Cancer & Kids - Information & Resources for Parents

Within a few months of our daughter's cancer diagnosis, she came across a poster for Make a Wish and asked if she might be allowed to make a wish. We said yes, and Make-a-Wish has been such a wonderful blessing in our lives.

Any child with a life threatening illness may qualify for the program. The child's condition need not be terminal. A child is encouraged to make 2 wishes (a back up wish, should the first not be available, and I think usually there are two volunteers assigned to a Make-a-Wish child and their family.

If you are on the fence, call the foundation and see what they do. They are a wonderful group of volunteers and they really do neat things for these kids. Karina was so happy to make a wish (and even think about making a wish) at that point, because there was an incredible drudgery of painful procedures, things she had to do, and bad news from doctors. Make-a-Wish allowed us to

Karina wished for a puppy (a Pomchi puppy, after much research...these dogs are also hypoallergenic), and it is amazing how much that little sweet dog has lifted our spirits. Of course, a child is allowed to make a wish for anything (although they are warned some wishes may not be able to be granted, and one cannot wish for more wishes). Apparently 75% of kids wish to go to Disneyland or Disney World.

We were assigned 2 volunteers who met with us and also surprised us with little gifts and surprises throughout the "wish experience." Karina was able to have a puppy shopping spree at Petco and a puppy pizza party at her school.

Our puppy is always there to comfort her now and it has even been such a boost to everyone's spirits just to watch Teka's antics, walk the puppy and play with the puppy instead of just pouring over cancer reports or thinking about what the next tests will be. Karina has had difficult blood access and the pain from multiple pokes, IVs, etc. has been the hardest for her. It has been so wonderful being able to take Teka along with her (though usually waiting in the car...only on cool days). Teka really has been able to help her endure everything with greater ease.

But we also wanted to post on this because we found out additional information and links that some of you may find helpful. Because of updates in federal guidelines regarding the definition of service dogs, cancer families benefit:

From the Federal Register On Service Dogs:

"The 1996 DOT guidance document defines a service animal as ‘‘any guide dog, signal dog, or other animal individually trained to provide assistance to an individual with a disability. If the animal meets this definition, it is considered a service animal regardless of whether it has been licensed or certified by a state or local government.’’ This document refines DOT’s previous definition of service animal 2 by making it clear that animals that assist persons with disabilities by providing emotional support qualify as service animals and ensuring that, in situations concerning emotional support animals, the authority of airline personnel to require documentation of the individual’s disability and the medical necessity of the passenger traveling with the animal is understood."

The difference this makes is that a service dog can accompany a child into the hospital, on planes (without a pet fee because service animals are not considered pets), and in hotels or other settings that have a "no pets allowed" policy.

Not surprisingly, if parents bring a service animal with a "no pets" policy, they should be prepared to have documentation. We print a copy of the Federal Register document (with the relevant definition of service dogs highlighted), and have a copy of a document registering Teka as a service / emotional support dog from her veterinarian, as well as a prescription from one of her doctors that essentially says: "** suffers from a serious medical disorder that affects her quality of life and emotional health. I have prescribed a service dog to assist her." We also obtained appropriate patches from SitStay.com that identify her as a service dog and therapy dog. She already has a harness.

For other reading:

Assertive Cancer Patient Blog: The Cancer Dog
Right to Emotional Support Animals in "No Pet" Housing

I've been reading C.S. Lewis' letters and came across this letter to a friend:

"...I know all the different ways in which it gets one: wild hopes, bitter nostalgia for lost happiness, mere physical terror turning one sick, agonised pity and self-pity. In fact, Gethsemane...what helped Joy and me through it was 1. That she was always told the whole truth about her own state. There was no miserable pretence. That means that both can face it side-by-side, instead of becoming something like adversaries in a battle-of-wits. 2. Take it day by day and hour by hour (as we took the front line). It is quite astonishing how many happy- even gay - moments we had together when there was no hope. 3. Don't think of it as something sent by God. Death and disease are the work of the Devil. It is permitted by God: i.e. our General has put you in a fort exposed to enemy fire. 4. Remember other sufferers. It's fatal to start thinking 'Why should this happen to us when everyone else is so happy.' You are (I was and may be again) one of a huge company. Of course we shall pray for you all we know how. God bless you both,

Yours, C.S. Lewis"

I also helpful to read C.S. Lewis' comments about the differences between the acts of God and acts of Satan. He noted that all acts of creation and creativity are ultimately from God. When Satan acts, he can only corrupt or destroy.

