We found that the most helpful thing was when people brought us food to eat while in the hospital (where food is scarce for everyone but the patient), and also while recuperating at home. Often feeding ourselves took a back seat to caring for Ayla. This is not conducive to garnering energy to care for someone else!

We came home from the hospital one evening right before Christmas, and found a freshly cut, fragrant Christmas tree leaning next to our door. I’ll never forget that kindness.

My husband’s cousin sent her cleaning lady over to our house. It was so neat and such a luxury to come home to find the stove and windows sparkling clean.

One of the ladies from the school where I worked came up to the ICU (intensive care unit) waiting room where we were sleeping and pressed her house key into my hand. She lived 5 minutes from the hospital. She said, “My basement is made up, there’s a futon, there’s a TV; you are coming and staying at my house.” I hardly knew her, but we accepted. Every day when we came in from the hospital there was some cute little treat waiting for us like a bowl of cookies, or two packages of hot chocolate and a thermos of hot milk.

For many of the families I work with, allowing acquaintances into the home to clean and cook is just too personal and uncomfortable to allow during such a private time in their lives. It’s just too intrusive. However, these families have shared many stories of anonymous giving. For instance, the following were very welcome: restaurant/fast food certificate, baskets of beauty products mysteriously left on the doorstep, journals, phone cards, movie rental cards, gas cards, and Polaroid film and camera left at the doorstep. The anonymity helped prevent the family from feeling indebted.

Friends from home sent boxes of art supplies to us when the whole family spent those first 10 weeks at a Ronald McDonald house far from our home. They sent scissors, paints, paper, and colored pens. It was a great help for Carrie Beth and her two sisters. One friend even sent an Easter package with straw hats for each girl, and flowers, ribbons, and glue to decorate them with.

What I wished for most was that friends and family had been able to call more often to see how we were doing; that someone could have handled my confidence on the good days and my tears on the bad days. It somehow took too much emotional energy to make a call myself, but I valued any phone call I received.

Word got around my parents’ hometown, and I received cards from many high school acquaintances who still cared enough to call or write and say we’re praying for you, please let us know how things are going. It was so neat to get so many cards out of the blue that said, “I’m thinking about you.”

Constance and Michael and their son Byron were the only friends who always said, “Whenever you’d like us to watch Jamie, you just let us know,” but because his seizures weren’t controlled, we hesitated. It was literally 2 years later that we finally took them up on their offer.

A close friend asked what I needed the day after Michelle was diagnosed. I asked if she could drive our second car the 100 miles to the hospital so my husband could return in it to work. She came with her family to the Ronald McDonald House with two big bags containing snack foods, a large box of stationery, envelopes, stamps, books to read, a book handmade by her 3-year-old daughter containing dozens of cut-out pictures of children’s clothing pasted on construction paper (which my daughter adored looking at), and a beautiful, new, handmade, lace-trimmed dress for my daughter. It was full-length and baggy enough to cover all bandages and tubing. She wore it almost every day for a year. It was a wonderful thing for my friend to do.

A friend of mine called and asked very tentatively if we would mind if she started a support fund. We felt awkward, but we needed help, so we said okay. She did everything herself, and the money she raised was very, very helpful. We did ask her to stop the fund when people started calling us to ask if they could use giving to the fund as an advertisement for their business.

My husband’s coworkers didn’t collect money, they did something even more valuable. They donated sick leave hours so he was able to be at the hospital frequently during those first few months without losing a paycheck.

The day my daughter was diagnosed, my husband’s coworkers passed the hat and gave us over $250. I was embarrassed, but it paid for gas, meals, and the motel until there was an opening in the Ronald McDonald House.

Finances were a main concern for us because I wanted to cut back on work to be at home with Meagan. Sometimes my coworkers would pool money and present it with a card saying, “Here’s a couple of days work that you won’t have to worry about.”

Coworkers of my husband held a Halloween party and charged admission, which they donated to us. We were very uncomfortable with the idea at first, but they were looking for an excuse to have a party, and it helped us out.

I am the one handling all of the administrative duties for the family. We have learned when Kevin gets his MRI to ask the techs to make a copy for us right then and there. I have to keep copies of everything regarding Kevin’s treatment and surgery, including pathology reports, second opinion consults, lab reports, etc. I now have copies of all MRI films, all of the hospital records, every report that was ever written, and all of the radiological reports. I make tons of copies of these in case they’re ever needed.

