Organization providing help for pediatric cancer patients facing additional challenges as result of COVID-19

Thomas Lott |   Updated 

 

COVID-19 is making the already devastating prognosis of pediatric cancer even more challenging across the Carolinas.

The novel coronavirus doesn’t care how old someone is or where he or she stands socioeconomically. It can infect anyone and wreak havoc on their lives, whether with serious symptoms or even the lack of them, which makes it easier to spread.

It also doesn’t care about pediatric cancer. In fact, it even favors it, as research continues to show those who are immunosuppressed are more susceptible to the negative effects of this virus.

Cancer was already the No. 1 disease killer of children in the world before the novel coronavirus, but now those affected by it are in even tougher spots.

Laura Allen is the executive director of Children’s Cancer Partners of the Carolinas, an organization that works to “provide comprehensive support and loving compassion to families whose children are battling cancer to improve their overall quality of life.”

Children’s Cancer Partners of the Carolinas is helping more than 1,100 individuals dealing with a form of pediatric cancer and COVID-19 is not making their mission easier.

“We contact a family within 24 hours of being referred to us … but now what we’re doing is we’re having to do our intakes or our meetings with these families by phone and that is less personal than the face-to-face meetings we would have with our families,” Allen said. “When you’re sitting with a mother who is teary eyed and telling you about her child’s cancer journey or just being able to share with somebody who understands what their family is going through, that face-to-face contact means a lot.”

Children and families who are dealing with pediatric cancer have been particularly impacted in other ways by COVID.

Because of the limits on the number of people who can come into hospitals due to COVID-19 concerns, oftentimes entire families cannot be there when procedures are being done.

There are 10 cancer treatment facilities in South Carolina and

North Carolina combined, according to Allen, and some of these families have to travel two to three hours just for a single procedure.

Not being able to bring an entire family makes making those trips harder, especially if the child lives in a single-parent household. The economic impact creates burdens as well.

According to the organization’s website, one in three families are unable to meet basic needs because of a pediatric cancer diagnosis. Many of them need help and the organization tries to provide it, and that’s even before the added challenge of COVID.

One North Carolina mother had a child who was less than a year old who was diagnosed with Retinoblastoma. She had to travel to one of the larger facilities in the state for treatment and was then told she had to go to Memorial Sloan Kettering Cancer Center in New York for a clinical trial.

“This mom said, ‘I don’t know how I’m going to get there. I don’t have income, I don’t have a job, I don’t know what to do,’ and she was told to just get on a bus and to show up and that they would take her,” Allen said.

This isn’t a unique situation as there are unknowns for every child diagnosed with cancer and families have to make plans for things they never intended to. No one intends to budget for childhood cancer, Allen said, and it’s not something anyone is ever prepared for.

Fortunately for this mother, Allen and her team — which is a small group of eight people — were there to help.

“She called us crying that Friday and she said, ‘What am I to do?’ and we said, ‘Don’t you worry,’” Allen said. “We walked her through how to navigate flying, how to navigate TSA, how to navigate getting a taxi on the other end in New York and we worked with a social worker in New York to get her housing at The Ronald McDonald House.”

That began her journey that has taken her to New York more than 20 times in the last two years. In that time the little girl lost vision in one eye and still has cancer remaining in her other one. Her mother has had to go through several jobs because of the need to go up to New York once a month for two years.

But she has been able to maintain employment with the help of Children’s Cancer Partners of the Carolinas which is coming up on 20 years of operation.

“She said to me at one point, ‘You gave me hope, you gave me reason,’” Allen said. “And to see that transformation to me was just a game changer, it keeps me fighting for these children.”

But COVID-19 has presented additional challenges beyond what these families normally face and the financial burden remains for them as it does for this organization.

Cabarrus County has been very giving during the time of COVID whether it was churches donating gift cards or food vouchers or volunteers and restaurants providing food to individuals in need, this community has been very selfless in this time of crisis which has seen more than 1,300 infections, greater than 30 deaths and countless others hit with unemployment.

Children’s Cancer Partners of the Carolinas can use help as well whether that be with monetary donations or simply providing for needs of these families who are not only dealing with cancer but also the additional threat of this virus.

Donations can be made at the organization’s website whether that be a one-time gift or a monthly one, there are ways to help. Allen joked she is always looking for that “million-dollar donation” that would solve all of these children’s needs, but they will readily accept whatever anyone can give.

Wearing a mask doesn’t hurt either. While there has been conflicting information on the effectiveness of masks over the course of this virus affecting the nation, current research shows it does help stop the spread of COVID-19.

For children and the families of those dealing with pediatric cancer, a mask could prevent a dangerous infection on top of an already devastating diagnosis.

“Please wear a mask,” Allen said. “Please respect your neighbor, be courteous to people.

“You wear a safety belt which is for your safety, wear a mask for your safety as well and for the safety of those around you and let’s not make these children even have a higher risk. Let’s just take care of each other.”

Allen longs for the day her organization is no longer needed as she hopes a cure is found and these children and families won’t have to face what they are facing now, but until that day comes, they are going to do all they can to help.

“We will be on the front lines ready and available to these families as their needs come,” she said. “This is just very important work.”

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