I've been reading my way through C.S. Lewis' collected letters, and I enjoyed reading this letter of consolation and encouragement to a friend:

"I am sorry to hear that your (temporal) news is so grim. Your spiritual news is perhaps better than you think. You seem to have been dealing with the dryness (or 'the wall' as you well name it) in the right way. Everone has experienced it or will...It is v. important to remember that Our Lord experienced it to the full, twice-- in Gethsemane when He sweated blood, and the next day when he said 'Why hast thou forsaken me? We are not asked to go anywhere where he has not gone before us. The shining quality may come back when we least expect it, and in circumstances which wd. seem to an outside observer (or to ourselves) to make it most impossible..."

"What is most re-assuring to me, and most moving, is your sane and charitable recognition that others have as great, or worse, trials: one of those things wh. no one else can decently say to the sufferer but wh. are invaluable when he says them to himself...You are quite right when you say I needn't 'work up' sympathy with you! No, I needn't. I have had enough experiences of the crises of family life, the terrors, despondencies, hopes deferred, and weariness. The trouble is that things go on so long, isn't it and one gets so tired of trying! No doubt it will all seem short when looked at from eternity...Keep on. Take it hour by hour, don't add the past & the future to the present load more than you can help. God bless you all."

Our daughter was baptized when she was eight years old and she chose her Scripture passage: "Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." - (Joshua 1: 9)

How often we have thought of this passage since her diagnosis and as we have started her medical journey. May the Peace of the Lord be with you and your child wherever you go.

Joshua 1

There are many ways you can support your child in the clinic and the hospital because blood tests and intravenous medications are a part of cancer treatment life.

1. Stay calm yourself.
2. If your child is a "difficult poke", make sure they have drunk plenty of fluids beforehand, and that they are warm (veins are more difficult to find with dehydration or when the weather is cold).
3. Consider a comfort stuffed animal or doll.
4. Think about asking your child to look away when the blood is being drawn or the IV placed.
5. For young children, allow them to sit in your lap. For older children, hold their other hand. For preteens and teens, ask them if they'd prefer you waited outside.
6. Speak soothing words. Our daughter's first IVs were fairly traumatic and at the first hospital we went to, they didn't allow us to be present (not a Children's Hospital) and she required multiple pokes. Afterwards, we politely insisted, and we calmed her with words like, "You can do this." "You're doing great," and "God's with you."
7. Be friendly with the technicians, but if they are clearly struggling, ask for another nurse or phlebotomist. Sometimes they will send for the most expert pediatric nurse available.
8. If your child is a "difficult poke", get to know reliable veins that can help the technician or nurse draw the blood they need. Some veins fibrose after having pokes or IV's and these can be misleading and cause unnecessary sticks for regular blood draws. Most blood drawers appreciate it if a parent can direct them to a "good vein."
9. There are more anesthetic options available than ever before, but be aware that some of the anesthetics (like lidocaine, EMLA, Jtips) narrow blood vessels making it more difficult to draw blood or place IV's.
10. When undergoing a procedure, see whether an IV can be placed as your child is being induced with laughing gas. This not only eases a child's anxiety, but also reduces the pain of the IV placement.
11. For older children (often tweens and teens), a strong vagal response may mean that they become pale, clammy, and light-headed with pain. If a nurse is having trouble placing an IV or drawing blood, and your child looks pale and the veins look like they've disappeared, see if they can lie down on a table or gurney, and take a break before trying again. During this break, pray with your child, ask for a warming blanket, and raise their legs up (higher than their heart, if possible). These simple steps can work wonders.

There are many other helpful tidbits to learn about IV's, their need to be changed, and the special care of central lines. Some additional resources are listed below.

Needles, bloodraws, and children
Teens living with cancer: central lines
Teens Living with Cancer: IV's

The financial aspects of a serious illness like cancer may be overwhelming. Some tips we've learned so far:

1. Don't pay until you get the EOB (This is like don't fire until you see the whites of their eyes): The EOB is the Explanation of Benefits. Some hospitals and doctors will bill immediately before medical insurance has determined their part.
2. Organize your medical records. Keeping Financial Records and Childhood Cancer.
3. Get to know your insurance plan. Was something denied? Was that a mistake? Insurance Plans at the American Cancer Society site, Seeking Financial Help
4. Know your eligible tax deductions. Download and read Federal Publication 502. You can deduct your copays, money spent for medications, 18 cents per mile for travel to the hospital, clinic, etc., parking at the hospital or clinics, up to $100 per night for lodging when parents are traveling with a sick child, as well as a myriad of other expenses.
5. Participation in a Drug Study? Some patients have had major financial burdens lifted when they were able to enroll in a drug study with a promising medication. They may be able to obtain the medication completely free. The main downsides to this may be that the study may require specific limitations in administration or dosing (depending on the study), and your child might have to have more studies checked because of the needs of the research.
6. Appeal an insurance decision? Don't be surprised if your insurance decides to decline some of your doctors treatment recommendations. You may need to appeal this with doctors notes, a phone call from the doctor, and more documentation. This is often worth the trouble. We successfully appealed our initial decline of an expensive cancer chemo drug (Sutent - price $5800 per month!).