Talking to insurance people really hits a sore spot with me; right from the beginning of the call, there is a menu with many options to choose from, and it can take 10 minutes if you are lucky to get a real live person on the phone. I have, many times, asked for supervisors, demanded and insisted that expediency is necessary. I have learned to take the person’s name, their title, and write down time and date on every conversation I have. It is a time-consuming job.

Our son had a rough time with fever and seizures during chemo, and he was really missing his routine. His preschool teachers, Kate and Ellie, surprised him one time with a homemade book. They had all the kids pose for an instant picture for the cover, and each one drew a picture for the inside. He loved it.

On a Thursday, our second grade son Christopher was diagnosed with a pilocytic astrocytoma of the cerebellum the size of an orange. By Friday morning, Christopher’s classroom, Room 35 at Carpenter Avenue Elementary School, was already making Get Well Pizza cards for him. One of his teachers sat down with the kids and talked about what it would be like in the hospital, and an appointed person from the school community called us regularly for updates and passed on prayers and loving regards from families and staff. We had amazingly touching responses from many school parents, teachers, coaches, and even our principal.

The PTA president came to visit and brought a huge card signed by all of Christopher’s classmates, teachers, and other Carpenter friends. She had also lined up parents from Room 35 to bring dinners to my husband Jim and I for the entire upcoming week. As the weeks went on, the love and support just escalated. Christopher found his greatest joy throughout the whole hospital ordeal was receiving more incredible Beanie Babies than he could have ever imagined getting.

Our whole family has a view of Carpenter Avenue Elementary School that has changed us forever. They are an extraordinary community of families that I wish every family in need can experience.

Brent’s kindergarten class sent a packet containing a picture drawn for him by each child in the class. They also made him a book. Another time they sent him a letter written on huge poster board. He couldn’t wait to get back to school.

Ethan’s school read Sadako and the Thousand Paper Cranes, which is a story about a Japanese girl from Hiroshima who contracted leukemia after World War II. The crane is the sign of health, good fortune, and long life in Japan. There is a legend that if you fold a thousand origami cranes, you will be granted one wish. Sadako’s wish was that she live a long and healthy life, but she died of cancer 386 cranes short of her goal. Her classmates finished her cranes for her, and paper cranes subsequently became a symbol of peace.

So, the kids at Ethan’s school began to fold cranes for him. Each crane has a wish written on the wing (things like “Cancer Be Gone” and “Ethan, I love your spirit”). Some are the size of a robin, and some are smaller than a dime.

They reached their goal of a thousand last week and they are now hanging (on strands, from one to 10 cranes per strand) on the ceiling over Ethan’s bed. They are absolutely magical to look at, all rotating and casting shadows; and you can actually read each one’s wish on the lower hanging ones. I thought it was a beautiful thing to do.

The day our son was diagnosed, we raced next door to ask our wonderful neighbors to take care of our dog. The news of our son’s diagnosis quickly spread, and we found out later that five neighborhood families gathered that very night to pray for Brent.

Fathers have a deep-seated need to protect their family. Yet here I was with a child with cancer, and there wasn’t a single thing that I could do about it. The loss of control really bothered me. The very hardest thing I had to learn was to let go enough to let people help us.

The most important advice I received as the parent of a child newly diagnosed with cancer came from a hospital nurse whom I turned to when I was overwhelmed with all the advice being offered by family and friends. This wise nurse said, “Don’t discount anything. You’re going to need all the help you can get.” I think it is very important for families to remain open and accept the help that is offered. It often comes when least expected and from unlikely sources. I was totally unprepared at diagnosis for how much help I would need, and I’m glad that I remained open to offers of kindness. This is not the time to show the world how strong you are.

A woman whom I worked with, but did not know well, came up to me one day and out of the blue said, “When Erica gets to heaven to be with Jesus, He will love her.” All I could think to say was, “Well, I’m sorry, but Jesus can’t have her right now.”

Many well-wishing friends always said, “Let me know what I can do.” I wish they had just “done,” instead of asking for direction. It took too much energy to decide, call them, make arrangements, etc. I wish someone would have said, “When is your clinic day? I’ll bring dinner,” or “I’ll baby-sit Sunday afternoon so you two can go out to lunch.”

