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Alex's Lemonade Stand Foundation Blog

This Nurses Week Jay Scott, Alex's dad, honors the hospice nurse they needed.

Alex Scott, with her brother Joey. 

Nurses play a critical role in the life of a family affected by childhood cancer. They are medical caregivers—overseeing medication schedules, post-surgery care and coordinating therapy appointments. They help manage pain and treatment side effects. They also provide emotional support to families—supporting parents, affected children and siblings when life is at its most uncertain. 

Hospice and palliative care nurses specialize in end of life care; navigating parents through uncertain and emotional territory. These nurses are the nurses so many families need, but don’t want. 

Jay Scott, Alex Scott’s dad and ALSF co-executive director, shares the story of one of Alex’s nurses, Nurse Gail, and her impact on the Scott family. 

During my daughter Alex’s treatment for neuroblastoma, we had so many wonderful experiences with nurses that helped her, as well as our family, cope throughout the treatments. In honor of National Nurses Week, I want to shed light on the critical care provided by hospice and palliative nurses.

Two days before Alex passed away, the cancer had taken over her body and she became non-responsive to almost everything. The team at the children’s hospital—where she could be found at least two days a week for check-ups and blood transfusions—suggested we meet with a hospice nurse the next day at our home. My wife Liz and I had little interest in meeting with this person, but we reluctantly made the appointment. In our minds, what could this nurse tell us? We had been the ones taking care of Alex during her 7 ½ year battle with cancer.

The next day, a Saturday, Gail came to our house. A huge package of medications had been delivered that morning. Together, we went over each of the medications one by one. Alex was dying and the medications were to help us manage various symptoms associated with a cancer death. This included things like the obvious pain medications, but also various patches and medications to help with nausea and dizziness. Once Gail was comfortable that we were up to speed she got ready to leave and asked what time she should come the next day. We told her that she didn’t need to come back. She told us she would see us the next morning. We assured her that she didn’t need to bother, we were all set.

It was a difficult Saturday night. Alex was sick to her stomach off and on. She was extremely restless as the three of us tried to get through the night. There were horrible thunderstorms that night. So bad in fact that water came in through the roof in Alex’s room—something that had never happened before. At one point Liz and I sat up startled during the storm because of loud thunder and extremely bright lightning. At that very moment, Alex sat up as well, looked at us and said, “What are you guys doing in my room?” That was the first coherent thing she said all day and the last thing she said to us with her eyes open. It was a very long night.

The next morning, we moved Alex downstairs to the couch, one of her favorite spots. Later, we heard a knock on the door. That darn hospice nurse was back! Gail first asked how Alex was doing. We told her that her breathing was labored and shallow all night.

At some point, Gail asked us to come into the kitchen. She was then brutally honest with us. Brutally honest, but in a loving and caring way. She said, “We all know that Alex is dying. You told me that you told her it was ok and that she would be ok.” She went on to give us a lecture, a lecture that we will never forget.

“When was the last time you ate anything?” she asked. “Alex can tell what is going on even if her eyes are closed. If she thinks that you guys cannot take care of yourselves, then she is not going to let go. You both need to go upstairs and take showers and change your clothes. Then come down and eat breakfast. Then, Alex will know that you will be okay without her.”

Liz and I did as she said. Of course, we did it one at a time because we needed one of us by Alex’s side. We whispered to her that we had eaten and taken showers (I am guessing she could tell we had showered because we smelled better). A calmness came over Alex and she let out a big sigh of relief. Shortly after that, she drifted off to her final sleep.

At the time the nurse was telling us what to do, we may have resented her a bit. But it didn’t take long for us to appreciate what Gail did for us and Alex. Our gratitude is endless for Nurse Gail for being so right and changing our lives.

Thank you to nurses everywhere for your dedication and the critical and valuable role you play in supporting families going through difficult times.

