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. 

“Brave little soldiers” and “taping the door shut” . . . where do I fit in in all of this? (having a sick sibling, through the eyes of a child)

I have a very young friend who hurts, she can’t really talk so she doesn’t use words to describe her pain, she just says, “Ow.”   Little emilyannelove has childhood leukemia and she is only, barely two years old.

“We all know that she is uncomfortable, even in pain. Her body is covered in bruises and she rarely eats any solid food. She has periods of high spirits in which we all get to laugh and play but in the back of all our minds, we know Emily is a very sick girl who is fighting so very hard to get healthy.”  Emily’s Auntie Plum writes for her, Auntie Plum uses words that Emily can’t express.

Auntie Plum wrote today and my heart aches for emilyannelove and my heart aches for her mommy and my heart aches for her daddy and my heart is sad for her brothers and sister.  If I could just scoop them up and mend their wounded, worried hearts . . . If I could surely say, “It’s gonna be just fine and Emily will get well.”

Can you image being a parent of a critical ill baby?  That’s really what Emily is, a baby, ok, a toddler.  Can you feel the pain that Emily’s mommy and daddy had when they heard their last born baby girl has leukemia?  I can’t even imagine, my heart can not absorb the depth and drowning feeling that my baby is sick and in order to have a fighting chance she will need chemotherapy – and there are no guarantees that medicine will “cure” my baby of cancer.  Can you empathize with them?  Have you felt their pain?  Have you had a critically ill child?

I am so sorry for Emily’s discomfort, Mom and Dad’s weariness and brothers’ and sister’s “bravery.”  I was so moved yesterday by the most recent post that it brought back childhood memories.

“This effects no one more than Emily’s immediate family. Her siblings, who may not fully understand what is going on, definitely know that Emily is struggling. When Emily and Christina had to go to the hospital at the last minute this past Thursday, Adam taped shut the front door and made a sign indicating the hospital was in the back bedroom – his own quiet way of saying he is tired of his momma and sister having to go away so often.”

The italics are mine because I know Adam’s pain and in reading that sentence my memories were triggered.  There is a need and an importance in informing caring adults about the siblings of a brother or sister who is critically or traumatically ill.  As children, we have a voice and we want to use our voice but in our lack of understanding and the need to be “big girls and boys”, we hold back our fears and worries.  Maybe this post will bring to the attention to the adults that surround the siblings the importance of coming alongside them, too.

the Love family on a little get-away

I wrote to Auntie Plum . . .

“I really wish I could say it is going to get better soon.   Sometimes it seems darkest before the sunrise and day light.  I am hoping that this proves true for the Love family.  I just can’t imagine having a sick little one with cancer.  As an adult, it was rough.  I could use my words to describe my pain and the nurses would work with me in finding the right relief for the pain.  I could also describe my worry and fear, my weariness and weakness; all of you have to fill in the blanks for Emily.

I am very empathetic with the siblings.  I didn’t have brothers with cancer but I had critically ill brothers.  My brother, Scott, was diagnosed with severe asthma when I was 5 years old.  From that age until around maybe 12 years old, life was hectic, sacrificing and at times, confusing.  As the oldest and big sister and as the “well” one, my little kid way of “helping” my parents was to keep my worries and “this is unfair” feelings to myself.  I became the big girl, self sufficient and self entertained sister and daughter.  As a girl I didn’t understand.  (I was going to finish that sentence with what I didn’t understand but that is about it, I simply didn’t understand.)

I had to give up many things and the one love that broke my heart and the memories can still make me cry today is I had to give up my horse, Lady, my tie to my dad.  I was at an age where my dad and I could start riding together but because my brother’s asthma was so bad, I had to sell my horse.  I’ll never forget that day.

All this to say, the Love family is so blessed to have aunties and uncles, cousins and grandparents surrounding them and living right there close by.  Please I’m not trying to meddle but I understand why little brother “taped the door” shut.  I encourage all of you to spend time with your nephews and niece – alone time, one on one.  Even if they can not express themselves because they think they need to be brave little soldiers, give them the opportunity to talk about their fears, worries, “it’s not fair”ness.  They don’t understand, just like I didn’t.  We need to put up brave little fronts and all the while we don’t understand.

I totally understand Mom and Dad Love are tired and all their attention MUST go to Emily but all of the extended family members’ attention can go to the siblings.  Take them on “dates”, make them feel not forgotten in the midst of chaos.  Validate them as an important family member.

