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. 

Your fear and pain is my disguise

Over the summer I have posted various chapters from my blog book, PTSD and Cancer:  Lost, alone and afraid.  Many people have asked me what my response has been from those who have either found my blog via Face Book or through search engine terms, ie. “googling.”  This isn’t a super stat blog but it certainly is serving it’s intended purpose.

I am receiving notes and emails from individuals thanking me for posting an honest, open and raw account of depression and cancer – Christianity, depression and cancer.  Just as I had hoped, survivors are finding through my story that what they are experiencing post-treatment is not “unnormal” and that they aren’t “going crazy.”  In reading their stories, my heart hurts for them as I relive what they share with me.  For some survivors, I wish I could hug them and hold them and let them cry and later talk, talk about what we feel we shouldn’t be talking about because “everybody tells me I should be thankful and grateful that I am cancer free.”

My continued prayer is that in a survivor’s quest to learn more about post-treatment depression they will find my blog and read my story and find the hope and peace they so desperately are looking for.  Yes, our strength comes from Christ our Savior, and in my weakness called depression He was always there whether it be through a secular counselor, a book, a web site or a cancer support group.  I really was never alone and I am here to tell you – you are really never alone.

The following chapter is what I might consider one of my most provocative chapters.  I hear often, very often, how once a patient is done with treatment their life fills with busyness, busyness to the point of distraction.  Is it better to distract yourself after treatment pushing your cancer experience behind you or should you stop yourself and reflect on what you just went through and allow the emotions to surface that you so successfully buried?

January 5, 2010

I didn’t think I would make an entry so soon.

As I was writing this morning, my writing revealed a truth.  I was disguising my pain and fear by “helping” other cancer patients and survivors.  I was “helping” them by listening to them and talking with them about their suffering.  I made myself available to them because, subconsciously, I desperately wanted them to answer my questions about my suffering.

Since exposing my true weakness and becoming more transparent with people, some have questioned my decision to completely drop out of “things.”  I know volunteer work places attention on others and not self.  After this morning’s journaling, I know I am in the right place by not filling my time with “things” but taking the time to explore me.

January 5, 2010

I am accepting my cancer, it did happen and it wasn’t a cold virus and over in 10 days. It was an unbelievably surreal, dreamy time in my life. I might mention that again and again as I accept this illness.

So far in a year and a half, I haven’t quite found myself. I came home from SLC a much spiritually deeper person. My one true anchor through all my treatment was my faith and hope in Jesus Christ. Once home and back into a routine, that intimacy and concentrated time was interrupted as the early morning turns into a day of activities.

The landscaping of our yard was a great distraction from having had cancer just months before. To be outside with growing strength and renewing energy, the sunshine and tackling one acre of “dirt” was a healthy challenge for me. Feeling strong and working on this project was like spitting in cancer’s face.

After my SCT, I expected to spend the first year of recovery fatigued and weak. I was shocked at how quickly I recovered and how my strength and stamina seemed to grow stronger daily. I was doing pretty well and I was feeling pretty well.

Literally, when we just finished the landscaping and we were enjoying the beauty of our labor, the flowers and shrubs, and the bounty of our labor, the cherries, I fell off the ladder and broke my leg. I had a lateral break in my tibia, my tibia plateau decompressed and I tore my ACL off of the bone. Surgery rebuilt all that was destroyed. My leg was reconstructed with plates and pins.

In all my years, I never felt such pain. It was overwhelming. And not only was it overwhelming, it was exhausting! The fatigue hit me like a Mac truck. The great majority of my healing was from the end of July to the end of October. The ache or discomfort and my limp lessened all through November and in late December, I noticed what remained was a slight limp.

This accident and recovery distracted me from my cancer. My thought and energy was on my leg. Toward the end of my healing, I began to spend more and more time thinking about my cancer.

I was in complete remission and my leg was better so I began to focus my attention on other people who had cancer – I had this driving passion to help them.  I met with cancer patient/survivors personally.  Most often they wanted to hear about my experience. I also attended our cancer support group and actively contributed to our discussions.

If I couldn’t physically be with people, I participated in on line discussion forums and I volunteered to be a telephone mentor through the Bone Marrow Unit at Huntsman. I was distracting myself again, all my thought and energy was expended on other people. It was an odd time and one I am now exploring.

