Albany girl, Hannah Cate, battling Down Syndrome and leukemia

Sept. 16--ALBANY -- Childhood cancer is traumatic for the child and family to deal with. When the child has Down Syndrome as well, coping is even harder.

For the Collins family, however, that is something they bravely face every day.

Hannah Cate Collins, 11, was born with Down Syndrome. Aside from undergoing heart surgery as an infant, the fifth of six children led a relatively healthy life until she was 4 years old.

"At four 1/2, she started getting sick all of a sudden," her mother, Keleigh Collins, said. "She had her tonsils out, and right after that, we found out she had leukemia. All of her counts were down, and she had a fever."

In November 2007, Hannah was taken to Children's Healthcare of Atlanta at Egleston. She was diagnosed with a rare form of leukemia, so it took a while to figure out how to treat it. By 2010, she had been off treatment for a couple of years.

In April 2013, she relapsed. Seeing her in that condition saddened even some of the health care workers who were helping her.

"She presented with double pneumonia over spring break," her mother said. "Nobody in the family suspected we would be back in this world."

Circumstances forced doctors to seek a different treatment path. All of Hannah's counts were off, and she had to be intubated.

"It was very traumatic," Collins said. "Because of the pneumonia, she was super weak."

The Down Syndrome made a bone marrow transplant an unrealistic option. Her health care team combed the nation and found a suitable treatment path for her that called for Hannah and her mother to be in Atlanta every week for two years.

The lifestyle of constantly commuting between Atlanta and Albany has brought with it fatigue, stress and a mother whose attention has had to primarily focus on one child. Collins has had to do a lot of the commuting because her husband, Craig, has to work.

"I have six kids, and immediately it hit everybody like a freight train in the face," Collins said. "It is hard on the kid, but horrible on the siblings.

"Everybody's stuff matters. It's hard. She is the fifth of six children. I have another who is 8 years old, and all she ever known is that her sister is sick. Whether you want to, you have to keep doing what you are doing."

The effect of the constant stress and trauma on her other five children -- Grace, 18; John Craig, 17; Mack, 16; Joshua, 15, and Faith, 8 -- has been noticed.

"They don't want to say, 'What about me?'" Collins said, adding Hannah's siblings see their own concerns as trivial compared to their sister's. "But it's not trivial," Collin said. "The youngest has to be passed around, and she's tired of that.

"In every family I have ever met (affected by childhood cancer), everyone struggles for other kids also. It's not that they don't care; they do care. Childhood leukemia has one of the longest treatment paths. Once you are ready for it to be done, you fall back in it again."

As it stands now, her quality of life is delicate. A fever of 100.4, while not considered a huge threat to a healthy child, requires a trip to the emergency room -- and later to Atlanta -- for Hannah, prompting the family to take precautions so that she isn't exposed to anything. The chemotherapy has resulted in a cognitive fallout, which can have lasting effects. After she has done well in learning something, she can "lose" that knowledge later.

"It's hard to get a forward momentum on some things," Collins said.

Her condition has affected her ability to attend school. The family recently found a tutor who is coming in twice a week, with the cost being picked up through a grant the family recently got from Jay's Hope in Macon. The Collinses have a support system of friends in Atlanta and Albany who will bring by a meal, which can help in circumstances often it is difficult to find the time to prepare a meal.

"We had a lot of support during the first cancer," Collins said. "The kids were younger, so we needed a lot of hands and feet. Now the kids are driving.

"There is a busy factor (involved with the support system). The need goes on ... and (we are) going to wear someone out."

Fundraisers have been held before for her in Atlanta and in Lee County. A swing set was built for her with the help of Team Summer earlier this year and the family got a double bicycle for Christmas. While grateful for the help they have received, the need for assistance remains constant.

For the parents to participate more in the lives of Hannah's siblings, a babysitter is necessary. From a family budget standpoint, however, the cost is prohibitive.

"When we have to travel to Atlanta every week, eat and put gas in the car ... it affects a lot of stuff," Collins said.

What could potentially be helpful, Collins said, is company on the trip to and from Atlanta so it is easier to attend to Hannah en route. She has had someone go with her in the past, but it ended up being a stressful situation for them.

"It would have to be the right personality," she said.

Assistance from Blue Skies bought the family a beach vacation this past summer, which is a service the organization does for families with children who have cancer.

"Everybody gets everything that you are doing," Collins said. "You don't have to feel like you are too much and everyone gets it.

"There are bright spots along the path."

When asked how the experience has changed her, Collins said that it has made her more compassionate toward others -- and compassion has gone a long way in helping the Collinses.

"I was telling a friend in Atlanta that kindness goes a long way," Collins said. "Folks have been kind. It has gone a long way and we couldn't make it without that. It's not the big things but the little things. My kids remember them.

"We are not hopeless in this situation. I don't believe God threw this one on our heads and smacked us with cancer twice ... we can take this and make a miracle."

Collins also took the forum as an opportunity to advocate for the awareness of childhood cancer by referring to the ongoing ALS Ice Bucket Challenge.

"(The funding) for childhood cancer research is so low, (but there are) so many kids that are impacted," she said. "September is 'Go Gold for Childhood Cancer.' I'd like for there to be an increase in awareness and more focus, and I've been thinking: 'What challenge could I put forth?'

"The kids (with cancer) still need to be kids, and do what a typical child is longing to do."

Collins said that of all the children she has met who had cancer, "I've not met one who is bitter or angry."

More on Hannah's story and how people can help can be found at www.caringbridge.org/visit/hannahcatecollins or on Facebook at www.facebook.com/hannahcatecollins

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