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A familys journey with leukemia

by: SUBMITTED PHOTO - Ben Hartley, 5When the midwife told Jim and Deborah Hartley about an hour after their son Ben was born that he had some characteristics that could mean he had Down syndrome, his mother’s heart dropped.

“I had waited so long to have a child and prayed so hard that I would have this perfect little baby boy,” she said. “It did not take me more than a quiet moment to hold Ben to see my prayer was answered. We found out a week later that Ben did indeed have Down syndrome.”

That was on March 9, 2009.

Hartley said the first year was difficult watching other babies pass Ben by on milestones. “After that we began to rejoice in small things that other parents might not notice,” she said. “Ben was teaching us so much about life and all the little miracles that don't always get noticed.

“We cannot imagine what life would be like without Ben. He seems to connect so naturally with everyone he meets. He is always living in the moment, this is a lesson that I am always in awe about.”

Now Ben and his parents face a new challenge.

The spunky little five-year-old was diagnosed with leukemia on Sept. 6. The Sunday before Ben woke up with red marks on his legs, later that night his mother noticed a blood vessel had burst in his eye. Ben's doctor was very concerned about the marks on Ben's legs and sent him to get blood work.

“He called us that night to bring Ben up to Doernbecher right away,” she said. “They told us within the first half hour that Ben most likely had leukemia. Once again my heart dropped.”

The family is in the beginning of their journey with cancer. Ben is going to be hospitalized for 29 days for chemotherapy. He needs to stay longer because Down have had a difficult time staying healthy after going home within a week. The treatment for a Down syndrome child is a bit different than a typical child. If everything goes well, Ben will be coming home for four months. In the four months Ben will have to be hospitalized four different times for around four days each. In the sixth month he will hospitalized again for 29 days. The next two years after that Ben will be in what they call the maintenance phase.

“My family has only been in this new chapter of our life for two weeks,” she said. “It has amazed us the support we have received from our family, friends, work, and our community. I am so thankful to everyone, I wish there was a way that I could express the gratitude I have, there is really no words. We have a lot to figure out, both my husband and I work. I am taken time off but we still have not figured out how this all will work. Ben has a long road ahead of him, he needs to be in a healthy environment so he has the strength to fight this cancer.

“Ben is a strong amazing boy. I truly believe he will beat this. Foreseeing how we get there is another story.”

Friends in the community will soon be setting up a fund for Ben, with an account at a local bank.




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