Coping after Diagnosis
You’ve now heard the diagnosis of Wilms. You may be wondering about what kind of things can you be doing [as a caregiver or as a support person for the family].
The following is a compliation of tips and suggestions from various listmembers of the Wilms-Kids e-mail list.
For Parents/Caregivers:
Keep a small notebook in your purse with a pen and/or pencil handy. Write down names/contact info of doctors/specialists, appointment times, shorthand notes of what was discussed [including medical terms known or unknown (don't be afraid to ask doctors how to spell things) so that you can look them up either in a medical dictionary or online]. Write down all medications [names, amounts and times given] as well as date/time/amount of chemos. The days can blend together.
Talk to the hospital social worker. There may be funds and other assistance available through the hospital.
Give a neighbor and/or a relative a key to the home [give out a few to people you trust so that you can always have a back-up person either grab things from home or take care of things at home for you].
Have an overnight bag packed for both child and caregiver in case of hospital stays for a few days. If you don’t always take the bag with you to the hospital, then keep it in an easily accessible and highly visible place in the home [like near the front door] where a relative or friend can grab it for you without having to go look throughout the home.
Some things to pack:
toothbrush, toothpaste, floss, shampoo, conditioner, brush/comb, at least two changes of clothing [*comfortable*], slippers, PJ’s, underwear, socks, deck of cards, crayons and activity books, small box of laundry detergent [some hospitals have caregiver access to washing machines and dryers].
Optional is to have a small cooler handy to put drinks and snacks in.
At-home supplies [and on the go]: surgical masks [adult and child size], box of disposable gloves [latex or vinyl], extra thermometers, syringes for giving oral medications, lots of hand sanitizer [Purell] (you may want to have some handy with you at all times), antibacterial hand soap, Emla cream [or something similar], Press ‘n Seal, adhesive remover.
Optional at-home supplies: Pediasure, Polycose Powder, a laxative approved by the oncologist [such as Senokot, MiraLax, et cetera], an anti-nausea medication approved by the oncologist [such as Zofran].
Car/traveling supplies: large Ziplock baggies or a bucket, package of tissues (in case the child vomits in transit).
To deal with dry air in hospital, you might want to keep in the car: chapstick, hand lotion and/or skin moisturizing lotion, bottled water, mints or hard candies to suck on.
Caregivers should take turns caring for the cancer child [i.e., being up in the night, going to the doctor, et cetera] if at all possible. Also remember to tell your spouse that you love them and/or how much you appreciate them.
Portable games/media devices [such as DVD players] may help pass time waiting in the hospital. Portable music players can drown out various hospital sounds. Small portable answering machine to hook up to room phone so that conversations with oncologists/specialists don’t have to be interrupted to answer the phone.
Leave info on the refrigerator, like pet instructions, school bus times, school calendar showing any special days, for children left with someone else.
Make sure siblings’ teachers understand the situation at home.
Post a “wash hands” sign on the front door.
Encourage your child to eat. Set a good example and don’t forget to eat something yourself!
Talk to the hospital nutritionist and get some ideas on what foods would be best to help put weight on your child. If supplements are suggested [such as Polycose Powder], the nutritionist might know if you can get them at cost through the hospital or suggest where an affordable source would be.
Some suggestions on how to help kids deal with diagnosis:
A jar with pebbles/marbles in them, with as many treatments your child needs. After every treatment, let them throw the pebble away. As time goes by, they will see less and less pebbles.
Read books about cancer with your child if he/she is old enough to understand. The hospital resource room may have some materials for both child and you to read. Contact Candlelighters for access to other reading materials [such as (for caregivers) the book by Janes-Hodder & Keene called “Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers”].
Let them play "cancer." Dolls with removable hair, doctor kits, "doodle" dolls [they make doodle bears, girls and even monsters, so you can find one for either boys or girls; the patient can draw scars, ports, et cetera, on it and it's washable, so they can start all over again].
Try and have the same childcare and routines for siblings.
