Every family of a child with leukemia needs assistance. Many people have a hard time asking for, and accepting, help from others. However, learning to ask for help when it’s needed and accepting it gracefully will help you get the support your family needs. Many family members, friends, and neighbors will want to assist, but they need direction from you about what is helpful, but not intrusive.
My advice to newly diagnosed families is to say yes to help. It’s very humbling to accept help. Our friends, moms’ group, and church ran a meal train for months after diagnosis. They also dropped off hundreds of dollars’ worth of restaurant cards, so my husband could pick up dinner at a restaurant and not have to shop or cook when our daughter and I were in the hospital (133 days inpatient!). People babysat our young son when I was in the hospital with our daughter and my husband was at work. Learn to say yes and it will change your world.
In two-parent families in which both parents are employed, decisions must be made about their jobs. Single parents who are employed full-time also need to make tough decisions about whether to take a leave of absence from work or cut back on hours to care for their child. It is better, if possible, to use all available sick leave and vacation days before deciding whether a parent needs to leave his or her job. Parents need to be able to evaluate their financial situation and insurance availability; this requires time and clarity of thought—both of which are in short supply in the weeks after diagnosis.
When Garrett got sick, I used up all of my vacation. At that time, our head of human resources called me in and informed me that I now had to take unpaid leave if I wanted to stay out of the office any longer. He then added that in order to continue my benefits, I had to pay “my share” of all benefits costs during this leave. This included insurance, retirement, and other contributions. The weekly outlay was not insignificant. I was dismayed to say the least.
Fortunately, our senior management and common sense prevailed. We came to an informal arrangement where I “made up” lost time by working weekends and extended days when Garrett was home and doing okay. When he was inpatient (most of the first year and the first three months of the second), I would stay with him in the hospital on the weekends (Friday night through Sunday evening) and on Tuesday night and all day Wednesday. This would give my wife a break from the hospital and let me spend time with my son. It worked very well. Pam later calculated that I worked more hours in make-up than I missed for Garrett. The company came out ahead. Every situation is different and every solution will be different in these circumstances. There is only one constant: You will never ever regret the precious time you spent with your child.
You may have some legal protections for your job. The Family and Medical Leave Act (FMLA) protects the job security of employees of large companies who:
- Take a leave of absence to care for a seriously ill child or other family member
- Take medical leave because the employee is unable to work because of his or her own medical condition
- Take leave after the birth or adoption of a child
- Applies to all public employers (federal, state, county and local, including schools) and private employers with 50 or more employees within a 75-mile radius.
- Applies to employees who have worked at a qualified place of employment for at least 12 months, and who have worked at least 1,250 hours during those 12 months.
- Provides 12 weeks of unpaid leave during any 12-month period.
- Requires employers to continue providing benefits, including health insurance, during the leave period.
- Requires employers to return employees to the same or equivalent positions upon return from the leave. Some benefits, such as seniority, need not accrue during periods of unpaid FMLA leave.
- Requires employees to give 30-day notice of the need to take FMLA leave, when the need is foreseeable.
- Is enforced by the Wage and Hour Division, U.S. Department of Labor, or by private lawsuit. You can locate the nearest office of the Wage and Hour Division by visiting www.dol.gov/whd.
Your state government may provide family leave benefits broader than what are mandated by the federal government. For example, California, New Jersey, and Rhode Island have a paid family leave benefit as part of their state disability insurance programs. Other states do not provide paid leave, but do require certain employers to allow more unpaid family leave than the federal minimum. Visit the website of your state’s employment department to find out what rights and benefits you may be legally entitled to.
In Canada, a parent may be entitled to benefits under the Employment Insurance Act. Consideration is provided in the act for a parent having to leave work to care for an ill child. Entitlement to benefits is made on a case-by-case basis. Should a parent qualify, benefits are determined by the number of hours the parent has worked prior to making the claim. For more information, parents should contact the nearest Employment and Social Development Canada office.
Marriage and partnerships
Diagnosis and treatment place enormous pressure on marriages and partnerships. Couples may be separated for long periods of time, emotions run high, and coping styles and skills may differ. Initially, family life is disrupted; couples then must work together to figure out how to proceed. Following are parents’ suggestions and stories about how they managed.
