Cancer is a Thief

Another school year has begun. Jack’s fourth grade teacher seems likes she knows her stuff. Right from the start she walked the kids through how to organize their day so that there are fewer opportunities to “forget” homework; they carry a binder with a planner inside and dividers for each subject. Every day the class reviews what is to be done that evening and writes it in their planners. Ms. A is helping them establish executive function skills, an area in which Jack has a lot of trouble thanks to cancer treatment.

In addition, she is starting off the year with light homework that is mostly review material. Which is great…

Except that Jack is struggling a bit with even this small amount of homework. He is fighting increased anxiety and having bouts of depression. By the second week of school, he was difficult to rouse in the mornings. He drags his feet getting ready to leave and is incredibly slow and distractible when doing any task. He complains of stomach aches or nausea a lot. He speaks of the pressures of being in fourth grade and he despairs about growing up.

My son has turned into Peter Pan.

Last week I met with Ms. A and the school’s new resource teacher to review Jack’s IEP. Afterward I felt exhausted and defeated. I’d tried to explain the issues we’re dealing with but they didn’t seem to grasp it. I guess that’s not a surprise – I feel like I am gaining new understanding all the time about why Jack’s experience with cancer has had such a profound impact on him academically and emotionally. The territory we’re in – that of a childhood cancer survivor – is relatively new in the grand scheme of things. Schools and even our oncology team are still learning what the long term effects of cancer treatment are.

As a parent of a survivor, I get a unique and up-close perspective (lucky me!). I’m only now really coming to understand that cancer is a time thief. This effect feels more pronounced with a child – a treatment that spans three and a half years impacts many more developmental phases in a child as compared to an adult.

Jack Kindergarten

Jack, age 5, first day of Kindergarten

In school and outside of it, Jack spent much of the last three and a half years in a haze. Compared to other kids his age, he didn’t play much of the time – he didn’t have the energy. He went from being a happy-go-lucky five-year-old to an intense and conflicted nine-year-old…he didn’t have much opportunity to be a kid in between those two points in time. He didn’t admit it at the time, but he admits it now: he was afraid of dying.

Academically, we are observing that Jack is missing some key building blocks for math. This past Thursday, we spent at least an hour together going over a fairly simple problem – 3,000 divided by 10. It was as if he had never divided before. And while he can answer 5×3 relatively easily, 5×30 is a whole different ball game. He hasn’t been able to connect increasingly complex math concepts with the basics.

Some of the building blocks are missing due to frequent absences from school for treatment or side effects from treatment. He missed half of kindergarten and started first grade a couple of months late because he had no ability to fight off illness. Once he was given the okay to go back to school, he rarely attended a full week until sometime in the later part of third grade. Generally if he was too sick to attend school he was also too sick (or just plain foggy-brained) to do any schoolwork at home. We did our best, but he was going at a snail’s pace while his fellow students sped along at school. When he did make it to school, he felt lost and like an outsider.

Other building blocks are missing due to the effect of chemotherapy on the brain. One of the key chemotherapy drugs Jack was given went into his spinal fluid and is known to cause learning problems in things like math and executive function. We were warned about this, but it’s not something we had the time to worry too much about because we were so busy going to and from various appointments and dealing with administering medications or battling side effects. We had limited emotional capacity for worrying about that, in any case. It was always in the back of my mind, but I had no choice but to push it aside and carry on.

Now Jack is faced with trying to catch up in an environment that barely acknowledges that he has fallen behind. He has to work much harder to stay on track – both to fill in the blanks and to learn the next thing.

Meanwhile, he has boundless energy, almost like he’s been saving it up all these years. He wants to PLAY and EXPLORE and TALK. But fourth grade is stricter, harder, has one less recess, and more kids per class. Fourth grade demands more maturity out of the kids and it just happens to coincide with a time when Jack is trying to shrug off the very thing that demanded maturity of him too soon and attempting to, essentially, recapture his youth.

Jack DC Ball Pit

Jack, age 9, in a giant ball pit in DC

Jack feels a sense of unfairness and has articulated it in his own way from time to time. “I’m dealing with cancer; why do I have to do homework?” is one line I’ve heard on several occasions. And there is the repeated refrain, “I don’t want to grow up! It’s too much pressure!”

It has taken me some time but I understand now. Three and a half years of treatment left Jack with only vague memories of what a carefree existence was like. He has his life, thankfully, but he also has PTSD and lives with so much fear. He can’t get time back – cancer has stolen his innocence and so much of his childhood.

Many nine-year-olds struggle with school and homework – in that, Jack is not alone. But Jack is the only one in his class (and, as far as I know, the only one in his school) who is dealing with those things while trying to make up for years of lost time and heal his soul. The school faculty have no idea how to help him.

