Helpful Hints for parents of childhood cancer

“The cancer world is not one we would have chosen for ourselves, but now that we’re here, we are very thankful that our eyes have been opened, not only to the needs of other families like ours, but also to the amazing hearts of people who just want to help.”

 

The above quote is from Chrissy Love and the Love family members are heroes in my book.  I “met” Emily Anne Love while developing my blog and in looking for other Christian cancer blogs, I came across her’s.  I have “known” Emily and her family almost from her diagnose and follow her progress faithfully.

I asked Emily’s mom, Chrissy, if she would write a list of “Helpful Hints” that she has learned through trial and error.  She is kind enough to pass on this very thorough list for parents who are just beginning to travel this cancer journey and for those who may be in the midst of their cancer journey.

Chrissy’s most recent post on Emily’s blog, emilyannelove, introduces a wonderful photography service to families.   The Gold Hope Project is a volunteer service of professional photographers giving their time to capture precious moments of families experiencing childhood cancer.  The above photos were taken by Mindy Newton, of http://www.mindynewtonphotography.com, a photographer in Roseville, California.  As you can see, her work is excellent.

Thank you, Chrissy, for your time and may this list be a resource for many other families who are now walking in your footsteps.

Helpful Hints for Parents and Caregivers of children with cancer

• Put your marriage first. Don’t let cancer consume you. Hold hands with your spouse and walk this road alongside each other. Provide stability for your children, because they will be floundering.
• When one child is diagnosed with cancer, the whole family gets cancer. Your other children will need you. There will be a period of time when you just won’t be available at home, and that’s okay; but as much as you can, spend time with your other children. They are just as scared as you are.
• Instead of Tagederm, put Press ‘n Seal over the EMLA cream when getting ready for a Port access. It’s not as sticky and will come off the skin easier.
• Wrap silk tape around the Broviac catheters to safety pin them to the shirt, so no curious hands can yank on them.
• Wrap saran wrap around Broviac tubes for bath time.
• If your child is too young to swallow pills, crush the pill into a powder, and put it into a spoon with a drop of water. Have a small treat (like an m ‘n m) and a sip of water ready if it’s a yucky med.
• After a spinal tap, ask the doctor for those extra pink swabs to take home and use as paintbrushes in the bathtub.
• Get a huge, 3-ring binder and put every piece of paper you receive into it. Medication Fact Sheets, Lab Results, Admission papers, etc. You will want them at some point.
• When the hair starts falling out, don’t be afraid to just cut it.
• Always have a To-Go bag ready with: a change of clothes for you and your child, socks/slippers, a book, cell phone charger, water, snacks, toys, toiletries, a favorite movie, anything to make an unplanned ER or hospital trip easier.
• Utilize the resources available, and don’t feel guilty about it!
• Don’t feel bad for accepting help –one day you will be able to reciprocate, and people really do want to help, it makes them feel good.
• Make friends with all the staff involved in your child’s care, including janitors, receptionists, pharmacists, etc.
• Add the pharmacy, hospital, clinic, and other important numbers to your speed dial.
• Keep a list of emergency babysitters in your purse.
• Never, ever promise your other children you will for sure be back in a few hours, especially if you’ve had to call the on-call oncologist for a fever. The chance you are being admitted is far greater than the chance you will go home –even in Maintenance. You will have to break some promises to your children, and it will suck. But if you can prepare them in advance for a possible hospital admission, you will all be better off.
• Some of your other children may exhibit yucky behaviors. Have patience and talk with them. They are probably scared and missing you and their sibling.
• If at all possible, delegate responsibilities to willing helpers: put someone in charge of a Meal Train, ask someone to coordinate babysitting, and assign someone else the task of keeping everyone updated. You will not have the time or energy to handle these necessary tasks.
• Research, ask questions, talk with other families … but ultimately, trust God and your doctors.
• Write down questions as they pop into your head; you will forget them otherwise.
• Smile and be open to other families as much as possible; it really helps to walk the road together.
• Hope, trust, hold onto faith.
• Smile, laugh, and find joy in every moment, no matter how small or fleeting
• Buckle down and hold tight when Steroid Week rolls around; be prepared with favorite snacks, a lot of patience, and some easy ways to break the tension.
• Purpose to spend one-on-one time with your other children and/or your spouse.
• Don’t be afraid to leave the hospital for an hour, or two, or even for a night or day. Your child is in good hands (especially if you can trade-off with a family member), and you need the time at home.
• You MUST take care of yourself. Life will be stressful and scary and tense and chaotic and rushed. But if you don’t pay attention to your body, it will fail you and you will be no good to your sick child or the rest of your family. Sleep, eat well, exercise, take supplements if you need them, go to the dentist and doctor like you normally would; find time to grieve, cry, wail out to God, meditate on the Word of God, pray with friends, and then to smile, laugh, and move on –until you need to cry again.
• As much as possible, don’t coddle or cater to your sick child. Comfort them in their pain, hold and snuggle them as much as you can, but don’t let them get away with tantrums, fits, or selfishness. (Hopefully) There will be a life after cancer, and you’re still raising your child to be a kind, loving, unselfish person. Plus, constant catering to one child usually produces resentment in the siblings. Seek to maintain a balance between caring for legitimate needs and maintaining a normal household.
• When your child’s ANC is low, order your groceries online and either have them delivered or pick them up at the grocery store kiosk.
• Keeps masks and hand sanitizer available for when the ANC is low and guests come by. Obviously, don’t be afraid to say no to guests if the ANC is too low.
• Your child will receive a lot of gifts. A Lot. If at all possible, try to spread the wealth amongst your other children too. Instead of letting your cancer-child bring home her 20^th stuffed animal, help her pick one out for a sibling.
• If your child has a Broviac, teach a few trusted people how to properly care for it (change the dressing, flush the tubes) so you can leave your child for a few hours for a date night or just some time off.
• Invest in a good, accurate thermometer.
• Keep a First Aid kit in your bag with hand sanitizer, masks, gloves, a thermometer, and a set of clamps if your child has a Broviac.
• If your child suffers from constipation when receiving Vincristine, begin giving Colace and/or Miralax 2-3 days before they receive the chemo. It may not completely prevent constipation, but it does help keep the stools softer.
• If Vincristine causes neuropathy, gentle massages and warm baths help with the pain.
• If your child is scheduled to receive High-Dose Methotrexate, and wears a diaper, buy Calmoseptine Ointment from Walgreens or amazon.com. It comes in a white and green tube and works wonders to keep the diaper area protected from sores.
• If your child wears a diaper, when urine needs to be collected, ask if you can stick sterile cotton balls in the diaper instead of letting the nurses attach a bag to the vaginal area. If cotton balls are not an option, ask the nurses to not use the sticky swabs to “glue” the bag onto the skin. It is an absolute bear to get off, and it really hurts a super sensitive area. The bag is sticky enough on its own.
• Never let a catheter be inserted to collect urine. The risk for infection is too high. Don’t be afraid to tell a nurse No.
• When you’re admitted to the ER for a fever, remind the nurses to take a temp reading and collect urine before administering the first antibiotic. The ER staff are wonderful, but they probably don’t specialize in cancer patients and may forget the procedures.
• You are your child’s advocate. Don’t be afraid to speak up.
• If you’re ever uncomfortable with a nurse in the ER, ask for another one. You can always request to have a Pediatric Nurse come downstairs to access the Port or do anything else needed.
• When your child is going through the heavy chemotherapy, give nausea medication around the clock.
• Make copies of the important sheets provided to you by the Oncologist; ie., when to call the doctor, medication list, important phone numbers, etc., and give them to whomever watches your child.