When The Battle Doesn’t End With Remission – An Unfortunate Childhood Cancer Reality

Each day in the United States, 43 children will be diagnosed with cancer.  Every.  Single Day.  Shocked parents will hear that THEIR CHILD HAS CANCER. Grandparents, siblings, aunts, uncles, friends, neighbors and communities join in the fear and sorrow.  The impact is far and wide.  One in five children will not survive.  Of those who do survive, the story sadly does not end with remission.


Advances in childhood cancer treatment and increased survival rates are cause for celebration.  Unfortunately, far too many children still lose their lives to cancer, the actual treatment is horrific, and those who do survive often face serious, lifelong and debilitating side effects.  In fact, as many as two-thirds or more of all childhood cancer survivors have medical (and emotional) problems as a result of their treatment.  Some statistics elevate the number of children with post-cancer medical issues to a staggering 90%.  Children face unimaginable pain and suffering simply to survive their diagnosis.  Remission is a blessing to be sure.  However, the frustrating and heartbreaking reality of post treatment medical issues is not well known or discussed.

Fighting cancer at any age is hard.  Pain, fear and enormous difficulties become center stage. People tend to find strength in the hope for survival. When a patient does achieve remission, many believe this is the happy ending.  For so many, though, the battle has simply changed.  Children are especially affected by this unfortunate reality.

Some of the common after effects of childhood cancer treatment include:

  • Second cancers
  • Heart problems
  • Reproductive problems
  • Growth, development and hormone problems
  • Severe chronic pain
  • Lung and breathing problems
  • Learning and memory problems
  • Emotional problems
  • Digestive issues
  • Mobility challenges
  • and much more

Several factors contribute to cancer care difficulties unique to children.  First, dangerous and toxic treatments are given to growing, developing bodies. Brains, organs, bones and soft tissue are not yet fully developed.  Chemotherapy, radiation and surgery can interrupt and damage appropriate and necessary growth.  It’s easy to imagine the adverse long-term consequences for interruptions in brain development, bone and tissue growth, organ maturation, and even emotional security.  Second, there are very few available treatments designed specifically for children. Children’s bodies are not suited for adult treatments, but that is usually the only option. Shockingly, children are still receiving treatments developed during World War II.  In two decades, only four new drugs have been approved by the FDA specifically for children. There are simply not a lot of protocols designed for children and havoc results within their bodies.  Third, most children are diagnosed into the late stages of their disease.  Unlike adults, there are no screenings for the various potential cancers in children.  They are also unable to articulate symptoms well, nor advocate or even understand the need for additional medical inquiries when appropriate. Diagnosis during the late stage of cancer makes it much harder to cure and requires longer and stronger treatment. These factors all combine to cause potential medical complications for children after cancer care and remission.

My son is a childhood cancer survivor who falls into the category of those who suffer from treatment-related long term effects.  Jake was initially diagnosed at age 5, but has continued with ongoing medical care for more than 15 years now.  His post-cancer condition is worsening and no improvement is in sight.  When Jake was 5, a partial foot amputation was required to excise an expansive malignant tumor. Doctors had to cut through large amounts of bone, tissue and nerves.  As he grew, the amputated area presented problem after problem. Additional masses appeared, scar tissue impeded movement, arthritis developed, stress fractures occurred, nerve damage resulted, phantom limb pain wreaked havoc, mobility issues arose, and more.  One necessary surgery after another (20 in all) both helped and hurt him.  Unfortunately, the last surgery failed to help and also created new issues.  Jake developed four inoperable neuromas in his leg and foot. These are benign nerve tumors that cause significant burning pain. He also developed Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) which is a chronic pain condition involving a malfunction of the nervous system with resulting severe, ongoing pain. My son’s cancer is in remission and we are incredibly grateful, but his life has been heart-breakingly altered from the battle. He will face significant medical issues for the rest of his life due to a cancer diagnosis at age 5.

Jake’s story is unique in details, but fairly common in that the majority of children are permanently and adversely affected by cancer care. Hopefully the more people learn about the ongoing struggles and inappropriate treatment options for children with cancer, a stronger push for research funding and overall support will result.  Currently only 4% of federal funding is allocated for children’s cancer (pending legislation will slightly improve this figure, but not by much).  Many states provide NO funding at all for childhood cancer within their state cancer plans.  Pharmaceutical companies do not provide much funding for childhood cancer research and the private sector is unable to gather the necessary funding and support despite widespread efforts to do so.  Children are precious. Children deserve a chance to grow up, thrive, find happiness, contribute to society and live full lives.  We must find a way to give them this chance. We must find better ways to treat children with cancer.  Children deserve to not only survive, but to thrive.

How Teachers Can Help (Or Harm) Students With Cancer

As school kicks off across the country, I write to teachers and administrators about students with cancer – or any serious medical diagnosis. Those who chose an education path are naturally caring by virtue of their selected occupation.  They undoubtedly juggle a great deal and come across unique student situations frequently.  This information is simply provided as an additional resource with helpful suggestions all in one place.  Probably the most important thing I want to impart is that these children desperately need you!

My son was diagnosed with cancer at age 5.  From preschool to 12th grade, he underwent hundreds of procedures, was frequently hospitalized, endured over 18 surgeries, and had continual testing. Through the years, he had some truly remarkable teachers who had a lasting positive influence on him. They were absolute gifts to him and our entire family.  Unfortunately, he had a few teachers who actually hurt him deeply.  Please remember that you are in a unique position to have a lasting impact on these sweet children who are facing the fight of their lives.

Here are some important reminders for teachers and administrators:

