Elaine:

My daughter Elena diagnosed with Hodgkin lymphoma stage two cancer. And my question would be, as a caregiver, especially in the beginning, where do I go to find the resources? Is there something you can give me, and I need something physical? You can’t just tell me this, because you know you’re so overwhelmed in the beginning, but I need to know basically resources that can help me navigate through this journey, whether that be with things such as transportation, lodging, maybe benefits that I’m entitled to as a caregiver, when I’m not able to work during this period of time, just something tangible that I can go to look at and just hopefully help me navigate through this journey.

Jennifer Adams, LCSW:

Hello, Elaine, and thank you for your question.

My name is Jennifer Adams. I am a licensed clinical social worker and an information specialist with Blood Cancer United. What you’re feeling is very common and completely understandable. Caring for a child who’s been diagnosed with a blood cancer is very overwhelming and can also be isolating. So, one of the most important steps is to lean into support early, that way you’re not navigating this alone. Of course, support can come from family and friends, but you know it can also come from your child’s health care team, it can come from trusted organizations like Blood Cancer United, and it can come from other caregivers who truly understand walking this path that you are currently on.

Equally important is understanding your child’s diagnosis and treatment plan and what to expect, because that can help reduce some of the uncertainty you feel, and maybe give you a little bit sense of control over this situation. Asking questions is always okay, asking for more information or to revisit information that’s already been given is a great idea, and it will lead you toward a feeling of trust and a strong communicative relationship and partnership with your child’s healthcare team.

Connecting with other caregivers is really an important type of support as well. The caregivers can give you just practical guidance and encouragement to know that you can get through this, and again, that you are not alone, and then when people do offer to help, it’s usually easy to accept help in small and practical ways, you know, like meals or errands or childcare that can just ease your day-to-day burden and maybe give you a little chance to recharge.

Blood Cancer United provides a caregiver workbook entitled, “Caring for Kids and Adolescents with Blood Cancer”, and it helps guide you in how to ask for and accept help, and it also provides some information about the importance of self-care. Now I know that self-care is probably the last thing on a mom’s mind, but it’s really something that you need to continue to be the most helpful to your child, you know, just eating decent meals, getting rest, trying to exercise, and maybe even participating in some fun activities are all just the building blocks you need to help keep physical and emotional strength that that you will need over the time of this treatment, the support network that you build early will be there with you now, and hopefully for the through the future as well, so those are just a few helpful ways to settle into the caregiving role, but I also wanted you to know that we are here for you.

Blood Cancer United offers so many caregiver resources on our website, you can search. Our website is Blood Cancer united.org. You will find webcasts and podcasts and videos specifically for caregivers. We host a weekly caregiver chat, which is moderated by a social worker, you may also want to join our Blood Cancer United community, which is an online community where you can just drop in and ask a question and receive support. We also offer both in-person and virtual support groups, and you may also find our Patty Robinson Kaufman First Connection program to be helpful. In that program, you are matched with a trained volunteer who has already walked a similar caregiver path.

If you’re still not sure where to start, I encourage you to call 1-800-955-4572 to speak with one of our information specialists. We are there to listen, to provide education, and to connect you with the support that is right for you. We are available Monday through Friday from 9am to 9pm Eastern time. Again, Elaine, thank you so much for reaching out, and know that you are not alone. Blood Cancer United is here to walk alongside both you and your daughter.