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Benefit planned to help Dosch family with transplant and brain tumor expenses

Posted: Monday, Oct 1st, 2012

Three-year-old Drake Dosch, center, is shown with his family — from left, his sister, Sierra, his parents, Kelsie and Jeremy Dosch, and his brother, Christian. His grandparents are Mike and Bonnie Dosch of Wolsey. A benefit is planned Oct. 7 from 12:30 to 2 p.m. at First Assembly of God Church, 920 Lincoln Ave. S.W. Drake was born in 2009 with a birth defect that required an intestinal transplant, and later developed a brain tumor related to the anti-rejection medications. PHOTO CONTRIBUTED

A lunch benefit and silent auction for 3-year-old Drake Dosch is planned from 12:30 p.m. to 2 p.m. Oct. 7 at First Assembly of God Church, 920 Lincoln Ave. S.W.

Drake is the son of Jeremy and Kelsie Drake of Columbia (near Aberdeen), and the grandson of Mike and Bonnie Dosch of Wolsey. He has two siblings, a sister, Sierra, and a brother, Christian.

The benefit will help defray expenses from extensive medical treatment for several years for a birth defect, followed by the development of a brain tumor.

The meal will feature barbecues, sides and desserts. Silent auction items have been received from Celebrating Home, Sunbird Inc., “31”, Norwex, Silpada, Scentsy, Pampered Chef and more.

Contact Gini Appel at 350-9905 if you would like to donate food.

Drake was born May 21, 2009, but in the late stages of pregnancy doctors discovered that he would be born with a birth defect, gastroschisis, in which an infant’s intestines stick out of the body through a defect on one side of the umbilical cord.

Following complications at birth, the medical staff decided it was necessary to remove his small and large intestines. Within a few months, Drake was evaluated and later accepted as a recipient for an intestinal transplant.

While awaiting a transplant, Drake remained hospitalized at Sanford Hospital NICU in Sioux Falls. His first year was quite challenging and difficult, since his body was constantly adjusting to a life without intestines.

In June 2010, Drake was able to leave the hospital and live in an apartment with his dad in Sioux Falls to be near medical assistance. The rest of the family traveled to Sioux Falls so they could all be together whenever they could.

Initially, the baby was accepted as a transplant recipient at the University of Pittsburgh Children’s Hospital.

“Even though Drake was a transplant recipient on one list, we knew it was of value to be accepted on more than one list to increase the chances of finding a matching donor,” his mother, Kelsie, said.

On May 11, 2011, the family met with the medical staff at Amplatz Children’s Hospital at the University of Minnesota, and they agreed to accept Drake on their transplant list.

“Since no other hospitals in that region perform intestinal transplants, we were extremely thrilled to know Drake would be the only person on that region’s list eligible to receive an intestinal transplant,” Kelsie said.

“On July 4, 2011, we received ‘the call’ every parent hopes to receive when their child is on a transplant waiting list — a donor match was found,” Kelsie said.

This meant Drake was going to receive his much needed transplant. The long wait was finally over.

Following the successful transplant surgery, Drake remained in the hospital for a month for close follow-up.

“This was a very exciting time for us all since it was the first time Drake was able to receive feeds through his stomach,” Kelsie said. She said Drake remained with his father in Minneapolis for three months for more follow-up care.

Although the transplant was successful, Drake continues to be on several daily medications, including a number of daily IV fluids and medications. Despite all of this, Drake was handling it quite well, Kelsie said.

Drake was released from the Amplatz Children’s Hospital in September 2011 and returned home to be with his family in Columbia.

“Drake did very well at home after his transplant,” Kelsie said. “He got stronger every day and was able to discontinue several of his medications. Most importantly, he was able to get to know his brother and sister a lot more, and even explore outside in his favorite red wagon.”

But, within months, Kelsie and Jeremy began to notice subtle changes in their younger son.

“Drake started to get very tired and run down,” Kelsie said. “His condition progressed slowly, getting a little worse every day.”

They noticed his energy level dropping in February 2012, and visits to several doctors over the next few months did little to pinpoint what was causing it.

On April 9, a CT scan revealed a lymphatic brain tumor. The tumor was roughly the size of a baseball that invaded his sinuses, upper palate, left tonsil and lymph nodes.

“Drake’s diagnosis was called post-transplant lymphoproliferative disorder (PTLD), and occurs in patients who have decreased immune function — specifically in individuals who receive transplants and who are on anti-rejection drugs,” Kelsie said. “The higher the doses of these drugs and the longer they are given, the greater the susceptibility to PTLD.

“This is one of the reasons that we are always in a dilemma about how much immunosuppressive medication to give — too much and you get infection or PTLD, and too little and you get rejection.”

Immediately after discovering the tumor, Drake began an aggressive chemotherapy treatment for his tumor at the University of Minnesota. After two months, he was able to return to Sioux Falls for out-patient treatment. Drake and his parents were able to stay together at the Ronald McDonald House.

After a final CT scan showed all of the lymphoma was gone, Drake was allowed to go home on Aug. 21.

“Since then Drake has been doing really well at home,” Kelsie said.

They travel to Aberdeen twice a week where he has labs taken, and goes to Sioux Falls for infusions and other treatments twice a month.

Drake continues to be on four IV medications, 12 hour IV fluids, and 32 doses of oral medications, all given daily.

“Despite these major life events, Drake remains the happiest boy you will ever meet,” Kelsie said. “He is always laughing, playing with his favorite toys, and he loves going outside.”

Drake was one of only 129 people in the United States to receive an intestinal transplant in 2011. Of that, only 5 to 20 percent of recipients develop PTLD.

“We are so proud of the strength and courage he has shown while battling through these trials,” Kelsie said. “We know Drake will continue to fight on and succeed in life.

“We are so humbled and grateful to all of our family and friends for all of their prayers and support,” she added.

For the complete article see the 09-29-2012 issue.

Click here to purchase an electronic version of the 09-29-2012 paper.

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