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Advice

Ask Ada: Should I Protect My Son From His Chronically Ill Best Friend?

This week, Ada helps a mother teach her son about illness in the face of a friend's cancer. Plus: advice on not feeling bad about your fitness lifestyle!

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Stop Feeling Jealous Of My Friends’ More Active Lifestyles?

Dear Ada,

I have been sadly triggered by feelings of exercise inadequacy. Eighty-year-old friends brag on their expensive far flung daily classes in faraway places.

I don’t drive but I walk with my cane now as far as I can daily. Carcinoid syndrome causes neuropathy and balance problems and all the dancing and yoga poses in the world cannot bring me peace this year.

What does is still doing housework, walking to local thrift stores and perambulating to shop with my husband in all the long corridors of all our local malls. Love the trees and kids with boundless energy. Thanks for letting me share.

Carolyn

Carolyn,

What you’re experiencing is something that people of all ages go through — the comparison trap. The people in your life boast about their experiences, and you hold these stories like a mirror to your own. Know that there’s no one “right” way to move your body, so long as you move it. Their fancy yoga and dancing classes aren’t any better than your walking and light activity.

While you may feel inadequate on occasion, I want to point out how positive your overall attitude is. You know your limitations, and yet you’ve found activities to keep you active without pushing yourself into pain or discomfort. And not only are you getting out there and getting exercise, but you’re noticing and cherishing all the joy around you — all while spending quality time with the people you love the most. This is something to celebrate.

Know that there’s no one “right” way to move your body, so long as you move it. Their fancy yoga and dancing classes aren’t any better than your walking and light activity.

Your friends may have no clue that their stories are making you feel inadequate. The next time you catch yourself in this situation, invite them into your world instead. Start the conversation by saying, “I wish I were able to participate in dance classes like you do, but my Carcinoid syndrome causes neuropathy and balance problems for me. I spend my exercise time walking, and found the perfect thrift shop. Would you like to walk there with me one day for a little retail therapy?” I’ll bet they’ll be honored to receive the invitation.

One more thing. If you’re looking for ways to conquer these brief moments of feeling less-than, consider repeating affirmations to yourself. It doesn’t matter whether you write them yourself or borrow someone else’s words. You can memorize them or keep a few written ones nearby to read in the moments you need a pick me up. Affirm yourself while looking in a mirror for some extra effectiveness.

To get you started, here are a few affirmations from Louise Hay that are quick to repeat and simple to remember.

“My happy thoughts help create my healthy body.”

“I listen with love to my body’s messages.”

“My body appreciates how I take care of it.”

Remind yourself that you are perfect exactly as you are, and you’ll never have to live up to someone else’s experiences again.

Photo by Samantha Hurley from Burst

Should I Protect My Son From Watching His Friend Get Sick?

Dear Ada —

My son is eight, and one of his friends was just diagnosed with leukemia, and will have to start treatment in the New Year. My son doesn’t know this, but my sister (his aunt) died of leukemia when she was around the same age, which was extremely traumatizing to me as a little girl. Because of this, I want to distance my son from his friend, so he doesn’t have to go through the same kind of pain, but my friends say that’s selfish, and my husband thinks it would send the wrong message. What should I do? How do I protect my son from seeing his friend get sick… and possibly die?

From,

Sharon S.

Sharon,

It’s obvious that you’re a great mom who loves her son and wants to protect him from all the hardships of the world. That being said, your husband and friends are right. Sheltering your son from sickness and death isn’t a good idea. At some point in his life, he’s going to experience both with people that he loves, and it’s best for him to learn and prepare now while he has you to lean on.

Allowing your son to stay close to his friend with leukemia is good for many reasons. It teaches your child compassion and gives him the skills to learn how to support others in their times of need. It introduces both illness and death in a manner that you can control — as much as it’s possible to control these kinds of things — based on the amount of access he has to his friend.

Allowing your son to stay close to his friend with leukemia teaches your child compassion and gives him the skills to learn how to support others in their times of need.

It also benefits his friend, who will definitely lose touch with his social circle in a time he needs support the most. While you may be the only parent with a sibling who passed away from the same illness, you aren’t the only parent considering distancing your son from his friend — and that child certainly could use one now.

At eight years old, your son is developmentally able to understand the concept of death, and he’s likely been exposed to it in movies, video games, and television shows, even if he’s been fortunate to avoid it in his circle of family and friends. However, you don’t want his introduction to morbidity to be what pop culture teaches him. You have the opportunity to guide him, especially with your intimate experience of having gone through this and losing your sister at a young age.