    1.  Know that both the cancer patient and parents are entirely overwhelmed.  They are scared, exhausted, and traumatized.  Going to school can provide a nice refuge and distraction for the child.  It can also present a lot of anxiety and fear.  The children are different.  They feel different.  They have had disrupted sleep and pain.  And that may be ongoing.  They sometimes look different, having outward signs of treatment or surgeries. They are coming to school feeling vulnerable and not quite themselves.  Even if they put on a brave face, it’s so important to keep in mind that their lives have been challenged in ways that you can’t possibly imagine.  In addition to the intense trauma of medical care, they have felt the stress of their diagnosis on the entire family … they have likely witnessed horrors in the hospital … they are often unclear or confused about their medical status … they are scared about overheard cancer stories … they have endured unbearable pain … they are unsure if they will survive … people are treating them differently … they have medication issues… and they have fears about future medical needs.  The list could go on and on.  In short, no matter how well adjusted a child may appear, please keep in mind that most still need some special attention. At a minimum, just keep an extra lookout to see if your intervention or support could be helpful.  You could be their lifeline.  You probably are their lifeline even if they don’t show it.
    2. This is somewhat obvious, but children with cancer are often physically and mentally drained. Please don’t underestimate this.  Their stamina is depleted as they have used so much fighting their disease.  They have been under attack in ways no child should be.  It can be hard for them to focus.  Participation can be difficult.  This can be exacerbated by the ongoing use of medication.  We all know that these drugs, although necessary, can wreak havoc on bodies in a multitude of ways.  The child may not have the awareness or confidence to relay these issues to you.  Please be mindful of the child’s limited endurance and abilities.
    3. Parents are often afraid to ask much of you as the teacher or administration.  They know that their child is presenting a unique set of circumstances and they don’t want to be a burden.  They desperately hope for a good school experience, but often don’t want to express too many concerns or outright ask for help.  They also have faced horror that most cannot imagine.  Fearing for your child’s life and watching their sweet little bodies endure brutal medical care is truly hell.  Parents may not have their wits about them either.  Of course, some parents may be full of requests or demands.  We all react differently.  Either way, please keep in mind that the parents are often as traumatized as their child.  Be patient with them.  And as an added act of kindness, you could even offer your help and empathy.  Taking that first step would be an incredible relief to any parent enduring their child’s difficult medical journey.
    4. Peer relationships are very, very complicated.  Children just want to fit in.  They want to have friends and participate in normal activities.  Cancer or any serious medical care can severely alter all of these things.  Just as adults don’t often know what to say or do around those who face intense medical care, children can be unsure also. Most children will be nice and supportive, but this often doesn’t last.  Some children ignore the sick child.  Some children are actually mean.  Mean behavior occurred in our situation and completely broke my heart.  My son was bullied on several occasions.  He was called a freak, told he should have just died, and more. Children with medical issues can be targets and unfortunately they are already quite vulnerable.  Exclusion and ignoring can be devastating to the child also.  They have already missed so much. They often don’t have the energy or confidence to push their way into the mix and could really use your help.  Please try to encourage kindness and inclusion.  Please keep an extra eye out for any mean behavior.  And please continue to do so throughout the year.  All of these issues can remain long after the medical care subsides.
    5. Remember that siblings are facing challenges as well.  Their household has been turned upside down.  They see their sibling in pain.  Their parents are frequently absent or distracted.  So much is running through their minds and they often don’t know how to handle or articulate it.  A little extra love to siblings of cancer patients can go a very long way.  Please also be sure to let parents know if you see any behavior they should know about.  Parents are out of their minds with worry about their sick child, but they worry about their other children as well.
    6. Be aware that even after medical care has seemingly ended, pediatric cancer patients still face challenges.  Over 90% of childhood cancer survivors have lifelong and debilitating side effects.  Some are mental and some are physical and most are very daunting.  Children often take medications for the rest of their lives that can cause ongoing problems.  Sleep, alertness, learning issues, and overall well-being can be impacted.  Most children also undergo constant scans to check that their cancer has not returned.  The fear and worry attached to a possible recurrence can take a huge emotional toll. Children often face depression, sadness or forms of actual PTSD after treatment.  This can creep into all areas of life and can last a very long time.  Please remember that childhood cancer survivors likely have some ongoing medical and emotional issues that can impact their daily lives.  Just because they seem to be in remission and cured, there are likely underlying issues related to their past medical care that aren’t readily visible.
    7. Know that parents appreciate your help so much!  The appreciation really cannot be over emphasized.  They may not show it, but they definitely feel it.  In the midst of a child’s cancer care, parents are often lost in a fog.  I am sure most express thanks, but the depths of that thanks go deeper than you can imagine.  I look back even years and years later and wish I had thanked, hugged, and hugged again certain teachers over and over.  Their acts of kindness and support meant the world to me.  There is no more helpless feeling than watching your child fight for their life and health.  It’s hard enough to watch your child struggle through the normal trials of life.  A cancer battle is excruciating to witness.  Those teachers who go above and beyond to help these precious children are angels and we parents hold them deep within our hearts forever.

Thank you for reading and considering these suggestions.  I hope you understand what a unique position you are in to truly impact the life of a child facing cancer or any intense medical care.  I realize that most teachers are intuitively aware of these things, but gentle reminders can never hurt.  Thank you for caring for our children.

The Sibling Struggle: When A Brother Or Sister Has Cancer

Try to have fun with the siblings even while medical issues are present. Always make the best of it and take advantage of the better days.  They are a gift.  (Pictured: Jake, Avery and Pierce with their mom, the author of this article)

A cancer diagnosis in a child is completely devastating.  It changes everything in a family.  Emotions, routines, finances and realities are fundamentally altered.  The young cancer patient and parents are fully in the trenches fighting this horrible disease, but additional and often forgotten victims are the siblings.

Imagine this.  A young boy arrives at school.  He sees all the kids laughing and playing.  He observes a bit.  His friend finally walks over and says “hey, why are you standing here?”  He fakes a smile and says, “no reason, let’s go play,”  He wants to say that he feels terrible, but he keeps it inside.  His brother has cancer.  His parents are frequently gone.  The mood in the house is somber.  He’s worried his brother will die.  The medical machines and physical affects of treatment are scary.  He feels frustrated (even jealous) that his sick brother gets so much attention.  He feels guilty for feeling that way.  There are so many confusing and emotional struggles.  But he joins the other kids at school and pretends everything is fine.

How does an adult cope when a loved one is diagnosed with cancer?  Even as adults, it’s a huge blow.  Imagine being a child and hearing that news.  Life changes all around you, but you don’t fully understand it.  The medical terms, the partial explanations, the sadness of your adult circle, daily life is turned upside down, everyone is tired, your brother or sister looks and feels horrible.  You’ve heard stories of people with cancer dying.  You hear conversations that scare you, but you’re afraid to ask for details or explanations. And you have no idea how to process or cope with such tragedy at a young age.

Having a child with cancer is as bad as you might think, probably worse.  You never want your child to hurt or suffer.  Cancer takes hurt to a new level.  The ever-present and terrifying concern for survival looms daily as well.  Parents try desperately to care for their sick child while also maintaining responsibilities at home, work and to other children, but it’s impossible to handle everything as you once did.  When my oldest son, Jake, was diagnosed with cancer, I was instantly concerned about his brother Avery too.  He was young and I knew he’d have to face a lot of challenges.  We tried to do everything we could to make it easier for him.  We made sure he stayed with loving family members, that he had good meals, that we kept in touch with him as much as possible, that we constantly told him how much we loved him.  When we were home with his recovering brother, we tried to take turns spending special time with him.  We tried to include him in games and limited activities with his brother.  It was not the same though.  His brother was fragile, hurting and scared.  He didn’t sleep well and took a lot of medicine that made him different.  We weren’t the same either, even though we tried to be as upbeat as possible with him.  Unfortunately, cancer took a long and arduous toll with medical procedures continuing for 15 years.  Another brother (Pierce) joined the family and both siblings essentially grew up watching Jake endure one thing after another.  There have been constant surgeries, hospital stays, procedures, worries, tests, mobility issues, horrible side effects, and emotional struggles.  That’s a lot for any child to take in, both for the patient and the siblings.

I’ve constantly worried about my children because of this harsh fate.  I’ve read books and articles about how to help them, prayed for them, talked to professionals, asked for help, tried to keep them occupied and entertained, and showered them with as much love as possible.  Of course, life will sometimes throw hard realities at us and our children.  We can’t always protect them or make things better.  That doesn’t mean we don’t try.  To this day, I wish I had known more and done better.

The sad reality is that my son’s cancer diagnosis not only caused tremendous struggle and hardship for him, it hurt his brothers as well.  They’ve had to contend with issues of jealousy and abandonment.  They’ve had to alter plans and daily routines constantly.  They’ve witnessed very scary and sad realities.  They’ve been worried when things are not going well.  All of this while just trying to grow up.

On the good side, they have learned more compassion for others.  They’ve gained a resilience in coping with struggles.  They’ve felt and understood the blessing of community and support.  They’ve joined us in charity/fundraising activities for childhood cancer. They’ve seen continual efforts at trying to remain hopeful and optimistic in hard times.  These are all positive things, but of course I wish that cancer had never affected our family.