Neither do I, really, but I won’t stop trying.

The Rest of His Life

We had our post-treatment conference with Jack’s oncology team last week. Each family unit was given an Off-Treatment binder.

binder

Right inside the binder is an Old Irish blessing:

May the road rise to meet you
May the wind always be at your back
May the sun shine warm upon your face,
The rains fall soft upon your fields.

We were given information on long-term follow-up guidelines, which includes the following:

  • Introduction to Long-term Follow-up
  • Emotional Issues after Childhood Cancer
  • Health Promotion through Diet and Physical Activity
  • Education Issues after Childhood Cancer
  • Male Health Issues After Childhood Cancer
  • Dental Health
  • Kidney/Bladder Health
  • Liver Health
  • Bone Health
  • Avascular Necrosis
  • Skin Health
  • Heart Problems Following Treatment for Childhood Cancer
  • Cataracts/Eye Problems after Childhood Cancer
  • Peripheral Neuropathy
  • Raynaud’s Phenomenon
  • Reducing the Risk of Second Cancers

Jack will continue with post-treatment check-ups for the rest of his life – he’ll be seen every month for the first year, then every 2 months for the second year, every 3 months for the third year, every 6 months for the fourth year, and then yearly after that. He will get blood tests run at every visit. Every 5 years he’ll also get an echocardiogram to monitor his heart for abnormalities that may show up.

Due to both the cancer itself and the treatment for it, Jack is at greater risk for developing all kinds of things, and the oncology team reinforced the fact that any time Jack goes to see a new doctor, that physician needs to be informed about exactly what type of treatment Jack received and how much. We were told that MOST physicians will need to be educated by us or Jack because most will not have ever treated a childhood cancer survivor.

In September (six months post-treatment), Jack will start the process of being re-vaccinated for everything he already received pre-diagnosis.

Kaiser sent a referral for a full neuropsychological evaluation with an outside psychologist. We’ve scheduled appointments for that after the school year ends since the testing takes 6-8 hours. It’s split into four sessions over about a month’s time, and the results will hopefully give us some insight into how Jack’s brain has been affected by cancer treatment and guidance on how to help him in school and life.

Now that treatment is over, a lot of our focus is on dealing with the emotional impacts of the last three years. We have an immediate problem to address, which is to figure out how to get Jack’s lab draws done. We were unable to acquire a blood draw last week because of the extreme anxiety and panic Jack experienced when we went to the lab.

Now, let me be clear: this is beyond fear – it isĀ Post-Traumatic Stress Disorder. Jack went into the lab armed with all kinds of tools to help deal with the pain of the needle (yes, we had the Buzzy!), but once he was in the lab chair and the tech started to prep him, something took over in his brain and he went rigid, started shaking and thrashing, and crying and screaming. He couldn’t hear anything we were trying to say to him, could not process our words, and could not be held still even with two of us trying. I put the Buzzy on his arm, and yet he kept screaming, “I need the Buzzy!” He just couldn’t even feel it – he was somewhere else entirely. The experience was a lot like his night terrors – we were powerless to help him and the lab techs ultimately decided it was not safe to try to stick a needle in his arm.

It’s heartbreaking to see Jack going through this. It’s also necessary to monitor his blood counts because if the cancer was going to come back, it’s prime time for it to do so now that the chemo is leaving his body. (According to the Dana-Farber Institute & Boston Children’s Hospital, between 15 and 20% of children who are treated for ALL and achieve an initial complete remission will have the disease return.) He still has complaints about feeling unwell from time to time and a CBC is the best way to see what is going on with him.

So we’re in search of a therapist who can help us. Unfortunately, this is not covered by our insurance. Kaiser has great mental health classes, but when it comes to long-term or intensive therapy programs, they are sorely lacking (they even have to refer patients outside of the system for the neuropsych eval, something that they do for every childhood cancer patient). Continuity of care only goes so far with them. It’s on us to figure out the best, most expedient way to get help without going broke. (And what if therapy doesn’t work? What then?)

Even aside from the immediate problem of getting Jack to be able to take blood draws, there are clearly emotional scars that need addressing. We’ve tried play therapy with an outside therapist and then short-term CBT within Kaiser and had limited success. Some healing simply takes time, but he will still need professional help to learn how to process his experiences and be less controlled by his anxieties.

So, treatment is over but life after cancer stretches before us. It’s a new journey – a better journey than the previous one, but not without its own challenges. Thankfully, Jack is a fierce and determined survivor.

TigerJack

“He’s watching us all with the eye of the tiger…”