Childhood Cancer. These are scary words, but until recently they have not held any real meaning for me. I would see commercials for St. Jude; those commercials with celebrities playing with sickly yet smiling children. I would say a quick prayer for those children and their families, and perhaps donate when extra funds were available. I never thought pediatric cancer would touch my circle.
Until it did.
A short three weeks ago my friend took her daughter to the doctor because she had hurt her leg. We had a homeschool co-op class the day before the appointment, and we gave our well wishes, and said we’d pray it wasn’t something major like a break. April and her toddler daughter, Laina, went into Children’s Hospital, because of a hurt leg, thinking they’d be back home that night. They went in, and have not come back out. Leukemia. Oh, how minor a broken leg sounds in comparison!
In these short weeks, I’ve learned some scary truths about pediatric cancer. It kills more children than all other childhood diseases combined, yet it only receives 4% of all the funding for cancer research. Why? In part, many people are simply not aware or educated about pediatric cancer, myself included.
September is Childhood Cancer Awareness Month. To help put a face and name to pediatric cancer, I asked April to answer some questions about her family’s journey:
What led to Laina’s diagnosis?
Laina hurt her knee in a wading pool in early August. I saw her hurt it; there was a legitimate injury. We took her to the ER where they diagnosed a sprain. They said to see her pediatrician if she was still limping the next week. She was, so we went in exactly one week later. They did a second set of X-rays there, and said everything looked fine. “If she’s still limping next week, we’ll refer you to a orthopedist.” She seemed to get better after that though. Sometimes she didn’t limp at all. But then she started to randomly fall down, so we called in the referral and got an appointment at New Orleans Children’s Hospital for the next week. The day of our appointment was exactly three weeks after her initial knee injury. On the orthopedist’s X-rays, there was a slightly darkened spot. We were told it looked like a bone infection, and they would need to draw some blood. Her labs came back normal though, and we were admitted to get an MRI the next day (it was evening by this point). The MRI showed that the marrow had broken through her bone, that was the dark spot on the X-ray. This is a classic sign of leukemia. We were moved to the cancer ward. She got a bone marrow biopsy the next day that confirmed the diagnosis. Her orthopedist appointment was at 1 pm on Wednesday, August 19. She started chemotherapy Monday morning, August 24, when chemo drugs were injected into her spinal fluid during a lumber puncture.
Other than the obvious stay in the hospital, how has this affected your family?
I can’t even really begin to answer the impact on my family. I stay at home, so someone had to watch my son. My husband’s mother came in from Austin for a week, which was SUCH a blessing. My husband has filed for FMLA (Family Medical Leave Act). We have no idea what our long term finances will look like. We’re okay for this month, and that’s really all we can focus on for now. We are having to remove the carpet in our master bedroom. It’s always had a slight mold problem, but with Laina’s immune system being, well, not there, that’s a major problem now. We were told we should remove all the carpet in the house, but we don’t really have the time or money for that. My older child, Ethan, who is 4, has regressed in some ways. His world was me, play dates, homeschool, playing outside. Now I see him twice a week. This question is just so all encompassing. Everything. It has changed everything.
As soon as Laina was diagnosed, our circle of friends jumped into action. For me personally, I can say it’s hard to know what will be of most help. Can you give us some insight into this?
Honestly, I didn’t know how to be helped at the time. My mind was all over the place with her treatment options, logistics of being two hours away from home, and a sudden inpatient stay. Looking back, one of the best gifts I got was stuff for me – shampoo, chap stick, hair bands, face wash, and loose comfortable clothes. Someone to watch Ethan while we figured things out was huge. Food for us and for Ethan and his caretaker (Mimi, at the time). Money. We went back and forth a LOT in those first few days. Gas in a minivan isn’t cheap. A huge help was having someone local (New Orleans) to bring last minute items. One day they upped Laina’s fluids, to flush out excess electrolytes, which meant she peed. A lot. So much that we ran out of pants, because her diapers kept leaking. A friend of a friend, whom I’d never met, brought me some of her daughter’s pants. That was so touching and useful. Another local friend lends us their laundry facilities. Another sent snacks for me and Laina. Another paid for delivery over the phone. Another sent books on how to live with childhood cancer. Another sent a book for Ethan on how to deal with a chronically ill sibling called “My Name Is Jack.” Another made cancer awareness decals for our car. Many have offered to clean our house. Someone mows our lawn. There’s just so many ways to help. I want to say “just ask”, but I didn’t ask for any of our best gifts. Just do what you can. Be a support. And if you send snacks, send healthy snacks. Junk food is nice, but we need to stay healthy. And remember that cancer treatment lasts months or years. We are in the beginning, but other cancer moms have said that they feel isolated after the first couple of months. The help fades, they are stuck at home because of their child’s immune system or illness. Remember to call and have playdates. Offer to babysit, so mom and dad can have some time off.
