singing his graduation songs! One of them was called First Grade, First Grade, it was sung to the tune of New York, New York. I remember his sweet voice, John loved to sing "First Grade, First Grade, I'm coming your way, I want to be a part of you, First Grade....". Little did we know what first grade held for him.

John was always a religious child, very close to God, he had been consecrated to God our father, through the Sacred Heart of Jesus and the Immaculate Heart of Mary as soon as I knew that I was pregnant with him. He was my miracle child, my one in a million chance of ever conceiving again. John was consecrated to God our Father again on his baptism day, February 12th, 1995, when he was 17 days old. I always knew he would suffer in this life, I just didn't know it would begin so young.

By the time John turned 7, in first grade, he was 4', 4'' tall, all the other children were so much smaller than him. Shortly after John turned 7, he started getting ill, leg pains, daily fever and headaches. For 6 weeks I took him to the doctors and they kept telling me if was the flu, when I said that he had all the symptoms of Leukemia the doctor lifted up his shirt and said there wasn't a bruise on him, I was just a paranoid mother.

After 2 weeks, at about our 16th doctor visit, they were pretty fed up with me and his PCP said there was nothing wrong with him. He washed his hands and was about to leave the room and I blocked the door. I told him I knew there was something wrong with John. The PCP finally did a finger pinch to check his red count and came back in and told me to take John straight to the hospital. I asked why and he said his red count was 4. I knew at that moment that he did have Leukemia.

John had been in t-ball since he was 3, and in Scouts since 5. On May 3rd 2002, he became a tiger scout. On May 4th, he played his first game as a little league player. On May 6th, when he should have been singing at his spring musical, but he was in the ER getting 3 transfusions. I will never forget what he said - first, "I can't believe this is happening to me" and then "God please save a lot of souls through this pain". John's heart was enlarged and his organs were failing. Had I put him to bed that night he would have gone to Heaven in his sleep.

On May 8th, his sister Joan's 12th birthday, John was officially diagnosed with Acute Lymphoblastic Leukemia. He was given a 70% chance of long term survival because he was diagnosed so late. He was homebound tutored through the second grade to give him a better chance of survival.

In March of 2003, John finished his roughest 10 months of chemo and I got him a new oncologist, John also got his long awaited and faithful companion - a collie puppy named Shadow. John entered the maintenance of his protocol which ended on July 2nd, 2005. Between all of John's maintenance and after treatment ended, he had a rough time.

John survived full blown chicken pox 4 times, John survived 5 staph infections, after the 5th one, his port was removed and he finished the last 4 months of treatment without one. John was hospitalized over 40 times and owes his life to God's grace and IVIG infusions, we had what we thought was a clever motto - Chemo takes a dive in 2005.

John was diagnosed with chemo related migraines in 2006. At this point John never went more then 3 months without seeing his oncologist because he continued being sickly. John was tested for AIDS which was negative. In May of 2007 John was declared an official 5 year survivor.

Sadly, divers come up for air, and John cancer returned 1,000 times worse than before, in November 2007- all in his brain. Johns white count was 1,800 in his spine and 80% through his brain - it was a miracle he was alive - but his condition never improved.

In July of 2008, I transferred John to the #1 hospital in the country and signed for drugs from Europe that would either kill him or cure him - well they almost killed him but they cured him, John's last MRI showed there is not one cell of cancer in his brain. At this point John has 4 more inpatient hospital stays and 3 more months of harsh chemo. Then 3 weeks of radiation. In January 2009, John will begin maintenance and in January of 2010, John's treatment will end.

Over and over God has shown His great mercy.

(Story and Interests were last updated October, 2008)