One of the first decisions parents need to consider is where to go for their child's primary management, and whether to obtain second or even third opinions.

Childhood cancer is a relatively rare condition, so generally an involvement of a University-based hospital or Children's Hospital will provide you the greatest experience and access to the latest research and investigational drugs for cancer. Depending on how far you live from such a hospital, it might still be worthwhile to have a close relationship with your family doctor or pediatrician. It is often convenient to be able to check routine lab studies locally, or to even run questions by your regular doctor.

In general, Childrens Hospitals will be much more "kid-friendly". Parents are routinely allowed in with their children for before and after many procedures and during many tests (not so at local hospitals, even well-meaning ones), and this can mean a lot to reduce your child's fears. At Seattle Childrens, we were allowed in for all IV placements and blood draws, and her MRIs and CT scans. In addition, most procedures (even more unusual ones like heart ECHOs) had an option to watch a video or movie during them, and it is amazing how much this made the process much more bearable. Our daughter was able to watch half a Pokemon movie during her PET scan, and The Incredibles during her ECHO. Too bad they don't allow this for more adult procedures! Also, having been on the other side of the table, we know that blood drawers and IV line placers are more relaxed if they deal with children all the time, than if they mostly deal with adults, and only deal with children occasionally. When we were seen initially in a local hospital, we could sense the mild nervousness of the nurses with our 10 year old for IV placement (she had to have many more pokes, too), whereas at Seattle Childrens, one look at her made them relax because she was so "old".

We also researched our daughter's cancer, hospitals, and physicians before deciding on a second opinion. Whether a second opinion is needed might depend on the rarity of the cancer. Because our daughter's cancer is extremely rare (less than 100 per year, even fewer below the age of 12), we made the decision to seek a second opinion in Boston at Dana Farber / Boston Childrens Hospital, although she is currently having most of her studies done at Seattle Childrens Hospital, so she can be at home and attend her regular school.

Many parents are worried about leaving their local supports in traveling possibly across country. It's helpful to know there are many resources available - including discount hotel / housing, and even free flights (see below) for at least two parents accompanying a child with cancer or other serious illness.

Additional deciding factors might include opportunities for novel treatments (for instance, to our knowledge, Dana Farber is the only center providing an immune vaccine option from surgically removed cancer tissue), that often can be found searching the the Oncology department's website under Clinical Trials or Research.

Even so, there are many variable that may come into play with choosing a hospital or site for a second or third opinion. Some families are surprised they may see a resident or fellow when they travel cross country for another opinion, and if appointments are made without specifying a particular attending, it is possible you may see a doctor with little specific experience in you child's cancer.

Some academic or tech-saavy parents may comb research papers to identify specialists in the field of their child's cancer, but even recently-published papers may be from different specialists involved in cancer treatment (for instance radiologists, oncologists, surgeons) and if the paper involves a multi-year review of a cancer type, the information was gleaned over the course of years where treatments and assessments available may have changed considerably.

Regarding out-of-state surgery, this is often a difficult choice because families confront not only the costs of being out-of-state and away from family and friends for the surgery, but also recovery and or rehabilitation time from the surgery. In our case, a second opinion chose us rather than us choosing a second opinion. Because gynecological tumors are rare in children, an adult gynecologist referred our daughter to a specialist in downtown Seattle, and then he told us after looking at her MRI scans, he wasn't comfortable doing the surgery, so we knew we needed to find someone else (we appreciated his honesty).

The choice of a surgeon is particularly important for cancer because he or she has to have experience with different cancers, knowing how much of a tumor margin to resect, what studies should be done beforehand, and how normal tissues could be spared. Usually this will mean a surgeon at a University-based Childrens Hospital, and sometimes more information about the doctors can be obtained by looking at their research interests and even patient forum boards. In general, if you opt for an out-of-state surgeon, we recommend also having an oncologist at the same institution. Ideally oncologist and oncology surgeon have complementary roles and work together. Oncologists may be better at explaining options; some surgeons are better "do-ers" than talkers.

Free Airline Flights for Families of Children with Cancer
Ronald McDonald House Charities