When tragedy strikes, we all just do the best we can.  I firmly believe that information and reminders are very helpful though.  A conscious and mindful approach to handling the stress is important as well.  In that regard, below are some insights that I have learned first-hand and through years of researching ways to help siblings of a cancer patient.  Parents, grandparents, aunts, uncles, teachers, friends and neighbors can help siblings by keeping the following in mind:

  1.  Be aware and try to understand that siblings will have varied emotions.  They may face fear and anxiety, confusion, abandonment, jealousy, sadness and/or guilt.  They often won’t talk about these feelings, but be on the lookout and be available to talk with them or seek help as appropriate.
  2. Know that their behavior may change in many ways.  Siblings have experiences of sleep disruptions, bad dreams, moodiness, changes in appetite or regression.  If these behaviors develop, realize that it is likely connected to the tragedy facing the family.  Be patient and offer extra support.
  3. Most hospitals have child life specialists, social workers or counselors that can offer guidance.  Some even have programs specifically for siblings.  Ask for help in the form of meetings, literature, websites, activities or otherwise.
  4. It’s important to try to maintain a sense of normalcy.  It helps for siblings to stick as close to their previous schedule as possible.  School is important and socializing with friends can do wonders.  Let siblings know that it’s ok to laugh and have fun still.  Allow them to participate in planning their care and help make decisions about changes that must occur.
  5. Explain the cancer diagnosis in age-appropriate terms.  Let them know they are encouraged to ask questions and that their feelings are very important to you.  Assure them that you understand this situation impacts them too.  Constantly reassure your love for them.  Spend as much time with them as possible.  Call and FaceTime if you can’t be there regularly.  Try to remain positive so they will feel a sense of hope and calm.
  6. Contact the school and let the teachers and administrators know what’s going on. Ask them to keep an eye on the sibling and watch for changes in behavior.  Also ask for a little extra support as they navigate the difficult time.
  7. Make sure the sibling knows they didn’t do anything to cause the cancer and that it is not contagious.

Most importantly, just love the siblings and let them know you care about them too.  Trust your instincts and do the best you can.  This is an extraordinarily hard time.  You can’t be everywhere and everything to all family members, but if you lead with your heart you can’t go wrong.





The [Side] Nightmare of Medical Care: Insurance, Logistics & Stress, Oh My!


In our 15 year medical journey with childhood cancer and serious related care, there have been so many times I’ve wanted to just scream!  OK, maybe I have screamed a few times.  And now that I think about it, I probably should have screamed a lot more just to get it all out.  Of course, the actual medical concerns, treatment and care are awful.  You are worried sick about your child.  The logistics surrounding it all, however, are a frustrating (and huge) insult to injury.

Let’s see.  What can be complicated?  Finding doctors.  Finding doctors covered by insurance.  Finding good doctors you feel comfortable with.  Finding doctors familiar with the complex situation.  Actually getting appointments.  Obtaining all required medical records.  Figuring out payment issues.  Dealing with unusual medical situations that insurance decides to question.  Needing care with multiple doctors in multiple states.  Facing travel, lodging, and new surroundings.  Getting prescription refills.  Getting prescriptions authorized.  Many many many problems with prescriptions.  Getting call backs from office staff.  Figuring out second opinions. Understanding the complex medical jargon and serious consequences. Balancing different medical opinions.  WHAT IN THE WORLD??

This list could actually go on and on.  Not to complain too much, but side complications continue to pop up and it’s maddening.  I just want to focus on my son.  I want him well.  I want to help him more than anything in the world.  With serious medical care, that’s the primary focus and it’s the ultimate thing that matters.  Unfortunately, all of the complicating logistics become the unwanted requirements of reaching that goal.

I’ve been thinking a lot lately about these things.  This year, we’ve spent 7 months focusing fully on ways to help Jake manage severe pain and physical limitations. In addition to feeling terrible, his life has been on hold during the quest. We’ve seen doctor after doctor, three states, all with different suggestions, all with serious risks. Several surgeries have been recommended.  Each one is a new surgery, never before performed.  None are fully covered by health care insurance.  While we worry and fear the possibilities and right course of action, we have to maneuver complex payment issues, reviews, out of network situations and denials.  We have to seek subsequent diagnostic care and track down full medical records (harder than you’d think).  We have to balance competing surgical and non-surgical recommendations.  Meanwhile, multiple required medications create concerns.  There are difficult side effects, increasing tolerances, refills needed but not forthcoming, and the biggest slap in the face — a medicine that would definitely help one issue is directly linked to Jake’s cancer and must be avoided.  We are simultaneously trying non-surgical treatment options because those are the safest alternatives, especially in his current situation.  There are a lot of choices out there.  Unfortunately, most of them require weeks or months of effort before any positive result is achieved, if ever.  You keep trying it all, hoping something will work.  Meanwhile, the costs pile up and you don’t know if you’re actually getting anywhere.  So far there has been no miracle cure.  A few things have helped a little, but nothing has reached a level that can truly improve quality of life in terms of pain relief, better mobility, etc.  So now what??

We continue the fight.  We research and try new approaches.  We pray and attempt positive moods.  (I personally try not throw phones across the room when nothing seems to be going right. Thankfully I’ve held back so far!  I have a very calm demeanor so you know things are truly frustrating if I have reached this point.)  With all of this, is there anything helpful that we’ve discovered?   I’ve stumbled upon some practical things to keep in mind that have made things easier.  Hopefully they can help you too.