While that moment in your life may have been traumatizing, my hope is that you’ll find some healing in being able to talk about it with your son. It will help him understand this experience better and also make him feel like he knows his aunt better.

While your sister’s death may have been traumatizing, my hope is that you’ll find some healing in being able to talk about it with your son.

One more thing to consider is that your son’s friend’s illness will naturally keep the children away from each other. The child will be immunocompromised or may feel too sick from treatment to take any visitors. Encourage your son to write letters to his friend. Send funny cards. Take pictures of all of the child’s favorite places and activities put the picture in a small scrapbook they can page through when they’re feeling homesick in the hospital. Oh, and when the child is feeling pretty good — spoil them by dropping by with his favorite treat.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Cancer

A Hopeful Lens

How this mom’s personal tragedy inspired a global photography project.

In December 2011, after Cynthia Dawson’s four-year-old daughter Ava started losing her balance, Ava was diagnosed with a terminal brain tumor called diffused intrinsic pontine glioma (DIPG). Ava’s only treatment options were experimental, so the family moved from Texas to Arizona so Ava could participate in a clinical trial.

A self-proclaimed hobbyist photographer, Dawson looked for a photographer in Phoenix who was willing do a pro bono photo shoot with Ava, documenting the girl’s kind spirit and love of pink for posterity. To her surprise and disappointment, Dawson came up empty.

Later, Ava’s tumor progressed and the family returned home to Texas, where Dawson knew a larger network of photographers. Ava had her photo shoot in 2012, one month before she died. At that point, Ava had already lost her ability to walk, so it came at a grave time for the family. “She didn’t understand what was happening to her body,” Dawson says.

Still, dressing up in a pink dress and a sparkly gold crown brought Ava joy. “At her session she was very happy and she was able to be herself and laugh and giggle,” Dawson says. “To have those memories of her being so joyful is something we always treasure. [Those photos] mean everything to us. It’s a physical reminder of her.”

Photo: The Gold Hope Project

The Gold Hope Project

Dawson called that photo shoot the first Gold Hope session. She saw a need for pro bono photography services to help other families dealing with pediatric cancer create memories and share their stories. “When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant,” Dawson says. “Being able to share their child’s journey is so therapeutic, to let the public know, ‘my child is not a statistic.’ I think a lot of the times people hear certain statistics and it’s easy to forget, it’s real people behind the numbers.”

When Ava was sick, I wanted people to know more about the things she was going through, what her diagnosis meant… My child is not a statistic.

To that end, Dawson co-founded the nonprofit organization Gold Hope Project, which achieved 501(c)3 nonprofit status in late 2014. The organization works with professional photographers all over the world (over 500 at last count) to photograph “fighters” (kids battling cancer), survivors, and their families. They also create remembrance photos for kids who’ve already passed. The organization then shares fighter stories on its blog to raise awareness about pediatric cancer. Dawson says proudly they completed their 500th fighter session this summer.

Photo: The Gold Hope Project

Destigmatizing Illness Through Photography

Erin Wilkos’s son Nate is one of those fighters. About a year after Nate was diagnosed with acute Lymphoblastic Leukemia, Wilkos saw a Facebook post about the Gold Hope Project and applied for a session. “We weren’t sure if Nate was going to make it or not,” Wilkos says. “He almost passed away a few times. We figured a professionally done photo, even if it was the last memory of him, would be something we could cherish.”

Fortunately, it wasn’t the last memory for this Connecticut family. “Nate is 15 and is doing absolutely fabulous,” Wilkos says. “He is nine years off chemo and just joined the football team and is a junior firefighter.”

Nate and family still do cherish the photo shoot experience. “The photographer met with him and myself and my husband,” Wilkos says. “Nate was really into the army and liked owls, so she set up the most amazing backdrop and had an army uniform for him. He loved it!”

GPH gives families the option to order an album of images from their session, so Wilkos did. But their album got mixed up with another family. “Our book went to someplace near Alaska and we got someone else’s book,” Wilkos says. “In communicating with her, I discovered she had a farm that had snowy owls. We exchanged books and she sent along a bunch of photos of snowy owls for Nate. We check in every once in awhile.”

Photo: The Gold Hope Project

A Life-Changing Photo Shoot

Of course, the Gold Hope sessions don’t just benefit the fighters and their families. Some of the photographers who volunteer their time and expertise also find the experience cathartic. Having two kids of friends get diagnosed with acute lymphoblastic leukemia and another friend’s kid diagnosed with a rare blood disease “hit me in a way that I couldn’t put into words,” says Brittany Blake, a photographer in Orange County, California. “I knew that I wanted to give back.”