I didn’t have extended family members to give me what my little girl heart needed, I was all alone.  I was a good daughter, I learned to play by myself and “go with the flow” of emergency trips to the doctor’s office as my brother could hardly breathe or receiving the news as a “matter of fact” that my brother was spending another birthday in the hospital.  (I just can’t imagine how my parents dealt with this . . .)

So love up those siblings!!  They are treasured and valued and important!!

Please know, my prayers are with all of you.  I think one of the most frustrating aspects of cancer is those who haven’t had it or had to deal with cancer  in their family does not even know what you are going through; I feel the only time they will understand the gravity and “aloneness” of cancer is if they should have to personally experience it.  That seems so crass to say, but I am finding that true.  If I could, I would have every one of my readers take up the cause and fight for Emily – some how, some way.  But if they can’t empathize, their compassion and understanding just isn’t there.  Many shy away from cancer, they don’t want to get too close and they hope it never, ever happens to them.  I know, because that was me before cancer.  I would say, “Isn’t that too bad, I feel so sorry for them.”  But now I know and I am 100% behind the Love family and little Emily.

This topic needs to written about, if I can help just one family . . . My mom reads my blog and I know this will hurt her as I share my story and she’ll think she is to blame but she is not, nor my dad.  My parents were young and they did the best they could with what they had and what they knew.  We were not a young Christian family so the purpose and peace was lost, but maybe now it is found in that I can write about it bringing enlightenment to family members who are traveling on this “twisted and bumpy” road and hope to siblings who follow along because that is all they can do.”

So, to anyone who reads this and is in a similar situation, ask the adults who support and surround your family to help you.  In a sense, ask your children’s aunts and uncles, grandmas and grandpas or very dear friends to “adopt” your children.  You haven’t failed!!  You are exhausted, worried and never know from one day to the next what will happen; nothing is secure or dependable, the calendar is thrown away, you have no control and control is equated with confusion and perhaps chaos.

You haven’t failed!!  You are doing your best with what you know and with what you have!!

“None of us can understand why Emily has Leukemia. Why a child with so much life and spirit is struggling and suffering. But it is clear that God continues to watch over Emily and her family. He has surrounded them with family, friends, and strangers who provide meals and childcare; donate blood and platelets; offer financial support or the gift of a weekend away or a night out; who constantly are praying and lifting the family up to God; who give hugs just when they are needed most.”

little emilyannelove

And for those who care and wish they could do more, reread the last paragraph.  Even though you can’t quite empathize or completely understand the pain and struggle your family member or friends are experiencing, you can help!  Surround them, surround them with your love!  And relieve them by investing your time and self in the siblings that are trying to find their place and role in such uncertainty.

God bless the Love family and may Jesus continue to hold little emilyannelove in His everlasting and eternal arms.  And my love to her brothers and sister, you are good and brave little soldiers!

1964 – when both my brothers were sick. One was “wheezy” and the other had a “hole in his heart.”
More recent and very happy times!
I love my brothers very much . . .

1966, eight years old.
My horse, Lady.

two men, one woman, one young mom and the importance of support

Since my stem cell transplant I no longer produce an important antibody, the one that fights off viruses.  So every 6 to 8 weeks I go into my oncologist for a “boost”.  The Wikipedia says, “IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities.”

Today has proven to be a very social day here.  Our infusion room is rather small, seven reclining  chairs.  As I was prepared for my infusion, I overheard two men talking about Salt Lake City.  (Living in Kalispell, Montana, when I hear patients or survivors talk about Salt Lake City I tune in.)  When there was a pause in their conversation, I asked them if they were treated at Huntsman Cancer Hosiptal.  They both were in 2009 for multiple myeloma.  One gentleman was in remission and the other has relasped.

We shared our stories and exchanged our experiences at Huntsman.  Our clinics were right next door to each other and the Bone Marrow Unit was actually a part of the multiple myeloma clinic.  I heard doctor names that I was familiar with as well as places and wings in the hospital.

M, who relapsed, said he is a custom log home builder, owning his own company.  He is also an avid outdoorsman.

During one of his stays in the hospital in Salt Lake City, he said he was rather down and negative about his diagnose with cancer.  One day when he stood in the walkway bridge between the cancer hospital and the university hospital he admired the beautiful Wasatch Mountain range east of Salt Lake City.  As M stared at their grandeur, he made the decision he was going to beat this beast and promised himself when he was well he would go hiking and recreate in the mountains again.

