Many people asked how they could help us during the 18 months our young daughter went through chemotherapy for a rare disease called LCH. At the time, there were often too many things happening to really think about or be able to articulate what would help. But now that her treatment is finished, I can see what did and would have helped and have decided to make a list to share with those who may wonder how to help a family who has a child with cancer.
Some children with cancer only need outpatient care, clinic visits weekly or monthly, and their lives are relatively normal between visits. Other children spend months and months in the hospital, too sick to go home, or for ongoing treatment. Others, like ours, had periods of time going to clinic and periods of time in the hospital… Some families are conveniently near the hospital where their child is being treated while others travel from other states and are away from their families for weeks and sometimes months at a time to be with their sick child. Because of the wide variety of experiences, I’ve asked other moms of children with cancer what does or would have helped them too. Here’s what we say would help…
1. Help with Children
Hands down, help with children is what the moms I talked to need most. While we spend most of our time and energy caring for our child with cancer, our other children often feel neglected, their routines are disrupted and we feel guilty because we can’t do it all. You can help by inviting our children over to play, taking them on outings with your family, or giving them any kind of special attention. As one mom said, “…someone being there for my kids in general…” is a big help.
When our child is in treatment, the family’s routines are disrupted, especially when our child is in the hospital. Some families like us are fortunate to have family members nearby to help, but others do not. Some are single parents, or have spouses who are deployed or travel frequently for work, have health issues of their own or other sick children. You can help by taking our kids to and from school and to their other activities, babysitting during the day, after school or even overnight so we can stay with our child in the hospital. Or help during emergencies, like when we took our son to Gramma’s house at 2 am on our way to ER with Jenna (which is not at all uncommon for children in treatment). In extreme cases, a child with cancer may be in the hospital for months at a time, sometimes in another state, mom or dad staying with them. These families need extra, extra help and support.
We struggle to stay connected with ourselves, our spouses and our children. Sometimes it’s nice to get out without our sick child, alone, with our spouse or with our other kids, to have the chance to decompress and separate ourselves from “the cancer world,” keep our marriage alive and have some fun with our other children. Babysitting our sick child is a great help, whether in the hospital or at home. Not everyone is up for offering this kind of help. You come face-to-face with what we deal with as parents everyday and not everyone is up for the challenge. (And that’s okay. There are other ways you can help. Read on.)
Babies and Young Children
Parents of babies, toddlers and young children with cancer may need more help with their sick child. Our Jenna started treatment just after her 1st birthday and for many months, 90% of my days were spent holding her, whether we were at home or she was in the hospital. It was difficult to do much of anything. When someone could hold her, for even a half hour, I could take a quick shower, grab something to eat or take a short walk to decompress. When your little child is in the hospital, there are some resources for help, but not a lot that can handle a little child. At our hospital, there is a volunteer service to help but sometimes you have to wait hours for someone to come and often I found they were young adults unprepared to cope with Jenna’s crying after I left.
On the other hand, there are families who have older children in treatment and younger children to care for too. When your sick child goes for treatment in the oncology clinic, no siblings are allowed. If your child is admitted to the hospital, there are many months during the winter where NO children under 12 are even allowed to visit the hospital, siblings or not. While these rules are in place to protect the spread of disease, it is an extra strain on parents trying to keep their families together and connected. And more reason that a family whose child has cancer needs help with their other children.
Keeping our kids healthy during treatment is crucial, not just our child with cancer, but our entire family. With that said, if you invite one of our children to play, please let us know if any of your family members have been or are sick beforehand. And don’t send your child to play at our house if they are sick, have been sick, or if anyone in your family is or has been sick. Because our child with cancer has such a weakened immune system, even a simple cold can result in an ER visit and hospital stay. Depending on the extent of our child’s treatment, we may not allow any children to visit our home at all.
2. Reaching out
Reaching out to families who have a child in treatment is perhaps one of the easiest, most powerful things you can do to help. Often people back off while your child is sick, not wanting to intrude, which is totally understandable… But don’t. Caring for a child with cancer is lonely and isolating. Because of Jenna’s frequent hospital stays and high susceptibility to infection, I often would go months without seeing anyone but my immediate family, my mom, home care nurses, hospital staff and doctors. Some friends said they wanted to give me space and waited for me to reach out to them. Others said they didn’t know what to say, so they said nothing. Knowing that we are remembered and cared about makes our trials endurable. One grandma said, “It really does not matter what they do for you, at the time you are going through so much. It is just nice to know that someone really cares… so do not be afraid to tell them.”
A simple message is an easy way to reach out without intruding. Sending a text, email or Facebook message saying, “I’m thinking of you” makes a huge difference. Sending a card or note in the mail is very thoughtful. We especially loved receiving mailed cards when Jenna was in the hospital. Some hospitals have an option on their websites to send email to patients. This is a great way to send a simple message that you care. One mom says, “We have had to stay isolated for so long, a call, a text, dropping by when you’re healthy, more of that sort of thing would have made things more bearable.”
If you decide to call, be prepared for anything. We may be so strung out from not sleeping, shock and stress we can hardly form a coherent sentence. Or you may get more than you bargained for if you catch us at a moment of anger and get lashed out at inadvertently. Or you may get totally downloaded on and hear much more about everything we’re going through than you ever wanted to know. In other words, if you really don’t want to know how we’re doing (and it’s okay if you don’t), don’t ask. Instead, go for a simple, unintrusive message.