In September 2017, Blake shot her first fighter session, which she describes as “life changing.” Her nine-year-old fighter was in remission from leukemia. “She was so strong but you could also tell cancer had broken her in so many ways,” she says. “I had a daughter who was a year older at the time. As a mother, it was heart-breaking to try to imagine everything this girl had been through.” Blake stays in touch with several of the families she’s photographed.

Photo: The Gold Hope Project

Dawson says these fighters and their families “have a really unique spirit usually and I think that definitely rubs off on the photographers who get to work with them one on one.”

As the Gold Hope Project grows, Dawson hopes to raise money to help fund critical research on pediatric cancers. “The stats are unfair when it comes to pediatric cancer specific research, a fact I learned after Ava got sick,” she says. “Her type of cancer had no new medical advancements in over 40 years due to lack of research. This year we will be able to join other organizations and fund research grants specific for DIPG and we are hopeful that one of these research studies will lead to better treatment options and one day a cure.”


For fighters stories or to find out how you can get involved, check out The Gold Hope Project’s website.

Cancer

How To Survive Your Child’s Cancer Diagnosis

A child getting sick is every parent's worst nightmare, but by keeping vigilant and accepting the support of others, you and your family can get through this.

Your child has cancer.

On January 29, 2015, Brandi and Mike Matthis of Baton Rouge, Louisiana heard that devastating sentence about their daughter, Alli, who was six at the time.

Alli was so exhausted she couldn’t walk from the sofa to the fridge for a snack. Her pediatrician said it was anxiety and wanted Alli to have a consult with a psychologist before she would do a blood draw. However, Alli was acting totally unlike herself and Brandi’s intuition told her something was seriously wrong.

Two days later, mom got Alli in to see a pediatrician, a family friend. He did a blood test that day: Alli had Acute Lymphoblastic B Cell Leukemia.

“Her white blood count should have been between 5,000-10,000,” Brandi says. “It was 500,000.”  Alli’s organs were starting to shut down and she was in danger of having a stroke. The local hospital airlifted her to St. Jude Children’s Research Hospital in Memphis where she remained for the next 10 weeks with Brandi.

The next couple of years was an upsetting whirlwind of weekly chemotherapy treatments both in Memphis and at a satellite of St. Jude’s in Baton Rouge. The chemotherapy for Alli’s particular type of cancer should have been straightforward and not terribly harsh. However, Alli’s genetic makeup was unusual and made the chemo even harder on her body than most. She dropped below 55 pounds and could not walk for the next two years. A couple of times her reaction to the treatment was so severe it nearly killed her.

But Alli survived. Today she walks on her own, goes to school every day, and has been cancer-free for more than a year.

So how do you make it through a parent’s worst nightmare? Here’s what Brandi says got them through their child’s cancer diagnosis.

A blonde s kissed by her daughter on the cheek, who is wearing a headband because she is undergoing cancer treatment.

Brandi and her daughter Alli during treatment.

Accept Help and Gifts

Some people would rather do everything on their own. But if your child has cancer, Brandi warns, this is not the time to go it alone. Whatever people offer; accept it.

For two years while Alli was in treatment, friends put together a meal drop-off schedule and a cooler sat on the Matthis’s front steps for deliveries. It was a small thing, but it made a huge difference: it means that for every night for two years, the Matthis family never had to think about making dinner.

Have pets? When Godiva, the Matthis’ young, energetic dog, needed more exercise than they could provide because of Alli’s treatment, another friend set up a private Facebook group of volunteers. They came over and took Godiva on long walks or brought their own dogs over to play with her in the backyard so she was too tired to be a concern. While Brandi had briefly considered rehoming the dog, both daughters were devastated at that possibility. Saying yes to a group of volunteers who let themselves into the backyard every few days meant that didn’t have to happen.

A girl without hair in the midst of chemo treatment pets a brown dog.

Alli and her dog, Godiva.

“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good.’ When your child is going through something so traumatic [as cancer], say yes.”

If you are horrified at the thought of allowing a friend, acquaintance or even a stranger to spiff up your home for free, let that go. Don’t stop anyone from unloading and loading your dishwasher or helping you fold laundry. These small bits of help will be life-savers, because chemo makes the immune system weak and accepting cleaning help means your child is less likely to pick up a life-threatening infection. “Someone even offered to come over and sanitize the house before we got back from a chemo treatment at St. Jude’s,” Brandi says. “And I said yes.”

