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.

Try Not To Worry, She Says

I spoke with Jack’s oncology office yesterday and they let me know that his chemotherapy doses are being increased again.

Back when Jack got sick last August, the chemotherapy was stopped altogether until his immune system started to recover somewhat. Then he was restarted at less than half the dose he had been on previously. It has slooooowly been ramping up over the last eight months. He’s now on about 40% of the full dose of Methotrexate and 70ish% of Mercaptopurine.

Well, now he is apparently going from 40% and 70% all the way up to 100%. I was told that a recent test showed Jack’s thioguanine metabolites were low. I have no idea what that means, but apparently it’s indicative that he should be able to handle the chemotherapy increase (at least for the Mercaptopurine – I’m still waiting for additional answers on the Methotrexate).

I’m not so sure he can handle it, though. Jack’s health has been relatively stable over the last few months but with each dosage increase he’s needed an adjustment period even though the increases have been miniscule. But now the dose is basically doubling. For instance, he’s going from taking 4 chemotherapy pills on Monday nights to 8.5. (That’s just chemo – there are the three other medications he’s taking to manage side effects, putting the total number of pills on Monday nights to 13.)

His dose of sodium bicarbonate (which is supposed to help with the acidosis he’s had for months and months) was also increased this week. The acidosis seems to get worse in relation to the increases in chemo, and yet the oncologist says that this new increase in chemo “shouldn’t” result it the acidosis worsening. Considering that history has shown otherwise, I have no idea what to think about this response.

Anyway…I’m scared. I know partly I’m more emotional than usual because of the pregnancy, but also the multiple trips to the ER last year and the crazy amounts of antibiotics and the unexpected hospital stay are all things I absolutely don’t want to repeat. I know Jack doesn’t want to, either. I know this is likely the best way to keep the cancer away, but I also know it increases the risk of other scary problems like infection. Jack’s oncologist is either not good at explaining what the treatment adjustments mean or she’s lying, neither of which inspires confidence. We deal with frequent complaints of stomach pains, difficulty breathing, and other weirdness in Jack’s body, but right now it’s manageable. I’m not confident it will remain manageable after doubling the chemo.

“Try not to worry. Things are going well,” she said.

But I do worry. Even if things are going well right now, that doesn’t mean they will continue to…

Special Needs Life

  • Every 6 weeks Jack has an ophthalmology appointment to check on his optic nerve and make sure it hasn’t been damaged by excess cerebrospinal fluid.
  • Every 4 weeks he goes to the oncology clinic for a check-up and chemotherapy infusion.
  • Every 12 weeks the clinic appointment also involves a trip to the hospital for a spinal tap under anesthesia.
  • Every 4 weeks he goes in for a nebulizer treatment to protect his lungs from pneumonia.
  • He has blood drawn for labs every 2-4 weeks.
  • There are weekly dressing and cap changes.
  • Nightly flushes of the Broviac catheter.
  • Pills three times per day…

There are also the normal appointments with his pediatrician and dentist and optometrist that happen at various intervals.

We need to add occupational and/or physical therapy in there. We need to add therapy for anxiety, too. Oh and we’ve been meaning to get a follow up from the neurologist.

Can’t forget about the random trips to the ER or stays in the hospital.

Add in school and homework. Add in my own appointments, pets, a house and a full time job. There is just not enough time – or energy – for everything.

There is no time to LIVE. And I can’t afford to quit my job or get a nanny. I’ve done the math many, many times. (And, frankly, sometimes my job is a break from all the rest of it.)

For our family, some of this ends when Jack’s cancer treatment does. If we’re lucky, Jack will be completely cured and nearly all of it will go away – cancer will be a distant memory. That’s what we’re hoping for.

But I know there are so many families out there who don’t have an end in sight to the demands of special needs. I don’t know how you do it, day after day and year after year, especially those of you who see this and say, “that’s nothing!” Maybe, like me, you just do it and then marvel at all you accomplished after the fact. Or maybe you don’t even think about it.

In any case, I bow down to all of you out there living with special needs who have gone before us and will keep on living this crazy-making life. I’m in awe of all you do.