Some people, like my husband, have no problem talking to people when they’re stressed. Others, like me who are more introverted and process stress internally, have a hard time talking about what is happening. Based on my own experience and personality, here are my recommendations about calling. If you call, don’t call the hospital room and be careful calling the home phone. You may be waking our child (and us) from a very-much-needed nap. Inevitably, the hospital or home phone would ring just after I’d finally gotten Jenna to sleep on my lap and couldn’t get up to answer it. Instead leave a message with the front desk or nurse’s station, or call our cell phones. If you want to talk, it’s best to arrange a time. And don’t be surprised, or take it personally, if we don’t call you, return your call or respond to your text or email.
Another way to reach out is to drop by or visit. In general, I’d say don’t drop in at the hospital or at home unannounced and if you do, don’t stay very long unless you’re invited to. You don’t know what you may be dropping into – you may get lucky and come at a time when we need and welcome company. You could just as easily arrive after some very bad news, in the middle of a nap or during a procedure. If you come by the house, don’t expect to be entertained or even invited in. You could bring food or offer to help with something around the house or entertain the other children. We understand your intentions are so good, personally I just had no extra energy to deal with visitors. Here again, call to arrange a time if you want to visit. More importantly, DO NOT visit or drop in if you are sick!
Visiting from out-of-town
If you live out-of-town and want to come help, let us know you would like to come help. Make all your own arrangements, stay in a hotel, rent a car. Come prepared to help, to do whatever needs to be done, not to be entertained or catered to in any way. We may not even have the energy to talk with you. And if we don’t invite you, don’t take it personally. We’re probably completely overwhelmed and too stretched beyond our limits to even think about it.
If you reach out to a family who has a child has cancer, don’t make any demands of them. If you’re not part of the “inner circle” of immediately family and closest friends, you may have to wait till you see an update on Facebook. Or you can request to be added to the “inner circle” of communications… However you choose to contact the family, make sure you do with only positive thoughts, complete generosity and offers to help.
I think it goes without saying that anyone going through extensive medical treatment will, at some point, need financial assistance. Whether you have great medical insurance coverage or not, there are many things that aren’t covered by insurance:
- Travel expenses
- Reduced wages from missing work (Family Leave is a blessing, but is unpaid, and vacation time only goes so far)
- Meals during long clinic visits and hospital stays (if you’re not the patient)
- Hotel expenses for those who live too far away to go home at night (even the Ronald McDonald House costs money)
- Co-pays (which can be extensive)
- Prescriptions not covered by insurance
- Other medical supplies not covered by insurance
As one mom said, “Financial is always a worry.” That’s an understatement. It is shocking how quickly expenses pile up.
A great way to help is by organizing a fundraiser. Whether you do it through your church or other organization, or set up an online fundraiser (there are many websites that offer this service), fundraisers help raise awareness for the family’s needs in people’s thoughts and hearts, educate others on their child’s particular disease or cancer, gives others the opportunity to help, and ultimately, raise money quickly for a family who needs it.
Other Ways to Help Financially
If a fundraiser seems like too big an undertaking, here are other things that moms said would help them financially:
- Bringing meals to the house or to the hospital
- Prepaid hospital cafeteria cards
- Restaurant and fast food gift cards, to establishments near the hospital or near home
- Basic groceries – milk, bread, eggs, butter, etc.
When our daughter was in treatment, some of my husband’s business associates pooled their money to hire a cleaning service for us. Another family adopted us for Christmas. While these didn’t help with our expenses not covered by insurance, they helped greatly in easing the strain.
Cash is always helpful, whether it helps with something like this from a mom who said, “…money to put toward a hotel room if you’re too far away to go home. Sometimes you just need a long sleep in a QUIET big bed in a dark room and a good long shower to rejuvenate yourself to continue.” Or helping with all the other mounting expenses, cash helps.
4. Chores and Errands
If you can imagine leaving your home in a hurry with barely time to pack a bag, think what would need to be done while you were gone or when you returned. These are the kinds of things that you could offer to help a family who has a child with cancer…
- Take the garbage can to the street on garbage collection day
- Collect mail (with permission)
- Mow the lawn
- Water the lawn or garden
- Rake leaves
- Help care for pets
- Shovel snow
- Clean the house (there are special cleaning recommendations made while going through treatment)
- Shop for groceries
- Pick up dry-cleaning, go to the library, run whatever errands they need help with
- Offer to make phone calls or field calls
Almost whatever you can think of, we will probably need help with. As a parent of an infant on chemotherapy, I’ll tell you at our house, between holding Jenna 90% of the time and my husband working 2 jobs, almost nothing got done. Even basic things like laundry and preparing meals were a huge challenge for many months. Any help we received was greatly appreciated and extremely helpful.
How To Ask
When our daughter was going through chemotherapy, we needed A LOT of help. We were well aware of being in over our heads and knew we couldn’t handle it alone. Yet if you’d asked me, rarely could I have said what we needed help with, only that I knew we did. That’s why I made this list. If you really want to help a family who has a child going through cancer treatment, instead of making an open-ended offer, like “Let me know if you need any help”, say things like, “I’d like to bring you dinner. Does Tuesday work for you?” or “We’d like to take your son/daughter to the park with us this afternoon. Is that ok and can we pick him/her up at 4pm?” or “I’m on my way to the grocery store. Do you need bread or anything else?” or “It looks like your lawn needs to be mowed. Can we come mow for you?”
Whatever you do, showing that you care any way makes a huge difference. You cannot make it better, but you can help make it more bearable.
Thank you to all those who have made this leg of our journey with Jenna more bearable!