A Mother’s Perspective
by Debbie Kapke
The past year is split into two categories for our family; “Pre-Diagnosis” and “Post-Diagnosis”. Thinking back to the “Pre-Diagnosis” months, I am amused by the blissful simplicity that was once our normal routine. Balancing work, school, dance classes, swimming lessons, school board responsibilities, etc. seemed chaotic at the time. But the months “Post-Diagnosis” introduced us to a new chaos … cancer. Cancer changes everything.
Our 4-year-old daughter, Emily, was diagnosed with Acute Mylogenous Leukemia after two days of fear and uncertainty while her biopsy results were being studied. Grief, remorse, guilt, paralyzing fear, frustration and confusion washed over my husband and I every minute of the first days after diagnoses.
After a few days of feeling like the wind had been knocked out of us, we collected our selves. My husband and I had a series of long talks and agreed that our focus had to change. The only way we could face a challenge like this would be to accept it, face it, be honest about it and make this experience one that would be positive for our children and ourselves. How do you make 5-6 months of hospitalization and chemotherapy a positive experience? That was the next task.
We had to promote the hospital as a good, safe place to be. We had to make it fun! Obviously, living at the hospital is one of the most uncomfortable situations one can imagine. You are in a very intrusive environment and your living space is limited to an area the size of a walk-in closet! I knew that Emily would pick up on how my husband and I responded to our new living situation, so we had to set the example. The first days in our new room were spent cutting out paper flowers, butterflies, dragonflies and an enormous sunshine. Because everyday would have sunshine in it! Emily’s room was decorated from top to bottom. We brought her pillow from home, several of her favorite stuffed friends, her photo album and anything that would help bridge the gap between the outside world and the protected world of her hospital room. Since Emily and her I.V. pole were inseparable (literally), we made sure it was decorated as well. Emily and her Dad came up with a name for her I.V. pole, Mr. Octopus. Mr. Octopus was big and had lots of arms and legs to carry all Emily’s medicine. Whatever it took to make it look and feel fun, we did it!
The doctors, nurses and child life staff became an instant extension to our family, and we encouraged that relationship to help Emily feel more comfortable. I let Emily know early on that she could talk to the doctors and nurses about anything. If she was scared, angry, sad, feeling sick or didn’t want to talk, she could tell them and they would listen. The first week or two of treatment had many scary moments for Emily. There were so many new people, procedures, machines and areas of the hospital that had not been introduced to us.
One afternoon, Emily was having her first of many gamma scans in Nuclear Medicine. In the middle of the third or fourth song I was singing to her, her grip on my hand tightened and I saw tears streaming down her cheeks. I asked her what was wrong. She responded, “I’m scared.” I told Emily, “I’m scared too. I don’t understand everything that is happening either, but I am here. You will never be alone and we will get through this together. We are going to have as much fun as we possibly can while we are here and we are going to get you better.” At that moment Emily seemed more comforted than at any other time since we admitted. Emily and her Dad had a similar conversation in the days that followed and from then on, I felt like we were all on the same track. Emily’s attitude was brighter, and she began having fun!
We encouraged Emily to explore the rec room and various child life programs that were available to us. It was not always easy. Emily missed her friends and she missed playing outside. Most of all she missed her sister.
One of the biggest challenges during Emily’s treatment and hospitalization was nurturing the relationship between Emily and her sister, Megan. This proved very challenging indeed. Megan and Emily are very close. We had to make sure they had time together, while educating Megan about what was happening to her sister. We had to help Megan understand why Emily was getting so much attention from everyone, and temper the flare-ups of jealousy from both girls. Emily was envious that Megan could continue her relationships with playmates and leave her behind at the hospital. Megan was devastated that her two-parent home was uprooted while Mom was at the hospital with Emily. Honestly, they both had very legitimate gripes! The difficult part was acknowledging their pain, and trying to offer resolutions that a 4-year-old and a 6-year-old would accept.
We were introduced to an organization called “Super Sibs”. This organization caters to the needs of siblings coping with cancer. Megan signed up online at www.supersibs.org. “Super Sibs” sent occasional letters and gifts to Megan. Her favorite surprise was a trophy for being a loving sister! We were constantly reinforcing to Megan, her role in Emily’s treatment. We always acknowledged her anxiety, but remind her that we all needed to work together to help Emily get well. Whenever there was a special event at the hospital, we made sure Megan was there. We also were able to help empower Megan a little by arranging to have her talk to her classmates about what was happening to her sister. We encouraged Megan’s participation in child life activities as well. And made sure she was at the hospital for a sibling group provided by the child life staff. Megan grew very close to the facilitator of that group. We were very grateful for the child life’s participation in sibling issues.
Over the months that followed we learned so much about ourselves, the selflessness of others and the strength of one very courageous 4-year-old and her amazing sister. We count our blessings everyday. Our hospitalization is over now as Emily celebrates her sixth month of remission! We have experienced so much as a family and we have been strengthened because of it.
“If there’s anything I can do. . .”
by Anne Spurgeon
You are probably going to hear those words a lot of times in the next few days and weeks. Your friends and relatives, neighbors and co-workers will be concerned about you and your child, and will want to find ways to help you. Because this is a new experience for you and for them, it may be hard for them to know what to do to help, and it may be hard for you to find ways to ask for what you need.