When in the mall or other public place, strangers had no qualms about staring at Ayla (age 3) who had an eye patch, tubes that sometimes snuck out from under her shirt, and no hair. We combated this by telling her that she was so absolutely stunningly beautiful that people just could not help but stare at her. We really played this up and tied it in to her belief in Snow White, Cinderella, etc. Many times we let her and her sister Jasmine wear their princess costumes out in public. Then they really got a kick out of people staring. I also did not hesitate to tell people that she had cancer when they asked what was wrong with her. I never minimized what she was going through. We talk about cancer freely and how doctors are there to fix you up if you get this.

Whenever someone says: “You’re so strong” or “I don’t know how you do it,” answer: “I don’t do it alone,” or “With lots of help” or (if it’s true) “I’m pretty close to losing it completely.” There’s a thin line between being honest about your situation and being oppressive, for want of a better word. In my more cynical moments, I am convinced the world wants us (i.e., the cancer kids/families) to valiantly triumph over hardship with the Movie-of-the-Week-attitude. Well if that gets them to wash my floors, it’s a small price!

I think some of the most supported families I’ve seen on treatment had a knack at keeping people informed about the current situation. I updated the outgoing message on our answering machine every couple of days and people could call our home for current news (a hospice nurse/neighbor gave me that idea). Other friends from the hospital used newsletters, phone chains, announcements in church, etc. Again, my cynical side recognizes that you’re opening up your most personal moments to the public (anyone who called my house and heard the message the day after my son’s stroke probably felt like an intruder) but it’s a way to help people feel invested in your family.

My daughter Lauren was diagnosed with a very rare and aggressive cancer. We finished treatment in April of this year, and since that time I have been feeling an overwhelming series of emotions, most of which lie at the bottom of the happiness scale. This past weekend, I finally met with my best friend, who had her first baby in March. Needless to say, I have not been overly involved with her life of late. My own was often more than I could hack. This friend did prove to be a true friend throughout the cancer trip as she visited us often at the hospital. She confessed to me that she missed me so much, and that she sometimes mistook my silence for indifference. I didn’t take offense, as I might have, but rather, this seemed to be the “invite” that I needed to re-enter the world that I had left when Lauren was diagnosed. The fact that I had value as a friend, and not just as a caregiver, was a wake-up call. Throughout the past year, I had isolated myself from everyone from my old life, and was starting to think that maybe I would never make it back. Maybe now I can pull back the cobwebs and struggle back.

We had friends and family we thought would be the greatest sources of support in the world. Yet, they pulled away from us and provided nothing in the way of help, emotional or otherwise. We also had friends that we never expected to understand step up in surprising ways. My wife’s friend, Leslie, a busy single woman who we would never expect to do such a thing, actually negotiated time off with a new employer so she could fly from her home in Tampa and help out after Garrett’s transplant. She stayed with us for over a week, then came back a few months later to do it again.

A couple of my SCUBA diving buddies who we liked, but didn’t know well, have since become our best friends. They would visit us in the hospital, bringing both our kids gifts, and giving us a much-needed break. They were the only folks who regularly came by when Garrett was home after the transplant and who always followed our strict rules without complaint.

Of course, the best support we had was from other parents of kids with serious illnesses or problems.

Telling your friends about cancer is difficult, but it’s not as hard as keeping it a secret would be. Fighting this cancer has been a family effort and, frequently, an effort involving our larger circle of friends. The more people we’ve been able to call on for support, the better. We’ve had to keep in mind that we’ve had an opportunity to adjust. But, the news is brand new to our friends, and it can be a shock. People often don’t know what to do or say when they’ve been told that someone they care about has cancer.

After we’ve given them some time, and when they ask what they can do, we tell them something constructive: mow the lawn, take back the recyclables, go to the store, bring over a pizza on Friday night, whatever would help.

Before my son was diagnosed, I had no idea what this experience was like, and I try to remember that my friends don’t really know either, unless I tell them. They can’t know the sleepless nights, the anxiety over tests, the fear when your child says he doesn’t feel well, or the terror that we might lose our precious child. Some of us have found great support and others none. I hope your family and friends come to your side.

I want to say that I hope that cancer does not become your life. For us, it used to be an “elephant in the living room,” and now it’s maybe a “zebra in the kitchen.” There are times when it demands everything you can give, no doubt, but there will be moments when there is time for the rest of your life.