Wisdom and Advice from ALL Rally Moms | Part 1
If you’re reading this, someone you know, it might even be your child, may have been diagnosed with acute lymphoblastic leukemia (ALL). As shocking as it might be, Rally Foundation wants you to know that you are not alone. We are here for you.
We know that you have a thousand questions, so we went straight to the moms who have children with ALL to hear their personal advice and observations.
This is Part I of the wisdom and practical advice from three Rally ALL moms: Amy, Brigitte and Nour.
Amy: This is a marathon. Everything is overwhelming in the beginning, and people, including doctors, will tell you that the next phase is easier. They aren’t lying, but honestly, it doesn’t often seem easier. Two to three years is a long time. The phases come and go, and each has their own ease and their own challenges.
The treatment plan is a guideline. You cannot plan around treatment. It is more common to have chemo holds and delays than it is to actually follow the treatment plan. Expect this and know that it is normal and not an indication that treatment is not working properly.
Hold loosely to your plans. Fevers, holds in treatment, unexpected hospital stays, etc. will impact your life in unpredictable ways that you cannot plan for at all.
Brigitte: I recommend getting connected with other cancer parents who have been where you are. Many of us are open to walking beside you through your journey.
AS: Find one friend who you can be completely honest with, a friend that will keep calling you even when you never respond.
Nour: Connect with the social worker ASAP. You may have great insurance. You may have an emergency savings account. Connect with them anyway. They have so many resources that can help on this journey whether it’s financial or community or for your family.
Friends Want to Help:
Brigitte: Be really honest with people who ask what you need. If you don’t, you will get things unneeded. For our family it was food and gas cards. And having people do things for us, like watching our other child, mow our grass and feed our animals.
Nour: Say yes. All those family and friends offering food, laundry, play dates for siblings, work schedule, etc. Say yes to all of them and allow them to take care of the things that aren’t your priority but will add stress — knowing your to-do list keeps growing while you’re at the hospital. You WILL have support, maybe even from strangers. Embrace it and let it be the most amazing surprise during this journey.
Check Rally’s website for Part II of this conversation. Some of these remarks may be enlightening not only to ALL parents but to parents and families of many other kids fighting childhood cancer.