- Share medical decisions
My husband and I shared decision-making by keeping a joint medical journal. The days that my husband stayed at the hospital, he would write down all medicines given, side effects, fever, vital signs, food consumed, sleep patterns, and any questions that needed to be asked at the next rounds. This way, I knew exactly what had been happening. Decisions were made as we traded shifts at our son’s bedside.
I made most of the medical decisions. My husband did not know what a protocol was, nor did he ever learn the names of the medicines. He came with me to medical conferences, however, and his presence gave me strength.
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I was in a new relationship when my toddler daughter was diagnosed with JMML. My boyfriend had just met her a few months before. He bought her an Easter basket and just stole my heart. Soon after Easter, she was diagnosed. He has been with us for bone marrow biopsies, hospitalizations, and numerous appointments. He changed his work schedule to be at her bedside when I couldn’t be. He has been a rock and we are so blessed. It’s now two years later, and we are getting married in three weeks.
- Take turns staying in the hospital with your child
We took turns going in with our son for painful procedures. The doctors loved to see my husband come in because he’s a friendly, easygoing person who never asked them any medical questions. We shared hospital duty, also. I would be there during any crisis because I was the person better able to be a strong advocate, but he went when our son was feeling better and needed entertaining company. It worked out well.
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My husband fell apart emotionally when our daughter was diagnosed, and he never really recovered. He stayed with her once in the hospital and cried almost the whole time. She never wanted him there again, so I did all of the hospital duty.
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My wife took care of most of the medical information gathering because she had a scientific background. But my work schedule was more flexible, so I took my son for almost all of his treatments and hospitalizations. I cherish my memories of those long hours in the car and waiting room.
- Share household duties
We both worked full-time, so we staggered our shifts. He worked 7 to 3 during the day; I worked 3 to 11 at night. He did every single dressing change for the Hickman® catheter—584 changes, we counted them up. Wherever I left off during the day, he took over. He was great, and it really worked out well for us. We shared it all.
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My husband really didn’t help at all. I couldn’t even go out because he wouldn’t give the pills. He kept saying that he was afraid he would make a mistake.
We both coped differently, but we learned to work around it. I didn’t want to deal with “what if” questions, but he was a pessimist and constantly asked the fellow questions about things that might happen. I felt that it was a waste of energy to worry about things that might never happen. I didn’t want to hear it and felt that it just added to my burden. It was all I could do to survive every day. We worked it out by going to conferences together, but I would ask my questions and then leave. He stayed behind to ask all of his questions.
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My husband didn’t have the desire to read as much as I did. However, whenever I read something that I felt he should read, he always took the time to do so and then we discussed it.
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My husband and I have always been a team. We complement the strengths and weaknesses of each other and I think that was the reason we managed to hold everything together. When I was down, he would bring me up. When he was down, I would do the same for him. With the exception of the initial trauma when our son was diagnosed, we handled things in that manner throughout treatment.
- Seek counseling
I went for counseling because I couldn’t sleep. At night, I got stuck thinking the same things over and over and worrying. I ended up spending two years on antidepressants, which I think really saved my life. They helped me sleep and kept me on an even keel. I’m off them now, my son is off treatment, and everything is looking up.
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My husband and I went to counseling to try to work out a way to split up the child rearing and household duties because I was overwhelmed and resenting it. I guess it helped a little bit, but the best thing that came out of it was that I kept seeing the counselor by myself. My son wanted to go to a “feelings doctor,” too. I received a lot of very helpful, practical advice on the many behavior problems my son developed. And my son had an objective, safe person to talk things over with.
Most marriages and partnerships survive, but some do not. Those that deteriorate often have serious pre-existing problems that are further strained by cancer treatment.
My husband had a lot of problems that really brought my daughter and me down. The cancer really opened my eyes to what was important in life. We stayed together through treatment, but we divorced after the transplant. I just realized that life is too short to spend it in a bad relationship.
My husband went to work rather than go with us to the hospital when our son was diagnosed. It went downhill from there. He started using drugs and mistreating us, so we divorced.