The list below this one is a list of suggestions for practical things people can do that will make your life easier and your child’s life brighter, and give all those friends and relatives something useful to do with some of their energy and worry.
You might want to print the list and give it to a family member or friend who is looking for simple things to do to help. You can ask someone to make copies of it and distribute it to your neighbors, your child’s teachers or your friends at church or work.
Before you say “I can’t ask people to do things for me!” please remember that one of the kindest things you can do for all those concerned people is to give them the chance to help you. Think of all the times you have visited a sick relative, taken care of a friend’s child in an emergency, delivered food to a family during a difficult period. Doing those things enriched your life, didn’t they? Give the people who care about you a chance to do something that will make them feel less helpless.
Remember, they love your child, too.
Also, find someone (preferably a close relative or a very good friend) to be your “social director.” That person can step in and serve as the contact to get information out to all the people who want to know what is happening so that you don’t have to make or take a million calls each time there’s news. Some people use their “social director” to put updates on their voicemail or Facebook while the child is in the hospital, or to keep family members and others updated through e-mails. He or she can also keep track of the people who say “if there’s anything I can do, please let me know” and coordinate them to bring food, entertain your other children, clean your house, do laundry, bring or send you things at the hospital—or whatever it is that you most need done.
Making the Best of a Hospital Stay
by Debbie Kapke
If we learned anything during our hospital stay it was, how to deal as effectively as possible in that environment. Of course hindsight is 20/20, but we did pick up a few tips that helped us along:
Accept the help that is offered to you.
Undoubtedly family, friends and neighbors want to help in a situation where there is an extended hospital stay. These kind-hearted people really want to help, and many will not know how. In the beginning you may be inclined to want to handle everything yourself. At first we were uneasy accepting or asking for assistance. But we got over it! We soon realized that we needed the help more then we could have imagined.
Ways those around you can help:
mowing the lawn, watering and upkeep of the lawn and garden, snow removal, walking the dog, feeding pets, bringing in the mail, pick-up other children from school, pick-up other children for events and activities
Practical ideas when someone wants to send a gift.
Shortly after the news of our daughter’s hospitalization began to spread, the gifts started to pour in non-stop. By the third day, she was the proud owner of every adorable teddy bear in the state. She had stacks of coloring books and crayons, and we had definitely reached our legal limit for Mylar balloons. We were very grateful for the generosity extended to Emily, and that thoughtfulness really helped during the first few days. However, when you are looking at an extended hospital stay you may be asked for gift ideas for your child after all the stuffed animals and crayons have disappeared off the shelf!
We began to suggest gifts such as:
Favorite non-perishable snack items that were not readily available at the hospital (i.e. Gold Fish crackers, popcorn, cereal, granola bars, candy, canned soups), decorations to decorate the hospital room, a special play date for the sibling children; a movie, ice cream, a day at the park or the zoo. We found time to be the greatest gift of all!
Items to bring to the hospital.
Again hindsight is 20/20, but I would have loved to have the following items on hand from the start of our hospital stay.
A few ideas to have along are:
A notebook (to record names, phone numbers, web sites, medical information, questions you have for your doctor, or things you need to discuss with your spouse) cleaning supplies (you will have times when you will want to disinfect or clean up after a project) thank you notes (to send out in your spare time), a cordless phone (it sounds crazy, but after a few weeks of being tethered to the phone while your child asks you for a snack or some help, it will make sense!), a radio or portable CD player (you can usually get one from child life but they may not have any available when you want one).
Other invaluable tidbits:
Enjoy the few moments you are able to spend with your spouse; they will be few and far between. Even if you take a walk down to the cafeteria for some coffee, try to re-connect as often as possible.
All too soon your normal sleep patterns will be history! If you and your child are used to getting 6 to 8 hours of sleep, you may still be able to get them. Unfortunately, they may not all be together or in a row. Naps will become standard practice! If you or your child needs quiet time, unplug your phone and hang a “Quiet…Napping” sign on the door.
Ask someone in your family to serve as a contact person. Rather than explaining what is going on to everyone you know, ask all your friends and family to contact one person who you will update regularly.
Create a web page to keep friends and family in touch and aware of what is going on at the hospital. www.caringbridge.org is a web site where you can build a web page about your child. It is very easy to set up. You do not need extensive computer knowledge or prior experience in order to establish your page. Update this site as frequently as you are able. There is also a guest book where friends and family can leave messages for you child. That is still Emily’s favorite part about her web site. It was a way she could keep in touch with the people she really missed! Your friends and loved ones will want to know what is happening and this is a great way to keep everyone informed.
Establish a web-based email address (i.e. yahoo.com) so that you can communicate with friends and loved ones from the hospital.
If you or your spouse uses a cell phone, consider getting a second phone added. Most cellular companies now offer an additional phone for $10.00 a month, with calls between the two phones free of charge. This is just one more way for you and your spouse to stay connected. It also allows your spouse to reach you if you are out of your room.
Above all keep an open mind, a positive attitude and a strong and vigilant hold on faith.
by Debbie Kapke
Capital Candlelighters Childhood Cancer Alliance Newsletter, Winter 2005
You are welcome to reprint these articles; just let us know by sending an email to info [at] badgerchildhoodcancer [dot] org