 

 

 

 

Alex’s Lemonade Stand Foundation’s Nurse Researcher Grants Program is designed to improve the quality of life for young cancer patients and their families. ALSF added the Nurse Researcher Grant program to an already successful and innovative pediatric research grant program in 2007. We recognize the importance of investing in research that enables nurses to find better ways to care for children undergoing cancer treatment. Meet some of our nurse researchers here.

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Alex Scott

 


Guest post by Chelsea Keeler, LSW, leukemia & lymphoma social worker, Children’s Hospital of Philadelphia

Learning that someone in your community now has a child with cancer can leave you feeling helpless or uncertain. You want to help but don’t know how. 

You can support the family in a number of ways—providing concrete resources such as food, helping with sibling needs or household tasks, and providing critical emotional support. Below, consider some dos and don’ts that have made a difference for other families in these shoes:

DO reach out to offer help now and often.

A new cancer diagnosis is overwhelming and scary, and no family should feel as if they’re going through it alone. Often there is an outpouring of love, support and offers of assistance in the very beginning and families might say they don’t need anything. However, this is a time when families cannot process or imagine what they’re going to need. 

So, keep reaching out. Someone new to this may not realize that they’re going to need someone to mow the lawn on day one, but by the third month of treatment, they start to realize that these household tasks are falling behind. 

One suggestion: set up a Google calendar (with the link, it can be accessible to anyone in your network!) and write various household tasks on relevant days: taking out the trash, doing laundry, watering flowers, mowing the lawn, walking the dog–and then organize your network into signing up for tasks throughout the months of treatment. 

DON’T automatically send a lasagna (or meals in general) without asking.

Yes, people need to eat. For the first number of days after a cancer diagnosis, however, there’s a strong possibility that no one is even home to eat this food you mindfully prepared. And throwing out rotten, homemade food adds emotional stress and time and energy in an already heavy situation. Freezers only have room for so many lasagnas. 

Food can be overwhelmingly helpful, though, once families are settled into the treatment routine and spending entire days at appointments or in therapy. Ask your loved one what days they need meals during the week–you can make a sign up online and people can pre-arrange to deliver food for those days. 

You can also consider arranging for online grocery delivery of staples and snacks, so the family always has something to grab in a pinch. 

DO offer to help with siblings–their lives have been turned upside down.

No childhood cancer parent feels like they’re being a 100-percent good parent to all of their kids. Treatment can be so demanding that siblings lose normalcy in almost every aspect of their lives. They’re not seeing their sick sibling or their parents as often and they worry that they may lose their sibling or their parents, they even worry that they may also become ill. 

Sibling care may be handled in the immediate aftermath of a diagnosis while parents are in the hospital, but sibling needs continue throughout the entire treatment journey. Offer to drive them to or from their hobbies, sports or activities, because that may be the only way they get to do them. If you’re taking your kids to the zoo for the afternoon, offer to bring a sibling along. Encourage your children to stay connected to their sibling friends or relatives. 

DO remember that this is a long journey, and sometimes there is no silver lining.

Cancer treatment is long, and it can be hard to find the right words to say to a loved one in such a difficult time. Sometimes there are no words that make it better and parents are simply looking for someone who will listen. 

For some, there is no silver lining and parents aren’t looking for a “fix” – they’re looking for open ears and a caring heart. Reaching out to say the truth (“this is so difficult and unfair”) can be so much more helpful than saying impersonal motivational phrases (“but this will make you stronger!” or “this happened for a reason”). Sometimes, parents want to talk about what is going on with their child in their treatment, and sometimes they’d rather talk about literally anything else. Ask them what they need. Ask them how you can help. Ask if you can come over with coffee to give them a break. And most importantly, keep asking.  

Chelsea Keeler is an oncology social worker in Philadelphia, PA. She completed her Master of Social Work from the University of Pennsylvania and has been working with children with blood cancers for three years. When she is not meeting families at the hospital, you’ll find her at the beach or taking her Siberian Husky, Tala, for hikes along the Wissahickon.

