It all started on Christmas of 2010. Our son, Ross was 2 1/2 years old, and we fully expected to have the best Christmas
morning ever. We brought him downstairs that morning with gifts loaded around the Christmas tree and he hardly cracked a smile.
He just wasn't feeling right. He perked up a little throughout the day, but we felt like maybe he was coming down with something, or
possibly still not old enough to truly understand Christmas. Later that night around 11pm we heard him crying in bed, and nothing
could calm him down. He was complaining of his legs hurting. After some children's Tylenol and a couple of hours of continued
crying, we took him to Children's Mercy Hospital. They said it was constipation, so we took him home and put him on laxatives.
About 12 hours later he could no longer walk. At that point we brought him back to the hospital and blood tests were done and the
warning signs for childhood leukemia were all there. The doctor notified us at that visit that we needed to admit him to the oncology
floor at the downtown CMH location.
Ross was admitted to Children's Mercy Hospital Oncology floor on 12/27/2010. After admission, through a bone marrow test and
further blood tests, they diagnosed him with Acute Mylogenous Luekemia (AML). We were also informed that there were several
sub-types of AML, of which Ross had the M7 sub-type. This type of leukemia is pretty rare, especially in children that do not
have Down Syndrome. History has shown that patients with AML-M7 have about a 50/50 chance at survival. There are many
different factors within a diagnosis that will increase chances of survival, as well as decrease. One factor that increases that chance
of survival is if the patient has Down Syndrome. They tested Ross for DS, and as crazy as it sounds I was praying that he had it.
Nearly 8 out of 10 down syndrome kids beat this disease, whereas it was much less for kids without DS. They had to test because
the treatment plan would have been different if he had the downs gene. Unfortunately in this situation our son did not test positive for
The treatment plan was laid out to us a few days after he was admitted. Ross was scheduled for 3 rounds of chemotherapy. Each
round of chemotherapy was going to require a 4-6 week stay in the hospital, with about 1 week at home in between each treatment.
After each round, Ross would have a bone marrow test to see how much cancer was still present in his bone marrow. When he was
diagnosed, the test showed that 90% of the blood cells in his bone marrow were cancerous, so we just wanted to see that number go
down. Depending on the results of each round of chemo, it would later be determined whether Ross needed to undergo a bone marrow
transplant. After the first round of chemo, the test showed 10% of cancerous cells. After the second round it was less than 5%.
After the third round it was less that 3%. Technically, they consider less than 5% remission, but with this diagnosis, the cancer is
very aggressive and persistent.
They said that Ross was definitely a candidate for a bone marrow transplant. So near the end of May in 2010, Ross underwent a bone
marrow transplant. We knew that a transplant was going to be a tough road, but Ross did fantastic with the 3 rounds of chemo and, with
our positive spirits and dedication to beating this disease, we were certain that we could get him through this final treatment. When doing
a bone marrow transplant, the patient has to take medication that will kill all of the existing bone marrow, and then the donor marrow is
infused by an I.V. When your marrow is killed off, it leaves the patient extremely vulnerable to infection and illness.
Ross did really well for the first few weeks. We even had a going home party for him as he was deemed far enough into recovery that
we could leave the hospital. We were home for 1 day, and then back in the hospital due to Ross's uncontrollable pain. He would just
cry and tell us that it hurt. So he was back in the hospital for a week and then we came home again, this time for only a couple of days
before we were back in the hospital.
We came to find out that Ross was suffering from host versus graft disease. Basically, his body was rejecting the donor bone marrow.
The donor marrow was a perfect match to his, so we didn't understand how this could have happened, but it did. Odds were HEAVILY
in Ross's favor that this donor match would be successful, but it wasn't. To this day I can't let myself think about the pain that Ross went
through as his body slowly began to shut down. He would scream uncontrollably in pain slamming his fist on his stomach yelling about
had bad it hurt. He screamed in pain for hours and hours. Overnight we were lucky for him to sleep 5 or 10 minutes straight before
waking up screaming in pain for another hour. There was absolutely nothing we could do. And even in the midst of all of this, he would
still manage to thank the nurses after they drew his blood for testing, or the cleaning crew for emptying the trash and mopping the floor.
Ross passed away in my and my wife’s arms on September 1st of 2011. An infection in his lungs was too much for his little body to
overcome due to his weakened immune system from the bone marrow transplant. Ross was a gift, and we will forever cherish the short
amount of time that he was with us.