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. 

Trust and Peace in the midst of uncertainty ~ is it okay to cry?

As a Christian it is okay to have feelings!  It is okay to feel!  You don’t have to appear strong when you feel that the floor is falling out from under you.  You can cry, you can be afraid.  You can slam your fist on the desk, you can scream.  After all, didn’t Jesus have feelings?

We were driving north on S 300 W or was it S West Temple in downtown Salt Lake City?  I think it was in September because I just went through all my testing prior to my stem cell transplant.  We were hoping that my test results would be the approval to move forward into the most anxious phase of my treatment.

My cell phone rang.  Dr. Greg Pollack was calling to report the findings to one of the tests.  The PET/CT scan showed I had possible “residual” cancer in my psoas lymph nodes.  There was some doubt as to whether or not it was residual cancer as the scan detected dimly “lit up” lymph nodes.  But all the same, Dr. Greg said he and the team agreed that further treatment was necessary before I went for my autologous stem cell transplant.

I felt this sinking feeling and was devastated as Dr. Greg went on explaining the options that the team discussed and were available to me.  It was all confusing information.  But I took the news; I held on to it, I sifted through it and went on with treatment.  What else could I do?

Three years, nine months later, the floor fell through.  I finally allowed myself to feel the fear I felt that day when I was told, “Unfortunately, you are not 100% responsive to chemotherapy and the scan shows residual cancer.”  Three years, nine months later I remember feeling as if I was backed into a corner by a monster that wanted to kill me.  I felt defeated.  I was afraid but I buried my emotions, namely fear.

As Christians, when we are faced with a crisis how should we respond?  Is there a correct way?  Am I to respond in the “strength of the Lord” and stoically move on?  It sure helps all those around me. If I don’t show my fear then they won’t be fearful, they are comforted by my strength.

God was good in helping me be strong.  I trusted in Him and in that, I trusted my medical team’s decisions in proceeding with further treatment.  I did not let fear dominate, I did not panic and moved forward.  This was a set back, there was nothing I could do but follow directions.

But I wonder if I allowed myself to feel emotions all through my cancer, would my psychological recovery have been easier?  Different?  Faster?  I did trust God and God did grant me that “peace that surpasses our understanding” all through my illness.  In being blessed with those gifts I was able to cope in the time of crisis.  But now I do believe that we can have trust and peace and the freedom to express our emotions as emotions do cleanse our soul and maybe I would have been healthier by that continual washing.

Trust and Peace

“Do not let your hearts be troubled.  Trust in God; trust also in me.”  (Jn. 14:1)

Jesus was telling his disciples He was going away.  The disciples loved Him and this news was confusing and maybe for some distressing.  Jesus wanted to assure them that it is better that He goes away so that they can do even greater things than He did while He was on earth, “And I will do whatever you ask in my name, so that the Son may bring glory to the Father.” (v. 13)  Glory to the Father.

“But the Comforter, the Holy Spirit, whom the Father will send  in my name, will teach you all things and will remind you of everything I have said to you.”  Glory to the Father . . . the Comforter will remind me just as He did with the disciples to trust in Him who went away.

“Peace I leave with you; my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid.”  (v. 27)  Glory to the Father . . . the Comforter will remind me  . . . trust and peace.

This peace is other worldly.  John Piper refers to this peace as “the new world order.”  Is this the peace of the new heaven and the new earth?  Piper says no, that is not what Jesus is focusing in on.  “‘Let not your heart be troubled.  Neither let it be afraid.’  He has in view your heart, and the peace of your heart, and the fearlessness of your heart, and the untroubled waters of your heart.  He wants his people now,  to be free from anxiety.”

Do not let your hearts be troubled . .  trust . . Glory to the Father . . the Comforter will remind me . . peace . . Do not let you hearts be troubled.