As for gifts, don’t worry about a sick child getting spoiled. If someone asks for your address because they want to drop something off, give it to them. These are not normal times. Whether it’s a coloring book, a deck of cards, a fancy dress or a gigantic inflatable unicorn that shows up on your front lawn with a loving note, the distraction of opening a present can go a long way with a sick child.

“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good,’” Brandi says. “When your child is going through something so traumatic, say yes.”

Question The Doctor

You are your child’s advocate, so it’s your duty to understand her treatment protocol.

“You have to ask questions,” Brandi says. “I don’t care if you have to ask 3-4 times. You ask them until you have understood the answers.”

“Even at an amazing hospital, people are human and they make mistakes. You are your child’s voice. You have to be on top of everything.”

When you pick up medications for your child,  make sure they have given you the right medicine and the right dose. Several times Alli’s doses were off; Brandi only caught it because she kept a journal of everything Alli was taking.

“Even at an amazing hospital, people are human and they make mistakes,” Brandi says.  Be sure you know what’s going on at all times and make sure every doctor, physician’s assistant, nurse and pharmacist is correct about your child’s treatment. Your child’s doctor has a lot of very sick patients, but you have one very sick child. “You are your child’s voice. You have to be on top of everything,” she says.

But Remember: Google Is Not A Doctor

Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.

Looking up your child’s diagnosis and prognosis may be tempting, but since every child responds to treatment differently, it may not be wise. Alli had a tough time with a treatment that was supposed to go smoothly. Some children sail through treatments that are harsh on others. Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.

Research Hospitals Before Treatment

Once your child starts a treatment protocol, whether chemo, radiation, surgery or all of the above, you cannot change where she is being treated unless that treatment has failed. That means picking the right hospital from the outset is key. Discuss the options with your pediatrician, take notes, and make a list of the pluses and minuses for each.

Brandi says her family was lucky because St. Jude’s has a satellite affiliate in Baton Rouge, so Alli only needed to go to Memphis for treatment periodically. And when she did, Brandi and Alli stayed at the Ronald McDonald House along with other families whose children were receiving cancer treatment at St. Jude too. Ronald McDonald House, which does not charge for accommodations, was an incredibly supportive environment for the Matthises, allowing them to face some of the roughest spots of Alli’s treatment surrounded by people going through the same thing.

A little blonde girl smiles as she holds up a certificate showing that she has successfully undergone chemotherapy.

Alli posing with her certificate declaring her cancer-free.

Take Care Of Your Family’s Mental Health

Beyond the pain and discomfort of treatment, your child will navigate a forest of powerful emotions as they go through treatment: fear, anxiety, and uncertainty. Your child may also make friends at the hospital who don’t survive, as Alli did. “I don’t know how Alli will process that,” Brandi says. “It was devastating and one of the reasons why I had her see a child psychologist. I didn’t want her to keep all of that in and then explode when she’s 16.”

“If you have a religious faith, go towards that. If you don’t, go towards the people you love.”

If psychological services are available to your family and your child, take advantage. Don’t burden your child with negative feelings you can address with a professional, a friend, or a clergy member. “If you have a religious faith, go towards that,” Brandi says. “If you don’t, go towards the people you love.”

The Lighthouse Family Retreat a faith-based organization that helps families of every denomination get through childhood cancer, was a big help to the Matthis family too and they attended two week-long beach retreats. Ask your child’s doctor or your clergy about other organizations like it that can help give you strength while your family lives through childhood cancer.

Chronic Illness

Mixed Blessings

Multi-ethnic patients can have a harder time matching with a bone marrow donor. This nonprofit aims to change that.

Bone marrow donation can save the life of a patient with a blood disease like sickle cell, lupus or leukemia. But unlike blood donation, bone marrow donation requires a similar genetic makeup between donor and recipient, so mixed race patients can have much harder time matching with a donor because ethnic minorities are underrepresented in the bone marrow donation registry.

After Athena Asklipiadis, who’s part Japanese, Greek, Italian, Armenian and Egyptian, happened upon a bone marrow drive and learned about this problem, she was inspired to launch Mixed Marrow, a nonprofit that aims to register more diverse donors. She also helped create a documentary around the issue.

Folks talked to Asklipiadis about the importance of bone marrow donation and how Mixed Marrow is spreading the word. The following excerpts have been edited for clarity and brevity.

How did this issue come to your attention?