What is important to know and do when visiting Laina or any childhood cancer patient in the hospital or at home?
First off, if their immune system is super low, just don’t visit. Send a note or card instead to let them know you’re thinking of them. If you do visit, just make sure you wash your hands, perhaps wear a mask, and don’t have anything nasty on your shoes. Ha! Don’t visit if you or anyone in your home has been sick within the last seven days. Other than that, you’re fine. Many times cancer kids will have a decent immune system where all these precautions aren’t needed, so just check with mom and dad. I advise against dropping in. Our average day has 20+ people in and out of our room – oncologists, nurses, residents, med students, social workers, physical therapists, speech therapists, and so forth. An additional visitor can be burdensome, so just call ahead.
Is there anything else you’d like the world to know about childhood cancer or your journey specifically?
There is SO MUCH I want the world to know about childhood cancer! I’ll try to pick the most important. It moves FAST. Laina’s bloodwork was that of a healthy child on Wednesday. By Saturday she had no immune system, and she hadn’t started chemo yet. We caught her cancer super early because of her knee sprain. Not all are so lucky. If you know something is wrong, push for tests.
Childhood cancers are woefully underfunded. No new chemo drugs have been developed recently for children. Kids are simply given adult chemo meds, with dosage adjusted for weight. They are far too toxic for growing bodies and result in “late effects”. That is when everything seems fine for months or years, and then problems show up. Late effects can be infertility, delayed puberty, cognitive delays, emotional instability, ADD, learning disabilities, and more. Two thirds of childhood cancer survivors develop late effects. We need drugs developed specifically for children.
Currently, childhood cancer gets 4% of federal funding for cancer research. This is unacceptable. Pediatric cancer rates are up 29% in the last 30 years. We don’t know why. We don’t know what causes it. We don’t know how to shield growing brains while killing cancer. We don’t know because we don’t fund.
A total of 25% of kids diagnosed with cancer die. Some cancers are terminal on diagnosis because no new research has been done on them in 30 years. Cancer is the leading cause of disease related death in children. More children die every year from cancer than all who died on 9/11. A total of 74% of survivors will have chronic illnesses, and 40% of survivors will have severe life-threatening illnesses due to a suppressed immune system. 1 of every 285 U.S. children will be diagnosed with cancer. For reference, your chance of getting chicken pox is 1 in 2,254.
Remission isn’t cure. For our cancer, Acute Lymphoblastic Leukemia, remission is usually achieved in one month. But if left alone, the cancer will return. Our treatment plan is 2.5 years long. That’s chemotherapy for two and a half years. My 21 month old will be four when she finishes chemo. She will have follow up visits to check for remission and late effects for the rest of her life.
What can we as local moms and families do to join you and other families battling childhood cancer?
Make noise! It raises awareness and it’s free.
Donate money! There are some great research foundations out there. Children’s Cancer Research Fund, St. Baldricks, and Cookies for Cancer are all great organizations.
Donate blood! It really does save lives. Laina was diagnosed only 20 days ago, and we’ve already used donated blood.
Donate platelets! We haven’t needed any, but there is a shortage. Sign up for the bone marrow registry at Be The Match! Bone marrow has to match almost exactly, so the bigger the pool of donors, the better possibility of a match. Donate ESPECIALLY if you are ethnic. Ethnicity plays a role in genetic matching, and there’s a shortage of ethnic marrow.
Be an organ donor! If you are pregnant or planning more children, donate your cord blood! This can save a life for a child with leukemia.
Please take action in some way. Childhood cancer happens more than we think. We need more awareness and more funding so we can reach a cure. Let’s take a stand against childhood cancer together! Thank you.
To follow Laina’s Story, like her Facebook page:
https://www.facebook.com/ForTheLoveOfLaina?fref=ts
To donate in support of research:
http://www.stbaldricks.org/
http://www.cookiesforkidscancer.org/
To join the bone marrow registry:
https://bethematch.org/
To donate blood:
http://www.thebloodcenter.org/
You may donate in the name of Alaina Blackburn if you wish.
Editor’s note: Many thanks to Laina and her mother April for sharing their story with us. Our thoughts and prayers go out to your family; and to ALL local families who are affected by childhood cancer.