I think I was superimposing my fear and pain on to others by disguising it as “helping” them get through their fear and pain.  In an odd way, I wanted them to answer my questions about me.  I wanted to ask them three questions. One, if the cancer recurred how would you determine what action to take? Another type of chemotherapy that makes you feel sick and crappy or another form of treatment? How would you choose quality of life verses quantity of life? Dying more quickly and naturally or a prolonged death being kept alive by drugs and transfusions? Two, how/when do you know enough is enough? (kind of the same as one) And three, discuss the reality of death and dying. I thought I was being helpful to them but really this was all about me, me and my curiosity and my grasping for answers to these questions.

I believe before my anxiety and stress manifested, I was becoming more and more obsessed with these issues and perhaps even a little manipulative with others. I wanted to make my problem their problem, I wanted them to answer my questions. I wanted answers and really nobody could give me answers. As my frustration grew, my doubt grew; I began to feel guilty and I felt ashamed. I realized I was not as strong as I thought I was and I had not overcome the psychological aftermath but was feeling the vortex pull me down again. I wanted answers but nobody could give me answers.

Why, after a year and a half was I still suffering? Shouldn’t I have overcome all of this by now? Does anybody else struggle like me? Do they think of these things? Doesn’t anybody talk honestly and openly about these issues or do we always have the “hope” that possibly some new drug will come along to save us? Stupid questions, selfish questions especially when there are women I know dying from cancer. Stupid, selfish questions – I should be grateful I am alive and in complete remission.

And I broke. I am not strong, but I am broken and afraid. I hurt and there is this deep, deep pain hiding in me.

 

Childhood cancer and Post Traumatic Stress Disorder

In December, I wrote an article highlighting the courage of a popular pastor’s account of his young daughter’s sudden and unexpected death.  That article is my all time most popular – and, even though I write about cancer, at least little Lenya’s story directs readers to my blog and perhaps they will take a mental note that somewhere in the great blogging sphere there is a blog about Christians and cancer.

WordPress keeps daily statistics of the number of readers, what country they are from, what search engine terms they use to search on-line on a specific topic and how many hits that one topic receives; that’s why I know Lenya’s story is my most popular.

Another search engine term that is popping up more and more is childhood cancer.  I am pleased that my blog can be a source of information for parents of children with cancer.

I can not feel the emotion of parents with children suffering from cancer nor understand their guarded hearts that bounce from hope to despair probably on a weekly basis, maybe even daily.  (Hourly?)  I can not even begin to know the unspoken thoughts as parents snuggle up to their little one as she sleeps night after night in the overwhelmingly large hospital bed . . . talk about a feeling of helplessness . . .

I introduced little emilyannelove last year.  She is the little girl that was diagnosed with childhood leukemia before she was even two years old.  She has done well and is doing well.  However, even in doing well there are setbacks that can happen and have happened to little Emily.  As of this writing, the doctors are still testing her for the bacterial infection that caused her to go into septic shock.  She is in the hospital, today is day 7.  The doctors will keep her there until they find the specific infection in order to create the correct antibiotic cocktail to knock this bug out.

little Emily back in the big hospital bed

Chrissie, Emily’s mom, made an entry in her blog on March 31, 2013.   Chrissie was sharing how well Emily is doing, her continued chemotherapy maintenance and how family life is returning to “normal.”  But she finished that one paragraph with a sentence that made my heart ache for her.  “I, personally, have struggled with my emotions and thoughts recently regarding Emily’s future -I may write about it soon -but there are many days when our family feels almost normal.”  Chrissie hasn’t written that entry yet.

This summer I started writing about Post Traumatic Stress Disorder and Cancer, PTSD for short.  I am sharing my story of PTSD and cancer and how lost, alone and afraid I was.  (click here to read my blog book, PTSD and Cancer: Lost, alone and afraid.)

I am taking a break from  my story because Chrissie’s sentence has been sitting in the back of my mind since March.  Earlier this month, another mother of a young daughter with leukemia, ALL, wrote an entry that leaves a heavy weight on my heart, too.

HealingMaya is a well written, raw account of Maya’s journey with cancer.  The story tugs at my heart because it is really more of the mother’s story in watching and caretaking her daughter through cancer.  Fortunately, Maya is in the maintenance phase but that doesn’t mean a mother’s worry is over; now the worry changes into wondering what the future will bring.

These two stories, the moms’ unanswered questions and fear for their daughter’s future motivates me to dig into researching and understanding PTSD and childhood cancer.  Can a young child have PTSD?  Or is a parent of a child more apt to suffer from PTSD?

My research and resource findings will follow shortly . . .