The Diagnosis Week Playbook: What to Pack, Who to Call, What to Stop Doing

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Written By Dina Besic

If you are reading this, you have just heard a word you did not expect to hear about your child. Leukemia. Lymphoma. Cancer. Tumor. Mass. Something.

I have been where you are. My son was diagnosed with acute lymphoblastic leukemia when he was two. The first week is a blur for almost every cancer family I know. You are trying to absorb impossible information while also figuring out where to park, what to pack, who to text, and whether you should eat.

This is the playbook I wish someone had handed me on day one. It is not a treatment guide. Your oncology team will handle that. This is a logistics and survival guide for the first seven to ten days, when you are still in shock and the medical system is moving fast around you.

Skip around. Read what you need. Save what you do not. Come back tomorrow.

What to pack

You are likely about to be in the hospital for at least one inpatient stay during diagnosis week, sometimes longer. You may not know yet how long. Pack like you are staying three to five days, even if they tell you it is one night. They are usually optimistic.

For your child

•       A favorite stuffed animal or comfort object from home. The smell of home matters.

•       A familiar toy. If your child watches one show, bring something connected to it. Hospital child life specialists often hand toys to children at admission, but the toy from home is the one your child knows.

•       A blanket from your child's bed. Hospital blankets are thin and scratchy.

•       A tablet loaded with downloaded shows and games. Hospital wifi fails. Download offline before you leave the house.

•       A long phone charger cord. Hospital outlets are far from beds.

•       Two changes of clothes, more than you think. Spills happen. Procedures happen. Bring extra socks.

•       Diapers, pull-ups, or other care items appropriate to your child's age and routine.

•       Lip balm. Hospital air is desperately dry.

For you

•       Your phone charger and a portable battery if you have one.

•       A small notebook and pen. You are about to be told a hundred things. You will not remember most of them. Write down the medications, the names of the doctors, the schedule for the next day. You will refer back to this notebook for years.

•       A water bottle. You will forget to drink.

•       A hoodie or sweater. Hospitals are cold.

•       Snacks that do not need refrigeration. Hospital cafeterias get expensive fast.

•       Your insurance card and your child's, your driver's license, and your child's social security card if you have it accessible.

•       Toiletries. Toothbrush, deodorant, contact lens case if you wear them. You may not get home for a while.

•       A book or magazine. There will be five-minute pockets when you cannot use your phone because the news will pull you under. Print is sometimes safer.

For other children at home

•       If you have other children, pack a go-bag for them at a grandparent's house or a trusted friend's house. Include their favorite stuffed animal, two days of clothes, the comfort item they sleep with, the snack they will eat, and a recent picture of you and them together. Stability matters even when the family is separated.

Who to call

In the first day, call as few people as you can manage. You do not have to broadcast yet. You have time. The instinct will be to text everyone you know. Resist it. You will be better served by calling three to five people well than by texting fifty people poorly.

Your inner circle

•       One or two close family members. The ones who can be in motion within an hour.

•       One or two close friends. The ones who know how to be helpful without being asked what would help.

•       Your spouse or partner's inner circle, if different from yours.

Your work

•       A single message to your manager. Brief. Something like, “My child has been diagnosed with a serious illness and I will be out of work indefinitely. I will follow up with HR about FMLA paperwork as soon as I can.” You do not have to explain more than that. You will not be in a position to manage your employer's emotional reaction this week.

Caregivers for your other children

•       Your daycare provider, your nanny, your child's school. They need to know your child will not be there for a while. They do not need to know everything. “Family medical situation. Will follow up next week.” is enough.

Your medical and insurance team

•       Your pediatrician. Call to let them know. The pediatric oncology team will eventually loop them in, but a call from you gets the chart in motion.

•       Your insurance company. Ask them to confirm that the hospital and the oncology treatment team are in network. Ask if they offer a case manager. Take down the case manager's direct number.

•       A hospital social worker. The pediatric oncology department will have one. Ask the team how to reach them. They are not optional. They are the person who connects you to financial assistance, transportation programs, housing if you need to be far from home, sibling support, school coordination, and more nonprofits than you can imagine.

Who to wait on

•       The internet. Do not Google survival statistics. The numbers you find will not reflect your child's specific situation, and you will lose entire nights to fear that is not yours to carry yet. Wait for your oncology team to walk you through the actual picture.

•       Distant family and friends. They will reach you when you broadcast. You can broadcast in week two. You do not owe anyone an explanation in the first 48 hours.

•       Anyone who wants to tell you about their cousin's friend who had a similar diagnosis. These stories rarely help. You can listen later.

What to stop doing

Some of what you have been doing as a parent and as a person you are about to need to put down. Not forever. For now.

Stop trying to be perfect at your other roles. Your professional reputation will survive. Your friendships will survive. Your house being a mess will survive. Your child needs you to be present. Everything else can wait.

Stop responding to every text. Set up an auto-reply if it helps. Something like, “Going through a family medical situation. I will get back to you when I can. Thank you for your patience.” Send it. Save your replies for the people you have actually chosen to engage.

Stop apologizing for canceling. You are canceling because your child has cancer. The people in your life who matter will understand. The ones who do not understand are providing useful information about who to keep close.

Stop comparing your child's case to other cases. Every cancer is a thousand different cancers. The treatment protocols, the prognoses, the side effects, the timelines, all vary. Your oncology team will tell you what you need to know about your child specifically. Other families' stories can help eventually. In week one, they will hurt more than they help.

Stop reading prognosis statistics at 2 a.m. The numbers in articles online are decades old, often unrelated to your child's specific situation, and read in the dark they are devastating. If you need numbers, ask your oncology team to tell you what the numbers are for your child. They will. The honest answer is almost always more hopeful than the internet's average.

Stop trying to make everything normal for your other children. They know something is happening. Pretending otherwise will not protect them. Tell them in age-appropriate language that their sibling is sick, that the doctors are helping, and that you love them and will keep them close. Then let yourself off the hook of being a normal family for a while. You will be a new kind of family soon. There will be time.

What I wish someone had told me

A few things that nobody told me, that I want you to know.

The first week is the worst week. It is not a representative sample of what is coming. You will get steadier. The hospital will become navigable. The team will become familiar. You will develop a system. It will not be the system you wanted, but it will be a system, and a system is survivable.

You will not feel like yourself for a while. That is not a failure. That is what happens when a person is asked to receive impossible news and also do logistics. Your nervous system is doing both at once. Give it the slack.

You are allowed to ask the same question more than once. Doctors and nurses repeat themselves all the time. They expect it. Write down the answers. Ask again tomorrow.

You can love your child without believing you can hold it together. The holding-together is not the love. The love is the fact that you are in the chair.

There are people you have not met yet who are going to walk this with you. Other cancer parents. Nurses who will remember your child's name. Social workers who will pull strings. Nonprofits that exist for this exact moment. You are not building this from scratch. There is an entire infrastructure waiting to hold your family. You just have not met it yet.

If you need us

Maxwell's Toy Box exists because we walked this hallway and we wanted families behind us to find some of the doors already open. If you are in your first week and reading this, please reach out to our team at maxwellstoybox.com/family-support. We can connect you to gas cards, grocery cards, toys for the child in treatment, a Newly Diagnosed Family Bag, and other families who get it.

You do not have to know what to ask for. You just have to ask.

You are not alone in this. Not anywhere. Not even on the worst night.

Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛

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