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Guest Blogger

Zach (pictured above, at age 10) battled a hard-to-treat type of lymphoma.

by Trish Adkins

Childhood lymphoma arises from the immune system cells and occurs when those cells grow in an uncontrolled and uncoordinated way. While it shares some similarities with leukemia, lymphoma often settles in the lymph nodes of the body, instead of in the bloodstream.

Each type of lymphoma is named by its cell of origin and this dictates treatment protocol. The good news: the most common types of lymphoma (Hodgkin, Non-Hodgkin, Burkitt) have relatively high cure rates as compared to other types of childhood cancer.  

The bad news: cure rates are not 100-percent and even those children who are cured of primary lymphoma can face a lifetime of side effects including cardiac dysfunction and even secondary cancers. 

But, there is hope on the horizon. Alex’s Lemonade Stand Foundation (ALSF) funded researchers so they could continue to search for safer treatments and cures for children battling lymphoma. Meet some of these childhood cancer heroes and the researchers making a difference every day:

Miracle Cure: Zach

When Zach was 5 years old, he was diagnosed with anaplastic large cell lymphoma (ALCL), an extremely rare type of non-Hodgkin lymphoma. While still in treatment, Zach’s lymphoma relapsed. As Zach became sicker and his prognosis worsened, his parents felt they were out of options. Traditional chemotherapy was not working and, in fact, was making Zach sicker. Zach was running out of time. 

Zach’s lymphoma tested positive for ALK, an abnormal gene that fuels certain types of cancer. ALSF-funded research made a clinical trial for a new drug possible, bringing hope to his family. This drug, known as crizotinib, targets and turns off the ALK gene. Days after taking the drug, Zach was feeling better and his cancer was disappearing. 

Now Zach is 12 years old and cancer-free. 

Breakthrough Research: Dr. Yael Mosse, Children’s Hospital of Philadelphia 

Funded by an ALSF Reach grant, Dr. Yael Mosse led the research team at Children’s Hospital of Philadelphia that made Zach’s treatment possible. Her team theorized that since crizotinib worked in ALK-positive lung cancer in adults, it could be the hope children battling ALK-positive cancer needed. 

And since crizotinib is a targeted therapy that just attacks one gene, it has fewer side effects as compared to chemotherapy. 

Dr. Mosse’s clinical trial enrolled 30 children--including Zach. Zach was seven out of the eight children with the same type of lymphoma that received the same miraculous cure. The trial also tested crizotinib in children battling ALK-positive neuroblastoma with successful results. 

Hero (and Boss Lady) Sydnie 

The day Sydnie, age 13, was diagnosed with Hodgkin lymphoma she cried for a moment and then decided no one else was allowed to cry in front of her.

Then, Sydnie asked her mom to dye her blonde hair purple, pink and blue—because she knew she was going to lose it anyway. When she lost her hair as a result of chemotherapy, she wanted to shave her head right away because, as Sydnie, declared, cancer was not going to determine if she was bald or not. It was up to her.

“I won’t let cancer be the boss of me,” Sydnie said. 

Hodgkin lymphoma has a relatively high cure rate (80-90% in most cases) but requires immediate chemotherapy and radiation. Sydnie endured nine months of chemotherapy and 10 days of radiation. 

Today, she is cancer-free.
 
Translating Research into Treatments: Dr. Helen Heslop, Baylor College of Medicine 

Dr. Helen Heslop, a researcher at Baylor College of Medicine (an ALSF Center of Excellence) and Texas Children's Hospital focuses her work on translational research, which combines testing in the lab with patient studies. This type of research can help accelerate new therapies to clinical trials and someday, as new standards of care. Of particular interest to Dr. Heslop is how immunotherapy treatments, like CAR T cell immunotherapy, could help children with hard-to-treat lymphoma and also lead to safer frontline treatments. 
 
“The grants that ALSF provides support early career research, innovative, high-risk ideas and early phase trials that are critical for clinicians and scientists as they test approaches to improve outcomes,” said Dr. Heslop. 
 
Learn about lymphoma research and meet more childhood cancer heroes, here

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