 

The Sensory Child Gets Organized [Book Review]

If you’ve been reading my blog this year, you probably know that we’ve struggled with sensory issues with Jack. We didn’t know whether these struggles were related to his fight with cancer (treatment can affect many things) or if the issues had been less noticeable earlier in his life because he wasn’t under so much stress. He’s always been a sensitive kid – I can remember setting him down on the lawn outside our apartment at nine months old and his look of consternation when he realized he was surrounded by pokey blades of grass. He kept trying to crawl away and shrinking back from the sensation of the grass against his palms. Frustrated, he started crying and reaching for me. After that I learned that if we put a blanket down on grass, he wouldn’t leave it – no playpen needed.

blanketingrass

When he wasn’t busy avoiding certain textures, he would sit and scratch his fingernails on others – which made me cringe. Getting Jack to eat solid foods wasn’t easy. He shuddered and gagged on so many textures. He also wouldn’t tolerate sticky or dirty hands and would hold them out and wave them at me while “uh uh uh”ing until I wiped his hands. This never bothered me – it was always easy to keep him clean because he would avoid being wet or muddy. It also never went away.

Later on, we noticed that he was sensitive to sound. He was easily startled and would cover his ears when a large truck passed by outside – even when we were cozily tucked into our house. He can’t STAND to hear me sing and will throw a fit until I stop.

He’s always had trouble with transitions, too. I don’t remember a time when I could just put a new pair of shoes on him – it’s always been a struggle. Coming home from a trip usually involved a meltdown, which we dealt with by sitting in a dark room together while I rocked and shhhhh’d him.

Many of these things have come and gone over the years and been fairly manageable. We just thought “that’s the way he is.” But earlier this year when clothing became such a problem that he was missing school, I realized maybe we needed help. We had him screened for sensory issues over the summer and there were several problem areas noted. We haven’t had a chance to follow up on the recommendations, though, due to Jack’s unstable health. Such is life, right?

When the offer to review the book “The Sensory Child Gets Organized” by Carolyn Dalgliesh came my way, I jumped at it. In between a zillion oncology appointments, I could get some useful advice that could help Jack in real time! Because while things like 504 Plans and IEPs will try to accommodate Jack at school, they don’t specifically address or help his sensory issues – only the fallout from them. I would love to PREVENT problems in the future.

Photo courtesy of Simon & Schuster

Photo courtesy of Simon & Schuster

First off, you should know that “sensory” children are dealing with a variety of issues – not just Sensory Processing Disorder. The book gives a great primer on what the various issues are and explain how they each impact children. Here are some statistics for you:

  • 1 in 20 kids have Sensory Processing Disorder.
  • 8.6% of kids are diagnosed with AD/HD.
  • Anxiety Disorders are diagnosed in as many as 1 in 8 children.
  • Currently, 1 in 88 children is diagnosed with an autism spectrum disorder.
  • As many of 50% of kids with a diagnosis also live with a co-existing condition
  • Most kids receive a sensory or special-needs diagnosis between ages 3 to 10 years.
  • Many kids will not be eligible for special services and parents need help supporting day-to-day life at home.

Sensory issues are not unique to one specific diagnosis. This struck me immediately because even if Jack does not qualify for a SPD diagnosis, there is still the fact that cancer treatments are known to impact cognitive function – particularly information processing, memory, and organization/planning. We need help in those areas and the book addresses them immediately, explaining in the section titled “The Sensory Profile: Different Diagnoses, but the Same Core Challenges” that the following issues are discussed inside:

  • Attention challenges
  • Ridigity/Infexibility
  • Anxiety and feelings of being overwhelmed
  • Social and emotional challenges
  • Low frustration tolerance and/or explosiveness
  • Executive function challenges

Jack deals with all of these to some degree. And as his parent I struggle to help him deal with them in the appropriate manner, especially because I am stressed about other things so often. I’m sure a lot of other families deal with these issues, too – not only those who have diagnosed conditions.

This book has pictures and suggestions for how parents can (EASILY!) help their children focus on what is important by eliminating other sensory challenges that overwhelm their brains. I love this! I am not by nature a very organized person – I am easily overwhelmed by clutter and mess. With that said, I did find that some of these suggestions are things we are already doing to help Jack (and ourselves, frankly):

  • Labeling toy bins so that he can quickly find what he needs without getting overly frustrated and giving up or throwing a fit
  • Calming routines before bed – we read three books and snuggle before saying goodnight – if we don’t, Jack will thrash in his bed unable to calm down and sleep
  • Picking out outfits ahead of time – this way he doesn’t struggle with the choice about what he “feels” like wearing
  • Sorting Jack-specific food and snacks so that they are easy to see and accessible – he has his own shelf in the refrigerator

Things I want to do still:

