Jakob's Story

In December of 2000, our son Jakob was a typical two year old; running, playing and making a mess. When he started complaining of a tummy ache and backache, we just thought he had played too hard. It was after he collapsed, grasping his back and crying from the pain that they realized this was no typical illness.

After the initial visit to the doctor, tests revealed nothing. Over the next six weeks Jakob’s pain escalated each day. It was only after waking with a fever of 103°F, Jakob’s pediatrician sent him to Children’s Mercy Hospital for tests. The preliminary tests revealed Jakob had either contracted a virus imitating Leukemia, or he truly had Leukemia. We waited in anticipation over the next two days as the doctors stabilized his blood by giving him several bags of blood and blood products. Upon stabilization, the doctors would be able to confirm their diagnosis with further and more serious tests.

On Jakob’s third birthday, we received overwhelming news— his test proved positive for Leukemia. That evening the doctors reported Jakob had Acute Lymphoblastic Leukemia. At that moment Jakob’s life changed --he had chemotherapy treatments daily for three and a half years, endured many side effects and complications along the way.  He will be checked constantly for the next five years before doctors considered him cured. We witnessed changes in their child no human should have to endure.

Presently, Jakob is still suffering from the many side effects of the chemo.  Jakob was diagnosed with Celia disease in 2003 (which is where the hairs in your lungs and sinuses can't filter out anything you breath in so you have constant bronchitis, pneumonia and sinus infections).  To date there isn't a month goes by that he isn't sick with something.  He diagnosed with Reflex Sympathetic Dystrophy in October of 2006.  His body could not handle any more stress and the Central Nervous System freaked out and now fires off pain signals for no reason.  It affects him from the hips down, his right arm and hand.  There are days when the pain is so bad he can't walk or put clothes on.  The pain intensifies during stressful times for him (i.e. changes, school, not enough sleep, when he is sick or the weather is cold or wet).  He is perceived by most as a typical child—To look at him you wouldn’t know he had Leukemia, Dysgraphia, Reflex Sympathetic Dystrophy or Celia Disease. However, when he is sick, his illnesses go beyond the typical childhood colds and viruses. He is not able to just be a kid and this is a difficult concept for a any child to comprehend.

Jakob is a trooper. It is his strength, determination, and courage that keeps me and the rest of our family going. Jakob’s determination and God’s inspiration was the founding of Beads of Hope® in 2002. I wanted to inform people about how common childhood cancer has become while raising money for Childhood Cancer Research.

I love designing and creating jewelry, my dream of making a difference would be realized… one bead at a time.

Staci Tubbs