Personal website [CaringBridge.org or CarePages are free]. Set up a website for the child and post updates in one place. Pass out the URL to friends and family so they can check in often to see how things are going. This frees you up from having to repeat the information over and over.
Wilms-Kids listserv on Acor.org. An e-mail discussion list for parents/caregivers of children who have been diagnosed with Wilms.
Please DON'T:
Give up hope. Be sure to maintain a positive attitude.
Forget to laugh. Laughter can be good medicine for everyone’s soul.
Display anger or argue with hospital staff in front of the child. Always take concerns outside. Little kids don't want to see adults disagree. It adds to their stress.
Be afraid to seek assistance from medical professionals for things like anxiety, depression, sleep problems, et cetera. Be sure to get a check-up and care for your own health [stress can raise blood pressure, for example].
Think you have to do it all on your own. You have friends and family that want to help. You honor your relationships with them when you ask for assistance. Tell them exactly what you need [just because they want to help, doesn’t mean they know what it is they could be doing to help].
For Relatives/Friends:
Offer to clean house. Coming home to a clean house is great!
Offer to do the laundry.
Offer to buy groceries and bring them to the house. Preparing a bunch of quick and easy meals will be a lifesaver to the entire family. Parents are often in hospital (or traveling to visit spouse and child in hospital) and don’t always have time (or presence of mind) to go grocery shopping, nevermind actually cook a meal.
Offer to help with yardwork and/or take care of home when family is away [clearing snow, making sure pipes don’t freeze, cutting grass, watering plants, et cetera].
Offer to help set up a bank account or do fundraising where donations can be made for things like parking, prescriptions, rent/mortgage (many families end up losing one or both parental incomes for a time).
See if your workplace has a leave donation program to help employees facing family emergencies. Coworkers may be able to transfer leave to the parent.
Gift cards for food (restaurant and/or grocery stores), pharmacies, department stores, et cetera.
Childcare. Offer to take care of siblings on clinic/appointment days. Offer to care for children so that a parent can continue to go to work.
Pet sitting on clinic/appointment days.
Offer to be an “information coordinator.” Update a personal website so that others can know what is going on and/or have a list of phone numbers that you can call and keep folks updated on what’s going on [thus freeing up the family from constantly being on the phone].
Please DON'T:
Visit with sick children or children who are not well. This goes for you too: if you’re not feeling well, please don’t come to the house. Germs can be deadly to the immune compromised.
Visit with children receiving immunization shots (goes for you too).
Call all day on clinic/appointment days to find out how things are. It’s a long exhausting (physically and mentally) day.
Just show up at the door. Call before you come over. It may be a bad day for visitors.
Wait for the parent to call and ask for help. Call and offer it! [Likewise, the parents should not be afraid to ask for help.]
Buy a gift for the cancer child and not get anything for the siblings. Siblings are often overlooked during this time; they are going through a hard time and have to go without one or both parents. Siblings could use a little extra attention and concern during this time.
Take your friend’s/relative’s mood personally [should they seem irritable or distant]. They are scared, angry, confused, sad, worried, exhausted and probably haven’t eaten. When you ask them how they are doing and they answer “fine,” they are lying. Everything isn’t fine. It’s just that it’s so much easier and quicker to answer “fine” then to give the real answer of “We managed to get through yesterday, not sure how we did it because I keep having these moments when I just want to cry [and sometimes I do] and we’re so scared about what the near future has in store for us. I don’t know how this could have happened in the first place and I struggle with terrible guilt that somehow I either caused this or could have done something sooner so that this never would have happened. My heart breaks in two every time I hear my child whimper or cry and I feel like a monster whenever I have to bribe, threaten, physically restrain my child to get something done which frightens and/or hurts them at the hospital. I wish this would all go away. I don’t know how I am going to manage to get through the rest of today, and I don’t really dwell on tomorrow because ...”
Other webpages like this:
Ped-Onc Resource Center Do's and Don't's
How to Help the Family of a Child with Cancer
Submissions, suggestions, links and comments for this site are always welcome!
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