tips and resourcesYour Child Has Been Diagnosed with a chronic illness. Now what?

Immediate help after a diagnosis

How do I spread the word?

Phone calls, texting, and emails can be overwhelming—although everyone wants to be kept in the loop, there is not enough time in the day.

Solution: CaringBridge
Caring Bridge allows you to create a free, personal and private website that connects you with your family and friends. Create a site as private or public as needed. You are in control of how much information is shared

How can I prepare myself for my child’s first appointment?

MD Anderson Cancer Center has prepared a wonderful resource for information on what to expect at the firs appointment, and how to best prepare for it beforehand. Learn more

How do I stay organized?

Scheduling everything will get complicated. A monthly, weekly, and daily calendar will help in visualizing the road ahead and establishing organization in a chaotic time.

How do I manage all the information?

Take notes in a notebook or on an Ipad to keep information close and ready at hand
Examples of information that you may want to keep track of:
  • Your child’s care team—names, roles and contact information
  • Important numbers— Social Security number, Hospital medical ID number
  • Medications—Names (brand or generic) and dosing instructions the
  • Surgical history
  • Drug allergies/Other allergies
  • Conversations—Information learned and who it was learned from

How can I handle all this myself?

Remember, you can always ask for help! Find a friend who wants to help that can serve as a ‘project manager’ that you will speak with daily and communicate your needs. The manager will serve to assign tasks to those who want to help.

What is the role of a child life specialist in my child’s treatment?

Child life specialists focus on the psychosocial needs of children, collaborating with parents to:
  • Ease a child’s fear and anxiety with therapeutic and recreational play activities
  • Foster an environment of emotional support
  • Encourage understanding and cooperation by providing non-medical preparation and support for children undergoing tests, surgeries, and other medical procedures
  • Advocate for family-centered care
  • Engage and energize children and families by coordinating special events, entertainment, and activities
  • Consider the needs of siblings or other children who may also be affected by a child’s illness or trauma
  • Provide information and resources for parents and members of the support team

What options are available for my child to continue in school?

HISD offers a number of virtual schooling options for students to complete courses online. Learn more

Life with Chronic Illness

How can I best prepare for emergencies and unexpected hospital trips?

“Always be prepared”... Be ready at a moment’s notice by having a hospital bag already packed:

Fill it with all of the necessary items to keep your child comfortable. Here are some common and practical items you may consider packing:
  • Fluids to keep hydrated: Gatorade, water
  • Snacks
  • Book, portable electronic book reader, magazines, catalogs
  • Cell phone
  • IPOD
  • Blanket
  • Sweater, warm socks, comfortable slip-on shoes or slippers
  • Notepad or tablet to take notes and save important information
  • Laptop computer
  • Photographs and personal items to decorate the hospital room
  • Day planner for scheduling your appointments

Advice from someone who has been there:

  • Breathe, step away, and go outside for 5 minutes after a doctor visit
  • Always bring warm snuggly socks to the hospital
  • Turn a hospital room from depressing to inspirational with personal photos and decorations
  • Always carry a list of your child’s medications with you

I can’t do it alone: Tips for friends and family

Extended hospital stays, twice weekly clinic visits, the side effects of chemo and the constant possibility of unexpected hospital admissions mean stress and exhaustion for everyone.

If someone you know has a child being treated for cancer, there are a lot of ways to help. Here are some tips and ideas based on shared experiences:

1. Don’t just ask; do. It’s nice to say, “Please let me know if there’s anything I can do.” But it’s easier to accept help when a concrete offer is made: “I’d like to bring a meal, if that would help. When would be the best time to deliver it?” or “I’m free this Saturday night. Want me to come babysit so you can have a night out?”

2. Give a gift card. It may seem impersonal, but it’s not. Having a child with cancer can be a major financial strain on families, between related expenses (parking, co-pays, take-out food, etc.) or a parent having to work less or not at all. Gift cards for household expenses like groceries, pharmacy and purchases at places like Target or The Home Depot can be a huge help.

3. Don’t forget siblings. Cancer is just as disruptive to the lives of “well” children as it is to their brothers or sisters with cancer. Siblings grapple with jealousy, fear, anger and a host of other emotions. If you want to send a gift for the child with cancer, give something equally special to his or her siblings. Not only will the siblings appreciate it; the parents will, too.

4. Help later. While it’s natural to want to help immediately after a child is diagnosed, don’t forget that cancer can be a long haul. There may be months or even years of treatment and hospital stays ahead. And while cancer quickly becomes the “new normal” for families, the emotional and financial strains remain.

5. Say something. There are other ways to make a difference besides sending gifts or making meals. Sometimes just a card, an email, or even just a phone call to say “I’ve been thinking about you.”

Tips from friends
and angels:

To all angels and friends of AIDAAN.org, please help us by submitting your own tips and resources that make the hospital stay easier for you and your loved one(s). We welcome all your suggestions; the funny ones, the silly ones, and especially the ones that bring a smile to your face!

iPhone/iPad Apps for coping with cancer

iChemoDiary   |   Cost: Free
iChemoDiary helps you to track chemotherapy appointments, manage medication schedules, and record side effects and symptoms that you may experience. The app allows you to generate reports over a designated time period to provide to your doctor as well.

CaringBridge   |   Cost: Free
CaringBridge is a social networking site for people to connect with others in treatment for similar conditions or diseases. It allows you to post health updates and any other information you would like to family and friends. It is perfect for those times when you get test results back and don't feel up to calling your 10+ friends and family members who are all anxious to hear the results.

My Medical   |   Cost: $1.99
The My Medical app is a mobile mini-database that stores all of your medical information, from allergies to previous surgeries.

iHealth Log   |   Cost: $1.99
iHealth Log was created for people with chronic diseases and effectively caters to the their needs. Track appointments, test results, lab values, and even weight with this multi-purpose app. Use the diary function to record questions you may think of to ask the doctor at your next appointment.

ExpressWell   |   Cost: $.99
ExpressWell allows you to organize medication information including what medications you are prescribed, the dose, and when to take them.
Twitter AIDAAN.org on LinkedIn AIDAAN.org on Facebook