Blood-related diseases were on my radar because my aunt had battled lymphoma and passed away, so I was searching for some cause to get behind. That was around 2008, about a year after she passed away, and it was kind of serendipitous that I happened to run into a bone marrow drive at a Japanese cultural festival in Los Angeles.

The patient that was being highlighted was Krissy Kobata and this patient was half Japanese like myself. She was in her twenties at the time, so I found a lot of similarities with her story and mine. When I was reading some of the materials they had at this drive, that was the first time I was really aware of the fact that ethnicity played a large role in [bone marrow] matching. I registered try to see if I was a match.

At that time I was involved in a lot of mixed race kind of communities online, and I was really surprised that not a lot of people my age were really talking about it or knew about it. I was just shocked that nobody was really talking about Krissy or other people like her in California. Other mixed people were just kind of rare to get on the registry. I started sharing online, and it kind of compelled me to want to start my own organization.

.Athena Asklipiadis and other Mixed Marrow volunteers

So, how do you register as bone marrow donor?

There are two different ways you can register. You can either go to a live drive that’s happening–most states have a Be The Match recruiter or organizations that do bone marrow drives at public community events. You could also register online. You fill out the application portion on the website and they’ll send you a swab kit. Once you get the kit, you just swab the inside of your cheeks and send it back. The kit will then be processed in a laboratory and you will be added to the donor database.

What was your biggest challenge with Mixed Marrow?

I think our challenges are pretty similar to other recruiters around the world. It’s really difficult sometimes to try to outreach to the public who have no idea what being a donor means. They have a lot of misconceptions that it’s super painful or that you’re awake during the bone marrow operation. We don’t want to coerce or like pressure somebody register if they’re not ready or they’re not educated enough.

We do our best to try to educate people and we’re very honest with them. If you are called to be a matching donor, you will either be donating marrow (a surgical procedure under anesthesia) or non-surgically when stem cells from your blood are taken from your arm called PBSC donation.  In both cases, your body will replenish the donated cells within a couple of weeks.  And most donors are able to return to work and normal activity very quickly. Dispelling myths is probably the biggest challenge and that’s why I created a documentary.

Tell us about your documentary, Mixed Match.

My professional background is actually in entertainment and broadcasting, so I felt that media was a good way to share these stories. I pitched the idea to Canadian filmmaker Jeff Chiba Stearns. I didn’t know him, but I had been familiar with his work. I just sent him a blind message on Facebook. I wanted to create something that educated people but also tapped into the real life stories of the patients that are young and lively. I wanted show that these are everyday people who deal with [blood] disease and it could be curable at the hand of a stranger.

It was about six years to complete the film. So Jeff and I took over 200 hours worth of footage [the finished film is 96 minutes]. Thankfully, last October we were able to release it. It’s screened at over 30 film festivals so far. Every screening has a bone marrow drive, so people have the opportunity to sign up.

How have audiences responded?

We’ve won several awards, audience choice award and jury awards, for the film. The most important thing though above all that, is that we’ve able to register several groups of donors to the registry that have either been compelled at the time of seeing the film or they signed up online later.

Besides from the documentary, are there other ways that you’re performing outreach?

We’re all volunteers completely, so we do a lot of outreach online. We do drives at different events, and then we do a lot of talks where we’ll go to a college campus, and talk about this issue with cultural club or different ethnic groups. We just let them know how important it is and that minorities are really under-represented [on the bone marrow registry]. The film has been the major focus in the last year just because it’s been a really good tool at showing people the stories without having to do so much heavy reading.

Have you matched with anyone?

No. It’s very, very difficult to match with somebody. It’s about a one in 500 chance you’ll be called, and then you would have to go through a series of others test to see if you are a perfect match for somebody. Unfortunately, I’ve never been called. I’ve been registered since 2008, but then there are people that get called two months after being registered. I’d totally be willing, but I’ve not had that opportunity yet.

Is there anything else that you’d like readers to know about registering or about Mixed Marrow?

This type of donation is not at the mercy of just doctors and research and science. It’s really based on humanity, and just being willing to help somebody. So, I just think that there is something really beautiful about that, that we have a cure within ourselves. A lot of people are afraid to do for a stranger or someone they don’t know, but if you put yourself in their shoes or put your mother or your sister or somebody in a patient’s shoes, you would hope that whoever the stranger is in the world would answer that calling and be on the registry. This is just one really unique way of that we as average people can do an extraordinary thing for somebody.

Want to register as a bone marrow donor? Search for an upcoming drive near you or sign up online.