“And he knows that the only kind of heart-peace the world can give is peace of mind based on good circumstances.  If the world can take away our troubles – through health insurance, big savings accounts, the best oncologist in the nation,  top research hospital, drugs and aggressive treatment – then the world can give some peace of mind.’  (italicized are my words)

“But Jesus says, ‘Not as the world gives do I give to you.’  Which means that his peace is not based on good circumstances.  It is given, and it holds sway, in spite of bad circumstances.  Here is how Jesus says it in John 16:33, ‘I have said these things to you, that in me you may have peace.  In the world you will have tribulation.  But take heart in that tribulation; I have overcome  the world.'”

His peace, not ours, is foundationally sure, it is immovable and irrevocable.  It is there, it is true and it is everlasting.  And nothing – nobody – will be able to take it from you.  The waters of fear and anxiety may wash over you but the foundation of peace will not give way under your feet.

Emotions

As we trust we are assured of peace but this doesn’t mean we are emotionless in the midst of trials and testings.  Feeling emotion doesn’t mean we show any less glory to the Father nor does it mean that the Comforter hasn’t come to dwell in us, we are no less a Christian feeling and exposing our emotion.

Jesus had feelings and He wasn’t afraid to show them to his friends and those around him

• love – Mt 19:13-15, Jn 11:3, 36, 38
• wept – Jn 11:35, Lk 19:41
• anger – Mk 11:15
• sorrowful and troubled – Mt 26:38
• sense of abandonment – Mk 15:34

So it is okay to feel.  We should all feel and in our feeling and expressing that feeling the Father is all the more glorified because we are turning ourselves over to the Comforter and allowing Him to do the work He was sent here to do.  The Comforter brings to our soul the promised peace that does indeed transcend our human understanding and this, my friend, is to the glory of the Father!

If I lived in the days of Hitler, would I be non-viable and terminated?

On June 5th, our primary day in Montana, I volunteered seeking signatures for the “Personhood Amendment” petition. This amendment is basically from the “womb to the tomb” definition of the term Person.

“A CONSTITUTIONAL AMENDMENT . . . Montana Constitution to define “person” as used in that section to include every human being regardless of age, health, function, physical or mental dependency, or method of reproduction, from the beginning of the biological development of that human being.”

This proved to be very interesting. We had to represent the proposition correctly starting with the word “conception”. Once the voter heard that word, many right away said “no” without giving me the opportunity to complete the definition of Person. Many more women than men said “no”. (We women are very well indoctrinated on our “reproductive rights”.)

I wanted the opportunity to explain Person from the womb to the tomb. I actually wanted to emphasis the later phase of our lives, the elderly, especially the infirmed elderly, as many of the voters I talked with will shortly approach that age.

With our indoctrination of “when does life begin”, I believe our society is very gray on what life is and as we see in this video, indifferent and/or mimic what they have been taught or have heard via education and media.

A day is coming when the question will be when is the elderly no longer viable. I so wanted the voter to think about that end of the life spectrum. But not only the elderly, how about the chronically ill? Some one who has relapsed once, twice, three times with cancer? Multiple sclerosis? Lou Gehrig’s disease?  Diabetic?   and so on?

A sobering thought came to me as I sat on my hospital bed while receiving chemotherapy. If this chemo didn’t work and my cancer didn’t go into remission and I needed further treatment, if I lived in the days of Hitler would I be expendable? And, if our society moves in the direction of indifference to defining what connotes life at any age, if I relapse (and many cancer patients do relapse and receive chemo as a “maintenance” drug) will I be denied my drugs and exterminated because I can no longer live as a productive Person and I am a burden to my family’s finances or worse yet, the government dole?

Hmmm. . . .

Hitler consider the Jews, Russians, Christians, people of dark skin color, infirmed, disabled and/or handicapped expendable Persons.  He exterminated them regardless of age, health, function, physical or mental dependency.  (Ooops, the last sentence came right out of Montana’s proposition for the Personhood Amendment.)

Adolf Hitler’s reign begins in 1933.  Abortion rights established 1973.   Will the term “Person” be defined in 2013?  Or shortly thereafter?  I guess we’ll see . . .