  1.  Support.  Talking with other people who live in this medical world is hugely helpful.  The feeling of not being alone absolutely provides strength.  I am forever grateful to a fellow cancer mom who invited me to a relaxing and fun dinner with other cancer moms.  Sharing stories and feeling that overwhelming support meant the world to me.  So many people face this difficult medical arena and it’s somehow comforting to realize that fact.  People conquer these complexities all the time.  That means you (we) can do it too.  It’s helpful to connect with people who truly relate to the situations that arise and often have insight that proves useful as well.
  2.  Medical Ally.  I recently discovered that having a medical ally can be helpful.  This can come in many forms, but we’ve signed on with a trusted physician who will help manage some of the arising issues as Jake’s “concierge-type” doctor.  It’s such a relief knowing we have someone to call when problems occur.  Additional costs are a huge concern with expense after expense piling up, but fortunately his rate is reasonable and the peace of mind is worth it’s weight in gold these days.
  3. Keep a list of medications on your phone (or somewhere handy).  You’d be surprised how often you’ll need to reference them – and with exact dosages.  I’ve started taking pictures of prescription bottles, kept in a phone folder for easy reference. Since it’s on my phone, it’s always readily available.
  4. Don’t resist calling doctor offices. It’s important to feel comfortable calling and re-calling when medical staff does not call back or follow up as promised.  My original approach was to be overly polite and patient, but I eventually realized this just prolongs things which hurts my son – and builds up frustration which is bad for everyone.  I still proceed politely with the staff, but I do continue to call until the problem is solved.  Sometimes that’s the only way to move things forward.  As a side, it can be helpful to take note of the staff members and nurse’s names that you may need to call upon.
  5. Ask for a handicap pass.  When your child is in pain and daily outings are difficult, it’s best to ease that burden in any way that you can.  Most doctors are happy to sign the paperwork for this.  I was so nervous to ask the first time, but it was no problem at all.  Just print the form off the DMV website and bring it to a treating doctor.  Return the completed form to the DMV and you’re all set.
  6. Make the most of appointments. At the doctor visits, take notes, ask for spellings of words or further explanations if needed.  Doctors will often try to rush you; don’t let them if you need more time. I do try to be understanding.  I know they are busy and deal with serious situations.  But it doesn’t help anyone if you leave feeling uninformed or unprepared to proceed.
  7. Don’t be afraid to talk about the medical situation in general.  I’ve learned many things from strangers, acquaintances and friends alike.  You can get a lot of ideas, options to try, things to avoid, or just general information to weigh with what you already know.  It’s been incredibly useful talking with other patients and caregivers, not to mention the sense of camaraderie through tough times.  Of course, there are times that you’ll feel completely overwhelmed and it’s perfectly fine and understandable to shy away from seeking more information.  There is a time and place for this and you’ll know when it feels right.
  8. Know that prescription costs can vary.  Oftentimes, a certain prescription is denied by insurance and the price quoted is completely outrageous.  If you do some research, you can often find cheaper prices or discounts.  One of the best sources is GoodRx.com. Be aware also that prices can differ by state.  A compound prescription cream was quoted at over $2,000.00 (for a monthly supply) in the state of Virginia and insurance refused to cover it.  After months of searching, we found a supplier in a different state who only charged $81.00.  Now my son is finally able to try a simple, non-invasive pain relief option that seemed unattainable for a long time.
  9. Appeal insurance denials.  Oftentimes insurance companies will deny certain treatment options and you feel out of luck.  Know that this isn’t always the end of the story.  You can and should have the physician file an appeal explaining the medical necessity of the care.  It can take more than one appeal, but ultimately approvals can result.  Doctor offices are familiar with this so don’t be afraid to ask.  (Although you may have to call and call again as mentioned above).
  10. Stay at hospital hospitality houses or the Ronald McDonald House. We didn’t stay at Ronald McDonald for several years even though most treatment took place in New York and we lived in Virginia.  As time went on though we finally booked with Ronald McDonald and I wish we had from the beginning.  I learned that they are rarely full when you schedule in advance (arranged through the hospital) and if they are full, there are agreements with local hotels for very discounted rates.  Not only is this extremely helpful when juggling a lot of additional medical expenses, but the love and support at Ronald McDonald cannot be overstated.  Everyone is there because a child is facing serious medical care.  Everyone is kind – from the staff to visitors to patients and families.  There are therapy dogs, free community meals, 24/7 free ice cream (my son loved this), activities and more.  It’s a special place and I highly recommend looking into it.
  11. Check with employers about insurance liasons.  Not all companies have this, but often places of employment have benefits personnel that can help when insurance issues arise. This is especially true with larger organizations.
  12. Read coping books.  I’ve said this in past blog posts, but there are a lot of books and articles out there that provide practical advice and support.  I found that the best book for our personal situation is called Living With Childhood Cancer.  It is full of incredibly useful information, especially helpful at the beginning of our journey.  I do have several copies of this book if anyone reading would like a free copy.  Sometimes it’s just nice to be a little more informed.  It’s a confusing and frazzling time.  Clear information is great.
  13. Seek second opinions.  Doctors will not be offended if you do so.  It’s fairly common these days, especially when a treatment option is intense or has many potential risks or side effects.  When all is said and done, you will feel relieved that you explored all options, especially if things don’t go as planned.
  14. Understand the risks of treatment.  Ask and go into detail about all the risks of the proposed medical care.  I’ve been in the situation where I was so excited and hopeful for a positive result that I payed little attention to risks and did not fully question what could happen.  I’ve regretted this decision and wish I could change it to this day.  Do yourself a favor and explore everything.
  15. Pay attention to controlled substance prescription refills.  Pain medications are highly controlled and monitored substances.  There are strict rules about prescribing them and it’s not easy to get refills or help if your treating physician is unavailable due to vacation or weekends or emergencies. This can be a nightmare. Going without certain pain medications can cause serious withdrawal symptoms.  Be sure to note when you will run out and confirm that you have access to refills.  If not, connect by telephone or secure an appointment with your treating doctor before you run out.  Other doctors will be very hesitant to help you, even doctors who have known you and your medical situation for a very long time.  Also be aware that transferring these prescriptions out of state will have different laws attached.  Check into those rules if you find yourself changing states.

I am certain there are many more survival tips and if any come to mind, please let me know.  I’d love to add to this list.  I wish you or your loved ones the best of luck in navigating the medical world.  Hopefully you won’t encounter problems along the way, but it’s always best to be prepared to improve the odds. Stay strong and know that so many people out there care – including me!



Childhood Cancer Reaches Capitol Hill (Patients and Families Unite for Change)



What an exciting and meaningful few days!  My son (Jake) and I recently went to Washington D.C. to help advocate for important legislation before the Senate and House that would have a sweeping impact on the fight against childhood cancer.  What we didn’t realize is that in addition to taking on important issues for the cause, the powerful experience itself would be so emotional and inspirational.

We initially gathered with some 200 people on April 23 for advocacy training organized by the Alliance for Childhood Cancer.  Those 200 people were made up of childhood cancer patients and survivors, family members, researchers, lobbyists, medical professionals, staff and a United States Senator.  The group traveled from 37 states all for a unifying cause — to make the future better for children fighting cancer.  The bond in the room was palpable.  Each person there had been directly impacted by childhood cancer somehow.  My son Jake has been a patient for over 13 years fighting his initial cancer and debilitating side effects.  I have been by his side each and every day, wishing I could do more!  The opportunity presented through this impactful advocacy group allowed that wish to be granted.  It provided a way to become an active participant in making things better for all of the brave children diagnosed with childhood cancer.

The issues and advocacy training day was awesome.  We learned a great deal about past and current legislation along with general medical information and advocacy techniques.  It was our first time attending so we were truly thankful for this help.  Little did I anticipate, we were called on stage to share our cancer journey and engage in realistic role playing activities in front of all participants.  I was frazzled from a heavily congested drive into D.C., but found it surprisingly easy to wing it.  I think that when you live each day dealing with the challenges presented by this awful disease, telling the story becomes second nature.  For better or worse, it becomes part of who you are – for the patient and parent(s). As the next two days unfolded, that became more and more apparent.  Other participants introduced themselves readily, shared their stories, and graciously complimented our brief “on stage” appearance.  We have all faced this dreaded disease.  We have all worked through fear and immense difficulties.  We all understood the dynamics of pain, family disruption, intense worry, financial concern, immense love, sadness and so much more.  For that reason, we became instant friends fully committed to making a positive change.  Smiles, hugs and shared contact information became the common theme of the day.

The next day we proceeded to Capitol Hill together to meet with legislators to encourage passage of the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act introduced by Senator Jack Reed.  The STAR Act is the most comprehensive childhood cancer bill ever taken up by Congress.  Major components include: (1) widely expanding opportunities for childhood cancer research; (2) improving childhood cancer surveillance through tracking incidences and collections of cases, including biospecimens, into a national registry; (3) improving the quality of life for survivors (2/3 of survivors suffer from serious after effects); and (4) ensuring pediatric expertise at the National Institute of Health.  It is important to note that childhood cancer is severely and grossly underfunded currently.

Fortunately the bill had already been passed by the Senate and had over 80% support in the House at the time of our venture.  The main goals of our efforts were to gather additional support in the House, to encourage leaders to bring the bill to the Floor for the official vote, and to appropriate the funding needed to make the provisions of the bill a reality.  All of these aspects are crucial and not to be taken lightly!

Our passionate group set out to bring a face to the bill.  We sought to inform the members of Congress of our individual stories and to remind them of their power to truly help fight childhood cancer – a devastating disease that horrendously impacts thousands of innocent children as well as their families, caregivers, friends, neighbors and entire communities.   Cancer is the #1 disease-related killer of children in the United States and more than 379,112 survivors live amongst us, many of which require serious aftercare.  These children deserve a voice and they deserve better.

The day was long, powerful, rewarding, tiring and unforgettable.  Senators, Representatives and Staff Members were extremely pleasant and positive.  Children could be seen cruising the long hallways in wheelchairs, braces, masks, bandages, some displaying limps, prosthetics, hats, bald heads and obvious disabilities.  The evil cancer causing these visible impacts could not dampen the spirit and resolve of the Alliance for Childhood Cancer advocates.  It was a hopeful experience, and an honor to be there championing this crucial and personal cause.  Most people spent the entire day meeting with important decision makers and legislators.  Everyone left feeling tired and drained, but with happy faces and full hearts.


TALES FROM THE TRENCHES -Brutal And Beautiful Moments From A Pediatric Cancer Floor


[Pictured:  Jake at age 5 and 18, bravely fighting his battle]

Overwhelming and surreal.  That’s a good way to summarize a prolonged in-patient stay on a pediatric cancer floor. There’s a world you enter that doesn’t feel like reality.  Everything else fades away.  You feel emotions — a diverse and crazy bundle of fear, love, sadness, hope, faith, trust, worry and more, but your attention remains inside that bubble.  You only feel the consuming and instinctive focus on your child.  The emotions are so strong that exhaustion sinks in, but you aren’t really tired.  You survive on adrenaline, I suppose.  It’s powerful.  Your child needs you and you are there 100%.  The experience stays with you — in both haunting and uplifting ways.


We were just in the hospital for almost four weeks.  The same cancer hospital on the same pediatric cancer floor where we began our journey 13 years ago.  Jake was 5 years old when he was diagnosed with cancer (leiomyosarcoma) in his foot.  He had just turned 18 before this recent surgery, so much older, but those parental emotions had not changed.  That instinct to care for and protect him remained as strong as ever.  Because of the seriousness of his surgery and several complications that arose, this was the hardest hospitalization we’ve had to date (out of more than a dozen).  Unexplained high fevers, serious infection, medication problems, constant IV problems, and severe pain made the initial recovery all the more difficult.  To complicate matters further, we had to stay awake around the clock (for four weeks) to monitor Jake’s tissue transplant site to make sure the blood supply was not interrupted.  At best, the consequence of failure would be a risky 12+ hour surgery in an already weakened state, but more likely a full amputation of his foot.  Needless to say, the stress levels from the seriousness of it all, combined with next-to-no sleep, created an incredibly intense situation.  I stayed with Jake pretty much 24/7 for the entire month he was in the hospital.  Luckily, his dad was there to help for ten days and my sister was there for the remainder. We are now home and so thankful that Jake’s transplant is no longer vulnerable to failure.  He still has a long way to go for total recovery … but something has been pulling me to write about the experience.

I’ve been trying to figure out why I want to write and what exactly I want to relay.  There are so many dynamics of the situation, so many beautiful, inspiring, powerful and heartfelt moments.  There are so many sad and devastating moments as well.  The situation changes you – your perspective, your focus, your appreciation, your patience.  Some of this is good, I think.  Some of this I wouldn’t wish on anyone. Overall, it’s a unique story to be told.


I’ve decided to begin with some of the joyful moments to lighten the tone here a bit.  While every child on the floor is struggling with cancer or a medical need arising from it, there is an unbelievable testament to the human spirit that exists. Children, parents, doctors and staff seem to rise above and make the best of it all.  In spite of the fear and pain, you still see laughter and smiles.  Overall, you see kindness.  It’s overflowing.  Everywhere.  I’m a firm believer that kindness makes the world go around so this truly touched my heart.  It was almost palpable and it was beautiful.

Parents of all different cultures populated the halls or kitchen, or waited in line for one of the two bathrooms.  There was a quiet camaraderie among the parents.  We all looked (and clearly felt) fairly shell shocked, but we all soldiered on for the sake of our children.  Parents smiled politely to one another, or shared tales of their child’s journey, or offered words of love and encouragement.  I’ve never seen such kindness among strangers as I have on a pediatric cancer floor.  The little burdens of everyday life or the differences between people just don’t matter.  It was clear that a shared love and concern for your struggling child takes center stage and bonds you in a unique way.

There were so many touching and heartfelt moments that it’s impossible to share them all.  There were encouraging signs written on young patient’s windows — YOU GOT THIS, FEARLESS, FIGHTER, and more.  [Incidentally, our favorite sign made us giggle each time we walked by.  It had serious rules in small writing – high risk: must wear mask, wash hands, etc. Above those, however, in huge writing it said NO CLOWNS.  That fear of clowns (understandable in my opinion) trumped the medical directions!]   There were flowers and balloons everywhere.  There were children with little-to-no hair skipping down the halls as parents chased them.  There were famous visitors who took the time to bring smiles to the children’s faces.  There were family and friends coming and going to lend support. There were homemade buttons, wristbands and shirts with sayings like #teamjake.  There were volunteers helping in every way imaginable.  There was a candy cart that went room to room with an incredible assortment of free snacks.  There were donated knit hats for the bald patients.  There were happy deliveries of packages and mail.

The sweetest and most specials parts though involved the people.  Our absolute favorite person was a loud, feisty Ukrainian nurse’s aide I will call Alice.  She was awesome!  You always heard Alice when she entered the room.  She called the kids “sweetheart” or “my love” in her thick accent.  She made them feel special even when she was doing the most unpleasant of jobs.  At one point, Jake’s doctor was called away for a family emergency.  His partner was supposed to take over care.  When Alice came the next day she immediately asked if the new doctor had come and what he had to say.  When we told her he never made it, she blurt out (in her strong Ukrainian accent) “that fucking asshole.”  Her intense response surprised us and made us all laugh, but we were touched that she cared so much.  She was irate again days later when another nurse failed to give Jake his bath (though for good reason).  She noticed that his hair did not look clean and immediately began mumbling and cursing under her breath.  “This is not acceptable.  My love needs a bath.  I will do it right now.”  Jake was not even her patient that day, but she went out of her way to make sure that he was properly cared for.  Every day, in her unique and protective ways, she made our lives a little better.

Another bright spot in the journey was a handsome and highly fashionable doctor who lightened the room the moment he entered.  He was silly and hysterical.  The best example is demonstrated in how he responded to Jake’s task of “dangling” his foot at controlled and short intervals to help restore normal blood flow to the transplant site.  The first time Jake did it, Dr. G said “OK, I’m supposed to ask how the dangling went, but can’t stop giggling about it.  I have the mind of a teenage boy and the word dangle just brings up other images to me”.  He indeed giggled about it every single time – and so did we.  His silly humor was amazing medicine in light of the difficulties.

We constantly encountered special people in all areas of the hospital. A male nurse and one cleaning lady always stopped to talk with Jake about basketball when he was feeling up to it.  Another cleaning lady cheerfully mopped and changed trash announcing how happy she was to make the space more pleasant for us.  A doctor drew tattoo-like pictures on Jake’s leg to add some fun to the crisis.  A nurse practitioner who, despite her busy schedule, sat for 45 minutes and cried with my sister when things were tough.   The nurses or other workers who constantly spent time with us, sharing their own stories, giving out hugs, and helping us not feel so isolated.  This list goes on and on.  The people in the hospital (including parents and workers at every level), with their positive attitudes and overwhelming kindness, made a very stressful and exhausting situation so much more bearable.


Unfortunately, incredible sadness and heartbreak permeate a pediatric cancer floor as well.  There is no escape from the hardship these children face.  There are varying degrees of severity, but each child is struggling.  Some are pale and weak.  Some are vomiting or crying.  Some are bandaged and bloody.  Some can’t walk.  Some can’t leave their rooms.  You have a deep pit in your stomach and desperately wish you could help.  Children should not face these horrors.  No one should face these horrors, but especially not children.

Of course, watching your own child in tremendous pain or feeling sick on an unparalleled level is gut wrenching.  You’d give anything to make them better, but you just have to stand by offering love and encouragement, praying for the best.  In addition to the traumatic medical situation, the children are all struggling with their absence from the normal world too.  They miss their friends, their homes, their families and pets, their every day lives.  They are frustrated that they can’t participate in normal activities. The physical and emotional challenges these children face are terribly unfair.

I mentioned that Jake had just endured his most difficult surgery and hospitalization to date.  I kept a smile on my face for his sake, but it devastated me.  I watched helplessly as he bravely faced ongoing and incredible pain, exacerbated by one challenge after another.  I constantly marveled at his courage and his kindness toward everyone around him though, even when things were at their worst.   It’s such a horrible feeling to witness someone you love hurting so badly.  Sadly, there was a similar tale in every room.  We remained very aware of the suffering all around us.

A little girl down the hall was in isolation, but you could see her through the room window.  She looked weak and frail.  She had family with her at all times.  One day we heard doctors talking about a certain treatment plan for her.  The next day, we saw at least a dozen family members and friends who had come to say good bye for the last time.  They were all in tears and hugging one another.  The next day, her room was empty.

One of Jake’s roommates was a sweet 18 year old boy who had just joined the Navy when he learned he had terminal cancer.  He was only given three months to live by his hometown doctors, but had come to New York because options were available to help prolong his life.  He had already made it past the three month prediction, but he was very, very sick.  He had surgical wounds, equipment, bags and tubes everywhere.  His family didn’t stay with him much and he was very often alone.  He’d ask us to open the room dividing curtain so he could be with us.  He also called to us through the night for help.  Eventually he contracted a serious infection and had to be isolated.  It truly broke our hearts to know he would be by himself.  It was hard to leave him and change rooms, but there was nothing we could do.  We were so glad when Jake heard from him a few days ago.  He’s still fighting, but we desperately wish there was more that we could do.

You can’t help but wish you could do more for all of these kids. Cancer is unfair and it’s brutal.  The pain, sorrow and fear are devastating.  The children who struggle through the treatments are true heroes.  The doctors, nurses and hospital workers are heroes as well.

My sister (who selflessly stayed in the hospital with us for three weeks) posted something on social media that speaks volumes. She was partly (and very kindly) referring to us, but her words capture so much of what takes place.

What is courage??? Courage is knowing the only way to take a step forward is fighting your way through the grueling pain that comes with the medical treatments that will make you better.  It’s doing so with so much good spirit that the nurses literally fight over who gets you for the night.  It’s taking every set back with grace.  It’s watching your child suffer and still smiling and helping the others around you who are also in your situation. I am so proud to be related to Cindy and Jake and so honored that they trusted me enough to be their wingman.  My heart goes out to them and all of the wonderful and courageous people we met these past weeks.  We have seen things no one should ever see … my heart goes out to all who have been touched by this awful disease, especially the children on the 9th floor.

Certain words stand out to me — courage, grueling pain, suffer, smiling, trust, heart, awful disease.  The strongest feelings and words are represented on a pediatric cancer floor at all times.  It is indeed a mix of brutality and beauty.  You see the strength of the human spirit and limitless love and kindness.  I try to focus of those aspects and continue to seek the light.  I don’t always succeed and there are definitely moments of pity and sadness, but I try.  I think I’ve realized why I felt the need to write about this: to remind myself (and maybe others) that in spite of a very harsh world, its so important to lead with kindness, gratitude and love.  In the end, that is what matters most.






A Mother’s Confession – The Sadness Behind the Smile

12900204_10208874267804724_503244059_nThe good, bad and ugly of coping with a child’s serious illness

Preface:  I have been wanting to write about these topics, but have been resisting because I didn’t want to sound like a complainer or overly dramatic.  Just recently, though, my oldest son (the cancer survivor) said to me that I shouldn’t sugarcoat what this situation is really like.  He talked about how important it is to be honest if we want to truly connect or inform.  This boy of mine never ceases to amaze me.  So I am taking his advice and truly opening up. 

Life can be wonderful!  But let’s be real.  Life can be fairly complicated and messy as well. Add in a serious childhood illness and it’s a whole new reality.  You still have to juggle every day life – family, finances, career, friends, school, emotions, household, and more.  The earth keeps spinning, but your life has a new dimension.  There is a deeper issue now.  One that you never thought would happen to you.

Truth be told, I think I changed forever the day I learned that my son had cancer.  Nothing was ever the same again.  I was never the same again.  Since that day, more than 12 years ago, I’ve been facing an unending array of emotions that include worry, fear, anger, frustration, sadness, bitterness, jealousy, and uncertainty.  That’s not easy to admit because those are not very pretty things.  At the same time, I’ve been trying to smile and hold my head high.  Keep it all together.  Stay positive.  For the most part, I’ve forced myself to see the good in things and create a happy daily life for my kids.  I’ve written already about how important it is to be a joyful, approachable and safe haven for your sick child (and other children).  I even try to go out of my way to create joy when things are hard.  It’s not easy, especially because there are so many unhappy things going on, but I wouldn’t have it any other way.  I will always keep trying.

I wanted to write this blog because I realize that in all these years, there are many things I’d like to say to people in my life and the community as I’ve struggled with my son’s medial diagnosis and care.  These things are personal to me, but I imagine that a lot of parents with sick children have some of these feelings as well.  No matter how people feel,  I encourage sharing with others.  There is something very healing about opening up.  And I think you’ll find that people are receptive and want to understand.  I’ve come to learn that there is absolutely no right or wrong way to handle a child’s serious medical condition.  We all do the best we can.  And the most important thing is to support one another.

For my own sake, but also to just alert people to some of the issues facing parents of seriously ill children, I wanted to say a few things that I’ve always want to relay.


The emotional task of caring for a child with a serious medical illness is indescribable.  Don’t we all just want our kids to be happy and healthy?  That’s what it boils down to.  That is the most important thing to any parent.  When these two crucial elements are threatened (happiness and health), especially on a long-term and consistent basis, it takes a huge toll.  As mentioned, every single day I try to be positive and upbeat for myself and my family.  There is an absolute sadness behind my smile though, almost at all times.  There is a very true saying- A mother is only as happy as her saddest child.  Some days are better than others.  When a child is dealing with cancer care (or any serious illness), painful side effects, constant fear of cancer recurrence or other medical issues, missing out on every day activities, falling behind in school, coping with sadness or stress, the parent carries the burden as well.  It’s especially hard to sit back and just watch all of these things happening.  Your protective instincts want to make it better for your child, but you can’t.


So many times I have thought of the situation as similar to grieving.  There are definitely different stages.  I think every parent goes through some form of shock, sadness, anger, frustration and helplessness.  I assume at some point the stage proceeds to acceptance, but I’m still waiting on that one.  It feels impossible to reconcile how something so tragic and hurtful can attack your innocent child, especially when it’s for a very long time. I wrestle constantly with how this can happen.  How do you begin to understand?   If you see me at a time where I seem withdrawn or sad, please understand that it’s quite possible that I have been struggling with some aspect of the trauma facing my child.  Even when a child is not currently undergoing intensive medical care or hospitalization, there are so many physical and emotional side effects that continue on.  Some days are just very hard.  They are hard for my son and for me.  We don’t talk about it constantly, but there are almost always some side effect issues lingering, not to mention concern about upcoming medical needs.


One of the ways I have tried to make sense of it all and cope with the frustration is by trying to help others facing medical battles.  You can’t ever change the fact that your child has been given this difficult fate (nor possibly ever understand it), but you can try to make it better for him and for others.  At least then you are doing SOMETHING.  It’s a bit of a tonic for the otherwise helpless reality that you can’t take away your child’s diagnosis, pain or emotional struggles.  It’s also a way to give back when you feel like so many people have gone out of their way to help you.  It’s truly a gift to be able to relieve some of the burden for others in the depths of difficulties.  That is why I created the Maynard Childhood Cancer Foundation and Jake’s Reindeer Race.  To this day, everything we’ve done under those umbrellas has helped ease the sadness in some way.  And hopefully it has helped others as well.


Another huge thing I want to say is thank you!!  Thank you again!  I couldn’t say it enough.  The kindness, concern, care and help shown to me and my family has been overwhelming and extraordinary.  Not a day goes by that I am not thankful for every single act of kindness, even just a smile or “I’m thinking of you”.  It truly envelops my heart.  I don’t know how we could have made it through everything without the love and help from so many.


Along those lines, though, I’m distressed that I haven’t been as good as I’d like about expressing my gratitude.  I have been remiss about sending formal thank you notes quite often.  I know I should have done a better job and if you are somebody that didn’t receive one from me, I’m very sorry.  My appreciation for the kindness shown is truly huge, but my energy reserves are not always there.  My mother in law is always so good about sending thank you notes and expressing gratitude.  She even preached a sermon about it a few weeks ago.  I sat cringing in my pew seat once again feeling guilty for not being as diligent as I should have been.  Please know, however, that I feel thanks to my core for all of the acts of love that I (we) have received.


Believe it or not, there are some expectations that seem to exist for patients and families enduring a serious medical illness.  Perhaps these are self imposed expectations, but they exist nonetheless.  Our world seems to celebrate people who rise above challenges… they become the stars of movies, the heroes of literature, the subjects of inspiring news reports.  I’m the first to agree that anyone who can persevere with courage, strength and positivity deserves praise.  Unfortunately, this reality has always caused me to feel that I must rise above my son’s medical challenge with a smile on my face at all times.  I fear that others facing similar situations might feel it as well.  Maybe it’s not a bad thing though.  Maybe those enlightening stories show us that we can make it through.  But it’s hard sometimes when you feel that you have to always stay strong.


Sure, life is no longer “normal”, but it’s our normal.  There are doctor appointments, surgeries, tests, ongoing pain, sleepless nights, intense worry, missed school, missed time with peers and normal activities, required medications, therapy … you get the idea, plenty of things that don’t fall into a regular normal childhood.  This doesn’t even include the difficult impact it all has on other siblings and how those sweet children need additional attention as well.  So what do we do?  I have tried to take advantage of every good opportunity that now comes up.  I don’t know if I’m trying to make up for lost time or simply appreciate what’s now possible.  Either way, a new door has been opened.  I try to make sure we celebrate our lives.  We accept more invitations, go to concerts, open up on social media, connect more with friends, knock off bucket list items, take more vacations, and generally try to live life to its fullest.  Life now feels more fragile.  Health and longevity are not a given.  In turn, that has made me want to fully appreciate all of the love, opportunities, and potential for adventure that come our way.  These things also help fight the underlying sadness and make a positive attitude more possible.

It’s a big, complicated mess.  There is good, bad, and ugly.  I suppose that’s true about life in general.  I have learned that it’s important no matter what we face to stay connected with one another, be real with our feelings, support others who are hurting, and keep fighting against those darker days.  Even when there is suffering and sadness, it’s crucial to keep searching for the light.

Hearts & Smiles – Secret Weapons


HEARTS & SMILES – Secret Weapons

Practical and Unusual Ways to Navigate a Serious Childhood Illness

Hearts & Smiles?  What in the world can these have to do with a serious childhood illness?  Having your child face a difficult medical struggle is brutal and heart-wrenching.  That is absolutely true, but stick with me.  I’ll explain with a story.

Many years ago, my sweet five year old son (Jake) was a patient at Memorial Sloan Kettering Cancer Center in New York.  It had been a grueling few weeks and he looked completely miserable.  I didn’t see the happy, carefree boy I had known before.  Pain and fear had taken over.   I felt absolutely helpless and wanted nothing more than to make things better for him.  We were all afraid, stuck in a cancer hospital, and there was not much that could be done.  I was just looking around, exhausted, and there it was — something small and something silly!  I’d noticed a smiley face hidden within the parts of a medical machine.  I said with a half-hearted, forced smile on my face, “Look Jake!  See that face there?  It’s smiling at you!”  He gave me the tiniest smile back (finally, he smiled!) and my heart leapt.  My mission became clear.  I was determined to find every hidden happy face in that darn hospital.  It’s amazing how many you can find when you need to.  Jake actually grinned each time and also joined in the hunt.  We searched for smiley faces everywhere, and eventually hearts as well.  We talked about the fact that no matter how hard things are, you can still find happiness somehow. Those discovered happy faces and hearts somehow embodied actual and symbolic joy and love for us.  More importantly though, we found a distraction, a small unified goal, and something to remind us that we didn’t have to let the horrific situation control us.  To this day, more than ten years later, we still look for random hearts and smiley faces.  In fact, friends now send us pictures of their finds from all over the world.  Each and every one reminds us to live our days seeking some type of happiness no matter the circumstance.

So what’s the take away here?   Even when confronted with a frightening and difficult childhood illness, seek love and joy in every way possible!  Look for anything to ease the stress of your child’s medical situation.   You could find hearts and smiley faces of your own.  Or do something else.  Think outside of the box and don’t feel trapped by your situation.  Of course, a substantial childhood illness is still very serious and you can’t (nor should you) completely escape that reality.  But it can be indescribably helpful to lift your child’s spirits along the way.  It’s actually good for everyone involved.

Much of this is certainly instinct.  But, on the other hand, it very easy to get lost in the sadness and anxiety of the situation.  The pain and emotional turmoil you experience as a parent cannot be diminished.  However, even though it’s hard, you CAN pick yourself up and do things to create a more positive atmosphere.  Just make it a priority.  Do it for yourself and  for your child.  There are a lot of practical ways to begin if you just commit to trying.  Even the smallest efforts can have a good impact.  Here are a few simple ideas:

  1.  As suggested, find hearts and smiley faces in random places.  Find anything you can think of.  Make a game out of it.  Play “I Spy” or any alternate version that comes to mind.
  2. Turn to the entertainment often available in hospitals like movies, books, board games, words searches, video games.  Of course, every parent decides what is best, but we relaxed our rules and let our son watch the previously forbidden Teenage Mutant Ninja Turtles cartoon tapes!  Jake was so thrilled to have this pass that he was happy for days despite being hooked up to three different medical machines.
  3. Get creative and make something silly with your child.  Phone apps now have all kinds of options.  You can do karaoke with your child.  You can make short lip sync videos with Dubsmash.  You can play with photos.  You can create a large mural for the wall with just paper and crayons.
  4. Explore YouTube or Vine for funny videos.  You can request friends and family to find good ones for you.  They’d be thrilled to help, and something small and uplifting like this can easily change the mood.  In addition to being fun, older kids will appreciate being kept in the loop about what others are watching.  Younger kids will just enjoy something funny and interesting to take their mind off of their illness.
  5. Ask friends or family to write short stories or notes about anything that might be interesting.  Funny things that might have happened to them, a fun poem, a note about what’s going on in the outside world.
  6. Ask friends or family to send pictures or videos.  This is so easy  with smartphones.  A good idea to brighten your child’s day is to have his or her friends create a small video to let your child know they are not forgotten.  The friends can all just say hello and wave, they can sing, they can chat about the day, they can do a skit.  Anything will help!  Being sick, stuck at home or in the hospital can be lonely. Just ask friends to help.  Quite often they don’t know what to do and would be thrilled with a suggestion.
  7. Find silly things in the hospital to provide entertainment.  Practice throwing items into a cup, even a balled up piece of paper.  See how many you and your child can make in a row.  We actually filled syringes with water and sprayed them at each other.  Many of the nurses allowed my son to spray them.  It was a huge tension reliever and the staff was eager (and wonderful!)  to play along.
  8. Check out the hospital gift store, local drug store, or ask a friend to bring some simple items for “busy work” like word searches, crossword puzzles, coloring books, Soduko, Mad Libs.
  9. Create experiments or treats with foods.  Try something new, order that fancy dessert, have taste tests (sampling all the types of chips in a vending machine, different Jellos, various fruits, anything).  If you are daring, try Bertie Botts Beans from Harry Potter!  These have regular flavors and also terrible flavors all mixed together (think earthworm, ear wax, and worse).  They provided great entertainment as we dared one another to take a turn.
  10. Get to the know the nurses.  Connect with other patients and families if you can.  If you’re at home, let people know when they can visit or call.  A childhood illness can be isolating.  Any connections with other people can help.  Keep in mind that many people will try to give you privacy if you don’t reach out first and invite their presence.

There are so many simple ways to keep your child’s mind off the pain, uncertainty, or sadness.  There are countless ways to create some joy during a day that could otherwise be filled with unhappiness.  Nothing can take away all of the trauma, but making the effort certainly can’t hurt.  In fact, once you start down this path, I think you’ll find that hospital staff will even join in.  Friends and family are more apt to get involved.  You even start to feel the mood shift and the true smiles and joy start to grow within you.  This, in and of itself, is a medicine for healing.

I touched upon this in my last blog, but the one thing that kept me going through my son’s long cancer journey was the thought that I never wanted to waste a day with my child.  I didn’t know how much time he had left and decided to cherish every moment we had.  I sought to find love and joy in more ways than hearts and smiley faces, but they were a good start!  Little did I know that they were the ultimate secret weapon – trying to find happiness in a frightening and difficult situation.  Good luck finding your secret weapon!

by Cindy Maynard, written with love and hope

I am the mother of three boys (including one brave cancer survivor).  I am a lawyer, children’s medical advocate, crazy Kentucky basketball fan, and the president and founder of the Maynard Childhood Cancer Foundation.  Please visit http://www.helpkidswithcancer.org if you would like to learn more about our journey.





Inhale. Exhale. Repeat.
You can do this.
You are stronger than you think.
And your child needs you.

Nothing can truly prepare you for the moment that you learn your precious child is in medical danger. Your instincts to protect your son or daughter at all costs are thrown into turmoil. You can’t fix this – cancer, juvenile diabetes, genetic disorders, the list goes on and on. If your child, or a child that you love, has been diagnosed with a threatening medical issue, your world has just changed and your mind is probably reeling.

First, know that I am sincerely sorry your child is in harm’s way. I know how hard this is, I really do, but I also know that you can get through it. Second, I want you to know that you are not alone. You will be amazed at how many people care and would like to provide support. Third, I am here to offer some thoughts to help clear your head and possibly help you feel better prepared for what lies ahead. Nothing will fully prepare you, I know. I vividly remember that when my son was diagnosed with cancer at age 5, I was so afraid. I felt alone and scared and didn’t know where to turn. I was desperate to find information on how to cope, but very little existed. That is exactly why I decided to write this blog and why I hope that it can be helpful to others facing a child’s diagnosis.

What follows are some general things I learned along the way – from my own 10+ year journey with a child’s medical crisis, from working within the children’s medical illness field, and from talking with countless families facing similar struggles.

Make the best of it

When your child is suffering, it just sucks. There is no way around it. Your heart is worried and broken. That doesn’t mean that you can’t make the best of it. Remember especially that your child will read off of your emotions. The stronger you appear, the more peace and confidence he or she will feel. Although it’s hard, I promise you that joy can still be uncovered if you allow it. Some of the most tender moments can occur in a hospital. Reflections of beauty and wonder can be found anywhere. Try to remain open and positive. This small act can have a huge impact on morale for everyone involved.

Soldier On

Keep your chin up. Power forward. Keep on keeping on. While these little mantras may sound trite, they are actually quite applicable. You are faced with a traumatic ordeal. You unfortunately can’t change the diagnosis, but you can change and control the way in which you approach it. Know that you have it within you to persevere with strength and courage. Have faith in yourself. Yes, there will be days that you feel you just can’t handle it. Even in the best of times, those occur. But remember that you just need to soldier on. Give yourself a pep talk!  Maybe even create your own mantra. Just commit to caring for your own mental well being along the way.

Reach out to others

So many people care in these situations. Allow them to help. It’s good for them and it’s good for you. Those meals that southerners so often bring when a person is in crisis can do wonders. It’s not just the food. It’s a constant reminder that someone cares. Take people up on offers to provide assistance. It’s okay to lean on others for emotional and practical support.

Don’t give up hope

Hope is a powerful thing. Harness it. Remind yourself of it. It’s very easy to get drawn into constant worry about the future and what will happen. Before you know it, those destructive thoughts can take over. Whether through prayer, meditation or just positive thinking, hold fast to the hope that you will get through this, your child will get through this. Hope can provide you strength to carry on.

Build a positive team

At Memorial Sloan Kettering Memorial Cancer Center, an expert told me early in our medical journey to surround myself with positive and loving people. She said that now was the time to rid myself of unnecessary outside distractions. This was excellent advice! My team included family members, friends, teachers, church members, neighbors, ministers, doctors and nurses. Each and every positive or encouraging interaction helped in tremendous ways. Stay open to these influences. Welcome them to your team.

Take care of yourself

I have to admit, I failed miserably at this. I ate poorly. I slept poorly. I stopped exercising. I never took vitamins. I barely drank water. I’m pretty sure I only had water if Diet Coke wasn’t available. I was a mess. On top of the emotional drain that existed, I felt absolutely terrible on a physical level. I didn’t care. But now I realize that I should have made the effort to do better, not only for myself but for my child. I wish I had viewed this as a priority because it would have made me a better caregiver. Please consider taking care of yourself as you proceed.

Last but not least! Never waste a day

This one is HUGE for me! It defines my complete approach then and now. When I heard the words “your child has cancer,” I was devastated. I literally felt myself falling apart. And then something happened. In the midst of my sobbing, I thought to myself … what if he doesn’t have much time left… what if these are the last few weeks or months I ever have with him? It hit me like a speeding truck. Make the best of this time! Try to feel the love between you. Try to laugh each day. Try to celebrate every single moment that you can. I knew that if the worst were to happen, I would absolutely never regret taking advantage of the time that we did have together, even if it wasn’t the best of circumstances. This approach gave me a purpose. It reshaped our days. It helped me and it helped my son. No matter what the outcome is, better or worse than imagined, you will never regret this path.

Overall, it’s a day by day journey. But you have the power to control how that journey evolves. Fear of the unknown, anger, sadness, frustration can always creep in.  And that’s completely normal.  But always remember – You can do this. And your child needs you!

by Cindy Maynard, written with love and hope

I am the mother of three boys (including one brave cancer survivor, pictured below).  I am a lawyer, children’s medical advocate, crazy Kentucky basketball fan, and the president and founder of the Maynard Childhood Cancer Foundation.  Please visit http://www.helpkidswithcancer.org if you would like to learn more about our journey.