Huntsman Cancer Hospital, Salt Lake City, UT, the Wasatch Mountains in the background

I shared with M that those mountains also inspired me. I told him about my experience of feeling blue and wondering if God really did care about me. (You can click here to read, “Does God really care about me?”)  I told him after looking out at those mountains, I, too, was filled with a sense of how big God is and if He could create those mountains, He certainly could take care of me.

What inspires you as a patient, survivor or caregiver?  When it seems that the rope is getting awful thin and perhaps even unraveling, what or who do you turn to for strength and support?

A base of support is a tremendous source of strength and encouragement.  If you have some sort of foundational support it is surprising how fast the base broadens, it reaches out to places and persons you have lost touch with or don’t even know.  People from all over rally around you, I was blessed beyond words and I will never be able to explain to them how their care and concern inspired me to hang in there.  But even greater, my support base had people who believed in prayer and the power of prayer and I can testify that when I called on them to pray for me, the calm and peace and strength to endure returned.

If you are a reader and not a patient or survivor, you do not realize how important you are in the life of a cancer patient!  M and I agreed that people are important.  If you think your note or email or text might be received at the wrong time or circumstance, it will probably be received at just the right moment!  I had many of those moments and I can’t tell you what they did for me!

After M left, a woman walked in for a blood draw.  My back is to the area where the nurses take blood.  The nurse was telling the patient her port was plugged and she couldn’t draw blood, she recommended this woman, J, to go to the infusion room where the pic nurses are adept at correcting kinks and plugs in the line.  When I heard the name “J”, I turned around to see if this was the J I talked to about stem cell transplants three months ago and she was.  I was so happy to see her, I was wondering if she ever did get her transplant.

J is presently in chemotherapy prepping for the autologous stem cell transplant.  Next Tuesday she is to be admitted for her transplant in another city far from here.  I was glad to see her but our conversation was cut short because the infusion room was waiting for her.

I wonder if J has the support she needs so far away from home, I hope she won’t feel alone as she goes through her transplant process.  This winter I mentored another transplant patient who was  alone.  I can’t image going through chemotherapy let alone a transplant with no one there to listen to you, talk to you, cry with you, encourage you.

If you are the friend or follower of someone with cancer, write, write, write!!  You will bless beyond your knowing!  Don’t be afraid, you are not a nuisance or an annoyance – you are a blesser and support!

I encourage the patient and caregiver to let everyone know when you need prayer!  I kept a CaringBridge journal all through my treatment and transplant and beyond.  The journal was my source of receiving encouraging words and notes as well as letting me alert my followers I needed prayer.  It was an amazing way to communicate!

If you are a patient, caregiver, friend or reader and know of someone who has cancer and very little if any support foundation, adopt them.  Ask if you may occasionally call or if they have an email address could you write them.  Cancer is a very lonely disease.  That is crazy to say because all of you can probably name ten people either first hand, second hand or third hand who has cancer.  Even if the patient seems to have a sufficient base, still there are moments of loneliness, and one email may be what the patient needs; cards are welcomed, too.

This could be an individual ministry or perfect for a  small group outreach.  It is pretty simple too, the written word, a spoken word, a listening ear and a shoulder to cry on, a visit to the infusion room or the hospital room.  And best of all, we can pray for them.  You’ll find when people are in crisis they gladly accept prayer.

As I was packing up my computer this early evening, there was one patient left receiving her last bag of chemotherapy.  She was a young woman and her mom and dad were there as her support.  I overheard that she had little children and I think one is still in diapers.  I thought she had breast cancer because both she and her mom were wearing pink shirts, sweatshirts and socks so I wrote on back of one of my flyers the name of a breast cancer blog about a young mom with young children, Praise You In This Storm.  I told her I assumed she had breast cancer and she said no, she had colon cancer.  Pink sure has us indoctrinated!!

I left for a moment and came back to tell her there are two other blogs written by young moms with cancer on my blog’s side bar.  She told me her husband works for the railroad and is often away days at a time.  Can you imagine?  First, so young and has colon cancer and two, her husband is away.  And then her mom said that her daughter is well supported by their church.  We agreed that the church plays an important role for anyone going through a traumatic event.  I invited them to our cancer support group and then I left for home.

What a day!