  • MORE labeling of bins and grouping of toys – according to Jack’s preferences
  • Rotation of bins so that he gets a chance to play with different toys
  • Visual instructions about the process of play (play, then clean up afterward)
  • Build a quiet zone where he can calm himself and feel safe
  • Buy tactile items – i.e. a bean bag chair and a mini trampoline – so that he doesn’t use our pets for this purpose

There are some fabulous suggestions for how to deal with homework, as well. Jack is easily frustrated and asks for breaks often, but we haven’t always been accommodating because we want him to hurry and get it done. But hurrying him tends to have the opposite effect – he gets more frustrated and ends up going slower because he’s overwhelmed. The book suggests building breaks into the homework time and offers ways to organize the homework load (i.e. do harder tasks first) and make it less stressful for the kids. I’m looking forward to trying these tips out this week.

And when I’m ready to delve deeper, there are exercises in the book to assess learning style, suggestions on organizations that may help, and even product recommendations. Can we say thorough?

If you want to check this book out, visit Carolyn Dalgliesh’s website to find out where to get your copy. And, hey, she has a Sensory Parenting blog, too!

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For purposes of this review, I was provided with a free copy of “The Sensory Child Gets Organized” by the publisher, but all opinions here are my own.

Learning After Cancer Treatment

Jack’s dad and I met with his teacher yesterday for a parent/teacher conference. I was a little apprehensive going in – not only do I have a slight issue with authority figures but I also worried about what we would learn about where Jack is academically.

On the positive side, Jack is in the top third of his class for his language and reading skills. He’s made a few friends and he’s already showing improvement in how he interacts with his peers compared to a month ago. And, of course, he’s quite the artist. He’s a good kid and sweet as can be. 🙂

There are some concerns, and Jack’s teacher is having the same difficulty we are in determining what the full story is on the issues that are cropping up. It’s really difficult to tell what is a side effect of current treatment and what might be permanent damage done to his brain from the intrathecal chemotherapy (that is chemo administered into the spinal cord). We’ve thus far gone with the “wait and see” approach. We’ve been given novels on the possible negative impacts from cancer treatment, but no one can tell us for sure what – if anything – will happen to Jack. Beyond that, probably due to his age and the fact that he only attended half a year of kindergarten, it’s difficult to tell if the issue is related to the cancer (and therefore accommodations need to be made) and what is something he just needs some help to master. He may just need time, or he may need special services.

We’ve learned that Jack is having trouble with internalizing the class routine. Even after a month, he doesn’t know which line he is supposed to be in when the kids split up to go to their math class or what group of kids he’s supposed to work on projects with. Worse, he doesn’t ask for help or direction and doesn’t seem to notice that, for instance, he’s alone sitting on the reading rug while everyone else is going to their project stations. The teacher needs to keep an eye on him and ask him specifically if he knows what he should be doing because he doesn’t look for hints or direction – he doesn’t even look up to the projector for instructions. It may just require some additional time for him to get the hang of things considering all he is going through, but it’s something we’ll need to watch because many of the treatments Jack has received can have cognitive effects that would affect planning and organizing, concentration skills, information processing, and attention span.

Math is another area of concern. The school splits first graders into three groups based upon their level of math knowledge. Jack is in the bottom third and within that group, he is still struggling to keep up with the class. Before he got sick he could count to 20 without difficulty. Now he is shaky above 10. Part of this is that he needs practice, but also he is having trouble seeing the patterns in math and lacks conservation skills. Between his parents and teachers, we need to figure out the best strategy to help him in this area. AND a way to get him to try things that he feels less than confident about. He is the type of kid who refuses to try something that he knows he can’t do perfectly…

A minor thing is that Jack’s handwriting seems labored, so he has poor penmanship. He hasn’t complained but when asked he did say that writing hurts his hands. This is not surprising considering that both Leukemia and some of the treatments can cause various aches and pains. He has also complained of blurry vision, but his eye exams have been fine, so we need to look into what that’s all about. I’m thinking it may be that it’s happening in the hour or so before he takes the medication that controls his spinal fluid pressure (which, when it increases, can put pressure on his eyes).

Our next steps seem to be getting some academic assessment tests and a 504 plan and/or IEP. I’m also giving Jack’s teacher the free copy of Educating The Child With Cancer that I got from the ACCO.

So now I need to get over my fatigue and fear related to reading anything related to cancer after-effects so that I can do some research and be more proactive about helping Jack in school. I can’t ignore the fact that my kid has special needs, however much I may want to!