Many children diagnosed with cancer live in blended families. Parents may be separated or divorced, remarried, or living as single parents. There may be foster parents, biological parents, step parents, or legal guardians. Communication between involved adults may be open and amiable or it may be strained. It is best for the child when all parents/guardians put their differences aside and work together to provide an environment focused on caring for and supporting the ill child. Counseling is often very helpful.
My son’s dad and I are divorced and we are both remarried with kids. We found it to be helpful and important to have all four parents at all of the meetings that discussed treatments and options, as well as any follow-up meeting where decisions needed to be made. While the forms that needed to be signed for treatments and protocols only needed to be signed by my ex-husband and me, we found it to be especially important that all four of us signed the paperwork. On one hand, it provided a way for step parents to take part in and feel included in something that was so important to a child who they, too, loved, but it also alleviated the potential of someone casting blame later on if treatment didn’t work out in our favor. The doctors gladly added two more signature lines underneath the two signatures that were required.
If the child with cancer has two homes due to a blended family, it often helps to have a journal that goes with the child to each family. It keeps everyone involved up to date. It can contain information about medications given, dose changes, blood test results, and upcoming procedures.
Unfortunately, the diagnosis of cancer in a child can make strained family relations even worse. It is important that all parents/guardians with a legal right to information about all aspects of the illness receive that information and are able to participate in the decision-making process. In some situations, a social worker or psychologist will work with all parties to set up family meetings to make this possible.
We have a blended family (although my husband and I have been married for 20 years now) and have two teenagers in the house. My recommendation is counseling. Both of my teenagers and I see a therapist individually. My husband and I also had to go to marriage counseling at various times during our marriage. Serious illness will put a strain on any marriage. If you have issues before cancer strikes, they will become exacerbated. We have good insurance and it pays for most of our sessions. I paid about 20% out of pocket. It is so worth it. Raising a family is hard work. Add cancer on top of it and, quite frankly, it can become overwhelming. Counseling helps each member of the family have an outlet to express their concerns and worries.
Some parents are single and do not share parenting with an former spouse or partner (e.g., widows, widowers, single parents who adopted children, parents whose former partner is no longer involved). Going through a crisis of this magnitude with no one to talk to or help with daily tasks can leave a single parent feeling isolated, helpless, lonely, and overwhelmed. Also, many single parents are both the sole breadwinner for the family and the sole caretaker of the child with cancer and any siblings. Single parents shared the following suggestions on ways to cope:
- Involve a best friend in making the medical decisions and providing care
- Ask a family member to stay with you at the hospital for support
- Have a friend bring you changes of clothes, bring meals and snacks you can keep in the room or put in a fridge (if one is available), or relieve you for an hour while you take a walk
- Talk with a therapist or other single parent about medical choices and your feelings
It’s really difficult being a single parent when your child is in the hospital, as there is no other parent to take turns sitting with your child, running errands, helping make medical decisions, or supporting you emotionally as you are watching your child suffer. It can feel incredibly lonely! That is when friends become your lifeline. One day we rushed to the ER for what I thought would be a quick visit, and my daughter ended up being admitted for a week’s stay. I had no extra clothes, no laptop, no cell phone charger, none of her comfort items, nothing! And my dog was home alone with no food or way to get outside. Before my phone died, I sent out some texts and a Facebook post to friends, coworkers, and church members. Then I dissolved into tears, feeling totally sad and overwhelmed.
Next thing I knew, church members had arranged to pick up our dog; my best friend went to my home and brought me a change of clothes, my laptop and chargers, my daughter’s favorite CDs and movies, and warm food. Then a food delivery guy showed up at the door of the hospital room with a bunch of Italian food that my coworkers had ordered for me. And by day’s end I had more than 100 Facebook comments from friends, sending their love, prayers, and hopes. At that moment, I realized that though I did not have a partner to share my burdens, I was not alone and never would be. Through my daughter’s entire illness, I was supported by friends and church members. It taught me that it is okay to ask for help; it doesn’t mean you are weak or incapable of parenting alone. Quite simply, being a single parent, full-time worker, and full-time caregiver is really hard, and you cannot do it alone. Don’t be afraid to ask for help! People can be incredibly compassionate and generous when you give them a chance.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups