Childhood Cancer Sucks.

Our Experience:?

LinkedIn articles tend to be business-focused, as they should. But sometimes what happens to you at home has a direct impact on your business life, and not insignificantly.? Some years ago, my youngest son Trevor was diagnosed with Acute Lymphocytic Leukemia (ALL) when he was 5 years old.? At the time, I was working for IBM in a role that required me to travel regularly.?

I don’t believe there is anything more world-shattering than hearing the words “your child has cancer.”? For me, those words came when I was away on a business trip and were completely unexpected.? At the time, we had no idea this was coming, as any symptoms Trevor was experiencing were explainable by other, more likely, causes.? So, it was with a crushing sense of “what did we miss” that I jumped in my rental car and drove home rather than wait for the next flight.? I recall very little of that five-hour drive, but I clearly recall how helpless I felt as I made my way to the hospital.?

Treatment was tough: 3 ? years of active treatment, which included 28 spinal taps, 4 bone marrow aspirations, 10 red blood cell transfusions, 6 platelet transfusions and 12 cranial radiation treatments.? I’ve lost track of the number of different chemo medications he endured, and even with the end of active treatment, the worry, concerns and health scares don’t stop.? So, mentally and emotionally, it is a marathon where even when you think you’ve reached the finish line, there is always the question – what might happen next?? Fortunately for Trevor, he is doing well, more on what he’s up to now later in the article.? Here is a link to some summary information about various types of childhood cancer, and the need for action: Education & Research - Children's Cancer Research Fund ( childrenscancer.org ) Also some good information at the American Childhood Cancer Organization: Home - ACCO ?

?

Managing Your Career and Your Child’s Cancer Treatment?

I was fortunate enough to work for a company with excellent medical benefits, and equally importantly a manager (Mary Sue Rogers , will always be grateful to you for this) who did everything she could to make a terrible situation more manageable for me and my family.? In hindsight, I probably should have taken family medical leave (FMLA), but at the time I felt that trying to stay engaged in my job would provide a much-needed distraction, and to be honest I did not have a firm understanding of how FMLA worked.? My first recommendation (for those in the US) would be to talk to your HR representative about how to manage FMLA time so you can focus on your child and support your spouse.? The ability to break your FMLA time into intermittent blocks is critical during a prolonged cancer treatment protocol – there are times when things get very intense, and other times when it is more ‘wait and watch.’ Here is a link to more information about FMLA and childhood cancer: How FMLA Applies to Parents of Children with Cancer - Together by St. Jude? ( stjude.org ) ?

I mentioned medical benefits – again, this is probably a very US-focused observation – and while having an employer who offers good coverage is a huge benefit, it won’t cover everything and it certainly doesn’t help when you have to manage the endless billings, reminder notices, etc.? During the course of our cancer journey, we got to know a number of families who did not have coverage, or extensive coverage, and put everything they owned into treatment for their child – as the vast majority of us would: it’s your child, you will do anything to save them.? As much as I’d like to go into a rant on how ridiculous it is that we still don’t offer universal healthcare in the US (at a minimum, every child should be covered!) 20 years later, I will stick with the program here.? There are many private organizations that will offer assistance funds to those who qualify, here is a link to a page with a good summary of some of those options. What If I Am Diagnosed With Cancer Without Insurance? - GoodRx ?

Use Your Support Network?

Beyond the medical and financial aspects, if your child is dealing with cancer, don’t be reluctant to look for support from family, friends, neighbors, or your church.? For us, we are not the type to ask anyone for help, so this falls into the “do as I say, not as I do” category, but we were lucky enough to have some friends and neighbors who wouldn’t take “no” for an answer.? In those early months, they arranged meals to be delivered to our house each week and took in our other two kids on a regular basis when mom and dad needed to be with Trevor during treatments or unplanned hospital stays.? (Laura DePrado , you were our rock in organizing neighbors, Boy Scouts, and others with the “meal train” – it helped enormously.)? People want to help, so let them!? That said, there were disappointments as well – for example, we thought our church would be supportive, but they were in fact the opposite, and made our lives more difficult.? Don’t dwell on the disappointments, focus on the love and support you do receive.?

If you have multiple children, please keep this in mind – cancer is not reserved solely for the diagnosed individual, it “infects” the entire family.? Your other children are dealing with this as well, and need support you may not (understandably) be able to provide as you focus on your sick child.? If possible, get them the additional support they need by engaging social workers or therapists to be their sounding board.? While they struggle with the loss of some level of attention from you, they also feel guilty about that loss, knowing their sibling is ill and they need to be supportive.? All of those feelings are valid, and they need a non-judgmental outlet to share.? Again, in hindsight, I wish we had done this sooner, so wanted to share that advice.? Additionally, there are organizations specifically focused on supporting siblings of children with cancer, here is a link to one: SibSpot | Alex's Lemonade Stand Foundation for Childhood Cancer ( alexslemonade.org ) ?

As a parent, also be aware of the mental and emotional toll on you – you are not immune to the effects any more than your other children!? Find outlets for those emotions.? For me, I found that blogging about Trevor’s journey (www.caringbridge.org ) , and sharing updates on his progress served two purposes: 1) it provided me with a way to process the information we were receiving, and organize my own thoughts, and 2) it provided a means of keeping all concerned or interested individuals updated without having to say the same things over and over as people asked for the latest news.? For my wife, she found some cancer-mom support groups that were very helpful to her – she still is in contact with those other moms today – and allowed her to gain more insight on the details of treatment protocols and new research underway. How to Find and Join a Cancer Support Group | CaringBridge ?

What Should Leadership and Executive Management Do??

While all of the above advice is intended for those parents who are dealing with childhood cancer, many of these observations should also be helpful to those who work with, work for, or have someone working for them whose child is diagnosed.? Leadership and Executive Management should look for ways the organization can support employees and their families during this time.? This effort can be managed through HR, but thought should be given to what kinds of support the company is willing to provide – can the company sponsor and organize blood drives?? Can employees be organized to provide assistance and support for the family, along the lines of what friends and neighbors might provide as well?? Of course, care must be taken to ensure privacy, if that is the priority for the impacted employee, but my experience has been employees are most interested in privacy because they don’t want to be bombarded with questions – coaching the team to give space when needed, and support as required, can be a valuable contribution from company management.?

What Should a Manager Do??

Some of you may have had your own experiences, which lend you empathy you can share.? I know for me; my experience changed the way I try to support my team members who are struggling with family emergencies.? But even if you have not experienced anything like this yourself, be sympathetic – no one asks to be in this position, and if ever there was a time your colleagues needed to know they have support, it would be now.? Personally, I don’t think anyone whose child is in cancer treatment should be put on a performance improvement plan – the plan is, get that child healthy again and performance will improve!? Our team members are, first and foremost, human beings – let’s treat them as such, and see the long-term benefits of truly being a ‘team.’?

What Should a Co-worker Do??

From a work perspective, be understanding of delays or missed deadlines, and see what you can do in advance of those deadlines to jump in and help.? Also, don’t exclude them because you think “they have enough to worry about” – most of the time, they will already be feeling like they are letting you down, so have the conversation and give them the option.? Check in, but don’t be offended if the parent doesn’t want to discuss – sometimes, it’s just too much.? Find out if they have a site where they are providing updates and make use of that.? Also, (and you will need to tread carefully here, everyone is different) don’t take “no” for an answer.? As a matter of fact, this may be one of those times “ask for forgiveness, not permission” applies – make that meal and deliver it.? Invite their other children over for a movie night.? Cut their lawn, bring down their garbage cans – there are many small things that can help, even if you might not realize they would be appreciated.???

?

In closing, just a short word – yes, Trevor is doing well and while his experience has no doubt changed him, I couldn’t be prouder.? He continues to actively support his friends who have fought, or continue to fight, this disease, and mourns for those friends he has lost along the way.? Every year (since he was 5 years old) he spends a week every summer at Camp Quality , offering a unique experience for kids like him.? Since he turned 16, he went from being a camper to a staff member for the camp and will continue to do so for as long as he can.? You can find him here on LinkedIn as well, if you’d like to ask him any questions, or just show support.?

Childhood cancer is an awful thing, but until we can end it, let’s all do what we can to make treatment safer, more effective and help these families get through what is likely to be the hardest challenge they have ever faced.?